Setback

A few days ago I mentioned my back situation and said I'd fill in details later. It's time to fulfill that promise. I didn't have my first treatment today after all, and the reason is directly related to the back issues.

About a week before I left Lubbock, I developed some lower back pains. Those got steadily worse and eventually shifted around to my right side, belt-level. This side pain seemed to be in the muscle, and it ranged from uncomfortable to terribly painful. I told Dr. Bush about it, and he ordered a bone scan because, if prostate cancer migrates from the gland, it likes to settle in the bones. The bone scan showed up an abnormality in the lower spine, but it was unclear enough that they ordered an MRI which I had yesterday. These two procedures—the bone scan and MRI—were exceedingly painful, because one thing that exacerbates the pain is lying on my back, and of course, in both procedures, I had to lie on my back, very still, for upwards of half an hour. Excruciating. Like a fire burning in my side.

Today, just as I was preparing to leave for my first proton treatment, Dr. Bush's resident, Dr. Kang, called with a report on the MRI. He said that the degeneration in the lower back appeared to be nothing more than arthritis, and that the muscles seemed inflamed—no doubt the cause for the pain; he said there is little or no chance the muscle pain is related to the prostate cancer. However, he said that the bone scan had also shown an abnormality higher up on the spine, about mid-back level. He said the radiologist team would study that image further and discuss it. If they decide it looks suspicious, they may order a needle biopsy to check it out. If it turns out to be malignant, my treatment plan would need to be changed to include hormone therapy. Therefore, the start of my treatments need to be delayed until this matter is settled. They're unlikely to get back to me until early next week, so for now, I should just hang out and wait. I asked if it wasn't highly unlikely that my cancer, which appears to be small, non-aggressive, and limited to the prostate, would have metastasized, and he agreed that it was unlikely but also said it is possible.

I'm deeply disturbed by this turn of events. The best-case scenario would be if the docs, getting their heads together, decided the spot in question was nothing after all. In this case, I'm guessing my proton treatments could get going a week from now; another week away from home, but still a completion date before Christmas. A worse scenario would be the needle biopsy which just sounds real unpleasant, and even if the sample turned out benign, the process would further delay my start date. The really frightening possibility would be if it turned out to be malignant. From what I understand, the prognosis for bone cancer is never good and the condition becomes very painful before the end.

I've been very hopeful about this whole process, encouraged by reports from many patients and graduates of the program who refer to it in terms such as a "proton vacation." But now, these expectations, which seemed so clear, so simple, so under control—now they give way to unpredictability. That in itself is unsettling. And the possibility of a much more severe cancer is really frightening.

I debated whether or not to include this development in the blog. But then I remembered telling someone that the blog was sort of the public invasion of my own privacy, and I also decided it would be pretty dishonest to just share the fun, warm, and fuzzy parts while hiding the terror. So here it is.

And so I'll hang out and wait. The good news in this respect is that—what with all the bone scans, MRIs, orientations, etc.—I'm just barely keeping up with my classes. Maybe I can catch up in the next few days. And if I get caught up enough, there's a lot to see and do around here. For instance, the L.A. County Fair, the great granddaddy of all county fairs, is on this week over in Pomona, ending Sunday, so maybe I can get over to take it in.

Many have offered their good thoughts and prayers. Right now, I can use them all.

Orientation

This morning I attended an orientation session for new proton patients. There were 7 in our group, most with spouses sitting in. Besides myself there was a woman from Vancouver, CN, doing follow-up treatment after surgery to remove a brain tumor, another woman from Las Vegas getting treatment for breast cancer, and 4 male prostate cancer patients from Lower Lake, CA, Cloverdale, OR, Seattle, WA, and Munich, Germany.

Patti, from Patient Services, gave us each a folder holding a 7/8 inch stack of papers about various features of LLUMC, the Inland Empire, and Southern California in general. Yes, I measured the stack. The papers covered everything from the presence of rattle snakes in the area (with a handout about Jim Bush's nephew Sean Bush, Dr. Venom) to a flier about the Restaurant Tour which takes place every Thursday evening in which a group of proton patients visits a different area restaurant. At the end of her presentation, Patti warned us that some of us will become so busy with all these activities, we may forget to show up for our treatments. She suggested we should avoid that course of action.

