tag:blogger.com,1999:blog-43301563430204426822024-02-19T07:16:25.950-08:00nanisblogBriana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.comBlogger404125tag:blogger.com,1999:blog-4330156343020442682.post-85906465580968794882018-02-02T15:41:00.001-08:002018-03-15T15:57:31.254-07:00The Good, The Bad, And The WetI think Wednesday, Dec. 6th was the anniversary of the actual stem cell transplant. Shane probably remembers but he is not here right now. Not sure why, but Malachi threw up this morning so I stayed home and Shane took a for sure safe and healthy specimen group to liturgy. Malachi has not been sick again and I'm really praying it was just an excuse to get me to change to bed sheets and scrub the carpet. Which I dutifully did, and now we can go back to our normal schedule of just coughing every night. Which he and Fi have been doing for weeks. I was hoping he had just gagged but he said his tummy felt really bad and then he barfed. Who need coffee in the morning? Vomit works wonders for getting you firing on all cylinders in two seconds.<br />
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We did our one year follow up in Chicago in October. I did not want to travel close to the holidays again so we compromised with a 10 month follow up. I was glad we did as the weather was still very clement and we could walk most days. The warmer weather back in August did make my legs feel a little jellyish but this time I had no problems- so nice improvement there. I have not had promise Shane to wake him up to walk me to the bathroom in the middle of the night since September before the transplant. Except the day of testing when we did not set an alarm and woke up 20 min before the appointment. So we took a car and got there just in time and got coffee after the appointments.<br />
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The previous night I had the requisite MRI, which I think was a full hour long. I've never felt so impatient before. Usually, I just relax and enjoy the warm blanket and the me time. Of course they pull you out to administer the contrast (gadolinium) but otherwise it is pretty 'quiet'. If a full can of soda pop knocking around a dryer drum is quiet. Not all of the test segments are that loud, but it is not silent, for sure. I think I finally started to doze off at the very end. There was definitely less excitement than the first MRI there for our acceptance evaluation. This time we were just hoping there was nothing new to see.<br />
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And there was. Not new new. Just old new. Compared to the initial MRI back of August 2016, there were three? new old lesions. But they were not enhancing, meaning they were old, most likely developed in the three months between acceptance and treatment . As we did not go back for the 6 month follow up, there was no way of knowing.<br />
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However, presentation is everything, right? And I think there we aced it. I still hate the math tests, and always will. I did not ask for an EDSS but it's just a number and I knew how I felt and functioned and it was worlds better than one year ago. All except my bladder. ( A side note, it has been suggested it may still be due to the chemo drugs bothering it and it did improve some from my discharge date, so I'm hoping it keeps improving. Another suggestion was anxiety, possible brought on by menopause or maybe HSCT itself, or who knows?) Dr. Balabanov asked me to walk with him up and down the hospital corridors doing his usual 'spot the gimpy bits" scan. As we walked he asked me how things were going and I told him very well. Except for the part where I peed myself on the plane and got to just sit for four soggy hours til we landed. Yes, I was wearing a pad. Yes I sat on my copy of the Wall Street Journal for extra absorbency. Yes I had been taking 5 mg of vesicare. He said 5mg is stupid. He only ever prescribes 10mg. Ok, he didn't say the stupid part. But he prescribed the stronger dose for the trip home. It worked but made me feel really queasy. I'm not a fan of that at all.<br />
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He said if it did not help, he recommends Botox as an alternative. So I called up my urologist and made an appointment to explore that option. First she had me get a CT scan. Nothing there. It was an interesting experience. The technician explained the solution they inject you with causes a warming sensation which starts at your feet and works its way up to your head. He said it was kind of like a hot flash, but added that I wouldn't know how that felt. I didn't set him straight. It did feel like a really warm fire was next me and was moving up my body. Which I though was kind of cozy. But I could see if someone was not expecting it it could feel worrisome.<br />
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Back to the urologist (side note: I drove myself to all the appointments. Huge difference from Sept. 2016 when my eyes were really bad and my father-in-law drove me to the ophthalmologist) where she fitted me up with several probes to pin point the issue. A urodynamics test, is I think the actual name. She inflated my bladder with sterile fluid to see how it held and emptied. First, I was to let her know when I felt like I would normally go to the bathroom and then she told me she would keep going to see how much I could hold. So I sat there and we chatted until I told her,<br />
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"I'd probably go to the restroom about now."<br />
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"Ok", she said. "Now I want you to-"<br />
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"I just peed" I interrupted her.<br />
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"OK. That was about 7 oz. You definitely have high pressure. Let's wait until it calms down and we will do it again."<br />
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We waited. And waited. For the bladder to stop spasming. It wouldn't. I guess that is why they call it Over Active Bladder. The urologist described it as angry. I describe it as really annoying. She said yes, Botox would be a good choice. It paralyzes the bladder walls and keeps it from spasming without permission. At high doses it completely freezes it and then a patient has to self catheterize. At the low dose, which I received, it just keeps it calm between restroom breaks.<br />
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So, I scheduled an appointment with the doctor and went home to research it. Apparently it wears off in 6-12 months so if you don't care for it, its not permanent. On the other hand, if you do like it, it will need to be repeated. But the process was not too uncomfortable. Some men are not crazy about the idea of a catheter following their urethra into the bladder walls where the injections are done. For once, I was thankful for a short urethra. Almost two months into it and I would definitely recommend it to anyone needing some help. And if you need it, they can sedate you. I said I'd be fine, and I was, and drove myself to and from the appointment.<br />
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But back to Chicago. The most memorable part for me, aside from the plane trip, was our discovery one night of a Vietnamese/French restaurant, The Colonial, not far from our rental. Once we tried it, it was our go to spot for the next dinner as well. I'm still dreaming about the spring rolls. Since that was my most memorable take away, I think it means everything is going really well.<br />
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Dr. Burt was pleased with the blood work I got done there and the fact that there was no enhancing lesions on the MRI. And the report that life is so much more doable and pretty much normal. Pretty much, but HSCT can't do everything and people are still people so those things don't change.<br />
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I still follow along the HSCT Facebook forums, especially the post HSCT groups. It is great to ask about how people deal with the unruly frizzy chemo hair. Or the hot flashes. Or what kind of exercise/therapy was most helpful once they returned home. If they needed vaccinations again and how it went. Etc.<br />
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For me, the hot flashes are still there occasionally. One year in and I can't say menopause is so bad. I'm still a little surprised and suspicious it's not for good. My last hormone blood tests still showed very low estrogen. But only time will tell. I did also get my titers checked and I retained all of my childhood immunizations except for HepB. I'm not planning on getting it, thinking leaving my immune system unprovoked is good for now. Which Dr. Burt is fine with and leaves it up to patients. It is a big debate amongst the HSCT veterans and I'm comfortable with my decision right now. I did have a couple colds since returning but they were not horrible events. Many people get visited by past symptoms when they get sick and can often tell they are getting a bug because their walking is off or their vision is blurry or a host of other fun MS treats. I was relieved I didn't regress too much but am also very careful about being around any illnesses, which is nothing new for me anyway.<br />
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So, 14 months out and I am really glad we were able to get HSCT when we did, though sooner would have been nicer. I'm still surprised not many people know about it. I am always happy to share information and forward Shane's email with all the links to anyone interested. (Seriously, drop me your address and it will be in your inbox in two seconds.) A small percentage of patients do not respond to the treatment and can then be given infusions of another chemotherapeutic drug (Rituxan) to attempt to shut things down again. So far I'm good and hopefully if we return for my 2 year we will find the same. But if not, at least there is The Colonial.<br />
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Sorry for the unorganized update. I started it back in November. But I wanted to finally get it written down and shared with anyone interested to hear.Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-51616824490869797062017-11-27T17:48:00.001-08:002017-12-03T13:27:31.914-08:00Man, That's Dopamine! (Or Not)I was cold. So cold. Bone chilling cold. I wanted a blanket but was afraid if I moved it would cause the movement to only chill me further. I didn't want just one blanket. I wanted a pile of blankets. I felt like nothing could penetrate the icy air around me. I was frozen. I looked into the flames hoping their bright colors could offer reprieve from the soul-sucking frigid hell I found myself in. <br />
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Instantly I realized there was no pile of blankets deep enough. No blazing fire high enough to melt the iceberg I was naked and alone on. There was only darkness to comfort me and it was not comforting. No one knew or cared. The loneliness only made it feel more heavy. I knew the air temperature was way above freezing. I knew I was not going to die. I also knew I could not get away from or temper the coldness because the coldness was in me. No matter how close I sat to the fire, nothing changed. No matter how hard I stared at the leaping flames I could not channel the warmth to my body.<br />
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I was hopeless and paralyzed. Like when you wake up the morning after a loved one's funeral. It's raining. The baby and you slept poorly. Shane is gone to work already and it will be time to get everyone up soon. Then you remember the previous day's events and why you feel so awful. And you also remember you are out of coffee and the fire is out. Why even get out of bed? But you know you have to.<br />
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Then suddenly, the baby starts gulping and I realize there really was nothing wrong. I just having a let down. Along with the Dysphoric Milk Ejection Reflex <a href="https://en.wikipedia.org/wiki/Dysphoric_milk_ejection_reflex">(D-MER) </a>that had been accompanying the let downs the past few weeks. It only lasts a few seconds, but feels like lifetimes, and then suddenly the fire makes its presence felt. The clothes on my body are insulating and cozy. I realize my coffee is still hot, Shane is on his way home soon and picking up dinner. My chubby baby is cuddly and safe in my arms, getting all the nourishment he needs, and all is right with the world.<br />
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But those seconds were quite a trip. I wondered where the next nursing would take me. I know it will not be pleasant. After awhile it becomes like licking a 9volt. I know it is coming but it still gets me every time.<i><b> I </b></i>read up on the science explaining the strange phenomena and it makes perfect sense. Of course I would chose a short, though severe, drop in dopamine over not feeding my baby. It helped to know that is short-lived and not an indication anything is really wrong. Mildly unpleasant. A curiosity. But nothing bad. But it was also completely foreign to me and nothing I had ever heard of or experienced.<br />
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The other odd bit was it only happened with Malachi. I though by #5 I'd seen it all. But no. First the D-MER and then the needing to be sewn up with Fiona. Malachi's tongue tie. I'm sure there is a lot more I have not experienced and maybe never will. I was ready and felt I could handle the freaky nursing instances just fine when Fiona came along. But nothing happened. Well, not nothing. She just barfed abundantly. Not just after nursing. All day long. It is so true every pregnancy, delivery, and baby are different. I guess I was glad I got to experience all the different pieces. I'm not sure I could have understood many of them without having lived it myself. Just my learning style I guess.<br />
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I am thankful for all the experiences, pregnancies, births, and babies thus far. If it is just thus far. As of now I am still in menopause. No one knows when/if it is forever. I still have our baby seat in the garage. I did give it away once but after a few months it came back, sans base. Don't know what that means. I tried to sell it for a few dollars this summer, but there were no takers. No one wants a car seat without a base, I guess. I've been reluctant to get rid of all the baby clothes. Not true. Actually, I did give away all the boy clothes, with the car seat that came back. And some of the girl clothes. But I guess I had a ton because there are still boxes taking up space in my closet. and the garage.<br />
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I'm not sure why all this history is coming up in my mind now. But it did so I thought I might as well carpe diem and get it written down.<br />
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Next time I'll update the post HSCT progress and regress. More progress than regress and absolutely no regrets. And no, that's not just the dopamine talking.Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com2tag:blogger.com,1999:blog-4330156343020442682.post-21547407516276319342017-09-05T16:29:00.000-07:002017-09-05T16:29:19.949-07:00And Now For Something Completely InaneAt least it will be the when I tell it. <br />
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I do enjoy reading some hints and tips when it comes to fashion. Mostly because I don't get out much and I'm still fine wearing my 10 year old yoga stretch pants from Old Navy. Plus I wore them in Scotland. And New York. On the airplane to Bora Bora and Palau. And for all the babies, and for all the babies' infancies (and lives) So they are kind of souvenirs now. Maybe old and worn out souvenirs. But they have memories. Like the time Malachi had a big diaper blowout while sitting on my lap. And the many times Fiona turned them into a cheese factory with her every quarter-hour on the hour barfing for the first 6 months of her life. Sure they are old, but you can't buy clothes with pre-made memories/smells. So I'm still holding on to them. <br />
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And wearing them as I type. But I do enjoy reading other women's fashion finds/hacks. I just don't let them influence me. <br />
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When it comes to hair...? WEll there is only so much you can do with this.<br />
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It is a little longer now. So I tried the scarf Kateri knit me. The scarf is cozy, and kind of matches my hair.<br />
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I suppose I could try sleeping on it differently for a new, fresh look. But frankly I'm no into anything that disrupts my current sleep situation. So we are kind of at an impasse there.<br />
Shane took a look at it the other day, still wet from a shower, and declared the gray was really hard to see. Fashion tip from husband-take 20 years off by wearing a rain cloud over your head. But that might get my pants wet, and then the left-over baby barf smell gets much stronge.<br />
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Then there are my nails.<br />
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The chemo does some fun stuff there. Ridges. Cracks. Thinning. Splintered layers. I didn't mind too much as first. But then I started snagging them. On my nice pants. The ones I wear out to dinner (Just kidding. They are the same ones I wear to Costco.). So I knew it was time to do something. First I tried a band aid taped around the nails. But it kept falling off.<br />
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I've never been a huge fan of painting my nails. My hands get used for too much. But I finally decided to try it and hunted around the drawers' til I found an old bottle of red nail polish I had somehow not thrown away 'because I have children and children and nail polish do not mix!' ( I have the carpet stains to prove it.) I was glad to have something to fill in the crevices so I painted my thumb- the biggest offender at that point- and carried on.<br />
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Then several other nails followed suit and demanded spackling.<br />
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The red polish was not the look I was going for so I broke down and BOUGHT new polish. Not being a connoisseur of polishes, I just grabbed the palest-cheapest pink I could find at the drugstore thinking that would blend in well, and this is what I got.<br />
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Shane took one and asked,</div>
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So then I had to remove the offending polish. </div>
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Initially, the acetone only slightly softened the paint, and the rubbing smeared it. It literally looked like old chewing gum had 'melted' onto my nails. So I made another trip to the store and bought NEW remover. And clear nail-strengthening polish. I don't know if the cheap polish or the old remover made it all not work well, but in the end, and with a lot of scrubbing, my nails were free and soon ready for the clear coat. Which worked well, but now at 9 months POST HSCT they are fine and I just leave them alone. The hair is still an ongoing something. Not sure it has a name. I had Shane cut the length as short as he could in the very back while the top is growing longer, curlier, frizzier than I know what to do with. I'm hoping if I just leave it alone it will all eventually be long enough to have a style beyond 'electric wow!' and I can cut off the frizzy bits. But for now we/I just have to live with it. </div>
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Malachi's fashion sense could use a little help too. Though, in this picture, he'd forgotten his jacket but wanted to blow bubbles. Fiona remembered her jacket and he was amenable to wearing it. Function before fashion is my motto. Always. One fashion tidbit I am happy to pass on to my children.<br />
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There. How's that for inane? It's enough for me, too.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-43699775913991354762017-04-07T11:01:00.000-07:002017-07-06T15:15:02.864-07:00I Hope This IS A Good Idea( OK. This first part I wrote while still in Chicago. But since I didn't' write much, I thought I'd save it.)<br />
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I'm sure it's fine. I had thought of having Shane read anything before posting to make sure it was fit for public consumption and would not get me committed. I feel perfectly reasonable and sane. Though the other day I was explaining to Shane the connection between 'cogitate' and 'cognate' and he said,<br />
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"What about a cog in a wheel?"<br />
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I was more than happy to enlighten him. He said he wished he'd gotten it on video. So far we have avoided the psychotic breakdowns some patients experience. At least that is my version of the story. Hopefully I will stay that way. Though Shane could do with some new entertainment. I don't really care, though. <br />
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Today is the first day where I really feel on the mend. Which is awesome. As for going home and discharge, the nurse is going to go over the information any second. Which is good because Shane should be back any second and I sort of trust myself to remember what she says but it's just a lot safer if he does not hear it through me. <br />
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And that was it. And we have been home for over six weeks. And I thought I'd fill in the gaps.<br />
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Chicago went very well. Better than I was anticipating. Sure there was the occasional nausea/vomiting. The hospital "sleep". The being connected to my IV pole. The incessant beeping from said IV pole. But it was all very manageable and most complaints, the had the nurse had a pill for. Except the boredom. But she said that is the last part and a sure sign release day is coming. I'm trying to remember the timeline a little bit better. Sometimes looking at pictures helps. But I took a few of the meals I had, and they just make me feel sick. So these are it for now.<br />
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In no particular order:<br />
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Quick kid photo before we left. <br />
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Getting ready to get the picc line inserted. It was easy. I thought I would watch, but then I thought what if I flinched and moved so I didn't watch the incision part. Just the threading the wire through my vein up to my heart and inserting the tube. But I did coordinate my top to match my pressure cuff. Now I had some arm jewelry to jingle when I moved. <br />
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Then we checked in to the hospital and the fun really started. First the four days of cyclophosphamide. Along with mesna (to protect the bladder) and the rATG.<br />
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All dressed up for a stroll around the hospital floor. And around. And around.<br />
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And once my white blood cell count was pretty much non-measurable my own previously harvested stem cells. <br />
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Plus two units of whole blood product. And platelets twice( I think) when my own system didn't kick it into high gear quickly enough.<br />
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Then we had a birthday party. With decorative lighting and a candle we didn't light.<br />
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Shane said I could start at zero.<br />
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Shane brought me slice of pizza and I ate the whole thing.<br />
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We took walks around the 15th floor and said hello to the devices. This one was wandering off on its own, looking for its cohort. I guess.<br />
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Dr. Burt made appearances in the mornings to check on things. Sometimes by himself, sometimes with his cohort. I wanted to get a picture with everyone, but the morning of discharge, it was Dr. Burt by himself. I asked if we could get a picture. He said yes, but it looked like we'd have to do a selfie. So there is the doctor who made this all possible. And who we will get to see again in six months for follow-up.</div>
