Wednesday, September 30, 2009
Yippie! Connectivity has been restored, and I am now typing this entry on my desktop computer that has been my portal into the cyber world for a couple of years. I am online, in my permanent room at Maitri.
When I started my intake at Maitri two weeks ago, I was given a sun-drenched room overlooking a busy intersection. I enjoyed the room and didn't bond with it at all. I just spent time there. The fact that the pictures on the walls did not appeal to me mattered for not. But yesterday, it was time to move into my permanent room. Suddenly, I felt deep resistance to leaving the temporary room. I was busy in the morning with my social worker and my therapist so I didn't have to move then. After lunch, the attendant who offered to make up the mattress and linens on my bed got called off to another project, and I didn't lift a finger to request that another person get my bed ready. After dinner, I lingered a bit more. Finally, the bed was ready. I had moved all my clothes and papers into my final room. I quickly jumped out of my clothes, into bed and read for a bit. Then, I closed the book and looked around the room. This was it. My final place. I had moved into the room where I will spend the last months of my life. Quite likely, this is the room where I will die. That was the reason for my hesitation to move in and claim residence.
Part of my process of dying involves long plateaus of acceptance punctuated by sudden, abrupt and expansive realizations that my life will end soon. Not next week, but soon. Moving into my final room was such a realization. A connection is made that nudges me closer to my end. The result of the new acceptance is that my dying becomes more real. More inevitable. It may be hard for others to believe this, but I spend most of my time living in the now, in the past, in the future as I always have. I'd say as little as 5% of my time I remember that I am terminally ill and that I will die in the next few months. Point being, I don't think about dying all the time. Far from it. When I do catch up to this part of my overall reality, it's usually an easy segue. Occasionally, if the mortality reminder is harsh or brutal, then I'm stunned or pained which knocks me into overwhelm. Moving into Room #5 is somewhere in the middle of that continuum.
Waking up this morning, after my first night here, I felt more hesitancy. I knew that I'd spent my sleep time reaching my antennae out to the edges of the room. That's one of the ways I move into spaces; I stretch to their edges as if to memorize the container. Early morning light was golden and rich. After breakfast, Wendy came by for a visit and she sat at the edge of my bed. We held hands and talked a bit, but not a lot. That's when I really started to settle into the room. What I felt holding hands was intimacy. Closeness. Comfort and love. If I can create that in my living area, then I'm happy. On the first morning in Room 5, intimacy was created and nurtured. My final room is off to a very good start. The resistance has evaporated. I like it here. There's room for me and my friends to be ourselves.
Monday, September 28, 2009
This will be a short but important posting. First, I am leaving my land line of many years and switching to my cell phone for staying in touch. The old number (415) 921-1819 will be deactivated in the next few days. Please erase it from your records. In place, you are welcome to use my cell phone number as often as you like: (415) 517-9278. When my number at Maitri becomes available, I'll let you know what that is as well.
Also, my PC is minutes away from being moved. It will take two or three days for it to be set up at Maitri using the wireless network. I will be back online as soon as possible and will continue the blog at that time. I can still access incoming email and send replies.
In a couple of days, I'll be totally available electronically. We'll be in touch then!
Sunday, September 27, 2009
The emptying of my apartment is happening at full throttle. It's so startling to see vast expanses of wall space for the first time in sixteen years. Places where there were well-known rugs, textiles, paintings are now bare white, highlighting the wall moldings that gave this apartment such a distinctive formality.
What I'm aware of is how much prior anticipation I've done to release my things. This is unique among my community of friends. I started saying goodbye on the conceptual level several months ago when I first imagined giving specific objects to people. As my health declined, my urgency to disburse grew. Now that it's happening, I am reaping the relief that I've hoped for. Things are going to their new homes. As my friend Jackie Udin said at the end of her visit to pick up books, "Have a wonderful rest of the day giving things away!" I get to thank everyone, say goodbye to the objects and experience as complete a closure as I could hope for.
To others, it's not so easy. This apartment grew into a well-integrated space for all the objects that found their home here. The vibe was remarkable: serene, lots of specific beauty, nothing overwhelming, an intuitive mix of interesting pieces. Nothing of great value, but every object made a contribution. Building this home turned into one of the most pleasurable events that I worked on over the past decade and a half. There was never an overarching aesthetic or plan. Other than the repainting and installation of track lights some eight years ago, there was no major overhaul. But slowly, piece by piece, the collection grew into a home that was conducive to visiting over a cup of tea and letting friendship deepen.
For my friends who experienced the joys of this apartment, it's wrenching to see it taken apart. As the objects disperse, the container of our friendship also evaporates. That's a lot to give up. And it's a step closer to the ultimate separation which will happen when I die. I am seeing the end of the apartment as a dress rehearsal for saying goodbye to me. That's why people come here with a spirit of bravery and courage and sadness and poignancy. It's the end of an era in some very real ways. I have to say, it was a lovely time. I feel like I used this apartment well and that it held a great deal of fine energy. Thank you, good apartment. Thank you for your solid framing and your willingness to nurture so much love and beauty for me and my friends.
My last act after the final pieces of me go out the door will be to smudge the rooms with sage. I will let cleansing smoke filter the air of that day. I will thank each room. I will walk to the front door and walk into the hallway. A turn of the key, and I'm gone. Off to my new home.
