It’s officially been six months since I had my Bone marrow transplant and time feels like it has somehow simultaneously flown by at warp speed, and stretched on endlessly. This is the halfway point to my next post-transplant milestone, which is to make it to the one year mark. After one year my odds for long term failure-free survival increase greatly, and I will hopefully be six more months closer to feeling more like my old self.
When they told me before the transplant that I would need to adjust to a ‘New Normal’ and that it would take at least a year for me to feel anywhere close to my old self again, I shrugged it off. I was so focused on the immediate goal of surviving the transplant itself, I told myself that I wouldn’t be like that. I would be different. I’d be back to work in a few months, somehow my hair would miraculously grow back at warp speed and in no time it would be like the transplant never even happened. Boy was I wrong.
I finally get the Hickman line removed from my chest which was definitely exciting and felt like I at least got to take a bit of a step forward, but the rest of the last month or so has felt like a continual cycle of taking one step forward and three steps back. Every time we think we’re getting somewhere with my Graft Vs Host Disease, it flares up again or shows up somewhere else. Because GVHD is essentially my donor cells attacking my organs and tissues, its behaviour is similar to auto-immune disorders like lupus and arthritis, and is often treated in similar ways. So I went back on a high dose of steroids to control the last flare up of GVHD in my liver and mouth, (which brought back my moon face and endless cravings for donuts) and my GVHD responded really well to this. Everything looked like it had calmed down, but this time when we tried to taper down the steroids, it immediately flared up again, so we had to go back up.
At this point I had spent most of the last few months on high doses of steroids which is extremely hard on your body. Steroids essentially are a massive shot of cortisol to your system, which reduces inflammation, but put you in a constant state of overdrive. It feels like you have all the energy in the world and sleep is something you don’t really need, let alone get. You’re anxious, overly distracted and emotional for often no reason. It’s like being in constant fight or flight. Continual use puts you at risk for things like diabetes, thyroid issues, adrenal issues, and osteoporosis/osteonecrosis from bone loss which can lead to needing replacement of hips, knees, shoulders etc.
Since we really don’t want any of those things to happen, we decided to add in what they call a ‘steroid sparing’ agent called imuran to my treatments, and then we will try again to reduce the steroids. It’s an immune suppressant which will hopefully supress my immune system (and therefore my donor cells) enough to achieve a similar response to the steroids. It came with a lovely black box warning about increasing my risk of getting secondary cancers which made me more than a little uncomfortable. Since it supresses your immune system I will also have to go back to my post-transplant protocol for infection control and be careful about exposure to people/germs etc. It kind of seems like at this point no matter what option I choose leaves me with risks, so I just trust my team and do what they tell me is the best choice.
We’ve been doing a lot of tinkering of pills and doses, I’ve had a lot of surprise symptoms and issues pop up, and I still have to get my pentamidine treatments for my lungs and see other specialists about my post care issues, so at six months out I’m still spending 1-3 days a week at the hospital depending on what’s going on that week and that can honestly be hard. I want to be able to help my husband more with his business, to get into some kind of routine, but it just feels like I’m only really able to take it one or two days at a time. Every week I cross my fingers as I drive into the city and hope for the best, but the truth is I never really know what’s going to happen and the anxiety can sometimes feel crippling. Will my counts be OK? Did my liver respond? Is the GVHD back? Or worst of all- Is the cancer back?
I try my hardest to put my fears to bed, but it can sometimes be hard. As a transplant patient, we get told to report every symptom, anything we think is out of the ordinary. Often these things end up being nothing, or are side effects of drugs or GVHD, so you sometimes feel silly telling your doctor or nurse about every little thing. But sometimes they can be serious or life-threatening and that’s why we do it. So last week after two weeks of regularly walking every day, when I was suddenly unable to walk on my right leg properly, I suspected something was wrong. At first I second guessed myself, and thought maybe I had strained my calf while walking, but it just didn’t feel right. My calf muscle felt like it had the worst Charlie-horse in the world. I couldn’t put any pressure on it or it felt like my muscles would tear apart. It wasn’t swollen, hot, red or anything else that would happen if it was a blood clot. But something in my gut told me it was.
I luckily had a clinic appointment the next day, and expressed to my doctor that I felt there was definitely something wrong and although he felt it was unlikely to be a blood clot based on my lack of other symptoms and relatively low platelets, he ordered an ultrasound for my leg the following day. By this point walking was nearly impossible, and Bill had to drive me into the hospital. I felt bad about him taking time off work and having to drive into the city, but I figured at least if there was nothing wrong, I could put my mind at ease. We were both equally surprised when the technician started, and said “Yeah you definitely have a blood clot here.”
I was sent back down to my doctor with a diagnosis of DVT in my lower leg, and we immediately started treatment with blood thinners to break the clot down before it had the chance to move to my lungs and cause much bigger problems. Now I’m waiting to see a thrombosis specialist who will help me figure out what caused it and reduce the risks of it happening again.
Overall I’m feeling much better mentally and emotionally, but I’ve definitely pulled back a bit from both social media, and socializing in general while I try to get used to my ‘new normal’ and distract myself from the roller coaster of recovery so it doesn’t feel so stressful. I don’t leave my house a lot other than to go to the hospital to reduce my risk of getting sick. Something like the flu, chicken pox or shingles can be deadly for a transplant patient.
If I haven’t replied to your messages on facebook, or your texts/phone calls please know it’s not you. It’s me. I just need some time and space to adjust to all the changes happening in my life, while I do my best to take care of my mind and body. I don’t want anyone to think that I’m a jerk for not replying, or to think I am avoiding them or being rude. I’m just doing the best I can, and some days that means all I accomplish is just going for a walk, having a shower and eating a meal before I’m physically and mentally exhausted.
I honestly did not anticipate that recovery would feel this way or take over this much of my life. The chemo brain, the fatigue, the physical changes are real, tangible things that I underestimated greatly and am still trying to adjust to. I promise that eventually I will emerge back into the world and will be my normal, chatty, responsive self. Until then I hope you will forgive me, and will still be there as my friends and family when I do. As always, sending everyone much light and love.
