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.