Tuesday, January 27, 2009

January 27th, 2009: The past days have been dense and complicated since Eileen and I visited with Dr. Greene. I’ve felt a lot of disappointment and grief that my belief Western medicine could cure me has not been realized with the chemo treatments. I haven’t blamed myself or the medical community, but I have felt a loss of my hopes. However, a friend urged me to check the web site of the Optimum Health Institute, a facility in San Diego (there’s also one in San Antonio) that offers dietary healing as well as post-chemo cleansing to get rid of the toxins that have accumulated during treatments.

After reading their material, the hopes of getting relief from the rigors of chemo as well as a place to totally focus on my health and well-being sounded like a great idea. Plus, I am currently on the upswing from the last chemo session so I feel increasingly good in my body and am able to get around with good energy reserves through the day. I am not decimated by nausea or fatigue. Given these physical pluses, it seemed like an optimum time to attend this three week course.

This decision meant that I would not be in town for the fourth round of chemo as I had discussed with Dr. Jahan. I wrote this letter to the doctors on my team at UCSF.

Dr. Jahan:

After talking with you and Dr. Greene last week, it has become clear to me that the three courses of chemo I've taken have done good work to stop the tumor growth and even shrink sections of the pelvic and lung tumors. However, I needed much more shrinkage to merit surgery. Specifically, it would have been helpful if the lung tumors had disappeared entirely and if the pelvic tumor had also unraveled from much of its invasion of the densely packed tissues and organs.

It's been difficult to accept the results of the scans because I feel physically fine. The shrinkage that has occurred has given me a great deal of ease during walking, sitting and all the motion that used to cause pain. Even the pain medication has dropped because of less physical complaint. However, the scans themselves are relentless. There's a big mass in my pelvis and surgical intervention would be at best debilitating. None of us want that.

Also, I have used up three of the maximum six courses of chemo that are recommended. If I take the next three courses of chemo over, say, the next six months, then I am left with tumors that would probably be smaller than today. However, I have also exhausted my medical defenses. With no more chemo allowed, the tumors would basically have nothing to stop their growth. Plus, I am more exhausted after three more chemo treatments.

Rather than pursue more chemo, I am going to request a halt in our plans. I would like to take a break from the schedule we've discussed and do something different. I have set up a three week stay at the Optimum Health Institute in Southern California to help my body release toxins from the first three rounds of chemo. Through a mix of diet, cleansing and meditation, this program supports the body to lead the cancer fighting effort. I plan to be at this facility from mid-February through the first week in March.

This is a difficult decision because I have enjoyed working with you very, very much. Your enthusiasm has been infectious in the best senses and you have certainly inspired my willingness to give the chemotherapy a chance. My body has responded well but more was needed in my case. I walked into your office with some major metastases and the chemo has not been able to reverse those.

I am as hopeful for this new course of treatment as I was for the effectiveness of chemotherapy. I would appreciate continuing to be in your practice since I will still need scans and observation to determine the effectiveness of this alternate path. Additionally, I still have the port installed and I would like to leave it intact since I may need it in the future.

As always, I will listen to you carefully and with consideration. If you have questions or comments about my decision, please do not hesitate to let me know. Again, I want to thank you for the all the good work you have done for me and I look forward to seeing you again.

George Stevens

Friday, January 23, 2009

January 23rd, 2009: This morning, Eileen and I went to see Dr. Kirsten Greene to hear her opinion of the scans and whether I was a candidate for surgery. She said that she would not recommend surgery at this time. The tumor is still too large to take out without drastically affecting the pelvic area and my whole quality of life. She definitely suggested another round of chemo followed by more scans and decisions based on those scans.

I felt really slammed by the shock that I still have so much cancer in my pelvis that it cannot be operated on for a cure. It's particularly unreal because I have new comfort walking, sitting and generally being in my body. I am not getting worse, but the tumor is not shrinking as fast as it feels like it's shrinking.
Back when I was initially responding well to the chemo I had a couple of joyous clinic visits with Dr. O’Donnell and Dr. Jahan. That sense of excitement that the treatments were working, plus my increasing physical comfort as the tumor felt less and less invasive set my expectations quite high. Since the scans have been read, I am finding out that quite high was actually unrealistically high. I have done well, but I also have a large metastasized cancer that can’t be simply grasped and removed. Dr. Greene walked me through the pelvic images and showed how parts of the pelvic bone had been destroyed by the invading cancer. Although this can be removed and replaced, it’s a major event. Also, Dr. Greene was concerned about the lung spots. They have shrunk, but they are still there. She assumes that they are part of the cancer’s outreach. It was news to her that the liver spot was no longer considered pathological.

