Monday, August 31, 2009

A Great Light Revisited

A number of years ago I attended a session of the Mennonite Camping Association biennial conference in Michigan. The group of Mennonite camping professionals from throughout Canada and the U.S. assembled for an evening worship session. The room was fully lit and on a stand in the center of the room was a small candle on a stand. The candle wasn’t anything that would draw more than a passing glance. Certainly it was not remarkable, nor memorable.

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.

T Minus One

Last night at about 10:30 they administered the Melphalan to Sue. It took about 30 minutes to drip in intravenously. The whole thing was anticlimactic. The most interesting thing was that they asked Sue to chew ice or popsicles to shrink the tissues in her mouth and neck so that the side effects of sore mouth and sore throat will be minimized. She managed two cherry popsicles during the 30 minute drip. Then they made her chew ice for another half hour.

Today Sue has been sick all day. She didn't sleep much last night so now she's sleeping. Note that she's wrapped in love, i.e. the Sue-Blue quilt her friends made for her. She's missing a great view from her window. It's not too clear in this picture, but you can see the tops of the Golden Gate Bridge in the distance above the top of the 400 Parnassus building. You can see it better if you click on the picture to enlarge it. Use the back arrow to navigate back here.

This is the lunch Sue probably won't eat. It's been sitting here for about an hour already. Sure, the picture's a little out of focus, but you really don't want to see it in all its detail anyway. [Recommendation: don't click on this picture.] At least she's getting her fluids, whether she wants them or not. She can't go anywhere without her rolling ivy buddy.
This is day T Minus One because tomorrow, or early on Wednesday, they will give Sue back some of her stem cells that they harvested earlier this month.

A Jog In The Park

Most of you readers probably think I'm a pretty good guy for sacrificing and coming up to San Francisco to be with Sue while she undergoes this stem cell transplant. Yeah, I am, sort of. But really, let's be honest; The human condition is one of self-centered-ness. When you distill it down, this is all about me and my adventures centered around Sue's situation.

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.

There are walking paths all around -- it is a national park you know -- and at various points you have great views of the bay, the Golden Gate Bridge, Alcatraz island, etc. Down at the bottom of the hill you come to Golden Gate National Recreation Area with a long beach and several wildlife protection areas, all laced with walking/jogging trails.

If you jog or walk west along the beach at Golden Gate National Recreation Area you come to the coup de grace, a public fishing pier in the shadow of the Golden Gate Bridge. At the left end of the pier is a "warming hut" which is really a National Park Service gift shop, coffee shop/lunch counter.

On the way back to the apartment, back in Presidio Park, you go through a nice refined park with gazebos, streams and waterfalls.

And just up the hill from that, overlooking it all, is the coolest Starbucks coffee shop you ever want to visit. You can see the white railings surrounding the outside seating area of the Starbucks on the bottom floor of the red brick building beneath the tree and above the walker's head.

Ahh. I love the smell of napalm, er, I mean coffee, in the morning.

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

Stepped Up

I'm done with the Carl Hotel for a while. David Carico, Sue's step-brother, called to offer me the use of his one bedroom apartment. It's at the corner of Filbert and Baker Streets, between the prestigious Pacific Heights district and the bay. Presidio Park is one block to the west and an ambitious walker could get to the Yaght Club on Marina Boulevard in about ten minutes. Best thing: it's quiet. Second best thing: it's bigger than 12 X 15. Third best thing: it's not a "sleeper chair" at the hospital.

Just Do It

The whole question today was, would the hospital have a bed for Sue to check into on 11 Long? We were to call after 9 a.m. to see. Sue's been increasingly nervous and nauseous thinking about the Melphalan part of the STC.

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

We Saw A Grate Light

We are back in San Francisco. We checked back into the Carl Hotel and then walked back to Cole Street. There's a hardware store there called "Cole Hardware" that Sue wanted to visit the last time we were here but they closed just before we could go in and look. It was there, in the window of Cole Hardware, that we saw a grate light.

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.
O.K. That was reaching a little.

We went back to Bambino's Ristorante for dinner. It's right accross the street from Cole Hardware. If you look close you can see the Cole Hardware sign reflected in the Bambino's window. Breaking bread and
drinking wine over a candle lit table at Bambino's did have kind of a last supper feel to it. Actually, we had pizza and it was lovely.
After dinner we took a drive around San Francisco. Today was quite a warm day and it was a Saturday close to the start of the new school term, so there were hundreds of college "kids" headed back from the beaches and the parks. And the Saturday night crowds were making their way to the restaurants and theaters and the City was just abuzz. It can make you want to fall in love all over again to be in San Francisco.

