Wednesday, August 17, 2016

 So I'm back home now and things are going pretty well. There have been some minor issues come up but we knew that was a possibility. I was struggling with some high fevers which made thinking more difficult. Now I have have Strep throat and maybe some other infection; needless to say, I have fallen behind on blogging. I know people want more details on how I am doing and my experiences in the hospital and it is coming, just slowly.
In the mean time I found some more pictures from my Stemmie Birthday I thought I would share.

Stem cell infusion starting

Alan did a wonderful job watching over my infusion to ensure everything was done safely. I was fantasized watching the stem cells start to enter my IV. It is a bit hard to see but the stem cells are in plastic bag and look like strawberry flavored applesauce. You can see some of the infusion pump in this picture. 

I know in a previous blog post, I mentioned how my Stemmie Birthday was cool but didn't really feel like a life changing moment. I didn't have the emotional reaction that others have had and after talking to some other vets, I realized that as good as this moment was it isn't about this one day. To me, this whole process has been pretty life altering. So please don't mistake my previous comments, I am eager and hopefully for this treatment. I think it is my best chance at moving forward with my life that will hopefully be less impacted by MS. 
Stem cell Birthday donuts to celebrate
And don't get me wrong we did celebrate the Birthday. It just didn't hit me as hard as it did others and as much as I was expecting. It was still a good moment. 

Saturday, July 30, 2016

My achy breaky heart

 Coming into this treatment, we knew it might be challenging on my heart. I have a pre existing heart condition called Mitral Valve Prolapse which basically means that sometimes my heart valves leak and I have some extra beats thrown in. For about 1.5 years now, I have been on the same medications with no side effects or complications. I underwent additional testing prior to starting the chemo and both my normal cardiologists and the cardiologists at Northwestern agreed that this was the healthiest my heart has been in a few years and signed off on the treatment.

Most people only get an EKG done the days they are receiving cytoxan but I was having at least one extra a day. Plus anytime I had a cough, fever, or felt like my heart was racing we would do another one; for good measure, sometimes a chest ct or X-ray in addition. Nothing ever really showed on the EKGs but I'm glad they were playing it safe and checking.

The other problem with my heart is resulting from the MS. When I was first diagnosed with MS, we didn't really know about the Mitral Valve Prolapse and I went on my first disease modifying drug Gilyena (so neither my cardiac issues or the drug's cardiac issues were really known at this time). After being on the medication, for almost three years it begin to modify my natural heart rhythm and would cause me to have more skipped or extra beats. It took a few ER visits to figure out what the problem was and that it was likely the medication causing. Soon after I switched to Teciferda and my heart mostly went back to normal but we added medicines to help keep my heart rate my consistent. After a few episodes of passing out, we learned that the MS impacted the way my brain and heart communicated. Basically my brain doesn't always control my heart beat that is supposed to so when I do things like stand up my heart rate will raise 130bpm while my blood pressure drops. Anytime that my blood pressure changes, my heart may not respond correctly.

During the chemo portion, my heart was doing pretty well. So well that some nurses didn't want to give me heart medications because my vitals were normal. Yeah it turns out that the key to keeping it normal is taking my medications on a regular schedule.
Side note: no nurse should ever tell a patient that I don't want to give you your meds. Yeah, I will be talking to the hospital about that nurse. There were too many times I had to argue with her to get basic things taken care of but I'm trying not to dwell on the negative.
I also received daily boosters of magnesium, potassium, and other electrolytes and fluids to keep my heart functioning as normal as possible.

Shortly after receiving my stem cells back, my heart rate was dropping into the 40s. After it had been lower for a day or two, the doctors were getting worried. One of the medications I take for my heart lowers heart rate (reducing the strain on my heart resulting in less leaking) but it also helps regulate my blood pressure. I agreed with their concern and so reluctantly cut that medication dosage in half. My heart rate rose to the 60s and things were stable for about two days. Then my heart started to protest the lowered dosage. It would feel like there was pressure on my chest, that my rate was pounding or racing, and sometimes I would feel like I was having trouble breathing. One day I was able to walk a mile with the gang after dinner the next day I couldn't walk four without my heart freaking out. Another serving of an EKG with a side chest X-ray showed no other problem. I had received two rounds of platelets that day and they were concerned I could have had a reaction or infection. I was put on oxygen and bed rest, ask your doctor in the morning about going back on the full dose. Either later that night or the next, sorry they all kinda blend together, I woke up a little before 5am thinking I might be getting a migraine. My head was pounding and I just felt off. The nurse came in to take me my vitals, my heart rate laying down was over 130bpm, my blood pressure was wacky but I don't remember the numbers, no fever, but my pulse oxygen was less than 80%. I was put back on oxygen and bed rest. The team rounded in the morning and I was greeted with "Congratulations, you feel like shit. It's a good thing, it means you are going home soon". I know he was trying to lighten the mood, and I did find it amusing, but while laying there on oxygen going home was the last thing I was thinking about. At least there was no debate about me going back to my full dosage.

