Our latest update is below but first the part I never expected I need to write: we need help.
So here goes:
Dear family, friends, people who love us,
We could use your support.
- We could use some more get well cards.
- Phone calls are a bit too much right now but a simple voice mail on Tad's phone telling him how much you love him would be wonderful.
- Home delivered meals once in a while to give me a break would be so appreciated: http://www.dinewise.com/, or a local place http://www.freshprepkitchens.com/menus.php?page=menus
- Gift certificates at our local spa for myself would be such a welcome gift:
http://www.wellwithinspa.com/gift_certificates_index.html
http://www.teahousespa.com/about.htm - I am exhausted.
- We could use a small slush fund. We mostly have money to cover everything. Tad's insurance is really good - but there are definitely more expenses now than before. For my friends with some extra cash, can you send a check?
- If we get through the next phase - we will need to spend a lot of time in Seattle -- we'll need miles if you've got them. But til then - we'll take this one day at a time.
When Tad was first diagnosed people by the dozens insisted, "If ever you need anything please ask." To be honest I never knew what to ask for til now.
The most moving times for us are when people reach out and express love and support.
Thank you from the bottom of our hearts.
Greg
Now a (crazy) update
Tad is presently taking two medications: these are slow-acting chemotherapy drugs designed to stop the leukemia that couldn't be taken down by the usual, intensive, in-patient chemos he received last year.
Decitabine was first used against this kind of leukemia and showed results in early 2009 - Nexavar was found to be effective against his form of leukemia in June of 2010.
He was diagnosed April 9, 2010.
So in essence he is being kept alive and possibly being cured by two meds that weren't really being used for this disease just three years ago.
Such is the nature of inventions - suddenly something that wasn't there appears and changes everything. Our human brains take time to adapt to and make room for new realities.
Two days ago I spoke to our local doctor's team here in Santa Cruz because I needed some support on pain management for Tad. Before getting back to me they decided to call his cancer team in San Francisco to get more information on his health.
They called me back dumbfounded. The oncology nurse told them the EXACT opposite of what they're telling us: the medicine he's taking is not making him better and the symptoms he is experiencing which we believed to be caused by the chemotherapy are in fact caused by leukemia. Though the meds are hopeful he doesn't have much time to live.
Just last week when we sat in her boss's (the oncologist's) office he told us that for the first time in a very long time there was no visible leukemia in Tad's circulating blood - a very promising sign that the combination is working.
After a long night with no sleep, a "tsunami" on its way to Santa Cruz, several phone calls and some serious back-peddling from the nurse I came to the following conclusions:
- the situation is indeed dire - he could die at any moment
- we are using a last-ditch effort medication combination that may work and may not and with which UCSF is not comfortable at all (there seems to be no documented evidence of this combination even if each of the two meds has shown excellent and unexpected results).
- Tad is at high risk for anything that creeps and crawls
- the oncologists talk up the good points when they converse with us
- they talk up the scary disaster potentials when they converse with other professionals
- they work in a fear-based, litigious culture in which it is customary to share the bare minimum with patients and family
- thus when they shared the disaster scenario with another professional (who happens to adore Tad and has cared for him for years) they couldn't possibly imagine that it would be shared with us.
I once interviewed a medical historian for a radio show I was producing at the time. He told of how in 1982 a doctor from the illustrious Mayo Clinic called the Centers for Disease Control and said he had a patient who had all the symptoms of HIV. The only problem was the patient was a heterosexual female. The doctors at the CDC's told him: "That's impossible. Heterosexual women can't be infected by HIV".
Scientists live in an evidence-based world. They are taught to not have hunches. In order to survive their they must have two strong streaks: a) detail-oriented to the point of being obsessive-compulsive b) self-confidence to the point of being narcissistic.
As a man who listens to intuition and hunches a lot, I can almost date the moment when they lost hope and began to pull back.
As a man who was told for years I was going to die and then one day a drug came along and saved me, I am able to hold hope. We can guess at the future with lots of certainty but she can always surprise us.
Today it seems our difficulty lies in being cared for by people with very little imagination and thus not much hope.
Tad is in a lot of pain, has lost weight, is exhausted, has torrential fevers each night and yet is still smiling, joking, keeping up on certain TV shows and on the various plants poking their heads out of the ground in the yard.
As the sweet nurse at the local hospital said to him this week with tears in her eyes: "It's so easy to love you because your eyes of full of love."
I am down in Santa Cruz nearly full-time now slowly building a community and a cluster of wonderful regular rituals for myself: weekly walks on Seabright Beach with Ron, short walks to Peet's for coffee, bike rides to West Cliff to watch the surfers, meditation at the nearby Zen center.
I continue to prepare for my board exams though less ardently. It's been difficult to focus of late.
This week or next Tad will be getting the fourth round of Decitabine - this is the round at which it attains its full effect since it was designed to be used on elders with this form of leukemia who are too frail to get big guns chemo. We're hoping it will continue to suppress the leukemia and his immune system will grow back.
If it doesn't we're told there really aren't many options left.
Sunday, March 13, 2011
Saturday, February 12, 2011
And the beat goes on...
Tad is in the kitchen doing the dishes. Dinner came after a leisurely afternoon with the two of us working in the garden - with him being careful to avoid putting his hands in dirt and to wash them well once he got in the house. After the dishes he plans on watering the orchids.
This burst of energy comes a little more than a month after the oncologist began introducing end of life language into our discussion and wondered aloud if Tad were "up for more treatment" or "ready to stop".
The medicine that appears to be doing the trick arrived after Tad did the footwork from his hospital bed to get it delivered -- footwork that, in my opinion, some healthcare provider should have done for him.
The result has been far fewer drives to the hospital to get blood parts (probably cut down by 300%), less fatigue, better lab results, less risk of exposure to any icky things on the planet and a general feeling of hope.
The downside has been ongoing, deep bone pains (the battle between leukemia and chemo plays out in bone marrow) which at times set off terrible, debilitating muscle spasms.