For the moment, my plans are to have a quiet weekend. This morning’s news seems like a setback at the moment, although down the line it will probably be a bend in the road. I am directed toward more chemo. Now, my effort can totally focus on the chemo shrinking the main tumor. That is the work to be done and I know that my body is doing the best that it can. As always, I am grateful for your support and care in helping me to work with the chemo and maintain quality of life.

Tuesday, January 20, 2009

January 20th, 2009: At 7:30 a.m. this morning, I received word that Dr. O’Donnell was in emergency surgery and would not be able to keep our appointment today. However, I was able to verify clinic time with Dr. Jahan, and with this new schedule, I went off to Gaetano’s home to watch the inauguration events. So many highlights! Aretha Franklin’s hat as well as the dexterity and joy in her voice at the end of her singing. The quartet with Yo-Yo and Itzak Perlman who played pure Aaron Copeland. Sections of the inaugural address including the unexpected outreach to the Islamic world. Much, much.

Then, off to see Dr. Jahan at clinic. Eileen Lemus and I asked about the results of the CT and MRI scans. Good news: first, the liver “spot” has been taken off the table as a significant health risk. It is most likely a cyst and not related to the cancer. The spots on the lungs have shrunk, although they are still present. Most significantly, the main tumor site has shrunk from its most expansive growth. The chemo is working. The operative words are: moderate decrease. Also, there is no trace of new growth into new directions or tissue areas.

The big decision about what to do next will happen on Friday in the meeting with Dr. Kirsten Greene. She will decide from the scans if the primary tumor is ready to be excised or if there should be another round of chemo. It’s true that I complain about chemo and its follow-up symptoms. With good reason! However, it’s also true that I have a deep rebounding strength from these sessions and within a few days, I am functional. In order to not set my expectations too high, Dr. Jahan said that I might well be scheduled for a fourth round of infusions before the surgery happens. Again, that will shake down in the meeting with Dr. Greene on Friday.

In honesty, I had a moment of disappointment. There’s an impatient part of me that wanted to hear Dr. Jahan say, “You’ve done such a fabulous job with the chemo and we can go right in and remove a bit of residual tumor.” That was a fantasy, and he did not say those words. Instead, I received a solid report that the chemo is effective and that going forward will happen either with surgery or with chemo #4 followed by surgery. I am grateful for what is.

Sunday, January 18, 2009

January 18th, 2009: Alert: upcoming results of CT scans and MRI plus next treatment plans to be announced on Nov. 20th.

This Tuesday will be a very big day in everybody’s life on planet Earth starting with Obama’s inauguration in the morning. If only that happened: dayenu (Hebrew, “It would have been enough.”).

At 1:00 p.m. on Tuesday Eileen Lemus and I have an appointment with Dr. O’Donnell and Dr. Jahan together. The purpose of this visit is to review the scans taken on Jan. 12th. These images will be compared to the earlier scans taken in mid-October before my chemo treatments started. Basically, they will measure the effectiveness of the first two courses of drugs. The third course had just ended at the time of the scans so its impact can’t be full included.

On the computer screen, Dr. O’Donnell will retrieve images that show how much the chemo has accomplished over the past two moths. My hope—for the record—is that all the lung tumors and 1.6 cm. “spot” on my liver will have vanished. Also, I have big hope that the primary tumor in my pelvis has substantially shrunk including a de-peeling from its connections to an inner thigh muscle.

A big question concerns the tumor’s penetration of my pubic bone. This was how the cancer was originally noticed on an X-ray after my hip replacement, and it’s the source of much of the pain I’ve experienced walking and sitting. My hope is that Dr. O’Donnell doesn’t need to remove any of my pubic bone because it’s a vital piece of the pelvic architecture and replacements can be difficult. I’d like to keep this easy. Yes, that’s what I’d like.

There was a prior agreement that if the tumor was still sizeable, that a fourth chemo session would be scheduled. However—good news!—I was set up for an appointment with Dr. Kristen Greene on Friday, January 23rd which tells me that my original surgical team is being pulled together again. This tells me that the tumor shrinkage I’ve experienced is very real and that the surgical team feels like they can go in soon to remove the remaining mass of Haughty Foe.

The surgical removal of the primary tumor and the eradication of the metastasized sites on lung and liver is my hope for outcome of all this effort. That will mark the physical removal of known cancer from my body. What a happy prospect! After talking with the doctors on Tuesday, I’ll get the results of what I hear onto the blog as soon as I am able, and, as always, my appreciation to all of you have supported and cared for me during this journey though illness into healing.

