First, I need to thank some people in my life for being really incredible to this lab rat last week: Deb, who provided a place to stay and food to me and my parents when we were required to stay a full week in Scottsdale for Mayo appointments; my parents, who chauffeured me around Scottsdale from Tucson; and my monkey, who came to visit me while I was away from him for the first time since…well, we started dating. Milo and I have always spent some time together daily, even if it was just before bed, since we became a true couple. It was exceedingly difficult to be away from him for days at a time and I hope that never happens again.
The week at Mayo was trying in more ways than being away from home. There were long days of fasting for PET scans and CT scans, which I’ve already admitted to hating violently. Really, how good can it be to send a drug through my system that sets my body on fire? I hate CT contrast with a passion and not being to eat when you already have stomach and weight issues is just cruel. Two days with afternoon fasting-necessary scans was just a lot and I know I cried often because of the stress. Most of the week wasn’t so bad: blood work, doctor’s appointments and two treatments (Tuesday and Friday) with the drug, which is dissolved into ten milliliters of water in a syringe and pushed through my port-a-cath over five minutes. Before each treatment they draw blood and get a urine sample. Sometimes they do blood work after the treatment too. On the first treatment day, they did several labs before my afternoon PET scan and thankfully they can draw them all from my port so I don’t have to be stuck too often. I’d like to have some veins left when all is said and done.
Overall, the lab rat experience is weird. I don’t really see a doctor or lab results as often as I did with Dr. Brooks. Mostly, I see a chemo nurse, who gives me the drug, and the nurse researcher, who asks about my symptoms. I actually haven’t had any of the expected side effects from the drug; other patients were reporting arthritic pains. I haven’t had that at all, but I have been nauseous and vomiting again; we’ve decided that’s the cancer and not the drug, however, since it started before the trial. I am down in weight, lower than I was last year when I was first diagnosed and dropped weight and even lower than when I was dieting and exercising. It concerns me because I have been trying to eat and calorie load to keep some weight on. Dr. Brook’s words of “stable disease means I don’t watch you waste away” haunts me every time the numbers drop on the scale.
Speaking of the good doctor, he actually called to check on me Friday. He wanted me to know he prays daily for my miracle and wants me to keep in touch with him no matter what I need. It means a lot that a doctor went out of his way to call, to insist I keep texting him, to pray for me and all that after he handed my care over to someone else because he ran out of options. It says a lot about his character and I couldn’t have asked for a better oncologist through all this.
One last thank you to Deb’s friend, Jocelyn, who was kind enough to do some reflexology work on me. Jocelyn is a survivor too and talking to her during my treatment was probably the best part of my week. She really seemed to understand me in a way no one else has and I felt bonded to her instantly. One thing she said resonated with me most and helped me feel much clearer: “Remember, whether you live or die, you are going to be okay.” It’s true. I don’t really deal with the aftermath if I don’t get my miracle, though I will so that’s moot (power of positive thinking!) Surviving may mean dealing with infertility (good, I didn’t want to pass on cancer genes anyway!) and always carrying around the black cloud of cancer (because I will be tested for it often for the rest of my life), but I survived. So I’m still here to go about my life knowing I made it. I will be okay.
I will also continue to currently be a lab rat. Twice a week for the foreseeable future.