Chiropractics don't seem to work. The main remedy -on top of the mandatory but not-so-effective muscle relaxers and pain meds -- is lying down, breathing deep, applying heat and waiting for it to pass. This not always convenient when you're trying to increase the level of normalcy in your life. The pain spasms set off a downward spiral of discouragement, loss of appetite, and general disconnection from the world.
If anyone knows any good remedies - please advise. We're hoping to try acupuncture.
So here are the latest words of wisdom from the Oncologist/Oracle as of this last week:
1 - "You're sort of on your own with this new med - it's experimental and we don't have any data on this."
2 - "You have three options: the new med alone, the new med with half the old med and the new med with all the old med. Which do you prefer?"
3- Once Tad made his choice he replied: "That's probably the best solution".
4 - As he stood up to leave he said: "You're really tough" (the closest we've had to a pep talk from him in a good long time).
He also agreed - at our behest- to send a letter to Seattle to tell them to prepare for a bone marrow transplant. We hope to go up there for a consultation soon.
Yesterday we went to our vegetable plot to see how badly the weeds had taken over and to allow me to mentally prepare myself for the next Big Domestic Task. When we arrived we found not only that it had been weeded but that most of it had been tilled and one third of it planted in winter plants: broccoli, onions, kale.
I gently wept with a big dumb smile on my face, knowing which neighbors had kindly stepped in to offer us this gift.
As I go through this process next to my beautiful man I am less and less a believer in god. It seems quite clear to me that getting sick and dying is just one of the many things these bodies do. And when these bodies stop working, there will be nothing left.
Conversely what is also becoming more and more clear is that I experience an incredible mix of joy and tears when I see loving gestures around me, when kindness appears out of nowhere, when gentle support is offered.
And to me that is Godly.
This burst of energy comes a little more than a month after the oncologist began introducing end of life language into our discussion and wondered aloud if Tad were "up for more treatment" or "ready to stop".
The medicine that appears to be doing the trick arrived after Tad did the footwork from his hospital bed to get it delivered -- footwork that, in my opinion, some healthcare provider should have done for him.
The result has been far fewer drives to the hospital to get blood parts (probably cut down by 300%), less fatigue, better lab results, less risk of exposure to any icky things on the planet and a general feeling of hope.
The downside has been ongoing, deep bone pains (the battle between leukemia and chemo plays out in bone marrow) which at times set off terrible, debilitating muscle spasms.
Chiropractics don't seem to work. The main remedy -on top of the mandatory but not-so-effective muscle relaxers and pain meds -- is lying down, breathing deep, applying heat and waiting for it to pass. This not always convenient when you're trying to increase the level of normalcy in your life. The pain spasms set off a downward spiral of discouragement, loss of appetite, and general disconnection from the world.
If anyone knows any good remedies - please advise. We're hoping to try acupuncture.
So here are the latest words of wisdom from the Oncologist/Oracle as of this last week:
1 - "You're sort of on your own with this new med - it's experimental and we don't have any data on this."
2 - "You have three options: the new med alone, the new med with half the old med and the new med with all the old med. Which do you prefer?"
3- Once Tad made his choice he replied: "That's probably the best solution".
4 - As he stood up to leave he said: "You're really tough" (the closest we've had to a pep talk from him in a good long time).
He also agreed - at our behest- to send a letter to Seattle to tell them to prepare for a bone marrow transplant. We hope to go up there for a consultation soon.
Yesterday we went to our vegetable plot to see how badly the weeds had taken over and to allow me to mentally prepare myself for the next Big Domestic Task. When we arrived we found not only that it had been weeded but that most of it had been tilled and one third of it planted in winter plants: broccoli, onions, kale.
I gently wept with a big dumb smile on my face, knowing which neighbors had kindly stepped in to offer us this gift.
As I go through this process next to my beautiful man I am less and less a believer in god. It seems quite clear to me that getting sick and dying is just one of the many things these bodies do. And when these bodies stop working, there will be nothing left.
Conversely what is also becoming more and more clear is that I experience an incredible mix of joy and tears when I see loving gestures around me, when kindness appears out of nowhere, when gentle support is offered.
And to me that is Godly.
Thursday, January 27, 2011
Sink or swim...
Last week Tad developed a G.I. problem and we had to have an appointment with the big Kahuna at UCSF. For the first time -- and in a fashion that appeared to be coming out of left field -- he began to introduce end-of-life language.
This seemed incoherent because he was telling us that the slow-acting chemo is actually doing its job of keeping the level of leukemia in check and quite low (around 7%) in his peripheral blood. Also in the same conversation he talked about the promising outcomes of Nexavar (the other name for the afore-mentioned Sorafenib) - a new med we are trying to get our hands on which was discovered to be effective against this particular form of leukemia just last year.
Not surprisingly Tad and I walked away from this conversation with different conclusions and after a few days finally called the hospital to get clarifications.
In a word here is the scoop:
- he is basically living with next to no immune system and could get a life-threatening infection at any time
- the leukemia could mutate at any time causing the chemo to become ineffective very rapidly
- he could start bleeding at any time and not be able to stop.
In essence - the second-to-last ditch med (Decitabine) is doing its job but it needs four to five months for its full effect. And the last-ditch med (Nexavar) is our last hope but hasn't been started and WILL have side effects.
Of course Walgreens has been pussy-footing around with the Nexavar script for over 10 days. When we finally took things into our own hands we discovered that in fact the manufacturer will only work with one pharmacy and it is not Walgreens. (You'd think Walgreens would have noticed this instead of just saying "It should be here any day now".) So yesterday, while getting a blood transfusion in our local hospital Tad called both entities and began to fix a corporate misunderstanding that has gone on for nearly two weeks.
The original script was actually written in November. It went through two insurance refusals first.
(This is just another of a string of mis-communications and mishaps we have had to manage in this piecemeal healthcare system that Congresswoman Bachmann just called "the best in the world" in her response-speech to the State of the Union address. Clearly she doesn't get out much. I can only imagine how complicated it gets for peoople without health insurance.)
