After a highly stressful battle with Blue Cross—we won!!!!!!!!!!!! It seems almost anticlimactic and yes, we are weirdly “celebrating” the start of chemo.
First: Thursday we finally met with the highly lauded urologist. Got there a half hour early and he couldn’t see us until an hour and half past our appointment time. Did I mention that I have anxiety? That did not help! He entered the room and seemed sort of weird until we found out there was nothing he could do for me. My right kidney is dead and not coming back, like ever. On the cat scan it is clearly much smaller than the left kidney and black. My good kidney–he said it was awesome–is doing 90% of my renal function and my creatinine level is normal so the big guy is doing all the work and there is no possible repair that can revive the dead one. He didn’t want to remove it or drain it because the risks outweigh the benefits–i.e. infection and I am not having symptoms, like pain. So yes we are in mourning for the dead one but the good news is NO surgery needed. Let’s take our small victories where we can. Next up was a long talk with my oncologist, Dr. Steve. That seemed like enough for one day so off we went to the Seaport and Legal Seafood–OMG the lobster pizza with a fried egg is amazing, like me! We celebrated the arrival of chemo drugs and kissed the kidney goodbye.
I had my first dose Thursday afternoon, BOOM—-a little queasiness after two hours, not bad, I’ll take it! Woke up Friday feeling a lot warmer than usual, hello hot flashes, I thought you forgot about me. Went out to lunch with Kelsey and ran errands. Felt like I suddenly had the flu in TJ Maxx and had to sit down outside the dressing room to wait for her for a bit but it passed. I will definitely take it!!!!
Some of you are wondering why this is oral chemo? The simplest way to explain it–when you are first diagnosed with breast cancer the approach is poison, slash and burn in an effort to destroy all cancer and prevent a recurrence. It is a highly toxic process that brings you to the edge of death and hopes that you survive it. I had numerous surgeries, radiation, and a deadly chemo, intravenously, that destroyed every fast dividing cell, good and bad. Hence the baldness/hair loss, weight loss, anemia and multiple horrible side effects I won’t bother to catalogue. Hard enough to live through never mind bore you.
With recurrence, the strategy is different. It is now clear the original treatment did not eradicate the cancer–the bastards survived on a microscopic cell level, held in abeyance by a chemo drug I took daily for 10 years. This means I will always have cancer, kinda like a chronic condition. The goal is to slow it, shrink it and be stable. It means a life of continuous chemo drugs and clinical trials and experimentation because the cancer always wins and we have to try and out run it for as long as possible. That sounds grim, yup, I get that. This new drug, Pablocyclib, that only just got approved after being rushed through FDA approval is thought to be the first line of defense, along with Letrozole, in delaying cancer progression (that’s code for more tumors) in a gentler, less toxic manner. All chemo drugs are available to me, including the kind I had 12 years ago but for now, this is where we are at. My oncologist hopes to be in a nursing home in Florida before I get to dire straights—but no one knows if I will respond to this cocktail or any other–its a roll of the dice. Time will tell–I will be rescanned in 8-10 weeks, can hardly wait!
Now what I am I concerned about? I have to have weekly blood work to monitor my white blood cells since I am now entering immunosuppression. Must avoid sick people at all costs! Stay out of my bubble! Hot flashes and joint pain–which I am accustomed to already from the 10 years of Arimidex. Doctor does not think I will have hair loss based on the few patients he has that are taking this mix (and I mean few–4 or 5), but since I seem to be extra special I will probably be the bald one! A bunch of tedious side effects are listed–what? Lung blood clots! Yeah, that one bothers me. Moving on people.
My blood counts will be the determiner of whether we can travel out of the country or not in 2 weeks. Tim is optimistic but I am jaded after all!
Thank you so much for all the wonderful and imaginative gifts–I love totems–they make me feel safe even when I am really not. The cards and letters and e-mails–keep them coming. They mean everything to us. Everything. Emily Beals wrote to Tim to tell him that Bridget’s posse would always be there to watch out for and protect Bridget and Kelsey. As a mom, there is no greater gift than knowing someone is out there that cares for your children. They are my world after all (and Tim):)
Barbara, Tim, Kelsey and Bridget