Here are some facts she gave us:

• 66% of the proton patients at LLUMC are being treated for prostate cancer. 44 other cancers are also treated here by proton beam. In addition, the Radiation Medicine department also treats via conventional photon radiation.
• LL University, which celebrates its centennial this year, is the largest medical college in California; aside from a department of religion, the university is entirely focused on medicine. (By the way, my Uncle Evan Bohen was the building inspector on a major expansion of LL Hospital back in the '60s or '70s.)
• LLUMC Radiation Medicine employs 120 people.
• Proton treatments are administered via 3 gantries. Gantry 1 is currently shut down for addition of robotic positioning equipment. I'll be treated in Gantry 3.
• Proton treatments are administered from 5:00 a.m. until midnight, Monday through Friday; on weekends, crews do maintenance. The unit is in operation of one kind or another almost 24/7. I've heard many patients say their treatments were routinely administered in the evening or at night. Not sure when mine will be.
• Radiation Medicine provides the services of a nutritionist (Stella) and a social worker (Mildred) to assist patients with their diets and emotional needs.
• Regularly scheduled support services for proton patients include a Tuesday evening potluck, a Wednesday afternoon patients-only support group, a Wednesday evening meeting for patients and supporters, a patients' supporters group, and the Thursday evening restaurant tour.
• In addition to treatments 5 days a week, each patient sees his (or her) doctor in clinic once a week. My doc, Dr. Bush (David, not Sean), is in clinic on Mondays.
• The town of Loma Linda has about 22,000 permanent residents. 40% of these residents are 7th Day Adventists. During the week, the population swells to nearly 60,000 with patients and students.
• Loma Linda itself has few services for residents. Among these, however, is Loma Linda Market, a vegetarian grocery store. But the town is immediately adjacent to Redlands to the east and San Bernardino to the north, both of which abound in restaurants and stores of all sorts. And Riverside, another sizable town, is just 10 minutes to the south west.

By the way: the picture. This is LLUMC. The graphic at the top of the tower on the left hand side of the picture is the logo for the Children's Hospital. The proton center occupies 2 floors underground beneath the Children's Hospital.

Tomorrow, Wednesday, September 30, I check in for my first treatment. Drum roll!

Trees

I'm amazed by the trees and other foliage here in Southern California. Every morning I sit out on my balcony and marvel at the trees here on the grounds. This picture is representative of what I get to see. There's such variety—pine and fir and other conifers, eucalyptus, trees with broad leaves, compound leaves, spear-head leaves, lobed leaves, trees with flowers and ones without, and of course the ubiquitous palm trees—but not just one kind of palm, palms of all sizes and varieties. Oh, and cacti. And then all sorts of shrubs and flowers. For instance, in the median of Barton Road, between my apartment and the Medical Center, there's a huge bird-of-paradise plant with dozens of orange-beaked blooms on it.

This area has its climate to thank for this abundance—semi tropical, semi arid, with very rare freezes and summer temperatures that rarely exceed 100 degrees.

Looking at this wealth this morning while I sipped my coffee and visited with Amy on the phone, I thought that maybe I should make an illustrated guidebook to the trees, shrubs, and flowers here at Loma Linda Springs. Then I realized that most residents probably wouldn't be interested in such a book. I don't think most Southern Californiños really see these flora. They're surrounded by them all the time, they take them for granted, and for most of them, the wealth of vegetation has ceased to exist. It takes someone fresh from the West Texas desert to really see and appreciate this part of the surroundings.

Maybe that's one good reason to do new things, travel to new places, meet new people. These changes can sharpen our perceptions, pique our awareness.

I wonder what parts of my life I'm just not seeing anymore because, wonderful as they may potentially be, they've become commonplace. I gotta pay more attention. I gotta stop and smell the roses. Or at least see the roses. I wonder how long it will be before I stop seeing the trees.

Journeys

I've traveled several roads that I'd like to revisit—not to get from Point A to Point B, but simply to experience the territory again. Bikers say, "It's not about the destination; it's about the journey." This saying is made for these roads—whether you're traveling via bike or cage (biker-speak for "car").

First among them: The Beartooth Highway that connects Red Lodge, Montana, with Silver Gate at the north east entrance to Yellowstone Park. Leaving Red Lodge, the road climbs by spectacular switchbacks right up the side of the Beartooth Mountains. The drive is not for faint-of-heart flat-landers. Once on top, you skim over highland meadows past icy lakes and wild ski areas. On every side the tops of mountain peaks spread to the horizon—a veritable sea of mountains. I've cross country skied on top there in June; much of the year the road's snowed closed.

