Today is another milestone. January 4th. Three years since my initial diagnosis. I thought I would pause and reflect. Here are my 2021 and 2020 reflections.
You do not ever forget the moment a doctor tells you that you have cancer. The good news is that today, this year, 2022, I have no evidence of disease (NED) in my body. Hooray!
In looking back over the last three years, I know, the last two sucked for everyone with COVID and all, but for me, it has been three challenging years.
From January - June in 2019 I had 6 rounds of RCHOP chemotherapy, loss of hair, a myriad of chemo side effects and fun and then a pet-scan that showed no evidence of disease (NED).
July 2019 - December 2020, I continued with maintenance therapy from that point on and received the R in RCHOP, Rituxan (an awful drug that caused terrible side effects, and kept me on constant steroids, that my body does not like). This happened every 8 weeks through November, 2020.
Because I was still getting infusions so often, I was considered immune compromised and when the world started to open up a bit, I had to continue to work from home even after everyone returned to work. Actually, I did show up to the office for 3 days in October of 2020, until I got booted and told I needed a doctor's note to stay. I did get the doctor's note, and it said to stay at HOME. Ugh. Through this 16 months of maintenance infusions - I got scans every 6 months. I cannot lie, each time, it was like, oh no - is the cancer back? Luckily, I made it 16 months, unfortunately, I needed to make it 2 years for the odds to really work in my favor.
November 27, 2020 - cancer returned. If you recall, it was another lump in my neck in the same location as original lump and they weren't sure if it had spread anywhere else. They ordered a pet-scan, and I met with the radiation oncologist as the plan was to just zap it. Fast forward...to scan results - cancer had spread and was in my chest as well, radiation was off the table - and now we were looking at more chemo.
January-June 2021, 12 days of chemo spread over 2 days every 4 weeks for 6 months. No hair loss, some side effects but made it through that with fewer side effects but a LOT of anxiety. As the reality of having a stem cell transplant became more real.
July 2021, remember, it was #livelifejuly - I had a lot of tests but no treatment, a little break was nice.
August 2021, was 18 days in the hospital, and a stem cell transplant on 08/23/2021 - my new birthday.
September - December 2021 - Recovering at home.
2021 Recap by the numbers: 23 chemo treatments, 3 pet-scans, port placement and removal, stem cell harvesting, stem cell transplant, blood transfusion x 2, platelet transfusion x 2, over 50 blood draws, lots of anxiety, lots of love and lots of support! Let's not do that again.
January 2022. Still living in a bubble, especially with omicron out there but luckily, I am getting stronger everyday and feel pretty good. I have some residual side effects but nothing too awful. Life is good.
Since they wiped my immune system, they also cleared any and all vaccinations, including the ones we get as babies...and COVID. So, December 3rd, I got my first dose of Pfizer vaccine again, but of course they are saying it is my booster, since they do not know how to handle someone with stem cell transplant and covid vaccines. When I went to get my 2nd dose (or 4th dose which in an immune compromised person is not unheard of) I was turned away saying that this is not in their protocol (oh I even had a doctor's note). Upon leaving, they said if I had come in and lied and said I lost my vaccine card, they could have done it. So tomorrow, I am trying again. Then we will see if I can actually get the 3rd dose that my doctors want me to get (all within 21 days of each other) I am lucky that I do not have any adverse reactions to the vaccines.
In February, I will have another pet-scan to check for any evidence of disease again. I also start the 2 year long process of getting revaccinated - I will get a schedule just like a newborn and follow that - should be fun! I hope there are no side effects - as a baby, even if there are, who remembers and you have no idea what they are since you cannot speak yet - haha funny not funny. I am also hoping to return to the office in February (fingers crossed).
In full disclosure, I do have a small lump in my neck, in the same location both of the other lumps appeared, but it is not registering as cancer on the scans so we are just keeping an eye on that - they say, it might just be some stubborn lymphoma - and if it is we will just blast it with some radiation (as if that is so easy). So, I am just tucking that away, it could be anything.
I do apologize, to those following along, for the recap, but this blog is my way of processing all that I am going through - it felt like an appropriate time to reflect on the past 3 years, and remind myself all that I have been through. I see pictures of myself from three or four years ago and think why can't I be back in THAT body - that version of myself, but I realize, not only was THAT body riddled with cancer (no thank you), but I needed my body to be strong, to fight, and in time, I will get a version of myself back that I am comfortable with.
And here is to 2022 being the year of NED, goodbye cancer, please do not come back. I am really looking forward to getting back to living life again. Happy New Year. and Thank you. xoxo
