Monday, August 31, 2009
After the assembled group sang for a while the speaker took the podium and asked that the lights be turned out. When the room went dark, instantly the candle became the sole remaining light source in the room, and the candle became the focus of attention. It’s significance greatly magnified by the absence of any other light source. The speaker went on to point out that when people are in darkness, even a small light becomes a source of focus and hope. We are naturally drawn to the light.
If you are healthy, you may not think much about the darkness that overcomes people who are afflicted with chronic illness. It’s not easy being cheerful and hopeful when you are sick and sore and tired all the time; when life as you knew it is gone and death stares you in the face. Depression and sadness come over you like a moonless night. Even the smallest kindness can be a beacon of light and hope for someone mired in such darkness. I encourage you be that light for someone today.
Isaiah 9:2; Matthew 4:16
The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned.
P.S. Throughout her cancer experience, Susan has been blessed and lifted up by many kind and encouraging and thoughtful people. Most of you who read our blogs are counted among them. Thank you.
For example, I slept great at David's apartment last night. No trains. No busses. No people out on the streets making noise. It's just a quiet upscale S.F. neighborhood.
Then I got up this morning to take a little jog through Presidio Park. There are lots of grassy, tree-lined streets in there with names of famous generals and quaint old military houses.
On the way back to the apartment, back in Presidio Park, you go through a nice refined park with gazebos, streams and waterfalls.
So that's it. Notwithstanding that Sue is sick and in the hospital, my life right now is just an adventurous jog in the park. You needn't feel sorry for me -- unless you want to feel sorry for me being such a shallow, self-centered person.
Sunday, August 30, 2009
We ate breakfast at the Reverie coffee shop. Initially I confused the word "reveille" with "reverie." Reveille seems like an appropriate coffee shop name -- the "wake-up bugle call coffee shop." Reverie, it turns out, is even more appropriate to this day. It means "a state of dreamy meditation or fanciful musing, e.g. lost in reverie," or "a daydream."
After coffee and eggs at the daydream coffee shop Sue called in to see if she'd get checked in today. The charge nurse was busy, so Sue left a message and we drove to the beach. We walked out on a sandy hill overlooking the breakers and saw two whales spouting off and cruising south to north not more than 50 yards off shore.
We drove back along the south side of Golden Gate Park. Clearly there is a big event going on there today, with traffic controls and staff posted at every entrance and people making their way into the park. All we could make out from the signs was that it would be some kind of a music and art festival. Sue was still nervous so I suggested she call in again. She did and they told her to report to admitting on the first floor.
Admitting was a long process, but now she's in "her" bed, bed number 1 in room 1151. The room has a great view overlooking San Francisco. We can see Golden Gate Park, Presidio Park, the top of the Golden Gate Bridge, the financial district, the bay, the whole caboodle. Sue's got the inside bed, though. She has a room-mate for the next two days, then she'll be moved to a private room.
So far we've met Lindsay (that's Lindsay with Sue), the R.N. assigned to Sue and three other patients for the next four days, and Dr. Joy Hsu, a doctor working with Dr. Wolf's patients and the primary RX administrator. 11 Long has it's own pharmacy. Get this, I calculated this morning at the Reverie that Sue's been taking 54 pills a day!!! A pharmacist's dream. Hsu is prounounced Sue. It's a good omen. Joy Sue. Nice.
While we were out tootling around the hallway we ran into Dr. Wiedewilt, the doctor who first interviewed Sue on her first visit to UCSF. He was making some rounds on 11 Long. Dr. Wolf just popped in a few moments ago. He's working on the calculations for Sue's Melphalan dosage. Sue's nervous and nauseous. She wanted to call one of her friends but she was afraid she'd cry so she didn't do it. That's o.k. The staff here are all very nice.
There have been about 4 or 5 other medical staff in and out of Sue's room -- including an x ray tech who took a chest x ray, and a lady who just came in just to measure Sue's wrist for the calculation of how much Melphalan to administer. The calculation Dr. Wolf is making takes into account height, weight, and apparently wrist circumference.
It's 3:30. Dr. Wolf says they'll start the Melphalan soon. They refer to this moment of administration of the Melphalan as "T minus 2." What that means is, it takes about 2 days for the drug to work itself out of Sue's system, or for her system to work the drugs out. That day is called "day zero" because that's the day they administer the previously-harvested stem cells. The actual time for that is whenever the blood tests show that all the blood cells have died.