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Shane came to pick me up and we said good-by to the hospital. </div>
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And headed to the condo where Shane had been living. With a real bed. And a view. And without anything that beeped. It was fabulous. Until I woke up the next morning feeling horrible. A cheese stick, and half an apple later I was able to take a real shower. So weird. No hibi-clens, just real soap. And real clothes. And fresh air. Really cold fresh air. Shane had been trudging back and forth to the hospital to visit, sometimes in -5 F weather. I was oblivious to the low temps until I was discharged, but luckily that day turned out to be balmy 17 degrees, I think. And no wind. </div>
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Ok. Now it has been over three months since we got home and I'm determined to finish this up. Long story really short: I'm feeling back to normal. My appetite sorted itself out after about a month. Before that is was like first trimester eating. And some napping. But no heartburn. So, bonus.<br />
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I tried to get some walking in every day, and I did. Nothing too strenuous. To the mail box and back. Twice. Plus there is hill I can go up and down, twice, if I chose to. Then after two months I decided to go ahead with the suggested physical therapy. At first I thought it was just for people who were really physically impacted. But then I thought, 'oh, right. like me.'<br />
So I went for six weeks. Today was the last day. I'm really going to miss the lower back massage before we'd hit the gym. Listen to that. Hit the gym. Like an athlete or something. <br />
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We worked on a lot of balance and leg strengthening (esp my left gimp leg) and we made a lot of progress. I even went out and got a Bosu Ball so everyone at home could see how I looked like an off-kilter washing machine when I stood on it.. The first time at therapy I could not stop laughing. It was like there was a little earth quake just under my legs as they frantically kept trying to figure out what was going on and why the floor kept moving. But by the end they figured it out and we moved on to doing exercises while on the ball. So, good things. I have a collection of exercises to do now. And if I feel like I start to regress at all in the future she said I can always go back. I won't miss the driving in the rain and parking in stalls meant for golf carts though. It was pretty cool, and very new, to feel like I could work hard and make progress. Without MS throwing a wrench curve ball or a foot drop at me at random and sending me back to square one just for fun. In the past, I mentally felt a bit like 'why put in the effort?' But now I feel I have a fighting chance to actually make some headway in facilitating my body to at least maintain capabilities and possibly improve on them. Maybe I'll aim to to do a whole P90X cardio again. <br />
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The first four weeks I went in for bloodwork every week to send back to Chicago. The nurse would call with the results and I'd feel connected to Dr. Burt and his team again.<br />
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Then after a month, I went to every other week. And then, I was done. All the bloodwork was good, except there was a part when the CMV count was a little high and the nurse suggested I try a different anti-viral. But the side effects sounded not great so she just let me keep on with the acyclovir every day and it sorted itself out. I'll be on the acyclovir for a year.(To keep shingles at bay.) The Bactrim (antibiotic) and the fluconazole( antifungal) were just for the first three months, which I finished up in March. I don't miss all the pills. And I'm happy to report I didn't have any reactions to any of them. <br />
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Once the Chicago blood tests were over, I figured I needed something else to monitor, so I went to my doctor and asked if he'd run some hormone tests. And since I was there, and because I did get whole blood, and being the not-too-comfortable-with-the-unknown (you can read that a control freak, if you want to) and because no one could assure me there were zero risks involved, if he could run tests that might give useful information I would appreciate it. (No one said run-on sentences were a side effect either. But there they are.) He humored me and took blood for all of them. And everything came back all clear. And menopausal.<br />
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Which they did stress was a known possibility. But it can also be temporary. And there is no way for them to predict who or when a patient will end up in either camp. So that's a fun game.A past patient was 'menopausal' for six moths. And then she wasn't. There are no issues with pregnancy after HSCT and given out track record, I figured it was not much of a chance. My GP recommended I see an OB/GYN for further monitoring. So I called up one of my midwives and she is checking levels for me. I found it very frustrating to not find more information on the topic on the HSCT forums. People just go back on birth control and no one collects data to share. (Such a sad waste.) Studies do show some chemo drugs(cyclophosphamide being one of them) are more likely to cause infertility. A patients age (older, closer to forty)is also more likely to result in premature ovarian failure. But if you are interested in follow-up, you have to search it out. <br />
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So far I feel pretty ok. A little sensitive to over heating. The night sweats subsided after a few weeks. I think I'm doing well, but maybe that just means it is not really menopause yet. It would be rather novel to be pregnant without wondering what state I'll be in while having a newborn and toddler. And I gave away the last of the boy newborn clothes and that usually precedes a pregnancy for some reason. My midwife said she will do the same tests, a month apart, to watch for any trends. So far they are all trending to menopause. Estradiol went from lower 24, to really low 15, to not much<5. LH is high (above 40 each month) and FSH (83.2 to 96.9) went from high to higher and is staying steady. But nothing is for sure.<br />
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There is a newer blood test to gauge ovarian reserve, AMH, which she also ran each month. It's been steady at <0.08. Which according to a chart Shane found, makes me as likely to conceive as a 60 year old. <br />
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I'll go back in 6 months and have blood tests for anything that snuck in via the donor blood again, as some antigens take that long to show up. And then I'd feel comfortable moving forward. I feel there is a small connection between responsibility and trust. And I realize, I've got issues on both sides. But I can't help imagining if we are able and we had a boy I'd feel strongly we should name him Isaac.<br />
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But that's just my thinking right now. <br />
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So, sorry for the very unorganized and delayed update. I'm not dead. Doing very well. HSCT was way easier than I imagined. I didn't suffer any bad side effects. Dr. Burt and his team are amazing and it felt they thought of and pre-treated for any issues, before it became an issue. And I really hope his work will soon show everyone it is totally doable and people can stop stabbing and injecting themselves with various substances and choose do something that can have a real, long-term impact. <br />
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I realize this somewhat short synopsis is incomeplete on the impact of the procedure and is only from a patient, that would be me, perspective. There is the support person, that would be Shane, who took care of everything and also made it not stressful for me at all. And the support people back home, that would be Shane's parents taking care of the kids. The financial help, that would be my parents and their help in securing the myriad flights (four trips so far) the procedure required.The incredible nursing staff at Northwestern. And of course the amazing, and busy Dr. Burt. It was all very humbling. and I'd like to thank them all, every day. Forever. Not to sound like an academy award acceptance speech, but I could not have done it without any of them. So thank you all. And to those who prayed for us. It felt like we were not alone, but protected and in a safety bubble. Oh, and for the priest, who brought the Eucharist and heard my confession. And the Eucharistic ministers who came to visit several other times. I've never had a long hospital stay and didn't realize how comforting that would feel. But it did, and it was amazing.<br />
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More stories for another time.<br />
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Now its time to start prepping for Holy Week.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com2tag:blogger.com,1999:blog-4330156343020442682.post-35108457902909065432016-12-12T09:56:00.000-08:002016-12-12T09:56:01.018-08:00One Foot Through The DoorI figured it was time for and update and to record any events I will probably forget but might want to keep a record of. On our evening walk last night, I remarked to Shane how surreal it feels now. We were done with the chemo. We are in Chicago. We are not on a waiting list hoping for a date to start treatment. We applied. We came. We got accepted. We got it done. We barfed. We ate Bugles at 2am, ok just I did. And now.....as the nurses predicted, we reached the I'm bored stage. Which is an ok place to be. Plus it's snowing outside like a snow globe so it's a very cozy way to be bored. Shane was so bored he had to go for a walk. In the snow. <br />
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This morning greeted me with a red velvet cake with the number 0 on it. I feel about 39 years younger. Dr. Burt came in and said he was sorry we were spending my birthday here. I told him it is the best way to spend my birthday ever. (Though the birthday Shane took me to Bora Bora was pretty epic too.) then he looked at my scalp and called in some cream to help clear up the rash. Which is perfectly normal and doesn't bother me, but I can't see it. I'm also wearing my cap less, just to avoid any extra irritation.<br />
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Next Shane brought me a slice of deep-dish pizza. Which I thought would be my lunch, but 30 min later I was ordering a turkey sandwich. (It's ok, Precious. You've been through a lot this week. And the nurse told us about a different place which will make your crust with BUTTER in it! We like butter.So definitely putting that on our follow-up visits list.)<br />
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I realize these sentences/thoughts are all over the place. but as I feel my brain thawing it's just all coming out. Add to that the emotions, the constant hunger, the incessant beeping sounds, and it's a real party. In my head. Grab a cube of butter and join me! <br />
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Poor Shane. Now that he has had some alone/reflective time, he's gathering things to share and realizing how much is not out there that should be there. I do ok in a pinch to bounce ideas off, but still a little slow on the uptake so there is still some restlessness. I told him he needs to start a modern day Salon. He's a bit of a revolutionary. for sure, and I think it'd be a perfect fit. No vapid, glossy magazines to distract from the real work of sharing real ideas with real people (not that there is anything wrong with some distraction from hard work when your brain just needs a break. I totally get that.) But that it is not Shane. Apparently the chemo did not fix my whole phone not sharing pictures problem. I did get one of Shane. staring up into the snow, contemplating the universe, as is his wont. Which I think would have been a runner up for Rodin's final model selection. It's the one I would pick, but I'm a bit biased when it comes to m husband. Which I have every right to be. My brother is very gifted, maybe I'll commission him to sculpt it for me. It's freezing out, so Shane is wearing clothes so I don't think it would be awkward for anyone. <br />
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Hooray! Room service is open so I can order breakfast-snack-lunch-snack now! Someone had the brilliant idea of letting people schedule deliveries at certain times. And the food just keeps coming. But they do allow the staff to re-group before 6am so sometimes I feel the gap if I didn't stock up well enough. I really don't know what I'm going to do without the kitchen staff when I get home. Haha! Just kidding. I've got six kids at home. Most of whom are safety certified in the kitchen. And they are all excellent cooks. I guess I will survive. (Ooh! We can have tasty snacks for Shane's soirees! What a good idea.) <br />
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Another good idea was Shane getting Roku for keeping us entertained over the past however many days it has been? The nurse last night remarked our t.v. was still working! Some patient's screens had been compromised by the snow. We never noticed anything and were completely insulated from any issues and never had to wonder what new menace The Flash would be up against next. Even though it had already been taken care of. Previously. It's feeling like they just grab something out a bag and use it again. There is no end to how many times someone needs to be defeated. Sorry, Ape. your number is up again. Shane just pointed the little black stick at the screen and we were off. Brilliant! I don't know how it works but it does and I'm grateful and think they should be standard issue for anyone admitted to these floors. The nurses are all Florence Nightingales, but they can't be expected to do entertainment too. <br />
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FYI, just wanted to let you know I fixed my computer with one weird trick Shane showed me. I turned it off and on! YOU don't need to send roses or anything. Just recording for posterity.<br />
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Nurse said some level of something is low and I might need platelets today. Bring it on. Here is my arm. It is so nice to be able to just trust them to watch for things and take care of it before it gets close to being an issue.<br />
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The tests confirmed the chemo did not confer any superpowers on my memory abilities. And the therapist says he won't be seeing me again. I thought we were friends. But if he wants to graduate me, that's ok too. Maybe it's Stockholm Syndrome, but I feel sad about leaving everyone. With the added scalp treatment twice a day, it is really starting to feel like a resort. But their goal is to get me back to the real world. Which is my goal too and I am so incredibly grateful for all the work it took from so many people to get me here. It really is overwhelming.<br />
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As is my appetite. I think Munchausen syndrome might be taking over now. Good thing I planned ahead and ordered lunch already.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-8802917279614212922016-12-02T19:33:00.001-08:002016-12-02T20:41:25.243-08:00The Groundhog Day EffectOk. Not really. Yet. <br />
<br />
It's only been four hours since we signed in downstairs, but it feels like a bit longer. We are both pretty tired from not much sleep last night. I don't really want to take a nap in the event it messes up my sleep tonight and "sleeping" in a hospital is difficult enough already. <br />
<br />
We got situated easily enough. Met the nurse, Rachel. I know because she put her name on the board. Which is brilliant as names are as easy for me as numbers to remember. I'm sure eventually I'll get all the names down, and then hopefully it will be time to leave. <br />
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Shane ran "home" to get a few things and I fully expect he will end up falling asleep. Which would be good for him. I'm glad we decided to plan on him staying at the condo. It might help to break up the days a bit more, gives me the opportunity to send laundry back for him to wash, should afford better sleep, and then it can feel more like a date when he comes to hang out. Which he can apparently do as much as he likes, with no set visiting times etc. Just some preventative hand washing etc when he comes. He can even bring me more food should I want to augment my room service meals. Several patients have listed places that will deliver for a dollar or so, so I shouldn't have to worry about going hungry. Which is good, as I am already about 5 lbs. down from our visit in August. I wonder how much hair weighs? I did lose a bit there!<br />
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<br />
We got all the vitals done and blood taken. Once those come back and Dr.Burt comes by, we can get the go ahead to start the Cytoxan for today. I'm really hoping it will be like the first time during mobilization. Only thing I really noticed was the itchy head, but that went away quickly. But I think I get the same drug all five days so it might have an accumulative effect. Which I guess we will find out. Then after that I get my stem cells back! Which seems crazy early. I feel like I should wander for 40 years or something at least. But maybe once the full side effects settle in I'll wish I could trade it for forty years.<br />
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While I wait for Shane I thought I'd update a little here, and before the chemo drugs get started. Yesterday we got the PICC line placed. Which, again, was not a huge ordeal. Except the doctor was the only one there at the time to the wait time was a little long. She explained what she was going to do (stick a needle with a wire attached and thread it through my upper arm until it reached the outside of the right? ventricle. The lidocaine worked well and I didn't feel a thing. I could turn my head ( I was flat on my back, right arm stretched out to watch the process and the ultrasound monitor she used to guide the needle.) I didn't watch when she made the incision, just in case I instinctively moved my arm away, and Shane couldn't be there to video so I didn't get to see that part. But everything else was interesting to watch. And at the end I had a three-legged squid hanging out my arm. With a long tail extending to my heart. Which could be gross if you think of it as an actual squid. But is ok if you think of it as a really neat delivery method for the drugs, and now they can get blood without poking me. So that is handy.<br />
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We can visit with Dr. Burt's other patients in the common areas. For some we have to be masked and gowned. But no visiting in the patients' rooms. I don't know if we can traverse the floors, as some of them are upstairs, but for now I'm content to just sit and play Rear Window.<br />
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(Look who showed up and found the picture.That would be Shane. Not pictured here.)</div>
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I took a picture of my view, but now I can't find which file it decided to hide it in (no surprises here) but it is not much to look at. Except it is of the outside world. And I'm stuck on the inside. But its really cold out there, so I'm ok with that. We may get snow in the next week or so, which would be pretty to see. There is potential snow in the forecast for home. Which kind of figures. We leave. Then we get snow. But the kids will really enjoy it so hopefully we can see pictures.<br />
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<br />
Got my IV going now. Just Mesna and some fluids. I do get the Cytoxan later today, along with the wonderful Lasix. With the wonderful Lasix, I also get a Foley catheter for 5 days as well. The nurse assures me the Lasix is not so bothersome when you have a constant drainage system in place. So at least there is that.<br />
<br />
Cytoxan is dripping in now. Along with the Lasix. Which means they have already placed the Foley catheter. At the moment I am not too impressed. It just feels like I have to pee ALL THE TIME. But I can't get up. The nurse says my body just needs to get used to it. Once it settles down you won't even notice its there. Well it has not settled down yet. So like I said, I'm not to impressed.<br />
It just means another bag to hang on my IV pole, which is sadly bereft of any Christmas decorations. Maybe that can be Shane's mission tomorrow. <br />
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<br />
Today he did find me a scarf. He texted some pictures I texted back the black one. He got he grey plaid one. So we are both happy. Plus its big, almost like a shawl, which I was thinking I wanted instead of the scarf. He told me one of the scarves was $425. So he asked the sales lady for anything that did not contain real gold threads, or diamond tags with the misspelled name blueberry. He found one and it is wide enough I can wear it like a shawl so the lines in my arms don't get all tangled up but my shoulders can stay warm. I've been wearing it the rest of the day. <br />
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Surprisingly the rest of the day has gone fairly quickly. Shane came back from all his excursions and we traded stories over the order so loukamamades ( I know I'm not spelling that correctly) he brought back for us. <br />
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The nurse had already inserted the catheter, which was no big deal and I was curious/excited to see how the Lasix would feel. The catheter was another add on to my IV cart I have to untangle and babysit. So not good from that end. Once my body accepted it, it calmed down a little, But very slowly. After some time I just tried to accept the fact that yes, it felt like I needed to pee but I didn't need to get up. Everything was taken care of. It almost felt like I had started to pee my pants. Turn off freak out response. I'm connected to a big tube with a bag. I don't have to go anywhere.<br />
<br />
Then I stood up. And discovered my phobias were real. All of them. And they were in my underwear. And in my pants. Really? It has one job. transfer the urine from the bladder to the bag. Bladder to the bag. No stopping for anything. Especially no stopping to spray down my underwear. You're Fired.<br />
<br />
I sighed and called the nurse. I said my catheter is leaking.<br />
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She came back and inflated it and told me to pee. Still leaking. I asked if we could just ditch it. She said maybe. I needed to pee again and then call her so she could ultrasound my bladder and see what was left. So of course I didn't have to pee for hours, despite the half liter of water I just drank. Finally I did. She checked. Nope. Too ,much urine left. She paged them to come back and re-insert the catheter. Which, by itself is not a big deal. Babysitting it just gets really old. So I'm waiting for that now. But please, take your sweet time before tethering me to a urine receptacle. The only thing I have to look forward to is sleep. And Shane coming back to visit in the morning. <br />
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It is kind of surreal to actually be here. In Chicago. Getting HSCT under Dr.Burt. Who I will probably see this Sunday. I feel like it has still not sunken in. Having made three trips in barely over three months does make everything feel a little ordinary. I did get a dose of the rATG today. Many people said that was the worst. I'm fine for now. Hopefully the repeat doses over the next four days will be the same, but I doubt it. Shane asked the nurse what the 'rabbit'(that's what she called it) is for and apparently it depletes certain types of cells and something else. You, or I, will have to ask Shane. He was there. A rabbit is involved somewhere<br />
