I mentioned that yesterday I had lots of energy (not quite the steroid-boost energy, but normal energy...which is rare enough these days) and one of the things I did was write an article for Area 9 magazine (for you locals--it used to be 951 magazine; and no, that's not Seamus on the cover...but it should have been!). The article is a first person account of my health care experience locally and why I left town for my care. Seems I had a lot to say--I'm having trouble with the 2,500 word limit. It got me thinking a lot about what's normal and what isn't in health care. And how much of a patient's care depends on where one lives or how far one is willing to drive. The city I live in has over 250,000 residents. It's not LA, but it's not a small town. I was truly surprised to learn, the proverbial hard way, that the standard of care here doesn't seem to be very high. Surprised, then pissed, and now just saddened, okay, but still a little pissed too.
This Thursday I go for chemo round 3. Thinking about how rough this last round was--from the reactions during chemo, to the hives and pretty much non-stop indigestion (how much baking soda and water can one drink??), I have to admit I'm more nervous about this next one than I was about the first one. And it strikes me as quite odd that I've only ever seen "my" oncologist once. Ever. We had an initial consultation (where she confirmed what Dr. Glaspy at UCLA had told me, dropped a few names, talked a million miles a minute and left). But all pre-treatment exams, treatments, follow-ups, shots and phone calls have been with nurses and the nurse practitioner. No doctor. Kinda feels like no one is really following or "in charge" of my case. I had heard that you don't really see the doctor--it's all the nurses who care for you in chemotherapy. Seems odd doesn't it? Something as serious and grotesque and potentially life-threatening as chemotherapy (not to mention that it's treatment for what could be a fatal disease) and the doctor is invisible? I don't know. I'm thinking that's not right. So last week I called the oncologists office and asked if I'd be seeing the doctor at my next visit. The answer was that I can if I'd like. Huh? Okay, I'd like. So that's noted in my file now, but she did tell me to be sure to remind them when I arrive. This makes me think the doctor is going to poke her head in and say "hi" in the middle of my pre-treatment exam with the nurse practitioner.
I'm gearing up to get some reassurance from my doctor. Which, again, doesn't seem right. But I have questions! Like, you know, "Doctor have you looked at my file? Are my reactions normal? Is there anything we can do about them? Were they side effects or allergies? If they're allergies, isn't it dangerous to give me that chemo again? And if it isn't allergies, then since the first chemo went just fine with just the extra dosage of steroids, why do I now have to do the extra dosage of steroids plus all the Benadryl, Claritin and other stuff?" Bascially, I think I want to scream "Help!" Or, more to the point, "Do you even care?" Chris said he's wondering if she'll remember his name. I had to laugh. I don't think she knows MY name.
So here's where I'm thinking perhaps some of you readers can help both with what I'm writing about in the article and just for my own peace of mind with what I'm experiencing. Or hey, maybe you'll inspire me to demand better care. Or to relax about it. I know that some of you have been on this breast cancer "journey" yourselves and some of you have been through it with close friends or family members. So maybe you'd be willing to share your observations of what was "normal." You can do so anonymously in the comments or email me (rhynetj at aol.com; Only you have to use the proper "at" symbol--I just did that so I don't get a ton of spam from automated systems) if your more comfortable with that.
Specifically, I'd be interested to know the following:
1) How long did you wait between the mammogram that showed something suspicous and the biopsy?
2) Did you feel like the time frame for treatment (start to finish) was reasonable? If not, why not?
3) Did you feel like someone was "in charge" of your care all the way through? If so, who was it? Your primary care doctor? the Oncologist? The surgeon? The Radiologist?
4) Did you see your oncologist regularly during chemo?
5) where do you live and where did you go for your care?
6) Where did you get most of your useful information? (Friends? Books? Primary Care physician? Surgeon? Oncologist? The web?)
I don't mean this to be a test. You aren't required to answer all of those questions. But if you'd be so kind as to share your experiences in regards to even one of these, I'd appreciate it.
On a closing note, in an exchange of emails this weekend with the good and great Dr. Karam (he from whom I still get all my information and medical support) he used the "journey" term without putting it in quotes (to highlight it's ridiculousness; he reads the blog, he should know better!). I, of course, took him to task (not too severely, don't you worry; it's all in jest), and he apologized saying he understood this was not like a trip to the Cotes du Rhone, it was more like Homer's Odyssey. And that's it! That is a much more apt description of this. It's my breast cancer odyssey! Doesn't that look like a white blood cell crash in that picture? And Chris is super excited about playing the role of Penelope. Seamus is less excited about being Telemachus, he prefers staying in bed.