I felt a little better today than yesterday. I hope that I will feel a little better tomorrow than today. I am trying to crawl out of the pit of despair. The amazing expressions of love and support that I have received have helped - thank you.
I heard today from the last clinical trial that I was considering and I am not eligible. So I am not looking at clinical trials anymore. I am OK with that - I wasn't sure I was willing to travel somewhere else for an experimental treatment, the treatment regimens are often quite grueling, and they usually don't help anyway.
I also don't want to do any more chemo. I know I've said that before, but this time I mean it! This last round was the last straw. I've been seeing a therapist who specializes in cancer and terminal illness. I saw her today and she made me feel better by telling me that, based on what she has learned, nobody really understands chemo fatigue unless they've experienced it. It's not like normal fatigue. It's not the same as depression. People, including myself, often think that one should be able to power through fatigue through willpower, positive thinking, etc. I know I sometimes feel like a whiny fraud because I can't explain why I feel so bad, even though I'm not in great physical pain. Her basic message was that I should give myself a break.
So my options are narrowing, but that's OK. I can focus now on trying to maximize my quality of life, managing my pain symptoms, and just trying to enjoy life as long as possible.
Ethan
Wednesday, March 16, 2011
Some sad stuff
I am ready to die. I don't mean to alarm or upset people, or to be melodramatic. I just want people to know that, if I die, I am at peace with that. I wouldn't want people to mourn for me. I mean, feel free to mourn for yourselves if you miss me, but there's no need to feel sorry for me. I've had a good life, thanks to my family and friends, and I'm ready to move on. I feel that my job now is to get from here to the end in as dignified and graceful a way as possible.
I think it makes more sense to feel sorry for the people who are left behind than for the person who dies. After I die, I won't have to worry about anything anymore. I've tried to get my affairs in order as much as I can, but my loved ones will have to clean up my mess and carry on. That seems harder than my part.
Obviously my first choice would be to recover and be healthy. Unfortunately that doesn't seem to be an option for me. So my options are to (a) live in a constant state of sickness and suffering, sometimes feeling better, sometimes worse, but never great; or (b) die. I've done the former for almost a year now and I'm ready to try the latter (although I understand there are no refunds).
It's been almost one year since this ordeal started (I first felt the abdominal pain), and the anniversary feels significant. It feels like the finish line of a long race. I can't imagine doing another lap around this track, especially knowing that the next year would likely be harder than this past one.
But dying is easier said than done. I have a "DNR" (Do Not Resuscitate) order on my desk, but that's a passive measure. I've considered suicide, but Grace has asked me not to do something without consulting her, and I will respect her request.
I wonder if getting the chemo last week was a mistake. It worked in that it greatly reduced the bone pain, but since the fatigue hit last Friday I have been in the pit of despair. As I've said before, as awful as the pain is, the fatigue is worse, because I can't think clearly or do anything and then I feel useless - like I'm wasting time, using up resources and people's time, energy, and goodwill, and not contributing anything useful to anybody. I know Grace and my mom are willing to continue to support me, but this is obviously very hard on them. I would like to let them move on too.
When the bone pain was getting out of control before the last chemo, I actually felt happy in a weird way because I felt that maybe we were breaking out of the cycle we've been in and reaching a resolution to this situation. When the bone pain receded after the chemo, I sort of felt like I'd missed an opportunity to get off this roller-coaster. If you saw The Lord of the Rings: The Return of the King, there is that overly long farewell scene at the end where Bilbo and Frodo are going to board the Elven ships and sail away from Middle Earth. I felt like Frodo, if he had turned around and realized that the ships had sailed without him.
I've been suffering from anhedonia - inability to take pleasure in things I usually enjoy. Sad things make me sad. Happy things also make me sad, because they make me think about things I would like to do but can't. Even the things that give me pleasure when all else fails - my kids - sometimes make me sad lately, because I feel too sick and tired to play with them, and that really hurts.
I can think of only two moments of real happiness lately. One was last Saturday, sitting on the red love seat in the TV room with Seth and my dad (before my dad left to go back to Maine), watching the Pac-10 championship game, when Washington forced overtime with Arizona and then their star guard Isaiah Thomas (no relation to the former Detroit Pistons star) hit the buzzer-beating jump shot to win the game. The other was tonight, when I heard Miles get up from bed and I went into his bedroom and lay down with him until he fell back asleep.