From there they count days upward as Sue's body works to heal itself. Well, she's still nervous and nauseous. I guess here's where Mark W's advice kicks in. The best way to accomplish a hard job is to just start it. Or, as Nike puts it: Just Do It.
Saturday, August 29, 2009
Barring any problems Sue will be checking in to the hospital tomorrow morning to begin the Stem Cell Transplant procedure. Now that Sue's day of reckoning is upon her Sue's feeling a little like these cheese grater lights; her nerves are a little shredded but she can see a light at the end of the funnel.
Tuesday, August 18, 2009
22 Do any of the worthless idols of the nations bring rain? Do the skies themselves send down showers? No, it is you, O LORD our God. Therefore our hope is in you, for you are the one who does all this.
22 ¿Acaso hay entre los ídolos falsos alguno que pueda hacer llover? Señor y Dios nuestro, ¿acaso no eres tú, y no el cielo mismo, el que manda los aguaceros? Tú has hecho todas estas cosas; por eso esperamos en ti.
P.S. "Deja La Luz Encendida, Por Favor" means "Leave The Light On (Burning), Please."
La machina. The machine.
Monday, August 17, 2009
We’ve been debating whether or not I should spend the money to rent a room in ‘Frisco for the month of September. I’ve come up the 101 from San Jose during “ordinary” traffic. If they close the Bay Bridge, and God forbid, if BART workers strike during the same time frame, imagine the mess on the 101. I’m thinking now that I’m going to rent a room and hole up here for at least the first two weeks of the STC ordeal. I’ve got plans. Big Plans with a capital BP.
We stayed at the Stanyan Park Hotel last time in town. That was nice but not luxurious for about $130 a night. This time around the Stanyan Park was booked, so we’re staying at the Carl Hotel, room 324. It’s a step down in class at $80 a night ($510 by the week, plus 14% room tax), but $50 a night cheaper and a shorter walk to get to the UCSF medical center. The Carl is at the corner of Carl and Stanyan, about a three minute walk from where Sue’s being treated.
The N-Judah electric train runs right past the Carl Hotel on Carl. All day and all night. Our room overlooks Carl street, so we get to hear the trains. Fortunately, the frequency tapers off the later it gets. The N Judah is handy though. We rode the whole N-Judah loop last evening just for fun. You can ride the N-Judah to the Ocean west of UCSF, at the west end of the Sunset District on, what else, Judah street. There’s a big beach out there with dunes where you can get sand in your socks. Or, going the other direction, you can ride the N-Judah east down multiple stops along Market Street: Union Square, the Financial District, the Ferry Building at the Embarcadero. And, guess what? N-Judah stops at Pac Bell, er, uh, AT&T Park. Hmm. Maybe a baseball game's in my Big Plans future?
Sue’s stem cell harvest starting tomorrow, and her stem cell transplant starting September 1, will be in the UCSF Long Hospital on the 11th Floor. Around here they just call it “11 Long.” Hey, it’s that magical time of year where baseball season crosses over with the start of football season. Maybe there’s a football game in my Big Plans future, too? I think it’s kind of an omen. If you say this just right, it sounds like a quarterback calling a play from the line of scrimmage: “Carl 3-24, N Judah, 11 Long! Hut! Hut!”
Sue has a blue scarf she brought along for the occasion. She'd been forewarned by one of her myeloma cancer sisters that they put the catheter in your neck in a visibly obvious place and that she (the cancer sister) did not feel comfortable going out in public with tubes sticking out of her neck. She advised Sue to bring a scarf along. Good advice. We had a nice dinner at a crepe restaurant at the corner of Carl and Cole streets. I'm telling you, it's a young crowd spilling off the N-Judah train there; no gray hairs in the bunch. After dinner we took a stroll down Cole and admired the many colorful Victorian houses.
So the whole stem cell harvest thing is a go. Bridget reviewed the results of Sue's blood tests with Sue this morning and again this afternoon. Her Neupogen shots are working like a charm and her white blood cell counts are very high. Much higher than Bridget anticipated. Importantly, Sue's bone's are kicking out a lot of stem cells. It's looking like a good harvest is in store. We're scheduled to start at 7:45 a.m. tomorrow. Nothin' like the excitement of starting a harvest at first light -- 'ceptin maybe goin' fishin' at first light.
