An intermedulary rod is a bit more technical sounding, but spike is clearly more endearing. I’m referring to the piece of titanium in my left humerus which is keeping the elbow and shoulder connected. Most such connections are solid. Mine just happens to be a swivel joint with a lot of slop. The techy term is malunion. Being a south paw fixing this would be a dream come true.
The plan developed with a couple orthopedic oncologist’ at the Cleveland Clinic is to pull the spike out, fill the hole with cement, jam in a new spike, screw it all together and then paint some bone growth goop on the broken spot. All this to be followed by several months of chemo-free healing.

That brings me to the techy chart on the right and how to blast away a bunch of MM cells. The stable seesaw has been going on for over a year now (My MM has been hovering around 15 times normal values, a 75% reduction, ever since that rapid response over the first 4 cycles on Revlimid and Dex). On Monday after about a half an hour my team decided on weekly Velcade infusions. Just before getting up to leave I inquired as to why on earth someone should “tell your doctor if you have blood cell problems such as multiple myeloma, or leukemia” before taking Viagra? I have never seen an MM warning on any medication – ever.  He said because the manufacturer has not obtained FDA approval for myeloma use. There are a few published clinical observations claiming efficacy of  Sildenafil (Viagra) in myeloma patients. He turns to Lu and asks, “Should he try it?” An overexcited Lu beams, “You bet, four times a day!” He turns to me, “She is trying to get all the golden eggs in one go… by killing the goose.” The patient’s quality of life should be fine though.
Just call me Spike.

The Way We Were

When Sue and I were married, back in October of 1980, I was an undergraduate student at California State University Fresno.  My job, every Friday, Saturday and Sunday, and every holiday, from 3:30 to midnight, was as an “environmental engineer” — i.e. housekeeper/janitor — at Saint Agnes Hospital.  The job was perfect for a student because it did not interfere with going to school.  However, Sue hated my job because it left her alone every Friday, Saturday and Sunday evening, and every holiday from 3 to midnight.

They call it Saint Agnes Medical Center now, and it’s more than twice as large now than it was back in the day.  Now, almost 30 years later, Sue’s hell bent on getting even.  She’s been over there every night from 3 to midmight for two weeks.

We met at a high Sierra Christian camp about three years before we got married.  I was on staff as a maintenance “man” and Sue was hired as a cook.  Maintenance back then meant everything from fixing things to cleaning toilets, and included washing dishes three and sometimes four times a day.  That set the tone for our marriage, as Sue has spent thirty years dirtying up the kitchen (she’s a really good cook, by the way) and I have spent 30 years traipsing behind cleaning it up.  Our youngest daughter likes to say that my favorite thing to do is run the dishwasher.  Darn right.  Leave no dirty dish behind! 

We’ve have had involvement with the camp, Camp Keola, in some capacity for all the time we’ve known each other, and our Lakeview Cottages which we co-purchased with a group of friends is right next door to Camp Keola, on the southwest shore of Huntington Lake.  So Huntington Lake is, quite frankly, our favorite place in the world.  In a sense, it is our place in the world.

Each summer for as long as I can recall, Valley Childrens’ Hospital runs a camp at Camp Keola for kids with cancer.  They call it Camp Sunshine Dreams.  The camp is run by the doctors, nurses and staff of Valley Childrens’ Hospital, as well as involved family members and volunteers.  It is an annual week of high-energy fun and encouragement for kids in a tough situation.  Through years of peripheral involvement with Camp Sunshine Dreams I learned one unequivocal truth: cancer’s tough on the body, but it doesn’t kill the spirit.  If anything, it kindles the spirit. (Click the Camp Sunshine Dreams link and look at some of the slide shows if you’re not convinced, or if you just want to be inspired.)

The Camp Sunshine Dreams organizers have a nice campfire tradition.  Every year on the last night of camp they have a special campfire where everyone puts down a wish or a hope or a prayer on a piece of paper, and wraps it up and puts it into the fire.  The prayers are sent heavenward with the heat and smoke and flames, and, mixed all together with each other, form a powerful elixir of life and love and hope.

