We left the house at 6:45 this morning and returned at 2PM so needless to say, an afternoon nap was in order. Brian and I both got in a solid hour and a half of heavy sleep before he picked up the kids.
So, you may be waiting for the big "reveal" -- the "final answer" as to whether the cancer spread into my lymph nodes. Trust me, I understand because that's all that was on my mind when Dr. Bunnell entered my exam room this morning. But it was clear from the start of the conversation that he wasn't focused on the lymph nodes. He was focused on the chemo options. Looking back, this was a great lesson in communication because it's hard to have a conversation click when two parties are starting from two totally different vantage points. (An interesting parallel to how you may kindly be thinking, Why are we talking about "Make a Plates" before lymph nodes?)
Gradually, we got there. Dr. Bunnell confirmed that my cancer had not spread to my lymph nodes, and even better, the pathology showed no evidence of it in the vessels that surround my lymph nodes. Obviously this was great news.
But I feel like this space has become so much more than news on my own condition. I would hate it if my personal situation in any way frustrated someone out there who received different news, especially, "bad news." Even though that frustration would be totally understandable (I myself have felt it, had anticipated it this week, and will likely experience more of it along this journey), that frustration is still swimming in a sea of hope. Because what I have learned is that at Dana Farber, they always have a plan.
I am blessed that my plan has a solid start off the blocks. Still, HER2+ cancers involve a protein that can do some serious damage, so even though the tumor is gone, we're not done yet. (Dr. Bunnell drew a picture of a cell and explained lots of smart science stuff. As much as I loved my Biology classes (especially the one in high school when we got to make a cake in the shape of a cell -- yum!), I have a new aversion to talking about cells so I'm not going to recount any of that information here. But if you're interested, get yourself into the oncology field...kind and brilliant people are always welcome!)
With the 1.2 centimeter (grade II of III) tumor out of my body, we now need to make sure that no cancer cells slipped through undetected. That's what the chemo is for. Then we need to make sure that that HER2 protein does not work its devilish way on cells in my body, and the Herceptin will target and halt the protein's evil efforts.
So we talked for over an hour about my options. Truthfully, I didn't think I'd have options. I thought the doctor would come in and tell me what's next. But as Dr. Bunnell explained, because the pathology was so good, we have some choices to make.
Essentially, for me, there are three chemo regimens from which we can choose. (And I should note my understanding that each patient is treated as a unique individual so by no means do I mean this information to have blanket application to anyone else.) "Option 1" is the least aggressive, Option 3 the most aggressive, and Option 2 is, no surprise, a middle ground. We talked a lot about the different drugs involved in these chemo regimens as well as related clinical trials, past studies, and side effects. My initial reaction was that I wanted Option 3 -- aggressive as we can be, all the way, take no prisoners. But Dr. Bunnell explained that Option 3 has some drawbacks. First, it involves a drug that can cause heart damage (congestive heart failure) (the drug begins with "A," but I don't remember it nor do I want to investigate the precise name). Also, this regimen is 24 weeks long whereas the others are only 12 weeks. It's the most toxic, which means it kills cancer, but it would take quite a toll on my body too.
So we moved to Option 2. I think I'm most likely to end up at this one. This option involves 12 weeks of chemo, plus one year of Herceptin, plus five years of Tamoxifen. Heart damage is much less of an issue. The side effects are the ones you'd expect -- fatigue, hair loss, nausea, plus some really scary ones that Dr. Bunnell explained that he has to disclose, despite their remote nature (including that form of leukemia that Robin Roberts contracted after her cancer treatment, and for which today she received a bone marrow transplant).
As with most chemo regimens, on this one, my white blood cell count will plummet. To really low. Which means that any sort of infection -- a sore throat, a cough, a cold, a cut that doesn't heal well -- needs to be handled with extreme caution. Dr. Bunnell said that if I get a fever of 100.5 or above, I page him immediately, no matter what time of day. If it persists for more than an hour, he will send us to the emergency room and I will likely be admitted for a few days so they can give me the power to fight what my body will be ill-equipped to handle. Sounds like fun. (Also proves Dr. Bunnell's unwavering commitment to his patients!) So I stopped at CVS between appointments and got my flu shot. Dr. Bunnell said that everyone around me should also get their flu shot. I immediately felt guilty for the year I forget to get one. I never knew how much it could effect some other less fortunate person.
In the course of the conversation, I asked a question that brought with it a tough answer. I asked Dr. Bunnell, if we go with Option 1 or 2, and my cancer comes back, can we reserve Option 3? It doesn't work that way, he explained. If my cancer comes back, it's not curable. They can treat it, and prolong my life, but our shot at a cure is now. This was the hardest news to digest, but it's the truth, and I appreciate that he gave me that.
In the end, Dr. Bunnell seemed frustrated (in a calm and collected way) that he honestly didn't know which chemo regimen would be best. He admitted that he wish it were a simple answer, but that I was lucky to even be able to have this conversation. He seems to be tending towards Option 2, which is probably why I am too. But talk about impressive, here's how we left it....
On Tuesday afternoons, the oncologists and other team members meet at Dana Farber for their "Tumor Board" (not sure if that's the colloquial name in which case my caps may seem silly). Anyways, Dr. Bunnell wants to present my case to the Board/board next Tuesday and see what his colleagues have to say. So next Wednesday, we meet with him again to make the final decision on which route we'll choose. Given how quickly I have healed from my surgery, I will start chemo the week after that.
After this appointment, we met with Dr. Karen Fasciano, the incredible psychologist (and fellow Bowdoin grad) who saved me from my depths following the debacle with Dr. Funt. Brian loved her as much as I had. She helped us process and again assured us that she'll be here for us through this journey.
Then, after a quick catch-up and hug from a lovely former colleague who is now an attorney at Dana Farber, we headed over to the Faulkner to Dr. Chun's office. I got two of my four tubes removed, which means I can fit the remaining ones in my pocket and (hold your applause) ... wear a regular shirt! (No more of the same one shirt with the special pockets for the drains, as much as I appreciated that convenience.) I hope to get the remaining two tubes out on Friday which means I can shower on Saturday morning. I plan to shower 'til the hot water runs out...sorry Mother Earth, but conserving water is not on my agenda this weekend.
No doubt, today was a good day. Do I feel relieved and elated? Not really. No doubt, I feel blessed, as I only need to wait for our car in the valet room at Dana Farber to know how lucky I really am. But today left me with more of a mixed feeling. Because today was more real life. And in life, we need to assess our options, use our brains and our instincts, and make tough decisions. In life, there are no absolutes; we'll never know our future. As the quote from last night reminds us, we can celebrate change, but today reminds me that uncertainly is scary, too. Still, I believe in that quote, because today my Mom, Brian, and I got up and we did our best, as did so many others at Dana Farber and beyond. And that's also something to be celebrated, because at least for myself, it's something I feel I can control.