I've thought about the possibility of an afterlife recently. As I've written before, I'm too much of a scientific materialist to really believe in disembodied souls, but who knows? It's a comforting thought, and I can see why people embrace it. If there is an afterlife, you know who I'm most looking forward to seeing again? My Grandpa Don Ryan and my dog Pilot.
I hope tomorrow will be a better day. You never know.
Ethan
I think it makes more sense to feel sorry for the people who are left behind than for the person who dies. After I die, I won't have to worry about anything anymore. I've tried to get my affairs in order as much as I can, but my loved ones will have to clean up my mess and carry on. That seems harder than my part.
Obviously my first choice would be to recover and be healthy. Unfortunately that doesn't seem to be an option for me. So my options are to (a) live in a constant state of sickness and suffering, sometimes feeling better, sometimes worse, but never great; or (b) die. I've done the former for almost a year now and I'm ready to try the latter (although I understand there are no refunds).
It's been almost one year since this ordeal started (I first felt the abdominal pain), and the anniversary feels significant. It feels like the finish line of a long race. I can't imagine doing another lap around this track, especially knowing that the next year would likely be harder than this past one.
But dying is easier said than done. I have a "DNR" (Do Not Resuscitate) order on my desk, but that's a passive measure. I've considered suicide, but Grace has asked me not to do something without consulting her, and I will respect her request.
I wonder if getting the chemo last week was a mistake. It worked in that it greatly reduced the bone pain, but since the fatigue hit last Friday I have been in the pit of despair. As I've said before, as awful as the pain is, the fatigue is worse, because I can't think clearly or do anything and then I feel useless - like I'm wasting time, using up resources and people's time, energy, and goodwill, and not contributing anything useful to anybody. I know Grace and my mom are willing to continue to support me, but this is obviously very hard on them. I would like to let them move on too.
When the bone pain was getting out of control before the last chemo, I actually felt happy in a weird way because I felt that maybe we were breaking out of the cycle we've been in and reaching a resolution to this situation. When the bone pain receded after the chemo, I sort of felt like I'd missed an opportunity to get off this roller-coaster. If you saw The Lord of the Rings: The Return of the King, there is that overly long farewell scene at the end where Bilbo and Frodo are going to board the Elven ships and sail away from Middle Earth. I felt like Frodo, if he had turned around and realized that the ships had sailed without him.
I've been suffering from anhedonia - inability to take pleasure in things I usually enjoy. Sad things make me sad. Happy things also make me sad, because they make me think about things I would like to do but can't. Even the things that give me pleasure when all else fails - my kids - sometimes make me sad lately, because I feel too sick and tired to play with them, and that really hurts.
I can think of only two moments of real happiness lately. One was last Saturday, sitting on the red love seat in the TV room with Seth and my dad (before my dad left to go back to Maine), watching the Pac-10 championship game, when Washington forced overtime with Arizona and then their star guard Isaiah Thomas (no relation to the former Detroit Pistons star) hit the buzzer-beating jump shot to win the game. The other was tonight, when I heard Miles get up from bed and I went into his bedroom and lay down with him until he fell back asleep.
I've thought about the possibility of an afterlife recently. As I've written before, I'm too much of a scientific materialist to really believe in disembodied souls, but who knows? It's a comforting thought, and I can see why people embrace it. If there is an afterlife, you know who I'm most looking forward to seeing again? My Grandpa Don Ryan and my dog Pilot.
I hope tomorrow will be a better day. You never know.
Ethan
A dream
Monday night I had a dream that felt significant. I bought a big beautiful house in the Mission District of San Francisco. The house was previously owned by the Red Hot Chili Peppers and it was great for entertaining - big open kitchen/dining area, big roof deck, etc. In the dream, I was single and childless. I invited over a bunch of friends - Eric & Meredith, Jonathan & Sarah, etc. Everyone loved the house and we had a good time, but then everyone had to go home. Last to leave was Eric. We biked together to the station where he was catching a train or bus. (In the dream I had a really nice mountain bike - where all this material wealth came from was unexplained.) As I turned to head home, I realized with a wave of sadness that I was returning to an empty house and that I would be alone.