Life is very real for the Sunshine Dreams kids, and so is death.  Every now and then they lose one of their kindred.  And then, by symbolism, or sometimes by ashes of the deceased, they introduce the decedent to the campfire of dreams, to the elixir of life and love and hope.  And when the fire has died down and cooled, they stir up the ashes and take home a jar of the ashes, and next year, when the campfire of hope is rekindled, they start with the ashes from the previous year. 

And that campfire of dreams is a metaphor for how we should live.  We have our hopes and our dreams and our prayers, and we offer them in community, sharing each others’ hopes and dreams and prayers; and we live life to the fullest; and we don’t forget our fallen fellow travelers; we take them with us and their spirit is and always will be a part of who we are.

Soft tissue plasmacytoma update 1

A quick update.
Went to the oncologist last week for a 6 week post radiation follow up. All is well; the two soft tissue plasmacytoma on my skull have reduced as expected. I asked for my hair back and all I got was a smile.
Unfortunately 3 more lumps have appeared and my IgG and paraprotein are rising.
The problem now is not soft tissue plasmacytoma in isolation but my myeloma being systemic (throughout the body). We need to treat the cause, myeloma returning.
I have been in discussion with my haematologist. The last treatment cyclophosphomide and dexamethasone only gave me 3 months remission. Valcade and Lenalidomid are not available by Pharmac for free in NZ, my options are reducing. As a result we are exploring the option of a clinical trial, preferably Lenalidomide and dexamethasone.
Big appointment Wednesday 10th afternoon.
Will tell you more when I know for sure.

Soft tissue plasmacytoma

The Bomb Revisited

Dr. Birnbaum came by this afternoon with Dr. Whitlinger.  Dr. Birnbaum is the neurologist called in by Dr. Crooks.  Dr. Whitlinger is an oncologist who works with Dr. Hacket.  They delivered the bad news.  The spinal tap shows a lot of active, malignant cancer cells.  Dr. Birnbaum says the fact that the spinal fluid contains malignant cancer cells is a sign they have spread beyond the spinal area to the whole body.  His take is that the cancer is interfering with neural transmissions, which is the cause of Sue’s muscle failure, as well as the cause of Sue’s pain.
The local doctors said they’d report the findings to Dr. Wolf, which apparently they did.  Dr. Wolf called my cell phone later in the afternoon and I put it on speaker and set the phone on Sue’s stomach, and we had a conference call with him.  He was grave and, God bless him, he’s never pulled any punches. When asked for his honest prognosis, he gave it to us straight.  He says it isn’t good.  He’s treated a lot of myeloma patients over the years and rarely has had one this tough.  He will prescribe massive doses of Dexamethasone (40 mg/day) and the current rave drug for myeloma, Revlimid.  However, he said Sue’s cancer has proven extremely resistant and, because of her 4/14 chromosome transposition, he does not want us to be overly optimisitic.  She’s had Velcade (VDD) chemo treatments last summer, a Melphalan autologous stem cell transplant in September, radiation in December, and now, barely two months later, the cancer is back and aggressively advancing.  He said her time left could be in the range of “a couple of weeks to a couple of months.”  He says she will not leave the hospital to begin the Dexamethasone and Revlimid, and might not leave the hospital at all if the Revlimid does not work.

In one of my earliest blog posts from May 2009 titled “The Bomb“, the one where the local oncologist first informed us that Sue had multiple myeloma, I naively stated that “cancer’s cancer.”  A falser tautology has never been penned.  In the past ten months we have learned that there are better and worse cancers to have, and that , in the grander scale of things, multiple myeloma is one of the bad ones.  In the past ten months we have learned that the treatments for multiple myeloma have improved greatly, and that life expectancy for myeloma patients is going up.  We have followed the blogs of lots of “survivors” of multiple myeloma who are years past their diagnosis.  We have also followed the blogs of several myeloma patients who succumbed to the cancer.  We are not giving up the fight just yet, but it’s looking like Sue will pull the three year post-diagnosis survival median down.

But also in the past ten months we have acutely tuned in to another lesson not specifically tied to the cancer diagnosis.  People have asked, what’s Sue’s prognosis?  And both Sue and I have replied that her prognosis is the same as yours and mine: None of us know when our time is going to be up.  On the other hand, she now has a better fix on the answer to that question than you or I do, and in some ways she may be better off for it.

