Day +498- One in a million

In my last blog I talked a lot about this recurrent Cytomegalovirus (CMV) infection that I’ve been having endless problems with. At the end of July I was hospitalized to manage the complications that the drug Foscarnet, which we were using to treat the CMV had been causing. It’s very hard on your kidneys and it causes crazy electrolyte imbalances and can affect your blood counts, so I’ve been in the hospital for a month now on continuous fluid, and get daily top ups of whatever electrolytes/blood the Foscarnet has messed up from the day before.

About three weeks ago we sent a sample of my CMV to the national lab in Winnipeg and asked for it to be sequenced to determine if I was truly resistant to the previous family of drugs we had tried, just in case our assumptions were wrong and that could give us another option. The test didn’t end up containing a viral load large enough for them to properly sequence, so we had to send another last week.

The results came back yesterday and unfortunately they detected not one, but two mutations- I am resistant to the first family of drugs we tried (gancyclovir) and now, since we have had to stop/start/dose change the Foscarnet so many times I have developed a resistance against it as well. The odds of this happening are extremely slim- so much so that the nurses are always joking about how I’m the ‘one in a million patient’… If only the one in a million could help me win the lottery lol. 

This unfortunately leaves me with only one treatment option- a drug called Cidofovir. The team has been working in overdrive since yesterday to get government approval for the Cidofovir and to track some down as its not used very frequently. We are also going to try a product called Cytogam which is basically an immunoglobulin infusion from people who have CMV antibodies in the hopes that their antibodies will help fight my infection. 

Should the Cidofovir not work, or I develop a resistance against it as well, we are out of options. There is a clinical trial in the states where they are reprogramming T-Cells to target specific forms of drug resistant CMV that may be an option for me, but I’m trying really hard not to think that far ahead or panic yet…

Ok that’s a lie, I’m kind of panicking. It makes me extremely nervous to know we are on the last option already. It’s scary to think that I may have beaten cancer, just to be beaten myself by some silly virus. I know my team is working their asses off to try and make sure that doesn’t happen but sometimes I worry. 

Last Friday since I was an inpatient and was bored we started trying to hammer off the other things on my list that needed to get done, so I had five and a half teeth removed as well as my bridge. Because of the teeth I was already missing I essentially only have my front teeth left to chew with which is extremely awkward and probably a lot more funny to watch than it is for me to experience lol. I also had my cataract assessment and we decided to wait on removal surgery for now. 

We have managed to finally get all my GVHD under control, a liver biopsy determined that I only have mild fibrosis fro the GVHD so far and now that it’s under control things should start looking better…and I also was finally able to wean of prednisone fully, so two major steps on the road to recovery for me! (small wins, gotta celebrate em!)

I am still waiting to have my Hip replacement done, we just really want to see this infection gone before we go there. I’m not sure how much longer I will be in the hospital for… there may be some red tape around coverage of the drugs when I’m an outpatient vs inpatient so I may need to stay an inpatient just to get the drug coverage I need. 

It would be a lot easier for me to stay in here indefinitely, if everything else was going smoothly…I haven’t talked about it in any previous blogs because it’s not really my story to tell, but my father-in-law is very sick with stage 4 cancer and being unable to see him and unable to be there for my my mother-in-law and my husband to support them through all of this has been absolutely killing me. I got so lucky marrying someone whose parents I truly love and adore and I feel not only helpless, but like a burden for being just one more thing they have to worry about in the midst of everything else. Honestly sometimes I don’t know how my husband does it. He’s my hero, that’s an undeniable fact. I just wish sometimes I could be his, instead of being a constant ‘lemon wife’ as we jokingly call me now lol.

Anyways… I guess that’s my update for now. I’m gonna go eat some more Jello. 🤞🏻