Sounds pretty straight forward, but I don’t mean that I just hate cancer in general. I don’t want to hear about it anymore. I don’t want to see the photos of bald kids I don’t know, or some pink ribbon logo plastered everywhere. I’m just so DONE with it. And yet, I get it. I know about wanting to support ‘the cause’. But I really just want it completely out of my life. Maybe that sounds crass. But it’s how I deal with it… to each our own, right?
But on the flip-side, I have a lot of empathy and compassion for people I know who are dealing with cancer. I want their days to be the best they can be. I understand what it’s like to be a cancer survivor, and never know if it’s going to come back or not. I know what it’s like to watch a parent deal with the aftermath of cancer radiation (and multiple surgeries/sites because of cancer), and have her mind destroyed by dementia from that radiation. The cure led to her decline…
I’m not some cold, uncaring jerk. I just don’t want to hear about the grand general cancer cause. It’s more personal than that. Maybe that’s it. I don’t like it being some token thing to climb on board its bandwagon. It’s great that people want to advance research. But don’t send me the flyers.
When I was diagnosed with leukemia on March 30, 2010, I wasn’t all that surprised. I’d seen the blood work that was done as part of my routine diabetic annual exam, and knew it was BAD- like ‘buy-a-shovel-and- hire-an-organist’ sort of bad. But I was still kind of in shock. I’ve had enough weird medical stuff go on in the past few years that nothing really cuts my world to pieces, but I was nervous about my recovery. When my oncologist told me I had the best kind of leukemia in terms of survival rates, I sort of closed my mind to anything but being cured. That was that. Get on with it.
Chemotherapy wasn’t as bad as I thought it was going to be, when I was in the hospital. Yeah, I puked once and was extremely tired. My hair fell out- except for a few strands in the front (the first time). Dad called me from my apartment when he was looking in on Mandy (my dog), and asked where some scissors were so he could come and cut the stray hairs off. I told him the kitchen, and he showed up with poultry shears…not what I had in mind, but it got the job done. Chicken scissors for my hair trimming – oh well; something to laugh about!
The nurse I had the most often during the day had ‘the talk’ about ‘what if’ things didn’t go well. What did I want done. I have advanced directives, and talked to dad and my cousin, Jane. We were all on the same page. I’ve had ‘the talk’ with countless numbers of patients and/or their families in the past. Being in the bed was not good. Nope. I didn’t like that part at all. But it was necessary.
I got an ear infection that swelled my right ear completely shut. I couldn’t hear squat. The ENT doc came in and had to pry it open to stick a ‘wick’ in for the antibiotic drops to seep down to the infected area. Then she came back a few days later and sucked out the gooey stuff with a little metal vacuum. That was an odd sensation. I asked her to please avoid going deep enough to slurp out gray matter. She agreed. That ear infection drifted into my neck, so I swelled up like some lopsided mumpy person. I was in isolation for about 5 of the 6 weeks. I could walk in the enclosed hallway with a mask, and I could walk around the room. I was attached to an IV for more than 5 weeks (nearly all of that on Vancomycin and Gentamycin for my friends who know what sort of antibiotics those are; if Vanc and Gent can’t kill something, it probably can’t get killed). I don’t think that thing was taken down until a day before I went home. I was too tired to do much of anything; got a heel sore for my lack of oomph. The day I wanted to go find chocolate in the gift shop was a big day !
I got 25 units of platelets and red blood cells combined. I might not be Swedish anymore (or Norwegian – my biological ethnicity). I’d developed purple polka dots everywhere from mini-hemmhorages. My platelet level dropped to about 7. It should be around 150-450 (actually measured in thousands, but nobody says ‘thousands’ when they talk about the counts). So I had to have the platelets (13 units), or die. I was at the point where a sneeze could have caused a stroke. I was very anemic, so that’s why I got the 12 units of red cells. Not enough of those to carry oxygen around my body. I think I’m finally understanding the phrase my oncologist used this last couple of weeks….I was ‘dead sick’. But I watched ‘Funniest Home Videos’ for 3 hours each afternoon and evening, and laughed as much as I could.