I have just resigned from my two biggest volunteer stints and am living in Santa Cruz nearly full time - while still preparing for licensing exam number 2.
More than ever I am aware of my difficulties asking for help - or more precisely identifying what or how to delegate to others.
Lately Tad has been confused and in a lot of pain - the meds he takes for the pain make him a bit loopy and out of sorts at times. For the first time this week he was not able to drive himself to the hospital for his every-other-day intake of fresh blood. It appears to have been due to a medication mistake.
He and I have begun talking about having reminders and possibly people around him to help out - a notion he is not comfortable with. We've also begun our own painful discussion about what to do with his belongings and his ashes. Last night I cried myself to sleep.
Here are two of my favorite astrology columns for Tad this week:
1) "Are you concerned about finances, reviewing cash flow, considering consulting an advisor for help with taxes, assets, resources? Do not remain silent. Have at least one person you can speak with. Also, it’s time to consider end-of-life (you are not dying) preparations, so those who remain here on Earth know what to do. What do you want done after you die? This includes resources."
2) ""Turning toward the storm cloud, I lost sight of the bird." Let this haiku-like poem by Julius Lester serve as a cautionary tale, Cancer. You're at risk of getting so fearfully fixated on a storm cloud that you may lose track, metaphorically speaking, of a rare and beautiful bird. And the thing is, the storm cloud isn't even harboring that big a ruckus. It will pour out its flash and dazzle quickly, leaving virtually no havoc in its wake. That's why it would be a shame for you to let your perverse fascination with it cause you to get separated from a potential source of inspiration."
This seemed incoherent because he was telling us that the slow-acting chemo is actually doing its job of keeping the level of leukemia in check and quite low (around 7%) in his peripheral blood. Also in the same conversation he talked about the promising outcomes of Nexavar (the other name for the afore-mentioned Sorafenib) - a new med we are trying to get our hands on which was discovered to be effective against this particular form of leukemia just last year.
Not surprisingly Tad and I walked away from this conversation with different conclusions and after a few days finally called the hospital to get clarifications.
In a word here is the scoop:
- he is basically living with next to no immune system and could get a life-threatening infection at any time
- the leukemia could mutate at any time causing the chemo to become ineffective very rapidly
- he could start bleeding at any time and not be able to stop.
In essence - the second-to-last ditch med (Decitabine) is doing its job but it needs four to five months for its full effect. And the last-ditch med (Nexavar) is our last hope but hasn't been started and WILL have side effects.
Of course Walgreens has been pussy-footing around with the Nexavar script for over 10 days. When we finally took things into our own hands we discovered that in fact the manufacturer will only work with one pharmacy and it is not Walgreens. (You'd think Walgreens would have noticed this instead of just saying "It should be here any day now".) So yesterday, while getting a blood transfusion in our local hospital Tad called both entities and began to fix a corporate misunderstanding that has gone on for nearly two weeks.
The original script was actually written in November. It went through two insurance refusals first.
(This is just another of a string of mis-communications and mishaps we have had to manage in this piecemeal healthcare system that Congresswoman Bachmann just called "the best in the world" in her response-speech to the State of the Union address. Clearly she doesn't get out much. I can only imagine how complicated it gets for peoople without health insurance.)
I have just resigned from my two biggest volunteer stints and am living in Santa Cruz nearly full time - while still preparing for licensing exam number 2.
More than ever I am aware of my difficulties asking for help - or more precisely identifying what or how to delegate to others.
Lately Tad has been confused and in a lot of pain - the meds he takes for the pain make him a bit loopy and out of sorts at times. For the first time this week he was not able to drive himself to the hospital for his every-other-day intake of fresh blood. It appears to have been due to a medication mistake.
He and I have begun talking about having reminders and possibly people around him to help out - a notion he is not comfortable with. We've also begun our own painful discussion about what to do with his belongings and his ashes. Last night I cried myself to sleep.
Here are two of my favorite astrology columns for Tad this week:
1) "Are you concerned about finances, reviewing cash flow, considering consulting an advisor for help with taxes, assets, resources? Do not remain silent. Have at least one person you can speak with. Also, it’s time to consider end-of-life (you are not dying) preparations, so those who remain here on Earth know what to do. What do you want done after you die? This includes resources."
2) ""Turning toward the storm cloud, I lost sight of the bird." Let this haiku-like poem by Julius Lester serve as a cautionary tale, Cancer. You're at risk of getting so fearfully fixated on a storm cloud that you may lose track, metaphorically speaking, of a rare and beautiful bird. And the thing is, the storm cloud isn't even harboring that big a ruckus. It will pour out its flash and dazzle quickly, leaving virtually no havoc in its wake. That's why it would be a shame for you to let your perverse fascination with it cause you to get separated from a potential source of inspiration."
Friday, January 7, 2011
New Year - New Molecules
It's been over two months since I've shared with family and friends our latest Adventures in Life with Cancer.
As of today life is pretty calm...though that hasn't been the case since my last post early November.
After our great vacation in Arizona and the day before we were scheduled to go to Seattle for a consultation - the doctor conducted a biopsy on Tad's bone marrow that showed cancerous cells, thus rendering him inelegible for the trial transplantation in Seattle. This also meant a lot of running around undoing all the running around I had done to organize this trip (even got Alaska Air to donate his plane ticket!!).
What this really meant was unclear to us. We had been told that if we wait long enough after remission that the cancerous cells would return so this didn't seem to be a big issue (it had been about six weeks). But apparently based on all the nasty chemicals with which they had bombarded his body, this Return of the White-Blood Cell Eaters was too early and not a good sign.
The doctors have put him on two new meds for which his cancer is naive (don't you love this medical jargon?!) and which, joy of joys, are slow-acting and can therefore be done at home pretty much.
