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.

Abundance

My 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.

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,

"This is the best day ever!" 

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.

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.

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.

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.

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.

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.

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!!

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.

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!

What?!

 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.

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!

(This is the abundance part. FYI).


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!)

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,

 "I hate that one!"

So, lots of opportunities for growth coming up.

 But at this moment, with real hope looming so close by, I feel her good day response of,

"That's my FAVORITE!"


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!