After my butchered biopsy (which I still have a pretty wicked scar on my neck from), I had my first PET scan and my first bone marrow biopsy. The PET scan wasn't as bad as what I thought it was...just very time consuming. Unlike CT scans and MRI's, you get injected with this radioactive dye and you have to stay in solitude for I think about 45 minutes or something like that. Then you go into a CT scanner and the radioactive dye picks up the glucose from the cancer cells in your body and confirm what is there. I find these easier than previous scans however there is a lot of radioactivity so they can't be done back to back. The bone marrow biopsy is definitely a pain in the rear...and I mean that quite literally. To be light on the subject, they stick a needle into your hip bone and extract bone marrow for testing. Luckily I opted to get some meds to make me a loopy and tired but I'm still awake during it which is a bit unpleasant.
However I made it through and got the good news that I didn't have any cancer in my bone marrow. This meant I can move on to the next step...chemo.
Now when you have to go in for chemo every other week, they suggest you get a chemo port put into your chest...this makes accessing a vein a breeze....the procedure is quite awkward but done rather quickly. Then I went to my first chemo treatment a couple days after that. I was on ABVD chemo...which are four drugs administered once every other week for 6 months. My mom luckily was able to work that in her schedule and brought me to every appointment from July to December. If it weren't for her, I don't know what I would have done...she was there holding my hand through it all...thanks Mom, I love you.
Anyway, as I went through every treatment I noticed my body didn't react like a standard cancer patient...which could be because I was generally in good health and I was young. I didn't loose ALL of my hair but lost about half and thinned to the point where I had awkward patches. I also didn't experience much nausea until the last two treatments in December...those were the hardest. Instead my biggest symptom was mouth sores but even went away with each treatment. And despite the emotional stresses I went through and the fact that I had to ultimately take disability leave in August, I was one of the lucky chemo patients. By the end of it all I celebrated Christmas with family with the thought that the new year would be better and had so many plans. I was going to go back to work, I wanted to travel to Europe in the summer, I wanted to get an apartment, and I wanted to go back to school. But everything was completely demolished the moment I had my first PET scan after chemo.
The scan came back with a little tiny acorn of a cancerous reading in my chest. We thought it could be a false positive so we aimed to try again after a month (you can't do PETs back to back). When I did it a second time, I got the awful call from my doctor telling me I had to skip work and come in. There she told me words no person ever wants to hear. Not only did my cancer come back, but it grew 3X it's size in one month and was past the point of chemo/radiation. I would ultimately need a bone marrow transplant with a donor and she left me with a 5 year life expectancy. This was coming from the same doctor who told me just last year that this was curable and all I needed was chemo. I was broken...and I wouldn't have it.
I sought a second opinion at Johns Hopkins in Baltimore and there they actually gave me options. They would put me on immunotherapy and then because my bone marrow came back negative for cancer a second time, I would be able to use that for my bone marrow transplant. It's quite complicated when explaining how it works, and I will probably mention it when the time comes. But for now....this is what I face....and this is latest update.
I start my immunotherapy on May 6th and I do this every 21 days for 3 months and then I go into prepping for my transplant. I'm very nervous, very scared, and very very on edge about this. But as I've learned this past year...I need to take one day at a time. If I do everything Johns Hopkins says, I will be able to stay alive for most likely longer than just 5 years...if I do nothing, I won't even make it to the end of this year....and that's not an option for me. This may be a never-ending battle...but what life isn't? And this is the thought that makes me feel normal.
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