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 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.

Monday, December 12, 2016

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 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.

Friday, December 2, 2016

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.

Wednesday, November 30, 2016

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!

Thursday, November 10, 2016

Just 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.

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.

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.

Like ' Hey here is some anti-nausea medication. Take it every eight hours when you need it.'

It should also have included  "but be warned, it is also a killer constipant."

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.

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?'

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.

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.

Next day, four hours of sleep later.

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.

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.

Tuesday, November 8, 2016

Greetings Chicago! We come in peace.

Shane says I need to start this with a disclaimer.

Disclaimer. Chemo-brained-vision-impaired-caged-bird ahead.

Moving on...

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.

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.

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.

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!"  

Yes. It is very exciting here. Actually, it is.

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.

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.

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.

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.

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.

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.

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.

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

"May the best man win!"

Thursday, September 22, 2016

Help! I've fallen And I Can't Get Up!!

(Oh the commercials we used to make  fun of. Karma.)

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,

"I'm really excited to get on an early schedule so we can do more things every day."

I don't know where she gets it from. Or maybe I do. And it isn't me.

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.

I do know where they get that from.

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.

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,

"Oh, wow. That would save them a ton of time not having to go around the continent."  And,
"I can see why Bolivia wanted to get access. Chile has a ton of waterfront."

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.

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.

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.

'This is water. This is soap. This is a clean towel....'

I'm getting really serious this year.

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!'

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.  

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.

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.)

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.

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!'
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.

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. 

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.