So we've stepped off of the really nasty roller coaster of very high hills (a month of hospitalization with no immune system while being vulnerable to any kind of bug spiced up with loss of hair, a pinch of diarrhea and mouth sores) followed by a month of home rest, rinse, repeat to a more gentle roller coaster (mouth sores, night sweats, achy flu-like symptoms mixed in with symptomless periods).
We've gone from an E ride to perhaps a C ride.
This time around the more exhilarating moments have been caused by the hospitals infuriatingly difficult rapport with outpatient treatment for something this complicated. Though they swear up and down that this new protocol which consists of five days of one-hour IV's is "not rocket science" (their words not mine) and is easily done locally in Santa Cruz, their incapacity to coordinate with entities other than themselves is outstanding.
(When I finally got in touch with docs at Seattle to get him up there for the protocol they said to me: "We don't understand - it's taken eight phone calls with UCSF to get nowhere.")
Three days before our first appointment with a Santa Cruz oncologist for some simple blood draws and possible transfusions I called UCSF outpatient clinic just to let them know I was following the plan and wanting to keep them in the loop. An hour later I received a phone call from his nurse's boss insisting I get him up to San Francisco as soon as possible, swearing that he was at death's door and that he needed to be hospitalized immediately - successfully scaring the hell out of me. When I shared this info with Tad he simply said: "I'm staying here for Christmas and will be going to see the local oncologist as planned."
To be honest I guess that was more like an A Ride hill.
While I'm on a rant I feel the need to get a very painful incident off my chest; I've been gnawing at this for weeks.
After the Seattle disappointment Tad returned to UCSF for chemo through a process of calling in each morning to see if there is a bed available and whether today is the day we call in a sitter for the cat, stop everything for a month, tell the neighbors to start watering, throw the bags in the car and go to SF or not. After five days of this they finally found us a bed, we arrived and they put the long plastic tube in his arm that goes over to his heart (a PICC line). Then a "fellow", a sort of visiting doc, came in to announce the new chemo plan. The problem is he started off by saying, "Now I don't have all the details but we're shifting you to a new treatment that you can do outpatient."
By the time I showed up Tad was in a panic wondering what the hell was going on. A new doc arrived with the fellow (clearly feeling like he flubbed) --yet another face we'd never seen before-- and when I expressed exasperation at the whole implementation the first thing she found to say to me was "You mean Dr So and so." Apparently during my rant I called her and her colleagues Mr and Mrs - a strategy I use in order to stay polite when I am really angry.
Now one might think that a successful senior oncologist teaching at one of the best medical schools in the Western Hemisphere would have enough self-assurance to be able to see through a patient's family member's anger and discern that underneath is sheer terror and that possibly beneath that is immeasurable sorrow at the idea of losing the person they love so dearly.
One might think that this doctor would consider reaching out and putting a hand on said family member's shoulder, making eye contact, conjuring up a smile and saying "I'm sorry for the mix up - let's talk about finding solutions here."
One might think that this person with decades of training and experience, who is not ill and who is in fact paid dearly to be there had enough personal solidity to be able to hold the anxiety in the room in some form of compassionate way.
Instead she chose to correct my grammar and remind me of their proper title.
There...I'm done.
This week has been very sweet. Tad stays at my place in San Francisco, drives or takes a taxi to UCSF, gets chemo and blood, then comes home for a gentle evening in, watching movies and such.
In the midst of all this craziness Tad has had some seriously ill moments. One of the decisions he's made is that he prefers to get the autologous transplant here in San Francisco rather than trying to go for the more complicated donor-transplant in Seattle. As a reminder: the autologous consists in receiving one's own stem cells which got harvested during a period of remission. This has been known to create a cancer-free life for folks without the painful sickness known as Graft versus Host Disease, a complex syndrome in which your newly implanted immune system basically screams bloody murder and starts attacking the new house it doesn't recognize as its own.
Another piece of great news is that Tad's insurance company, after some serious medical nudging, have agreed to pay for a drug that has been recently shown to have some really good outcomes for leukemia. Sorafenib, a simple pill has only shown some anecdotal evidence of working well with leukemia patients but these anecdotes are pretty promising - so his docs have decided to give it a try. Upon appeal his drug insurance agreed to go for it as well - a promising outcome. In my opinion - based on what the doctors have told me- the insurers wouldn't pay if the evidence weren't compelling.
Truth be told the word "transplant" hasn't been mentioned a lot lately by medical staff, leading me to wonder whether we are still on a curative path or simply on a more "maintenance" path ie helping him live with leukemia for as long as possible while keeping it weak with nasty-ass drugs. I don't know if this is my fear speaking or if it's based on what I'm picking up. And I'm not sure if his providers know either.
What is clear to me is that we thought this would be more like an 800 meter sprint: get chemo, get in remission, get transplant, get back to life. The truth is it is much more like a VERY long marathon with pit stops for food and water but with long periods of pushing hard and painfully. I am slowly realizing that by getting back to my own life I am not betraying him (I passed my first round of psychology board exams early December and planning for round two early February). We are learning that it's healthy for us to spend time apart each week, to reach out more to friends for practical support, to sit with our fears and not always act on them.
Please know that your cards, phone calls, casseroles, offers to go for walks and hugs are ALWAYS welcome and quite clearly part of what keep us going every day.
Tad and I both went and got haircuts yesterday - his first in over 10 months. Here is a photo we took of ourselves.
As of today life is pretty calm...though that hasn't been the case since my last post early November.
After our great vacation in Arizona and the day before we were scheduled to go to Seattle for a consultation - the doctor conducted a biopsy on Tad's bone marrow that showed cancerous cells, thus rendering him inelegible for the trial transplantation in Seattle. This also meant a lot of running around undoing all the running around I had done to organize this trip (even got Alaska Air to donate his plane ticket!!).
What this really meant was unclear to us. We had been told that if we wait long enough after remission that the cancerous cells would return so this didn't seem to be a big issue (it had been about six weeks). But apparently based on all the nasty chemicals with which they had bombarded his body, this Return of the White-Blood Cell Eaters was too early and not a good sign.