Monday, July 25, 2016

Stemmie Birthday

On July 19, I received my stem cells back celebrating my stemmie birthday. It was kinda of an odd experience, everyone kept congratulating me and wishing me happy birthday which is cool, just different. I have been processing the day over in my head and everyone acts like it is a big deal but I didn't really do much, like it was just kinda like any of the other infusions that I have been getting. I think I might be holding myself back from experiencing these feelings of joy a little bit but I'm scared of what the future holds. Don't get me wrong, I think this is best chance at treatment. I don't know what this treatment holds in store for me and I'm hoping for the best but I will take whatever I can get. I would love, absolutely love, if this treatment were to stop my MS and reverse disability but if it just slows the disease down then I will take it. So it is hard for me to think of my stemmie birthday as this life changing event because I don't know what will happen and kinda don't want to jinx it. And even if does work amazingly, does this one day really make a difference? I mean I could technically go through this procedure without getting my stem cells back I just wouldn't have an immune system for really long time. But at the same time it is nice to have a moment to celebrate. So speaking of celebrating, time to get out of my head space....

My stem cells arrived from storage in a big super cooled tank. Apparently they were frozen solid and if you drop them in that state bad things happen, good thing I wasn't handling them lol. Once they thawed out the chaplain said a quick blessing and crossed me with the holy water we got from the Vatican. Then we started infusing the stem cells. Somehow in all of the excitement we didn't really get any pictures of the stem cells but it basically just looked like a bag of applesauce. It took about twenty minutes and then Jon and I celebrated with donuts. The whole thing went pretty smooth.

Later in the afternoon, I did get some nausea because for some reason this process and make it smell like you are exhaling creamed corn. It didn't bother me at first but then it started to get funky. Once I gave in and took the anti-nausea medicine it went away. Of course this was after my wonderful husband headed back home. Sorry babe for making you smell that all afternoon 😝

Wednesday, July 20, 2016

All done with chemo!

Finished up all my rounds of chemo with thankfully few side effects. I really only got a little bit of nausea and was able to manage it by sipping ginger ale. I have been able to eat a pretty normal diet even managing things like curry but tomato sauce apparently doesn't agree with me but this may also be affected by all the high dose steroids they have me on.

While the chemo has treated me pretty well, the rATG (or rabbit) hasn't been. Everyday I have had a different side effect from it. The first night I had these really weird muscle spasms and numbness. It wasn't like what I have had experienced with the MS. It felt different and was patchy and spreading. The staff never saw a reaction like it before and we had to call Dr Burt in the middle of the night. It ended up going away after more medications but it took awhile. After that they started pre-medicating me with more Benadryl because I was having so many reactions to it. We determined that it wasn't an allergy, just lots of side effects. Silly rabbit was affecting my heart rate and slowing down my thinking among other things. As soon as we started the rabbit I would start getting the side effects. The rabbit was causing me so much trouble that Dr Burt considered changing the schedule and adding more chemo and swapping out Day -1 which was supposed to just be rabbit but we ended up not doing that.

I was starting to get some type of throat infection so they started me on antibiotics and antibacterials a few days early. They gave me two other mouthwashes to use. The cultures haven't come back yet, and one test takes a month to get the results so I'm not real sure what the point was,but the medications seem to be working and the infection is clearing up.

I have been having some fevers but not the ones they are worried about it and this ha become less of an issue now that I'm done with the rabbit. I had to have two units of blood because my hemoglobin was low but that seems to have stabilized. My electrolytes have been low the whole time I have been here so I'm pretty much constantly getting Potassium or something else infused. My heart rate has been resting in the 50s and they are starting to get concerned about it but the EKGs and other test show my heart is acting fine, just differently. It feels fine now but sometimes they don't want me moving around too much. We are keeping an eye on it and just waiting to see what becomes normal.

All in all, the side effects have not been too frequent and have been pretty manageable. I know that there are ups and downs and just trying to take things as they come. I hope things continue to go as smoothly as they have been.

Monday, July 18, 2016

I was admitted to the hospital on 7/14 or Day -5. The days are negative until I get my stem cells back on 7/19, after that they are positive until I'm released somewhere Day 8-10. Admission this time went much more slowly, hurray for less than a four hour wait but the PICC line was still bothering me so we had to adjust it and do X-rays to make sure it was in the right place. Eventually everything got settled and we got chemo started in the afternoon followed by rATG. I really have no idea how the rATG works but it is something that is derived from rabbit antibodies that helps suppress my immune system more.

I spent a lot of time on those two days making sure that my medicines where in the system correctly and that the pharmacy wasn't giving me things that I was allergic to. This turned out to be quite a process. I was told to bring the meds I take at home with me as this reduces costs for us and then I know I'm not allergic to them. I'm not sure why but some of them were entered into the system incorrectly and I really had to watch to make sure that I was getting the right dose at the right time, not the easiest process with the chemo fog I might add. Then I find out that the meds aren't being checked before they are given to me to make sure I'm not actually allergic to them. Um kinda a big deal. It is straightened out now but it is a little scary how that all was allowed to happen.

