The Good, The Bad, And The Wet

I 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.


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.


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.

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.



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.

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.

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,

 "I'd probably go to the restroom about now."


"Ok", she said. "Now I want you to-"

"I just peed" I interrupted her.


"OK. That was about 7 oz. You definitely have high pressure. Let's wait until it calms down and we will do it again."

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.

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.



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.

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.

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.

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.

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.

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.

Man, 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.

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.

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.


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 (D-MER) 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.


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 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.

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.

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.

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.

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.

And Now For Something Completely Inane

At least it will be the when I tell it.

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.

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.

When it comes to hair...? WEll there is only so much you can do with this.

It is a little longer now. So I tried the scarf  Kateri knit me. The scarf is cozy, and kind of matches my  hair.

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.
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.


Then there are my nails.

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.

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.


Then several other nails followed suit and demanded spackling.

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.

Shane took one  and asked,

"So did you even try?"

So then I had to remove the offending polish. 

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. 

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.

There. How's that for inane? It's enough for me, too.

I 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.)

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,

 "What about a cog in a wheel?"

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.

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.


And that was it. And we have been home for over six weeks. And I thought I'd fill in the gaps.

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.

In no particular order:

 Quick kid photo before we left.

 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.

 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.

All dressed up for a stroll around the hospital floor. And around. And around.

 And once my white blood cell count was pretty much non-measurable my own previously harvested stem cells.

 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.

 Then we had a birthday party.  With decorative lighting and a candle we didn't light.

Shane said I could start at zero.

 Shane brought me  slice of pizza and I ate the whole thing.

 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.

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.

Shane came to pick me up and we said good-by to the hospital.

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.

  

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.

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.'
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.

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.

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.

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.


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.

 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.

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.

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.


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.

But that's just my thinking right now.


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.

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.

More stories for another time.



 Now its time to start prepping for Holy Week.

One Foot Through The Door

I 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.

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.

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.)

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!

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.

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.)

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.

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.

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.

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.

As is my appetite. I think Munchausen syndrome might be taking over now. Good thing I planned ahead and ordered lunch already.

The Groundhog Day Effect

Ok. Not really. Yet.

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.

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.

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!


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.


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.


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.

(Look who showed up and found the picture.That would be Shane. Not pictured here.)

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.


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.

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.
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.


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.

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.


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.

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.

I sighed and called the nurse. I said my catheter is leaking.

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.


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

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.

And 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.

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.
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? 

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?

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.)
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.

 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.

Who is the chair for?

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.

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.


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?'

Could be fun for the whole family!