I’ve talked a lot about the light at the end of the tunnel; how far away it seems sometimes. Like a finish line just out of reach, or a constantly moving target, the end never seems to truly be in sight. This time it feels the light turned out to be a freight train.
When I last touched base around my birthday, I had been struggling with a recurrent Cytomegalovirus (CMV) Infection that has been pretty much a non-stop pain since my transplant. CMV is similar to chickenpox in the sense that once you’re infected and the initial infection period is over the virus remains in your body, but is repressed by your immune system. When someone’s immune system is too weak, the virus can become active again and if left untreated can result in what they call CMV Disease, which is when the virus begins to overwhelm your organs and can ultimately result in organ failure. I’ve known since prior to my transplant that the three biggest mortality risks following my transplant were Graft Vs Host, Relapse and CMV or EBV infections. I wasn’t unprepared for this… but to have struggled with GVHD and CMV so much has made it a bit harder to overcome that nagging fear in the back of my mind that I won’t end up getting as much time as I hope for.
Having a CMV negative donor but being CMV Positive (as I was) during transplant greatly increases your risk of having reactivations of the virus. As of today I’m on my 11th reactivation.
Since the virus has already mutated once and no longer responds to the usual oral or IV drugs, I had a Picc line placed after my birthday (I had my Hickman removed last year), and I started receiving Foscarnet using an Auto Pump that I wore 24/7 that delivers the drug at set times. Foscarnet is an extremely harsh drug and it was only a few days before I was extremely sick.
Over the next 6 weeks I spent almost 5 of them in the hospital bouncing from home and back to the transplant floor as they tried to manage how sick I was. The fact that we had been trying to cut back my prednisone, and had doubled the dose of Jakavi (an immunosuppressant) around the same time was making it really complicated for my team to try and figure out exactly what was making me sick. Was it one thing, or a combination of multiple? I couldn’t eat, I could hardly keep down water, I was so tired my body felt like it was going to tap out any minute. It was the most scared I’ve been since my transplant. Your messages of love and encouragement literally kept me hanging on through some pretty dark times.
In the middle of all of this- I tested positive for C.Diff, found out I have to have both my hips replaced, and have 8 of my teeth removed. The high dose steroids I’d been on since last year had finally worn down my bones enough to cause necrosis in both hips, and a subchondral fracture in one. My shoulders also had necrosis on both sides but not significant enough to require replacement right now (Small wins!). The GVHD in my mouth affected my salivary glands to the point where my mouth became too dry for my teeth to stay healthy so they started to fall apart. I can’t have my hips replaced, or my teeth pulled until I’m on a stable and lower dose of Prednisone, have no active infections, am not on any antibiotics and have no active GVHD (so basically never haha).
Foscarnet is extremely hard on your kidneys and I suffered an acute kidney injury as a result of the first round in June and early July, which meant we had to stop the Foscarnet as soon as my CMV came back ‘undetectable’ which isn’t the same as a negative. Typically we would want to see two negative tests, one week apart before stopping. But I was so sick and my kidneys were so shot we had to stop as soon as we got one undetectable. The result? My CMV came back not even 5 days later, and it was angry. Like really angry. The viral load had gone from undetectable to in the thousands in less than a week. So we were now walking a bit of a fine line. I couldn’t tolerate the full dose of Foscarnet again, but lowering the dose leaves the risk of the virus mutating again and me ending up with entirely treatment resistant CMV which is terrifying. So I had to go back on the auto pump, we adjusted the dose down a bit and I had been able to manage pretty well at home this time round for the most part.
I guess that leads us to today. At clinic my kidneys were in acute kidney injury territory once more, so we had no choice but to stop the Foscarnet again even though we haven’t had two negatives. It came back undetectable Friday and that’s about where we were at last time. The plan is to give my kidneys a rest for a couple days, I’m going back Wednesday and Friday for fluid and check ins, and if the CMV reactivates again (which we imagine it will) we will start the Foscarnet again when it’s safe. I’m scared. I’ll admit it. It feels like this virus is just relentless and even though I’m nowhere near ready to back down, I worry that it’s persistent sucker punches will wear my body down before my spirit.
Right now we are waiting for this reactivation of CMV to peace out, and then we are going to try and move forward with the removal of my teeth, and then if things are still looking stable, we are going to start with my hip replacements separately, Left hip first, then Right after the left is recovered. I probably have another 6-10 months of recovery ahead of me which is hella frustrating considering I’m a year and three months post transplant already.
But the good news is, the pain in my hip is pretty low because of the type of fracture it is. Some days are great, and some days are not so much depending on where it’s fitting that day. The cartilage is preserved so there is still cushion, just limited movement in certain ways. I’m mostly able ambulate easily with a bit of a limp and I use a walker for safety, as the femoral head could snap while I wait out the surgery and result in a fall. On some of the bad days I use a wheelchair and just give everything a rest and my arms a work out instead. I’m extremely happy that when we renovated our house we made it entirely wheelchair accessible.
I guess everything I just said sounds kind of crappy, and maybe it is. But I think I’ve come to the realization that after all this time, very few things phase me anymore. The only way I’ve found to deal with the never ending surprises, changes and uncertainty is just radical acceptance of what is, right now. I’m becoming aware of the slowly unravelling parts of myself that clung so strongly to the need to be in control, to know what was next. As each new challenge presents itself I may falter for a moment or two, before a swell of hope and determination continues to move me forward one step at a time, and I start at what feels like the beginning for the hundredth time- only reset, renewed, ready for another battle. I’ve discovered this contentment, this peace in simply being. There is a lot of fear about cancer. Before, during, after. So many what if’s. At times I’ve felt it might swallow me whole. But not anymore. You know why? Because I don’t want to spend the rest of my hard-earned life letting the fear of ‘what if,’ rob me of right now.
I started off this new chapter of liberation by joining my best friend Emily at a fun photo shoot for a clothing company called Canoe and Lake (their camp pants are to die for FYI). It was way outside of my comfort zone because I still am not hugely comfortable in my current skin, but I tried to just let go of all those ‘Becky’ fears and have a fun time. The one thing I love about Canoe and Lake is their slogan: ‘She paddled her own canoe and lived happily ever after’. The brand champions women of all ages and shapes and recognizes the challenges and struggles so many women have been through. I guess in a way I can sum up what cancer has taught me by saying it’s taught me to paddle my own canoe.
**I just wanted to say thanks again to everyone for the kind messages, texts, calls, thoughts, prayers over the last couple of months. Your ongoing love and support is what helps me keep moving forward and It truly means so much to me to be so cared for and to be part of such an incredibly strong community.