Friday, September 25, 2009
It's been difficult to blog over the past few days. I am living at Maitri, and my computer still lives in my apartment. This will resolve in the next few days when I move into my assigned room at Maitri. Currently, I'm in a temporary room. When I move my computer and reduced collection of art, clothes, etc. into Room #5 at Maitri, then all of my daily effects will be in one place. An interesting feature of Room # 5: it faces an inner courtyard with a garden. My current room faces the busy corner of Church and Duboce streets which is a major public transportation hub. I have been enjoying the urban noise and commuter energy that surges up to my current room. However, I can feel my body wanting to move toward a quiet zone. That's why my new room has such an attraction for me. I can feel myself and my new room bonding even before I move in.
As I work with Gaetano to set up a schedule for people to pick up my gifts to them, the task and the managing of all the arrivals both excites me and exhausts me. I spend time imagining how good it will feel when there are no more pickups of gifts. I will be in a room facing the garden. My body can rest on the bed and see out into the plants and flowers. I am envisoning staring into windows that give into a mottled with leafy shade, serene, internal world. Never in my life have I felt such a turn inward. I hunger for it. And, fortunately, it's heading my way.
As the gifts start to move out of the apartment, it's interesting to watch myself be relieved and grateful to see them go. Also, when working with my friends Jeremy and Gaetano this morning as we took pictures off the wall and bubble wrapped them, I found myself becoming curt and tongue tied. I tried to remember the name of the covering on my bed (answer: bedspread), but I couldn't get to that vocabulary word. "Covering on the bed," I struggled. Both guys were wonderfully patient. I realized that I was winging it for wrapping, planning, making decisions. And it all resolved beautifully. Everything was wrapped safely, loaded into my friend Kathy's truck and sent up to Portland, Oregon for delivery. The first day of major divesting passed without problems. A few more of these days and the apartment will be cleared. Gratitude. Anticipation. Relief. Focus.
Monday, September 21, 2009
The past weekend found me settling with increasing comfort into Maitri. My tasks are to relax and to become more adept at anticipating my pain management before the pain takes over. I have the services of Hospice by the Bay to help with meds. This agency has deep skills over many years and they are available to consult on my needs around the clock. Basically, the work with my primary care physician and with Maitri to establish a protocol that keeps me comfortable. That sure fits with what I want!
Today, I started sending out announcements to people who live in the Bay Area to plan a time to come and pick up the gifts that I am giving to them. Not all the announcements have been sent, so if you live locally and didn't get a message, don't worry. Also, not everyone has been given a gift, especially if they didn't ask for anything. For people who live further away, I will be in touch with you to set up shipping arrangements.
Gaetano has generously offered to coordinate the pick-up schedule and I am very grateful that this process is underway. My biggest short-term task is to empty my apartment and everyone who takes something is helping me do this. Thank you, thank you for taking over the stewardship and enjoyment of the objects that I love.
After enduring a couple of days of exhaustion and discomfort shortly after moving into Maitri, I suddenly felt much better walking on Friday. I was so surprised. I had cancelled several entertainment events that I'd really wanted to attend including plays in Ashland and the first night of Mark Morris Dance Group during their Berkeley Fall visit. As much as I wanted to go, I knew that my body wouldn't allow me to walk any distance, even with crutches or a wheelchair. So I just thanked my already full life and stepped aside from those performances.
Then, I suddenly felt better. As I listened to my body, I felt that I could attend the San Francisco Opera's production of Il Trovatore. I also knew that I didn't have to. But I could if I wanted to. And I wanted to. After hearing several fine performances of this riveting opera over my forty five years as an opera-goer, I had the pleasure of attending the definitive version on Saturday night. It all worked. The sets were good to wonderful, the conductor had a brilliant vision of the momentum and colors he wanted to create, the orchestra blended beautifully and the singers excelled in every direction: vocal power, nuance, dramatic interpretation, strong character development and lavish, opulent singing that did not stop until the final cry of "Vengeance!" It was great grand opera and a fitting final performance for my lifetime of loving this above all other art forms.
As I settle into managing the distribution of my goods and adjusting to the daily routine at Maitri, I am amazed to realize that a week ago, I still lived in this apartment and I was just about to attend the Maitri Board of Directors dinner where it became clear that I needed help and 24 hour care. How quickly things happen with the right people help out!
Friday, September 18, 2009
I moved into Maitri quite suddenly, so my plans about how to use my two homes has been pretty seat-of-the-pants. And that's turned out to be quite fine. After being in my temporary room for a few hours (my permanent room becomes available on Sept. 30th), I decided that I needed to let my roots grow into my new home. I didn't want to jam those roots into their new environment, rather, let them ease in at their own pace. This meant that I spent my first night there, then, the second night as well. Now I see myself spending all my nights there. That's moving in.
So much of tuning into the rhythm of the place involves being there for meals and night time. There's so much to adjust to. I have pills brought to me at specific times. There's the option of dining with other residents or in my room. And speaking of dining, I no longer have to cook for myself. A mixed event: I love to cook and I like the results. Still, the time and dexterity are harder on me than in the past, so it's appropriate to hand over that responsibility. My current room overlooks the cross streets of Church and Duboce. This is a major traffic hub and I have to say, I totally enjoy the urban sounds of the streetcars, buses, cars, underground, etc. I used to take all those transportation systems within the past week and it cheers me to hear the mechanical brakes and accelerations as people are carried from one place to another. My apartment on Fulton is much more quiet by comparison and I have a big tolerance for the noise.
