It’s been a while since I wrote a blog, but a lot of stuff has happened and I’ve truly been in the hardest, darkest stretch of recovery. I just couldn’t do it. This is a long one, but it’s been a long three months and my hands wouldn’t agree with me so it’s taken many slow attempts. Sorry!
When I last updated I was still in the hospital at Princess Margaret dealing with a double mutated treatment resistant form of cytomegalovirus (CMV). I had just had most of my teeth removed, but my graft vs host disease was finally under control. I was able to stop steroids after a year of hell, and we were waiting for my kidneys to recover enough to try cidofovir for the CMV.
A couple of days before I was released we tried the Cidofovir- which is administered by IV and is only delivered once a week. It’s so toxic to your kidneys you have to take a special drug that tries to shield your kidneys first. After two days everything looked OK, so on September 14th after 6 more weeks in the hospital I was finally able to come home.
At my clinic appointment a couple days later everything did NOT look ok. The cidofovir had caused my kidneys to nearly fail (they were operating at 16%) and we had to decide whether to start dialysis or see if they would bounce back. We decided to wait a couple days and see what happened, so I was sent home with home hydration (IV fluids administered at home) and we crossed our fingers. A couple days later they had gone up to 20% so we hoped that if we kept waiting they would slowly recover. We continued the home hydration and I tried to settle back into being at home. We knew my kidneys couldn’t handle anymore nephrotoxic drugs but I still had a CMV infection, so my amazing team of doctors reached out to a drug company in the states that were running a trial on a new drug designed to combat CMV in a totally different way. After much begging, the company granted us ‘compassionate use’ of the drug since I was essentially out of options, and they flew up a months supply for me to try. We started it right away.
Because I had basically spent 90% of the summer in the hospital I had become extremely weak and deconditioned and struggled a lot with most activity. I could no longer climb stairs (not even one stair!) and I couldn’t stand up on my own from furniture that was too low. I had to carry a special riser cushion if I was going to other peoples houses, I had to get raised toilet seats with arms and special bars on my bed so I could pull myself up. I could only walk with the assistance of a walker that we had to get a special seat for because I couldn’t stand for too long without getting exhausted. Often my husband would have to carry me up stairs or lift me up off the couch. It was embarrassing and frustrating.
At clinic a week after I got out, while getting my blood drawn I experienced what we think was either a small seizure or a complete bottom out of my blood pressure. I blacked out and a few minutes later I woke up on a stretcher with a million people looking at me. I had wet my pants and was told I was making awkward snoring, gasping sounds. I felt drunk and disoriented and had no idea what was happening for almost an hour afterwards. It was terrifying. I was hospitalized over night while they ran some tests to make sure something more sinister wasn’t going on and the next day they let me go back home while I awaited an appointment with a neurologist.
On September 27th, everything changed in a split second. The side of our house is only a couple of steps away from our garage which is Bill’s Man cave, and so without my walker I stepped outside to pop my head in and see him. My left leg gave out, I reached for the wall of the garage opposite me to stop my fall but landed directly on my right knee. It literally exploded right across my knee cap from end to end. The wound was so deep, fat and tissue was coming out. I’ve never seen anything like it. (There’s pictures at the bottom, they’re graphic and gross, you’ve been warned lol. I screamed for Bill to call 911 and they took me to the closest hospital.
Things kind of went a little sideways from here but I try to give everyone the benefit of the doubt so I wont elaborate too much but…They did an X-ray of my leg to make sure nothing was broken and then took me to be put under so they could clean and close the wound. After being put under, they woke me up about half an hour later to tell me the wound seemed pretty deep when they were cleaning it so they were waiting for a surgeon to consult on the next move. A surgeon apparently looked at my x-rays and talked to the doctor over the phone and they decided to just close it up, so they put me back under and closed it.
