This morning I vacuumed. Well, sort of. I rolled our heavy yellow Hoover over near the living room window where Carl the Rescue Ficus™ resides during the winter months and sucked up the brown, crusty leaves he’d shed.
Just yesterday, Dan had moved him to the back yard. (That’s where Carl summers.) And the 30-something ficus with the braided trunk customarily dropped his jankiest leaves all across the living room floor in protest. (Carl doesn’t like change.)
The dried up leaves bugged me, so I vacuumed.
But when I say “I vacummed” I don’t mean to imply that I was standing upright and dancing across the living room floor like some ’50s housewife in a floofy skirt and heels. Nope. I was sitting in a rocking chair, wearing the same pajamas I’d had on for three days, stabbing individual ficus leaves with the hose attachment. Because (as most of you already know) I have a brain tumor, am recovering from brain surgery, and am waiting for the side effects of my chemotherapy and radiation treatments to subside.
But wheeling that vacuum across the living room and sucking a couple dozen leaves off the floor would be an accomplishment for me even before I started collecting medical procedures at Barnes-Jewish Hospital in February, and if you bear with me I’ll tell you why.
***
A few days before I found out about the brain tumor, I had a bit of a breakdown at home. Some pretty significant life changes were headed my way, and I felt incapable. I walked away from my laptop one evening and went full metal drama queen on the bed. Dan came to check on me.
“I can’t do this,” I said to him. “And I don’t mean that like I’m overwhelmed right now and tomorrow I’ll get up like I always do and just figure it out. I’m physically incapable of walking. The pain is too much of a distraction to think. I can’t remember the last time I slept.” I started sobbing.
“Okay, well. What do we do? I mean, we’ll figure something out.” Dan tried to come up with a solution that would calm me. But nothing immediately sprung to mind.
“I’m just done. There is nothing left. I haven’t possessed a proper spoon in months.”
***
What I didn’t say was that I had this sickening feeling in the pit of my stomach that I was dying. The next day it would be followed by the squeezing sensation I would assume was an “MS hug.”
I would be wrong about that.
***
As luck would have it, I had an appointment on the calendar to see my primary physician on January 27. I can’t even tell you why I made the appointment in the first place. I’m guessing some kind of follow-up to something or other. It had been on the books long enough that I didn’t even remember scheduling it.
Dan went to the appointment with me. I was emotionally worn down for one thing. For another, I needed him to push me in a transport wheelchair to the exam room. My physical disability was so severe, I couldn’t make it on my own.
I guess what I’m trying to say is that this little vacuuming challenge I completed this morning is a BFD. I’m physically capable of doing more things today than I was capable of doing even before brain surgeons and radiation oncologists started slicing and zapping me.
And though there are a lot of things I still can’t do, I don’t feel like I’m dying anymore.
Since my brain tumor diagnosis (diffuse grade 2 Astrocytoma), I have been answering a lot of questions. I thought I’d do a “Brain Tumor FAQs” post to help manage my limited time and energy.
OMG! I just heard. How are you?
The answer to this one changes every 5 to 30 seconds. You know that graphic about recovery not being a straight line? That is applicable to just about everything in life, and medical procedures are no exception. I’m glad to report that after 71 days away, I am at home in Urbana. The overall trend is toward “better and better” but I have my days where it seems like everything sucks and I’m taking steps backward. I’m not shy about griping during those moments. I promise to let you know when things are bad and I need a little cheerleading.
Are you done with radiation and chemotherapy?
Sort of? The radiation is done unless future MRIs indicate there’s a need to zap the tumor again. Chemotherapy and I are, as Ross might say, on a break. There will be more Temodar—brain cancer chemotherapy in convenient pill form—in my future, but it will only be once a week every month. (One week on, three weeks off, lather, rinse, repeat.)
I imagine that my body will tolerate that schedule much better than the initial chemotherapy regimen, which was every freaking day for five weeks. Right now, doctors are saying to expect to do the one-week-a-month plan for 6 to 12 more months. Actual duration will depend on how the tumor responds and how the rest of my body tolerates continued treatments. You know, my mileage may vary and stuff.
I want to help. What can I do?
Tell me jokes. Laughter is a great distraction.
Carry on about your business like things are normal. When someone tweets how miserable their allergies are making them feel, I am not thinking “Yeah, but I have cancer. Count your blessings.” Rather I am thinking, “Better you than me, sucker!”
Donate to my YouCaring fundraiser. But only if you can. My medical bills are piling up, and as of today (4/24/17) I’m preparing for an appeals battle with my health insurance provider. They have denied a claim that exceeds $100,000 for the genetic testing that determined the best treatment course for my tumor. I’m not adjusting my fundraising goal, however, until I know for sure I’ve been screwed. I could win the appeal. Right?
What about the Fibromylagia diagnosis?
It’s still on my medical records as a thing. But my opinion, knowing what I know now, is that the rheumatologist who diagnosed me with it in late 2014 was lazy and just fucking WRONG. My thoughts on this topic are pretty complex, however, and I plan to do a more in-depth post of my experience. For now, just know that if you troll or harass anyone diagnosed with fibro I will cut you. It’s real.
You went to St. Louis for treatment?
Yes, at the recommendation of my primary physician (I will praise her more in a future post) I went to Barnes-Jewish Hospital for formal diagnosis and treatment. The hospital campus includes Washington University Physicians and Siteman Cancer Center. And every one of the people I was in contact with there was absolutely phenomenal—ER admissions staff, nurses, doctors, transport staff, nurse assistants, more doctors, residents, interns, food and nutrition employees, housekeeping, valet staff, radiation oncology techs, MRI techs, CT techs. I am seriously getting a little teary thinking about how well I was treated and how much confidence I had in the people taking care of me. I don’t know any of their salaries, but I know that none of them are making what they are worth.
This morning I vacuumed. Well, sort of. I rolled our heavy yellow Hoover over near the living room window where Carl the Rescue Ficus™ resides during the winter months and sucked up the brown, crusty leaves he’d shed.