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OK I'm fairly certain some text disappeared without my permission. But its too late to hunt it down. So I'm sorry if some of this sounded funny. Got the new catheter going. So far so good. The Benadryl has not worn off entirely so I think I'll grab whats left and try to get some sleep. <br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-86925917863146882792016-11-30T08:55:00.000-08:002016-11-30T08:55:09.536-08:00And We Are Off! Again.It feels like we just got home. And now we are preparing to go back. Somehow I thought the Thanksgiving break was longer. But now it's already over and I am collecting things to get me/us through the last phase. I will be in the hospital for almost three weeks straight. I think the isolation part is about 10 days, but it sounds like you can still have visitors for a little bit each day. As long as they are sterilized. And not sick. So if Shane gets bored he will be able to stop by. Not that I'll have much in the way of entertainment for him. Unless the psychotic episodes manifest themselves. But then he might just want to stay at the rental instead. I think he does have some meetings scheduled so that could help break things up for him. I wish I could find a great series to get into and maybe I wouldn't even notice all the pokes and medications. Unless, which I'm pretty sure they do, they give me Lasix. Nobody could not notice that. I've been getting tips from other past patients on what to bring/how to prepare etc. Shane will be there and can get bring me anything I need and the hospital has all they can offer. But it was good to hear what other people suggested/found really useful. <br />
<br />
One person suggested a water bottle. Which I think is really wise. The little Styrofoam cups with a straw sitting on your bedside table are recipes for disasters. The night in the hospital I was trying to get comfortable after my last Lasix induced trip to the restroom and the pillows kept crowding me so finally I took one of them and tossed it to the end of the bed. Somehow on its way, it swiped the side table and I felt cold water splash all over my side and the bed. It wasn't too bad, but I was concerned the water might not be good for the electric bed, so I called the nurse and she changed the sheets and gave me a new gown and I crawled back into my crinkly-ever-inflating-deflating-crib.<br />
I asked the nurse if there was a way to turn it off, but she said no. I'd lose all the electricity driven perks. I wasn't about to try sitting up on my own so I just toughed it out. Plus, the call button wouldn't work and then who would change my sheets at midnight? <br />
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Shane would have , if he were there, but, like I said, we both thought it would be a good idea if at least one of us had a restful night's sleep. Another tip garnered from the veterans for the big stay: get the nurses to adjust your vitals/medication schedule where they can to maximize uninterrupted sleep time. For my one night stay nobody poked or prodded me for a good eight hours so I was pleasantly surprised when I woke up feeling pretty rested the next morning. I think Benadryl was the only sleepy drug they gave me. I think the rest was just me being tired. From lying in bed all day? <br />
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The flight back to Chicago this time was pretty uneventful. I watched 'In the Heart of The Sea' which was entertaining, and sadly reminiscent of 'The Seawolf '. Sad, because it wasn't 'The Seawolf.' So it was over in a couple of hours. I've never read 'Moby Dick' so at least there were no spoilers. (Haha) But both books had boats. And lots of cold water. It almost makes Shane's commute seem doable. And it made me very thankful for electricity. If only the backers of the whaling boats could have seen that one coming. (No Chris Hemsworth! You don't need the kill that whale. The light bulb is coming.)<br />
Who knows, maybe the backers of the boats backed those too. Maybe I'll research it later. But probably not. I've got a trip through the Amazon to get through first. <br />
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Our last trip we decided to bring the wheelchair Shane got me when my legs were more squirrelly. Oh boy! The airport was an adventure. I wanted to walk as much as possible before sitting on the plane so we walked up to the security lines, pushing the wheelchair. It was like they didn't know what to do with us. <br />
<br />
Who is the chair for?<br />
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I should have brought/taken a video of me walking a few weeks before. Shane said it was pretty bad. Which was why he ordered the wheelchair. I only know how it felt, but that has always been worse than the actual presentation, I think. But I'm hoping we won't get another chance for video. My legs/balance/walking have improved quite a bit from our last trip. And though I probably could make it to the Navy Pier, it doesn't mean everything else (I'm talking about you, Bladder) would cooperate. But I'm ok with just getting glimpses of it too. And saving up energy for when I check in to the hospital on Friday. I get the PIC line put in tomorrow, and so far people say it is not a big deal. Of course it will be staying there for about 3 weeks, so that might get old. But oh well. Like I said, we didn't come for the view or the tourist attractions. So it will all be good.<br />
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Today we have a rest day. And tomorrow we get the line put in, but I think that only takes up to an hour at the most. Then we can pretend we are just here on vacation. After Shane finishes his work for the day. I did bring 'The River of Doubt' to read ( I know. What's up with all the boats and water stuff?) I really don't know. I guess I wanted something to feel adventurous while I'm tied to my bed and IV pole. Or it was the first thing I saw on the shelf as we were walking out the door. Take your pick. Grandpa is reading 'Swiss Family Robinson' to the kids back home, so I might read that one too. You never know. <br />
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<br />
Ok. Time for some lunch and some last minute drugstore purchases. Oh, and maybe some of the online Christmas shopping I was wanted to get done last trip. I'll have Shane take away my devices for the heavy steroid days, as another patient warned about shopping at those times. Maybe getting home will be like Christmas for everyone. 'I don't remember ordering this.' Where did this come from?'<br />
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Could be fun for the whole family!<br />
<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-8060302512905859152016-11-10T15:39:00.001-08:002016-11-10T15:39:21.401-08:00Just waiting.....still.So I had envisioned keeping a very detailed account of our trip. I really appreciated reading other patients HSCT stories. Now I'm just really impressed anyone got anything written ever. Seriously, yesterday's post took me two days, 50,000 backspaces, heavy re-writing, and it was still not what I had wanted it to be. <br />
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Shane went out to get some dinner for us. My appetite has been a little more voracious since the steroids, after the chemo, so I'm trying to keep up and maybe store up some reserves for the nest trip. Once we were discharged I felt a little uncertain being away from the doctors' constant care. We were told to take my temperature twice a day, and if it ever got to 101.4 go straight to the ER and page Dr.Burt. Easy enough. Until the first day it climbed to 99.1. Then the next night 99.6. <br />
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Was this ok? does it mean we should go in? We didn't know. Finally I found some other patient stories, and yes it was ok. Just means things are working. But if your get to 101.4 , head in. I don't know what that would indicate but I know they would take care of it. It would have been nice to know 'Hey, your temp is going to fluctuate a lot but that's ok.' I guess that part got left out. While I am documenting 'things I wish they'd told me', let's just add a few more. <br />
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Like ' Hey here is some anti-nausea medication. Take it every eight hours when you need it.'<br />
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<br />
It should also have included "but be warned, it is also a killer constipant."<br />
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<br />
And when we finally arrived at that realization, along with the bottle of magnesium citrate to remedy the situation, a little note attached to the side saying ' Take tiny sips. Do not guzzle the fizzy syrup like s soda pop'. would also have been appreciated by some patients.<br />
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I feel like I'm complaining a lot. But if this is going to be useful, it also has to be honest. And I wish I had read my story before I came. I would have also brought some books. We watched a bit of the election coverage. And now some of the post election coverage. It was mildly entertaining to see the media so flummoxed by the results, scratching their heads asking 'how did we not see this?' <br />
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No one mentioned dry mouth as a freebie. Yet the gift is here. Taking sips of water helps for a second, but I need to sleep. Because I need to get up in five hours. And because I'm tired. But it feels like I have the Sahara desert in my throat. I asked on the forum for suggestions and someone said there is a lozenge in stores, so we will/Shane will track some down tomorrow and at least daytime will be tolerable. I tried turning the shower on to add moisture. I tried breathing with my head under the covers, which only added to the feeling of suffocation. I had already turned off the air/fan which I like to blot out the sirens and street noise at night. So instead I'm up and writing.<br />
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There was a protest rally not far from us earlier tonight and the police cars were whizzing back and forth for a long while. But I'm pretty sure everyone has gone home now as it is calmed down, As far as I know no one was shot but we'll have to wait to read the news tomorrow to be sure. Seattle held its own rally too. Three people were shot, but I think they were not part of the rally and it said they were taken to the hospital. So hopefully that is a good sign Again, we'll have to see what the news says tomorrow.<br />
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Next day, four hours of sleep later.<br />
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On a bright note, I have not experienced the excruciating bone pain that can accompany the stem cell migration. So I am thankful for that. Another patient warned the painkiller they send you home with to treat it makes some people feel pretty weird, so Extra Strength Tylenol it is. It's nice to know. And be prepared.<br />
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Shane is done with work for the day. Hooray! So now we can have dinner and I can freak out and tell him all my anxieties around tomorrow. And get to bed early, hopefully. So I can get to my day long appointment hooked up to the apheresis machine and a bed pan. They say the chair for the patients are quite comfortable, but no so much for the guest. Shane might want to come and go throughout the day. And word is, they don't serve lunch. Which is an awful situation for me But Shane can get us lunch and we can have lunch together. And then maybe he can put up and details about the day. I'm hoping to be catching up on sleep. Pray they get all the stem cells they need tomorrow, or we will have to go back the next day to get more. <br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-72133576804402130562016-11-08T15:38:00.001-08:002016-11-08T15:38:10.287-08:00Greetings Chicago! We come in peace.Shane says I need to start this with a disclaimer.<br />
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Disclaimer. Chemo-brained-vision-impaired-caged-bird ahead.<br />
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Moving on...<br />
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Sorry for the unplanned radio silence. I thought I would have more opportunity to write, and actually I was right. I did. But I didn't count on feeling so un-moti-va-ted. Or lazy, to be blunt. I can take it. <br />
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We've been in Chicago a week now.Maybe it's jet-lag still. Or maybe all the lying around begets more lying around. (Should that b laying around?) I don't know and once again I'm just going to let it lie there because energy. <br />
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It has actually been a pretty full week. For not doing anything except watch the cranes work out our window. And sometimes we get hungry and Shane runs out for provisions. Then we hunker down until the next water/food run. And here we are.<br />
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Shane is working right now. so I thought I could look busy too. I think I might need some headphones and a list of funny sounding acronyms to throw out every few sentences. in addition to that like they've taken the english language and decided to give all the words new meanings. I understand the words I hear, but it makes no sense to me. I f I ask Shane he'll try to explain in words I understand, but I don't want to bother him. Plus we have an appointment tomorrow so not much time. I am content watching the cranes move enormous loads up and down (Malachi would so love the view). When I get worn out from watching all the work, I can go take a nap. Then we have lunch. Then back to work. At some point Shane will call "Hey! They're bringing down stuff for the day. If you hurry you can see them land the port-o-potties!" <br />
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Yes. It is very exciting here. Actually, it is.<br />
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I started the mobilization phase of HSCT last Tuesday, I think. An overnight stay in the hospital with a bag of IV chemo (cyclophosphamide) and whatever else they felt I should have. My favorite was the Lasix(sp?) I think it was called. I just new 3 seconds after the nurse injected it I had to pee! Now! And two seconds after that, guess what I needed to do? The chemo is pretty hard on the bladder, I think in much earlier renditions bladder cancer was a possible side effect, so I really appreciated everything that was done to try and preserve as much as possible. The Mesna, also for protecting the bladder, did not have the same effect of as the Lasix. rapidly repeating trips to the restroom. I thought it a little cruel they gave me the Lasix at bed time. But I cooperated. It does wear off, hence the multiple doses. They also gave me the nice anti nausea medication so I was a little sleepy.<br />
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Shane was with me all day. He went out and brought dinner back for us. He could have ordered off the hospital menu, for $12 or something, but we're here in Chicago so why not enjoy all the culinary options available to us. He ordered up some things from T.G.I.Friday's Which was right near the hospital and offered the option of ordering on-line for pick-up. And which we had never tried before. See? We're trying new things already.<br />
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The next morning, not knowing when Shane would arrive or what he would bring, I ordered breakfast and a coffee for myself. Just as I finished eating, Shane arrived with a latte and some treats. A breve latte to be exact. Funny story but the first time he ordered, the barista didn't know what a breve latte was. So he explained. She remarked that is how she drinks her coffee, but never knew it was called a breve. <br />
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Fast forward, we finish up the hospital stay, get our discharge instructions, its still funny to me how normal I feel having Dr. Burt stop in to check on things. Shane brought the wheelchair in the event I was to tired, we picked up my prescriptions and stopped for lunch at Beatrix. We were free.<br />
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To do nothing. Almost. Five days later I got to start the Granix (unpegged) injections to encourage the stem cells to keep moving so we can harvest them on Friday. It sounds kind of macabre, but they will be kept safe until we come back in a few weeks for chemo bonanza and then we will be reunited. And they will build me a new immune system free of myelin-munching gremlins. AKA MS. Today we went in for blood work and the white cells are dying as they should so we will stay put and wait for Friday. <br />
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Shane has lots of work to keep him busy and in a few hours we can start watching election results. Until then I can sit and watch the fun patterns my eyes think they see on the walls, floor, bed cover wherever. I don't know how it is explained in a what is going on here doctor kind of way. But Charles Bonnet Syndrome on Wikipedia is the best I've found. <br />
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I would insert the link and all that tricky stuff but that requires lots of skills that are hard to do with one good eye-which about two weeks ago decided to stop playing good eye and jumped in the optic neuritis pool. And has resulted in some awkward depth perception problems. I get why they paint curbs a different color sometimes. Pouring a glass of water into a glass cup often results in me watering the counter. So I'm just going with water bottles now. Pre-filled. <br />
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Time to eat dinner and get ready for the evening ahead. I pray its not a long one and everyone stays civil and polite. Given Clinton's penchant for pantsuits, I think I can also say <br />
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"May the best man win!"<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-68283505017557647332016-09-22T21:15:00.005-07:002016-09-22T21:22:09.373-07:00Help! I've fallen And I Can't Get Up!!(Oh the commercials we used to make fun of. Karma.)<br />
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The week-end flew by too quickly. As always. Today we started our 'school year.' The kids are thrilled, mostly. I have one, so far, child who loves everything to be organized, is not at all opposed to doing the organizing, and who said this morning,<br />
<br />
"I'm really excited to get on an early schedule so we can do more things every day."<br />
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I don't know where she gets it from. Or maybe I do. And it isn't me. <br />
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The other kids decided to start a debate team, with the first topic to be the harmful effects of getting up early. Which was not really a debate, as they all agreed with each other. It was a short class, but one I think they will re-hash. Every morning. <br />
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I do know where they get that from.<br />
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Also, early meant 9:00 this morning. We are easing into our new routine. And we had had some late nights this weekend with some cousin visits, so it just seemed cruel to get up earlier. Even at nine there was moaning and gnashing of teeth. But once I had my coffee, I got better. Things started to look up. I was even inspired to hang up the world map I've had for years. OK, before we moved into this house this house 10 years ago,but couldn't decide where it would be most useful and the least likely to get attacked. Too high, we can't read it. Too low, its subject to little ones dividing and plundering the lands with crayons. As much as I'd love to turn the house into a Montessori classroom, it's difficult when the puzzle maps are next to the legos and the pink tower looks dangerously similar to a baby's stacking cups. So the map had been hiding. Safe from the marauding barbarians.<br />
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Cyprian was reading about the Suez Canal and some fighting in South America between Chile and Bolivia and water rights or something. So I finally picked a spot and he helped me tack the world map up. Then he looked the map over and said, <br />
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"Oh, wow. That would save them a ton of time not having to go around the continent." And,<br />
"I can see why Bolivia wanted to get access. Chile has a ton of waterfront." <br />
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Which is exactly what I was hoping he would say. It didn't have to be that exactly, but I was hoping to see the "Oh, I get it now!" look on his face. I love maps. And history. Malachi, of course, noticed the new wall decoration and wanted to know where we live, where his cousins live, and then went on to show off his new found knowledge to the bigger kids, who, not being there when I showed Malachi, were very impressed. And so far no one has taken writing instrument to it. But its early in the year. <br />
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So I'm quite pleased with our first day, and look forward to more. I'm also, maybe a little inordinately, pleased when an email comes in from the co-op we are sitting out this year, asking for subs or textbooks. And appreciating the time and energy we will not be spending on those classes. The last couple years my mother-in-law helped with the driving and sitting in on lessons, and this past year she did all of it. But I still had to write a few checks, and make sure the kids were dressed for public consumption. All of them. So it is a load off to be sitting this year out.<br />
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It is also a load off to not be rubbing elbows, shoulders, or anything, with herds of other kids as we enter the cold-flu season. I've been preparing the kids for some stricter hygiene routines post-HSCT. <br />
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'This is water. This is soap. This is a clean towel....'<br />
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I'm getting really serious this year.<br />
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Malachi and Fi kind of get it. They went out and hooked up the sprinkler directly to the outside hose bib. Cool. But not sure its good for anything but necessitating a new outfit. Which I guess can come in under: We don't bring dirt into the house. Change your clothes when you do come in etc. Or 'Look, Mom! We recreated the Bellagio!'<br />
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But now the sprinkler days are ending and we will enter our 'complete shut-ins for the rest of the season' phase. We had scheduled a last hurrah for tomorrow evening, but ended up canceling. I emailed my doctor and the Chicago Drs as my walking has become increasingly difficult. Which seemed weird to me as I just did the steroids three weeks ago and I thought the effects were supposed to be longer lasting. Apparently, there can also be a withdrawal effect as well, which is what may/or may not be happening. I was offered a shorter course of steroids. I said no thanks. As much as my laundry and bathrooms could benefit from a little energy burst, I can do without the wakefulness and paranoia. Though it is still yet to be proven as just that. Plus I might 'feel' like I could do things I can't/shouldn't. </div>
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Shane ixned me from carrying children up or down the stairs. And I am working really hard on just doing what he asks because I know I'll need it in the coming months. So I promised. Fortunately we have lots of non-wonky legs to transport sleeping babies to their beds, so I think we'll make it. And sliding down the stairs can be fun too. </div>
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I was a little worried at first to ask the Chicago Drs for advice on what/if anything I should do. What if they thought, 'Nah! she's too far gone. Take her off the list.' Then I'd have to crawl back to Moscow and ask them to take me on again. I'm pretty much over Florence. It seems everyone who goes the myeloblative ends up with lots of recovery issues. And that just really doesn't sound good to me. (Funny thing. When I sent my break up letter to Florence, the coordinator told me they are sending a nurse out to study under Dr. Burt at the same time I will be in Chicago. So I will have to look her up.) </div>
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But Chicago didn't cancel me. And we are still going. And not a minute too soon, it feels. Maybe a day later than I'd prefer. But I'll take what I can get. </div>
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Oh. I fell over. DOING LAUNDRY! Of all the risky household tasks there are. I couldn't believe it either. I was squatting down pulling clothes from the dryer, and my not so balanced balance really wanted me to keep leaning to the left and my body said, "that sounds like a reasonable idea. Lets do it!' </div>
