I've been wanting to write this post for a while but haven't been able to get myself to do it. Partly because it deals with a hard/ugly time in my life, partly because I don't know that anyone cares:) But because I know there are other people on similar journeys out there and because it takes a village, here I go (before you panic remember this is written now about something that happened a couple of months ago)
When you or a family member is going through a life and death situation, it's a roller coaster. When you're going through an adoption, it's also a roller coaster. Lastly, when you're going through both it's just plain shitty (sorry to offend any of you with that word). As far as we knew when we got Olaf, treatment had been working wonderfully. The combo pack of chemo (aka IV poison) and radiation (aka beam poison) was shrinking the tumors with magnificent responses.
Myla and Olaf take a ballet class every Monday and because it's been winter and they're usually bundled up, this is often the only time we see their little arms. One day we noticed Olaf's cancer arm seemed abnormally large. We were heading in for chemo a couple of days later so we didn't worry too much about it.
The day she was admitted I was working and I knew things couldn't be good when our Nurse Practitioner (also a co-worker and friend) approached me saying she wanted to talk to Andy and I about Olaf. The walk to her room seemed endless and my heart was beating what felt like 1000BPM (beats per minute, sorry non medical people). The NP proceeded to tell us that we would not be admitted because the size of her arm was concerning for tumor growth. Cue nausea...
How in the world could chemo just all of a sudden stop working??? My mind was blown. I was quickly educated that this is often what rhabdomyosarcoma does. It's a tricky little cancer and has ways to learn to adapt to the various poisons we're throwing at it and get away with it. Rhabdo is a jerk.
We made a plan of what do to from there which involved MRI's, CT's, ultrasounds, and eventually another admit. The few days between hearing this news and answers were some of the longest of our lives. Sure, we lived our lives, went to work, took care of the kids, etc. but I'm pretty sure we were both zombies. All of the "what ifs" ran through our heads constantly making it almost impossible to focus on the potential positives.
What did they find you ask? Nothing. The tumors continued to shrink just like we thought they were doing all along (for those of you who are medical and wondering why surgical intervention wasn't an option it's because the tumors are too wrapped up in the nerves). Unfortunately the re-admission was the night before Myla's 3rd birthday...cue 24 hours of this mama crying (psychologically what am I doing to my other two children???, etc.). Right now we're calling it lymphedema...it's swelling from long term affects of radiation. The treatment? A compression sleeve, and of course my 3 year old picked bright pink. Just another reason for the good people of San Ramon to stare at my black/latina child with no hair, #awesome. The good news: everything worked out, we all made it to Myla's birthday party and the chemo continued to work, praise God.
It's not that great for everyone though and that's going to be my struggle the rest of my life. Sometimes, the chemo stops working. Families continue to suffer with the losses of loved ones, pain continues to persist. I hate cancer. I hate the suffering that cancer causes. I hate the pain that cancer causes. I'm so glad that at this point, Olaf's chemo is still working and I'm so sorry for any of you out there where it stopped working. That totally sucks.
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