The two tasks that occupy my thoughts are the dispersion of my worldly goods and setting up a telephone tree. Here are my thoughts about giving away my stuff. Many people have requested something or things that they've always liked of mine. Also, I've asked people to take something that seems a good match. I've kept a list of the people and the things. In the next few days, I'll send out an email to each person reminding them of the gift. If the object has a dimension that makes it hard to put in a car, I'll send the measurements so that you can arrange for appropriate transportation. If you live outside the Bay Area, we'll figure out shipping. I would like to be out of this apartment by the end of October, so the next few weeks will be busy with people arriving to pick up their things. All of this retrieval will be scheduled. I may be here, or it may be another person such as Gaetano who has volunteered to be there for the occasion. Unfortunately, this will not be a major social moment. I would really appreciate it if you could come here, pick up your gifts and do a slow U turn. We can visit at leisure when I am at Maitri.
The second planning is to set up a communication tree. Here's how that works. Eileen Lemus has agreed to be the trunk, the person responsible for sending information about my condition to ten or twelve people. Those ten or twelve people will have a list of folks that they relay the information to via phone or email. This system allows for 150 to 200 people to receive messages very quickly. Whereas, if one person were to try to...well, let's not go there. For right now, this tree isn't an immediate requirement. It's growth will start when Eileen contacts the branches and the branches contact the twigs or leaves. Sorry, this metaphor is getting awfully tired very quickly! But, you get my drift. Right now, the blog serves to keep all of you informed. The tree will be most appreciated during the end of my life when I'm no longer able to manage the information about myself. I'll be living it, but I won't be able to report directly. At that point, the blog will be taken over by two or three writers, and the telephone tree will also be sending out information. As the tree starts to grow, you'll be contacted. Whew, no more organic allusions for a few paragraphs!
In terms of my health, I am very well cared for. My pain management system is being tested, tweaked, etc. I am much more comfortable. My ability to sleep has always been good, but I am more deeply rested in the past few days. It's as if my body said, "OK, I'll get you through the end of your work and career, and then I need to fall apart a bit." Which is exactly what happened.
I know that many of you have questions about how to reach me. Right now, I retrieve my messages from my land line twice a day. You can still use that number--(415) 921-1819--for a couple of weeks. After that, you may use my cell phone number: (415) 517-9278. When I move into my final room, I'll give you that number so that you may directly call me on that line as well. I don't imagine a lot of correspondence, but my new address is Maitri Compassionate Care. 401 Duboce St. San Francisco, CA 94114. Attn. George Stevens
As many of you know, Maitri is located near the corner of Church and Duboce streets. At the exact corner is the vintage clothing store: Out of the Closet. Maitri is right next door with a Japanese entrance. Parking is sketchy, but the public transportation is fabulous. Actually, parking isn't that bad. Just remember that you are in San Francisco!
I have felt so supported by the people who moved mountains to get me into Maitri within 24 hours of realizing how deeply I needed care. Also, all the people reading this blog whether you have sent emails or not, your energy has been a part of my ability to make this move with little or no ambivalence. The time is right. The place is available. It's my pleasure to make the move.
Wednesday, September 16, 2009
My last post started: 16 days until I move into Maitri. Wrong. As of this morning, I moved into Maitri. I have started my intake with the social worker and the nurse. Tomorrow I'll start working with the Hospice person to manage my medication. So, what's all the hurry? Why is this happening so fast?
A few hours after my last posting, I went to the home of Boone Callaway and his partner David for a dinner hosted by the Maitri board of directors. Also present was Tim Patriarca, Maitri's Executive Director, and Traci Teraoka, the person who arranged the decor and furnishings that set the feeling tone of the residence. As I was walking down the stairs of my apartment building to Traci's car, I made it to the last stair, stopped to rest and was suddenly overcome with pain. I was so overwhelmed that I wept. Traci comforted me and presently we continued to the party. Once there, I settled into visiting with the arriving board members until the pain returned in full force. To manage as best I could, I went into another room and lay on the sofa, breathing until my overwhelm receeded. By the time dinner was served, I had relaxed a lot.
As the courses were served, I managed to stay with the conversation most of the time. We started by going around the table and expressing our gratitude for each other, stories about Maitri, memories of my service over the years. My own gratitude centered around being held in this group as a sick person. Indeed, I was sick. Right in front of everyone. Then I spoke about how much it meant to me to know that Maitri would care for me in my final weeks and months. Between courses, I relaxed by getting up from the table and lying on the living room rug to relax. By toggling between sitting and resting, I made it through the evening.
Before the party broke up, Traci had asked if she could spend the night to be sure that I had any assistance I needed. A week before I would have declined her offer; on Monday, I accepted without hesitation. Also, Tim suggested that I could move into Maitri sooner than planned. As soon as Wednesday (today). Again, I said "Yes!" immediately.
The next day, Traci and I had a leisurely breakfast and I started talking about how much I had enjoyed the evening. After promising to stay in touch through the course of the day and move as many mountains as necessary to gain early admittance for me, Traci took off into her day. Within a few hours, she called to see how I was doing. Ever the rose-colored-glasses romantic, I waxed on about how well I was getting around, etc. Traci listened politely and then said, "Last night was not only fun. It was also very scary and frightening to see you in that much pain. We were really concerned about what to do. Your pain management failed and we witnessed that. It was difficult to watch." I knew that she wasn't in any way blaming me, rather, that I have spent so many months pushing myself forward to get things done, that now, with my energy declining and my tumor growing, I cannot fake my discomfort any longer. My strategies are failing with my health. What other people see is more realistic, less sanguine.