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And suddenly I was trying to grab the sides of the very slippery dryer while, in slow-motion, my body kept its course and soon came to rest on the floor. Which was not really so bad. Except my left big toe didn't get the memo we were emergency re-positioning, and decided to try and 'help' by staking a claim and sliding and wedging itself. UNDER THE DRYER. Which really hurt. But I couldn't just pull it straight out. It needed to be turned a little sideways, the toe, not the dryer, which I could not do while still on the floor, so I had to bear hug and crawl up the front of the drier til I got to the top and carefully backed out my big toe.</div>
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I just lay there on top of the dryer. In utter disbelief. And somewhat in amusement. But disappointment there was no one there to witness and be able to re-tell the story of 'Mom versus the Dryer'. And definitely some in pain. I thought if I just stayed away from any toys with wheels I'd be safe. But no. I'm going to have to rethink my cleaning routine. </div>
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Shane and the big kids started a going to a Wing Chun class. Side note: Bruce Lee studied under Ip Man. Bruce Lee also went to the University of Washington and is buried in a cemetery in Lake City, not far from my house. Just some random trivia. They were showing me some of the moves tonight and the right stance and placement of feet for steadier balance etc. I thought, Maybe I should take some classes. Maybe it could help. Shane said no. Not now. Maybe later. I'm good with that.</div>
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com1tag:blogger.com,1999:blog-4330156343020442682.post-59841358734854575402016-09-09T11:45:00.000-07:002016-09-09T11:45:30.983-07:00Happy Holidays! A little early, you might be thinking, but I thought I'd get a jump on the holidays this year. Even years when I have started preparing early, it seems like it was never early enough and now I have a mound of baking, presents to wrap, and the kids will be banging on the door in two hours. And I have completely forgotten the option of just blaming it all on Gilder. So mid-September seems a fine time to start. The leaves are changing. Most of as have unpacked our shoes. A few preppers have located their socks. Some of us have actually worn them. I even picked up a new jacket yesterday! Because winter is coming. And because it feels like a cozy bathrobe, but I can totally go out and get a coffee in it. Not that wearing an actual bathrobe on a coffee run is not acceptable. Plus, if you have a red one (bathrobe), you just look like you are getting into the holiday spirit. Or trying to look like the double tall latte you just ordered. (Oh my gosh! That's so cute. They are putting people dressed up as coffee in the stores. Now I want one.) A person? A Latte? I won't tell you what to think. They can't deny coffee to a festive person like that. Please do make sure your bathrobe is an appropriate length before venturing forth. Let people have the option of ordering their own sticky buns with their coffee. <br />
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I have a serious allergy to anything below 60 degrees. And I'm short. So I can wear my kids' bathrobe on a coffee run and still feel appropriately attired for a meeting with the pope. (Red totally works at the Vatican too!) On days closer to 40, I am ready to grab and go with my "sleeping bag with sleeves" as my brother-in-law calls it. I don't care what anyone calls it, or how it looks. It's long. It's red. And it's my security blanket 9 months of the year. The other three months are just too cold to open the front door. I seriously wore it just this last Fourth of July. Everyone just thought I was being really patriotic. How dedicated is that to wear a big red down blanket in the middle of summer. (She must really love our country!) Red really is a year-round color. I highly recommend it. <br />
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I also highly recommend Tom and Jerry cartoons. (What!? Where did that come from?) I discovered a way to parent, drink coffee, and write all at the same time. In the form of Tom and Jerry. I forgot how enjoyable they are. No snotty attitudes. No violence. No product placements. Just good music and good laughs. Seriously good music. So I have pleasant background noise to boot. So if some of these sentences come out in 3/4 timing (The waltz form Coppelia) you are not making it up. Hungarian Rhapsody. 1812 Overture. From Beethoven to Berlioz, the kids can have an international music lesson, all the while entertained by the antics of a clever mouse pulling a fast one on poor Tom. As kids we always thought Jerry was kind of a sticky bun. But we also learned to appreciate and enjoy quality music. So I consider them educational. Add to that the impressiveness of the cartoons not being computer generated and you've got an entire art appreciation lesson done. Before noon. And you are still in your bathrobe. If you are feeling even more ambitious, you can also expose them to modern art. It's not my favorite, but a little Call of Duty now and then will keep them well rounded.<br />
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And it will give me time to order flowers, which takes an exorbitant amount of time to do. So many places. So many bouquets. So many add-ons and up-grades. And passwords? I'm ordering flowers. Not launching a nuclear weapon. Please don't make this harder than it already is. And why are they calling the bouquets names like "Serenity" and "Peace" . Add to that a card that says "thinking of you" and what is the recipient to think you are thinking of them. <br />
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"I broke a leg. And now they are sending me "Fond Remembrances?!"<br />
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So you finally eenie meenie minie moe in on one. And then they suggest you make it a Deluxe. Or you thought even more fondly of them and go for an Extravagant. Which I think just means they don't use last years flowers. <br />
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Oh, you want fresh ones.?<br />
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Ok. That'll be another $14.<br />
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And you want them delivered to the door. $12. <br />
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In a real vase? Seriously? Fine. Add $10. <br />
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This week? Not next month? Express delivery, that's double. <br />
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You really don't seem like the kind of person who'd pay for same day, so we won't even mention that option.<br />
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And then .........The person you were remembering so fondly they might just get a restraining order put on you, posts a picture of your sweet memories on Facebook. <br />
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And you feel like an ass-hat.<br />
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But you refrain from calling the delivery company and accusing them of sending what looks like an arrangement created when a drunk driver sideswiped a farmers market and pulled the greenery out of his grill plate and stuck it in an oil can. Which would actually get you a larger arrangement and could probably become quite popular . Instead you take out your magnifying glass and confirm that that is indeed the happy little day bouquet you picked out. In the rustic cardboard vase. And hope everyone forgets about it by Christmas. <br />
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I got my HSCT dental clearance this week. Comes complete with a badge and sunglasses. Or it sounds like it should. Now all I have left is a battery of tests next month for pulmonary and heart function etc. <br />
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In addition to fresh minty smile, I also got to promote Dr.<a href="http://www.stemcellresearchfacts.org/dr-richard-burt/">Burt's</a> work. The hygienist has a friend with MS. And knows someone else with Lupus. I was very happy to share the love and hope, and write down information for her to pass on. Tis the season. Don't be a Grinch. Pass it on. <br />
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Speaking of seasons, I think its time to move on from the cartoons. Grandpa is bringing a few cousins over to spend the day. Which makes us all feel like its Thanksgiving. And will most likely inspire some modern art classes. <br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-65837180763799609212016-09-08T09:20:00.003-07:002016-09-08T09:20:59.916-07:00What is Your Name? Who Do You Work For?<br />
It was great fun last week, going with Shane every morning to get the infusions, and then sometimes (most of the time) okay (every time, except one. No, we went that time too.) Out to lunch afterwards. <br />
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Luckily we had the Monday holiday to keep things fun, but he ended up working most of it. And when he wasn't working he was cooking. So I felt very spoiled. But now it's over. And back to real life. Sort of. <br />
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I was really curious to see how the steroids would treat me, as I had never done them in all the 25 years I had the option to. Shane said he just noticed I talked more. By day three I pretty much became immune to the effects, not as chatty, and he kept asking if I was ok? I was actually more than ok. I didn't feel an overabundance of energy, though the laundry pile was slightly smaller at the end of the week. I did notice I just didn't get as tired doing normal things. Stairs didn't slow me down hugely. I could shop, make dinner, and do some chores. <br />
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I felt normal. Like 25 years ago normal. It. Was. Awesome!<br />
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Fortunately, we made all our travel plans while I was on the juice and I felt I could have useful input and offer insightful consideration. Don't remember what they were, but I'm sure they were there. Realistically, I just and watched him make all the arrangements.<br />
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Then day 4. And 5 came. Day 6 my feet started to feel funny, like I'd been standing barefoot in the snow funny. My step was less springy. My legs heavier and cumbersome. I just wanted to nap. Which I did. But things kept returning to"normal". Having taken a brief trip to feeling good land, the return to lame land felt really hard. I wondered if it was always this bad or I had it gotten even worse? I think its the former<br />
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I'm hoping it was a glimpse of what is to come after I've recovered from everything, so maybe a year or two down the road. Not that I'm thinking of taking to rollerskating, ever again, but shoe shopping with real feet sounds interesting. I like how one patient described his new found feeling in his legs as "Positional Awareness". He didn't have to check to see if his feet were on the floor before he stood up. It was real time feed back. No latency. I'm aware no one can predict the results, and currently results are really just focused on not getting worse. But lots of people have wiggled their previously frozen toes or gone on hikes. Or realized at the end of the day they had had gone up and down staircases moving boxes and hadn't thought twice about railings or the number of steps. They had just been living. Without micromanaging their every movement and energy stores. Typically, patients keep a diary of their procedures, the good, the bald, the pukey. But over time updates become less frequent until someone chases them down and asks what's up? And the response is, "Oh, I've just been busy doing things again."<br />
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Day 7 the paranoia made an a appearance. Or so Shane says. But he doesn't know what I know. Some insurance lady calls and says she wants to verify my information. Umm. How about you verify YOUR information. She says fair enough and gives me her name and encourages me to call the main number to verify employment. As if it's her real name. So I ask for her social. No, I didn't really. But I didn't give her anything. So it's all good. And the transplant is approved for up to a year. If she's telling the truth.<br />
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So all in all, it's been an interesting week. I didn't gain much weight. Which is fine. Shane did most of the driving, just case I got a case of the Mario Andretti's.The one day I did drive was fine. So hopefully all the real effects were good ones, in my head, and we have our trips all booked. And I have one billion and twenty philosophical thoughts on this whole process and my kids are reading Aristotle, so how does living/not living/ society/insurance/love of God/love of neighbor/civic duty/Christmas/half and half/happiness fit together? Dizzy yet? Don't worry, it's just the prednisone wearing off.<br />
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Like I said. I have tons of thoughts. But maybe we should wait til everything is a little calmer. And I get some sleep. Fiona has been having her own restless times. Many of which consisted of but were not limited to NOT sleeping for half of last night. She kept whimpering, <br />
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"Mama?! Hold You." or "Mama?! Hold Me!"<br />
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Which, respectively translates to "Mama, I need to lie on your head!" and "Mama, I need to put my chin in your eye socket".<br />
And both of which only afford a minute of non-whimpering. <br />
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I think she might be going through some neurological growth, which I am seriously in favor of, and will gladly support despite the nocturnal near suffocating events. Even amidst the rough spots, I can't help but feel extremely joyful, tired but joyful, when I am nestled between Shane and Fiona every night. And I am resolved to absorb and enjoy it all I can. It is so easy to take things for granted until they are not there. Right now I want to soak up and savor every minute I can.<br />
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In the mean time, Shane will keep me on the sane and narrow path. If this post disappears, it could be because he read it and strongly suggested it is too whacky and the nice thing to do is to let it go. I trust him, so I'd do it. He asked if I felt any apprehension about the whole process. I said no. The kids will be happy and probably enjoying better living standards, under his parents care. If I flip out, lose it, have doubts, get scared, all I have to do is ask Shane what I should do, and I'll cooperate. Shane thinks, given my under-reactions to procedures in the past, I might not even notice all the needles and poisons and will sail through it all without incident. Or maybe he's just trying to psych me up for it. Which is a good strategy too. (He's so smart. Full package, I tell you.)<br />
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He has it arranged with work to work remotely for the non crazy times while he does my shots and I lie around complaining there is nothing new on Netflix, and then be available full time for the crazy times. While I complain I've already watched everything new on Netflix, and I'd really prefer some tapas to the hospital meal, and then do skype calls with the kids to keep their lessons going. So pray for him, especially. I just have to lie there and follow orders. While he takes care of everything else. Which he is extremely good at. And for which I am extremely grateful. Fortunately, we've had lots of practice. I don't think I would do well being on the other end of labor. Shane, on the other hand, excels at it. I'd be like,<br />
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"Soooo, its getting kind of late and I'm pretty tired. do you think we could just pick this up in the morning. After some sleep? And a latte?"<br />
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But Shane will rub my back for hours. Ask if there is anything he can get me. And afterwards make me freshly grilled steak and eggs every morning for weeks, despite working and walking a fussy baby til the wee hours. <br />
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So I think we are pretty well prepared for our respective rolls. But first I have to go and get my dental clearance for transplant. At least, the lady 'said' she is a dentist.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com1tag:blogger.com,1999:blog-4330156343020442682.post-76945962691682838662016-08-31T09:06:00.000-07:002016-09-01T08:41:51.999-07:00AbundanceMy sisters and I had a get together this week. It seemed time for a last hurrah! before the other girls get serious with school stuff and life stuff and the cousins are always begging for play dates. The kids were super excited and played for hours while we discussed gardening, prayer, life, kids and all the good stuff that is so fun to share with people you've known and loved since birth. <br />
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Then, not to end the party too soon I brought some home to stay the night and help me eat all the melting popsicles in my not so freezing freezer. They had already eaten all the not-quite-frozen pizzas so I pulled out the Costco box of popsicles, set them on the patio table, and told them to have at it. I heard one cousin exclaim, <br />
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"This is the best day ever!" <br />
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It felt that way to me too. I'm kind of sorry to see the end of summer. The leaves have been quietly dropping here and there and the mornings and evenings have that distinctive bite, despite the 70 some degree afternoons sandwiched between them. In one of my inspired gardening fits, I bought two blueberry plants. Luckily not for the fruit, because once Fiona noticed there were fleshy orbs that resembled green blueberries and she went to town. But I had bought plants for their fall foliage, described as burning crimson and gold in the fall, so I was not too heartbroken over the stolen fruit.<br />
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Then, on another yard inspired day, I decided to treat the weeds in the weed field. It might have been easier to just pluck the few blades of grass and pretend I had always wanted a buttercup and clover farm. But those come with bees, so I got some week killer and while Shane and the kids were at a retirement party- I stayed home with Pippin who was not over his cold-and decided it would be good to get it done while they were away and off the grass. <br />
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It was one of those bottles you hook up to the hose and the water dilutes the poison as it sprays out in a steady stream. No pumping required. It was going pretty well and as there was no wind I was able to carefully avoid the greenery I did want-blueberries, raspberries, and strawberries. And then it happened. The hose was not giving me enough slack to reach the whole yard so I gave it a good tug. Still not enough. So I pulled harder. The hose had snaked itself around my garden boots in all my twisting and turning to reach every last patch of unwelcome greenery. Suddenly, I found myself, flat on my back, the weed spray gushing straight up like a Bellagio show, but not before taking a nice sideswipe of the yard, whose path included the raspberries. strawberries, and one blueberry. <br />
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I emptied the bottle on the rest of the yard, then got to the business of removing all the newly poisoned plants. I had Pippin come down and weed-eat the raspberries while I hauled them to the garbage heap. Then pulled up the one blueberry and all the strawberries. I wanted to get the yard remodel done before Shane got back and then I could show him my new plans for the yard, maybe without bringing up the whole hose bit. We didn't get it quite finished. I was more sad than he cared. Then I somehow lost interest in that side of the yard and neglected to water the remaining blueberry, so we are getting an early glimpse of the 'fall glory colors', or 'no one care about me anymore colors'. But it will be better next year, and the raspberry canes are spreading already, so all is not lost. The strawberries were due to retire this year anyway, so all in all, we only lost the one blueberry.<br />
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This week we started the IV steroids. So far nothing too crazy has resulted. But it is really awesome to feel energetic again. I never knew. Shane came with me the first couple days so we got to spend some time each morning while the drugs dripped for a an hour. They said it could increase my appetite, and sure enough, the first day I was starving. After only 10 minutes on it. Then I remembered I hadn't eaten much for breakfast. Shane took me out to lunch after wards, and the metallic taste the medicine had given me only made my water taste like grapefruit juice but everything else was fine. <br />
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I did feel a little sleepless that night, then finally took a Benadryl at 1 am. Then woke up at 6. Getting through the day was not a problem and I got more done, in the laundry department, than I had in a while. Which was good , because Malachi, enthusiastic to try no pull-ups at night, peed the bed. Twice. More accurately, he peed TWO beds. His, first. Then he rolled over into Kateri's bed and marked his territory there too. So that was fun. I thought of using the extra energy for a Costco run today, but then realized I have no reliable freezer space. We have a new one coming Saturday, which will be the last day of infusions, so maybe Sunday I'll restock.<br />
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I don't' know how long the side effects last, hopefully at least until then. The nurse did say the third day is when it really kicks in, which is today. Maybe I'll add some a weight work out or something. I cut out my Snickers and half-and-half routine. I don't know when the puffer fish effects kick in, but thought I wouldn't give them too much to work with. Another fun item on the side-effects list was 're-distribution of fat deposits.' So maybe I'll end up with kankles or a pseudo goiter. But I have an extreme weight loss program already set up, in the way of HSCT!!<br />
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Monday morning, I woke to an email from Italy saying they are ready to move ahead and can schedule to begin treatment in Florence in January of 2017. Only a year since we first applied. <br />
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Then later that day, Rebecca, our nurse in Chicago called, to say insurance got back to her and I am approved for treatment in Chicago!<br />
<br />
What?!<br />
<br />
No repeat appeals and denials for months. Just a flat out YES! (I'm wondering if the whole Acthar attempt made them re-think the cost benefits of HSCT. <br />
<br />
I could hardly believe it. It felt too easy. I get HSCT. In Chicago. I don't have to be out of the country for three months straight. Won't have to indenture the kids. The kids will get something in their stockings. She sent over some dates, starting Nov 1st. Two weeks, then I get a break, so home for Thanksgiving. And then back for the last part and done just before Christmas!<br />
<br />
(This is the abundance part. FYI).<br />
<br />
<br />
I feel like I should send out cards with a RIP MS 1991-2016 for my 25th anniversary announcement. (look at that! my math is getting better already!)<br />
<br />
A friend at work has been giving Shane some warnings about chemo and the effects on the brain and how some people come out on the other side with personality changes. I'm thinking cool. Maybe I'll come back nice, or something. Or smart. Or humble. But let's not get head of ourselves. I know I ll come back weak, really tired, once the steroid part wears off, most likely really cranky. Much like Fiona's response to everything on a bad day, I'll respond to any suffering with,<br />
<br />
"I hate that one!"<br />
<br />
So, lots of opportunities for growth coming up.<br />
<br />
But at this moment, with real hope looming so close by, I feel her good day response of,<br />
<br />
