Marty was moved from Palliative on the 7th floor to Pediatrics on the 3rd. Kind of weird, but they assured us there are often adults in Pediatrics. The move was based on hospital politics and really had nothing to do with Marty in particular. Turns out Pediatrics isn't as nice as Palliative, but what can you do.
The word on visiting is : Marty says to call him on his cell and leave a message if you want to come visit. (He does not have caller ID.) When he feels well he will listen to his messages and call people back to arrange times to visit.
Although you may be tempted, please do not bring Marty any food right now. His mom Anne is on top of the food thing, and he already has SO MUCH FOOD and there is nowhere to put it. If you really really want to bring food, you can check in with Marty and maybe bring dinner (if you are visiting in the evening). But please don't bring dinner unless he says so.
As his last radiation treatment is Thursday April 21, Marty will be in the hospital until Friday April 22nd at least. And I suspect he will be there until after the long weekend, approx Tuesday April 26. Hospital life is drag, so do try to come visit if you can.
-Amy
Not much to report. APRIL 14, 2011
I am here with Marty in the hospital today, after spending the night. Yesterday he wasn't feeling well so he skipped his radiation appointment. Today he will get radiation again and meet with the radiation oncologist to discuss things. His pain medications seem to be working, though some of them still make him loopy. His coughing is sometimes severe. He is tired often, but not always. I will try to post more after today's conversation with the doctors.
Comments to be enabled
Sunday, April 10, 2011
Hi,
It is Amy. I am trying to enable the commenting option so that anyone can comment on a post and everyone can see it. This is a test post.
-Amy
It is Amy. I am trying to enable the commenting option so that anyone can comment on a post and everyone can see it. This is a test post.
-Amy
April 5, 2011and April 8, 2011, posts from email
Hi Everyone,
Marty has asked me to do some blogging for him (these have already been sent via email):
April 5, 2011
After two cycles of chemotherapy, Marty has stopped doing chemo as it was not really effective and was making him tired and weak.
He has been having a lot of pain in his shoulder and scapula, and so he was admitted at Lions Gate in North Vancouver in the Palliative Ward.
He is staying there for a few days until he [and the doctors and nurses] can arrive at an effective regimen of pain medicine, ie one that allows him to be pain free and also lets him still be alert and not loopy. He is trying many different drugs which act in many different ways, including muscle relaxers, drugs that target nerves, opiates, and other things. The palliative doctor is very kind and warm and feels confidant that a pain-free solution is achievable. Marty may get radiation treatment to target the tumor which is likely causing the severe shoulder and scapula pain. He may also begin an oral drug which acts similar to the previous Sutent drug which he took for all of 2010.
If you are local, Marty is accepting visitors throughout the day. Please keep visits to under an hour. Realize that when you show up, he may be alert and pain free, but he may also be sleeping, loopy from the pain medicine, or in pain. Sometimes Marty answers his calls and texts.
That is all I have got time for right now. Hopefully more info in the near future.
April 8 2011
Marty had his first radiation treatment today and will have 9 more over the next couple weeks. His parents Anne and Don were with him, and so was Carolyn. It was a long day for him as he went from Lion's Gate in North Vancouver to BC Cancer Agency in Vancouver for his treatment, and there was a lot of waiting and running around to do. It was a beautiful spring day and he got a little time outside in the sun. He is probably going to hold off on the oral cancer treatment pill during radiation, as recommended by the radiation oncologist, but he still has to discuss this change in treatment with his regular oncologist.
I saw Marty this evening for a few hours. We ate dinner in the nice kitchen area on the ward with a few other friends who had come to visit. I think the new regimen of various medications is working out, as Marty was not complaining about pain and was chatting about this and that. Though he says the pain does come and go, so it is not clear exactly what is going on.
Marty would like everyone to call him on his cell before coming to visit, and limit visits to about an hour. Sometimes Marty answers his phone and sometimes he doesn't. Do not take it personally, just try again later. (There is not internet in his room, so he has not been checking email for some time.)
Tomorrow - Friday - Marty and I are going out for dinner, so it is probably not a good time to come visit. The weekend is better as he won't have any radiatin treatments lined up. His brother Phil is arriving from Calgary on Saturday for a couple days.
Also, of there are people whose names you want to be on this list, send them to me and I will include them on future updates. Thanks everyone for your help and support. It is very appreciated, even if it is not always acknowledged.
-Amy
Marty has asked me to do some blogging for him (these have already been sent via email):
April 5, 2011
After two cycles of chemotherapy, Marty has stopped doing chemo as it was not really effective and was making him tired and weak.
He has been having a lot of pain in his shoulder and scapula, and so he was admitted at Lions Gate in North Vancouver in the Palliative Ward.
