A very wise and beautiful drag queen once translated her mother’s favorite expression “Don’t get me started” to “Are you ready? Because I’m starting.” Well, don’t get me started…. but yesterday was one of those days where everywhere I turned I had to breathe and think about just how much anxiety I’m willing to spend on this bizarre situation and how shrill should I get when trying to make sense of it and get my way.
So this is day 29 of my first round of VTEPA. With previous chemotherapy I was on 21 day cycles where I was meant to spend the first 5 days in hospital, then get really sick on paper (low platelets, white blood cells, hematocrit, and red blood cells) between day 7-14 and then recover on days 14-21 to start over again. Well here I am on day 29 and all of my blood measures are the same as they were on day 7 when I first bottomed out despite 6 infusions of platelets, 6 bags of red blood cells, and an injection of human growth hormone. (Neulasta – a drug meant to improve my white blood cell counts) It seems that VTEPA is great at killing lymphoma tumor cells according to my CT scan… and also it seems to have broken my ability to make my own blood cells. I find this a little disturbing.
I learned all of this yesterday during a waiting room day from hell. It started with blood work at 8:45am (I never had to be at my regular job until 9:30 and it was much closer to my house). By 10:00 my nursing coordinator Mary comes out and sweetly tells me that she is sending me to the ER because my potassium level is “critically low” and that they need to hook me up to a heart monitor. She also informs me that my labs are just as bad and a little bit worse than they were on every one of my last visits so I will have to get more blood and more platelets today and my second round of VTEPA will be delayed longer. I’ve heard from other patients that the ER is the last place you want to go when you’re neutropenic (lacking immunity in each of these blood components) because of the risk of exposure to other sick people who can infect you with god knows what illnesses they carry around on their scabby unwashed bodies. Insert increased anxiety level here.
I walk over to the ER, shrieking incredulously over the phone to my dad along the way about the “cardiac emergency” I’m apparently having despite the fact that I still feel perfectly fine. He advises me to wash my hands a lot, stay as far away from people, and touch nothing in the ER. Got it. Check. Cripes!
So I check in and turn on my charm, hoping it will get me a good clean room efficiently, also flashing my face mask and paper-name-tag-jewelry that they put on me at the outpatient clinic to show that I’m vulnerable and treatment has already begun and could they hurry the hell up to get me out of here?!? No sooner did I hand them my insurance card and ID did cheerful nurse Mary pop into the scuzzy little waiting room and rescue me back to the clinic. She explained that the potassium level could have been a mistake in the lab results and they want to recheck it and sorry for jumping the gun on the ER.
Now you know I’d rather walk on my lips than talk bad about someone, but this kind of giggling schoolgirl “oops” accountability routine is something I’ve grown to expect from this person and it’s a reason I’m grateful that I don’t often have to deal with her.
When I get back to the clinic I get bounced back and forth between the lab to draw one tube of blood at a time from each arm rather than my painless and already hooked up portacatheter (this happened three times), to the clinic where I think I’m going to see my doctor or PA… but don’t, to the infusion center waiting room where I’m supposed to receive my infusion of blood and platelets. All of the front desk staff and lab techs laugh at me for coming back to see them again and again, meanwhile I’m getting more and more frustrated that a provider (doctor, PA, or nurse) isn’t coming out to tell me what the hell is going on. I’m still coming down from that brief ER visit and am worried I may have to go back there again. Luckily I packed mother’s little helper and had a little nip… Ativan, cancer cocktail of choice!
So I finally land in the infusion center around 3:00 to get these blood products I was promised at 10:00 and stick around until 7:00 to finish because I’m a good vampire, I don’t gulp it all down at once like some kind of glutton. During this time I was able to email my PA and get an idea of what this means for the next phase of treatment. Her answer was basically “I don’t know.” I’m supposed to come for more labs and probably blood on Friday, then another check on Monday when I’ll meet with her and Dr. Langston. At that time I’ll be: 1.) recovered and start Round 2 of VTEPA 2.) not recovered and begin conditioning for stem cell transplant or 3.) get spot radiation for the giant tumor in my belly and then move on to stem cell transplant.
My preference would be to skip round 2 of VTEPA, especially since stem cell transplant conditioning involves “superchemo” anyway and I’d rather not expose myself any more toxic chemicals than I absolutely have to or risk completely shutting down my ability to make my own blood. I spoke to my transplant nurse today who is actually going to move forward with screening my brother to begin transplant just in case we decide on that option. He needs an EKG, Chest X-Ray, some blood work, a physical, and to begin taking human growth hormones to make his stem cells flush out into his bloodstream. I take this as a good sign!
Now, I try not to complain but because I’m thinking and talking about cancer all the time it feels like complaining. It’s serious stuff and tends to inadvertently trump my friends’ regular life stuff. I don’t mean to trump you. Please don’t subjugate your regular stuff just because my stuff is medical or whatever. I also try to talk about non-cancer things too, like did you hear that thing on NPR this morning about Fox News/News Corp’s dirty tax attorneys getting the IRS to pay them $4.8 billion in taxes instead of paying taxes themselves? Now that’s something to complain about! But don’t get me started…