"That's my FAVORITE!"<br />
<br />
<br />
Thank you to everyone for all the support and prayers this past year. Please, keep them coming. We are just getting to the hard work. But we are finally here!<br />
<br />
<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-52154544744877852632016-08-27T15:20:00.000-07:002016-08-27T15:20:33.728-07:00Planning My Kids' Schoolyear. You. Not Me.<br />
<br />
But before we get to that, I would like to note, or everyone else to note, this is my second post. This week. So we can all feel really good about that. And time for a latte break. Just kidding. Given I usually only get a few minutes to throw something up here before mommy duty calls, I'll save the latte til I'm done here.<br />
<br />
It seems the school year comes sooner and sooner with each passing year. Fortunately, I've worked on my peer pressure vulnerability til it's become about as numb and impervious to suggestion as my feet. The pictures of other kids posted on Facebook, all lined up in their plaid jumpers and hot sweaters does nothing even remotely to motivate me to grab my lesson planners( mostly because I don't even have those) and start filling out schedules. I admit, the photographs were a helpful reminder to get my paperwork sent in so the school district can't accuse my kids of truancy when they walk to the corner store to grab a sandwich. See? Lunch and P.E. at the same time! Just one of the benefits of homeschooling. The biggest one being not getting everyone dressed and out the door. With shoes on. Their own shoes. Matching ones. And 50 other societal niceties designed to frustrate parents with multiple children and force them to just stay home. Not that much force would be needed. <br />
<br />
<br />
Woohoo! Kateri took the babies to get the mail (after a long and drawn out search for shoes) so I might get a couple extra minutes. Siblings are the best.<br />
<br />
<br />
So I'll get down to business. As we are still up in the air about a date for starting treatment in Chicago, I'm aiming to keep this year very fluid and agile. Think Agile. For sloths. Changes might come about slower than they should and scrums might look more like idea gathering for who should deliver dinner. But I'm also working on the serenity prayer. Or my version. Start with nothing. Anything beyond that is gravy. Oh good. that helped me decide on a dinner plan. It's working already!<br />
<br />
<br />
Since all the formal education able kids can read well, we've decided to play go fish with the babies and set out a reading lists for the big kids. As the oldest ones are more capable and are showing interests in more adulty things, we've had some really fun discussions over some of the election issues and candidates. Since all kids start practicing for a law degree at age three, they all enjoy watching debates. In watching debates, the participants who's arguments came across as the most logical, thoughtful, and clear all had one thing in common. They had had a Jesuit education. Seriously. Even as joke we say someone must have had one. Then we'd look it up. And sure enough. As the Jesuit missionaries went everywhere, there was no country or town that had not been reached by Ignatius's armies. Look it up. It's impressive.<br />
<br />
The kids were so impressed they expressed a desire to be as eloquent and knowledgeable as the people they listened to, so I pounced on it. And said, I'll ask around. <br />
<br />
It seems no one has written a step by step instruction book on how to give your kids a Jesuit education without leaving your house. Fine. I'll leave my house occasionally. Still no book. Maybe there is and I just have not found it. In the mean time, I thought I'd ask everyone if they had come across such a list, or had made one themselves. Shane and I could come up with some of our own lists, but why not stand on the backs of giants when it's possible. <br />
<br />
The internet has made so many things accessible and we are finding it is really helpful to all watch, then discuss lectures/debates/presentations. So suggestions for online resources, or DVD sets etc. would be greatly appreciated. Fr. Spitzer, a Jesuit near and dear to my heart, has most, if not all of his lectures available on-line. So that has been great. <br />
<br />
Shane and I had a lot of fun when we spent a couple weekends watching a Yale professor's <a href="https://www.youtube.com/playlist?list=PL77A337915A76F660&feature=view_all">history lectures</a>. He was super engaging to watch and I think would be more compelling than just handing a kid the whole shelf of Will Durant's History of Civilization. Personally, I think the books are great. Some kids felt they were a little dry. I guess we will have to come up with writing assignments. <br />
<br />
I'm positive about making lists of topics for the kids, along with the resources for them to use so they can keep things going on their own when family life gets a little crazy, or we are all in Chicago for Christmas. Not that I know we will be there. At that time. Hopefully we will hear something back in the coming week. <br />
<br />
We did hear from the Acthar company, and shock of shocks, insurance denied coverage. All $78,000. We could appeal, but Dr. says its unlikely because I have not had a bad response to the cheaper and readily covered IV steroids. So we are moving ahead this week with the steroids. Maybe I'll use the extra energy/wakeful hours , if I'm not busy eating everything, to get the resources sorted out. Or maybe build a shed. But I don't have any building materials, so most likely I'll just sit around and eat frozen Snickers. And sort through any recommended resources anyone throws my way. <br />
Thanks in advance.<br />
<br />
<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-35882425599188012272016-08-25T09:59:00.001-07:002016-08-25T09:59:47.318-07:00Good News, Bad NewsSorry for the hiatus. But frankly, there has not been much to report. Which is good news. Just lazy summer days with few appointments or obligations requiring me to leave the cool confines of my air-conditioned dwelling. I did get some discount plants at the hardware store. Which are great, because most plants probably view my yard as the place where nice plants go to die. So getting ones that are already mostly dead saves us all time, water, and money. I didn't know there was a life support section to the garden shop, but a neighbor clued me in, and one day the bug got me to do something to green up my yard, so I stopped by and found some sprouts in need of some TLC. And a couple bags of potting soil. The babies were very excited to help plant and water. And since, they have been excited to uproot, de-blossom, or just rudely knock over the planters. Every day. Like it was an item on their chore chart. The ONE they remembered to do. I kept watering them, the plants not babies, anyway and one day, I was pleased to finally see the hint of a pink fuchsia blossom. And then, the next day it was gone. I found it plucked, abandoned, and withered on the patio. I guess it serves it right, drawing so much attention to itself and all. <br />
<br />
<br />
But a few weeks later, we went to Chicago, the kids went to Grandma and Grandpa's, and the poor struggling shoots had a chance to grow and blossom. It was only three days but it seemed to be just the respite they needed as I now have blossoms and color bursting forth from both planters!! The fuchsia might need some therapy, as it is still keeping to the shadows. But the other plants give me hope it will come around soon.<br />
<br />
<br />
And then for the bad news, as if tortured plants were not enough. <br />
<br />
Like I said before, we had planned on making our short trip as much like a vacation as possible to a) mitigate any bad news we might be bringing home and b) because it had been about four very full years since we had taken a vacation sans kids. So we splurged on a room at the Four Season's, complete with massages and room service. And then, curtesy of the staff, cocktails in the lounge.<br />
<br />
We only had a few appointments, over two days, so most of the time we just got to relax. Except the MRI. It was scheduled at 4:00. So at three thirty we walked the eight blocks to get there and I got in the line to register. It was at that precise moment we realized we had forgotten the paperwork the doctor wanted filled out by the technician doing the MRI. So Shane hoofed it back to the hotel and I kept encouraging new patients to go in front of me, keeping me at the end of the line for as long as possible. Until I couldn't because there weren't any more. So I had to finally fess up. I think Shane returned just as I started talking, but it didn't really matter. Apparently, the facility had called my cell phone the day before, which had been off for the flight. We arrived late to the hotel so I didn't even notice a call had some in until the next morning. I didn't recognize the number and got weird ringing when I reverse called it. <br />
<br />
Well, it had been the MRI facility confirming my appointment. If the call is not answered and confirmed, the computer drops you from the schedule. So I was no where on the day's list and it was already 4:00. <br />
<br />
The receptionist was super nice and said maybe they could squeeze us in anyway. So we sat down to wait. And wait. For over two hours. Which in the scheme of the applying for HSCT process, was a drop in the bucket. <br />
<br />
Finally, I got to put on hospital garb and wait in a different waiting room. And met another applicant there to see Dr. Burt. Then into the machine I went. It was the longest MRI I've ever had. I actually got bored. They had heated blankets, just like at home, but the machine made new and stranger sounds than the one here. So it took longer for me to find my rhythm and just relax. Finally I did, and even started to dream. Then it was time to come out for the shot of gadolinium, and back in for the final scans. We finished at 8:00 and headed back for dinner.<br />
<br />
<br />
The next morning we headed to the hospital for our appointments with the doctors. Our first one had been scheduled for 9:00, but got moved to 1:00. So we had another leisurely morning. The first morning I had woken to the sound of foot steps in the hall and thought,<br />
'Kids are awake. Must be time to get up.'<br />
<br />
Then I realized where we were. Rolled over and waited to wake up until our coffee was delivered. Because, what's the point?<br />
<br />
Again it was a very short walk, which was nice when Shane had to sprint back to get MRI forms. I had been kind of worried about walking around the city, as it was supposed to be near 80 the days we were there. But I was very pleased to find the city was very shaded by the tall buildings and there was usually a nice breeze so my legs didn't get turned to jelly. AND, no hills!!! So walking was not a problem at all. Though we did no do on any crazy long hikes. So to the hospital it was. <br />
<br />
It felt pretty unreal to be waiting to meet Dr. Burt. I mean, I had heard about and had been following his research for over a year. It felt like meeting a celebrity. And WE had an appointment with him.<br />
I even took a picture of Shane waiting in the waiting room, but it seems my gadgets are not speaking to each other ONCE AGAIN! so I'll have to wait til another time to post it. But I wanted to document such a momentous occasion. Without coming across as a creepy stalker. So a waiting room pic seemed a nice compromise. <br />
<br />
<br />
Finally we got called back. Once in the room we a still had window of emotional space to prepare for what may, or may not be the outcome. Almost like waiting for the judge to deliver his verdict, we sat and joked about how we might react to the news. I wondered if I'd suddenly realize how much I was wanting and counting on getting accepted. And I'd break down in uncontrollable sobs. Which would work for good, or bad news. I'm not really a crier, except funerals or watching my little girls ballet recitals. But I really didn't know what I may have not been allowing myself to admit or what my response might be. And 25 years worth of pent up emotions could be a lot. If they were there. <br />
<br />
The nurse took the usual vitals. Then we waited for the knock on the door. Which came, and Dr. burt entered without any fanfare. It felt strangely like a casual acquaintance coming to visit. <br />
<br />
Dr. Burt was very warm and down to business. Which I appreciate. We were told to bring the copies of the MRI from the previous day, but apparently it didn't matter because he had already looked at them.<br />
<br />
"So. I looked at your MRI" he said, after introductions.<br />
<br />
"And, frankly, you have a lot going on. Four enhancing areas just from the last few months."<br />
<br />
(Only new, like up to 12 weeks, damage shows up as enhanced with the gadolinium.)<br />
<br />
"There is quite a bit of atrophy, which we know cannot be reversed with any therapy. So there's also that."<br />
<br />
<br />
At this point, Shane was expecting him to say, HSCT would be too much for my brain right now. But he didn't. Instead he said, <br />
<br />
"You need HSCT."<br />
<br />
I think it still might not have sunk in. I didn't cry. I agreed I needed it. He said he would do it. We were IN. <br />
<br />
After reading so many people's rejection posts on the forum, I felt like we had just gotten admitted to a super exclusive club. Dr. Burt is very selective in who he thinks could benefit from the procedure. And I was one of them! He does treat patients off-study on a compassionate basis, but one hall mark they look for is inflammation ( enhanced lesions). Meaning, there is still bad activity in the brain, which is damage happening, and though usually not desirable on MRIs, the BAD NEWS, actually resulted in GOOD NEWS!<br />
<br />
The rest of the visit with him was mostly informational. We met the nurse who will be our contact person and will investigate the insurance benefits for us. And if insurance balks, Dr. Burt will do a peer to peer review with them. And hopefully that will end it.<br />
<br />
<br />
Then we left for lunch. We didn't have a ton of time, but we found a cute place for tapas, which was also really tasty. So tasty, that we decided to go back for dinner so we could try more. <br />
<br />
Then back for a meeting with the neurologist, Dr. Balabanov. Who we also both really liked. He had two trainees as well, so we got to enjoy all the probing questions he would ask them, in addition to his questions for me. I really liked his approach, and mild accent. And the informal back and forth that gave you the feeling that it was all in fun, but you knew he was watching carefully to find the evidence he was looking for. But it wasn't like he was looking to see if I were guilty of something, so I didn't feel unnerved. <br />
<br />
The tests went fine. Even the walk up and down the hallway. Seven times test. But he found enough things he was looking for -the MRI is only half the story- and concurred with Dr. Burt's conclusion.<br />
Then he called me stubborn. For not being on any drugs.Which I didn't mind. And asked how I ' Came to dees weesdom' of having babies and breastfeeding for natural therapy. And why, since I was stubborn and wouldn't take the stronger drugs was I now willing to take 20ml of cyclophosphamide, just as an appetizer. <br />
<br />
I told him because it had the best ROI, and is my last, best hope. So "Carpe IVum!"<br />
<br />
<br />
He was satisfied. (More good news.)<br />
<br />
However (dun dun dun, bad news is coming..get ready for it...ok not really that bad)<br />
He wants me to take steroids while we sort out a date for starting treatment to prevent further irreparable damage and avoid a crash. Or, if I wanted less side effects, I could take Acthar, the god of expensive drugs. I had read about it on <a href="http://www.wheelchairkamikaze.com/2013/11/150000-in-my-fridge-and-i-feel-like-crap.html">Marc's blog</a> so was prepared when my neurologist said we'd have to go through some hoops with the insurance company. Apparently $78,000 worth of hoops. Just another demonstration of HSCT being very cost effective for the insurance companies. My neurologist did agree the side effects are far preferable and she would recommend to patients if it were not so expensive. <br />
<br />
<br />
Then I started reading up on dosing and injecting and all that. It is given intramuscularly, though it looks like there might be a subcutaneous version, but not sure which formulation I get. The latter would be no big deal, but the IM practice video made it look a little involved. 'Stab the area planned for injection. Draw back he plunger to check for blood. If blood enters the syringe DO NOT INJECT. Remove the needle and pick a new spot and repeat. Until you are sure you are not injecting into a vein. Repeat morning and evening for 2 weeks.'<br />
<br />
With the IV steroids I could just go and get it done, no insurance hoops. But I would have to go there every day. For three days, or whatever the Dr says. So, it does involve leaving my house. I told the Dr if we don't get insurance approval by Friday, tomorrow, I'll go the IV route. I have lots of house projects if I need outlets for the increased energies. <br />
<br />
<br />
So we wait for insurance to issue it's decrees on both petitions. Hooray, more waiting. But hopefully for the last times. Once we are done with this, other than the follow up care here and the annual checkups in Chicago, my medical outings should be greatly decreased. <br />
<br />
<br />
<br />
<br />
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<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-76380827710533619592016-05-22T17:15:00.000-07:002016-05-22T17:15:20.003-07:00But Wait, There's MoreAs if potty training and housekeeping, and potty training were not enough, we are at the busiest time of our school year. As in we had a piano recital. And the girls have a play. Which means my mother-in-law has been driving them to practice, through horrible traffic, every day this week. I french braided Audrey's hair and showed off my bad make-up applying skills. Eye-liner what? I can't wait to see all the hard work come together this week-end, and next. I'd tell you to come see it, but I think all the shows are sold out. It's going to be that good. The little kids are enjoying all the practicing too. And many times a day we have interactions like this:<br />
<br />
<br />
Me: Fiona, hold still so I can get your new panties on.<br />
<br />
Malachi: I see Fifi's butt.<br />
<br />
Me: Yes, now watch out for that puddle!<br />
<br />
Malachi: (laughs) but I can see her butt!<br />
<br />
Me: Its not a big deal. You guys take baths together.<br />
<br />
Malachi: (walks off) starts singing, There is a castle on a cloud.......<br />
<br />
<br />
<br />
Fiona will climb to the top of the swing set and like a town crier, lets the neighborhood know:<br />
<br />
A more day! A more day!<br />
<br />
<br />
<br />
I'm sure they are all on pins and needles to know what happen will happen tomorrow. But every day, there is still one day more. As announced by Fiona.<br />
<br />
<br />
Events have been so stacked, Kateri had to choose between her piano recital, and play practice. She chose the play. Cyprian had no other competing engagements. Plus there was a cookie reward at the end. Which is the main reason the kids go to these things. So we kept his name on the performance list.<br />
<br />
I gave the babies their baths early recital night, as curtain time was 7:00. And because they had popsicle in their hair. Otherwise I'd have skipped it.<br />
<br />
Malachi was super stoked. 'Homeschooler piano recital! I've got just the outfit!'<br />
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<br />
<br />
<br />
As I had to wrestle Fi into her clothes, I was happy to have Malachi dress himself. I had gotten him new shoes as well as Fi, so he now can get himself completely ready when we need to go anywhere. Which is great. Though some times he could use a little supervision. He insisted on wearing socks with his crocs. Fine by me. Hey, the orange actually matches his shirt! Good job. But then, apparently, for no reason I could guess, he decided to ditch the pair and move on to a new color for the other foot. Still fine by me. It actually ended up matching his red coat. I guess he was thinking ahead. <br />
<br />
<br />
He only stuck out a little amongst the other suit clad children. We sat in the back and he actually did really well, only falling off his chair five times. Fiona was a little more bored, so Shane took her out to walk our old schooling grounds. Where she found a puddle and successfully rendered her shoes useless for the evening and came back barefoot. Also fine by me. I got to sit back and enjoy the recital, with Fi being entertained by left over rain and Malachi trying to see if he could cheat gravity one more time (he couldn't).But it didn't hurt so I let him continue his science experiment. I encourage my kids to find every opportunity for learning, and sometimes inspiration strikes at your brother's piano recital. Very fine by me.<br />
<br />
<br />
Somewhere between Bach, Beethoven, and Burgmuller, Malachi released an important service announcement. He had to pee. Normally he just does his business and we carry on. I panicked when I checked and found he had decided big boy undies would really complete his look. I was so glad he had alerted me to this fact, and had given warning with enough time to slip out to the restroom. He acted like it was no big deal, humming 'there is a lady all in white...'<br />
<br />
Cyprian played well, and I was able to video his performance unmolested, as Malachi was testing the gravitational pull in a new field, several chairs down from me and not anywhere near my elbows. So win-win. (one for gravity, one for me, Malachi 0). And then it was cookie time so Malachi felt like a winner too.<br />
<br />
<br />
Fast forward one week. The play is out and going strong. I got to see it last week-end. Shane gets to go this week-end. I only cried three times. Cyril was dry-eyed the whole show. It's such a good story and all the kids did fantastic jobs. Plus, two of them were MY children. It was a very emotional evening. And that was before I got lost and took 50 wrong turns on the way home. Probably didn't help I hadn't eaten lately. But that wouldn't make a road that was there last time I remembered to disappear. After lots of u-turns and scandalizing/scaring the soon to be new drivers, and showing them how not to do it, I decided to cut my losses and take the long way home. Which worked.<br />
<br />
Shane showed me an audio direction thing on my phone. But that will involve being able to HEAR the directions. So that might not be a help to me. At least I didn't have screaming babies to complicate things. We picked up a snack on the way home. The babies were already sleeping so we were able to crawl right into bed. After my bed time snack.<br />
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Put on weight with this one weird trick! A glass of half and half with a Snickers just before bed.<br />
<br />
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<br />
Which I am happy to report, is working. Shane and I went to a wine dinner last week and I was kind of excited to pick out something to wear that was Not maternity, and didn't have to be nursing friendly. My first thought was, 'do I even have any of those?' And are they totally out of style? I actually didn't care about that second part at all. It was more like, have they been eaten by moths?<br />
<br />
It turns out, I do not own a single pair of jeans I can wear anymore. (Hurrah?!) Ok. So we still have a lot of stretchy cotton fibers. Check. But not the yoga pants I wear every day. Plus, I think the nicer pair had chocolate melted onto it. Ok. A stretchy skirt. So what if I wore it when I was pregnant? It is actually NOT maternity. But then I ran into the ever present problem of shoes. No slippers. Fine. Flipflops were casual-summer-fun, but not the safest for my already numb feet+evening+wine+cold. It was a very warm day but if the event was air-conditioned, or the evening got too cold my feet would turn to blocks of ice and I'd beg Shane to carry me home and that would be a bummer. <br />
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Ah ha! Boots. And a long skirt. And a sweater to add if it got cold and I got chilly, which it did, and I did. So it turned out very well. And some day I might actually get a real outfit that fits my current state. I was super surprised and pleased when the boots actually fit my calves and didn't make them look like tooth picks playing in my grandpa's boots. So as restricted as my wardrobe options had become, I was happy to know I've been on the right path. Eventually I'll add some muscle building too, but my personal trainer said not until I get more reserves added. (Needless to say, Shane is my personal trainer and keeps me supplied with all my nutritionally dense meals as well.)<br />