At that moment I woke up from the dream. I still felt the sadness, but as I realized where I really was (bed, Bellingham, near Grace), the sadness was swept away by relief and happiness. So I guess I would rather be dying of cancer in Bellingham and with Grace than a playboy bachelor in San Francisco but without Grace. Pretty high praise for Grace from my subconscious!
On a related note, when Grace and my mom took me to the appointment with Dr. Whiting in Seattle on Monday (and they did take me, rather than go with me, as I was semi-comatose), I had a thought that I must have done something right sometime to earn the support of these two strong beautiful women - similar in some ways, different in others, thrown together through caring for me. Well, I guess a mother's love doesn't have to be earned, just not squandered. But Grace had a choice and chose me, for which I will be forever grateful. Although I also feel guilty, like she chose the lemon on the lot, although nobody could have foreseen my health problems. But she did get a beautiful child out of the deal - he is smart and funny and sweet and extra-cute with his new haircut.
Ethan
At that moment I woke up from the dream. I still felt the sadness, but as I realized where I really was (bed, Bellingham, near Grace), the sadness was swept away by relief and happiness. So I guess I would rather be dying of cancer in Bellingham and with Grace than a playboy bachelor in San Francisco but without Grace. Pretty high praise for Grace from my subconscious!
On a related note, when Grace and my mom took me to the appointment with Dr. Whiting in Seattle on Monday (and they did take me, rather than go with me, as I was semi-comatose), I had a thought that I must have done something right sometime to earn the support of these two strong beautiful women - similar in some ways, different in others, thrown together through caring for me. Well, I guess a mother's love doesn't have to be earned, just not squandered. But Grace had a choice and chose me, for which I will be forever grateful. Although I also feel guilty, like she chose the lemon on the lot, although nobody could have foreseen my health problems. But she did get a beautiful child out of the deal - he is smart and funny and sweet and extra-cute with his new haircut.
Ethan
Tuesday, March 15, 2011
Samarium-153
(Grace here.) Ethan, Kathy, and I met with Dr. Whiting @ SCCA yesterday afternoon (thank you, Dr. Whiting! And thank you to his scheduler Sarah who was able to get us in a the last minute). Dr. Whiting is an incredibly knowledgeable person...more importantly, he has made this ordeal much easier with his empathy and kindness. Without going into too much detail -- I'll let Ethan share more later -- one of the most important things that we got out of yesterday was learning about Samarium-153, a form of radiation therapy that goes directly into the bloodstream. It's primary purpose is to give "pain relief in patients with metastatic bone lesions who are having bone pain." The actual drug is called Quadramet. Ethan had external beam radiation therapy last summer, but that was to address very localized pain. The bone pain is much more diffuse now, so EBR is not feasible. However, we're waiting to hear back from Dr. Nestor, our local oncologist, if this therapy is even available in Bellingham (and if Group Health will cover it). The UW's Department of Nuclear Medicine has it. That sounds kind of cool, doesn't it?
Thank you to friends -- far and near (Bunns!) -- for your continued support and good wishes.
~Grace
Thank you to friends -- far and near (Bunns!) -- for your continued support and good wishes.
~Grace
Friday, March 11, 2011
Wednesday, March 9, 2011
Viking sports update
In their first tournament of the spring season against Division II competition, the WWU men's golf team (ranked #2 in Division II) came from behind to beat Chico State (ranked #1 in Division II). Pretty cool!
http://wwuvikings.cstv.com/sports/m-golf/spec-rel/030811aag.html
The WWU women's basketball team plays Friday as the #4 seed in the Division II West Regional against #5 seed Alaska Anchorage. The regional will be hosted by top seed Cal Poly Pomona. The Vikings must want revenge after losing to Alaska Anchorage 68-67 in the championship game of their conference (GNAC) last Saturday at WWU. It was their first home loss of the season and dropped their national ranking to #14 in Division II.
