Friday, May 29, 2009
The meeting with Dr. Jahan today was sobering and more. All my tumors have grown in the past two months. One lung tumor is now over a centimeter across which means its size has effectively doubled since the last scan at the end of March. In addition, the spot on my liver which had been taken off the table as a problem is now back on the table at some 4.5 centimeters.
The short term good news is that I have a lot of quality of life and as of this week, not much discomfort. However, this will change and it will change sooner rather than later. There are no plans for immediate intervention with chemo or radiation. Dr. Jahan reasons that both palliative treatments would diminish my quality of life. Since I am not in pain, why superimpose a treatment when none is needed—yet. I have an appointment with Dr. Jahan at the end of the month to check in about my symptoms.
For mid-term treatment, we discussed chemo as the strongest possibility. Dr. Jahan favors Gemcitabine which is administered over a 90 minute clinic visit (and may be given with another chemo drug). There is a clinical trial program in Santa Monica as well as a program here at UCSF which we can investigate when it comes time to actually schedule appointments. As for radiation, it may be used, it may not be practical. To be determined.
Dr. Jahan repeated that pain is the issue I’ll be navigating. In the near term, the growth of the pelvic tumor may set off pain as it presses against surrounding tissue. In addition, we talked about making sure that I have a DNR (Do Not Resuscitate) order in his office and at home. His concern is that I will have a sudden emergency and the responding medics will do everything possible to keep me alive even though that’s not my wishes.
Biggest message along with the tumor growth is: Do the things you need to do to have peace. Take care of business. OK, I can do that.
With that encouragement, I am off to see the Mark Morris Dance Group perform the unforgettable L’Allegro, Il Penseroso ed Il Moderato. This will be a great counterbalance to the visit with Dr. Jahan.
Thursday, May 28, 2009
Tomorrow is my meeting with Dr. Jahan and I am both excited and calm. Really, there’s nothing to do other than show up. I’ve sent him questions in advance; he’s sent me some replies in advance. What remains is to read the scans, evaluate the growth—or not—of the tumors and discuss what happens next.
This is a big deal weekend for me with entertainment and dining. I have tickets for the Friday night and Sunday matinee performances of Mark Morris Dance Group’s L’Allegro, Il Penseroso ed Il Moderato. Poems by Milton, oratorio by Handel and choreography by Mark Morris. Back in the early 90’s, my friend Patrick Glennon saw this piece and said that it was the best dance he’d ever seen. At the time, I thought he was being really excessive. However, I remembered his enthusiasm so when it returned in the late 90’s I got a ticket. I was totally unprepared for the power and beauty of the dance, and I like the work so much that I have traveled to see it. Ann and I have gone to Chicago and Seattle for performances as well as seeing it as often as possible at Zellerbach in Berkeley. And after the Friday night performance, a late dinner at the Café at Chez Panisse—yummmmmmmm.
My friend Laura is visiting from Chicago to do some work at Stanford library and it will be great to catch up with her. We met not that long ago at the Optimum Health Institute. I'm going to dinner on Saturday night with people I worked with at the HIV Planning Council. Then, the matinee performance of L’Allegro on Sunday with dinner afterward at Sea Salt with my friend Adrienne. Since Adrienne lives most of the time in Mendocino, I don’t get to see her nearly often enough. Dance, food, visiting and so to bed.
Weaving through all of this entertainment will be the results of the scans. I’ll post what Dr. Jahan has to say as soon as I’m able to so that all of you will have a better idea of where my health is headed and the probable treatments. I am hoping to have a better sense of how treatments (or lack of them) will block my timing for the next few months. I’ve put most plans on hold other than a trip to Portland in early July. Until I have a better handle on my health, I have resisted booking a trip to China and other events that are best planned for sooner rather than later. When I am in discomfort, I worry about loosing my ability to walk comfortably or walk at all. If I go to China, it has to be while I’m still able to walk.
Sunday, May 24, 2009
I have heard from several people that as I move into more acceptance of having a cancer that will not be cured, that this sets off a crisis of how to support me in this new definition of my health. For one thing, it’s scary to know that someone you care about is facing a mortal illness. There’s understandable confusion about what to say. There’s a fear of saying the wrong thing.