Quickly, I assembled my application for admittance to Maitri. That afternoon, Wendy returned to take care of me for the evening and night and joined me in the scheduled appointment with my primary care physician. Then, we stopped at Maitri to drop off the paper work. Grace Molyneaux, the attending nurse who runs the medical side of the residence reviewed my application and said, "You can move in tomorrow." I was startled. Tomorrow? She explained that it would be easiest to get me started with hospice pain management as well as all the intake effort with no delay. Stunned, I left with Wendy who assured me that the sooner I had 24 hour care, the safer I would be. Clearly, a part of me wanted to get into Maitri for the safety and comfort. Another part of me felt startled to have the move happen so soon.
Just before noon today, I took a cab over to my new home. With a carry-on containing my meds, some clothes and a few toiletries, I entered my new home. Rather than climbing the stairs, I took the elevator up to the second floor. As I walked toward Grace's office, I was suddenly overwhelmed. This was it. I was here. In my final home. I wasn't just visiting. This wasn't a wander on the floor prior to a board meeting. This wasn't a social call. Sabrina the nurse came up to me, looked me directly in the eyes and said, "Oh, I am so glad you're here! We'll take good, good care of you. Let me help you with this." And with those words, I crossed the threshold and was led toward my new room.
Monday, September 14, 2009
16 days before I move into Maitri. That's become my new goal and everything is being swept aside to clear the way for that change. What all this means is that my tumor is now so incapacitating that I have trouble getting from one room to the next in my apartment. My friend Wendy was a houseguest this weekend, and she has a background in nursing and end-of-life care. She watched me navigating up and down my stairs and at the end of her visit she sat me down and said, "I think you are in serious danger of taking a fall. You're a cancer patient and your bones have been weakened more than you know. You are taking a lot of drugs, and your gait is very, very unsteady. If you have a serious fall and break a limb, or worse yet, your pelvis, you could end up in an Intensive Care Unit and be too broken to even be admitted to Maitri. I hope that doesn't happen, but I have seen it happen in cancer patients. Take care of yourself better. Don't go out and take risks. You have to care for yourself structurally."
That warning really frightened me. But more alarming was the actual feeling of being in my body right now. I cannot walk with any ease. I am very unsteady. So I have decided to just empty my calendar of all commitments outside this apartment. I'll schedule visits from people while I still live here and of course, I happily look forward to seeing people when I get to Maitri.
This afternoon, I received a call from the radiation oncologist who I talked with last week and who had rushed me into appointments for treatment. This time, he was much softer and a better listener. I told him about my concerns around not wanting to take on serious risk of being hurt by the radiation. He agreed that there would be skin damage and loose bowels for at least a couple of weeks. I also asked about radiating only the portion of the tumor that had grown into my leg. This time he agreed to consider that procedure although he was concerned that the lymphatic system that cleanses my leg would not be able to do it's job since the portion of the tumor not radiated would continue to press on those channels. After his call, I was talking with Eileen and realized that I didn't want to even consider radiation until I am settled at Maitri. When I'm getting 24 hour care, I can entertain the notion of having skin burn care and attention to loose bowels. Doing all that at home while waiting to move would be a nightmare. Major nightmare. So, for the next few weeks, radiation is off the table. I just can't juggle too much. Never was good at that.
It's shocking and sudden for me to live out this rapid decline in my ability to walk. But it's happening, and so for the next while, I plan to stay in bed as much as possible and read, read, read. After all these months of being sick, I am finally taking to a horizontal position. It's the most comfortable and the most appropriate. Wish me well, please!
Saturday, September 12, 2009
Thursday was a day of major conclusions and equally important beginnings.
The conclusions: At two in the afternoon, I went to my Thank You party hosted by my boss and co-workers at PG&E. It celebrated the end of my contract at the utility as well as the end of my career as a corporate writer. That's what I did over the past thirty years: corporate writing. I started as a technical writer, moved into training development, then system testing and finally I spent the past several years as a business analyst. All of these were writing jobs whether the result was a user manual, lesson modules, test scripts or requirements for new systems.
Jim Sterling started the party by talking about how he first met me at American President Lines back in 1984. I felt honored by his sincerity and enthusiasm; it's always been a grounding experience to work with Jim and to support his outside interests in Japanese culture, the growth of his family, his devotion to his friends. My boss Michael Wong talked about how much he had learned from me in the past months as I combined my illness with my continued effort at work.
Then it was my turn to talk about what the contract at PG&E had meant to me. First, how dedicated I felt about bringing standardized requirements to the business. To someone outside the world of information technology, this may sound esoteric, but it really means having clear agreements about what would be included in a new piece of software. Without these agreements, chaos is guaranteed. The other praise in my speech was to say how much I felt supported as a sick person at work. No one ever made me feel less-than or unwanted. During the last year I've had a hip replacement and cancer treatments. I went through chemo and the loss of my hair. I traveled to Southern California to detox from the chemo. I was not able to work full time, but no matter. During this year, I produced some of the very best work of my long career. I was treated as if I had worth, and I delivered value.