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I'm sure you are all wondering if we've heard from Italy. So far, Florence is still being coy and playing hard to get. But that's ok. We are comfortable being forward, though there is a fine balance between forward and Creepy American Stalker. But I think so far we are keeping it uncreepy but still alive and very interested. So hopefully that is all good.<br />
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And then today, I got a call from Chicago. Chicago? Who's Chicago? We applied there months ago, then they stopped talking to us. It felt like we were on the 'do not contact list'. I can take a hint, so we Then Shane looked some more and decided we could stay a nicer hotel, a little ways away. So we cancelled the first one and booked the new one. Now, even if they don't accept me, it will feel like a little vacation in the nicer hotel. <br />
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It was kind of a whirlwind of emotions. We didn't hear from them for a month and had almost written them off. Then all of a sudden they are flooding my inbox and CALLING me! We've been revisiting all our correspondences with them ad going over the protocols and I started hounding the Chicago HSCT forums for more intel about what it all means and how soon it might mean anything etc. Some people were accepted at their evaluation. Some people were put into the control group, meaning they are on a second tier drug and if they get worse they will then cross over to the treatment group and get the procedure. If they did offer drugs, I'd have to decline, as all the second tier drugs have some unpleasant long-lasting side effects. And because I'd hopefully be heading off to Florence soon. <br />
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I know/feel it's kind of crazy to be courting so many clinics. At the same time. But the way things move you have no idea who will be able to move the fastest at any given point, or at what point they may stop considering you at all, so you apply and keep the doors open until you get on the plane. <br />
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And then THIS happened!<br />
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I don't have Shane's pictures of their brunch at the Space Needle and the Star Trek event they happened upon earlier that day. But it seems it was a great day ending with a great meal, and cake, at Grandma and Grandpa's house. Then this week, we will finish up some last lessons and parties, and summer vacation will officially start!<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-10924532156224647322016-05-03T18:35:00.002-07:002016-05-03T18:35:52.144-07:00lskjekjtkel;tkjelkjI figured whatever I came up with for a title would make about as much sense as that. (If you are from Reykjavik I meant no offense). But I would like to point out I spelled Reykjavik correctly the first time I typed it. I think that was due to all the Scotland Yard games we played when I was young. <br />
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So many things going on, its hard to keep them all straight. Not that I needed an excuse. It has been very warm today. I mean, so hot the kids didn't want to be outside. Yet when they did, they felt completely comfortable to strip their clothes and pick up sticks as they pranced around the spent embers left over from a cook-out in the fire-pit. And when they tired of that, they took off their diapers. I was alerted to the Lord of the Flies re-creation when Fiona came running to the back door wearing only one shoe. One new shoe. Which I had just bought that day. So even though I would like to have stayed in the cool house, I was inspired by the thought of keeping the shoes together for at least a whole day and followed her out. It was on the way she told me what was going down.<br />
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And I mean down. There was Malachi, completely naked. His diaper was lying in the pile of dirt which is the kids inspiration for all kinds of fancy soups. And in an instant can also be used as war paint. And at that moment was the dumping ground for what used to be in Malachi's diaper. And was now on Fiona's shoe. <br />
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Her new shoe.<br />
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After cursing the poo gods, I cleaned up the yard, scrubbed her shoe (plus Malachi's for good measure) and went back to doing laundry. Fiona followed me up and I could hear her playing and talking about squirrels, her favorite, and then I hear the papery Velcro sound of a diaper being removed! I ran to catch her just in time. Sort of. If by just in time I mean before she painted the carpet and walls with her excrement, then it was in time. I swooped her up and plopped her onto the toilet to see what sewage we could salvage. And if by salvage I mean smear what was on her all over the toilet and seat, then we were definitely salvaged. Oh so much salvaging these days. <br />
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It was at that point I realized I had no diaper wipes to clean her so I carried her to the other room to find some. Finally got her cleaned up and went back to doing laundry. When I put away the towels I discovered I hadn't quite finished salvaging, so I grabbed the Lysol wipes and went to town. I finally finished putting the bed together along with whatever unfinished tasks I happened upon. Leaving plenty for the next day as well. Potty-training two kids is really quite an effort. And I don't actually do much. Just give reminders and clean up messes. I don't know what I am going to do once we've finished. Oh, I know! I'll finally finish the rest of the unfinished tasks I didn't get to. Haha! <br />
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We still lave not gotten our Skype with Florence re-scheduled. Every day goes by and I can imagine all the other prospective patients chatting with the Dr. packing their bags, losing their hair, and going home. I know everyone is busy, but it really is ridiculous how slow the communication is. We applied to another clinic and sent all the required paper work plus more. By this time Shane has put together a comprehensive introduction packet with CDs so there is no latency on our end. A couple weeks later, they asked for more. We sent them more. Two weeks later they said they might have us fly in for an evaluation. Shane said whatever, whenever. We are available. A week goes by. Shane reaches out. Three weeks go by. A month. Nothing. <br />
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So we are left with lots of time to think, re-think, search, and re-search for any bit of information I have not yet learned in all my researching. Of which there is much. Researching and what I have not learned. Sadly, in some exploring, I have come across something that makes my blood boil. Many people have benefitted from HSCT and their MS has been stopped. What has not been stopped is the fallout from all the steroids prescribed for them over the years. Many times I was offered steroids for various 'presents' courtesy MS. I asked if it would help long term. No. It will just help you walk sooner, see sooner, swallow better, or return to whatever is your nee normal sooner. But it has no long term benefit on actual disease course. I totally get why people do it. If you've got a job, and a family to take care of, a few days can be the difference between being able to do that, and not . So, why not.<br />
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I considered it when I had walking issues when Fi was a baby but I decided I'd rather not disrupt her nursing and lose sleep over her being sad. So in the end I went with more sleep and declined. What no one ever told me ever in all the 24 years of relapses, is that an irreversible consequence of long term high dose steroids is AVN , avascular necrosis (not to be confused with bird ailments though birds do have hollow bones, so maybe there is something there.) Avascular necrosis is a condition where the blood supply to the bones becomes clogged and the bones starve to death. And crumble. If you have read <a href="http://www.wheelchairkamikaze.com/2009/05/that-was-then-this-is-ow.html">Marc's blog</a>, you can see how painful and debilitating this is for him, because MS wasn't enough. So far the only treatment is a joint replacement, if you are not too bad off to handle it.<br />
Just to note, three alcoholic drinks a day for several years can also contribute to developing AVN. Again, thanks to pregnancy and lactation, I've also been spared this opportunity. Though it is said to be a 'rare' side effect, it seems its not too uncommon in the MS population.<br />
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I'm thankful I have never partaken of it, though it was not do to the warning labels I was never even given, or the due diligence of doctors informing me of the risks. From what I can tell, not many people were aware of the risks, and now that their bones are disintegrating and they can't walk again, this time not due to MS, say they would never had chosen it had they known. <br />
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Then Shane brought a recent trial to my attention involving the brightly colored unicorn poop MS treatment, Gilenya (Fingolimod). Apparently, when patients came off the pills, they soon after suffered huge relapses, which steroids could not even stop. It opens one up to opportunistic infections, including PML, a deadly brain infection. So if you start it and want to get off the zombie train, you are in for a really rough ride. <br />
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And yet when patients bring up HSCT to their doctors, they are warned. Chemo! That's risky and overkill. And oh wait. It works! Where all the pills and shots can do is cut down on relapses, none can completely stop progression. Which HSCT does for 80-90% of patients. <br />
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So my next project is to research all the drugs used in HSCT and their long term consequences. Most clinics do use steroids in certain phases. Though Singapore does not do this. I don't know what the benefit of doing/not doing it is, or if there are alternatives. I believe it is given with the chemo to help minimizes reactions and not in large enough doses as to put one at risk. So maybe its ok. But I want to understand it all, so that will be my project for the next while as I wait to hear from Florence.<br />
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That and the myriad of random tasks I'll be handed by regular family life. Fiona got hold of and ink pen and decorated a couch cushion. When I whisked the cover off to give it an acetone bath, Fiona crabbed the unprotected cushion and ripped the cover, sending feathers floating about the room. (Again with the birds!) So then I had to hunt down a needle to fix it. I haven't done much sewing of late, its best for everyone that way. I finally found one needle that had rust spots all over it. Yeah! Feathers AND Tetanus. Then the thread kept breaking, though it was advertised as silky and strong. Whatever. I gave up and threw the cushion on the big pile of other unfinished projects. I'll probably take another stab at it tomorrow. Get it? Stab?<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-79830999045773659062016-04-24T19:02:00.001-07:002016-04-24T19:02:45.204-07:00Ring, Ring!Or whatever that bubbly sound is when a Skype call comes in. <br />
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We heard back from Italy and the Dr. wanted to schedule a Skype call with me. I forwarded the message on to Shane. Shane wrote back to me and said it was all taken care of. At 9:00 on Thursday morning we could expect a call! I asked him if it would be weird to have him on the call as well. He asked if I'd read his reply to the doctor. So I went back to his email to the hospital team (from me, like I said, he's also making me look good on paper) and re-read it. There it was. He gave them my husband's (that would be Shane's) Skype name and mentioned he(Shane again) would be joining us on the call. (Cute and smart!) <br />
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Shane told me it would be a video chat. So I immediately hung up the phone and called the salon. Usually I wait until my neighbor points out 'Wow! You've really got a lot of gray!' to get my hair done. But this time I decided to beat her to it. I thought just in case they thought I was too old and might not be able to handle the procedure, I would nip that possibility at the root. I ended up having to take an early morning appointment on the week-end, which I regretted for about 5 min when I woke up Saturday morning. I figured I'd get a hair cut too. I pondered trying something different/shorter/crazy as I might not have to keep it for too long if I didn't like it. Shane thought maybe I should enjoy it long for as long as possible. Which I did. And I'm glad. <br />
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All week we were working on our list of questions to ask. By which I mean the night before, we sat at the computer together and watched a movie. Then we jotted down the questions we wanted answers to. We had looked over the rough treatment plan and discovered a four-week gap between hospital stays. 2 weeks in. 4 weeks out. 4-6 weeks in again. <br />
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I was really excited about the prospect of maybe being able to come home for the four weeks, in the event we do not take all the kids. The four weeks is before your/my immune system is destroyed so it seems like it could work. Other patients talked about travelling at that time and it felt like it would help break up the hardness of not being able to see the kids for 2-3 months at all. Honestly, I'm not worried about all the other aspects of the procedure. <br />
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Nausea? I had the worst morning sickness with Malachi. Most days I was bedridden and threw up every day for 3 months straight. No matter what I did or ate, every evening without fail I had to take a call from Ralf. So awful. <br />
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Losing hair? Big deal. After all the post-partum hair-loss I've really only got about three left anyway.<br />
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Headaches? Those were the worst with Cyril and kept me from doing just about anything. I do feel like I 've had some good training and can't wait to put it all to good use again. <br />
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But now I'm not pregnant. I won't be taking care of a 2 year old as well feeling crummy. I won't be nursing Fiona, so I can take big pain killers when I need them. I can lie in the bed. Read a book. Watch a movie. Someone else will bring me food. I know I'll eat my words when it comes to it, but for now, it all sounds kind of dreamy. Plus, like everyone who's gone before me, the knowledge that this is changing my future for the better will carry me through. <br />
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Shane asked if I thought I'd feel differently about the future and planning things afterward. I had to think about it. I don't know what it is like to plan without the thoughts of 'I hope I can do this/walk/have the energy/drive/eat real food' like I'd like to be able to in order to participate in whatever the future plan might be. Having a host of not-fun surprises that descend on you at whim does make for iffy planning. It feels a bit like living under a Damoclean sword. I don't remember when it wasn't there. Or what I was like then. (Except I could wear high heels. Silly thing. I don't miss those at all.)<br />
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I'm not really sure how to think about it all. I know, in any situation, we always have a choice in our response. Even very difficult situations, which mine really isn't. Inconveniencing, yes. Limiting, I might let it be more so than it is. But not unbearable. I would like to be able to say 'Yes. This is so. But I choose to respond like this.' And not let it influence my choices. I'd like to be the kind of person who finds the bright spot in every situation. Who greets adversity with excitement for a new challenge. Who embraces the unknowns with the enthusiasm of a kid opening a Christmas present. Who sails into uncharted territory with the energy of a sailor looking for lost treasure in a new land. Who delves into the earth like.... Ok I'll stop. Its getting silly. <br />
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But when your Christmas present is 'oh look! Concrete boots! You shouldn't have.'<br />
And you open the treasure chest and find a 'feels like you are riding a merry-go-round for life card.' And you can't quite keep up with the what feels like 50,000 steps, but its only like 3, or 7. No, Blue! And you are not allowed to write anything down, but you need to do them all, in order, to get to the end of the race and get your prize. And even if you do give up you can't remember the way back or which gift goes in which box. Well. One gets really tired of surprises. And is tempted to stop opening boxes. <br />
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Thankfully, Shane is the adventurous sort. He loves opening boxes. And he has the energy to pull me along as well. He was listing out all the options for potential HSCT facilities and dates, trying to get me to focus on what was most important in my choice of location, procedure, and timing. Would I wait X amount of time to get treatment A? or B? Would I take the sooner date or hold out for the preferred location? If AX is to CX as BX is to RQ, then WTF is P? Then my head exploded. So I made a latte and sat down. I know he is only trying to help me clarify things in my mind. But it still hurts. It helped. Florence is still my preferred place and treatment regimen. After the Hutch. Shane has to keep reminding me that ship has sunk. Not that I don't know that, I just keep thinking how much easier it would be for everyone. And now my dream boat, after Shane, is to go to Italy. And they were about to call us!<br />
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We got the kids up early, you know, like 8:45, so breakfasts would be over before we got the call. We sat down with pen and paper (Shane was going to be note taker) and our list of questions. Then I had to pee. So I quickly ran to the bathroom and was relieved, ha ha, to find they had not called while I was gone. <br />
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9:00 came. 9:05. 9:10. I peed again. We checked the time. CET to PST. Yes, we had it right. Maybe its like the waiting room. It will take another 15 min to see the doctor. 9:20. Maybe there was an emergency and they are saving someone's life. That would totally take precedence over the Skype call. 9:30. Maybe they are on Island time. Could happen any time in the next 2 hours. Finally, at 10:10 Shane sent a message to the doctor saying we were still waiting, maybe something went wrong. Then he looked at the account and realized there were three options for calling us. We were on one account, and had given them a different account. And the accounts were not linked. Which for life of me makes no sense. We checked the other account and saw the incoming call at 9:00. And 9:02. Then again at 9:06.... altogether 10 of them! We sent a mail explaining and apologizing profusely and begged them to give us another chance. Ok. We didn't beg. But Darn! If only we'd done X first, or Y (enough with the variables!) sooner we'd have caught them before they gave up and left for the day.<br />
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We wallowed in our disappointment for a bit. Then Shane went to work, because that's what he does. And I went to my sister's house for margaritas, because she had some left over and I wanted to show off my cute hair. <br />
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The next day was Friday. Radio silence on their part. We sent one last email explaining the problem, how it was fixed now, and whatever time worked for them we would make it work. <br />
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The weekend descended like a great big sucky thing. We were frozen (Ok, a frozen sucky thing)waiting for Monday to come and hopefully bring us news. The whole process of applying, waiting, being rejected,(I'm looking at you Heidelberg and Seattle) waiting some more, getting hopes up, messing up, feeling abandoned, but still hoping. And waiting. Is really exhausting. I said before, I don't know how anyone ever gets anywhere in the process without a Shane. It's like a fulltime job. On top of his full time job. We've been doing this for months and were hoping this last call would finally give us the go ahead to start making plans. And now it was gone. Like Christmas just disappeared . There wasn't even a box to not open.<br />
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So we continued on with the days. Doing mundane but necessary things. Cleaning out closets. Grocery shopping. Prepping for AC installation next week. Which is very exciting but also reminds you that you might be here to enjoy it all summer long because you are now at the back of the line and won't be in Florence until 2020.<br />
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Then, this morning I checked my mail, and oh happy day! Just like when you get to the bottom of a box of cereal on a Saturday morning, and despite the colorful picture advertising the fun toy included in every box so you've dutifully eaten 5 bowls, including the sugary dust you shook from the bag, and still there's no prize. You've ingested all those crunch berries for nothing. So you give up, pull the empty plastic bag from the box so you can toss them in the garbage, and there at the bottom of the box is the brightly colored and totally useless plastic toy. Your weekend is suddenly saved!<br />
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There in my inbox was Florence. Saying no worries. We don't hate you. It happens. We will set up a new time and let you know as soon as possible. It totally soothed my restless spirit. Shane was equally pleased. And hopefully soon we will get to sit and wait for the electronic bubble sound of Florence calling. We'll be ready. Again.<br />
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Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-88814379871638463672016-04-14T14:54:00.002-07:002016-04-14T14:54:51.934-07:00More of The SameAfter deleting the post explaining the crazy medical treasure hunt we've been on, I thought I'd leave a few educational nuggets here in its stead.<br />
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This <a href="http://www.economist.com/news/science-and-technology/21688848-stem-cells-are-starting-prove-their-value-medical-treatments-curing-multiple">ARTICLE</a> talks a little about Dr Burt and the procedure. And highlights some of economical benefits of HSCT has as well.<br />
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Dr. Burt does his work in Chicago now. We have applied there, along with all the other clinics. His procedure is different from the one they are running out of the Hutch here. The Hutch is following the BEAM protocol, if you're curious. Florence also does BEAM. Dr. Burt's does not ablate the bone marrow cells. Or as the HSCTers refer to it, it's non-myelo. So its is less arduous, has a faster recovery, and you might not need to re-immunize for all your childhood vaccinations. However, occasionally patients might need an additional dosing of a chemo drug within the first year if there is any disease activity. To rule out this potential possibility many people, me included, try for a clinic offering the BEAM protocol. BEAM has shown to stop progression immediately. The non-myelo does achieve this as well, but a bit more slowly. I think at about the 2 year mark they are even? But don't quote me on that. Or on any of my spelling of big medical words ar terms. I think I have finally gotten the letter order for HSCT down, but sometimes I still slip.<br />
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Seriously, it has been crazy chasing down all the information the various clinics want/need. I don't see how anyone without a Shane on their coordinating/technical team ever successfully apply anywhere. If left only to my own devices, I would have just cried and given up the time I unscuccessfully tried to burn images onto a CD. Or was it a DVD? I don't know, because Shane did it all. So of course it all worked. In my acceptance speech I will certainly give him all the credit he deserves. I am still waiting until all the acceptances come in to write it though.<br />
