cancer – day 38

Around and around I go. I’m almost there, but nobody knows.

I talked for over an hour today with this woman, Carol, who’s basically a cancer case worker. I think she told me she’s an “Oncology Patient Navigator,” how’s that for a job title? She didn’t really have any information I haven’t already read in my own research in terms of what to expect (sometimes on the common questions it sounded like she was reading to me from the National Cancer Institute website, which she’s probably read a million times), but it was good to be able to speak with someone who’s worked with hundreds of breast cancer patients and to ask her opinion on the things I’m thinking about right now, which go well beyond the common questions about side effects or treatment duration or whatever. Specifically, of course, I’m still thinking about where to do my chemo.

Like all the medical professionals I’ve discussed the situation with, Carol did not provide a direct answer to the fundamental question, but rather gave comments on the two possibilities I’m considering: staying in Sacramento at Mark’s, or staying in Yankton at my parents’ place. She really clarified some of the medical care points that I was unclear of, in terms of implications of leaving Sac for six months for chemo and coming back.

All of my doctors have expressed concern at me not being where I can go to them for the necessary checkups and care throughout chemo, particularly my cardiologist. The point Carol made that many of my doctors have alluded to but not said outright is about working with multiple medical oncologists. I was only so-so on the medical oncologist, Soe, that I met out in Cameron Park last week, and I have much higher hopes for the new one I found actually in Sacramento, Lombardi, because of what I’ve read about him (he’s actually specifically a breast cancer specialist, whereas the other guy is a general medical oncologist) and what I’ve read about the Sutter Cancer Center and how they’re active in some very current clinical trials and treatment options and oncology conferences, and in general I’ve felt better, more secure medically, about the procedures that have been done down in Sac where they treat a ridiculously large number of breast cancer patients daily. They really know what they’re doing. And they know what to do with a young woman with breast cancer. I know my parents have heard rave reviews about the medical oncologist in Yankton, and she’s supposed to be young and up to date and have great bedside manner, but still, how many young women in Yankton, South Dakota have breast cancer in a year? More than in Volcanoville of course, but still. Any? I’m sure there are plenty of cancer patients in Yankton, and chances are 80% of them are over 60 years old with a lot of cancers other than breast cancer, but let’s face it, it’s a very small town in the Great Plains. How progressive and specialized to my situation can the oncologist there be?

Carol’s real point though, came up twice in different parts of our conversation. When it really drove home for me was when she was preparing me to understand that while it’s important to focus on one thing at a time, focus on the next thing and not worry too much about what’s far ahead on the treatment path (I had started asking her questions about side effects of the drugs after chemo and how those drugs and chemo drugs damage the ovaries and cause menopause). She also wanted to make sure I understood that this is not going to be over when chemo’s over. It won’t even be over when radiation is over, or after my hair’s grown back. She said I need to get used to the fact that my medical providers are going to be very active in my life for the next year, and that they will still be working closely with me for the next two years after that, and still checking me frequently through the five-year mark (which is a huge milestone to make without a cancer recurrence), and still then, for as long as I live here, I will have this medical team. As I understand from Dr. Soe, my pathology showed them that my cancer is one that will recur. It’s not a question of if, it’s a question of when and where. We can do a lot with chemo and all this stuff to make it a long time before that recurrence occurs, but it will happen some day, maybe 20+ years from now. So I need to be very comfortable with my medical team, especially with my oncologist, because they will be with me for a very, very long time.

And when I think about all that, it doesn’t seem wise to have another oncologist involved for the chemo and then someone else do the rest. What if the two have different opinions on what drugs should be in my chemo? What if they disagree about how many rounds of chemo I need? What if something happens part-way through and we need to involve my cardiologist? What if it turns out I need more chemo rounds after the first six months, or later, after a period of time passes? Would I go back to South Dakota every time I needed chemo, to see this oncologist there? So now, besides the fact that I feel better about my medical care staying with my cancer doctors here and my cardiologist here, I also think it’s important to do my chemo with the medical oncologist who is going to continue to care for me after the first six months’ chemo sessions are over. And I think that oncologist should be Lombardi. This is precisely his specialty, he has a great reputation, and he’s working with more breast cancer patients than I really want to know about at Sutter.

So, to what will surely be my parents’ great dismay, I am completely convinced now that, medically, the best option for my chemo treatment is to do it in Sacramento. But I still have some other issues to resolve to make that happen. Logistical things like what to do with Mizzou and Seoul, and what creature comforts I may need in Mark’s house. And then there’s this underlying concern, not of Mark’s capabilities as a caretaker, but rather of the strength of our still-fairly-new relationship. Just like the chemo-care situation can put huge stresses on the relationship, any problems in the relationship could create stress that I don’t know how I could handle gracefully during chemo. I mean, come on, breakups are usually messy to some degree anyway, making it hard to end a relationship gracefully anyway, but can you imagine going through that emotional stuff while your body’s being beaten up by chemotherapy and you’re basically trapped in the guy’s house by your poor health while he’s going out socially hoping to meet the next ms. right? That’s the extreme, but hey, I have a tendency to consider all possibilities before making a decision, even the unlikely possibilities like potentially having some huge relationship issue that interferes with Mark taking care of chemo-girl. When I was still fretting about it IM-ing tonight, Mark bluntly told me to “stop worrying about that.” If he’s so completely not concerned about that, then he must have some reasonable faith that whatever happens we’ll work through it so my chemo care isn’t compromised.

And at the end of the day, upset as they’re going to be to find out I’ve decided to stay in Sacramento for chemo, my parents would take me back home in a heartbeat, or probably even temporarily move here to take care of me, if things really went so terribly wrong with this plan. It’s much easier to take on some risk of falling off the highwire walk of life when your net is as strong as my parents.