As a hospice caregiver, I can relate. I have certainly walked into a patient’s room and said something that was, in retrospect, inappropriate. One blunder occurred when I visited a resident at Maitri after a two week hiatus and during that time he had declined considerably. As I walked into his room, I was so shocked at his depleted self that I squeaked, “Hey! You look great!” Neither of us was deceived. My point here is not that I can make mistakes too; rather, not knowing what to say or saying the wrong thing is not the end of the world. Trying to cover up my shock did not end our relationship. It was an awkward and moment that was easily forgiven.
More importantly, what we can do for each other—I’ll do this for you and you can do this for me—is simply witness each other in the time remaining. Here’s how my friend Ellen expressed it in an email that arrived yesterday. “It's humbling to think how best to companion you in these difficult days. How can I know your reality? I can't, and there is no "right" way to be and no right thing to say--so it is a privilege to be called your witness. To witness, to be present in silence, to speak soul to soul is a proper offering. I treasure your love.”
So, let’s move forward with the understanding that my illness is challenging not just physically for me, but emotionally for all of us. And that my friendship with each of you has a stability that’s developed over time.
I’ve heard back from Dr. Jahan about many of the questions that I addressed to him earlier in the week. I had thought that we’d go over the answers during my visit next Friday, May 29th, but no, I get previews. Here’s what we may discuss depending on what the scans have to say. Regarding my questions about medical treatments, Dr. Jahan wrote:
“The next chemo option is somewhat easier that the inpatient Ifos/Dox. Each cycle is administered over a 2 week period. Week 1/day 1 you receive gemcitabine over a 90 min (or so) period, the nothing else until week 2/day 1 when you receive gemcitabine again over 90 min and docetaxel over 1 hr. Week 3 you rest at home, and then week 4 becomes the new week 1 for cycle 2. The chemo is generally well tolerated, fatigue is the main effect that you will feel, but your blood counts will be affected also. We would try to do 3 full cycles (each 3 weeks), and then recheck scans. We generally expect up to a 40% chance of seeing some kind of shrinkage, but it is by no means a sure thing."
Since I have been going into work every day, I’ll have to find out more about what “rest at home …” means to the typical patient.
Regarding pain management, he wrote: "You can increase your breakthrough morphine (2 pills or 30 mg every 2-4 hrs as needed), I plan to have you see the Symptom Management Group at UCSF Mount Zion (Dr. Rabow and his group—they’re wonderful). They can help fine tune your regime further, if that's ok with you.)"
Again, the next treatment options depend on the results of the scans. The pain management issues apply regardless of tumor growth.
Saturday, May 23, 2009
Then, my capacity to enjoy the art work started to plummet. By the time we were in the monumental Chinese statuary gallery, I could barely look at the artwork. I told Ellen that I was in a lot of pain and had to fast forward our tour. She understood. On the way down to the museum restaurant for lunch, we stopped to look at some porcelain in lucite cases flanking the grand staircase. At the far end of the open gallery surrounding the stairs, we found a comfy couch and sat down. As I relaxed into the cushions, the pain surged and I started to weep. I have been in the new Asian museum thirty or forty times, but never with such overwhelming pain. In that moment, surrounded by beautiful architecture and held by a close friend, I felt helpless, sad to be so diminished and totally overwhelmed. Those moments on that couch defined for me how far my illness has taken me into out-of-control moments. Lunch was a rushed event for me. In spite of my feeling that all time with Ellen is precious, I desperately wanted to be home, in bed, asleep. So that’s what I did as quickly as possible.
It surprised me that when I did get home, and got into bed and slept my sleep was not the usual hour long nap. I slept for several hours and had to force myself to get up and have dinner. It felt like one of the days following my discharge from chemo: my two dominant sensations were nausea and exhaustion. For the past few months, fatigue has been a daily and manageable event: when I’m tired, I nap, usually in the afternoon. But nausea has not been a part of my life since mid-January.
Friday, I awoke groggy and stupefied after an excess of sleep. Staying in bed was not an option because I was scheduled to get my latest CT scans at UCSF. I had asked to be scanned five weeks earlier than planned, because I felt physically uncomfortable. I didn’t want to miss getting some actual pictures of the tumor and measures of it’s growth.
Let me say that through the past several weeks when I have been uncomfortable and have felt like my tumor was growing, I haven’t REALLY known if that is the case or not. As I’ve remarked before, back at the end of March when I was scanned, I knew that the tumor had grown and I was wrong. It had not grown at all. But what I experience in my body is a strong sense that the cancer is getting larger because the pressure from the tumor hurts more. That daily, physical pain makes me anxious. My anxiety causes me to try to assess what’s going on and what I can do to manage that. I am looking forward to seeing Dr. Jahan next Friday, May 29th for the best of reasons: he will read the scans and we can plan the next steps in my treatment.