Second is Texas Highway 170 that runs along the Rio Grande from Presidio south east to Terlingua and thence to Big Bend National Park. This road features magnificent views of the river and Mexico beyond as it curves and dips along the bank. The engineers decided not to build bridges on this road, so the pavement dives down into the arroyos that drain the desert into the Rio Grande, and then shoots back up the other side—a roller coaster the way God meant them to be. As a bonus, it takes you to Big Bend, easily the most beautiful spot in Texas, wild, rugged, and ferocious. I've traveled this road three times—once in a cage, once solo on my bike, and once through a full day of rain with Amy on the bike's passenger seat. I'd do it again in a minute. We could do without the rain.

Third is the road I traveled for the second time a week ago—US 60 from Show Low, Arizona, to Globe and on to Florence Junction. Descending the White Mountains, this road passes through the Fort Apache Reservation and Salt River Canyon. The pictures at the top of this post are from the south western end of this road, the desert portion. This stretch of US 60 combines the alpine aspects of the Beartooth with the desert features of TX 170, and even throws in the Salt River as an extra. The road's theme is variety. Since I was driving the road Sunday, it seemed only right to listen to Beethovin's 9th Symphony. What an unbelievable merging of music and spectacle! Beethovin seemed in synch with the road as his music swelled and then whispered and the scenery shifted from majestic mountains to desert stretches and back again to mountains. And as the mountains began to give way to the desert and the heat escalated, and the rest of Arizona and beyond that Loma Linda lay ahead, the Ode to Joy broke forth.

May the music and song be prophetic of the days to come—another journey. The destination's important, but I need to remember to absorb the journey along the way.

Seems to me a lot of people I know are so intent on life's destination that they fail to value the journey. "It ain't the destination," sez the Biker, "It's the journey that counts."

Pod 'n Balloon

OK. Time to get medical. After all, the blog is about treating prostate cancer.

This past Tuesday (9/22) I met Dr. David Bush, who will be overseeing my treatment, and his nurse, Gail. Also his resident Dr. Kang. They reviewed my records and the doctors did the traditional DRE (Digital Rectal Exam, for any very young males or females of any age who may not be familiar with the procedure). Dr. Bush has big fingers. Dr. Kang has nice, slender ones. (What's a good operation story without a few gory details?) Dr. Bush then went over the various possible ways to treat my cancer and, as expected, recommended proton radiation, which he went over in detail. I agreed with his advice. After all, I traveled 1000 miles to get this treatment, so duh!

Dr. Bush ordered a bone scan to check on my back pain (more about the back pain in a later post), and then they scheduled my pod building and CAT scan for the next day.

The Pod: This is a device that starts out as a 6 1/2 foot long section of PVC pipe about 16 inches in diameter that's been sliced in half lengthwise and then had its ends sealed. The techs had me lie down in this pipe and then poured foam insulation in from my waist to the soles of my feet until it was deep enough to come about half way up my legs. It got nice and warm. After it was set, I got out of it, and there was my pod. It will ensure that my body is in exactly the same position every time I enter the proton machine.

The Balloon: Next came the CAT scan that will be used by the computer to direct the proton beam so that it precisely targets my prostate every time.

But there was some prep. Dum dee dum dum!

When I had arrived, about half an hour before my pod building, I had been directed to drink 3 glasses of water. The aim was to fill my bladder so that it would exert a bit of pressure on the prostate and keep it stable, since the eager little gland tends to squirm around some. Now, 45 minutes later, my new pod was positioned to enter the CAT scan machine, and I got in again. But before my pod and I entered the machine, I met The Balloon. The techs inserted a balloon in my rectum and then filled it with water. Oh, yes. Many are the jokes about The Balloon in the proton community. In fact, the support group is called BOB—Brotherhood of the Balloon. The balloon serves two purposes: It keeps most of the rectum out of the line of fire of the proton beam, and along with the full bladder, it helps keep the prostate in the same location for all treatments. Well, I've had 3 biopsies (Want to hear about that experience? It involves a baton fitted with spring-loaded needles.) and innumerable DREs, and by comparison the balloon was scarcely noticeable. Good thing, because every one of my 45 treatments will involve 3 glasses of water and a balloon.

After all that excitement, I don't really remember the CAT scan. I guess they did it. I got dressed and reported to Level A where they gave me my start date: Wednesday, 9/30, at 4:00 in unit G3. I left.

