It’s been a while since I updated last, because sometimes I really struggle with what to say. Sometimes this journey is such a roller coaster, and I’m not even sure if by the time I post an update it will even be accurate anymore! Sometimes I’m afraid to post because I know my post isn’t going to be positive, and I don’t want to let anyone down, so I simply stay silent, but I’m not really sure if that’s the best choice.
After my last update, things started drifting downhill a bit. My counts began dropping, and my platelets dropped so significantly in two days, we couldn’t figure out what was happening. I lost my appetite, kept getting random low grade fevers, got really severe skin itching, extreme mouth dryness and some pretty persistent nausea that was making it really hard to even think about food or function like a normal person. My skin seemed to be breaking out into random reactions that were completely different on every area of my body. In some areas, my skin turned black like the Busulfan rash, and in others they just turned dark and almost scabby. On my legs I got a weird red rash that looked like folliculitis, and on my trunk my skin turned dark and crepe-paper like, with visible veins and scaling. All over my body was so itchy it felt like invisible chicken pox.
Initially because of the symptoms and the dropping counts they believed I had some kind of infection that hadn’t yet been picked up by any of the tests, or that I was beginning to get GVHD. So they ran a bunch of extra infection panels, and we waited and kept monitoring into the next week.
Last Tuesday was my six week date of having my Hickman line inserted, so after doing my blood work the Nurse was removing my stitches, and I had a near blackout experience. I got extremely hot and sweaty, everything started to go black, and my nurse had to lay me back in the chair and get me some water. I was able to avoid passing out, but it reminded me a lot of the blackout I had in the hospital and scared the crap out of me. It was super strange.
When I met with my transplant nurse after this, we discussed that I was starting to experience symptoms that had them leaning towards GVHD, like some gut issues and elevated liver panels. They were still a bit puzzled as to why my skin never showed the typical raised hive-like GVHD rash, but since they hadn’t yet picked up an infection yet, the working diagnosis was GVHD of Skin, Liver and Guts when I left clinic. They gave me prescriptions for steroids to get it under control, calcium and Vitamin D to protect my bones against the steroids as well as a once weekly pill you take for a month to help prevent bone density loss from the steroids.
This is when things got weird (and maybe a little magical?) Because of trying to manage the randomness and shortage of available care-takers post transplant, instead of being able to pick up my prescriptions right away (like I was supposed to) I had to leave with my husband and go to Pickering to meet my friend, so she could take me with her to the studio for the day, and then bring me back to Toronto later on. While we were at the studio, my transplant nurse called to tell me they had picked up a CMV infection in my blood from my labs from earlier in the day that they had just gotten back, and that I would need to also take a new prescription for that, to try and keep that virus in check.
On Wednesday I was supposed to pick up all my new prescriptions first thing in the am, but my friend had to leave for work early, and then again because of trying to manage my care takers schedules I was alone until 1:30 when the next person arrived. Because of my weird episode the day before I didn’t feel safe heading over the hospital alone (and I’m super glad I didn’t) because when she arrived and we uber’d over, I damn near blacked out in the middle of talking to the pharmacist. Exact same thing as the day before. Super hot, suddenly excessively sweaty, everything starts getting dark and fuzzy. The pharmacist recognized what was happening and told me to sit down right away, brought me some water and again, we avoided a full on blackout. The pharmacist told me because I had picked up my prescription for the steroids so late in the day, I wouldn’t be able to take them that day or they would keep me up all night- so second day not taking the prescription for the GVHD. She did tell me to start the Valgancyclovir to treat the CMV that evening.
We called my transplant nurse when we got back to the condo, and she told me to go to the ER to get my heart checked out and rule out anything else that they could have missed. We both knew it would likely be a waste of my time, but agreed better safe than sorry. It took almost 6 hours to get checked out and released, with little to no answers. My ECG showed some possible changes since my transplant but nothing they were panicked by. By this time I had noticed that most of my GI symptoms had suddenly started to disappear, which I thought was strange.
On Thursday Right before clinic I took my first dose of the steroids, so they didn’t even have time to do anything yet- and when I got there my transplant nurse sat down with me, and told me she was baffled. My liver stats had started to resolve. My counts had stabilized and started to come back up, and since my GI symptoms had begun to resolve on their own without any intervention, she doubted that I did in fact have GVHD. If I had started taking the steroids earlier (like I was supposed to) we likely wouldn’t have seen that things corrected on their own, and would have chalked it up to the steroids. I was unfortunately still left with a lot of symptoms that couldn’t be explained, and that made me a bit uncomfortable, but we debated whether some could be CMV related. In addition to the itching which didn’t present like skin GVHD, I’d been having these weird hot flush feelings, that coincided with an extreme reddening of my face and ears, and a weird red splotchy rash on my chest and face. It would pop up instantly, and then resolve within minutes. My nurse had witness it several times during clinics, and we were having a hard time identifying what it was. She conferred with another nurse and brought in a doctor to inspect my skin, both of whom got to witness one of these flushing episodes, and were also very puzzled. We debated the possibility of hormones, some kind of side effect from the Lupron injections I had done, or some kind of endocrine issue as a potential cause and decided that if things didn’t resolve in the next week or two she would send me to an endocrinologist.