On the lighter side, they’ve given Sue a pair of “mittens” to wear while she’s sleeping so that she doesn’t pull out her feeding tube.  They’re more like boxing gloves than mittens.  In every hospital stay she’s always wanted her cell phone close at hand as a “life line” to her friends and family.  She’s sleeping now, with her right hand “mitten” placed on top of her cell phone in her lap.  The mittens are tightly velcroed at the wrist and, I swear, I don’t know how she could ever answer that phone or make a call or even call the nurse with the call button with those big mittens on.  Or press her PCA button for pain medication activation.  On second thought, it isn’t the lighter side.  It’s another sad page in a sad chapter of an otherwise really good and upbeat book.

Temporary Home

It’s dangerous to listen to country music when you are emotionally on the edge.  I’ve spent the past week thinking my wife is dying and bottling up all the emotions that go with that.  Yesterday I was driving to work, which, since the core of my property management business is to collect rent from about 600 tenants every month, the only way I can imagine not going to work on the 5th of the month is if Sue actually did die on or around that day.  She didn’t die yesterday, and last night I switched back over to the other side, and now I think she isn’t going to die anytime soon.  But more about that later.  I’ve already told you, this blog is about me.

So I was driving to work and listening to country music, and this Carrie Underwood song comes on the radio called Temporary Home (click the link to hear the song), and the tears started to flow a bit.  The song is co-written by Carrie Underwood, Robert Laird,  and Zac Maloy, and the words go like this:

Little boy, 6 years old

A little too used to bein’ alone
Another new mom and dad,another school
Another house that’ll never be home
When people ask him how he likes this place
He looks up and says with a smile upon his face

“This is my temporary home
It’s not where I belong
Windows and rooms that I’m passin’ through
This is just a stop, on the way to where I’m going
I’m not afraid because I know this is my
Temporary Home.”

Young mom on her own
She needs a little help got nowhere to go
She’s lookin’ for a job, lookin’ for a way out
Because a half-way house will never be a home
At night she whispers to her baby girl
Someday we’ll find a place here in this world

“This is our temporary home
It’s not where we belong
Windows and rooms that we’re passin’ through
This is just a stop, on the way to where we’re going
I’m not afraid because I know this is our
Temporary Home.”

Old man, hospital bed
The room is filled with people he loves
And he whispers don’t cry for me
I’ll see you all someday
He looks up and says “I can see God’s face”

“This is my temporary Home
It’s not where I belong
Windows and rooms that I’m passin’ through
This was just a stop,on the way To where I’m going
I’m not afraid because I know this was
My temporary home.”

This is our temporary home

And if that song doesn’t cause you to tear up a bit, maybe you have a heart made of stone.  But anyhow, back to Sue.  Something was different last night, and I can’t quite put my finger on it.  It’s almost like a corner was turned, but seeing the difference from yesterday to today might be like sitting outside and watching your grass grow. 

She’s still sick and has all the symptons described in my blog of yesterday.  Plus she has the bad habit of pulling out her feeding tube, which she’s done three times already.  In her defense she does it while sleeping and drugged up.  I joked to Mark W. last night (we were in the room with Sue and her sense of humor is very good — for example she accused Mark of only stopping by to visit with me)  that Sue is trying to commit suicide by x-ray.  (You’ve heard of suicide by cop where the person wants the cops to shoot him?  Well, they seem to think they have to x-ray the tube every time they insert it to be sure it’s in the stomach.  She’s been x-rayed for the feeding tube insertion four times now.  However, I heard from Debbie F, an R.N. of old (or is she just an old R.N.?)  who said that, back in the old days, they used to insert these tubes all the time without an x-ray and they could tell it was in the right place without an x-ray by forcing air into the tube and listening.)

So maybe the hospital is just a temporary home for Sue until she comes home to the temporary home where we currently live.  But anyway, I’m temporarily going out of the predicting business.

P.S.  I have ultimate respect for police officers, and only use the term “cop” because the phrase “suicide by cop” is now in common usage.  I used to adhere to the “copper badge” theory as the probable derivation of the term “cop.”  However, I just now discovered (on the internet, the ultimate purveyor of truth) that the “copper badge” theory probably is a myth.  Click here for the latest on the derivation of the term “cop.”

