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.

On the Road to Mississippi

The car trip Thursday afternoon/evening was a real present. It gave us the space to talk, to begin to get our arms around how totally changed our world had suddenly become. I think both Tony & I had always assumed I would outlive him. He had the "comfort" of knowing he would go first. After all, my mother at 90 still lives on her own. Her mother simply died of old age in her own bed at 95. No one in my family had ever had cancer. I expected another 25 to 30 years. Based on statistics, I had assumed I would be a widow someday, although we always talked about going out like Bucky Fuller & his wife, who died within days of one another in their 80s, even though one was apparently healthy. Now all that was out the window.
We talked about how to use the time, if it was going to be limited. We talked about some of the day trips we'd like to take close to home, that we somehow never get to do. Did it make sense to shed all our outside commitments? Were they just a needless distraction now?
I cried a little, at the thought of not getting to Mara's wedding some day, not getting to see the grandchildren Hamilton & Annette will produce, not being around to see Jayson finally settle down having finally found the love of his life. Tony came as close to crying as I'd ever seen.
We didn't go far Thursday, feeling we didn't want to push it. We pulled off the road in Hagerstown, MD, for dinner and the night. We expected to drive for most of Friday and then spend the night within 4 hours of Oxford, MS, so we could be there by noon Saturday. The wedding was at 5:00.
We spent part of the afternoon writing a message for Ellie to deliver on our behalf when speeches were given at Friday's rehearsal dinner. It was our usual Mom/Dad. We each wrote something, then melded the two together. I got teary at various points as we wrote. It took Tony 30 minutes (I timed him) to type it out on his I-Phone to send to Ellie in time for Rob to print it out before he left work that night at The Wall Street Journal, since they don't have a working printer at home. He got it in time, then inadvertently they left it on their dining table when they headed to the airport, so Els ended up reading it off her Berry.
Friday's drive through Virginia was rainy. By afternoon, I asked to drive, not telling Tony that the pain was beginning to come back. I thought driving would take my mind it off, that it might go away if I was focused on something else. But after two hours, I turned the wheel back to him and confessed. I had Oxycodone, which I started to take, even though I dislike taking pills. And Tony wanted to know what our emergency care options might be. We decided it probably make sense to keep going, to get as close to Memphis as we could.
I feared that Tennessee was one big medical wasteland, full of community hospitals like Hudson, not equipped to deal with a serious emergency. I pulled out the road atlas we carry, since we are inveterate road trippers, and picked out major medical centers along our route -- in Knoxville, Nashville and Memphis. Tony remembered that Apple's Steve Jobs had had a liver transplant in Memphis, so I googled Jobs on my little Berry and found which Memphis hospital he had gone to. Then I matched it with a nearby motel, so we just kept driving, a little nervous.
Tony said that no matter what happened, he was glad we were making the trip, that no matter how it turned out, we had made the right decision. I felt the same way. It was way too important not to try our all to get to the wedding, and to see all five kids.
At one point in late afternoon, the cell phone rang and it was my primary care doc, the one who had said go the ER when we had called at 6:30 a.m. It was our first conversation with him. He had seen the Hudson hospital medical records, so he knew what was up. But he was quite reassuring, in terms of taking the pain meds and just keep going. It was comforting to have a medical person second what we were doing.
I was able to sleep fairly well Friday night and we got on the road early, arriving at the house in Oxford around 9:30 a.m. There was Jayson, barefoot, coffee in hand, on the porch to greet us. All the bad just melted away, in the warmth and love of the children. (You have to understand that the 'children' are Mara, age 27, Hamilton 30, Jay 34, Chris 41, his lady Gwen 34, Ellie 46 and her husband, Rob, 46.) They had all been pretty devastated by the news and we had been talking to them several times a day, and they to each other. They had all arrived in time for the rehearsal dinner Friday night, so they were quite settled in. All but Rob & Els had actually come in Thursday, and had also gone out to the bride's parents (Bill & Annie Hollowell) for dinner that night, too.
Happily, I wasn't in any pain anymore. Amazing how it just dissipated overnight.
We spent the morning hanging out, until it was time to get dressed and go to the Hollowell's Foxfire Ranch where the wedding was to take place. We had to get there by 3 for lots and lots of photos. First they took the groom's family, in a variety of configurations and poses. Ham had spent the night at our house, holding to the tradition of not seeing the bride until the wedding.
Then, when it was Annette's turn with her family, we all went downstairs to wait. At one point. the reverend gathered us all together and said a special prayer for me, for Sister Vicki. I was very moved.
Finally, we all climbed to a van and went to the pavilion for the ceremony and reception. Since it had rained there for the previous 17 days, a wedding on the front lawn was out of the question. But the pavilion worked just fine, and it wasn't raining. I took a pain pill as a 'just in case,' not because I needed it.
It was thrilling to walk down the aisle with Tony to our seats. Jayson and Chris looked fabulous in the groomsman's tuxes, Mara looked gorgeous in her eggplant purple bridesmaid dress (each had a different vibrant color). Ellie looked incredibly elegant (I always see her in casual clothes, never dressed up) in a simple black dress, prepared to read from Kahlil Gibran's The Prophet on marriage, as part of the ceremony Ham and Annette had put together.
The ceremony was fabulous. The music was great -- including the church choir. Annette looked glorious in her floor-length white dress, Ham looked stunning in his cream colored tux. They glowed.
Afterwards, strangers kept coming up to me, some with tears in their eyes. to say how glad they were we had made it to the wedding. They all said they were praying for me. It felt like everyone there, all 250-plus people, knew about the diagnosis and how close we had come to missing this momentous event.