Finally, we concluded with a long session of stories that I told about people in the room. They retaliated with stories about me. All this was fueled with intense chocolate cupcakes from Boulette's Larder! What a surprise. I believe it was my friend Nil Taspinar who contacted Boulette's and asked them to cater the treats for the party. As it turned out, the whole party was a prolonged treat.
The beginnings: Earlier in the day, I talked with Daniel Hill, the intake coordinator at Maitri. I had written to him and my doctors over the previous weekend, saying that I was ready to move into the residence. My friend Margaret Hess read that blog entry and promptly called me saying, "I totally support your decision to move from your apartment. It's all about feeling safe." That summarized it for me: the move to Maitri is about creating the new level of safety that I need in my life. I need daily pain management and my meals prepared and no home to maintain.
I called Daniel and we talked about the room that will become available in the last week of September. It's room number 5, and it looks out onto the non-smoking garden in the Maitri atrium. It has good light (as do all the rooms). As soon as I heard that the room didn't face the street and wouldn't receive street noise, I said, "I'll take it." As I said that, I felt a huge, silent door swing inside me. I am leaving my apartment of the past 16 years, and I'm moving into my final home. I deeply, deeply want to do this. At this point in my life, the best way I can take care of myself is to let others take care of me. And I want to be taken care of. It's such a fundamental act of respect.
My date to move into Maitri is scheduled for September 30th. By then, my room will be painted and I'll know the furniture--bed, armoire, TV, etc--that awaits me. I will have selected the pieces that I want to take with me from my apartment. Of course, I have no intention of completely moving in the next two weeks. Here's the beauty of what will happen. I can start living at Maitri at the end of this month. I can sleep there, I can eat there, I can start to know other residents. Most days, I can come over to my apartment to pack things and be here when people come to pick them up. I won't live in my apartment as it disintegrates around me. I will come to the apartment as if I were going to a job. Indeed, it will be a job. I think this will lessen the sadness of seeing this home unravel.
Since making this agreement with Daniel on Thursday, I've had all manner of never-before thoughts bubble up for me. In the kitchen, I look at my diminishing supply of fabulous olive oil and I think, "Hey, there's enough to last me for the next two weeks. I'll never have to buy olive oil again." For the past forty years, I've thought, "What's the best olive oil I can find?" There will be many, many such realizations over the next two weeks, and I promise not to document them all in these postings.
My thought for the day was given to me a few minutes ago by Georgia Fuller. We were talking on the phone and I was telling her about my decision to pick a room and set a date for moving into Maitri. "Well," she said, "Your work isn't done there."
Wednesday, September 9, 2009
Today has been all about taking care of business: get a smog check for Bianca (my car) and then off to a fun-filled round of scans, blood draws and more scans. The big lesson surrounding all these check-ins and check-ups was: Be willing to ask for help. Last weekend, when I told Ann about going to UCSF for an MRI at 7:00 in the evening, she immediately inquired, "Can I take you to that appointment? I'll be in town that day, and it would be no problem." I promptly turned her down. "No, it's easy for me to take a cab. But thanks for the offer." Why would I want to trap Ann in the waiting room of a hospital while I get scanned? She offered once more, "I can sit in the lobby and read magazines. I never get to do that. Really, it would not be a problem." And again, I put her off. Several hours later, I wondered to myself: why not accept Ann's offer? I'd get to visit with her. Clearly, she wants to help. Don't I need help? And that turned out to be the turning point for me: Why don't I need help? Because I don't deserve it? Because I have to be self-sufficient even as I become sicker and more debilitated? Fortunately, I changed my mind, contacted Ann and told her that I'd be happy to accept her offer for transportation to the MRI scan.
A couple of days later, same story, different circumstances. I was telling Gaetano about getting Bianca smog tested, and my trips to two hospitals for three types of tests all in one day. "Can I drive you?" he asked. Again, I deferred. "Oh, no, no. I can take taxis from here to there," I explained. When Gaetano proposed lunch, I wavered, then switched my position. I wanted to hear about his recent trip to New York. I wanted to catch him up on the avalanche of stuff that I was contending with. Twice in a few days, I changed my mind and let someone help me. I confess to being a slow learner here. I also want to state that it's my big learning curve over the next months. When I disburse my possessions, when I move into Maitri, when I let someone help me bathe, dress and eat if I become really debilitated, then that means asking for help. I can't do it alone, and I don't want to do it alone. Time to unlearn, unlearn, unlearn.
In the midst of this busy day of being helped, I stepped into an unexpected event that truly startled me. It happened toward the end of my afternoon of hospital visits. At 3 p.m. I was in the basement of UCSF at Mt. Parnassus getting a CT scan to assess whether I would be a candidate for radiation of my pelvic tumor. It was uncomfortable to lay flat in the scanner because my tumor has grown so large that I can't keep my right leg straight on the scanning platform. The lab tech and I worked to make me comfortable. He carefully fit me with a foam-filled pillow that would hold my position stable for the scan and potentially for the radiation treatments. Then, another tech came in and put tattoos on my pelvis and legs. I asked her what the tattoos were for, and she explained that they would position the radiation rays. Then, she handed me a card with an appointment for next Tuesday morning. "What's this?" I asked. "It's for your first treatment," she answered. "But I haven't agreed to any appointments. I need to talk to the doctor about what he plans to do based on these scans. He hasn't even looked at the scans yet. We just finished the CT. I have my MRI scans tonight." She looked at me very oddly and said that she'd get the doctor.
