I rested most of Thursday, October 16th but attended the Leukemia & Lymphoma Society’s Young Cancer Survivors dinner at Rosario’s on Thursday night with my Mom/Caregiver in tow (she’s officially promoted to “slash” status alongside the likes of quadruple threat Britney Spears: singer slash dancer slash actress slash certifiably crazy person). I’m starting to develop a post-chemo routine in that I know that I feel relatively good the day of and the day after chemo, but the real test hits Friday through Monday. The other identifying day-after-chemo factor is that I want to eat anything and everything within a three mile radius for the first 36 hours (“ooh….Dairy Queen Beltbuster!” “Do I smell BBQ?” “Mmmm……lima beans.” “Did someone mention all-purpose, unbleached flour?”) It was pure BLISS that the LLS dinner was fully paid-for and served as a private buffet at a popular upscale Mexican restaurant near the Riverwalk. I was in enchilada and margarita heaven. The people were awesome and it was quite comforting to commiserate with others treading through similar side effects such as hair loss, neuropathy (numbness and tingling in all four extremities), dry skin, and, of course, food issues. By 8:00 I had hit the proverbial wall and by 8:30 Mom was guiding me to the car by my elbow. I’ll only briefly mention that we got so lost downtown that it took us 45 minutes and a scenic route of San Antonio’s warehouse district and strip clubs to get home, but it mattered not since we were both satisfied—if bloated--and looking forward to a long night of sleep with the windows open. It should also be mentioned that I informed everyone that I was eating for two, as in two meals. I had an ultrasound scheduled for the next morning and couldn’t eat between the hours of midnight and noon.
The next morning I had an appointment at a radiology clinic for a liver ultrasound. It is apparent that every time I cough, laugh, bend over, etc. I can feel the presence of something in my abdominal upper right quadrant. After mentioning it in passing and palpitating it on her own, my doctor raised the concern that it was an enlarged liver as a result of all of the drugs onboard. The ultrasound took 10 minutes and showed nothing remarkable—yay for once!!!—and I was sent home with the tech’s preliminary stamp of approval. Since I was still coming off of chemo, I returned home and ate a hearty lunch of something completely unhealthy and not worth mentioning here. Just use your imagination and go with it….
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| $220 to NOT upchuck |
You won’t be surprised to learn that I take 538 different prescription medications every day. Okay, so that’s a slight exaggeration. While I do take a lot of meds, my most beloved, cherished, and therefore expensive one is called Emend. In the medical world, Emend is known as a chemotherapy-specific anti-emetic. In other words, it’s a nausea med developed for patients who take a highly vomit-prone chemo and is thus quite necessary for Hodgkins patients on ABVD. Forget those prescriptions that shrink tumors and seek to achieve homeostasis by de-calcifying said deconstructed tumors……and other medical BS….I want the good stuff. Give me muscle relaxers, Xanax, and anti-nausea drugs any day. I want to feel fabulous; in fact, better than healthy. Shouldn’t there be some benefits to being sick??? I am aware that the concept of feeling FAN-EFFING-TASTIC while physically sick is backward and twisted and I do not care.
Since Emend costs $110 per pill (you read that right: not by the bottle or month, but per PILL), I decided to try to forego it this month just to see if I’d really need it since I was also prescribed Compazine for mild nausea and Kytril for severe, generalized (read: non-chemo-specified) nausea. All things considered, I was slightly shaky with a sour stomach but circumstances were otherwise tolerable until Friday, at which point I commenced my routine heave sessions for several days whenever I tried to eat. When I wasn’t vomiting, I took note of a bizarre new side effect that had absolutely no biophysical explanation: I couldn’t open my mouth all the way. I consciously started eating things that didn’t require full-mouth exposure a la soup (which, yes, I am sooooo sick of), rice, pasta, cottage cheese….basically anything involving minimal chewing. More on this sexy quality later….
Side note: Hey there you fine, eligible bachelors aged 28 to 40 with good jobs and an affinity for wine: you too could be the accoutrement to an Irish-white bald head with food issues vomiting into a porcelain toilet or emesis basin. Purrrrrrrrrrr……
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| Stock photo of Thrush....to elicit sympathy and all.... |
Mom left on Sunday when I was pathetically weak but feeling otherwise decent, and I spent the next few days discerning who is the babydaddy on Maury and why everyone seems shocked when they are presented with a twist of bad news on the Jerry Springer show. I also noticed that my mouth-opening abilities were becoming more restricted with every passing hour. I sat my lazy ass down in front of my all-important makeup mirror and inspected my pie hole. Have you noticed that on either side of your mouth are two nearly imperceptible, pliable flaps that allow for maximum mobility? I discovered that, on this particular day and for many thereafter, those flaps were thick, white, hard, and painful. I am aware that this presents a really hot visual.