The doctors have put him on two new meds for which his cancer is naive (don't you love this medical jargon?!) and which, joy of joys, are slow-acting and can therefore be done at home pretty much.
So we've stepped off of the really nasty roller coaster of very high hills (a month of hospitalization with no immune system while being vulnerable to any kind of bug spiced up with loss of hair, a pinch of diarrhea and mouth sores) followed by a month of home rest, rinse, repeat to a more gentle roller coaster (mouth sores, night sweats, achy flu-like symptoms mixed in with symptomless periods).
We've gone from an E ride to perhaps a C ride.
This time around the more exhilarating moments have been caused by the hospitals infuriatingly difficult rapport with outpatient treatment for something this complicated. Though they swear up and down that this new protocol which consists of five days of one-hour IV's is "not rocket science" (their words not mine) and is easily done locally in Santa Cruz, their incapacity to coordinate with entities other than themselves is outstanding.
(When I finally got in touch with docs at Seattle to get him up there for the protocol they said to me: "We don't understand - it's taken eight phone calls with UCSF to get nowhere.")
Three days before our first appointment with a Santa Cruz oncologist for some simple blood draws and possible transfusions I called UCSF outpatient clinic just to let them know I was following the plan and wanting to keep them in the loop. An hour later I received a phone call from his nurse's boss insisting I get him up to San Francisco as soon as possible, swearing that he was at death's door and that he needed to be hospitalized immediately - successfully scaring the hell out of me. When I shared this info with Tad he simply said: "I'm staying here for Christmas and will be going to see the local oncologist as planned."
To be honest I guess that was more like an A Ride hill.
While I'm on a rant I feel the need to get a very painful incident off my chest; I've been gnawing at this for weeks.
After the Seattle disappointment Tad returned to UCSF for chemo through a process of calling in each morning to see if there is a bed available and whether today is the day we call in a sitter for the cat, stop everything for a month, tell the neighbors to start watering, throw the bags in the car and go to SF or not. After five days of this they finally found us a bed, we arrived and they put the long plastic tube in his arm that goes over to his heart (a PICC line). Then a "fellow", a sort of visiting doc, came in to announce the new chemo plan. The problem is he started off by saying, "Now I don't have all the details but we're shifting you to a new treatment that you can do outpatient."
By the time I showed up Tad was in a panic wondering what the hell was going on. A new doc arrived with the fellow (clearly feeling like he flubbed) --yet another face we'd never seen before-- and when I expressed exasperation at the whole implementation the first thing she found to say to me was "You mean Dr So and so." Apparently during my rant I called her and her colleagues Mr and Mrs - a strategy I use in order to stay polite when I am really angry.
Now one might think that a successful senior oncologist teaching at one of the best medical schools in the Western Hemisphere would have enough self-assurance to be able to see through a patient's family member's anger and discern that underneath is sheer terror and that possibly beneath that is immeasurable sorrow at the idea of losing the person they love so dearly.
One might think that this doctor would consider reaching out and putting a hand on said family member's shoulder, making eye contact, conjuring up a smile and saying "I'm sorry for the mix up - let's talk about finding solutions here."
One might think that this person with decades of training and experience, who is not ill and who is in fact paid dearly to be there had enough personal solidity to be able to hold the anxiety in the room in some form of compassionate way.
Instead she chose to correct my grammar and remind me of their proper title.
There...I'm done.
This week has been very sweet. Tad stays at my place in San Francisco, drives or takes a taxi to UCSF, gets chemo and blood, then comes home for a gentle evening in, watching movies and such.
In the midst of all this craziness Tad has had some seriously ill moments. One of the decisions he's made is that he prefers to get the autologous transplant here in San Francisco rather than trying to go for the more complicated donor-transplant in Seattle. As a reminder: the autologous consists in receiving one's own stem cells which got harvested during a period of remission. This has been known to create a cancer-free life for folks without the painful sickness known as Graft versus Host Disease, a complex syndrome in which your newly implanted immune system basically screams bloody murder and starts attacking the new house it doesn't recognize as its own.
Another piece of great news is that Tad's insurance company, after some serious medical nudging, have agreed to pay for a drug that has been recently shown to have some really good outcomes for leukemia. Sorafenib, a simple pill has only shown some anecdotal evidence of working well with leukemia patients but these anecdotes are pretty promising - so his docs have decided to give it a try. Upon appeal his drug insurance agreed to go for it as well - a promising outcome. In my opinion - based on what the doctors have told me- the insurers wouldn't pay if the evidence weren't compelling.
Truth be told the word "transplant" hasn't been mentioned a lot lately by medical staff, leading me to wonder whether we are still on a curative path or simply on a more "maintenance" path ie helping him live with leukemia for as long as possible while keeping it weak with nasty-ass drugs. I don't know if this is my fear speaking or if it's based on what I'm picking up. And I'm not sure if his providers know either.
What is clear to me is that we thought this would be more like an 800 meter sprint: get chemo, get in remission, get transplant, get back to life. The truth is it is much more like a VERY long marathon with pit stops for food and water but with long periods of pushing hard and painfully. I am slowly realizing that by getting back to my own life I am not betraying him (I passed my first round of psychology board exams early December and planning for round two early February). We are learning that it's healthy for us to spend time apart each week, to reach out more to friends for practical support, to sit with our fears and not always act on them.
Please know that your cards, phone calls, casseroles, offers to go for walks and hugs are ALWAYS welcome and quite clearly part of what keep us going every day.
Tad and I both went and got haircuts yesterday - his first in over 10 months. Here is a photo we took of ourselves.
Tuesday, November 2, 2010
From Tucson to Seattle
One of the up sides of having ADD is my capacity to scan for and process lots of information. When I drive I tend to have my eye two or three steps ahead of my car. The down side of course is that I can be an impatient driver and riding with me can be pretty annoying. The best way I've found to slow down my mind is to stop and regularly meditate - but that's not easy when I'm buzzing past huge rigs at 75 MPH.