Tuesday, August 18, 2009

Great Harvest

Sue was on the dialysis machine for about five hours today. Dina, the nurse assigned to Sue, was very pleased with the amount and color of the bag of stem cell blood collected from Sue. Based on her experience, and without seeing the actual test results, Dina thought Sue had done very well. We left the hospital about 2:00 p.m. with an appointment to be back to meet with Bridget at 4 p.m.

Before we started the harvest process, Bridget had prepared Sue for the worst. Sometimes the harvest takes a number of days. It really depends on how many stem cells your body produces. The Neupogen is supposed to facilitate white blood/stem cell production, but they opted not to give Sue the super expensive (like $6,000 per shot) Plexifor. At 4 p.m. Bridget would tell us the results of today's harvest and determine the course of things for tomorrow.

A stem cell transplant takes about 3 units of stem cells (we don't know what the unit measure is). Dr. Wolf likes to collect at least 10 units of stem cells if possible, so that multiple stem cell transplants over a course of years are possible from one harvest. 6 units would be a minimum target, and sometimes it takes a week of harvesting to get that many. Because Sue did not get the Plexifor, all the staff were anticipating a multi-day harvest.

At 4:20 p.m. Bridget delivered the news: SUE DID GREAT! They harvested 15 units of stem cells from her in one day! That's enough for up to five stem cell transplants. The doctors on staff and Bridget were pretty amazed. Sue just might be a textbook case -- the good results kind.

We recognize this Great Harvest -- and the good results of Sue's whole course of treatments so far -- as the answer to the many prayers of our friends and families. We thank you all for your support and for walking this road with us.

Deja La Luz Encendida, Por Favor

It occurred to me late in life that I missed the boat by not learning Spanish in my youth. Like most things, language learning comes easier to the young. Notwithstanding my age and sluggish brain, I determined at age 50 that I would become fluent in Spanish. While I have yet to become fluent, I have learned enough words and phrases to get by. Pondering words and thoughts in a foreign language can add perspective to your native language thoughts.

For example, in Spanish the same word, "esperar," is used for "to wait" and "to hope." The beautiful Spanish name "Esperanza" (Hope) comes from it. "Nuestra esperanza está en Dios" can be tranlated most directly as "our hope is in God." "Estamos esperando a Dios" means we are waiting for God. But in the "to" form of the verb, "we are going to wait for God" or "we are waiting for God" and "we are going to hope in God" or "we are hoping in God" comes out nearly identical: "Vamos a esperar a Dios" and "Que vamos a esperar en Dios."

Consider Jeremiah 14:22 in English and Spanish:

Jeremiah 14:22 (New International Version)
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.

Jeremías 14:22 (Nueva Versión Internacional)
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.

Contemplating that in which we place our hope can lead to ambivalence. You might remember the old Doris Day song "Que Sera Sera" -- "What Will Be Will Be" -- or "Whatever Will Be Will Be." On the other hand, it can also lead to clarity. Do you remember the Spanish love song "Eres Tu?"

(Eres Tu - by Juan Carlos Calderon)
Como una promesa, eres tu, eres tu
Como una manana de verano
Como una sonrisa, eres tu, eres tu
Asi, asi, eres tu.

Toda mi esperanza, eres tu, eres tu
Como lluvia fresca en mis manos
Como fuerte brisa, eres tu, eres tu
Asi, asi, eres tu

Eres tu como el agua de mi fuente
Eres tu el fuego de mi hogar
Eres tu como el fuego de mi hoguera
Eres tu, en mi vida el trigo de mi pan

Como mi poema, eres tu, eres tu
Como una guitarra en la noche
Todo mi horizonte eres tu, eres tu
Asi, asi, eres tu.

[Eres Tu - English translation]

Like a promise, you are, you are
Like a summer morning
Like a smile, you are, you are
Like that, like that, you are

All my hope, you are, you are
Like fresh rain in my hands
Like a strong breeze, you are, you are
Like that, like that, you are

[Chorus:]You are like the water of my fountain
You are like the fire of my home
You are like the fire of my bonfire
You are my life, like the wheat of my bread

You areLike a poem, you are, you are
Like a guitar in the night
My whole horizon, you are, you are
Like that, like that, you are

P.S. "Deja La Luz Encendida, Por Favor" means "Leave The Light On (Burning), Please."