After going on and on about pain, not knowing, etc. let me say that well over half of my conscious time I am comfortable and not aware of the tumor. That’s important: I am not aware of pain most of the time. Additionally, I have been lucid through most of my illness. I can analyze computer applications at work and propose effective solutions to problems. I continue to read a lot—reasonably dense magazines as well as books. I can retain my concentration and remember what I’ve read.
Recently, however, I have largely lost my ability to meditate. This started in earnest about a month ago. Remember the healing center where I would lie on the warm marble slab and receive healing visits from animal, vegetable and mineral spirits? I have lost the ability to get into my healing center. I just can’t keep my awareness focused. I forget where I am, and my concentration doesn’t move forward. It reminds me of when I couldn’t listen to music last October and November. Music was so irritating and confusing that I stopped listening. Then, over a period of a couple or three weeks, my ability to listen and enjoy returned full force. Now, my hearing feels as rich and nuanced as ever. I hope that my ability to meditate returns as well.
In the past couple of weeks, I had asked my primary care physician about how to manage intermittent pain, and she suggested trying oxycodon. On the way to the scans, I picked up my prescription for oxy to use for pain breakthrough on an as-needed basis. After the scans were over and I had left work, I returned home and took my first oxycodon pill to relieve the pain I was feeling. From the moment I swallowed the oxycodon until mid-morning the next day, I was in an altered state of too-much-drugs. Mostly, I slept. But as my sleep continued across the hours of the evening and night, I also became groggy with sleep. When I awoke this morning, I could not get out of bed. Fortunately, my friend Philp had called me twice during the week to figure out when we could get together. I called him back and we agreed to visit this afternoon. With a visitor coming over, I knew that I’d have to get up. So I did. The rest of today—it’s now 4:00 in the afternoon—has been OK. No pain. No nausea. No exhaustion. I will take a nap in a few minutes, but I have felt lucid and pain free for most of the day.
I have to say, this is a demanding time for me. I don’t really know what’s going on inside my body. One of my biggest resources—meditating—has gone into recess. I am fearful that my tumor is growing and that I will die from this illness. All this interspersed with normal life where I look good, have a nice head of curly hair, have to shave daily again, can take on new projects at work and do well, am eagerly listening to new Handel operas (as well as enjoying the musical repertory of my last forty-five years), look forward to seeing friends for coffee, lunch and/or dinner, and generally continue the life that I have built for myself here in San Francisco. It’s all of the above—apprehension and functional behavior—every day.
Thursday, May 21, 2009
I’ve gathered my questions into clusters and sent the first batch to Dr. Jahan. If the scans indicate tumor growth, then we can use these questions as a starting point to talk about my next treatments. If the tumors are not growing, then I have a pain management issue. We’ll find out in a little more than a week.
Here are the questions that I’ve sent to Dr. Jahan:
- What are alternate treatments to the five day regimen of Ifosfomide and Doxyrubicin?
- What are the high-level overviews of each treatment (how administered, duration of treatment, side effects, effectiveness of treatment, other key statistics)
- What is the best next step given my current tumor size and growth from last scan?
Pain Management options:
- What is a good supplement to my current 150 mcg of Fentanyl for breakthrough pain management? At this time, I have 15mgs of Morphine Sulphate tablets for breakthrough medication. One pill doesn't do much to relieve pain. Should I try using Percoset? Note: I have also sent this question to my primary care physician, Lisa Capaldini, for her consideration.
- My ideal breakthrough medication would (1) kick in within an hour (2) remove most pain without making me too groggy (3) start to ease off after 3 to 5 hours.
Impact of the Growing Pelvic Tumor:
- If the tumor continues to grow, how will this impact my ability to walk?
What will be affected? The muscle in my leg that the tumor has grown into? The size of the tumor that may affect my ability to move my leg?
- What happens to people with tumors that grow in the pelvis? Do they become wheelchair-dependent?
- What’s the long term impact on my ability to urinate and have bowel movements?
Impact of the Lung Tumors:
- What is the status of the spots on the lungs?
- My understanding is that these lung tumors would be my cause of death since the lungs are a vital organ whereas the pelvic tumor is not likely to kill me. Is this correct?
- What is the prognosis for the lung spots?
