Too Much To Ask

A few days ago, and barely a few hours before the medical consultation from Hell described in James' post (where is my daughter who knows everyting about apostrophes when I need her?), Pam and Greg and I were sitting in the hospital scene pictured near this post. I'd been downstairs and brought back a couple of lattes and muffins, and we had settled in with the newspaper, quietly determined to superimpose a normal day on top of what is after all a pretty surreal scene. Greg and Pam were doing a math puzzle and I was interrupting them by reading aloud favorite turns of phrase from Times auto Critic Dan Niel's column.

Somehow the subject turned to Marie Curie and Herr Doktor Roentgen (our minds are much taken up with radiation these days), and how they absolutely had to do science. Next, Spanish poet Garcia Lorca popped up, and from him other artists who were simply compelled to do their art. We who share Greg's guitar-centric world differ only in degree--we simply must play the guitar, whether we are great players or not. It is part of our very humanity. There are also medical scientist/artists whose determination can help us so much. I suppose we really cannot ask that as well as amazing powers of memory and deduction, alchemy and manual delicacy, they also have perfect emotional sense, diplomacy and tact.

Thank you, Britta!

Most if not all of us take the simple, wonderful things in life for granted. I have proof: when was the last time you cherished every minute of breakfast? After dad and I got out of the hospital today, the first thing we did was go to dad's favorite place... Britta's Cafe.

For those of you not in the know, Britta's is one of those few places where service still rules and the food is excellent. My wife Motomi and I took dad there a couple months ago for Sunday Brunch.. dad simply loved it... we had no idea then that we had started a family tradition. One dish in particular really stands out for dad with his medication-restricted tastebuds: Britta's French Toast. It's not just a breakfast.. it's about 30 minutes of pure bliss for dad in a day filled with countless challenges and often much pain.

After being released from the hospital this morning, dad and I arrived at Britta's today at 2PM, three hours past the end of breakfast and the french toast on the menu. It was nearly empty following lunchtime.. Britta and our waitress were in the back near the kitchen. Our waitress seated us. Dad said something to the effect of "I know it's late, but can you possible still..." and the waitress gently interjected, "Britta saw you walk in, and she wanted me to tell you that the kitchen will make you the French Toast." Dad looked up at our waitress with the widest smile, looking almost like he was going to cry.

The rest of the meal was great. Pam, Greg & Margie joined us, and I'm so glad we had this time together to enjoy a moment after a trying week.

Something as simple as a French Toast breakfast could certainly have fallen outside the bounds of 'daily business operations'. But it didn't today. Thank you, Britta, for your part in making this day beautiful.

A greeting from the Maestro

I think that James' "Dammit Jim" post is a good update. Let me say "thanks" once again for all the help and support.

It's not getting any easier for any of us, I realize that. Please know that I feel your caring thoughts, and in the middle of a terrifying night, I am comforted. Do you know that then I turn to God and to you? I think of our times together, as family, as teacher, as student, as friend; I re-live the good times and am thankful that we got through tears together if we had to.

Well, I played guitar today. Improvised a little throw-away piece for a while and then moved on to Tarrega gems; Adelita!, Lagrima, and the Muzurka in G. My father's guitar teacher once told me, "Gregory, you can spend your whole life getting better at playing Adelita!." He was so right. Then I moved on to the Courant from the third 'cello suite by J.S. Bach. Too much. Could't quite make it. Tomorow I hope.

Please send me a card, snail mail, comment on this blog, a phone call. I love you all.

Gregory

'Dammit Jim, I'm a doctor not a bartender!'

This Tuesday dad was admitted to the hospital right after a routine visit. Dad's primary physician, Dr. Jeff Weber, followed the pain clues and a subsequent MRI scan to reveal a tumor pressing sharply against the spinal cord. This threat is serious- pressure on the spinal cord can cause anything up to and including paralysis, loss of bodily control, and more. And it can happen fast.

Only two options really exist for this situation- radiation or neurosurgery followed by radiation. The latter is a risky and dangerous option that doesn't guarantee any results. According to one doctor here, in a clinical trial involving 100 patients with similar tumors where 50 received surgery and radition and the other 50 only received radiation, there was virtually no difference in survival rate or length of survival after treatment.

The doctors decided to utilize extremely strong, sharply focused radiation to beat the tumor back, shrinking it so as to relieve the pressure against the spine. We just finished the third radiation session a couple hours ago [just to satisfy you comic book junkies- dad hasn't manifested any super powers yet, but he has several more radiation sessions to go].

So right after admission, at least a dozen different doctors, nurses and medical students all come into the room at different times. Most of them asked the same 1-2 dozen questions ("can you feel your feet?" "are you numb anywhere?" "how are your reflexes?") then proceeded to run dad through a series of reflex tests (kindof like the one where they tap your kneecap with a ballpeen hammer, only various and different). The general consensus was a) this guy is a seriously tough dude to be walking around in so much pain, b) he's got complete functionality of his body, c) he's strong as a horse, all things considered and d) man, can this guy play guitar or what. The docs said radiation makes the most sense, no surgery at this time.