All Hooked Up

There is an elevator from Irving Street to Parnasus. But Sue got hooked up this morning with a sadistic personal trainer. He made her walk up the hill.

This is Dina, Sue's attending R.N. for the stem cell harvest. She got Sue hooked up to the dialysis machine on the left. The machine "borrows" blood from Sue, spins out the stem cells with a centrifugal separator, then puts the blood back.

The ins and outs of the harvest.

La machina. The machine.

Long and Short

We wondered why this hospital was called "the Long Hospital." Was it because it is longer than the Moffitt Hospital? Well here's your short answer.

Monday, August 17, 2009

Carl 324, N Judah, 11 Long

On our way to San Francisco Sunday afternoon we kept seeing the lit-up roadside signs warning us that the Bay Bridge will be closed from September 3 to 8. This, coupled with the threats of an imminent strike from the Bay Area Rapid Transit (BART) workers left me thinking it might become absurdly difficult, if not impossible, to get into or out of San Francisco over Labor Day weekend and the week following Labor Day. Sue’s set to start her stem cell transplant on September 1.

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!”

Sticker Shock

Sue got her catheter tube in today. This is the tube they use to hook Sue up to the dialysis machine to spin out her stem cells, then put the blood back in. You'd think they could do something to make the darn tubes a little more subtle. But no, instead, after they got them sticking out of her neck they covered them up with a bright red sticker that, well, sticks out like a sore thumb. Sue looked in the mirror and got a little sticker shock.

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 I Guess

It was subtle, but it was there. I didn't notice it until we returned from the recent meeting with Dr. Wolf in San Francisco. Then I realized -- Sue's been "nesting."

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:

Today Is My Eleventh Birthday

Prepare Ye The Way

Saturday, August 8, 2009

CR, Recidivism and Sin

After reviewing Sue's charts on Augst 5 Dr. Wolf pronounced that Sue's cancer was in "complete remission." He then explained that "complete remission" (or "C.R." as cancer people like to call it) does not mean that Sue is cured or that her cancer won't come back.

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

The Regal Treatment

Yesterday was the day of full disclosure. Ostensibly this is the day you meet with the doctor and s/he tells you everything that could go wrong, then you sign a consent form saying you understand all that and you still want to go forward. Getting informed consent before doing risky medical procedures is legally required and morally a good idea, so without a signed consent form, the show can't go on. So if you want the procedure, after they tell you you're probably going to die a horrible death etc. (which, if you're informed you already read 17 times before coming to the meeting) you're going to sign the form anyway. Actually, I marvel at how the disclosure process is part disclosure and part sales job.

We met with Doctor Jeffrey Wolf and Bridget Mazzini, R.N. Bridget's title is Bone Marrow Transplant Coordinator. She, together with a staff who work with her, does all the appointments scheduling, insurance pre-approvals, and coordinating information flows with the local doctors. She also appears to organize the charts for Dr. Wolf and she is well informed about your chart etc. UCSF does about 130 of these procedures annually, so you can imagine how organized she'd have to be to be the coordinator.

In addition to the meeting to obtain our informed consent we had an appointment with a social worker. This was an important appointment because the social worker has the power to recommend or not recommend the procedure to the insurance company. We were told the social worker would want to meet some of Sue's support team, so Cindy, Maggie and Nurse Debbie took the day off to accompany us to San Francisco. Apparently by "bring your support team" they meant something like, your husband, because there really weren't any meeting rooms big enough for our entourage of five plus Dr. Wolf and Bridget. So we got to meet in the grande U.C. Regents conference room. Ooh la la. The Regal treatment.

Dr. Wolf took the disclosure process seriously. Sue asked Dr. Wolf some hard questions like "how long do I have to live?" and "what does it look like to die from multiple myeloma?" To his credit, Doctor Wolf did not shrink back from these questions. His answers were forthright and compassionate. And sobering. Our support team gave Dr. Wolf and Bridget their unanimous seal of approval. We believe Sue is in good hands.

It fell to me to ask all the really hard questions, like can our support group get a group prescription for medical marijuana. For a moment there I thought Dr. Wolf was going to write the prescription, but then I thought I heard him silently counting under his breath. For more on Dr. Wolf, see my July 15 post titled Blood Harvest and click the Dr. Wolf links. For more on medical marijuana, see my July 29 post: I Love The Flower Girl, and click the Haight-Ashbury link.

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?