When I woke up they used a lift to get me into a wheelchair, put a full leg splint on my leg and told me I could call my husband. They asked if I wanted to stay but I was so out of it from all the pain meds and stuff that without really thinking I said I would just go home. I had clinic at PMH the next day too and I didn’t want to miss it since we needed to check and see how my kidneys were doing and if the trial drug was working.
Bill showed up to get me and had to dead lift me from the wheelchair into the back seat of the Jeep lengthwise since I couldn’t bend my leg. When we got home we began to realize how impossible the situation was. I essentially couldn’t move so Bill would dead lift me from the wheelchair to bed/the commode and back. All night when I had to go to the bathroom I would have to yell for him to come and lift me onto the commode. I felt so awful about it.
The next day he woke me up and told me his dad had passed away in the night. We cried.
I was glad I got home in time to have some more visits with Bill’s dad before he passed away, but it was extremely painful to watch the people I love suffer a loss so great. I felt truly helpless. He loaded me back into the back seat and my dad took me to clinic in Toronto at PMH so Bill could go and be with his family.
The good news was- the trial drug was working. My kidneys were still struggling but seemed to be slowly improving and my CMV count was finally going down. My nurse didn’t want to take the dressing off my wound so soon, but since I wasn’t sure how to care for it she arranged for a wound-care visit for my next visit in a couple of days. But I didn’t make it that long.
Two days later my leg had grown massive in size and could no longer be considered swelling lol. I had developed a pain that seemed to increase by the hour. By mid afternoon I was in so much pain I was screaming and crying and my husband called 911 again. I screamed the whole way back to the hospital and by the time we arrived I’d lost all of the feeling from my ankle down. They suspected an infection or internal bleeding so I waited for a CT and they gave me pain medication and cut out all my stitches to try draining the wound. The CT showed I had a massive hematoma in my lower leg likely caused by the combination of blood thinners and vascular injury inside the wound that was bleeding into my leg. I needed surgery right away as they feared it was potentially compartment syndrome. I was completely out of my mind on pain medication while the surgeon explained the possible procedures that might occur once they put me under, including a complete fasciotomy depending on how things looked once they got in there. He solemnly told me if there was too much necrotic tissue and they didn’t remove it I could lose the leg. I told him I didn’t really want any of those things to happen please, and he said he would do his best. I signed the consent forms and closed my eyes and hoped for the best as they put me back under.
When I woke up I could see two feet and I wiggled my toes as I gave a huge sigh of relief. They had been able to clean and debride the wound through the original laceration, ensure there was no more bleeding and remove a portion of the hematoma before stitching me back up. The pain was immense but pain medication helped. Unfortunately it also made me insanely sick and I spent the next ten days not moving except to throw up Literally non stop. I physically could not move without a mechanical lift or multiple people’s assistance. This was the clincher. I had already been so weak prior to this that ten more days of not moving seemed to render my body completely useless- and not helping in the least, was the trial drug I was taking for the CMV which had gone from causing mild and annoying numbness in my fingers and toes, to slowly taking over almost my entire hands and feet with a strange numbness filled in with painful pins and needles.
It was apparent I would need rehab, as the weakness in my left leg due to my broken hip and the full leg splint on the right made it impossible to stand up. Once I was fully recovered from the surgery they moved me over the rehab and I slowly started trying to become a human again. Since my whole body was weak instead of just focusing on my leg, we had to start trying to gain strength back in my whole body. I couldn’t roll myself over in bed, I couldn’t sit up without assistance. Because of my limited mobility I was hooked up to a catheter for about two and a half weeks until I gained the strength to slide board to a commode or roll over for the bed pan. I went 21 days without having a real shower, and had to be cleaned, and then eventually clean myself in bed from a basin.
