The Narrative thus Far

This will, undoubtedly, be the longest entry of the blog for a while, but it needs to catch a bunch of people up on the story from the beginning and fill a whole bunch of other people in on gaps due to my inconsistent and otherwise quirky communications over the eight or nine days. So here goes

Monday, 23 April 2007—For those of you who don’t know, Sherri is a Vice-President of Performance Assessment Services at the Minneapolis-based Data Recognition Corporation. As part of her company’s wellness initiative, Sherri arrived at the Mayo Clinic in Rochester, Minnesota for what was scheduled to be a three-day physical examination. The bulk of the first day was made up of fairly ordinary sorts of tests and evaluations and terminated with a face-to-face physical with one of Mayo’s Internists.

During this examination, the physician was puzzled to see that Sherri’s right lung and diaphragm were being pushed out of place for some reason. He was further surprised to find what he described as a “hard mass” near her stomach, which was, of course, not supposed to be there. The doctor told Sherri that she would need to have a CT scan and that the clinic would attempt to work her into the schedule as soon as possible

Tuesday, 24 April 2007—Late in the day, after she had been seen by a variety of specialists, scheduled in the normal course of the physical, Sherri was called to get her CT scan. Very soon after it was completed, she was informed that the scan identified a 25 cm (later revised to 35 cm—with complete dimensions a bit difficult to describe) tumor. Diagnosticians were immediately convinced that the tumor is a very rare form of cancer called a “retroperitoneal liposarcoma.”

Sherri was informed that she would have a surgical consultation the next morning at 10 am. She called me to tell me what was going on, and I called my mother, who, in a little more than four hours arrived from Toledo to take care of Emma. Thanks Mom.

Wednesday, 25 April 2007—I was able to get to Rochester by about 8:15 and accompanied Sherri to her surgical consultation. Here, we saw the actual film of the CT scan and became aware of exactly how horrifying this tumor is. This large mass stretches across the breadth of Sherri’s Torso, pushing some organs out of its way and engulfing others. The surgeon said that the tumor is very large and would make a long and difficult surgery, but that he could remove it if necessary. He explained that while it is possible that such surgery could be completely successful, it is also possible that he would not be able to remove the entire tumor or that in the process or Sherri might lose a kidney, her spleen, and/or part of her stomach in the effort to remove the mass. The surgeon believed that the logical next step was to seek input from Mayo Clinic oncologists on the possibilities of shrinking the tumor prior to surgery through chemotherapy or radiation.

We left terrified and uncertain of the next steps in the process, waiting for the team that would be involved in Sherri’s treatment to take shape.

Later in the day, we were contacted with our schedule. Friday she would have a biopsy, Monday morning would be her evaluation with a medical oncologist and Monday afternoon would be her consultation with a radiation oncologist.

Thursday, 26 April 2007—Nothing scheduled: very excruciating

Friday, 27 April 2007—The clinic scheduled six hours for Sherri’s biopsy figuring for sedation and recovery time. Those of you who know her best will not be surprised to hear that she completed the biopsy in less than three hours since she refused pain medication or sedatives. The nurses involved with this biopsy were impressed and possibly a little bit disturbed by her refusal to wuss-out.

Now the problem of how to kill two an a half days before seeing the oncologists and finding out what was really going on here. . .

Saturday, 28 April 2007—By some bizarre and lucky coincidence, my aunt, Brooke Davis just opened in a hilarious musical comedy in Minneapolis. And in another stroke of luck, my uncle, Barry, was coming to Minneapolis from Tucson (where they live) to visit her. They very generously invited us to Minneapolis to see Brooke’s show, have dinner, and then they put us up in the unbelievably hip Chambers Hotel in downtown Minneapolis. To give you some idea of how cool this place is, in the restaurant of the hotel is a video art installation that we saw in San Francisco MOMA only nine months ago.

Anyway, I’m sure that we were not much fun to have as company for a night out, but Brooke and Barry helped us pass pleasantly what would have otherwise been a completely unbearable Saturday.

A side note: I know that many readers of this blog live in Minneapolis, and I would really not be doing a complete job as a blogger if I didn’t spend a bit of time talking about Brooke’s show. The musical comedy is called Menopause the Musical and is being performed in theater called The Lab, located at 700 1st St. The show focuses on the trials and tribulations of four women from very different backgrounds who share the common struggle with “the change.” The music consists of re-lyric-ed pop, rock, r&b, and soul hits from the last forty or fifty years of popular music. The songs are hilarious, the physical comedy beautifully executed, and all of the actor/singers are terrifically talented. In the pits of despair as we were, the show still managed to wrench multiple laughs out of both Sherri and me, and I would never have thought that possible. Get your tickets here.

