Day +25

I was released from the hospital last Tuesday officially, and I’ve been out of the hospital for almost a week now. It’s been nice to get back to a bit of a routine, to start cooking and eating real food, go for some walks and test out what my ‘new normal’ for the moment is. I really hate that term, but I haven’t found a better way to describe it yet! I was hoping to get to go home over the weekend to see my mom for mother’s day and her birthday at dinner at my sisters, but we had a little scare with my nephew Julian maybe having a cold and so I had to stay in Toronto will Bill. It was sad, but that’s OK. There will be many more for many years to come.

In truth, I was extraordinarily lucky. My transplant process went extremely smoothly. I did not get a single infection or fever the entire time I was in the hospital or since my release, and there were no serious complications. I had the typical and expected mucositis, which are sores in your mouth and on your tongue, and inflamed gums, which are still working their way at receding. I lost a bit of my sense of smell and taste but they are also slowly working on coming back. I lost most of my hair, but not all of it, and it has already started to grow back! The hair I didn’t lose is black, and the hair growing in to replace what fell out is either white or blonde, I can’t quite tell yet ?‍♀️ I didn’t lose my eyebrows, or my eyelashes. I did develop whole body pigmentation change (I got kind of a permanent tan?!) and I also developed hyper pigmentation in some areas where tape was touching my body during the chemo, which will hopefully fade over the next year. Am I cancer free? We don’t know yet, and that’s what’s makes this next window of time so risky and hard emotionally.

Warning, this next paragraph may be TMI for some but is meant to be an informative warning for others having a transplant so they can hopefully avoid the one major issue I’ve had that’s been extraordinarily uncomfortable. Skip ahead if you don’t wanna know! Because I had extremely high dose chemo as part of the myeloablative process, particularly the Busulfan, you are supposed to shower several times a day to remove the sweat from your skin during this time as your sweat is toxic and can cause burns. There was a window of a few days before, including and after day zero where I was so physically exhausted and drugged up to stop my constant vomiting, that I was unable to even get out of bed let alone shower. This resulted in severe skin burns under my arms, and unfortunately also in my groin and on my vaginal area. The skin there initially just turned black, and then started to become inflamed, and it took me a while to realize what was happening, especially ‘down below,’ because you don’t often look down there ?‍♀️ Once we realized what was happening they gave me a steroid cream to help with the inflammation, but as the course of the burns progresses, because the skin begins to slough off and become very itchy (but scratching makes the sloughing worse so you can’t scratch which is hard) leaving massive open wounds underneath. There is really nothing you can do but keep the areas clean and cover the areas in zinc oxide to to help keep the pain and irritation to a minimum until all the dead skin comes off and the wounds heal into new skin. I definitely wish I or someone with me had been more insistent on me showering during those days, even if I needed help, or even wish I had tried to wash under my arms and such in the sink or something because it really is one of the most uncomfortable things I’ve ever experienced, and will take several more weeks to even begin to heal.

Over all though, considering I could have died during this process, or had any number of serious complications, I feel extremely lucky. I actually feel a little guilty. I barely feel like I had a transplant at all, and compared to some of my friends who have cancer, I feel like I got off ‘Scott free’ per se…?

So what happens now? Well, I successfully made it through the first few miles of the forest, but I’m not out of the proverbial woods yet. I am almost at day 30, one month post transplant, and I will continue to need close monitoring for at least another 1-2 months. I take about 25 pills a day, to prevent viral, bacterial and fungal infections, keep my liver protected, reduce the risk of rejection and supplement my low magnesium among others. I return to the hospital twice a week for a half day clinic where they check my blood work, looks for signs of infection or rejection, make sure that the dose of my anti-rejection drugs stays within the window needed to keep my risk of rejection low, and that my counts are still recovering well and show no signs of dropping.

Over the next few weeks one of the things we are watching for (which based on my itchy skin everywhere, my nurse thinks will be happening soon) are signs of acute Graft Versus Host Disease (GVHD) which is when the donor cells have an auto-immune response to my remaining DNA cells and attack them. This acute stage generally pops up in the first 30-60 days post transplant. While GVHD can be severe depending on the area/organ it affects, it typically affects the gut, skin or liver in the immediate window post transplant. With my type of cancer, having some kind of GVHD response is actually desirable, because it triggers another response called ‘graft versus leukemia’ where my donor cells also attack any possible remaining cancer cells that were not killed by the chemotherapy. This reduces the likelihood of relapse, and the effect is particularly strong in CML patients, so I’m definitely hoping for a little bit of GVHD, but am also hoping it’s nothing too crazy!

At the 60 day mark we will do a bone marrow biopsy to take a look at what is happening inside my marrow, and see whether there are any remaining cancer cells. If there are still CML cells detected, I will have to start back on TKI therapy, which, with new bone marrow I will hopefully be able to tolerate this time around (if needed- hopefully I will be cured though, as a transplant is the only curative option, but does have a 30% relapse rate.)

