It’s been a minute, blog fam.
I clearly fell off the blogging wagon. A good while ago, at that.
A lot has happened since my previous post so, for the sake of getting everyone caught up before I (sincerely attempt) to start writing regularly again, here’s a rundown of cancer-related events.
- After 30 days of induction chemo followed by two rounds of consolidation chemo, I was declared in complete remission in September 2022. As you may imagine, this was a relief on so many levels. The cancer was gone, I’d kicked it’s ass, and that meant I could start resuming life as I knew it.
- I visited my best friend in IL for a week after I got into remission. It was the first road trip my mom and I could take following the diagnosis.
- I got to see my favorite musician in-person for the first time since COVID came knocking on everyones door. This was probably the highlight of my fall, to be completely honest.
- I was able to return to work in October and got to travel to Las Vegas for a conference that I’d been anticipating for most of the year.
- I went back to my best friend’s house in IL for Halloween and thank goodness I made that decision because, when I got home I had my monthly bloodwork and … it didn’t come back good.
- In November 2022 I relapsed. The leukemia came back and that meant it was time for more treatment. This also meant I was no longer considered favorable risk for treatment, I was now high risk because of the relapse. My oncologist informed me that they needed to get me back into remission and then I would require a Stem Cell Transplant (SCT).
- I checked back into the hospital on November 21, 2022, for anther round of chemotherapy. They used a different combination of drugs this time. Unfortunately this hospitalization proved to be much harder than the previous ones, in a number of ways…
- I got the flu in my first few weeks at the hospital. And let me tell you .. it. was. awful. AWFUL. I’ve never been as sick in my life as I was. I had no immune system when it came on, it almost killed me (literally).
- While I was sick I was getting codeine cough syrup to help with the cough, while also continuing to get my sleep medications and other meds, which ended up causing a pretty wicked physical reaction and triggered the start of what would be a complete mental spiral for me.
- I ended up on oxygen for a week because my O2 numbers wouldn’t stay up.
- In the middle of all this I had a bone marrow biopsy which showed the chemo didn’t work to get me into remission. I was so physically sick, and in such a bad head space, I asked my doctor if we could talk about assisted suicide options (which isn’t legal here in MN but I was bit delirious). I asked if I’d be alive for 2023 Christmas and my oncologist said it wasn’t looking good. That’s when I decided I was just done and I wanted to die because it seemed like a much better option than having to continue to go through what I was going through. Even after I started to feel better I couldn’t stop focusing on the fact that I might not be around within a year and spent many nights crying myself to sleep while thinking about how I could end everything as easily and painlessly as possible, for myself and the ones around me.
- I started another round of chemo the day after I got the news. They ended up doing two back-to-back rounds of that type of chemo, which took another HUGE toll on my body. I dealt with all the normal side effects that usually creep up on me – nausea, fatigue, mouth sores – but they were intensified and lasted longer because my system was so depleted and my marrow wasn’t reproducing cells as quickly as it could.
- I had blood cultures come back positive for bacterial infections and I had a positive TB test, which resulted in mass chaos involving Infectious Disease doctors, relocating me to an airborne isolation room, and even more precautions.
- This was followed by two negative TB tests and three negative sputum tests, so it was clear I didn’t have TB, but they elected to put me on a nine-month long regiment of medications to treat it as latent TB. (Insert giant eye roll here.)
- My oncology team reluctantly let me go home on December 20, so I could at least spend some time with my cats and Mom and be home over Christmas. Unfortunately I never felt well while I was home, continued to have all kinds of issues with nausea, fatigue, fever, etc. I spent Christmas Eve and Day on the couch in agony because I was sick and started having GI problems that were causing quite a bit of pain.
- The next week I spiked a fever and ended up back in the hospital. One abdominal CT scan later I found outI had Proctitis (not going into details about that here but, go ahead and Goggle if you’d like). This was SUPER painful. Like, so bad I couldn’t sit down, I’d be crying out in pain from the bathroom and even in bed. I finally caved to opiates to help with managing the pain, because it was so bad. I got more IV antibiotics to treat this and ended up spending another 2 weeks in the hospital. (New Years Eve was spent in the hospital, in bed by 9pm because I was so exhausted and yucky feeling I couldn’t keep my eyes open.)
- I got released on January 9, 2023 with home IV antibiotics. I was finally starting to feel better and it was SO GOOD to sleep in my own bed, be around my cats, and not be stuck in a hospital room anymore.
- I met with the transplant team at the University of Minnesota on January 16. My transplant oncologist is a hoot, he’s close to my age, has been in a punk rock band, just a pretty cool dude. I was eligible for transplant, we just needed to see if I was in remission and, since I didn’t have a sibling donor, start working on the donor process.
- My best friend from IL came up to visit over my birthday. She stayed for a week and was there when I got a call from the U of M that they’d found three 100% (full) donor matches for me within four days of starting the search.
- A bone marrow biopsy on January 25 showed only 2% cancer blasts circulating in my marrow, which put me in the remission category.
- As it turns out, coordinating stem cell harvesting with the donors turned out to be a bit of a challenge. I was initially planning to start my pre-work and have the transplant mid to late February, which then got pushed out into March. And then the day my pre-workups should have started I found out I relapsed. Again.
I checked back into my hospital last Monday, March 27. I just completed another round of IV chemo, using some drugs that are familiar but at much stronger doses, and some drugs I’ve never had. I’m on a chemo pill through April 10 and will have my next bone marrow biopsy on April 11.
The good news is that I have a fully cleared donor, who is on hold, which means as soon as I get into remission they can start my pre-work and begin the stem cell harvesting process. There’s always the risk of relapse when you’re waiting for the donor, so this was something I had prepared myself for emotionally while I played the waiting game.
Should my biopsy come back showing I have over 5% blasts in my marrow, then we’ll look at either more chemo, or some clinical trial options. (We did explore clinical trials before I started this most recent round of treatment but, the one in MN wasn’t accepting any new participants and the one down by IL that I was looking at didn’t get back to my oncology team quick enough.) So, here we are!
I am in a MUCH better headspace this time around. I’m positive. I’m fighting this. AML is not stronger than I am and I refuse to let it win. I’ve found some good support groups on Facebook that I’m in, including one for young women AML patients and survivors. Having that community is nice because they understand what’s happening and we can talk about our experiences.
I’m still able to work full-time on a remote basis. I can be productive during this, I can continue to contribute to something, and continue to do what I’m passionate about.
I have the most incredible support network around. Between my friends, family, co-workers, colleagues, and people who I’ve met along the way, there’s so much positive energy, so many prayers, and lots of good juju coming my way.
And I am BEYOND grateful to have my mom as my caregiver throughout this. It was a godsend that she could retire early when she did because she’s been my rock for the last 10 months.
So, as this post is titled, the journey continues.
I’ll try to do a better job of blogging along the way. I’m also trying to do more updating on Instagram this time, as well as looking at doing some blogging over on YouTube.
Thank you to anyone who is still around.
Until next time…
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