The Longest Bad Week
With each chemo round it has taken longer and longer for the “Bad Week” to end and to start feeling good. This was certainly the longest bad week yet. It was all of the same ol’ issues - severe bone pain, aches all over, hot flashes, intense chills, no energy, fever, and overall blah feeling - but it’s finally over. It took until about Wednesday of this week to finally feel almost normal again where I could stand without pain for more than a few minutes. I even made dinner and did dishes which is a vast improvement from last week where I couldn’t even get off the couch. Last week I got to see my nurse mom every day to administer the 18 shots that brought me to tears from the pain. Thankfully she stayed and gave me foot rubs everyday too! Then she convinced my kids to give it a try (pictures below). I’m really hoping that the next few rounds of chemo won’t wipe me out like this last round did - but I’ll have to wait and see.
I have my PET scan scheduled for Thursday 12/3 (2 weeks) and I’m terrified and anxious and excited - the other cancer kids call that Scanxiety. It’s really hard not to think about the results of that scan all day long - like maybe I can figure it out in my brain and convince myself the cancer is gone or should I think that it’s not gone so that I’ll be pleasantly surprised if the scan comes back clear? Which is better? Being right or being happy? Okay, lets talk about some facts we know. After 3 rounds, my tumor had shrunk in half. I’ve now completed 6 rounds. Some of the cells from the last scan looked like they were already dead. Originally my oncologist thought the tumor would be gone after 4 rounds. They weren’t able to increase my chemo dosage like they wanted to because of my side effects and low white count. There are so many variables and I have some major doubts that I have good news coming. Oh and my leg is still numb. You may or may not remember one of the first symptoms I had when this all began was leg numbness (probably why it was initially misdiagnosed as a pinched nerve). Now we know that the numbness was because of the size and location of my tumor - it was cutting off the circulation to my leg and it had been numb from hip to knee for months before I was diagnosed. Since I started chemo in July, the numbness has gotten better, but hasn’t ever gone totally away. Right now it’s still numb from hip to 6 inches below my hip. A considerably smaller numb area, sure, but it’s still numb. I suppose with nerve damage it’s possible it will never come back and that sucks - grand scheme of things I guess it’s not that bad, but still. I keep thinking the cancer won’t be gone till the numbness is all gone, but perhaps that’s just here to stay. Definitely better than the pain from the tumor which has been completely gone since completing round 1.
Next thing on the list in my brain right now is my hair of course (see video below). So I’m down to about 2 or 3 hairs on each eyebrow and absolutely no eyelashes. The hair on my head has grown to about a quarter of an inch - but it’s certainly not consistent. It’s almost like the chemo killed 80% of the hair follicles, but the rest remain. There’s a lot of space in between the hairs, but the hairs that are there are growing. I know it’s going to be years before I have real hair again and that’s such a discouraging thought - one of many thoughts that make me anxious for the recovery part of my cancer journey. Like people are going to think I’m sick for so much longer because I’m going to look sick until I have a full head of hair. I follow so many other young women who are at varying stages of their cancer journey and seeing their little pixie haircuts after an entire year of being cancer free is so hard. I miss ponytails and messy buns.
If all goes according to plan (my oncologist’s, not mine) then I’ll be done with cancer by the end January and return to work mid February and I’m really struggling with the thought of returning to “normal life”. How do I go back to the old routine knowing how close I came to death not to mention the ongoing fear that this cancer could still kill me in the future. Remember all of those trivial things I used to care about? Yeah, none of them matter anymore. I’m a different person now - I can’t just pretend I’m going back to that old life. That old life doesn’t exist and that old Molly doesn’t exist. This new person is kind of a mess right now and doesn’t know how to move forward. I’m sure it’s going to take a lot of time to figure out what to do now. I feel like I want to do something bigger now, more important, more purposeful now that this huge life changing event has happened to me. I want to help other people who are going through this or volunteer or something. I don’t want this to be all for nothing. I don’t want to forget that I did this big thing when I go back to work and back to normal life. I also don’t want to take my life for granted anymore. I’m really trying hard to take inventory of myself - my emotions, my pain, my self esteem - making sure I’m mentally checking in with myself so that I don’t get overwhelmed. I feel myself get stressed out and tense because I’m so anxious about things I can’t control - I know we all do that, but it’s really not helpful. I’m trying to take a step back and focus on things I can control and to be grateful for where I am now and present in the moment. It’s worth a shot anyway.