http://wwuvikings.cstv.com/sports/w-baskbl/spec-rel/030711aab.html
Ethan
http://wwuvikings.cstv.com/sports/m-golf/spec-rel/030811aag.html
The WWU women's basketball team plays Friday as the #4 seed in the Division II West Regional against #5 seed Alaska Anchorage. The regional will be hosted by top seed Cal Poly Pomona. The Vikings must want revenge after losing to Alaska Anchorage 68-67 in the championship game of their conference (GNAC) last Saturday at WWU. It was their first home loss of the season and dropped their national ranking to #14 in Division II.
http://wwuvikings.cstv.com/sports/w-baskbl/spec-rel/030711aab.html
Ethan
New chemo report
Good news so far! My bone pain has decreased incredibly, despite taking off 25 micrograms of Fentanyl, bringing me back down to 100. Yesterday I could hardly walk even with crutches, I couldn't put on or take off my socks without very painful contortions, and my pain was a 7 to a 9. Today I can get up and move around and the pain is barely noticeable, perhaps a 1. Obviously a huge and encouraging improvement.
Yesterday during and after chemo I was quite spacy and groggy. Grace told me today that she had to ask me things up to 12 times before I would respond. I would fall asleep in the middle of motions, like raising a glass to my lips - fortunately my mom always stopped me from spilling on myself. Sometimes I would come to with no idea of how long I had been out. I was daydreaming while I was half-sleeping, so I would often come to by blurting out something that must have made sense in my daydream, but not to me or the people around me. I also had a surprisingly hard time separating my daydreams from reality. Today I feel less spacey and groggy, and able to have a conversation, but I wouldn't trust myself to drive yet.
The side effects have been exactly as I was led to expect. Less GI upset and "sick to my stomach" feeling, but peripheral neuropathy instead. This morning I washed my hands in cold water and my fingers felt weird and prickly, and it took me a minute to remember about the neuropathy. Later I got something out of the fridge and felt it again - like lots of bee strings, but not that bad. Actually, it's not that painful and fades quickly, although I've read that it gets worse over time. But it still surprises me and it's hard to remember to avoid the things that aggravate it, like cold things, such as (gulp) ice cream. That's a kick in the Nooksack, or rather, the Tillamook (local jokes).
I haven't felt any unusual fatigue yet, but that doesn't usually arrive until after we disconnect the 5FU pump, which we will do tomorrow at noon. I didn't sleep at all last night. Despite all my grogginess during the day, maybe I got enough rest in little naps, or maybe it was the buzz of all the drugs, but when it was time to go to bed I just stayed at my desk, working on emails and blogs and other little errands, and before I knew it the sun was up. I do plan to sleep tonight, whether I feel like it or not.
Ethan
Yesterday during and after chemo I was quite spacy and groggy. Grace told me today that she had to ask me things up to 12 times before I would respond. I would fall asleep in the middle of motions, like raising a glass to my lips - fortunately my mom always stopped me from spilling on myself. Sometimes I would come to with no idea of how long I had been out. I was daydreaming while I was half-sleeping, so I would often come to by blurting out something that must have made sense in my daydream, but not to me or the people around me. I also had a surprisingly hard time separating my daydreams from reality. Today I feel less spacey and groggy, and able to have a conversation, but I wouldn't trust myself to drive yet.
The side effects have been exactly as I was led to expect. Less GI upset and "sick to my stomach" feeling, but peripheral neuropathy instead. This morning I washed my hands in cold water and my fingers felt weird and prickly, and it took me a minute to remember about the neuropathy. Later I got something out of the fridge and felt it again - like lots of bee strings, but not that bad. Actually, it's not that painful and fades quickly, although I've read that it gets worse over time. But it still surprises me and it's hard to remember to avoid the things that aggravate it, like cold things, such as (gulp) ice cream. That's a kick in the Nooksack, or rather, the Tillamook (local jokes).
I haven't felt any unusual fatigue yet, but that doesn't usually arrive until after we disconnect the 5FU pump, which we will do tomorrow at noon. I didn't sleep at all last night. Despite all my grogginess during the day, maybe I got enough rest in little naps, or maybe it was the buzz of all the drugs, but when it was time to go to bed I just stayed at my desk, working on emails and blogs and other little errands, and before I knew it the sun was up. I do plan to sleep tonight, whether I feel like it or not.
Ethan
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