After a few minutes, the doctor arrived with a furrow between his eyebrows. "What's the problem?" he asked. "Well, I was just given an appointment for radiation treatments and I don't know what they will entail. I haven't agreed to be treated yet." The doctor replied, "I explained that to you during the first visit." I answered, "Yes, you explained the possible treatments and the possible impacts on my body. But that was an overview. I don't know what you actually plan to do. You need to tell me that. And you need to tell me when my advocate, Eileen Lemus is present. I need for you to look at the scans and summarize what your plans are so that I can agree or disagree based on risk to me."
By this time, the doctor was looking at me as if I was from Mars. "I've already gotten clearance from your insurance company to give you the biggest radiation treatment possible." I responded, "Thanks for talking with my insurance company, but you still have to talk with me. And Eileen needs to be present. I don't know what you plan to do, and I need to know before we move forward. For example, will you radiate just my upper thigh or will you radiate the entire tumor?" "Oh, I'll radiate all the tumor," the doctor assured me. "I would never radiate just a part of the lesion." "OK," I summarized. "That's new information, and I am not having any treatments until Eileen and I have heard the entire plan and agreed to it."
Making an effort to contain himself, the doctor tersely agreed, "Then we have to have another meeting. And we have to do this quickly. There is not a lot of time." I couldn't wait to end this negotiation. It infuriated me that our original agreement to discuss the scans had been completely overridden by the doctor's agenda. What would happen if I caved in and simply agreed to his medical wisdom? Would any damage that I incurred during the treatments be answered by, "I told you so?" Truly, it was a frightening encounter during the middle of a long day. Still, I felt good about defending myself and insisting that Eileen be present when the scans and my tumor and his plans were all laid out as a final assessment. Also, I felt like I barely dodged a bullet.
Monday, September 7, 2009
I've been thinking a lot about how much has happened in the past year. At the end of August, 2008 I had my right hip replaced with led to the discovery of the tumor which led to my present state of decreased mobility and yearning to move into Maitri. It's been the fullest year of my life in terms of growth, moving through layers of shock and restabilizing with new plans.
It's also been a time of unprecedented loss. Externally, the death of my Mom was a sudden and blessedly easy passing for her. It's been a more subtle and hard-to-get-to loss for me. An obvious reason is that I've had a huge amount of personal drama in my face. My approach has been to let the feelings of missing my Mom and the impact of her legacy emerge in their own time. This has started to happen in an unexpected way. Since her passing, I've been hoping to have some sort of contact with my Mom, and that's not the sort of thing I can force. Doesn't work to say, "OK, Ruth, step through the veil for me."
I was sitting in the oncology waiting room with Eileen Lemus a couple of weeks ago when she asked me, "Do you feel your Mother's presence?" I responded in the negative. "Well," she continued, "I do. I'm aware of her. I first felt her during one of our visits to Dr. Jahan, and she was there at the Maitri dinner." I was astonished. "Really?" I asked. "Yes. It's definitely Ruth." Many of you know me as being very receptive to all manner of trans-dimension New Age, astrology and beyond interests. But I don't have that sort of relationship with Eileen. I could not have been more astonished by her even-toned certainty. Being aware of my mother was simply a part of her current reality. Since then, at low ebbs in this apartment, I have felt my Mom's presence. She is watching, caring, not talking out loud but definitely here. I can't begin to tell you how welcome it is to have a direct relationship with my Mom again. True, it's limited in many ways that are new to me. But it also has a connection that's stronger than anything I've felt since she died in early March. So good to be together again!
I was talking with Wendy this morning about what a roller coaster of a weekend this has been for me. On Saturday, I realized that I have to move out of my apartment soon or sooner to get the care I need as I loose the ability to walk. On Sunday, I stabilized this life-changing decision and accommodated to it. I could tell that it was a sound move because when I thought about it there was no ambiguity, no hesitation, no worries that this might be a mistake. And today, I am ever more at peace with the plan. I've started to complete my packet for admission to Maitri. I feel even more reassurance about how I am moving in the right direction where I'll get the care I need. Wendy summarized it by saying, "Your freakouts are very time-limited."
Tomorrow, back to work to put the final frosting on the big cake I've baked for my last project. Later this week, I'll have a going away party at work. I haven't seen this honor conferred on a consultant in my experience of working at PG&E. Full time employees, sure. But a consultant is usually given a hearty thank you and that's it. I am particularly glad for this acknowledgement because I like to think it includes all of me. Not just the work I've done for the organization, but also as a way to face the fact that I am terminally ill yet still alive and valuable. Big thank you's to my boss Michael Wong who has a large vision that sees beyond the outline of my worker bee self and into the fuller dimensions of who I am. What a fine guy.
Sunday, September 6, 2009
On Friday evening, I had tickets for a play: August, Osage County. As the hour approached to call a cab to get to the theater, I realized, "I'm not going tonight. I can't do this. It's just too hard to navigate the crowds and..." The point was, I just didn't feel that I could walk my way through the event. Although my pain management was in pretty good shape, I simply couldn't walk very well.