Sunday, 28 April 2007—Drive back to Rochester. Nothing scheduled: very, very excruciating

Monday, 29 April 2007—We arrived at our 9:30 medical oncology evaluation to a bit of bad luck. The pathologist’s report on the biopsy had not yet been completed. Because of this, the oncologist who saw us was able to do little more than give us a general understanding of how, in general, liposarcomas are treated and what sort of options are available. However, he was very careful to explain to us that each case is different and needs to be evaluated and handled differently. Frankly, what it came down to was that he was unable to give us any clear understanding of what we had coming until he had the pathology report. The result of this meeting was to leave us, frankly, even more terrified than we were before our meeting with him.

We sulked around Rochester for about an hour and then returned to our hotel room to try to gather our wits. It was at this point that we got our first remotely decent news in a week. The internist who had been working with Sherri from the beginning of this process called to tell us that the results of the biopsy had made it to the oncologist’s office about five minutes after we left.

According to the internist, the tumor was determined to be a well-differentiated tumor, which basically means that while the tumor is very large and prone to local recurrence, it is of relatively low-grade malignancy and less likely to metastasize. (Peggy, did I understand this right?) Because I was at the time too stupid about cancer to understand remotely what the doc was telling me, he had to explain that this was the best possible news we could have hoped to receive. I believe what he said was (and it was actually kind of cute in his Indian accent), “If I had to have a sarcoma, this is the one I would want.”

At 2 pm we met with the radiation oncologist, a particularly impressive man, who agreed that we had good reason to be encouraged by the results of the cytology, but that biopsies aren’t perfect and that we need to be aware that we won’t know for certain what we are dealing with until it is actually removed and a full pathology is completed.

He was also able to clear up a really important question for us: I’m not sure I’m going to be able to explain this well enough so I hope everyone will bear with me. The physicians at the Mayo Clinic are not like the docs I’ve run into anywhere else. For the most part, these people have an aura of confidence, competence, and brilliance that I have not been around before in a medical setting. It’s sort of like if you had scheduled an hour with a golf pro at the club, and when you showed up your teacher turned out to be Nick Faldo or Vijay Singh. Still, whenever they have shown up to talk to us about Sherri’s case, they all seem just a bit more troubled than Sherri or I have been completely comfortable with. Our radiation guy explained it: There are only a few places in the country really well equipped to deal with sarcomas, the Mayo Clinic being one, but even they see very few of these, and frankly, Sherri’s is the biggest one any of them has ever seen. Impressive, huh?

Anyway, he also made the following points:

1. Given that this is a well-differentiated tumor, he found it unlikely that the medical oncologist would be willing to conduct chemotherapy. He believed that since surgery is certainly in Sherri’s future, it would be unwise to risk weakening her health before surgery in the off-chance that chemo would result in some small shrinkage in the tumor.

2. Given the size of the tumor, it presents a variety of problems with regard radiation therapy. First he would not be able to radiate the entire tumor without risking serious damage to organs that are involved. And (this is the bit that I don’t really understand so if any of my expert pals can clear it up, go for it in the comments) if he radiates the tumor before the surgery, and radiation fails to shrink it, he won’t be able to come back and do radiation at a later date if, for example, the surgery is incapable of getting the whole tumor or if they need to do radiation during the surgery. This stuff is really complicated to me, folks, so I’m pretty sure I’m doing a bad job with it, sorry

3. Given points one and two, he believes that the best course of action is to go after the tumor surgically and clean things up with radiation or chemo if necessary, afterwards.

This was a fairly satisfying consult to Sherri who has said repeatedly over the last week, “I just want this thing out of me,” and was never fully satisfied with my belief that we need to hear as many voices checking in on this as possible before we make any rash decision.

Another side note: “I just want this thing out of me”—I believe she said also this repeatedly the week of August 20, 1995 before Emma was born.

Tuesday 1 May 2007—Today I’m writing this really long blog, not sure whether I’ve been the least bit coherent, knowing that I’m going to post it with virtually no proofreading, just to have it up and started and out of my head where it’s been swirling around since the first day Sherri came up with the idea of blogging her cancer experience. And now I’m sort of wondering whether she meant the blog more as therapy for me than for any of you.

In the radiation consultation, it became clear that we were not going to get to surgery this week, and it might not even be next week, but we do, finally, appear to have a plan.

Our next major event is our Thursday 2 pm surgery consult, again with the surgeon we saw that first horrifying Wednesday that now seems very long ago. In that appointment, we hope to nail down a surgery date so we can get to the business of beating this thing. The sooner this is just a story we tell people the better. In case you’re wondering, here’s how I intend to start that story:

“One week, back in 2007, I spent a year in Rochester, Minnesota. . . “

UPDATE 3 May 2007
We met with the surgeon as scheduled today and now have a surgery date of Tuesday, May 8 at St. Mary's Hospital in Rochester. We're not sure what time it will be yet, but we will update the blog as we get information.

We will be taking Emma with us, and my parents will be along to keep her insulated, so I hope no one worries about that. The dogs will also be covered thanks To David Roberts.

GW