I should have shot a picture of the pod. Will do so in the future. I'll have lots of opportunities. No, I'm not gonna share a picture of the balloon, so just forget it.

This entry has focussed on technicalities, but there were lots of people involved—receptionists, doctors, a nurse, technicians, and other patients in various stages of their own treatment. Everyone was supportive, sensitive, good humored, clearly interested in me not only as a subject but also as a person. That motto—To Make Man Whole—seems to be written not only on their logo but also to be inscribed in their hearts. I can't imagine being in better hands.

My living room with kitchen in background.

The view from my balcony.

Landscaping outside my apartment.

Digs

Today I moved into my home away from home.

Since arriving in California, I had been staying at Loma Linda Inn, a place that got a good recommendation from Dr. Sean Bush, a nephew of my friend and colleague Jim Bush. Jim had put me in contact with Sean—a guy I hope to meet while I'm out here. He's associated with LLUMC and is a world-class specialist in snake bites. Dr. Venom, I guess. Sounds like a really interesting guy.

Loma Linda Inn is a decent place with primary virtues of proximity to LLUMC and low cost. But the room was small and the situation oh-so-temporary, so I was glad to move into my place at Loma Linda Springs, a complex that advertises itself as Gracious Apartment living for people over 55. My apartment has 2 bedrooms—one that will serve as my office—is fully furnished, and comes with a garage, of all things. With luck and the blessings of the computer gods, I'll attach some pictures. The grounds are Southern-California beautiful, the staff is great, and the Springs hosts a weekly potluck dinner for prostate proton patients. It's about a mile from LLUMC.

Home away from home . . .

An important thing, home. I've known people whose families lived in the same village for centuries. I met a man and woman who said their home was on the sidewalk beside the library. I have a tat that includes words from Dillon's song "Rolling Stone"—No Direction Home. Some speak of dying as Going Home. Cross stitched mottos—Home Sweet Home. I read in the paper this morning that hundreds (thousands?) of victims of the New Orleans hurricane still don't have permanent homes. I've moved around enough in my life that I don't associate home with permanence. But home does speak to me of a certain kind of belonging, a certain level of sanctuary, a being at peace, a place where you don't have to be on your guard all the time. So it's nice to be in my new home away from home.

Prostate Cancer as a Cause for Thanksgiving

What better way to start a blog on prostate cancer than with a list of things I'm thankful for!

• I'm thankful that medical science is advanced enough that my cancer was detected in its early stages, not when it was too late to do any thing about it.
• I'm thankful that I got prostate cancer now, not 20 years ago when butchery was the only way to treat it.
• I'm thankful for the physicians at Loma Linda University Medical Center who pioneered proton beam radiation treatment of prostate and other cancers, and for proton beam therapy with its high success levels and its low incidence of negative side effects.
• I'm thankful that I have a career—teaching dramatic structure and playwriting—that can be taught temporarily from a remote location.
• I'm thankful that I have a boss that did everything in his power to make it possible for me to be off campus for 2 1/2 months. Thank you Fred!
• I'm thankful that I have colleagues who willingly, graciously, almost joyously took on extra work to cover my responsibilities in my absence. Thank you Linda, Dorothy, Bill, Jonathan, Melissa, Genevieve, Beth, John Poch, and more that I'm sure I'm forgetting right now!
• I'm thankful that I have students who not only adjusted to a different mode of learning, but also actively assisted in making my absence possible. Thank you especially Kyle and Orada!
• I'm thankful for a huge network of friends and acquaintances that have wished me well, promised to keep me in their thoughts and prayers, and repeatedly asked after my well-being. A few groups to mention in particular: My colleagues at Texas Tech, my Sunday school class and other parishioners at St. John's United Methodist, the Tuesday Night Life Drawing group, the Lubbock chapter of Bikers against Child Abuse, my FaceBook friends, and my brothers and sisters at Carpenter's Church and Family Promise. I didn't even know I had all these friends, but there they were, all the time.
• I'm thankful for the unbelievable beauty of the Southwestern terrain I crossed between West Texas and Southern California.
• I could go on and on, but I'll end with this—I'm especially thankful for a wonderful companion who has walked with me every step of this journey from the first diagnosis until now, who has put up with me when I've been stressed out, who helped me find Loma Linda, who makes me laugh, who supports and advises me, and who assures me we will whip this thing together and enjoy many happy years together in the future. Thank you, Amy! I love you!

Tomorrow: Details . . .