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Like I said, Russia will take me in a couple years. Germany says 'Nicht!'. As did The Huch, all three times I begged. The Philipenes say 'yes', or 'si' because most people speak English or Spanish in addition to Tagalog. And we are still waiting to hear what Florence says. And Chicago. Everyone said apply everywhere, take what you can get. So we did. And we will. As soon as all the si's and yes's come in. <br />
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Actually Chicago says I look good on paper so they might invite me to come down for a visit and then they would give a final yea or nay. The upside to Chicago is it is not on the other side of the world and insurance might cover the procedure so we would not have to indenture the kids for a year. Good thing we had six of them if we end up going to Florence. at $1500 a plane ticket we migh rethink the whole family vacation thing. And it looks like they suggest you plan on staying about 3 months.<br />
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And Italy wrote back this morning they would like me to set up a Skype call with the doctors there next week. I read it after Shane left for work so I squealed then called him and asked him how I'd do that, I think I have a Skype account but I don't know what the name/number is? I had forwarded the email to him and he already set up the video chat with them. Video chat!!? So I immediately hung up and stated preparing. First I called the salon and made a hair appointment. And now I';m making a list of all the questions I might have. And trying to think of how I'll keep the kids quiet for an hour and would it be weird so have Shane on the call too? He's really cute and much better spoken so they might appreciate it, but maybe they'd like to see if I can manage on my own or not. And would that make me more or less likely to get in? Pity points? I'd take them. <br />
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Too many thoughts to get through. Good thing I have a week. <br />
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Also in preparation, Shane and I went last week to meet with a hematologist here. Though the Hutch did turn me down, the coordinator was super nice and sent me loads of links to studies being done by other facilities and suggested I start working with a hematologist here for follow-up care in the event I end up going out of country. So we met with Michele and she didn't think I was crazy but offered her support and services for anything we might need. <br />
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Just to show our lives are not completely consumed by medical stuff, here are the babies, as everyone calls them, on Holy Saturday. I really liked Malachi's thoughtful stare. And his fancy duds.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-13703473746341339052016-03-30T13:33:00.000-07:002016-03-30T13:33:57.566-07:00How It All Began<br />
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I was a little disappointed at my neurologist appointment last December, when my dr failed to congratulate me on my 24th MS anniversary. Of course, she was probably still in school then so I can see why it didn't make a mark. I'm sure the neurologist who did interpret my first MRI is retired, and or dead by now. So I guess I'll just have to buy my own anniversary gift. But this way I know I'll like it and it will definitely fit. So I guess it's a win. Or maybe Dr S is waiting and has something extra special planned for my 25th, this December!<br />
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It's not like its a huge cause celebre anyway. But I'd never turn down some extra half and half (hint, hint). <br />
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In fact, the original event started out kind of lame. Pun definitely intended.<br />
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I'd been having weird feelings in my legs. They had were heavy and stiff for weeks. Like they had been encased in lead. I remember going to a friend's birthday party and we were playing a relay game and I felt like I was walking like Frankenstein. It was dark out so no one said anything. I enjoyed the fancy Japanese meal, chopped and cooked in front us, like all the other party goers. I just didn't contribute to a win for the relay race. Later my new gait caught my sister off guard and could not stop laughing. So I could have been a good party add-on. If it had been lighter. Oh well. their loss.<br />
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After a few weeks, I think, it didn't go away so my mom made an appointment with our family Dr. He was our doctor for as long as I can remember and he was always very comforting for whatever you were in for. Whether it was ring worm or the fact you couldn't feel your legs. So of course, he was very professional and reserved as he did the office exam. <br />
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I didn't feel too worried. Just mostly annoyed. <br />
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My mom had been reading up on all the potential contenders to cause such symptoms as I was experiencing: Guillon-Barre was the horse we were rooting for. Or possibly some strange tropical foot worm I had picked up in Hawaii the previous month and it could all be fixed with an antibiotic. Even an enema would have been fine, if it would make it go away.<br />
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I can only imagine the ferocity with which a parent might investigate potential life-long mates for your children when you are afraid it might be that no good guy with the earring and no job she might get shackled with. So we searched high and low trying desperately to avoid what was the most likely culprit. MS.<br />
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My mother's sister, my Aunt Moira, had spent some of her remaining weeks at my parents house, but I only remembered a little of her. Her hospital bed was set up in the Blue Room. Which was actually the room I was born in and was later my own for several years. I remembered her eye patch and her slurred speech. And that she had been an opera singer. (Oh, If I could only have inherited her voice instead. Happy Birthday's here would not be such a travesty.) But I didn't. I remember playing on the big cannon at my Grandparent's house after her funeral. <br />
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She was 27 when she came to stay with us. She'd only been diagnosed 9 or so years before that, but my mom is pretty sure she had symptoms long before then. But it was not so easily diagnosed back then. And really all they could do was give you steroids. She was in and out of the hospital for awhile. She'd bounce back and they'd send her home. Then she'd get worse and go back in, probably for another round of steroids. And finally she asked to just stay home and eat Haagen-Dazs coffee ice cream. ( Apparently, we also have love of good treats in common too.) She didn't' want to die in the hospital.<br />
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She rebounded one last time after which she went home to my Grandmother's. Where, finally, with the aid of some morphine, she went to her eternal home. I was curious to know just how she did go, and though I'm sure it was probably not too far anyway, I don't think hastening someone's death is ever anyone's place ,or something you can get over. So just don't. There is always the next morning and opportunities you couldn't dream of in your <span style="background-color: yellow;">current </span>state but you are so glad you got to see that smile, or hear that word, or hold their hand. And you are glad you took every opportunity of embracing life while you could. Even if its hard. Because life is really hard. <br />
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So we went to the appointment and gave the doctor our list of choices. And in is very calm way, he soothed us and said we'd need to wait for an MRI before we could discuss a diagnosis. I remember not being too freaked out, or nervous. Just kind of matter of fact and 'woah, my legs are really funky'. But I still wasn't really worried. As the doctor escorted us back to the waiting room I heard a mention of MS. I could tell my mom was starting to lose it. Which meant of course I was going to too.<br />
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"Mom" I said "don't cry. You're going to make me cry."<br />
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So obviously we both cried. <br />
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But still, there was some hope. The MRI was scheduled for the next day. At some ungodly hour. Like 9 am. Which is anathema maranatha in my family of night owls. I got the instructions of no metal or make-up (as if I 'd get up early to apply any, if I did even wear it, which I didn't). I slept to the last minute then quickly pulled on my stretchy pants after I rolled out of bed and into the car.<br />
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But in that one day I had time to think about the possibilities and things were starting to "feel" real to me and the what ifs? and now whats? came pouring down. <br />
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I'd never really set my future plans in stone. I was 13. There were so many options it was difficult to choose just one. After I read Madame Curie, I thought "great, I"ll be a physicist!" But being not gifted in mathy type things brought me back to reality. I had always felt a strong pull to Mother Theresa and her work. I had sent her some money and a picture of me in my First Communion dress. She sent me back a letter typed out on the back of a prayer card and the picture, which she had signed. But I might like to have my own kids. Would I be able to? Would I ever get married? Would Prince Charming be willing to stop our trusty steed just at that shrubbery up yonder so I could go pee. Again? Would he get annoyed and say no? Would I be able to ask? (Spoiler, he hasn't and wouldn't.) So its all good and way better than the fairy tales I would still lose myself in. Like the one about the Russian-Jewish convert. Which still cracks me up because Shane can speak Russian, is a convert, and I think has some Jewish blood on his German side. And obviously I could have kids. Unless the six living with us are just squatters. But that's ok. I'll take them any day.<br />
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So many thoughts crowded through my brain that morning. The main one being.<br />
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"Man I'm tired. Why couldn't we have gotten an afternoon appointment?"<br />
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I have a knack for zeroing in on the important aspects in a situation. Sleep and what's for dinner.<br />
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My dad met us and we had lunch. Or maybe it was after the neurologist appointment and the reading of the MRI. I'm not sure. I hope we went to Dick's, but I think not. Which in retrospect was probably a good thing. Don't want to taint a Dick's Deluxe with an unpleasant memory. <br />
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We met Dr. Mesher for the first time. He did the typical neurological function exam. And then we got to the MRI. And there were the bright hazy spots on the brain.And yes. It was MS. I think I would have been shocked if it hadn't been. But not unpleasantly. And then came all the questions no one can answer but you ask anyway. Pretty much at all the appointments for the rest of your life. And the answers are all the same too. We don't know. I can't say. We'll just have to wait and see. It's different for everyone.<br />
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Like I said, the only thing to be offered back then was a round of steroids. Or maybe that wasn't offered either, as I was so young. I just remember trying desperately to get him to give me a hint of what to expect and when. Which he couldn't. Then my melodramatic self kicked in. <br />
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Would being at home be a risk to any of my siblings? <br />
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I'm still laughing at that one. Yeah, I'm really not sure where that come from. Maybe I was feeling cut off and thought making it real would....um I'm not really sure what it would do. Maybe I was trying to get out of my kitchen job next week. Or maybe it would be easier to cry for some other reason, like leaving my family, than cry over the crap hand I'd just been dealt. Because it seemed silly to cry over what your cards might be in the future. But you knew the possibilities from your draw pile and they all sucked.<br />
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The doctor kept his cool and didn't look at me like I was a freak and explained,<br />
No, you don't need to be sent to a desert island. Yes, you can have kids. No, there aren't any drugs available yet. <br />
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Cell phones were not so ubiquitous then, so we waited until we got home to share the news. I think I cried some more. Then took a nap. Then we ordered pizza. And some time later another aunt came over with a big pink box of King Donuts. Maybe things weren't so bad.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-47807516465443283602016-03-10T09:16:00.001-08:002016-03-10T09:16:24.797-08:00Oh Where Are My Pictures?<div class="separator" style="clear: both; text-align: center;">
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If you know the hairbrush song from Veggie Tales, use the melody when reading the post title. I do.</div>
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As the title suggests, I can't find any pictures more recent than January. But I did find these ones.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYL9gPNo1r9eZmyJFOAr9Qb90t2bLRSqZ0XC3k7wiyRCt38TA6vwUfg6oqo-cyq7DXrirfPnSJ0Hfgu7tkRLJIdC9UH1fvkUbx08K9sG_Q64L8LKBvWV-xt9boNSU7aowWvt4XjtY6hIBc/s1600/WP_20160105_13_53_41_Pro.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYL9gPNo1r9eZmyJFOAr9Qb90t2bLRSqZ0XC3k7wiyRCt38TA6vwUfg6oqo-cyq7DXrirfPnSJ0Hfgu7tkRLJIdC9UH1fvkUbx08K9sG_Q64L8LKBvWV-xt9boNSU7aowWvt4XjtY6hIBc/s320/WP_20160105_13_53_41_Pro.jpg" width="180" /></a></div>
There's the Christmas tree. Now its gone!<br />
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Every year for Christmas, lately, we usually agree to go in together and get something bigger than would fit in a stocking. And then leave it at that. And then Christmas morning chide the other person for getting stocking fillers too and good thing we both did or one of us would feel silly. So this year we went all out on a new bookshelf. We have needed one desperately for a long time. The shelves in the library and the bonus room have been full and books have been piling up on the floors and window sills. But it's not like it's dirty laundry. Although a few socks could have snuck in between Don Quixote and The Federalist Papers. Honestly, I have read neither of those. I did watch the Man of La Mancha but I'm pretty sure they never made a movie out of the latter book. But it makes me feel well read to have them on the shelf. We decided to put the enormous book case next to the huge clock so neither would feel inferior. And its been a great addition. </div>
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Having the books more accessible has made for so much more reading and conversation. And conversations about reading. I'm so glad we finally got them. </div>
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Speaking of addition, I decided to do some subtraction in the kid's school supply department. Fiona and Malachi got into the school cupboard and spread the zillion flashcards just waiting to be strewn about like rose petals. So I summarily swooped them all up and prepared to dump them in the recycle bin. Kateri begged me to save them so she could put them on the free table at homeschool class. Because someone might want them! She did. No one took them. I guess we are not the only ones. </div>
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Fiona got a back pack for Christmas, I wasn't trying to do a Christmas theme but I guess that's what you get when all your pictures are from early January. She and Malachi put on their packs and go adventuring around the house. Which is pretty much the cutest thing.<br />
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And I would be remiss if I did not mention the fact that it is MS awareness week. I think it got lost in International Women's Day? (I guess that is a thing) which was earlier this week. Actually from the headlines it sounds like it MS awareness week is actually a month. So, back off bitches! The orange t-shirt gimp brigade is here.<br />
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But not here. Ever. I don't wear orange. And not just because I don't want to look like a convict. <br />
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Speaking of orange shirts, quick up-date. The hospital in Florence is still reviewing my case for HSCT. The hospital in the Philippines said yes they could fit me in, in June or later. Moscow said yes but not until 2018. Mexico said yes but no date yet. But I'm waiting for a yea or nay from Italy until I sign up for anything. Shane made a handy-dandy spreadsheet for me. color-coded and everything for where we are in the process for each facility. And I might make an impassioned plea to the investigator at the Hutch - which is still red-just to make sure they are really serious about last two NOs they gave me. but there are more greens now on the chart, so its looking real. <br />
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Hopefully soon we can start working on our Italian. I'm glad I started when I was young. Now I can ask anyone "andiamo aprendere un café?" if they'd like to go for coffee). But it will have to be on a Lunedi or Martedi. I forgot the other days of the week.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-87753009279882006232016-03-05T16:30:00.000-08:002016-03-05T16:30:24.969-08:00Introducing My Stunt Double and HSCT updateMaybe. An astute and avid reader of my blog, aka Mr. Factchecker, aka Shane, aka my Husband who I think only reads a post if I link to it from Facebook, pointed out last week that the post I wrote seemed really confusing, so I decided to try and clear some confusing points up. And instead I deleted it. Not on purpose. I typed up some pre-ramble to add to it, then watched in horror/confusion/disbelief as my finger hit the delete button. Then when it asked if I was sure I really wanted to toss the post again I watched my pointer stretch itself out and almost reluctantly hit Yes. And it was gone. I'm not sure why I felt surprised. It was really like watching a car crash, something beyond your control. Except it wasn't. I probably only have about 20 minutes before the kids come in from outside (Oh wait, here they are) so I am not going to try and re-create the muddled mess it was. And you are welcome. <br />
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Things have been kind of busy around here. If you did happen to read the mysteriously disappearing post, it was about a "new" therapy for MS and other autoimmune diseases called HSCT, or Hematopoietic Stem Cell Transplantation. It's not really new in and of itself, its been done for certain types of blood cancers for quite some time, but since it's "off label" it has to go through all the hoops before it is accepted as a legitimate therapy for MS. Meaning most insurance will not cover it yet. And it costs up to $400,000. <br />
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For the procedure, you have your own stem cells extracted. Then you are given chemo. Once your immune system is 'mostly dead' they swoop in and save you with the extracted stem cells they harvested in the beginning. The stem cells are naïve, that is, they don't remember the taste of myelin and don't go around chewing on your central nervous system for another fix. Sounds great to me. <br />
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There are two versions of HSCT -Myleoablative and Non-Myleoblative. The first wipes out your immune cells, including the bone marrow cells. The non-myleo leaves the bone marrow alone. They have had amazing results with both versions, though the non-myleo sometimes needs a second round of chemo some months after. Initially it requires up to a month long stay, or longer, in a hospital. With the myleo HSCT it will require re-vaccination for your past immunizations, generally not with the non. <br />
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Post HSCT the myleo version results in a complete halt of MS activity, the non tapers off over a few months or longer but eventually gets there. It does not do this for everyone, but around 80% or more, which is a far larger percent and with a far more drastic stopping of progression than any of the drugs your neurologist can give you. <br />
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Lemtrada is a newer drug just out for MS. You gotta love the names they come up for these drugs. The actual name of the drug is alemtuzumab. Under another name ( Campath) it has been used for the treatment of certain types of leukemia. It was pulled from the market in 2012, then returned with a new name, Lemtrada, and a new price tag. Basically it went from about $2,000 a dose to $20,000.<br />
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The story is you get 5 days of it. Then a year later, 3 more days. I don't know if they know how long beyond that it keeps being effective. But it kills off certain of your immune system cells. And then does it again a year later. So you are constantly being knocked down. It makes much more sense to me to just get it all done at once, and then start to build up your new immune system and keep it going. It also comes with some fun cancer risks and leaves the lucky recipient open to a host of opportunistic infections. Sounds fun, right?<br />
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While were on the crazy-name train, due out this year is ocrelizumab. Another immune suppressing drug. As we discussed all this with my neurologist I made the brilliant connection- alemtuzumab-ocrelizumab. They both end in MAB. And they are both monoclonal antibodies. MAB. My neurologist was quite impressed when I popped out that gem. Then she let me go back to watching Sesame Street.<br />
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And she very nicely took the paperwork from a clinic I am applying to and filled out the information they want. The previous week she ordered another MRI with gadolinium, despite the fact I'd just had one in December without contrast. It was worth it as there was an enhancing lesion, which you can only see with the contrast agent. As we were filling out paperwork at home Shane asked,<br />
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"So is it wrong of me to hope you have an enhancing lesion?"<br />
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All the gadolinium does is highlight any recent damage, meaning there is new activity and most of the clinics prefer to treat patients with active MS. Funny name for what causes you to become less active in real life. But we found one, so yeah me!<br />
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After giving her the paperwork we did the whole walk the line, touch your nose touch my finger routine. It was ....fun? There was no math so I was happy. And I didn't totally flunk the balance part. Also good. She did say she'd I've me between a 4 and a 5 on the EDSS scale. (You want to be as far from a 10 as you can) <br />
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So after our second trip to the office, we finally had and submitted all the paperwork to the hospital in Florence!<br />
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What? Florence? I thought she wanted to go to Germany? Or the Hutch?<br />
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I did. But the Hutch said no. And after a couple weeks, so did Germany. But then we found Florence. They do the same procedure (BEAM, it's called) of myleoablative HSCT that the Hutch is doing and Germany does as well. Rumor on the Facebook HSCT forums is that Florence has a little more wiggle room for who they will accept than Germany. There is no other hospital offering the BEAM protocol. The Philippines is just about the same as BEAM. the others are non-myleoablative, (Russia and Mexico). <br />
