Thank you all again so very much for the incredible tidal wave of support over these last two weeks of uncertainty while we awaited more information about my lymphoma. I am extremely glad to tell you that last night, we received about the best news that a cancer patient could get.
My hematologist oncologist (the heme-onc), whom I have not even met yet (which shows what a great doctor he is going to be) called me last night at about 6:00 to deliver the results of my surgical biopsy and PET-CT scan (which only happened yesterday at noon). He said that the diagnosis is indeed Hodgkin’s lymphoma (about the only bad news in the call, really) of the nodular-sclerosing subtype (the most common subtype of HL). We caught it early and my chances of a total cure are greater than 90%. According to the CT alone, the only enlarged lymph nodes or tumors anywhere in my body are these in my neck, which would put me at Stage I. By PET scan, they might call it Stage II, because the PET scan (which basically uses a radioactive glucose to highlight cancerous cells in the body) showed some activity in my chest also. But those nodes are totally normal in size, so if they are actually cancerous, it would indicate only the very beginnings of any spread to that area. So the doctor said my prognosis is in line with Stage I Hodgkin’s with low risk (meaning I have no adverse risk factors that might indicate a poor prognosis despite early staging). So I am Stage IA (the “A” meaning that I have no systemic symptoms such as fever, night sweats, or certain blood count indicators).
Treatment for Hodgkin’s is pretty standard, and, especially with early-stage disease, very straightforward. The normal course for my stage of disease involves 2-4 cycles of chemotherapy (a regimen called ABVD; one “cycle” is four weeks long and includes two doses given at two-week intervals, so basically I’m looking at a chemo treatment every other week for 8-16 weeks), usually followed by radiation to the involved areas (for me, that would mean my neck and possibly my chest). However, radiation, especially to the chest, is associated with significantly higher risk of later cancers (particularly lung and breast cancers) for Hodgkin’s patients who survive longer than 15 years. For people like me who are diagnosed at a relatively young age, this is a pretty significant risk to consider, so I am considering a clinical trial that would replace the supplemental radiation with a promising new treatment that has shown remarkable results with relapsed Hodgkin’s and is now being tried in combination with front-line treatments. More details about that once we’ve done more investigation.
The next steps are to meet in person with my heme-onc on Monday to discuss further plans. I will also have a bone marrow biopsy that day (yikes—although I’m told that they are not nearly as bad as everyone thinks they are) just to rule out any bone marrow involvement, but given that my blood counts are totally normal, this is extremely unlikely. On Tuesday, they will conduct some baseline tests on my heart and lung function, because some of the drugs in the ABVD regimen can damage those organs. We’ll also meet with the fertility preservation specialists at Lineberger that day to discuss the relative risks of the ABVD treatment (the risk of infertility with this regimen appears to be very small, but we want to make sure we understand all of the risks and all of our options).
I’m not sure when we’ll plan to begin chemotherapy. I’m still going to see if it’s possible for me to complete my race on April 29 and start right afterward, but if there’s any concern at all about delaying treatment, of course I’ll start whenever I’m told to start. The doctor told me that starting my new job this fall shouldn’t be a problem at all. Again, totally amazing. I’ll likely be bald, but who cares?
Another win for me, I think. Big time. And now that I know for sure that this thing is very beatable, I’m ready to beat it. In fact, I’m already beating it.
Jessica and I were talking the other day about what it’s like to go through something like this so soon after a tragic loss (in 2008, her then-three-year-old son was diagnosed with Type I diabetes only ten months after her mother died suddenly from Rocky Mountain spotted fever). We both agreed that at least with a disease like this, there’s something we can do about it, a way to fight, as opposed to the utter lack of control we had over anything that happened to her mom and to Hudson.
I’ve been pretty surprised at how I’ve managed not to completely fall apart in the wake of this diagnosis. I mean, really, what are the odds of losing a parent AND a child AND being diagnosed with cancer all by age 36? It’s kind of a lot to take, don’t you think? I have certainly had a few dark moments, including the few second right after the pathologist first read the results of the needle biopsy, during which I sobbed and kept shaking my head in total disbelief, and two nights ago, before the PET scan, when I had read some discouraging stories about later-stage and relapsed Hodgkin’s and began to think too hard about the worst-case scenario of leaving my sweet Ed and Jackson far too soon. And I certainly dread spending the rest of my life getting intermittently screened and waiting for each new result, worrying whether the cancer may have come back.
But in general, and especially now that I know that the odds really are in my favor, all I keep thinking is that I have already survived the worst possible thing that could happen to me. The only thing worse that could happen now would be to lose Ed or Jackson, so in some ways, this cancer thing seems almost like a piece of cake. I know that may sound ridiculous, but that’s how I feel. Of course, I know that treatment is going to be unimaginably awful, but really, could it EVER be worse than the many dark months I spent after Hudson died? Never. It could never be that bad. And not only that, with cancer treatment, I can actually look forward to it being over at a defined point in time, whereas with my grief, all I could ever hope for was that at some unknown time in the future, it might start to feel marginally better. No, cancer will be easy compared to that.
And above all, Hudson’s death has instilled in me a ferocious determination to beat the hell out of this cancer. Disease took her life from her decades and decades too soon. I resolved when she died that I had to live well enough and big enough for the both of us. I’ll be damned if I’m going to let another disease rob her, and our family, again.
So to recap, the score is:
With the help of all of you, the members of what I am now calling my “Screw Cancer Posse,” I am looking forward to a total shutout.