Saturday, January 17, 2009

January 17th, 2009: As Tolstoy claimed for all unhappy families, I would add that all chemo sessions are not alike. After my third round, I left the hospital with a bounce of joy and energy. That trajectory hit an invisible wall two days later on Wednesday evening when my body said, “I am sick!!” And proceeded to prove it in many of the well-known ways; specifically, enough nausea so that I could not retain anti-nausea meds, food or water for almost two days. Toward the end of this saga, I finally got it—again—that I was not going to magically get better. Friday, I stopped at work and then the gym for a soak in the steam room to release toxins. At the gym I stepped onto the scales and bottomed out at 134 pounds, which was ten pounds less than my previous low ebb. Somehow, I had lost a LOT of weight since being so full of water in the hospital.

From the gym, I went straight to the infusion center and basically presented myself as a drop-in emergency case. They stepped right up and served me. A quick call to Dr. Jahan resulted in an order for three days of hydration starting now. Within 20 minutes, I went from the admitting lounge to a bed with glistening bags of fluids, two big ones of which went directly into me over the next three hours. It really turned things around. I was also given IV anti-nausea meds, and by the time I left the clinic, I was able to come home and put some of my homemade chicken soup with wild rice and barley onto my famished stomach.

Today, same routine: nausea in the morning that makes breakfast unthinkable, and then off to clinic which settles me. I come home three hours later and am ready for food. Same thing tomorrow, I guess, since I have not been able to keep dinner down tonight. I am so grateful for the hydration clinic, because my first inclination is to stay at home and wait for my body to heal. But my body has so many complex and contradictory things going on at once, that physical healing and my mind's standards get into oppostion. If I were to stay at home, I literally could not keep even water down for who knows how many days and that is seriously depleting, cf. weight loss by mid-Friday. At this point, I need to get my mind and body out of each others' way. I need help, and the clinic helps my by infusing fluids directly into vein, bypassing all the usual mouth, throat, stomach route.

Daily, these circumventions are working. But as I said, they start out as being counterintuitive since I’ve quenched my thirst for the past six decades by drinking my fill of water. Within a day or two, the old routine will work again. Another lesson for me from having cancer: be joyful in the simple grace of drinking a soothing glass of water that flows into a receptive body. Yes.

Tuesday, January 13, 2009

January 13th, 2009: Chemo is daunting, and every time I go in for another course, I hit a bottom where nausea and fatigue meet. My descent usually starts on the fourth day, and by the fifth day, I am in full misery. In spite of all the anti-nausea medication, I am being given nausea inducing drugs—the chemo—that eclipses all the remedies. So it was this time as well. I had increased my likelihood of eating better food by having Eileen Lemus bring me Italian and Mediterranean dishes from to restaurants in the Haight. And the final day of eating, Tim Patriarca brought me food from Maitri. This was a wonderful change from hospital food until it wasn’t anymore.

I should say that I had a primo view; the North side of the hospital which looks out across the peninsula—great views of the de Young and the Academy of Sciences—and up across the Bay to Marin. Since the weather was uniformly great during my stay, the views were maximum. Because there is so much sky, you feel like you are being taken care of in the air which, in a way, is true.

Rather than start my stay with scans, it was decided to do the PT—chest, abdomen and pelvis—as well as the pelvic MRI on the final day. The PT scans are pretty easy; it’s a large ring of a machine, but it’s thin, maybe three feet, which lessens the feeling of being swallowed up. The MRI however, lasted for almost two hours. I am not claustrophobic, but after the first hour plus, I had to squeeze the emergency bulb just to be taken out for a respite. The MRI is excessively noisy when it is imaging. Sometimes it sounds like a lot of machine guns, but other times, I was able to morph it into something interesting. Yesterday, in the middle of this beast of a machine, I found myself choreographing dance finales to Bollywood musicals. I had seen “Slumdog Millionaire” recently which has an extravagant dance conclusion, so I took off from there and used the MRI drumming to drive my insta-movie: close-ups of people stepping to the MRI rhythm, aerial shots, green scarves waving, fuchsia scarves waving, lemon scarves, small groups, head-on, etc. It helped pass the time.

Gaetano picked my up at the hospital and I have to say, it was an effort to get into my apartment; my fatigue was at its peak. Then, I basically slept for fourteen hours; got up to drink water and take anti-nausea meds, minimal activity. This morning, after a slow start, I realized that I felt well enough to go into work for a bit, pick up my medications and stop at the infusion clinic for a shot that will stimulate my white blood cells. Plus a trip to the store.