Dealing with the silly medicine issues were more difficult than the chemo, glad it got straightened out.
Battling the PICC's just a flesh wound


After harvest I was home for about a week resting then testing my limits then trying to figure out what to pack for a three week hospital stay. All in all it was actually a pretty relaxing stay. Got to fit in a few more things that I won't be able to do once I don't have an immune system.
A mohawk!

I headed down early for a wig fitting. I was debating saying anything because I wanted you to be impressed with how quickly and beautifully my hair grew back lol. Technically, all my hair hasn't fallen out yet either we just buzzed it really short when I started to get weird, painful sensations but once I undergo more chemo it should all fall out.

It was a bit of a fit to get it covered by insurance which is silly because they said they would cover one of anything at any price as long as it was in network. The kicker is that they don't have a list of in network providers so I kinda had to make one magically appear. But I ended up having a wonderful experience at the place and will soon have a wig. Any guesses as to what color I picked??
As a bonus they also had this head balm that it perfect for my itchy shaved chemo head which had been making it difficult to sleep.

The next day I had an appointment to get my PICC line placed, it's basically a multi port iv line that stays in for a long time. It was a bit of a mess. I didn't know when to come in until the day before and then had to wait over an hour to be seen. This all would have been fine if it were the extent of problems.... I ended up spending over for 5 hours there for what normally takes about 90 minutes. It started getting quite painfully as the line was being placed which apparently isn't normal and then I'm less than 5% of people who have a problem with their veins spasming. This started to push the line out so we had to bandage it up and wait for a radiology operating room. It took longer than they expected to get the room ready and in the mean time I managed to spasm a few more inches out and bleed all over the dressing. They whisk me off to the rather scary looking room, did a bunch of scans and proceeded to basically ram the rest of the line up my entire arm. That was definitely not what I call a little pressure. I left unable to move my right (dominant) arm for the rest of the day. I know can move it somewhat but still don't have full range of motion. Thankfully the pain has decreased. I can't yet feed myself with that arm but good thing I have all that practice from breaking both my arms.

Sunday, July 17, 2016


This actually happened two weeks ago, now, so I'm playing a bit of catch up. I'm currently in the hospital receiving chemo.

Going to harvest my stem cells I was doing kinda rough from the Neupogen and the flare up. I lost vision in my right eye, was having trouble walking and standing, and still had a bit of bone pain going plus a migraine from not sleeping well. I was given more high dose steroids which helped combat some of these issues. Overall the process went pretty well. I harvested 18.42 million stem cells which is much more than the 2 million required and more than what they estimated I would produce so I guess those pesky Neupogen shots were worth it. Although I'm still hoping I won't have to do anymore of them.

I had a bit of a hard time getting the Vas Cath line, how they were removing my stem cells, placed in my neck. My heart condition makes it so things like lidocaine don't totally numb like should. Yeah let's just say I could feel them cutting my neck and it wasn't a pleasant feeling but you just have to lay them and take because if you move it will be even less pleasant.
Vas Cath site (once removed)
The harvest process itself was very cool to watch. There were lots of whirling colored tubes. At the vein check appointment, which for me was showing me the clinic and then slapping the bruises where I just had labs taken, they explain that you can what tv. What they don't explain is that the machine is quite loud and there isn't a remote for every room. I didn't mind because I just wanted to nap. I didn't want to come back and harvest over another day so we just stayed late to get it done. Meanwhile we are trying to figure out how to fix my wheelchair because it had broken on the way over. It was getting to the point where the wheel was catching on every little bump and digging in, essentially dumping me in the process.
Me and apheresis machine 5
I was very weak after harvest and it would have been helpful to have a working wheelchair but we eventually made it back to the hotel. I wasn't able to use the walking sticks that I normally do because the way my neck was bandaged up after harvest caused my neck to be pulled to one side and I couldn't exert pressure on it. I ended up having over an inch long scar plus the incisions from where the sutures were, quite a bit bigger than my counterparts for some reason. It has now been two weeks and it still hasn't healed up totally but at least it is healing evenly now. I won't gross you out with a picture of my Frankstein-ness.

It's over 19,000 cells
It took my a few days to bounce back from the steroids, the harvest, and letting me neck reset to a neutral position but I found myself generally having more energy when home. I managed to go for almost a 6 mile bike on the Fourth of July. I haven't been able to ride a bike in over two years; although most of last year I had a broken arm(s) and was recovering from shoulder surgery but I'm overjoyed to know that it is possible. I was also able to go on almost a 2 mile walk without my poles. Before the chemo and steroids these aren't normal activities for me particularly given the rather hot weather.

Now that I'm in the hospital talking to the doctor team they say that these improvements are usually signs that the overall transplant will go well and that I'm more likely to rebuild strength/skills and hopefully have lasting improvement in disability 👍👍👍👍. I would really love for that to happen but I will take whatever I can get I just need this disease to slow its roll (pun slightly intended, get it...I was in a wheelchair).