So the next day (yesterday), in walks a neurosurgeon that apparently had not consulted with dad's primary doc and begins to describe in all the gory detail what the surgery would be like, cutting into this, through that, from both sides, etc. He even states that once the surgery is completed, anything could still go [horribly] wrong. Then he states more or less that he hopes dad does not need his services. OK, so dad's sitting there, pretty much horrified and agast. What was this guy thinking?

After this guy leaves, you can imagine the state of mind dad was in. All of the doctors, nurses and staff to follow found a patient who had been shocked into the most severly negative state of mind, and for good reason. It took Dr. Weber and a few other doctors and nurses some time and energy to get dad back into shape again. All because this other doctor didn't say "I'm going to get a little graphic on you, because it's my job to do so. Are you ready?" before beginning.

That doctor's been since described as suffering from a congenital lack of bedside manner (Think of Bones on the original Enterprise, only Vulcan instead of Human). The lesson learned here is that one of the challenges a patient must face when battling a disease can be the personality of a left-brained, well-educated and superbly trained doctor on whom one relies for survival. I am not angry at the doctor. It's his job to be honest and completely up front. I thank him and his colleagues every day for saving my dad's life.

Star of the Week July 17

This week's star is so obvious that those of you who know her will agree. Mary Barrus is not only my aunt :-) but everyone's aunt. She will champion your every dream and will support your every need. One of Greg's biggest fans for the last 24 years, she holds the record for buying the most copies of Greg's CD, Isla California, and I believe his CD Sarabande of the Distance, as well. In recent weeks she has:

--donated copies of Isla California to the music department of the central branch of the San Diego Public Library and the California State History Museum in Sacramento.

--raised the idea of petitioning UCI to grant Greg his master's degree based on conversations with a friend of hers who sits on the graduate admissions committee at UCSD. (James and I are pursuing this.)

--sent checks so generous that Greg can eat every Sunday morning (something he looks forward to all week) for months to come at his favorite cafés: Britta's and the Corner Bakery. She told us that by sending a "little" donation, it is her way of being present with us in spirit.

Mary, you're not just an extraordinary star but a real champion. Greg, James, Motomi, and I send our love and gratitude.

A treatment history

I am asked on a regular basis what treatment I am currently going through. Perhaps a summary would be helpful.

In February of 2003 I did a series of treatments which combined agents that stimulate the body's immune system, combined with chemotherapy agents that kill cancer cells. This is referred to as bio-chemo therapy. I then went on a program of Interleukin 2 injections at home from about May of 2003 To January of 2004. I was then administered an agent identified as MDX, a phase II trial, which did not work at all. In July of 2004 I was back in the hospital undergoing high dose treatments of Interleukin 2, with mixed success, but not enough success to continue the brutal treatment.
In September of 2004 I began visits to the Cancer Therapy and Research Center in San Antonio, Texas. I received an outpatient treatment of an experimental phase I trial drug identified as LBH-589. It stopped some tumor growth, but was so hard on me physically that I ended up in the hospital twice with pneumonia.
I then applied for an adoptive cell transfer treatment at the NCI in Washington, DC, but was turned down. That chewed up some time.
Next was an unsuccessful treatment based around taxoI, an FDA approved chemotherapy drug derived from the bark of the yew tree. This brings us up to date, as I have just finished a treatment with temodar and thalidomide that was not effective.
At this point we are looking for other options. Of course there are a few experimental drugs out there. It is just a matter of timing (that is, living long enough get past FDA approvals of trial drugs).

I want you to also know that diet, acupuncture, supplements, yoga, excercise and chiropractic have been a big help.

Some of my friends, as well as strangers, pray for miracles. We have had them already: I am still here, and able to give and receive love.

Gregory

star of the week 7/8

My heartfelt thanks to Margie Mirken. We found out many years ago that we are distantly related (her mother's maiden name was Coleman). As it turns out in this time of trouble, she has fulfilled every hope and dream that I could have for a loving and supportive family member. This week she accompanied my son James and I (actually she drove as well) to a critical visit with my physician, Dr. Weber. She held James and I up, as the going was very tough. She and her husband Greg have been there from the beginning of this "adventure" in so many ways. She has cleaned my house, been a spiritual counselor, cooked what meals I have been able to keep down, taken me into their home, even physically kept me from passing out during the worst of the chemotherapy side effects.
I have really learned what family means through Margie. Thank you.

Gregory

Star of the Week July 1

What can you say about someone who is available 24/7 to drive over and give physical therapy to Greg's back and shoulders? Should we all be so lucky! Dr. Michael Valentine has the touch to relieve muscle and tumor pain for just long enough to make a difference in Greg's day. Mike is also the brilliant idea man and driving force behind the Gregory Coleman music library over in the Fine Arts building at Saddleback College.

Consistently, Mike is always nearby to give comfort and demonstrate the meaning of compassion. All of us thank you!