Neupogen/Neulasta…the shots to increase my white count were worse than any injection I’ve ever had- including spinal taps. The pain from inside the bone was indescribable. Dilaudid didn’t fix it. I got those shots every weekend for about 3-4 months during the arsenic, as well as a few in the hospital during that first 6 weeks when I was first diagnosed. I didn’t know what was causing it at first, and didn’t want to be a wimp, so when the tears came, I didn’t press the call light. I didn’t want to be one of those patients. When my nurse came in and saw me crying, she told me that she’d call and get some pain meds ordered- and to not just sit and hurt. IV Dilaudid. It dulled the pain, but nothing fixes that sort of pain. When I saw the ad for it in a cancer magazine in my oncologist’s office, and it suggested using Tylenol for that pain, I was offended at their lack of awareness of their product.
Then I was told I’d be getting arsenic infusions. Arsenic. The stuff that is normally discussed on forensic shows, ending with someone getting a life sentence. Seems that arsenic fixes the subtype of acute myeloid leukemia that I had. That and some stuff that is like accutane on steroids- ATRA for short. The combination (along with two other pills) reconstructs chromosomes that cause the leukemia. I ended up going into remission about 3-4 weeks into the first hospital stay. That amazed me. More reason to not get all bent out of shape. The process wasn’t pleasant- but no need to get all worked up. SO I got 2 25-dose cycles of arsenic. I had to be on a heart monitor, so drove to the hospital 50 times for those infusions. I drove there on Saturdays and Sundays for the bone-crushing shots to increase my white cell count every weekend while on the arsenic. And at home, I was like a blob. The Monday that began the very last week of the arsenic, I got shingles. On my butt and crotch. That wasn’t very nice. But it wasn’t the horrible pain I’d heard about. The shot side effects were much worse. But the shingles were quite annoying. Mostly because they prolonged the end of the arsenic.
Next was a brief course of ‘the red stuff’ and the anti-puke infusion that went along with it. In the middle of all of that, I had a MUGA scan (heart function test), that showed my heart was on the edge of failing…so no more of the red stuff. But my hair fell out again… leaving a sideways Mohawk from ear to ear. THAT had to go… I think that’s when dad bought me a new hair clipper, and came over and got rid of that (he did the trimming, and took the clippers back home with him in case I got some wild idea to mow my own hair, and end up slicing up my head). It looked like I had a dead animal lying across my scalp. I never minded being bald- but the quasi-PETA poster look had to go. After that, my hair grew back slowly, and straight UP for about 3 inches before it finally fell over and looked like hair. Before that, it was like a porcupine and chinchilla did the wild thing and left their offspring on my head. Bah.
After the arsenic and red stuff, I had to take three different pills (ATRA, M6Mercaptopurine, and methotrexate) in various doses for one year. I made it about 11 months. I hadn’t expected the muscle and joint pain from those medications. I’m not one to read up on every side effect known to man when I’m taking a medication. Even as a nurse, I figure if I know the really bad stuff that can happen, I can live with the rest. Just get enough information to not end up dead. Inconveniences in order to survive seemed a reasonable trade off. I thought I’d torn my right rotator cuff- my shoulder hurt that much. My back and legs felt like I’d been flayed with a serrated machete, and rocks pressed into my bones. I told my doctor I’d tough it out; the hydrocodone was a joke, but if hurting meant staying alive, I’d put up with it. He said I’d had enough. He’d been right about everything else, so I’m trusting that it won’t matter that I didn’t have that last month’s worth of those 3 pills.
So I guess that’s why I hate cancer. The memories aren’t good! I’m still in the first year of monitoring post-chemo, and will have routine bone marrow biopsies and lab work for the rest of my life- though the frequency will diminish. In April 2015 I will be considered cured. I do have some days when I wonder if I’ll be lucky enough to not be re-hospitalized for relapse. There’s always that ‘is it really gone?’ in the back of my now hairy head.
And yet, I’m so incredibly fortunate and blessed to have been diagnosed with a cancer that can be ‘fixed’. I’m not unaware of that. My outcome is expected to be excellent, and I’m very aware that I could have been long gone had it been a different subtype of the same leukemia. I don’t take anything related to my treatment for granted. I know people may find my anger unjustified… but we all deal with cancer in our own ways. I can’t stand hearing about it in a vague, disconnected sense. But when I know someone, I want to be a support for them, because I DO get it. I just find it too personal to tolerate the ‘poster people’ for cancer. I wish them ALL the best… but just not in my face. Maybe this is offensive. Fine. But it’s honest, and it’s mine.