When I got home this evening, I lay down to meditate. I gave myself total permission to fall asleep after such a busy day, but no: my imagination was calm and clear. When I went into my healing center, I added a couple of handfuls of white sage from the Taos mesa top to the water in the turquoise tub. A problem with chemo is that the smells are dreadful, they ooze out of the pores, and I wanted to improve my body aroma. While in my light sage brine, I felt big cat energy. Once I had stepped out of my bath and onto the marble mattress where I get healed by whomever, the gates opened to the garden and a truly large tiger came roaring up to my face. There have been other occasions—the cobra, especially—when the healers have initially frightened me even though I know that their intentions are to cause no harm. Still, I carry the imprint of fearing them. This tiger was clearly about transmitting energy that was meaty and bold. At one point, he stood up on his hind legs which requires effort for a tiger. I stood up on my marble slab and my hands connected with his open paws (which were huge). Through my spread fingers and palms the tiger sent me a major surge of life force. To seal the delivery, he or she rubbed the side of his head against my face to mark me, the way that felines mark a territory with the scent glands in the heads. I was blessed by a big critter, and I can still feel the push to live with intensity.

Wednesday, January 7, 2009

January 7th, 2009: I’m off to the hospital in a few minutes, but before leaving, I wanted to post my experience in my healing center last night. Once I entered the courtyard where I receive the healers who come with their gifts, I did my usual relaxation in my turquoise lined bath, then over onto the soft marble of my recliner bed. After a short pause, the doors to the garden opened and what entered was the wind. Pure air. That was the healer of the evening; breezes with the most assuring tang of health and energy. All I had to do was breathe, which I do all of the time. I experienced consicous breath for the next few minutes. I felt the healing nature of respiration which is an ongoing gift throughout all of our lives. Also, to consciously be aware of how good it feels to breathe not just into the lungs but throughout the body is a heightened awareness. I lay on the marble couch and enjoyed being alive, sustained by the rich, sparkling health of the air around me.

Tuesday, January 6, 2009

January 6th, 2009: I go back into the hospital tomorrow with an active schedule starting with scans—PT images of my chest and abdomen as well as an MRI of my pelvis—followed by a day of hydration, and then, three days of infusions from my two chemo drugs Iforsfamide and Doxorubicin. This will be the third round of chemo for me, and the treatments have made a profound difference by halting the growth of the tumors and shrinking them. From the scans, we’ll know the exact amount of tumor retraction.

I don’t think I could successfully hold this amount of medically prescribed poison if you readers of this blog were not helping my body with your support and good wishes. As I said in yesterday’s blog entry, this group effort has opened me to feeling cared for and loved in ways that I have never felt before. The chemo infusions will start on Thursday. If you could please read these lines that welcome the drugs, it would substantially improve my hospital visit. When you recite this text, it gives my body confidence that it can contain and manage this treatment. I’ve made a few changes to the invocation since this is no longer the first occurrence. Thank you for every time you say these lines and every time you see me having another successful round of chemotherapy.

The elixirs are here, ready to enter my body

My body knows them now.
This is their third passage through my fluids and cells.

These drugs have proven their willingness to kill.
Their poisons have burned deep.
My pelvic tumor has retreated; my hair has fallen out.

Yet, my body holds this heat.
My body maintains itself during the onslaught.
Welcome Ifosfamide.
Welcome Doxorubicin.
Welcome to my body.
Again, find your way through me.
You poison me into wellness.
Thank you for your ruthlessness and strength.

As with other times when I’m in the hospital, I won’t be posting any entries to the blog until I return home. Hopefully, that will happen next Sunday, Jan. 11th in the evening. Once I’m home, it may take a day or two before I’m oriented enough to type. That first day home can be fraught with nausea. Again, thank you in advance for all your good wishes and care.

Monday, January 5, 2009

January 5th, 2009: I spent the holidays feeling increasingly normal. For the first time in over two years, I started to walk with no internal discomfort. I still can’t run with ease, but I can move pretty fast, and sometimes if the bus goes by before I get to it, well, that’s just what happens. I’ve started going back to the gym for light cardio and lots of stretching. If I want to go to a museum, a movie, or other event in the community, I go.

The biggest shift in my perspective is that I am starting to see around having cancer. I can imagine life after this pelvic tumor is gone. In fact, I am imagining this happening relatively soon, within a couple of months. For one thing, I can’t keep doing chemo forever. I’m heading into my third session on Wednesday, and depending on my scans, there may be a fourth chemo session, or maybe not. But I believe that four is the max number of sessions that I’ll have to endure.

