Tuesday, February 15, 2011

It Takes a Village

Once you get settled in the cancer routine (not that there is such a thing, it's just that you become a little inured to the cycle of ups and downs and surprises and twists), there is a little time to breathe and make sure you are doing all the right things to become disease free. We simply could not have gotten to where we are without the incredible support network we have.

One of the most important things is you have to advocate for yourself; in her case Meagan has to be a great patient. That means not only taking in input from the medical side, but talking with her friends and other professionals about their point of view - not just in their area of competence, but in areas in which they have some knowledge based on personal experience or other acquaintances experiences. As is typical in the traditional medical realm, while they are quite good about supporting you with a range of therapies to cure the disease, they provided no input or perspectives on other alternative things that she could do to support herself. I'm not talking crazy wacko alternative therapies, like the guy who has you eat pig pancreases and do coffee enemas. I'm talking natural therapies that healthy people can and should do. Like eating less meat of any kind (and if you do it's organic) to avoid the intake of toxins and hormones, eating way more vegetables (for their anti-cancer properties), increasing certain supplements, and adding spices and teas which have a long history of efficacy (turmeric, cinnamon, matcha tea). We came to these things through friends who shared these things with us in their approach to helping us - by giving us books, names of naturopaths and other health practitioners.

Of course we cross checked these things with our oncologist to make sure the right hand wasn't working against the left. It was through a friend's suggestion that she looked at adding Lupron to her Tamoxifen to make sure the hormones were shut down - and Kaplan concurred. The same friend cautioned her on the recommendation of the naturopath for increased calcium, and after reviewing it with Kaplan, he was quite clear about the maximum dosage. But the point is, Kaplan never talked about the need for some increase in calcium based on starting Lupron, or even adding Lupron. So for non-mainstream medically prescribed therapies (and some mainstream ones) - it's pretty clear you have to ask around, get educated, see the various professionals, and then cross check everything with the entire team.

It's too bad there isn't an integrated approach. Apparently at some cancer centers they are trying. It's not happening at our hospital. We've been trying for weeks to try to get in to see someone at Bastyr (who specializes in cancer and the link between conventional and alternative medicine). When we called, we were told on the voice message, "we are pretty busy, we'll get back to you in a couple weeks". Is that a sign of demand, or lack of competent professionals? It's also limiting when you want to have a professional you can establish a trusted relationship with on an ongoing basis - many are not set up that way - one of the naturopaths we saw has a boutique firm and pretty much sees you one time, for an exorbitant fee.

Maybe much of what we are getting out of the professionals we do see could be pulled right from books like the Anti-Cancer Diet. But books are pretty general, even ones like the one mentioned, which is quite good and does have suggestions by particular disease. But each person is different, their body chemistry is different, their "flavor" or disease is different (as we've discovered with melanoma - which has many permutations based on particular proteins [HLA-2] and genes [B-RAF]).

So the lesson for me is you can't be passive. You need to be assertive. Seek the counsel of others. Bring up stuff to your oncologist. Advocate for yourself based on what your body is telling you. We would never have been on this regimen of Lupron and Tamoxifen if Meagan hadn't noticed the connection between tumor emergence and growth and her monthly cycle. In the end it might turn out to be correlation, not causation. But it is worth the shot given this disease and how it can progress, and we are fortunate that it is not spreading fast so she can try some things that might not be ordinary, before maybe moving on to more traditional therapy. I'm really proud of her for the role she has taken in this whole process, and for her network of friends who are supporting her beyond the emotional piece - which is obviously huge in and of itself.

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