The next morning I woke up and as I lay in bed, feeling myself in my body, I looked around my bedroom and suddenly knew: "I need to move into Maitri as quickly as possible. Living in this apartment is over. It's been a wonderful home, but I can't stay here any longer." This awareness had the same clarity that I'd felt last Spring when my body told me: "You are not going to survive this tumor. You are on track and you are going to die from this cancer." As with the realization that I wouldn't survive this illness, the knowing that I should move soon was simple, implacable and washed with tears. Throughout Saturday, I wept.
I have loved living in this apartment over the years, but I also feel a ruthless urgency to move. Reason: my mobility is declining rapidly, and I can't imagine being trapped in this lovely prison. At this point, there's a definite pattern to my walking throughout the day. Mornings are the worst. Dr. Capaldini has suggested waking up a bit early and taking a couple of meds for pain breakthrough. Go back to bed and get up a half hour or an hour later when the morphine is active. That seems to help, but I am still fragile and uncomfortable with mobility. Then, as the day continues, I become more adept and easy in my gait. Still, I feel like my mornings are a view into my future. As the days advance, I will find it harder to walk. That's been my experience over the past couple of weeks. I do not expect to get better on my own. True, there is the hope that radiation my give me some relief and more mobility. But I can't endure getting worse by the day, hoping that radiation may solve my problems. If the radiation works, so much the better. I am still facing a decline in walking soon or not so soon.
As I hobble around, I realize how much I am going to need assistance. Also, it will take a while to move into Maitri. Currently, there's a room available. Still, there's paper work to complete, doctor's records to send in, all manner of agreements to sign and verify. Also, there's my apartment that needs to be emptied. I am so glad that I started asking people three months ago about what they'd like to have from my home. That's a good start to distributing my worldly goods. It's also just a beginning. There are many, many things that will need good homes.
My plans are to start moving into Maitri while I have September and October to empty my apartment. But what about my feelings of leaving here and stepping into my final home? The first word that comes to mind is: gratitude. I am going to need help and that's what Maitri offers. Knowing that I will be taking care of myself by leaving this apartment makes it much easier to move. Will I have remorse later on? I doubt it. I will certainly have happy memories, but I don't feel remorse looming. I am not going to get better. As yesterday advanced, I realized that I didn't have a shred of ambiguity about moving. This is something that I am wanting to do from the very core of my being.
I asked myself whether I was just having a rough morning and was caving in to panic in my own organized way. So I called a couple of close friends and talked with them about my difficulty walking and my yearning to move. What I heard from them was support and understanding. As I listened to myself talking with them, I sounded centered, grounded. Still, it required a lot of emotional effort to make such a big decision. In fact, it was way too much for me to think about or stay wrapped in for the course of the day. Fortunately, I had a major escape valve: off an on during the morning and afternoon, I read a really well-plotted detective story that takes place in the Marais in Paris. Reading about other people's problems really helped. When I had too much of me, I reached for the adventures of Amiee Leduc as she worked her way through a complex pattern of murders that used the Musee Picasso, Cafe Bofinger, the Rue Rossier and many other places that I've visited, wandered along etc. in my own trips to Paris. It was like changing channels: I'd attend to my planning issues, then, switch to characters who were facing betrayal, homicide, false identity, etc.
Today, Sunday, is more serene. I've talked to more people about my difficulty walking. My body has continued to support the decision to move from my apartment. After I spell check this entry and post it, I'll reach for the intake packet and start filling out my application to Maitri.
Thursday, September 3, 2009
Eileen and I went to see Dr. Barani at UCSF Mt. Parnassus on Tuesday afternoon. His task was to take a look at me and see if my pelvic tumor could be radiated to shrink it for better mobility and pain control. Since this was the first time he'd seen me, and since my last CT and MRI scans were taken in May, no one expected any major decisions to be made that day. Walking into the hospital, I had a couple of creepy moments as I recalled entering the same hospital for chemo many months prior. Especially, I remembered what it was like to stagger out of the hospital into Gaetano's car for my ride home, racked with nausea, dizziness, weakness, fatigue. Then I stepped through those memories and headed for Radiation Oncology.
The visit with Dr. Barani turned into Radiology 101: An Introductory Course. Basically, he told me about what to expect from treatment planning to the impact of radiation on specific parts of my body. Starting with the overall procedure, he said that the treatments would be strong rather than weak and they would be done quickly rather than extended out over several weeks. His initial sense was that I would get a treatment every day, five days a week, for three weeks. Fifteen treatments in total. By giving me higher doses, he would also risk greater toxicity.
As for impact to the various parts of my body, I could expect the following risks to the following places. Radiation burns the skin so my pelvic skin would be affected and treated with gel pads to ease the stinging. This would last during the treatment period and for two to four weeks after treatment. There are no expected long term effects. Lymph nodes hit by the radiation would be damaged and this would affect their ability to cleanse my right leg with lymphatic fluid which would create edema (watery swelling of the calf, ankle and foot due to poor circulation). An open question would be how much the lymph nodes and their circulatory passages could repair themselves, or not. During treatment the bladder would send me the message--it's time to pee!--more often. Worst case would be a short period of incontinence whose solution is: diapers. In conspiracy with the bladder, my prostate would send urgent, frequent messages about urinating. Again, worst case solution during the time of treatment might be a Foley catheter.
The biggest risk comes from possible damage to the large and small bowel and rectum. Depending on how much the tumor has penetrated the walls of the bowels and rectum, killing the tumor cells would potentially weaken the walls of my excretory system. This could be truly dangerous and might involve surgical repair. Of all the issues Dr. Barani raised, this possibility was the most frightening, damaging and risky.