We decided to not move forward with the steroids for the GVHD and feel things out, but I left and headed into the weekend kind of feeling more confused and overwhelmed than ever. I felt like my body had no idea what it was doing, and neither did anyone else and it gave me a terrible sense of dread and fear that was gnawing at me.
While I found a lot of support in groups online prior to my transplant, I distanced myself after transplant because I often found the posts from other people filled me with fear. So many people posting about their partners or spouses dying at day 40, 50, 200, etc… from complications after the transplant made me feel terrified that I would be like that. That I would have fought so hard, and made it this far, just to die from something like a heart arrhythmia or infection. Suddenly I was back in the fear zone and it felt like I couldn’t get out.
On top of being in the fear zone- trying to manage my own personal care, as well as the schedule of my care-takers has been far more stressful than I ever anticipated. Trying to stay on top of all of my medications, tracking symptoms, eating at the right times so I can take the right pills, ensuring all the sheets and laundry and surfaces are clean, and resting as much as my body needs to sometimes feels like it’s a full time job. Initially I had planned on mostly having my mom and husband be my care-taker post transplant but due to my mom’s emergency surgery while I was in the hospital, and her already weakened immune system causing her to get sick multiple times since then, it just hasn’t been the reality.
My husband has desperately tried to juggle continuing to run his business while still spending 4.5 days a week with me in the city, and then I am often co-ordinating with 3 separate people to fill in the rest of the days. This makes me feel like a massive burden. Not just that, but as much as I love seeing people, I often find I am having the same conversation about how I’m doing, and how things are going, three times a week with different people and sometimes that just makes me really emotional and stressed out. Sometimes all I want to do when my care-takers get here is hide so that I don’t have to go over it all again with someone else. I am constantly afraid of people resenting me, most especially my husband (who obviously is always quick to assure me that would never happen) but I can’t help but feel that this enormous stress everyone is having to deal with is all my fault. That feeling has kind of transferred over to my care team as well, where I often feel like a burden for having all these strange symptoms and having to constantly call the nursing line to ask about stuff, but I know that it’s important to be cautious and share everything with them just in case, it’s just another area where I always feel like a bother.
It’s also not easy to almost never be alone. I often feel like I need to entertain the people who are caring for me, sit with them, chat, make sure they are fed if I don’t feel like eating etc. It’s hard for me to turn that part of myself off. What confuses me the most is that, even though I’m almost never alone, I feel the most alone I’ve ever felt. I know that when I’m explaining to people how I’m doing, and what I’m going through that although they can try to understand and be empathetic they truly do not understand. Oftentimes they will tell me how strong I am, and that I need to try not to worry, try to stay positive or meditate, like that will somehow immediately fix all of the complicated emotions and extreme stress that this situation involves; and then I get angry and bitter, even though I know I should just be appreciating their care and concern. It just feels extremely hard to relate to people these days.
I am grateful to be alive, and I am trying really hard to gain a stronger foothold on my previous positive attitude. But I’ve started to wonder if I am struggling a bit with situational depression which is making it harder for me to get back in that headspace. It’s not that I’m complaining (I mean I kind of am, I just need to get it out sometimes), but life after transplant is a HUGE adjustment. It’s not just back to life as usual. It’s easy for people to sit there and say ‘focus on the positives’ or ‘be grateful for what you still have and can do’- but I really want you to imagine, how hard it would be if suddenly every aspect of your life changed, and you had to emotionally and physically cope with that, with limited psychological support or a feeling of true understanding or relation from others.
I am essentially confined to a 400 square foot condo, with another human (often a different one, every day) for the majority of my day. I have extreme restrictions on what I can eat if wasn’t prepared by me. I can’t just go out to a restaurant with my husband or friends. I have to plan my shopping trips during off-busy times and I have to avoid a large number of items in the grocery store that I would normally eat. I have to carefully prepare and cook my food to prevent food poisoning or infection, which takes way more thought than anyone would normally put into preparing and planning meals. I have to plan my meals and meal times to coordinate with the mass amounts of pills I take, and I have to drink 3 litres of water a day, to flush it all through, which means I spend a lot of time in the bathroom. I can’t eat soft serve, I can’t go to food trucks, I can’t have slushies or ice-caps or milkshakes. I basically can’t eat anything delicious or convenient.