We started work on arm strength ( I seriously hate the arm bike) and we used parallel bars with two physiotherapists to help lift me on to my feet so I could start trying to walk again a couple steps at a time. It was terrifying. I cried the first time I made it to my feet. I felt like a child experiencing the feeling of being on their feet for the first time, searching for the ground with my toes, experiencing gravity and thinking so hard with each step to ensure my leg and foot move where my mind want them to. If I let myself get distracted for even a moment my knees would crumple underneath me and I’d nearly collapse. If I hadn’t been wearing a splint on the right leg to stabilize me I would have fallen a million times. Every movement required so much thought, so much concentration. Nothing felt automatic anymore.
It was around this point in rehab that I had a complete meltdown. I had found the first couple weeks of rehab so physically and mentally challenging that the thought of recovering just to have my hips replaced and having to recover all over again- twice, was like this weight I could not get off my chest. I was so exhausted and emotionally drained from the last year and a half I really didn’t think I had enough gas in my tank to go the distance. I had been sick since June, barely able to eat and constantly throwing up and no one seemed to have an explanation or solution. I had hardly any teeth or saliva which completely changed my appetite and ability to eat most foods. I’d lost 50 pounds in just under four months (which don’t get me wrong, is great since I gained like 100 from the steroids treatment for GVHD), but I could barely walk, I still couldn’t stand up without two people’s help and I had a CMV infection that literally would not die. I felt deeply ashamed to watch so many elderly people in rehab doing better than me. How had I gotten here? It filled me with despair.
I feared I would never have my active life back, never be able to travel, that my husband would have to push me in a wheelchair or carry a walker around, and would have to help care for me forever. I felt like such an excessive burden on everyone and was just so sick of being sick. There were a few times I even wondered if I had made the right decision in having a transplant at all, and felt like things would be better for everyone if they just didn’t have to worry about me anymore. I was in a pretty dark place, but a well timed message reminded me of the power of my vibration, a good therapist, and the love and encouragement of my family and friends helped me keep taking it one hour at a time.
We kept working on walking and arm strength, and as we did my hands and feet continued to deteriorate. The pins and needle seemed to turn into a strange numbness with pronounced weakness. At a check up with PMH a couple weeks into rehab it was determined that the muscle in my hands had almost completely disappeared. I could barely feel my feet so I had to wear shoes all the time to balance and make sure I didn’t injure them. I had trouble lifting them up enough or sensing where they were. I began having trouble gripping things like my walker and holding things like my phone, pens and cutlery. My hands would get terrible cramps so painful it felt like I was 100 years old with hella bad arthritis. They also were SO COLD, they felt like the hands and feet of a corpse attached to my body and the cold was so intense it made the rest of my body frigid. I ordered a hand warmer on amazon I used all the time just to try and ease the freezing feeling. I couldn’t lift anything without two hands, and even then my hands often felt like rogue actors, not fully connecting with my brain and not listening to what I wanted them to do. It was like in the span of a month I went from a normal person to a baby with no muscle, motor skills or strength. It was terrifying. The doctors were stumped. It was listed as a rare side effect of the trial drug, so we just hoped it would work quickly enough with the CMV so I wouldn’t have to be on it for too long and that the symptoms would reverse when we stopped it. We started doing hand exercises in rehab, really fun stuff like opening and clipping clothespins and using special hand tools to try and gain strength and then as the strength started to return, re-learning how to hand write, type, do up zippers and buttons, use scissors, open jars etc.
After a month on the trial drug for my CMV, my CMV Test finally came back negative (YEAH BABY!!), so we stopped the drug immediately since we were operating on the assumption that it was causing the neuropathy and weakness in my hands and feet and we didn’t want it to get any worse if the CMV was gone. I continued with rehab and got ready to transfer to home with home care and home physio.
Slowly I got better and better and was able to get out of my wheelchair with only one person helping, and was able to graduate from the parallel bars to a walker. I still couldn’t stand without assistance, so In preparation to go home I had to practice using something they call a transfer pole which is basically a giant stripper pole with handles to lift myself out of bed and over onto the commode so I could go to the bathroom unassisted if needed. (My husband is disappointed that it is not the type of pole he was hoping for haha).