He is staying there for a few days until he [and the doctors and nurses] can arrive at an effective regimen of pain medicine, ie one that allows him to be pain free and also lets him still be alert and not loopy. He is trying many different drugs which act in many different ways, including muscle relaxers, drugs that target nerves, opiates, and other things. The palliative doctor is very kind and warm and feels confidant that a pain-free solution is achievable. Marty may get radiation treatment to target the tumor which is likely causing the severe shoulder and scapula pain. He may also begin an oral drug which acts similar to the previous Sutent drug which he took for all of 2010.
If you are local, Marty is accepting visitors throughout the day. Please keep visits to under an hour. Realize that when you show up, he may be alert and pain free, but he may also be sleeping, loopy from the pain medicine, or in pain. Sometimes Marty answers his calls and texts.
That is all I have got time for right now. Hopefully more info in the near future.
April 8 2011
Marty had his first radiation treatment today and will have 9 more over the next couple weeks. His parents Anne and Don were with him, and so was Carolyn. It was a long day for him as he went from Lion's Gate in North Vancouver to BC Cancer Agency in Vancouver for his treatment, and there was a lot of waiting and running around to do. It was a beautiful spring day and he got a little time outside in the sun. He is probably going to hold off on the oral cancer treatment pill during radiation, as recommended by the radiation oncologist, but he still has to discuss this change in treatment with his regular oncologist.
I saw Marty this evening for a few hours. We ate dinner in the nice kitchen area on the ward with a few other friends who had come to visit. I think the new regimen of various medications is working out, as Marty was not complaining about pain and was chatting about this and that. Though he says the pain does come and go, so it is not clear exactly what is going on.
Marty would like everyone to call him on his cell before coming to visit, and limit visits to about an hour. Sometimes Marty answers his phone and sometimes he doesn't. Do not take it personally, just try again later. (There is not internet in his room, so he has not been checking email for some time.)
Tomorrow - Friday - Marty and I are going out for dinner, so it is probably not a good time to come visit. The weekend is better as he won't have any radiatin treatments lined up. His brother Phil is arriving from Calgary on Saturday for a couple days.
Also, of there are people whose names you want to be on this list, send them to me and I will include them on future updates. Thanks everyone for your help and support. It is very appreciated, even if it is not always acknowledged.
-Amy
Retreat (rĭ-trēt')
Tuesday, December 7, 2010
definition: A period of group withdrawal for meditation, or study.
So I recently went on a retreat in Whistler, BC facilitated by the Callanish Society.
It was exactly what I was looking for. The facilitators carefully and compassionately created and held a space for expression, growth, sharing, and strengthening.
Myself and 7 beautiful women from around the country dove deep into sorrow, loss, and death. It was truly amazing to share with others riding the razor's edge. I'd recommend this type of healing and exploration to anyone. Unfortunately though you have to be part of the "cancer club" first; which I don't recommend at all. This was the 54th retreat that the Callanish Society has created, and just like the participants they continue to grow, learn and build upon the collective experience - carrying our stories along the way.
This type of experience and healing could and ought to be a part of a more wholistic health care system in the future. These retreats are heavily subsidized by kind contributions from caring people. The Callanish Society is a registered charity.
Please consider donating so that others in need can have access to this.
DONATE
To those on my (HEALING TEAM) I also recommend checking out some of the Callanish Newsletters to get a better idea of what they are all about that I might not be able to convey with my own words. This experience really resonated with me and I think every community can build a similar capacity to help their own when in need. Perhaps we can discuss this at the upcoming Soul Therapy Celebration on the 19th of December.
So I recently went on a retreat in Whistler, BC facilitated by the Callanish Society.
It was exactly what I was looking for. The facilitators carefully and compassionately created and held a space for expression, growth, sharing, and strengthening.
At Callanish, we vow not to prescribe a right or correct way to navigate through, or heal from the experience of cancer, but more provide an invitation to delve into the territory of the heart and soul, to uncover and recognize a wholeness that actually exists no matter how ill the body is, an integrity that has always, and will always, exist regardless of physical illness or health, in spite of whether we live or die. - Janie Brown
Myself and 7 beautiful women from around the country dove deep into sorrow, loss, and death. It was truly amazing to share with others riding the razor's edge. I'd recommend this type of healing and exploration to anyone. Unfortunately though you have to be part of the "cancer club" first; which I don't recommend at all. This was the 54th retreat that the Callanish Society has created, and just like the participants they continue to grow, learn and build upon the collective experience - carrying our stories along the way.
This type of experience and healing could and ought to be a part of a more wholistic health care system in the future. These retreats are heavily subsidized by kind contributions from caring people. The Callanish Society is a registered charity.
Please consider donating so that others in need can have access to this.
DONATE
To those on my (HEALING TEAM) I also recommend checking out some of the Callanish Newsletters to get a better idea of what they are all about that I might not be able to convey with my own words. This experience really resonated with me and I think every community can build a similar capacity to help their own when in need. Perhaps we can discuss this at the upcoming Soul Therapy Celebration on the 19th of December.