On A Clear Day

Yesterday it rained hard in the San Joaquin Valley of California, and snowed hard in the Sierra Nevada Mountains just a few miles to the east. I left the hospital around midnight and the clouds had cleared by then, leaving a cold clear night (well, o.k., 41 F is cold for Californians). Cold clear nights after heavy rains yield stellar stellar views.

The pain medication Sue is on, Dilaudid, is powerful stuff. I’ve heard it’s about ten times stronger than regular morphine. It clears up the pain (or does it occlude it?), but simultaneously clouds the brain. Sue had a number of halucinations last night which she called periodically to report to me. I came back down at about 3:30 a.m. to sit with her and woke up at 6 a.m. to the most gorgeous, clear view out Sue’s third floor window of the snow-capped Sierra Nevadas framed by a cloudless morning-blue sky. 50 miles to the west the coastal mountains were also clearly visible.

The clouds moved back in early in the morning though, and the exceptionally clear view was reduced to a memory. If you ever wanted to paint this landscape as it should be — at it’s best — that picture of rain-fresh cloudless clarity would be it. It isn’t often, or long, that things are presented at their picture-perfect best.

Sue had a pretty good slew of guests today: Lots of friends came by. Cindy W. was the first, at 8:30 a.m. and Jenny A. was the last at a few minutes after 10 p.m.; Two of her pastors stopped by at different times; Several chaplains popped in; A hospital dog — a labrador — came by with it’s handler; both of our daughters spent time with Sue; and several hospice workers stopped to visit and provide information. One visitor, the infamous “singing chaplain” — i.e. Tim S. from North Fresno M.B. Church, sang Sue the hymn of her choice.

Sue’s sleeping solidly now. She’s tired and her throat hurts. She’s got a tube stuck into her nose and down her throat into her stomach so that she can have a TPN, which is a way of dripping nutrition into people who can’t take food or liquid by mouth. So her current situation is that she is more or less immobile, her throat isn’t working right, she’s in a lot of pain for which she is getting a lot of Dilaudid, which causes her to have an unclear mind with periodic halucinations, and she can’t eat. And she has no answers to the what or why or how long.

It’s rather a bleak situation when you add it all up. For sure Sue’s not at her picture-perfect best. Like the clear view of the mountains this morning, that’s a memory. Remarkably, though, she has a smile for every visitor, and a gladness and humor you’d expect to find only in people without any of her myriad, legitimate reasons to complain.

Home…for now

We got back from Chicago this afternoon after spending one more day there then we had planned. Originally my sister and I were both to get a battery of tests on Wednesday. We drove up Tuesday evening, and then spent all day Wednesday. Fortunately we drove separately. Her tests were completed by 3:00 or so. On the other hand my were not only not completed, some had to be put off until today. So as my sister and her husband drove back o Louisville, we had to drive back to the hotel we had checked out of Wednesday morning and get another room. On the bright side, the tests were completed, and we were told that barring any odd results the transplant should happen within four weeks. So it really looks like I’ll be spending Holy Week, the Triduum and Easter in the hospital. Hey, why not? What better way to celebrate the Resurrection than to get the gift of a new chance at life. We go back to Chicago on St. Patrick’s Day to see the Dr. and get the test results. Hopefully the date for the transplant will be set then. Maybe we’ll have the luck of the Irish!
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.
Deacon John
Feast of St. Casimir
March 4, 2010

Personalized Cancer Vaccines

This story is very encouraging.  CNN.com ran a story about brain cancer vaccines. Unlike traditional vaccines, these are not given to people prior to developing a disease, but after patients have developed brain cancer. In a nutshell, doctors create a personalized vaccine based on the DNA fingerprint of an individual’s cells. This allows the immune system to differentiate between healthy and “intruder” cells, and causes them to attack. Much like a smart bomb, the body can deliver a very precise assault on the cancer cells.  Although this therapy is only effective in 40% of cancer patients whose cancer cells produce a certain protein, it is very promising therapy. The article does state these trials are ongoing and the long-term effectiveness of the vaccine is still being studied. Similar vaccines are also being studied for use with prostate cancer patients. For more information, check the following link for the article and video.

Since myeloma cells also produce a specific protein, perhaps this type of therapy could also be developed for MM patients, not to mention for just about every cancer. This is a very promising and encouraging therapy. Hell, I might just make it to my retirement after all.