In terms of my immune system, and many other areas of my body, I am basically a ‘baby’. When you go through the myeloablative process to prepare for transplant, all of your marrow is killed. Since your marrow creates the stem cell lines that create your blood and lymphocyte cells, it takes a bit of time for them to come back. While my blood counts circulating peripherally are back in a normal range, I do not have stores of blood in my marrow yet to ‘blast out’ if I suffer from any kind of serious infection that can’t be handled by what is circulating. Additionally, my lymphocytes which are an important part of my immune system will not recover for much longer, somewhere between 3-6 months. I also lost all of my stored immunity like vaccinations, and developed immunity from things like chicken pox and mono. I will not be able to have attenuated vaccines for 6-12 months, or live vaccinations for things like measles, mumps and smallpox for two years, leaving me at extremely high risk for infection from these illnesses, especially living in an area that does not have a vaccination rate enough to provide herd immunity. (VACCINATE YOUR FREAKING KIDS PLEASE!) I have to be careful around all children (since we all know they are kinda Germy), and cannot go near children vaccinated with live vaccines or their parents for a month. An infection measles, chicken pox, or shingles could pose a serious risk to my health, including death. I definitely don’t take that lightly.

In addition to my ‘baby bones,’ I also now have ‘baby guts’ and have to be extremely careful about the food I eat and prepare so that I don’t get food poisoning, which with a low-functioning immune system can also be deadly. I have a very large list of restrictions that I have to follow until at least day 100. Some of these include only eating meat and produce that I have purchased and prepared for myself, ensuring it is cooked to a certain temperature, is washed properly and is always stored at the appropriate temperature. I am not allowed to eat pre-cut fruits and vegetables, or anything from a deli or bakery counter that may have been touched, handled or breathed on by other people. I am extremely limited about what I can eat from restaurants so I am mainly avoiding them for now. I’ve really enjoyed eating lots of salads (well washed) and veggies, since they don’t give you a ton in the hospital, and I also have to eat a ton of protein to help with my recovery so I have been eating a lot more meat and eggs and such than I would typically eat, but that’s OK because it’s what my body needs right now.

In terms of moods and emotions, I have my good moments and bad. I try very hard to be grateful to have had such a successful transplant, to be alive and well, but there are definitely times where coming to terms with the temporary state of my tbody and situation are not as easily overcome with gratitude and positivity. I try very hard to allow myself the permission to feel all those feelings without guilt or shame, but to not let them ruminate for long because I know it’s really not helpful. At the end of the day I always try to remind myself about the many reasons I have to be happy and grateful, and just give myself love for all that I am, and all that I feel.

Mother’s Day in particular was very hard for me, because if my ‘life plan’ had ‘gone to plan,’ this would have been my first mother’s day. Instead I face the potential of never being able to have my own genetic children, and since I have two adopted sisters, this obviously shouldn’t be that big of a deal to me, I mean they are my SISTERS, and I would happily raise a child with all my love no matter who or where it came from. But part of me can’t help but feel like a bit of a failure as a woman and a wife. Before my husband even asked me to be his girlfriend, he asked me if I wanted kids, because he really wanted a kid of his own. That may be something I very well will never get to give him now. I’ve also been told by so many friends how moving and life changing the act of carrying and birthing a child is and I’m disappointed to know I might miss out on that experience. On top of it all, I look like a bald man with a dirt ‘stache from the chemo, with burns under my arms and on my ‘nether regions’ that I’m sure is just oh so sexy. It amazes my that my husband can look at me with his honest eyes and still tell me I am beautiful. Sometimes he truly gives me the strength to go on. While I did trial Lupron to see if we could preserve my ovarian function, the initial signs point to it not being successful (night sweats and hot flashes anyone? ?‍♀️, and we won’t know for sure for a little while yet. While I did know it was a long shot, and had a low chance of being successful, I definitely still held hope in my heart that it would work (and still do!) If it was not successful, I will (or already have) enter premature ovarian failure from the chemotherapy and will essentially be in early menopause and need hormone replacement therapy until I reach the appropriate age for menopause.

Otherwise I am doing really well. I am happy, I am excited for what lies ahead in my second life, and I am filled every day with gratitude for this chance to live this second life, and I really want to make the most of it. I try to find joy in the little moments of beauty that the world shares with us every day that we so often overlook. What do I have planned for all my time at the condo? Well I started writing a novel last year that I really want to finish, I am learning how to produce my own music on garage band, I am hoping to learn guitar, I am going to continue with my blogging, I am going to help my husband a little bit with his business, and of course, take naps 🙂

I hope today finds you as well as me! Lots of love

C