Seasons change, Nothing stays the same.
Thursday, October 21, 2010
Well, the delay in my writing means I was busy all summer having fun and staying healthy! Flying my paraglider with my fellow winged' monkeys and mountain biking were the main activities of choice. I threw in a few nights of dancing to celebrate my body and the amazing things it can do.
Now comes the season of retreat and dormancy. Withdrawing energy into the roots in cyclic knowledge that it will once again be released when the timing is right. I am looking forward to some deeper introspection and planning, now that the pace of things is slowing down. Probably some more frequent postings here too.
As far as medical details go, here is the update. Sutent is still holding the disease steady and we are now looking in the direction of another targeted therapy as the next course of action. Namely Iressa. It's another targeted molecule that blocks a signaling pathway preventing the proliferation of the cancer cells. Again, not a cure, but will give me more quality time. This treatment involves starting with a genetic test to see if I have what is called an EGFR mutation. This will let us know the relative efficacy of the drug. Naturally, it comes with a list of side effects, but if my body handles it like I did with Sutent it shouldn't get in the way of living.
On the complementary health side of things I am continuing to incorporate other strengthening modalities including, acupuncture, yoga, qigong, dancing, and of course nutrition as my main medicine. Food still remains the one thing that I can get instant feedback from. My garden is still pumping out richly coloured kale and chard that keeps a smile on my face.
Well, that's probably enough of an update for now. Thanks for checking in and thank you to all my (Healing Team) members - past, present and future. Let's keep engaging in the NOW while empathizing into a sustainable beyond.
m
Now comes the season of retreat and dormancy. Withdrawing energy into the roots in cyclic knowledge that it will once again be released when the timing is right. I am looking forward to some deeper introspection and planning, now that the pace of things is slowing down. Probably some more frequent postings here too.
As far as medical details go, here is the update. Sutent is still holding the disease steady and we are now looking in the direction of another targeted therapy as the next course of action. Namely Iressa. It's another targeted molecule that blocks a signaling pathway preventing the proliferation of the cancer cells. Again, not a cure, but will give me more quality time. This treatment involves starting with a genetic test to see if I have what is called an EGFR mutation. This will let us know the relative efficacy of the drug. Naturally, it comes with a list of side effects, but if my body handles it like I did with Sutent it shouldn't get in the way of living.
On the complementary health side of things I am continuing to incorporate other strengthening modalities including, acupuncture, yoga, qigong, dancing, and of course nutrition as my main medicine. Food still remains the one thing that I can get instant feedback from. My garden is still pumping out richly coloured kale and chard that keeps a smile on my face.
Well, that's probably enough of an update for now. Thanks for checking in and thank you to all my (Healing Team) members - past, present and future. Let's keep engaging in the NOW while empathizing into a sustainable beyond.
m
Best Before Date and Birthdate Collide
Friday, July 23, 2010
Well it's been six months since I was told I may only have six months to live without any treatment, and it's also my birthday. Feeling pretty good today. I think I'll be out climbing later and hopefully some dancing this weekend too :)
As far as an update goes, yesterday's results indicate yet another tie game between myself and the unwanted visiting team. The CT scan shows some shrinkage in a few of the nodules in my chest and there is a new one in my right femur. Hopefully it will be a while or never that they have to attach wheels to me. I am also taking an IV infusion of Zoledronic Acid now which builds up bones, so hopefully no breaks. This drug gave me interesting fevers for a few nights and was overall tolerable. One possible side effect of this drug however is that my jaw might fall off, which I imagine could be difficult for eating. I'll have to keep an eye on that.
My mental state and capacity has come a long way from six months ago. It's really amazing how the mind can form new connections and perspectives. You just have to be patient and give it time. Don't get me wrong though. Still some major funk to work through, and I'm just the person to do it.
Once again, thanks for checking in. Keep the good vibes coming.
As far as an update goes, yesterday's results indicate yet another tie game between myself and the unwanted visiting team. The CT scan shows some shrinkage in a few of the nodules in my chest and there is a new one in my right femur. Hopefully it will be a while or never that they have to attach wheels to me. I am also taking an IV infusion of Zoledronic Acid now which builds up bones, so hopefully no breaks. This drug gave me interesting fevers for a few nights and was overall tolerable. One possible side effect of this drug however is that my jaw might fall off, which I imagine could be difficult for eating. I'll have to keep an eye on that.
My mental state and capacity has come a long way from six months ago. It's really amazing how the mind can form new connections and perspectives. You just have to be patient and give it time. Don't get me wrong though. Still some major funk to work through, and I'm just the person to do it.
Once again, thanks for checking in. Keep the good vibes coming.
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