The biggest gift that I’ve felt from this unexpected and harrowing health crisis has been that I’ve made major strides in asking for help. As a little boy, I learned not to ask for help, especially within my family. Then, as an adult, I learned how to give help to others. However, I continued to withhold asking for my own needs be addressed. It didn’t feel safe, and I was still unconsciously hostage to my earlier lessons which had been grounded in disappointment and fear. Having a serious cancer diagnosis blasted through my reticence. Layers of isolation that I didn’t know existed for me have been revealed and evaporated. On a practical level, I learned to ask for what I really wanted (visits, support for taking chemo) and what I didn’t want (unexpected food, unexpected visits). But more substantially on an emotional level, I learned that I could figure out what I needed and ask for it. Unlearning the damage from childhood has been my biggest achievement during this health crisis. All of you reading this are a part of the reason that I am more confident and trusting. You’ve delivered for me.

Friday, January 2, 2009

January 2nd, 2009: I’m preparing myself to go back into the hospital. I’ll check in on January 7th and be there for five days. The first event will be scans: PT images taken of my chest and abdomen to see if there are still tumors on my lungs and liver. Then, an MRI scan of my pelvis to snapshot the shape and size of my main tumor. I haven’t been scanned since mid-October so these images will show the doctors how much the tumors have shrunk since treatment started. Please everyone, send me good energy that the lung and liver tumors are gone and the pelvic cancer has shrunk considerably and hopefully peeled away from surrounding bone and muscle tissues. I’m not sure when I’ll get the report about the scans since I don’t have a clinic appointment until Jan. 20th. But as soon as I hear about the scans, I’ll let you know the results. Those results will drive the next events. If the only tumor remaining is the large one in the pelvis, it may be possible to surgically remove it soon. Or, there’s a possibility that I would have another round of chemo and then have surgery. We’ll see. Either way, I am heading into the very exciting possibility of becoming cancer free. Considering where I started in September and October with my metastasized diagnosis, this is a very dramatic turn around.

Each time I go into the hospital for chemo, I have a totally different set of reactions. This always surprises me, since I start out assuming that I’ll have the same set of feelings I had the last time. Before the first visit, I was wild with anticipation because I desperately wanted treatments to start. Prior to the second chemo session I wanted to go back into the hospital and be taken care of, but with a maintenance attitude of someone who's done this before and knows most of the steps . This time, I’m grumpy and impatient. I’ve done this already, and I am looking forward to having a life after chemo. This is a huge step forward. A life after chemo. I could only conceptualize that a few weeks ago, now I openly, shamelessly want it. I can taste it. I know it will happen.

Other changes are revealing themselves as well. A couple of blogs ago, I mentioned that I was having trouble visualizing in my healing center. I couldn’t see or hear my visiting healers. Perhaps the shrinking tumor meant that I didn’t need as much pain medication? In the last couple of days, I cut my medication from 150 mcg of Fentanyl to 100 mcgs. All to the good. I haven’t had noticeable pain, and I have felt more clarity in my meditation. Last night, when I went to the healing center my visitor was an owl who swept me up into tree tops and whispered about being able to see in the dark. In this case, darkness isn’t about flying in the night rather, it’s having the patience to navigate the unknown places that still await me on this journey of illness into healing.

Finally, I am happy to report that my ability to hear music more complicated than a quintet has returned. I had ordered a recital of Mozart arias by Diana Damarau and an old recording of The Seige of Corinth by Rossini. When they arrived yesterday, I decided to try listening to the Mozart arias. Much to my surprise, my old ability to enjoy tonal color, to be stopped in my tracks by beautiful vocalizing and to compare this new voice with other singers I’ve heard over the years all came back with a fullness that I haven’t experienced for at least four months. After that success, it was with hope and apprehension that I put on the Rossini opera, a live recording from La Scala in 1969. When the overture had finished and the singing began, I sailed into the experience with easy pleasure and no resistance. That sinking sense of being overwhelmed by the complexity of instruments and voices never kicked in. I don’t know Beverly Sills’ voice very well, but I have spent a lot of time listening to Marilyn Horne. As I heard to both of them singing, together and separately, I felt like my old pleasure centers were back in place. I have no idea why all of a sudden my ability to hear opera should return. Is it because I am taking less medication? Have I been in some sort of undiagnosed depression that's lifting as I start to anticipate full health? Other reasons? I just don’t know. But I am very grateful for the shift from vocal aversion to anticipation.