I stored this info in the back of my mind and proceeded about my life. Strangely, I woke up on Monday with a severe coffee burn on my tongue. The odd thing is that I had not yet had my obligatory 3 cups and was thus stymied by the mysterious development. My tongue was bright red and spotted and it burned tremendously in all tongue-related situations except if sticking out of my mouth. The problem is that I soon realized that I couldn’t walk around all day offending the general public by sticking my tongue out at it (otherwise, why not extend my middle finger for a greater effect?). I managed by altering my diet from all soft foods to all cold foods, mainly yogurt, ice cream, and chilled beverages, and by keeping the constant pain to myself. By this point, as you can imagine, I’ve grown so tired of adhering to specialized food restrictions of any kind that all I want to consume—inhale, actually—are the most forbidden, tabooed consumables: Burger King, Pizza Hut, and the greasiest of Chinese fare. Yet, I resist. By Wednesday I couldn’t take the pain any longer and called the clinic. Sweet Nurse Maxine told me that it was very common to experience thrush (THRUSH??? Isn’t that for, like, infants? Should I also check for diaper rash?) while undergoing chemotherapy.
Maxine reminded me that, since I strangely cannot tolerate the “D” of ABVD, I have been put on an ABVD/MOPP hybrid concoction. I’m a hybrid: how impossibly trendy and socially responsible am I? Instead of the “D,” (known as Dacarbazine or DTIC in the medical world), I’m now on mustard seed something-or-other, which I kept referring to it as mustard gas. (Many of you will recognize mustard gas as the chemical warfare compound capable of maiming its victims. It’s the details that always get me…) Anyway, Maxine regarded the mustard as the culprit and therefore suggested that I come to the clinic to pick up samples of a medication that will alleviate the pain. Of course I was grateful since A) I desperately needed to eat solid foods again and B) I’m not taking nearly enough prescription medications and was hoping for one more to round out the bunch. When I arrived at the clinic, Maxine gave me a huge hug and we both discussed the fact that I’m only supposed to be there once every two weeks for checkups and treatment, yet one illness or another tends to lure me back in during my “off weeks.” She said that I was dangerously close to unveiling their plan at ensuring I don’t stay away: Even though I have a Master’s degree in Healthcare Administration, I haven’t yet learned all of their trickery.
The samples they gave me were of a pack of blue plastic viles and a pack of clear plastic viles. Mixing one of each and then gargling was supposed to magically alleviate my symptoms and allow me to eat….yet nothing worked. Luckily, they also sent me home with a prescription for Nystatin as a back-up. I had it filled on Thursday and noticed a slight improvement on Friday. Note: The Rubbermaid bin where I keep my medicines (once fairly empty) now requires two bodybuilders to lift. It’s a full-time job and so I employ a couple of chiseled and tan men to do just that. Unfortunately, despite the fact that I require them to wear a strict uniform of birthday suit, I think they may be gay…
I drove to Houston on Saturday for a family weekend. I had wanted to see my 22 month old nephew for months, yet one or both of us always seemed to have acquired one illness or another, compelling me to prevent exposing each other to our respective nastiness—one which involved a staph infection on a very small, irresistible baby tushy. The weekend was so wholesome and therapeutic. My nephew still regarded me as his playmate and, despite my inability to effectively play Dora and Diego with him (ie: hang like monkeys from trees, etc.), he still loves me as his favorite Aunt Sarah (read: Favorite “AuntSarah”…he has several other aunts, though we won’t go into that). After arriving on Saturday night, my sister-in-law Sarah and I decided to have dinner and then visit my brother at work where he manages a brand new Barnes & Noble on Houston’s bourgeoning south side. While Sarah was appeasing my nephew in the children’s area, my brother and I chatted at the information desk, he in his khakis and tie and me in my…..jeans and bright, abstract-art scarf. As Sarah told me later, she was making small talk with one of his employees in the children’s area when, at one point, the girl informed her that she had to talk to Scott but he was busy helping the “Muslim lady.” Sarah reported this back to me rather quickly and, instead of ignoring the situation/refraining from saying anything that might embarrass her, I opted to bust out laughing. “I had no idea I was a Muslim….” (not that there’s anything wrong with that…). She responded by blushing profusely and apologizing. Even after declaring the situation over (much to the poor girl’s relief), it has since become a family joke. To this day I now wonder if everyone thinks I’m about to start praying to Mecca whenever I go out in public.
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| With nephew Brannon Christopher Gay in Houston. I’m not sure he approves of the scarf. |
On Sunday night, in a belated celebration of my mom’s birthday, my brother invited some of our close relatives over for a huge BBQ dinner. I suspect it was also a chance for them to observe for themselves that I was okay….walking and talking as usual. My family is awesome and I love them dearly…. Taryn and Andy, Leigh Anne and Barry, Ryan, Colin….. thank you for your support. After two nights in Houston, I drove back on Monday to prepare for my Wednesday treatment.
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