Make That a Double Martini Too

Though it’s the end of the day here, I have some energy to post an update. Maybe that energy is the result of snoozing through a part of the day in the hospital during the port implant and afterwards.

Yesterday, we met with a breast specialist at the Seattle Cancer Care Alliance, which is part of the Fred Hutchinson Cancer Research center, and is affiliated with the University of Washington.  We took along all the reports and images and spent quite a bit of time talking with her.  She concurs with the plan of the oncologist here as far as appropriate treatment:  standard course of chemotherapy (adriamycin, cyclophosphamide and taxol), followed by radiation.  She will connect with him to discuss the plan.

Though there is a variety of other treatments for different kinds of breast cancer, this is the standard for people in my situation.  And though there are clinical trials for other types/stages of breast cancer, currently there aren’t any that I could participate in.  The only details we need to pin down are when to start the chemotherapy (I still have the drain tube in since the surgery site is still draining, and that needs to heal since chemotherapy disrupts tissue healing), and the frequency and dose of treatment.  The usual approach is a larger dose every other week, but this doc is working with a group that gets a smaller dose once a week.  The idea is the more frequent, smaller doses are better tolerated and the drug levels remain more constant. The total amount of chemo ends up being the same.  We’ll discuss this with the local oncologist when we meet with him on Monday.

It was good to have the approach further discussed and clarified by the doc in Seattle. It helps us see the path.  I couldn’t help but express my frustration to her, though — that frustration coming from the fact that I’ve done everything I should have done to stay healthy, and except for last year, religiously followed the recommendation for yearly exams/mammograms.  Even the mammogram earlier this month didn’t show much of the problem, and when my husband saw the surgical pathology report, he said, “This must have been going on for a long time.”  So why didn’t the recommended tool catch it sooner?????  And with recent reports about mammograms and self-exams potentially not being so good at picking up problems in dense tissue like mine — why isn’t there a better way?  She understood my frustration and said, “Well, right now, this is the best we have.”

Other frustrations come from the fact that there are clinical trials for other types of this disease, and even for this particular type at different stages (before surgery is done, and after it’s metastasized), but there’s no clinical trials anywhere for people in my position — after surgery.  If we’d had any idea how extensive this was, we might have done chemotherapy first, then surgery.  But no one anticipated the spread, so we followed the usual path.

But I also have to say that I have tremendous appreciation and respect for the majority of people working in medical fields. (I’m also VERY grateful to have good health insurance.) During this frightening time, I’ve had excellent care and compassionate people helping me. (Of course it helps to have a spouse on the inside, but I don’t get the sense that their behavior would be vastly different for the average Jane.) These people are doing courageous things to take care of others every day.  But still, we have such a long way to go in solving so many health issues. It’s encouraging to see the improvements, even in chemo and radiation, but we’ve still got such a long, long way to go, with this and many other illnesses.

Anyway, for tonight I’m doing OK, even though I ‘m on a restricted diet (no sugars of any kind, including fruit, so I had to forego the beautiful strawberries we bought on the way home from the hospital). Tomorrow is the PET scan.  Let’s hope for the best.

And tomorrow night, I intend to have a martini and double dessert!

She’s Radioactive

After the dinner hour.  My daughter made the dinner tonight. She, my husband and my son ate at the regular table while I ate at the counter in the kitchen. Gotta keep 6 feet of distance from the kids till midnight, due to the isotopes from the bone scan today.  My son thought I might be glowing when I got home. Nope kid, I won’t be your nightlight tonight.

I actually dozed off during the scan. (Not been sleeping so well recently.) Much as I’d rather not be visiting medical offices, I have to say that the staff and docs so far have been wonderful.  Explaining things, making me as comfortable as possible. Courageous people helping folks like me.  Priceless.

The good news for today is that the bone scan is OK.  Tomorrow night we head up to Seattle so we can see someone at the Seattle Cancer Care Association on Wed. morning.  Second opinion. The word we got from the contact at the Mayo Clinic is that the treatment plan the local oncologist has laid out is the same as they would do at Mayo.  Unfortunately, the triple-negative type of breast cancer, which is what I have, is aggressive and obstinate, so no hormone therapy (tamoxifen, herceptin, etc.)  Just straight-on chemo and radiation.

Thursday brings another trip to the hospital — outpatient — to install a portal in my chest to be used for chemotherapy. They tell me it’s easier than injecting everything repeatedly into arm veins.  My arm veins have been poked up quite enough recently. On Friday I’m due for a PET scan, which checks for any suspicious activity in soft tissues.  That should be the last of the diagnostic tests.  After that, we lay the plan for chemo.

I’ve been told that, given the agents that will be used, I should expect to lose my hair.  I’m thinking the kids can do some artwork in permanent marker on my scalp. My husband thinks we can all shave our heads. Geez — the things you have to do to look for comic relief. Last week, when I was sitting in one of the waiting rooms, I heard a cell phone go off. The phone belonged to a man easily in his 60s.  The ring tone?  Tarzan’s yell.

Ahh –ah-ah-ah-ah—-Ah–ah-ah-ah!

Maybe I should take that yell as my motto.