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But the advice is, apply everywhere and take what you can, when you can. So Shane did. I got to push the send button on the final application for Florence. So I had a part. And I got to read his correspondence so I got to see how well he presented me to them. They are in for a fun surprise if/when we finally get to meet in person. But They've seen my brain so I'm sure they are prepared. Or in for a fun treat. Russia, the Philippines, and Mexico all said yes but, again I want the full meal deal. One and done.<br />
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So we stopped looking at neat places to rent in Heidelberg and are looking at some crazy cool places in Florence and the Tuscan countryside. Not sure what might actually be the result of it all, but it is fun to think about the kids having a great time while I get some serious alone time. <br />
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I have also thought of turning this blog over to Shane, this is the stunt double part. He's a good writer and can communicate real facts in an effective way. And it wouldn't take him days to get the pertinent information concisely packaged and posted. But he has a job, so its kind of iffy. <br />
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Sorry if this still doesn't make sense. For the real story on HSCT check out <a href="http://www.wheelchairkamikaze.com/search?q=HSCT">WHEELCHAIR KAMIKAZE'S blog</a>. Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-79654538001634089602015-09-17T19:13:00.000-07:002015-09-17T19:15:14.677-07:00New ThingsOr, things that should be old by now but are new for me. And , no I am not talking about any new technology. Though speaking of technology, for some reason blogger is not talking to my One Drive, and I am really not interested in sorting out any more petty squabbles and digging into 'he hit me first' stories that can, and do continue for days. So I'm going to ignore it until they sort it out themselves. Sadly, the internet is the loser as I can't post cute pictures of my super cute kids. But no pictures does not preclude me from poking the keyboard for a bit, as I actually have a few minutes before somebody draws blood and I have to clean it up before the stain sets.(Hydrogen peroxide for all your children's activities. Works on urine too.)<br />
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Fiona is napping so I was going to read more of Fr Spitzer's book, but the 'atmosphere' is not conducive to thinking so I figured I could let the gelatinous gibberish that is my brain's offspring lately coagulate here for a bit instead. My apologies. Especially since I can't make it up to you with a (Fi)cture. <br />
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I really don't know how other moms find time to write. Or eat. Or brush their hair. I have yet to find a way to facilitate any independent, as in just me, activity that does not necessitate copious amounts of hydrogen peroxide, bleach, or new wall board. Or toilet seats. <br />
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Speaking of toilets, Shane, who was consoling a naked Malachi as he was pining for his brother's tape measure, just leapt off the couch and exclaimed,<br />
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"What is that on your finger?!" Then proceeded to have the couch and his, Shane's, pants sniff tested to make sure 'that' was not anywhere else. It wasn't. We, or rather Shane, scrubbed Muffin's hands and put a diaper on him. Apparently, he had used the toilet (yeah!) but still needs some help in the clean-up department. <br />
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I just stayed back and watched the whole event. I had been typing for three minutes so I figured some catastrophe was bound to happen any minute. It's not so bad when you can look at such events as a disinterested third party. Or highly entertained by it because its always fun to see people freak out about what you spend most of your day dealing with. Not that Shane freaked out. He's used to it by now. <br />
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It also helps if you do get called in for the clean up. Yesterday I decided to get a jump on the clean up and went out to buy new toilet seats. (Sorry for the toilet-themed post. That's just a consequence of having little boys.) Also a consequence of said boys having difficulties trying to pee in that microscopic basin that keeps moving all over the room just as you lock on to it. Every visit to the bathroom is a like new game of Asteroids. So off to the hardware store I went to try to restore some decency to the bathroom. (You are welcome.)<br />
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I had no idea there would be so many choices in the toilet seat department. Also, I had absolutely no idea they made some with built in night lights! Seriously? I don't need another thing to keep supplies with batteries. Of course I took a picture to show Shane.<br />
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His response was,<br />
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"Really? That's so cool! Did you get one?"<br />
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Needless to say I did not get anything that would encourage more nighttime activity. Or boys guzzling gallons of water before bed to increase their trips in the dark. Just like 'free' time, sleep is a highly valuable and scarce commodity these days. But maybe I'll remember when it comes time to fill Shane's stocking. <br />
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He's earned it this year. Especially for taking care of the poo finger. <br />
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I was going to share our academic plans for this year but this post has taken me 5 hours, as many cups of coffee, twice as many diaper changes (for the kids), and every other sentence I get questions like 'what's for dinner?' 'do you know where my book is?' 'what's the air speed of an unladen swallow?' <br />
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In a nut shell we are doing less. I signed the kids up for lots of classes and the week before we were to start I cancelled them all. Except two. The little kids are continuing piano, and as this is Audrey's last year for Drama and Trudy offered to take her to that, we kept that as well. But nothing early in the morning! <br />
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I can't believe I didn't so it sooner. As in years ago. It takes so much energy to leave the house with all, or even some, of the kids. And even though Shane's mom has been doing the driving most of the last couple years, it is still an effort to make sure everyone is up and breakfasted and has TWO shoes in the morning. Matching was optional. Plus, I was realizing that outside classes were taking up all the schooling energy I had and leaving us with nothing for the work I would like to be doing with the kids. <br />
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Add to that two toddlers, dentist appointments, grocery shopping, and occasional doctor appointments, I'm swamped. As energy is scarcer and scarcer these days and ignoring that fact turns me into exhausted,grumpy, none-fun mom, I finally felt it was time to speak up. <br />
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I brought it up to Shane a week before we were to start, bracing my self for the talk I had given myself every time I felt overwhelmed, and honestly, scared, by it all. He listened and then said,<br />
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"OK. I do think we need a more family centered and directed school year , not focused or restricted by what classes are available. And something that will not suck all your energy. Let's do it."<br />
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None of the,<br />
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'oh come on. Don't be such a wimp! My mom's been doing all the driving any way so its not really any effort on your part. This is what we are supposed to be doing now, for the kids.' Which is what I had been expecting. <br />
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So the next day, I joyfully wrote cancellation checks to all the teachers and only had to rip up three of the five, for clerical errors. not sure if it was just the fact I had to write so many numbers that tripped me up or if I was just excited to be unsigning up for the stress that would have accompanied all the classes. Plus, knowing I would not have to do all the tuition checks again in a month was pretty exhilarating. Either way, every time I realized it was not going to happen I was thrilled and over the next week felt more and more assured we were doing the right thing, planning the activities and subjects we would be doing instead. Shane felt the same way, so I must be right. And the first day of nonclasses while the other mom's were scrambling to get kids in cars and diaper bags and lunch bags packed, I was still in my pajamas drinking coffee. Not because I was being lazy but because we had the crappiest night of sleep we'd had in a long time with both babies waking up just before midnight and not going down again until 2:30am. But the entire time Kateri and I were tending to the babies , Shane still had work in the morning so I thoughtfully did not bug him, all I could think and rejoice about was the fact I didn't have to drag all the kids out of bed in a few hours.<br />
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I had always felt resentful of the schedule I had forced us into in years past. I felt a tension between what the baby(ies) needed and what participating in the kids' classes required i.e. being away from home all day. Camping out in the car for hours. Coming home exhausted at dinner time with no energy to cook or clean. Finally recovering just as the next week started. Looking back at those years I think what an idiot I was. Or maybe that is just the Now Me imagining doing it. Maybe the Then Me did have more energy and a bigger brain. Definitely had better hair. <br />
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My definition of homeschooling has definitely evolved over the years. And I am sure it will continue to do so. Right now our plan feels a comfortable fit for the family. I'll share some more details on curriculum etc later. Shane took the kids outside to play so I want to use the time to get dinner going and if the post got any longer I think we would all die of boredom. <br />
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Oh, look at that! Shane, the peace broker, finally got things talking to other things, resulting in my being able to post a picture. This was from last week. My dad's sister, Sister Judit, was here visiting for a short time and we got to host her for lunch. She is a nun with the <a href="http://sacredheartsisters.com/">Society Devoted to the Sacred Heart ofJesus</a> (see if you can spot her). She was previously in Hungary and before that Taiwan so it was great to see her here again. Now she is in California, they get sent wherever there is a dire need, so hopefully there will be more opportunities to see her. <br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0tag:blogger.com,1999:blog-4330156343020442682.post-55495027603036481562015-09-10T15:17:00.001-07:002015-09-12T09:35:12.336-07:00Tradition...<br />
....just because its how its been done for years doesn't mean it's the best.<br />
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I thought the story of the girl making a roast for her mom was great illustration of this. The girl invites her mom over and decides to make a roast for dinner. Her mom is watching as the daughter takes out the roast and readies it for the oven. The girl takes a knife, slices off an inch from each end, and throws the scraps in the garbage.<br />
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Bewildered, the mom asks,<br />
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" Why are you wasting good meat?"<br />
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Having seen her mom make roasts over the years, the bewildered daughter answers,<br />
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"Because that's how YOU always made roasts!"<br />
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To which the mother responds,<br />
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"Yes, but I only did that because my roasting pan was too small."<br />
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Speaking of Tradition, capital T, there has been a lot of buzz about Pope Francis' visit to the US, with people trying to predict what he will do and say to try and get with the 'in' crowd and modernize the 2000 year old behemoth of a Church. As if it needs to be turned into a place where people can do whatever they feel like and still pretend to be part of the Catholic Church. Because, if not, someone might be offended or feel excluded, or heaven help us, think about it and change their behavior. Why change yourself when you can just re-write the Ten Commandments? Oh, that's so much better. Its so refreshing to be unfettered by the Truth, given by, you know, God HIMSELF, and which the martyrs have been dying for years to protect and hand down to people foundering and struggling to find their way as best they can in this crazy world. <br />
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Yes, lets just rearrange the directions on our compass and see where it gets us. Well, spoiler alert, but guess what? IT'S NOT HAPPENING!<br />
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Here's the deal. There is Truth. If you accept It and promise to live by It to the best of your abilities, welcome to the Catholic Church! If instead, you would like pick and choose your favorites or throw out your non-favorites and continue to live like it's all optional, welcome to the 30,000 and growing other denominations. If you can't find one that's just right for you, don't fret. You can start your own.<br />
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You cannot change Truth to fit your liking, comfort level, or wedding plans. <br />
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Abortion?- Killing is still a no-no.<br />
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Contraception?- See above. Along with the teaching on sexuality, fertility, and people are not to be (ab)used as recreational, or occasionally useful means to whatever end I think will make me happy at this particular moment, but which has, in reality lead to a mutual disrespect for women and men, a devaluing of children, and the disintegration of the family. Happiness? Not so much. Heartache, misery, abandonment, lack of respect and de-humanization of everyone? Just read the news. <br />
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There is a lot of confusion about freedom these days. In most people's minds freedom means freedom from. Freedom from responsibility, restrictions, morals, ethics, standards, and pretty much anything a person doesn't like or want to do. Sounds like a 2-year-old's fantasy playland. But, also like a 2 year old with no boundaries, there are serious consequences. For society and the individual. And despite all the shiny rhetoric and glossy promises, you will be a slave to so many masters you can't tell up from down. But you are free, man. To be yourself. In all your self-indulgent, self-destructive, egocentric ways. But someday you can get all upset about immigrants not having a place to go to escape real abuse. Like someone trying to KILL them. So, you know. You care. Obviously. And you can relate. Totally. <br />
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Perceived slights remedied with misguided charity is all the rage these days. With disastrous effects. <br />
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If you need help figuring out what/how your testicles/ovaries were created for there is help. 'Gender reassigning', sterilization, putting on new clothes, demanding people call you by a different pronoun depending on your mood and a host of other 'solutions' will not help you understand who you and your place in the universe . Sex/sexuality is huge. So huge in fact, there are rules around it. To protect the person. The persons. And the person who might exist as a result. It cannot be manipulated without disastrous outcomes. That is how BIG it is. And that is why the perversion and misuse of it is so toxic. To all of humanity and to the struggling individual grappling with the understanding and implementing of their God-given sexuality. <br />
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Women wanting to be priests will be disappointed too. Again. As they are every time and always will be. Amen. Not sure if or why this might make it into a family-focused event, but disgruntled women seem to keep trying so it might. <br />
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Marriage will not be redefined to 'include' anything and everything attempting to mimic the first God-given sacrament. <br />
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Homosexual behavior will not gain equal status with married behavior. Individuals with homosexual inclinations will be reaffirmed as people, deserving of love, respect, dignity, and their place in the world, as they always have been and just as every other person deserves as well. Also, not sure if/why this topic might try to make an appearance but everyone wants to try and steal the spotlight so it might happen. <br />
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Divorce will still be not-an-option. Just to clarify annulment is not Catholic divorce, but a declaration that this never was a marriage in the first place. Maybe one party was already married. Or was planning on not keeping their marital promises before they were even said, lied, to the other. <br />
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So I am sure there will be lots of disappointed parties to bemoan the fact that 'The Church hasn't changed in 2,000 years!!!' <br />
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And it won't in the next 2,000 years either.<br />
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In breaking with some tradition, we've decided to structure our school year a little, or a lot, differently this year. I'm hoping it will allow for more time for focused work at home and more energy for me to facilitate the work. It has already reduced a fair amount of stress felt in former years by the old way of doing things. And was actually suggested by my mom several years go. Slow learner, I guess.<br />
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I thought this article on <a href="http://news.sciencemag.org/health/2015/09/melatonin-could-help-treat-multiple-sclerosis">melatonin and MS</a> was super similar to <a href="http://nanisblog.blogspot.com/2015/07/new-research.html">this one</a>, written by yours truly. <br />
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See, I wasn't making it up. There may have been lots more published in the past few months, but as my Surface is lately being occupied playing The Croods , or Despicable Me 2, I was not able to see the news feed Shane set up for me to peruse the latest templated articles. Not sure how much of a loss that is. But I'm a big fan of both The Croods (seriously a lot of life lessons in this one) and Despicable Me 2 (what is NOT funny about yellow twinkles with that make sounds just like my 1 year old and have the same sense of humor as my 2 year old) so in the end I think I got a good deal.<br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com1tag:blogger.com,1999:blog-4330156343020442682.post-46759480911504161282015-09-01T14:33:00.001-07:002016-02-20T13:17:34.730-08:00Litany of Fi<br />
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It is heartwarming to see how much Malachi dotes on Fiona. At first I was a little sad his infancy ended so quickly, but seeing how he responded to a tiny baby, being not much more than a not so tiny baby himself, the was never any sibling rivalry. I am sure that will develop over time, like as soon as she is the same height, but until then he is the super protective, doting, older brother.<br />
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His morning greeting and exclamations upon seeing her have become a bit of a ritual. He sees her and runs over to give her a hug. Then says, <br />
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"Baby so cute."<br />
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Everyone present responds, <br />
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"Yes, baby is so cute."<br />
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"Why baby so cute?" Malachi continues.<br />
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If the attending persons are distracted by a hot sip of coffee or something and the silence is too long, he is happy to nudge them by stating the answer as a question.<br />
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"Because God made baby so cute?"<br />
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Coffee or other distraction finished, all present repeat:<br />
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"Yes. God made baby so cute."<br />
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If it is a special Fi(st) day, or if he just wants to use his favorite three letter word, so pretty much every time, he adds:<br />
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"WHY God make baby so cute?"<br />
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Then because they are all movable Fi(st) days, there are a variety of appropriate responses. Depending on what cute thing she is doing at the moment.<br />
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Then Malachi pats her hair and gives her a kiss. Fiona picks up a f"oam Nerf sword and hits him on the head, the benediction is concluded, and everyone is dismissed. Due to be repeated whenever Malachi feels moved by the spirit to do so. So every time he sees Fiona. Which we totally get as she is pretty much the cutest thing in the world. <br />
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It is refreshing to see how much he adores her, and sort of offsets his more rough (aka pooping on things that are not toilets) side. We're still working on that. I got him big boy undies and he likes them. Not so much to wear. Yet. And he is pretty scrupulous about making sure the toilet seat is set to HIS seat when he empties the contents of his diaper into it. But it's not a vent so no complaining here. Baby steps.<br />
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Speaking of non-baby steps, Fiona is learning a ton from Malachi, thankfully not the vent trick, yet, and her baby years are already feeling fleeting. It seems every day she is performing a new feat of awesomeness. Climbing up the stair railing? Got it. Opening doors? Thank goodness the doors to the outside were already gated. Climbing up the playset ladder? (I actually nailed that one. With repurposed rabbit cage wire walls to block the escape holes So even though I refer to them as 'the babies, we really don't have a baby anymore. Which is bittersweet. I thought <a href="http://www.theuglyvolvo.com/whomever-keeps-switching-kids-im-not-looking/">this</a> really summed up how it feels to watch your babies grow. I am sure when I pack up all her baby clothes I will ache for my stinky <a href="http://nanisblog.blogspot.com/2014/09/youve-been-fid.html">Fi</a> at the same time celebrating all her milestones and new found abilities. The 'roll it' part in her 3am pat-a-cake routine gets me every time. I have yet to video tape it, a hazard of not being the First Born, but now that I'm thinking of it and as she is just up from her nap maybe we'll give it a try. <br />
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Also, if you haven't, but wanted to enter, leave a comment <a href="http://nanisblog.blogspot.com/2015/08/happiness-and-book-giveaway.html">here</a> to get a chance at winning copy of Fr. Spitzer's new book, Finding True Happiness. I got a few more pages read and am looking forward to reading several uninterrupted, in like 5 years, pages. But so far I really like it and will probably write more about it someday. <br />
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<br />Briana nanimom@outlook.comhttp://www.blogger.com/profile/09751362405199919252noreply@blogger.com0