For nine days in mid-October Tad and I drove nearly 2000 miles to visit family and friends, to take in the beauty of the autumnal desert and to simply get away for a much needed vacation in Southern California and Arizona. The hidden goal that gave birth to the trip however was for him to say good-bye to members of his family of origin for perhaps the last time.
If all goes well the next few months will present Tad with a bone-marrow transplant (more realistically called a stem cell transplant) which may or may not rid him of cancer and may also kill him by replacing his immune system with someone else's. It's the most promising procedure for a long-term cure and the most fatal due to the many possible complications; the ultimate eye of the needle.
As we put more and more miles between us and the Bay Area I watched Tad and myself loosen up, laugh more, become curious about things around us. I watched us release the cumulative fears and obsessions we'd been building up around this phase of his treatment. I observed us as we temporarily let fade from our awareness the crazy-making fact that the ONE hospital offering the most promising clinical trial doesn't like Tad's insurance - or to be more specific doesn't like Tad's secondary insurance - the part that covers the 20% his other insurance doesn't cover.
Unlike many of my friends Tad is not without insurance; he actually has three different kinds of coverage! But after telling us they simply needed to speak to the insurer, the folks from the Seattle Cancer Center have now announced that they do not bill that insurer, or rather that they once did but they had bad luck so they'd rather not for the moment - the perfect response to make any level-headed person go bonkers.
In my attempt to make this road trip as relaxing as possible I decided to resist the insistent pull of my mind toward what was happening 300 yards ahead of our car and devised strategies on how I might possibly get around it. I decided to stop wondering why the person driving the light blue Chevrolet with Nevada license plates thinks it's okay to set up residency in the left lane and drive ten miles under the speed limit, keeping gentle pace with an 18 wheeler full of chickens. I know that if I focus on these things long enough my mind gets jittery, I feel some kind of mis-placed rage and I ultimately stop enjoying the beauty of the landscape, the music from the Ipod and the pleasure of driving in the open desert with my beloved.
The strategy I used for myself was taking a deep breath and simply repeating in my mind: "Just this". Not the baby blue chevy, not the 18-wheeler, not the question of whether we will get through LA before the bewitching rush hour deadline of 2:30 PM but...
just this...
just this....
just this.
It reminded me of a time when I was attending a silent retreat in Northern Quebec with American Indians. I actually fasted for ten days, and remained silent for four of those ten days while participating in various native American rituals. One day I took off for a long hike in silence and discovered a gurgling mountain river. I walked along side it and became so fascinated by it that I lost the path home through the thick woods. But I knew that if I just followed the river downstream it would take me back to a road that would take me back to my camp. Standing on one of the giant boulders looking downstream my heart dropped since I could see no possible road map. Much to my chagrin the rocks were not scattered in a terribly organized fashion! Yet I had no choice.
What I discovered was that all I had to do was focus on getting to the next rock and once I got to there, the next one seemed obvious. One rock at a time I made way back home. That rock-jumping experience was one of the big take-aways from my tree-huggers, touchy-feely retreat: take life one stone at a time and don't get too obsessed about the big picture.
Just this.
I don't know what the outcome of our present medico-insurance dilemma will be. I don't know if we'll get into the study in Seattle (we have an appointment on Friday to discuss it) or if we'll remain in San Francisco and get the less promising (but less fatal) autologous transplant in which the doctors will give Tad some of his own previously extracted immune stem cells.
When people or greeting cards tell me to "simply trust" - I admit that my first thought is "trust what?" or rather "Trust WHAT!?!?!?"
I can't really find the way to trust some benevolent god or angels or universal flow.
But what is clear to me is that I CAN trust "just this". I can trust that each day I have what it takes and Tad has what it takes to stay connected and remain hopeful for that day.
Not surprisingly our friends and family weren't really eager to say the ultimate good-bye to Tad, nor were we, truth be told. Instead of being a trip about sorrow it was a simple road trip about life, about saguaro cacti and giant orange boulders, about hummingbirds and mediocre novels, popcorn in front of the TV with family, barbecue ribs and apple orchard forays, chatting with friends and enjoying the journey.
It was a trip about just this.
[EPILOGUE: Since first posting this Tad had a bone marrow biopsy - a lovely procedure in which they bore a hole in his hip bone to take out a sample. It indicated some cancer activity in the blood meaning it's best that he get more chemo before getting a transplant. We called Seattle to see if we should come or stay and they recommended we come up after this next round of chemo. By then they will have had time to find a donor match as well. Deeeeeep breath....]
For nine days in mid-October Tad and I drove nearly 2000 miles to visit family and friends, to take in the beauty of the autumnal desert and to simply get away for a much needed vacation in Southern California and Arizona. The hidden goal that gave birth to the trip however was for him to say good-bye to members of his family of origin for perhaps the last time.
If all goes well the next few months will present Tad with a bone-marrow transplant (more realistically called a stem cell transplant) which may or may not rid him of cancer and may also kill him by replacing his immune system with someone else's. It's the most promising procedure for a long-term cure and the most fatal due to the many possible complications; the ultimate eye of the needle.
As we put more and more miles between us and the Bay Area I watched Tad and myself loosen up, laugh more, become curious about things around us. I watched us release the cumulative fears and obsessions we'd been building up around this phase of his treatment. I observed us as we temporarily let fade from our awareness the crazy-making fact that the ONE hospital offering the most promising clinical trial doesn't like Tad's insurance - or to be more specific doesn't like Tad's secondary insurance - the part that covers the 20% his other insurance doesn't cover.
Unlike many of my friends Tad is not without insurance; he actually has three different kinds of coverage! But after telling us they simply needed to speak to the insurer, the folks from the Seattle Cancer Center have now announced that they do not bill that insurer, or rather that they once did but they had bad luck so they'd rather not for the moment - the perfect response to make any level-headed person go bonkers.
