Getting Home

The next morning, Sunday, we all had a great big family breakfast, courtesy of Chris, who seemed to be the designated cook, despite having several other very accomplished cooks in the family. We all talked some about the cancer and I shared my idea of doing a blog about it. Once a journalist, always a journalist, I guess. Jayson set the blog up for me, since he is an experienced blogger (www.crestedbutteguides.com). Originally, I thought I'd write it in every day. That obviously hasn't happened, as I am still playing catch-up a month later. I realize that it is more like a diary for me, than the usual blog. Put it down to my age, I guess.
In talking about the cancer, Chris made an impassioned plea for alternative therapies, perhaps in Mexico, arguing that the aggressive high-tech American way of treating cancer isn't always the most effective. But I think it was too much, too soon, for some of his siblings, who were upset to hear his lack of faith in American medicine, particularly from someone who works in the field.
Later in the day, after Mara, Rob & Els headed for the airport, Jay and I drove out to the ranch to collect some things left behind. It was wonderful to have the time alone with Jayson. His imagery from his mountain climbing experience was particularly helpful -- not looking at the whole mountain, but just taking it one pitch at a time. I instinctively was already doing that, but it was great to have it spelled out. Jay's fierce determination to get to the summit is inspiring. He has also been extremely helpful to his siblings through all this, not the usual role for Jayson, who in the past had only tenuous connections with his brothers and sisters, feeling they led lives very different from his. Now, his inner strength is a source of comfort to all in the family.
Early Monday morning, Tony & I packed up the car and headed to the Memphis Airport to drop Jay for his flight, and then for our long drive home. We pushed hard Monday, since I was feeling okay, and got to around Hagerstown. This time, Tony did all the driving. Normally, we trade off at every tankful, since we both like to drive, but I wasn't up to it, and I think Tony welcomed the distraction. The drive home didn't have the joy waiting at the end of the trip that the drive down did. Only tests and treatment now awaited.
I was surprised that I wasn't at all nervous about any of the impending tests. While I have a horror of surgery (being cracked open, intubation), that was not in the cards, so the tests -- needle biopsy and all -- didn't worry me a bit. They seemed easy, and in fact, they did go very smoothly. But I am getting ahead of myself.
Day 2 of the trip home, Tuesday, did not go so well. I was in a lot of discomfort. Tony had bought a pillow and foam to create a bed across the back seat and that's where I spent most of Tuesday's ride, popping pain pills that didn't really work. By the time we got home in early afternoon, I was pretty miserable. We called the local rescue squad, because I just couldn't face getting back in the car for the hour's drive to St. Peter's Hospital, and I hoped the squad EMT could give me something for the pain. He couldn't, but I was still more comfortable in the rig than in the car. So back to the hospital I went, for the second Tuesday in a row. It was hard to imagine it was only one week earlier that we had got the stunningly shocking diagnosis.
This time we had to go to the ER at St. Peter's, but the treatment was fine. They gave me something for the pain almost immediately, then something for the nausea caused by the pain med. Chris & Gwen came up after work, so there we all were again -- in a hospital ER.
By evening I was transferred to a room, a private room, courtesy of Chris's boss, who also works at St. Peter's. What a luxury.
The next day Tony worked the phone to the oncologist's office, arranging all the tests we had put off. By Thursday afternoon, I had had the needle biopsy of the lung (very easy, done with a local anesthetic) and the brain MRI, and we were on our way home again, pain free.
The following Monday we met with the oncologist to get the biopsy results. We already had the brain MRI results -- clean, no metastasis. Whew! I had worried about that one, knowing how brain tumors can dramatically alter the personality. I at least want to stay me throughout this.
Unfortunately, when we saw Dr. Sunkin Monday, he didn't have the biopsy results, so he talked about the treatment based on his assumption of what the results would show. In fact, it ended up only slightly differently: non-small cell large cell carcinoma, the least common of the several lung cancers. The treatment he laid out is an every-three-week chemo of carboplatinum and Taxotere. Normally, he'd add Avastin but can't in my case because of the risk of the adrenal tumor bleeding. He also gives several heavy duty anti-nausea drugs before, during and immediately after chemo as well as a shot of Neulasta the day after chemo, to boost the immune system. So the drill is blood work the day before, chemo on Day 1 (takes about 2 1/2 to 3 hours), return on Day 2 for IV fluids and Neulasta (takes about 2 hours), blood work on Day 7, return on Day 8 to see the P.A. and go over the blood work and how I am doing. Repeat every three weeks.
Sunkin said we would do that for three treatments, then do another CT scan to see if the tumors are responding. If they are, then I'll get three or, at most, four more treatments. It is not open-ended. We didn't discuss what the options are if the treatment isn't working. I just assume it will work.
The one upsetting part of the visit with Sunkin was when I asked about the prognosis. He never talked about a 'cure', only (temporary) remission. He was very straightforward, which I appreciated, and just answered the questions asked. Prognosis, he said, is 10 to 18 months.
So now I work hard to put that information aside, to remind myself it is only a statistic and I am not a statistic. The fact that I am otherwise perfectly healthy (not on any meds for anything) should help recovery pretty dramatically, I am hoping.
I also asked him about work, since I work half-time as executive director of Columbia County Bounty, which links local farmers with local chefs as well as consumers who are committed to eating locally grown foods. I had volunteered with the organization for several years and then was hired as the first paid exec. The work was important to me, but in the new scheme of things, I was re-evaluating my priorities. Sunkin suggested I might be best off stepping down, since I'd have limited energy. I had already alerted my board to the news of my diagnosis, so they could begin thinking about what to do also.
Later in the week I went back to St. Peter's outpatient and had a port put in my chest, for the chemo. It too was a very simple procedure, and again, I wasn't nervous, although I am a little freaked by this bumpy thing now on my chest. (I'll never wear again the dress I wore to the wedding, not with this ugly port bump.) I also had a PET scan, which was clean -- no tumors anywhere else -- just the two we already knew about.
Whether it was all the tests, or just the enormity of it all, it knocked me out. I spent most of the week before the chemo hanging out on my bed -- reading, listening to NPR news shows, resting. I wasn't in pain, didn't take any pain meds. A heating pad on my back works very nicely to dissipate any discomfort.
We had to fend off loads of offers of food. As it was, one friend brought her delicious pot roast, carrots & potatoes over. Another brought over veggie lasagna for Tony, a dessert and delicious jam, while a third friend left on the doorstep chicken soup and a thick, thick corn chowder as well as two kinds of cookies and an apple crisp, trying to fatten me up. Our freezer is still full, weeks later.