I had been wearing a full leg splint since my surgery and had to for all weight bearing, but about part way through rehab they let me start taking it off at night. I would sleep with the electronic bed’s leg setting in the highest position to try and keep some bend in my knees and I discovered it also helped minimize the pins and needles in my feet a bit. The day before my release the surgeon let me take the splint of and try to walk without it. When I was able to and it felt OK, I then went to physio where I worked on quickly trying to get used to having that leg back, how to bend it, and trying to stand up etc before I went home. I cried all over again when I was finally able to stand up on my own for the first time with no help.
I’ve been home for a couple weeks now and it’s been a learning curve to adjust. For the first while I had a mix of public and private home care around for part of the day to help me transfer from bed to wheelchair, make food, shower etc as walking with the walker was something I still wasn’t crazy confident with yet and my family forbade me from walking/doing anything stupid when I was home alone since they were so afraid of me falling again. It was very difficult to do a lot of things and there were many times I grew frustrated and impatient with how slow my progress seemed but I definitely have seen steady progress. I guess slow and steady wins the race! I only have help a few times a week now and today is the first day I’ve been home alone for the whole day. I am able to get out of bed on my own, I am able to walk around with the walker and stand in the kitchen at the counter for longer each day- long enough to finally help with some cooking and cleaning which makes me feel a bit less useless. I still am very unsteady on my legs and move extremely slowly, but I’m moving, I’ve ditched the wheelchair completely and use just the walker and am committed to getting some semblance of my old physical abilities back.
Last week at clinic everything looked great still, counts were good, GVHD seems under control and leg is healing up nicely. My doctor joked about what a ride the last year has been and I thanked him for sticking it out with me. He laughed and said he just couldn’t believe how many things went wrong. Every possible complication or rare side effect that can happen, just all happened to me. But he was very glad I hung on, and hoped the light at the end of the tunnel (that I think I just started being able to see) will finally be here soon.
I had a dental consult last week and we made plans to start figuring out some tooth replacement options in the new year and finally had my appointment with the neurologist who very kindly agreed not to suspend my driver’s license (not that I can really drive anyways) until we do a few more tests to determine whether what happened in September was a seizure or not. I’ve been off of the CMV trial drug for almost a month now, and although some of the strength in my hands has gotten better from exercise, the numbness and pins/needles has stayed which is disappointing. He did some physical tests on my hands and legs with vibration and sensation, and we discovered that I strangely have no reflexes. Like not a single one anywhere! He ordered up some more testing and hopefully they can provide us with some answers in the new year. Next week I have a surgical consult for my hip replacements as well- hoping to get them done early next year so I can at least be back walking by summer.
It is so wonderful to be home, to be with my husband again, to cuddle my kitties and eat what/when I want. While it’s been an extremely challenging year in terms of recovery and I had many dark and scary moments, I am always set straight and inspired by the incredible people who I’ve met along this journey that passed away, while I still get to be here. I have lost many friends to cancer this year, far too many. In the face of such unfair loss for that so many experience, it is truly an honour to continue to live. While surviving my transplant and it’s complications involves the loss and grief of many aspects of my life, I still get to have a life. I still get to cuddle my husband, to eat bacon, to watch birds and see snow. At almost two years out from transplant, I had hoped my future would seem more clear and I’d be back to a more normal life. Inspired, working on projects, performing.
While I may not be sure of what my future will hold or how the rest of my recovery will go, I will continue to carry endless gratitude for the chance to have this hour; this day. To still be here at all, with all my limbs, walking, breathing, laughing. I have been humbled many times this past year by circumstances that reminded me how truly lucky I am for every little tiny thing in my life that I’ve ever taken for granted. So many things you just don’t see, don’t think of because they’re automatic, easy, safe…. there are so many things to be grateful for. I hope I can continue to carry those reminders with me into next year and beyond and to share those messages of love, happiness and gratitude with those around me in whatever future lies ahead.