And then we'll put the answers to these question together to get a sense of how much longer I can expect to live. This will be a guess, of course. However, it's an important estimate because I can start planning my life with more probability. Until now, my basic assumption has been that I'll get better so life can continue per usual. I no longer believe that to be true.
Wednesday, May 13, 2009
I’m acutely aware of not knowing what will happen next. But that doesn’t mean that I don’t want to surmise or plan or make guesstimates. After all, one of my professional roles is to manage projects, and I see my health care as a project. Also, it's the time of year when I start ordering tickets for 2009 and 2010 local performances. Will I go to SF Opera next year? What about the ballet season? Should I get tickets for Mark Morris's The Hard Nut during the holidays? How much future can I image for myself? I need more information so that I’m not prey to the worst case scenarios of my fertile imagination. With that in mind, I wrote to Dr. Jahan this morning to set the tone for our next meeting. Here’s the letter:
When I last saw you on April 1st, you gave me the happy news that my pelvic sarcoma and the spots on my lungs had not budged in growth. We agreed to have me get a new set of scans on July 6th and then I would see you shortly afterward to read the results.
I am writing to say that I don’t have any specific health emergencies, but I am experiencing a serious degrading of overall comfort and ease. It feels to me like the pelvic tumor has grown and it’s now more uncomfortable. In the last month, I’ve adjusted my medication somewhat: I went from 100 mcg of Fentanyl to 150 mcg in mid-April and then, briefly, up to 200 mcg at the end of April. 200 mcg proved to be too much; I was woozy and exhausted so I dropped back to 150 mcg and am pretty comfortable at that level now.
My need for sleep has skyrocketed and I now sleep nine to ten hours a night plus an hour or two of afternoon nap. Perhaps this is normal for a person who has this many opiates in their system, but it is a new experience for me. It would be good to get more information on what’s “normal.”
I still go to work every day, and that continues to be a gift in my life. I can concentrate, be effective, not forget things, and I love the interaction with my colleagues.
However, in the past few days, I have been haunted by the probability that I am not getting better. It sure doesn’t feel like my tumor is going away. So I am checking in with you to ask, “Should we do the scans earlier?” If the tumor is moving and it feels like it is, then I want to know that sooner rather than later.
As a result of not feeling better, a host of questions have started to assert themselves about where this tumor goes. Does it just keep growing? Will this compromise my mobility? It would be good to have a better view into the future and that’s not something I can conjure because I have no background in what tumors do.
It would be helpful for me to see you before the scheduled scans in July. I’d be happy to organize my thoughts into a list of questions that I send to you in advance. That way, you could address my concerns.
Thanks for all your help with this,
It’s time to find out more about what’s going on in my body and what can be done to manage the tumor. I’ll keep you posted as I hear more.
Monday, May 11, 2009
I woke up on Friday morning with the overriding thought that I needed to reconsider owning my property in Sonoma. I haven’t been up there much since I’ve been ill, and in the last month, I’ve rented out the house. But the underlying urgency was that I need to decide what to do about the place because I am not getting any better. That thought was a shock to me: “I am not getting any better.” In many ways, it had the force of a new idea. New, because the last time I talked with Dr. Jahan, he said that I was not getting worse. The tumor had not grown. Nor had it shrunk. So where did this idea come from that I am not getting better? It was my own experience of living in my body, feeling the coming and going of pain, becoming convinced that the tumor was growing.
This has been a problem for me throughout my illness: I go through periods where I become convinced that the tumor is growing. For one thing, I can touch it and estimate its change in size. Also, I have a history of being wrong about this growth. The last time I was scanned, I was certain that the tumor had become much larger whereas it had not budged.
So, off to work on Friday including a cup of coffee with my friends Sheila and Maureen who I know from working at Wells Fargo. We were having a fine visit, when I brought up my conclusion that I am not getting better; that it’s just a matter of time before the tumor really takes over. All of us were shocked, followed by tears and fervent wishes that it weren’t so. From that point on through most of the weekend, I returned to that thought over and over. I am not getting better; my tumor is growing and I will die from this.
Saturday, I had tickets to the Met broadcast of La Cenerentola in Santa Rosa and I had been looking forward to the performance for almost a year. There were two newer singers—Lawrence Brownlee the tenor and Elina Garanca the mezzo—who I really wanted to hear. As I drove North to Sonoma, I was shocked at my dual awareness. It was as if I was both alive and about to depart life. I looked at the rich countryside in the early morning sun as if I would never see it again. I wondered if I would ever drive to Sonoma again. Really, it felt delusional except I didn’t seem to be forcing this awareness, it simply appeared unbidden and disturbing. As I started driving into wine country, I began to seriously plan a goodbye party that I would get to attend. I've avoided having parties for a lot of people even though I know a lot of people. For once, it would be a treat to get everyone together and thank them while I still had mobility and coherence. Yes, a party and it had better happen soon.
