Friday, April 7, 2017

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 y hear 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  balmy17, 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 head 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 you at random and sending you back to square one just for fun. 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 to 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.