Ring Around the Rosies: A Plague Song from the Middle Ages

I’m on a post-steroid fueled writing episode. Some good news and bad. Chemo 35 yesterday, and, yes, I am going for the record although Dan knows a patient who got 80 something chemos with his stage 4 pancreatic cancer.

Before chemo infusion, I get blood work done and usually see my oncologist, Dr. Patel. I asked her if my androgen marker came back positive because they are doing clinical trials at MD Anderson with androgen positive tumors. “No,” she said. “You have less than 1% of androgen marker.” I also asked Dr. Patel about the research facility at Sarah Canon in Nashville. Another oncologist, Dr. Hesamm Gharavi, had told me it was the leader of all clinical trials and that I should contact Dr. Denise Yardley, who is a top researcher, to see if I have they have some trial for Triple Negative. Dr Patel reminded me unless I have active cancer they may not put me in a clinical trial because my margins were clear after my mastectomy. Dr. Yardley is supposed to call me back. We also discussed maybe meeting with Provision doc for proton therapy to target a close margin area. Proton therapy is not usually good for breast cancer because it’s hard on the skin and most doctors don’t recommend as part of treatment. But in my case, since I can’t have reconstruction anyway, I will talk to them. At times, people mistakenly say doctors in this area don’t refer to proton therapy because they want to keep their business to themselves. Not true. My husband is credentialed to work there and just wants to do the best for his patients. Plus proton therapy sometimes isn’t paid for by insurance.

By the time I had left Patel’s office, I was feeling pretty positive and proactive.

Chemo was fine despite the red devil infusion. They are giving me a new anti-nausea drug Emend which should help. My daughter Elizabeth came to visit which always delights me. She, like all my children, are the lights of my life. Afterwards Elizabeth, husband Daniel and baby Hugo went out to eat at Pokeworks. My favorite kind of food.

In the late afternoon, Dan and I decided to spend the night at the lake house despite First Friday activities downtown Knoxville. I was having a hard time keeping my eyes open because I hadn’t slept well the night before, so I got to lake house and crashed.

When Dan got home, I was already awake and we went swimming in the our warm pool (86!). I had on a two piece bathing suit and asked him about a red spot below my mastectomy scars. I had noticed it a day or two earlier, but without my glasses I couldn’t tell what it was—a wound from the drains or what. He scrutinized it and said, "S—t. it looks bad. Just like the spots before.” If you know my husband, you know he never reacts strongly to much. When my water broke a month early with my first child, we were at my friends’ house playing cards, and I told him we had to go to the hospital. He backed down their curvy driveway and got stuck. He said, “oh. we’re in a ditch” just like that. We’ve been married for 41 years as of July 1 so I know all his expressions. I texted Dr. Patel and said “Sorry to bother you so late but here is a picture of a spot on my stomach.” She immediately called me back and said she had called Dr. Midis, my surgical oncologist. July 4th week and these amazing doctors are working with me to be seen as soon as possible! Midis said he would work me in on Monday to look at it and to maybe biopsy. I’m nervous. But so grateful again that we went swimming instead of first Friday and I had on a two-piece, which I normally don’t wear, and that the doctors are so quick to get back.

The rest of our Friday night was spent swimming, Skyping with my oldest son and his family, and watching a double feature from redbox, Cold Pursuit and The Aftermath. I may or may not have had a glass or two of wine. But the steroids, slight panic, and a nap enabled me to stay up til 12—unheard of for me. Then when we went to bed I told Dan I needed to read for a while that based on experience I wouldn’t be able to fall asleep for another hour. Dan was such a good sport and stayed up with me even to watch the movies though he had gotten up at 6 to drive to Crossville where Thompson has a cancer facility.

I didn’t take my advice from my last blog—to check out anything that looks weird and didn’t show it to Dr. Patel during our appt. That’s on me. I’ll keep you posted about what happens.

Now I’m beginning to think my cancer is called triple negative because it’s popped up three times. I hope I won’t be singing “ashes, ashes, we all fall down” anytime soon. (By the way my husband does a great job of describing the different kinds of breast cancer on his portion of the blog called “A Second Opinion“).