Sunday, August 9, 2009
Nesting is a term used for what some women do when they are pregnant, to get ready for the arrival of the newborn. They clean house, stock up on food, organize, get the baby stuff ready. It's instinctual behavior.
No, she's not pregnant. But she is scheduled to go in for a stem cell transplant on September 1. I think the fact that she will be in the hospital for the better part of a month, coupled with the information that it will take 3 to 6 months to recover, coupled with the information that this myeloma is a serious and chronic disease which will most likely cause or contribute to her death at some undetermined but possibly not too distant future time, have triggered this response.
So we cleaned out the garage and gave away, recycled and discarded about three cubic yards of stuff. We called out Elisa, the housekeeper and we're calling out Scott, the window cleaning guy. We've updated our filing. Cindy took Sue out to get some plastic storage containers for fabrics etc. Those fabric-filled containers have been marked and stored on the new shelves in the garage. Even the current sewing and quilting projects have been categorized, labeled and put away.
Maybe nesting isn't the right term for this. But now we're ready, I guess.
Related Links of Note:
Saturday, August 8, 2009
As a matter of fact Sue's myeloma almost certainly will come back. The Leukemia and Lymphoma Society has an informational article about Myeloma on its Fighting Blood Cancers website. They don't talk about curing myeloma. Rather, they say that "the goals of treatment for myeloma are to: (a) slow the growth of the myeloma cells; (b)help patients who have bone pain, fatigue or other problems from their disease to feel better; and (c) provide long periods of remission (when there are no signs of myeloma and/or the myeloma is not causing health problems).
The LLS website defines "remission" as follows:
Remission. No sign of disease
Complete remission or response. No sign of M protein in the blood and urine. Normal percentage of plasma cells or no sign of myeloma cells in marrow
Partial remission or response. More than a 50 percent decrease in M protein in the blood.
Complete molecular remission or response. No sign of myeloma cells in the marrow using very sensitive tests.
Dr. Wolf put a little perspective on the complete remission diagnosis by saying it really just means there is currently no measurable amount of cancer in Sue (that is to say, it is not measurable with the instruments and techniques currently available). But there is still cancer there. If Sue had a trillion cancer cells before her (now completed) first four courses of chemotherapy, hypothetically she could still have a billion active cancer cells and nonetheless be declared to be in "complete remission."
The point of the stem cell transplant procedure (the super toxic chemotherapy part of it) is to kill as many of those remaining cancer cells as possible. The idea is to extend the time the patient spends in remission before having a relapse. Mathematically speaking, when the cancer cells start multiplying again, you want to start the inevitable exponential multiplication (exponential growth) with the lowest possible number.
Today I mentally equated multiple myeloma cancer to felons (the worst kind of felons, like child molesters, rapists, wanton killers, etc.). Think of a billion Charlie Mansons running around inside your blood. Think of society as the body, and prison as the bone marrow. The felons are recidivists. You know if you let them out they're going to wreak havoc, cause pain and dislocation and death. The last thing you want to do is let them multiply and run loose. You don't want even one paroled into your neighborhood, let alone a whole bunch of them. With apologies to my pacifist Mennonite friends, you know the best thing to do would be to kill them all. Sooner than later.
On a more personal note, we (you and me both) can equate myeloma cancer to sin. Say we had four courses of absolution from our trillion sins and are declared to be in "complete remission" from sin. Still, we know that there's a billion sins left in us, and somewhere down the road we are going to relapse. Then what are we going to do? Give up? Declare ourselves hopelessly immoral? No. We are going back for more absolution. Try to get them sin puppies back in remission.
Reconciling the necessary killing of the felons on the one hand and our own multiple absolution petitions on the other will be a topic for another day. We can only go so far with these analagies. The rotten apple has to be removed from the bushel. The cancer has to be killed.
Thursday, August 6, 2009
And regarding this support team. What's not to love? Here they are overlooking Mission Dolores and pontificating about the events of the morning. (click the picture for the full effect) And after the little oops where the concrete pole met her brand new Honda Pilot in the parking lot, the fiery redhead on the right showed amazing grace and forgiveness. For sure she's a saint. Or is she?