In my attempt to make this road trip as relaxing as possible I decided to resist the insistent pull of my mind toward what was happening 300 yards ahead of our car and devised strategies on how I might possibly get around it. I decided to stop wondering why the person driving the light blue Chevrolet with Nevada license plates thinks it's okay to set up residency in the left lane and drive ten miles under the speed limit, keeping gentle pace with an 18 wheeler full of chickens. I know that if I focus on these things long enough my mind gets jittery, I feel some kind of mis-placed rage and I ultimately stop enjoying the beauty of the landscape, the music from the Ipod and the pleasure of driving in the open desert with my beloved.
The strategy I used for myself was taking a deep breath and simply repeating in my mind: "Just this". Not the baby blue chevy, not the 18-wheeler, not the question of whether we will get through LA before the bewitching rush hour deadline of 2:30 PM but...
just this...
just this....
just this.
It reminded me of a time when I was attending a silent retreat in Northern Quebec with American Indians. I actually fasted for ten days, and remained silent for four of those ten days while participating in various native American rituals. One day I took off for a long hike in silence and discovered a gurgling mountain river. I walked along side it and became so fascinated by it that I lost the path home through the thick woods. But I knew that if I just followed the river downstream it would take me back to a road that would take me back to my camp. Standing on one of the giant boulders looking downstream my heart dropped since I could see no possible road map. Much to my chagrin the rocks were not scattered in a terribly organized fashion! Yet I had no choice.
What I discovered was that all I had to do was focus on getting to the next rock and once I got to there, the next one seemed obvious. One rock at a time I made way back home. That rock-jumping experience was one of the big take-aways from my tree-huggers, touchy-feely retreat: take life one stone at a time and don't get too obsessed about the big picture.
Just this.
I don't know what the outcome of our present medico-insurance dilemma will be. I don't know if we'll get into the study in Seattle (we have an appointment on Friday to discuss it) or if we'll remain in San Francisco and get the less promising (but less fatal) autologous transplant in which the doctors will give Tad some of his own previously extracted immune stem cells.
When people or greeting cards tell me to "simply trust" - I admit that my first thought is "trust what?" or rather "Trust WHAT!?!?!?"
I can't really find the way to trust some benevolent god or angels or universal flow.
But what is clear to me is that I CAN trust "just this". I can trust that each day I have what it takes and Tad has what it takes to stay connected and remain hopeful for that day.
Not surprisingly our friends and family weren't really eager to say the ultimate good-bye to Tad, nor were we, truth be told. Instead of being a trip about sorrow it was a simple road trip about life, about saguaro cacti and giant orange boulders, about hummingbirds and mediocre novels, popcorn in front of the TV with family, barbecue ribs and apple orchard forays, chatting with friends and enjoying the journey.
It was a trip about just this.
[EPILOGUE: Since first posting this Tad had a bone marrow biopsy - a lovely procedure in which they bore a hole in his hip bone to take out a sample. It indicated some cancer activity in the blood meaning it's best that he get more chemo before getting a transplant. We called Seattle to see if we should come or stay and they recommended we come up after this next round of chemo. By then they will have had time to find a donor match as well. Deeeeeep breath....]
Friday, September 3, 2010
last night's dream
(Note: I wrote this blog early into Tad's chemo on Sept 3. His hospital stay is almost over and it was a rough ride. An infection migrated to his kidneys and liver around day 10 rendering him weak, confused, aggressive and -fortunately- mostly amnesic. He is better now. I discovered in that period that when my fear gets the biggest - I stop communicating with the outside world. Good to know for the future...)
Last night I had a lengthy dream about a former lover of mine and myself. We were involved in a complex adventure to get out of a country. Our escape plan included border patrol, trains, walls to climb and buildings to skirt. Our plan was genius and --it was quite clear to me-- would get us around and beyond all these obstacles. But in the end for reasons I couldn't grasp he decided to stay on the train just as we were supposed to hop off. He knew he was sick and that our escape plan would exact too much of a toll on his body. I wept as the train rolled away.
But shortly after hopping off, I suddenly found myself back in my home country in a fancy restaurant trying to explain my sorrow to acquaintances who just didn't understand.
Tad is back in the hospital for round three of chemotherapy - politely called "consolidation".
This is a good thing we're told: round two managed to put him into remission and consolidation will prepare him for the grand slam, a bone marrow transplant. The not so good new is we're also told that given Tad's particular make-up this final and necessary round can only be conducted in Seattle, Washington. For those unlucky souls who have yet to discover the beauty of the Pacific Coast, Seattle is about 15 hours by car from San Francisco.
Thus yesterday we found ourselves calling there to find out about housing, length of stay, prices, to try to understand what is covered by Tad's insurance and more importantly what is not. My mind began wandering as some sweet woman explained to me how certain insurances crossed state lines and others didn't. Within a short time my head was spinning with uncertainty. It's not impossible by any means but it may mean an expensive stay, for at least two months, away from our community, in a city we don't know. It's not clear to me how much I'll be able to stay there while Tad is undergoing all of this and how much I'll need to be in San Francisco.
Tad once told me (wisely) that it's important to look at the past, but just as important not to stare. As we cross this strange leukemia desert together I see that the idiom holds true for the future as well. It's important to look ahead and see the goal in the distance but it's equally important to come back quickly to the present, to our feet in the sand, the breeze on our skin, to one foot in front of the other.
What my dream reminded me of, a notion I like to leave out of my everyday thinking, is the painful idea that we may not get to our destination together. Cancer has already separated us in a way; he has it in his body, I have it in my heart. Occasionally this reality leaves us with a gulf of misunderstanding at times hard to overcome.
Then we have moments like the one we had two nights ago in which I put his hospital bed up high, turned down the lights, pulled the curtain to block out glances from passersby, put on Brian Eno's Airport Music and gave him a delicious massage to try to ease the throbbing headaches he's been experiencing this time around. Afterward we sat holding hands, watching a brilliant Swedish thriller that had me gasping like a school girl. In those moments we remember that we are still side by side in this journey, just living it from different angles.