What happens next? I've been scheduled for an MRI mid next week and CT scans for my pelvis and thigh will also be scheduled. Once we have the scans, Dr. Barani will be able to give a more informed assessment. Once I hear his evaluation, I'll be able to make a more informed decision about what to do. Of course, I'd like to walk for many more months. After my experience this week of not being able to hobble for a block on a couple of occasions, I am starting to face not reduced mobility, rather immobility. It's is a very difficult prospect. I turn away from it after every short, incredulous realization. But, this is how I absorb really big fears: a blip at a time. Back in the worst days of AIDS, we used to call it Terror Management.
Note: I happened to read the previous posting and was startled by the number of syntax errors. I spellcheck these drafts and review them prior to posting them. Was I on drugs? It annoyed me to see the number of typing mistakes that crept into the text, especially toward the end of the posting. Quality control never stops.
Tuesday, September 1, 2009
It's been a scary and confusing past few days. Without my noticing it consciously, my pain management safety net quietly unraveled this past weekend and early part of this week. I use Fentanyl transmittal patches that release an opiate into my skin over a three day period. Then I replace them. I've used Fentanyl for the past eleven months and it is my basal pain medication; meaning, the basic drug that I use all the time with no changes in dosage. There's a change when the tumor creates more pain at which time we adjust the dosage higher. That last happened a few months ago when I went from 150 mgs to 300 mgs. Typically, I stabilize with the new levels very quickly and stay at that amount for several months. If I have sudden, unexpected discomfort, I use Morphine Sulphate for breakthrough medication. One or two of these pills kick in over a 20 to 30 minute period, and the pain goes away.
Early last week, I was having trouble walking to lunch which is four blocks from my office, then I felt better in the afternoon. Later in the week, I was hobbling in the morning so I started taking two morphines before going into work, and I started using a cab to get to work after decades of public transportation. On Friday of last week, I ended up taking three morphines in the morning, three in the evening followed by a lovely, spirited dinner with my friend Sarah and her daughter Lindsay who were visiting here from Santa Fe and Los Angeles. Saturday started with four morphines in the morning and more wonderful time with Sarah and Lindsay who came to see me in my apartment. Sunday, four morphines in the morning, and a movie with Philip and Geol followed by fine conversation with Philip.
After Philip left, I thought about shopping for groceries. Based on how my body felt, I realized that I could not comfortably walk to the store which is seven blocks away. I'd never had that realization: I could not get myself to the store under my own power. It was just too painful to walk. Then I thought about going into work the next morning: I could have the cab drop me off right in front of my high rise and get breakfast in the coffee shop downstairs rather than pick up a bagel a block away. So that's what I did. Four morphines before I left the apartment. Meanwhile all these opiates are causing me to be uncommonly thirsty. Dry mouth from about 4 a.m. on regardless of how much water I drink during the night. Once a work, I cannot get comfortable. I have been grateful for these past months over how my office chair and desk height are set at maximally comfortable levels. Not on Monday. So I take the four morphines that I now routinely carry with me. After half an hour, I am feeling no effect. And I have no more pain medication on me. So I write to Lisa, my primary care physician and explain the escalation in my self-medication as well as the fact that I am not getting relief.
Then, I head home to get take more medication because I am seriously hurting. The pain is 6 or 7 on a scale of 10. Once at home, I take three more morphines (total of eleven in the past five hours) and lay down for a nap. Nap is what I do for the rest of the afternoon; sleep, and groggy interludes in between. I do everything but drool and I feel very drugged. My last cognitive act of the day is to write to Lisa and explain that I've taken almost three times as much morphine as ever before but with diminishing results. In fact, the results were dreadful: no relief and totally doped out.
Early Tuesday morning, Lisa responds, "Why don't you come into the office today. As soon as possible." One of the amazingly responsive aspects of her practice is that you can usually get an appointment on the same day if you have an emergency. So at 11:30 this morning, I am in Lisa's office and she's explaining the difference between basal pain management and breakthrough pain management. "When I hear you say that you aren't getting relief from your breakthrough pain meds, I know that means that your basal pain meds have failed you." So, she suggests that I increase my Fentanyl patches by two. Rather than applying three patches, I will now wear five.
That's what I do. I come home and add two patches to my left side. Within a few hours, I can feel the results. I turned out to be a busy day. I had the assessment for radiology on my pelvic tumor early in the afternoon, and therapy at 4:00 p.m. By the time I left therapy, I could walk up Castro Street with an easy gait that was unimaginable on Sunday. The subject we explored in therapy was how can I listen to my body so that I hear the shift in medication needs? On the one hand, it's subtle and I've never been through this before. On the other hand going from one or two morphines every few days to four or more pills in the morning is a gross increase that I was most certainly aware of. And there's always the ultimate reminder: pain. If I'm in pain, a profound change has occurred. My ongoing task is to stay alert to the shifts that my body tells me about. As of this evening, I feel much, much improved. My spirits are up, I'm excited about a couple of projects that are knocking on my door, I look forward to returning phone calls and emails. Most important, I don't hurt as my basic reality. What a difference good diagnosis can make. Thank you Lisa! Thank you.
As for the radiation assessment, that will be the subject for tomorrow's entry. Basically, good news although the procedure is not without some caution. But, details to follow.