A shock of driving to Sonoma was that it really hurt to be sitting in the car. The area around the tumor felt sore from the minute I sat down. But, I am a determined opera goer, so I completed the trip. Then, for three and a half hours, I had the joyous experience of watching a well known opera performed by two dazzling new singers who hopefully would have long, exciting careers. I felt totally engaged inside the theatre. Afterward, I reflected on all this fresh talent that had so generously entertained me, grateful to know that life would go on. I knew that. The poignancy was that I could barely imagine going along with it.
Then, off to the house in Glen Ellen, where I talked with Ann about my concerns. She listened, and said that this was something she had certainly thought of, although it was no pleasure to hear this confirmed. It was a beautiful day, but I became increasingly agitated and jittery. I didn’t want to garden. I looked at how the person living in my house had arranged the place to suit her. I could scarcely remember that I used to live there. I felt cranky, disoriented, unable to connect with being on the property. Finally, I took a short nap and drove back to San Francisco.
Once home, I felt both safe enough to become even more distraught. I had no idea I would die this soon. With a regular cadence, I kept hearing, “You’re going to die. You’re going to die.” It felt like I had never had this thought before and truthfully, I had never been able to hold onto this thought for such a sustained time. I spent the evening weeping, blowing my nose, unable to concentrate. Then, I slept for about twelve hours. Sunday was more of same: “You’re going to die. You’re going to die.”
I'm not anxious about what happens after death because I have a lot of faith that life continues with a great deal of purpose and clarity. For me, the shock of confronting my death involves having to change gears and wrap up my worldly business rather than keep going in my usual patterns and habits. Of course I can do all the necessary arranging; I’m an organized guy. Property can be turned over, furniture can be given away. I am well rehearsed in saying goodbye to people. Should I have a farewell party? Would I be in a wheelchair by then? Many of my new decisions would be about not buying into the future. No more opera tickets. By mid-Sunday, I had renounced my trip to China since there probably wasn’t time to buy a ticket and go.
Sunday evening, my friend Ellen called and then Lorenzo, and by the time I had finished talking with both of them, I had come in for a landing. I could remember what I went through, but the constant reminder of my mortality was quiet. I remembered the stillness I used to experience after completing a psychedelic trip; this quietness was similar although I wasn’t as exhausted yesterday. LSD and mushrooms were more physically taxing.
What to say about all this? Today, I went to work and remembered what I had experienced and endured. I could remember it well, although I didn’t emotionally connect with the painful urgency of facing my death. It was as if it had happened a while ago rather than yesterday.
As I said to people over the course of the weekend, “I’d love to be wrong about this.” Today, I realize as a person with an unhealed cancer that it’s expected to have these feelings now and again. I can’t say that I regret the experience because it woke me up to possibilities that I haven’t spent much time considering. And I wouldn’t want to live in this awareness all the time.
Thursday, May 7, 2009
After talking with my therapist, it became clear that I need more information about pain management. So far, I have been relying on medication to do the heavy lifting, and I seem to be at the far edge of that strategy. So, what to do? That’s what I could find out in a pain clinic.
After much discomfort, I took off one of my 100 mcg patches and applied a 50 mcg dose. So today I am back to the 150 amount and feeling better for it. Today, I feel almost normal. However, I am still shaken by recently pitching so far into the zone of pain alternating with over-doped.
Tuesday, May 5, 2009
So much to write about that’s happened in the past few weeks. I had a visit from Lorenzo in Seattle which was wonderful and led me to a deeper sense of our connection while also giving me much to contemplate about partnering. I went to a terrific workshop about dissolving stuck energy. And then there were the concerts: the Philharmonia Baroque’s production of Athalia and the final ballet in the series that Ann and I attend. In addition, work has kicked in with an interesting project that pulls forth my interest and creativity every day. I am so grateful for that: being able to go to work and solve interesting problems is a privilege and a joy.
Over the next days, I’ll give more in-depth though to the events and feelings that are guiding me these days. Short summary, I feel like I’m in a quiet zone where my health is relatively stable although I am by no means cured or over the cancer. I wish I were, but I’m not. So, more blogging about all of that.