I can’t go out in the sun without long sleeves sunscreen and a hat at all times. I’m not allowed to swim, to be near bonfires, to garden, to go to the movies, concerts, sporting events or crowded places. I’m not allowed to drink or smoke cannabis. I’ve missed every family birthday and dinner since my transplant. I’ve had to turn down multiple invites from friends for outings. I have to juggle having completely unpredictable energy levels that mean sometimes I immediately need a nap, no matter what I had planned. I often feel like everyone around me is continuing on with their lives, and their life plans, and I’m just still stuck in this limbo for an uncertain period of time, wondering.. what’s next, and when will my real ‘second life’ truly begin?
My body is constantly throwing out random side effects that can’t be controlled that I simply have to tolerate and ‘wait out’. I’m itchy all over the place, in some places I have bruising and open sores from scratching so much. My body is still sloughing off dead skin in large amounts of places, including my private areas which means physical intimacy is still an absolute no, which also contributes to my fear of resentment from my husband. I still have no hair and struggle to reconcile with the image of myself in the mirror and feel disconnected from reality when my husband kisses me or tells me I’m beautiful, like he’s talking to some stranger that I no longer am and cannot see anymore. I’ve lost weight from the no appetite, I constantly have a bone dry ‘Sahara desert’ in my mouth that makes it hard to chew and break down food or even be interested in food at all. I spend almost all of the time I’m not in the condo at the hospital and I am constantly afraid before each visit that it will be bad news. I am always afraid of the ‘other shoe’ dropping, I am terrified of rejection, or that the cancer wasn’t killed and I still have to wait 25 more days to know for sure. I am always worrying that even if we did kill it all, will it come back? Will I get GVHD? Will it be controllable? I am always worrying about getting infections or catching an illness that my body can’t fight. What if I get measles before I can get vaccinated? It’s a lot of worry and anxiety that is much harder to just ‘set aside’ or ‘overcome’ than you would think. Sometimes I feel like I will never feel truly secure or safe again, and that is an unsettling feeling.
I know that sounded like a lot of complaining.. but that’s the reality of my life right now. It’s a lot of things to think about, and stay on top of to remain vigilant and safe. That’s my every day. So if that was your every day, would you always find the energy to ‘stay positive’ or to ‘only see the good’ or to ‘tell yourself a better story?’. It just doesn’t always feel that simple. Even if you think it should be.
I obviously know there are so many people that have it far worse than me. There are people all over the world struggling with challenges far greater than mine. I know that at the end of the day I AM LUCKY AS F***. But that doesn’t always make it easy to maintain my perspective, or to handle my own challenges. I return to a place of gratitude often, of recognizing how truly lucky I am, to try and put things into perspective… but some days it just feels like my own challenges are more than I can carry, and I just have to hope the weight will feel easier tomorrow, and grow lighter with each day.
Today in clinic things were a bit more positive. We did identify a second infection (EBV) in my blood, but it hasn’t reached a level that requires treatment with Rituximab yet. They will be monitoring it to see if my body can get a handle on it, and if the level reaches too high they will start treatment for that infection as well. Both CMV and EBV are commonly seen infections post transplant and my transplant nurse and I had a long talk about how even though it feels like nothing is going right and I’m not just ‘getting better’, that things are going well. That it’s normal to feel sad, and overwhelmed and frustrated with the recovery process. She had to remind me that at the end of the day, I had a transplant 39 days ago. It’s a serious procedure and If I had had an organ transplant I would still be in the hospital. She reminded me that I had myeloablative chemo, some of the strongest chemo they can deliver and that the effects on my body would be far reaching, and slow to recover. That I had to give my body the time it needs, and that I can give myself permission to feel all the things I’m feeling, but that everything so far, is going ‘well’ in the grand scheme of things. She referred me back to the psycho-social oncology department with an emergency request since I had been having trouble getting an appointment with my usual doctor post transplant and I had indicated that I felt it was time I spoke to someone about all these feelings I’m having, because I just can’t keep dealing with them on my own anymore. I’m hoping that helps a bit.
Now that I feel like I’ve Debbie-downer’d everyone, I should probably wrap it up with a positive note. At the end of the day, I’m doing as good as I think can be expected. I’m still fighting, I’m still trying to stay strong, I’m still keeping my proverbial sh** together. I smile at every message or card I have received, even if I haven’t had the chance to response to them all yet. I still wake up every day and thank the universe for one more day. I am still grateful to be alive and to have had the chance to live a second life, and I am always trying to hang on to the hope I have for how much use I want to get out of this life as soon as my restrictions and energy allow. As always I appreciate everyone’s support and kind words (even if sometimes I get upset because I’m a bit of an emotional person these days) and I appreciate that you’ve all been a part of this journey with me. It really has meant a lot to have these blogs and know that I have somewhere to let all those thoughts out and have them received without judgement and with love. So thank you. I love you all.