Monday, July 11, 2016


After a week of pretesting, I was able to come home for a week. Thankfully, this week lined up with when my extended family get together was so I was able to see a bunch of people before my immune system is compromised. I even managed to play a bit of softball before the heat did me in. I did end up pushing it way too hard and paid for it later but it was nice to be out doing things.

Day 1 of mobilization was to start by being admitted to the hospital early in the morning, it took almost 4 hours of waiting. While waiting, I met two other nice couples who were going through the treatment as well. Apparently there are quite a few changeovers on Mondays so we all had to wait longer -not sure why we had to be there so early if this is a known problem but whatever- and then my paperwork showed me coming in the next day. Once we got checked in, we started chemo almost immediately. I had two days of chemo and high dose steroids as we discovered from my MRIs during pretesting that I have "a whopper of a new lesion" according to Dr Burt. Honestly, I don't think the chemo affected me that much. The steroids hit me hard as I wasn't able to taper my dose like I normally do at home. So I would just crash really hard and just have no energy for the first few days of my release from the hospital. After a few days, I think some of the low energy was a result of the chemo but was still better than a bad MS day. I did get some nausea but I couldn't tell it apart from the motion sickness that the new lesion was causing. Overall, my nausea was very limited despite being from multiple causes and was managed by occasionally sipping ginger ale. I hope the next rounds of chemo go as smoothly!

After the two days in the hospital, I had to stay in Chicago for almost two weeks before my stem cells were harvested. I had some follow up appointments but for the most part had a few days of free time before I started 6 days of Neupogen shots. It hurt as the shot was going in and then I would get some muscle tightness in the area but the shots were going pretty well for the first few days. Day 4, bone pain hit and I mean hit, it felt like I was ran over by a truck. One minute I was doing fine and then bam I couldn't stand. I'm very glad that my mom was here for the portion because the pain builds up in your hips and you think you are doing ok, it hurts but I can still move around, and then surprise you lose all ability to lift yourself from the toilet. Thankfully I only had one day of bad bone pain but during that time it felt like my bones were being crushed, just being squeezed from the inside. Norco wasn't cutting it so they allowed me to take Aleve as well. The nurses weren't kidding when they said it works better for bone pain.

The day before my stem cells were to be harvested I lost the vision in my right eye and had a lot of vertigo. It made it really difficult to stand or do anything. Apparently the Neupogen shots can cause an increase in symptoms and with the inflammation I had from the flare up they weren't surprised it happened to me. Not super fun but I survived with the help of my mom and husband.

A note about caregivers to those going through the process:

A lot of people ask whether or not you really need a caregiver during mobilization. And the answer is it depends, certainly some have done it alone but I think it may be tough to do alone if side effects kick in hard. My husband came down for the first two days to help get me out of the hospital and all set with groceries. He was gone for a few days and then came back to Chicago on the weekend so we could visit. It was nice to see him and still be able to do things like meet up with stemmie friends to watch fireworks at Navy Pier. He also started stabbing me with the Neupogen shots. Due to the loss of function in my hands, I would not have been able to self-inject. Also, it kinda hurts and I'm not sure I wouldn't wuss out if I had to do it myself. My mom came down after he left and helped me with the remaining shots. A caregiver is nice for companionship as well but I was meeting up with others in the trial pretty frequently so it always felt like there were people around. To me, the time went by super fast and it was hard to keep track of the days. I think a caregiver for at least some of the time would be a good idea. 

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