- One friend wants me to look into one therapy that they use for blood and lymph cancers.
- Another wants me to call the a major clinic right now, because their new surgery/therapy combination is doing wonders for somebody they know.
- Another has me heading to the medical marijuana clinic. (That's actually probably the most helpful right now and I am grateful for recommendations there. I think the state of medical marijuana is deplorable; I will welcome it into the fold of science-based medicine soon and divorced from the hokum we see now.)
Folks, I know you love me. You want me to "beat" this cancer. You want me to be cured. I get that. Even though I have explained in detail what my situation really is, it went by you because you aren't the one living it. You don't know from solid vs blood tumors, you don't understand hormone status, Human Epidural Growth Receptor 2 status....everything that my doctor and I track in detail. I understand that I've written all of this in a way that's hard to absorb. So, you hear of people being cured and you want me to share the joy.
Here's the bad news: Cancer's a sneaky little bitch and it is different in all of us. All of these miracle cures and advances that you read about aren't necessarily going to apply to the people you know who have cancer.
- Some cancer makes solid, hard tumors, like mine. Others affect blood or lymph cells or make less palpable tumors. Treatments for each are wildly different.
- Stages of cancer determine whether you're getting surgery. I'm stage IV, metastatic. There's the same primary cancer in bones all over, in my skin and now God knows where else. That means no surgery because I'm basically riddled with cancer. What to do surgery on? Everything?
- The same goes for radiation, although I will consult my radiation oncologist just in case...but he's going to say "not unless you have pain." I don't have pain.
- I have the extra joy of managing the other primary cancers, especially my thyroid cancer, and there is preliminary evidence that the treatment for it may be making my uphill climb impossible.
What may be worse is how strident some folks get with me when I resist their wisdom. No, you can't pay for my cure. There isn't one. You can't help me find my miracle -- it's not out there. There's treatment, and I'm using my resources and a pretty keen ability to judge to decide my treatment plan. But the treatment plan will be rooted in the exhaustive research they've done to figure out what works for my particulars.
Let me be clear: the person in whom I invest the greatest trust in judgement is me. I get everything the doctors are talking about, sometimes right down to the molecular level. My data gathering is clear eyed and thorough. I will make the best decisions based on a narrowing set of choices. My doctors and I -- we have what we need. I will reach out to more just to be sure on my own. You really can't help me. You can't save me. Only I and the doctors can do that, if it's possible at all.
So back off.
And here's something I can't say enough: At Stage IV, I'm never going to beat this cancer. I will not be cured. I intend to tame it into a state we call NED: No Evidence of Disease. But I will never live another moment free of cancer treatment. I still may live for years, but I will always be Stage IV.
Sadly, the TDM-1 failed on nearly every count. Skin mets are worse, tumors are worse, my bones are worse. The doctor is signing me up for a clinical trial next. I will keep you updated.