Wedding Part 2

The ER doc kept saying how sorry he was to have to deliver such news. I think I reminded of his mother. He had to tell her 8 years ago she had Stage 4 breast cancer. (She is still alive today & doing well.)

I never saw the hospital's head of surgery, but through Chris & the ER doc, he passed on word that I needed to be transferred to a larger medical center in Albany. He feared that if the adrenal mass started to bleed, they were not equipped to handle it. The ER doc wanted us to go to Albany Medical Center.

This was our first test of control. We had had a bad experience years earlier at Albany Med, when we walked out with our then 3-year-old rather than go through with a hernia operation there. We found it very cold & uncaring. We could not imagine feeling confident about treatment there. So we insisted the ER doc make arrangements at St. Peter's Hospital instead. He was reluctant at first, since he may have known people at Albany Med & the transfer arrangements might have been easier, but we were firm.

We waited in the windowless room in the ER for hours while transfer details were hammered out. I had morphine for the pain & anti-nausea drug for the vomiting, both of which were effective.

I wanted to ride up in the car with Tony but they were insistent I go by ambulance. Chris urged me not to argue, so I let my protests die.

We had been in the ER since 7 a.m. They were finally ready for transport about 3 p.m. The one bright spot was that I didn't have to go through St. Peter's ER also. Greenport Rescue delivered me right to a hospital bed in a semi-private room.

Now the other big plus about St. Peter's for us is that serving with Tony on a bank board of directors is a man who has served on the St. Peter's board for 17 years. Tony called him before we even left Hudson, to get the names of the top oncologist & surgeon at St. Peter's. Normally, neither Tony nor I would be inclined to make a call for any special favor, but there was nothing normal about the day.

Chris, who had spent the day shuttling between us in the ER & working in the hospice unit, followed the ambulance up, while Tony went home to feed Max (our 6 ½ year old Golden Retriever) and pick up some things. He arrived shortly after we did.

Now, in the hindsight of just 11 days later, the next couple of days at St. Peter's are a bit of a blur – nice nurses, lab techs, aides, being poked to draw blood every couple of hours round the clock, an 85-year-old roommate recovering from some lung problem who had a helluva cough & very loud daughters. On the 2^nd night the president of St. Peter's stopped in briefly to check on me. I assured him I was very pleased with the care.

On day 2, they repeated the CT scan I'd had in Hudson. I had to drink something like a banana smoothie for the contrast. Somehow, the fact that I normally hate banana seemed so unimportant, altho' the mixture Hudson uses for their contrast scan was much more palatable.

The St. Peter's radiologist had a different interpretation from his CT scan, than I'd had in Hudson. The St. P's doc didn't think it was necessarily bleeding, that it could be some other fluid, and that in any case, it seemed to have stopped. Seems that part of the adrenal gland is in a tight area of the body, so any enlargement would cause pain – luckily. If it had been in a roomy part of the abdominal cavity, there would have been no pain, no reason to seek medical attention. So it all might have progressed much further before detection.

Actually, the Hudson ER doc found a chest x-ray I'd had a year earlier when I'd come in with bronchitis and it showed a tiny spot on the lung. I had never been told. It was missed. But given how much I hate the thought of surgery, perhaps it is better. I am surprised at how little I care that it was missed. It is what it is.

It is now two weeks later. I have now known I have lung cancer for two weeks. Trying to go back and create a coherent narrative of the last two weeks is difficult already, but I'd like a record.

It was the middle of the night on Wed/Thursday morning at St. Peter's when I realized it was crazy to let this stop us from getting to Ham's wedding.The pain was gone. The tests scheduled (needle biopsy, PET scan) could wait another few days.

The doctors were worried about my going, but we found a hospitalist who was new at St. Peter's who was willing to discharge along with pain meds prescription. He was perfect. When I asked what brought him to St. P's (once a journalist, always a journalist), he explained it is his day job, that he came to do research in joy & ethical living with someone in the area. (Tony recognized the name & said the guy has a reputation as a cultist.) But how could someone here to study joy not help us get to our son's wedding.

In what we quickly learned is typical hospital routine, Thursday morning was spent waiting while paperwork was done. The oncologist we had seen the day before and liked so much, Dr Arthur Sunkin, did not come around. We think he didn't want any part of the discharge. (When we saw him in his office 10 days later, he said he was glad we went to the wedding.)

So after a quick stop home to shower & pack & drop the dog at the pet sitter, off we went, pain meds & scans in hand. All the docs wanted us to have the scans in case we needed to seek emergency treatment along the way.

Thursday afternoon in the car was great. Weather was good. I was pain free & we were heading to our son's wedding & what was really a family reunion. I hadn't seen another of our sons, Jayson, in 17 months. He lives in the mountains of Colorado, where he owns a guide service (Crested Butte Mountain Guides).I had rented a big house in Oxford, MS, so we could all stay together.