In the final scene of last night's dream I get up from the table to go the bathroom only to discover that the toilet is in the middle of a vast, bustling, 19th century dining room full of elegant diners, all of whom can see me doing my business.
A lovely metaphor.
Here I sit with those normally-not-seen parts of my life in full view: at times I cry on the subway or while shopping for my weekly groceries. The good news is I no longer hear those old playground voices: "Boys don't cry", "Be strong", "What will people think?" I just sit and do my business.
It's just life folks. Go back to your meals.
Last night I had a lengthy dream about a former lover of mine and myself. We were involved in a complex adventure to get out of a country. Our escape plan included border patrol, trains, walls to climb and buildings to skirt. Our plan was genius and --it was quite clear to me-- would get us around and beyond all these obstacles. But in the end for reasons I couldn't grasp he decided to stay on the train just as we were supposed to hop off. He knew he was sick and that our escape plan would exact too much of a toll on his body. I wept as the train rolled away.
But shortly after hopping off, I suddenly found myself back in my home country in a fancy restaurant trying to explain my sorrow to acquaintances who just didn't understand.
Tad is back in the hospital for round three of chemotherapy - politely called "consolidation".
This is a good thing we're told: round two managed to put him into remission and consolidation will prepare him for the grand slam, a bone marrow transplant. The not so good new is we're also told that given Tad's particular make-up this final and necessary round can only be conducted in Seattle, Washington. For those unlucky souls who have yet to discover the beauty of the Pacific Coast, Seattle is about 15 hours by car from San Francisco.
Thus yesterday we found ourselves calling there to find out about housing, length of stay, prices, to try to understand what is covered by Tad's insurance and more importantly what is not. My mind began wandering as some sweet woman explained to me how certain insurances crossed state lines and others didn't. Within a short time my head was spinning with uncertainty. It's not impossible by any means but it may mean an expensive stay, for at least two months, away from our community, in a city we don't know. It's not clear to me how much I'll be able to stay there while Tad is undergoing all of this and how much I'll need to be in San Francisco.
Tad once told me (wisely) that it's important to look at the past, but just as important not to stare. As we cross this strange leukemia desert together I see that the idiom holds true for the future as well. It's important to look ahead and see the goal in the distance but it's equally important to come back quickly to the present, to our feet in the sand, the breeze on our skin, to one foot in front of the other.
What my dream reminded me of, a notion I like to leave out of my everyday thinking, is the painful idea that we may not get to our destination together. Cancer has already separated us in a way; he has it in his body, I have it in my heart. Occasionally this reality leaves us with a gulf of misunderstanding at times hard to overcome.
Then we have moments like the one we had two nights ago in which I put his hospital bed up high, turned down the lights, pulled the curtain to block out glances from passersby, put on Brian Eno's Airport Music and gave him a delicious massage to try to ease the throbbing headaches he's been experiencing this time around. Afterward we sat holding hands, watching a brilliant Swedish thriller that had me gasping like a school girl. In those moments we remember that we are still side by side in this journey, just living it from different angles.
In the final scene of last night's dream I get up from the table to go the bathroom only to discover that the toilet is in the middle of a vast, bustling, 19th century dining room full of elegant diners, all of whom can see me doing my business.
A lovely metaphor.
Here I sit with those normally-not-seen parts of my life in full view: at times I cry on the subway or while shopping for my weekly groceries. The good news is I no longer hear those old playground voices: "Boys don't cry", "Be strong", "What will people think?" I just sit and do my business.
It's just life folks. Go back to your meals.
Thursday, July 15, 2010
words
My motto lately has been "More silence, fewer words". I've actually stopped my own psychotherapy and begun working with a meditation coach. I see now that this has also impacted my blog.
The last three weeks have been mostly about sitting uncomfortably with Tad's immune system at Zero - the goal of chemo for leukemia. Then waiting for it to rebuild itself.
The first phase lasted a good 12 days, the second took about 3!
During these times of waiting it is very tempting to fill the wait with all kinds of words/thoughts/scenarios. I have found that the very best way for me to go through this is one day at a time allowing myself to only have thoughts and feelings about what is actually in front of me and not my scary fantasies.
Last night, quite unpleasantly, the staff sent us hiking. We no longer qualified for the more specialized-care bed of a chemo patient and were sent to the lower realms of the liver-transplant folks which was so calm it looks like it's about to go out of business. Tad has actually been on the 14th floor of a unit which has its HQ on the 11th floor but because they don't have enough beds they borrow 10 rooms from the 11th floor.
The highlight of the 30 days in hospital was a few hours of birthday party in the "Solarium" (think big corner office with lots of windows and ugly furniture) which we managed to turn into something almost warm and welcoming. Tad got special permission to get off the ward as long as he wore a face mask between the two worlds. Sweet friends came with cards, gifts and hugs.
The other highlight was actually a darker moment. Around day 10 we discovered that contrary to what we had been told, this was not round 2 of 3 but instead round 2 of 4. It seems that the misunderstanding stems from the previous doctor's declaration of remission being a bit premature. Apparently further data came back indicating that Tad's cancer wasn't entirely in remission. Thus this last round of chemo wass intended to eradicate it as much as possible - the absolute prerequisite before doing the "transplant" that will hopefully keep him cancer-free.
This "transplant" consists in giving Tad an immune stimulant in order to build up his immune system into a mega-immune system. At that point they will put him on a sort of dialysis machine and extract his life-giving stem cells from his blood. These will be frozen then re-injected into his body after Round 4 of chemo. They are the seedlings that are meant to keep him cancer free.
In essence the procedure has two basic principles: 1 - eradicate all immune system good and bad several times and let the good rebuild itself hopefully without the bad and 2 - give the good cells an extra boost by fertilizing them with your own previously produced good stuff.
We will know in about 2 weeks if Tad has achieved remission - this will be based on the results of a bone marrow biopsy to be conducted in 10-14 days. If he doesn't hit remission the doctors will elaborate a second strategy.
In the meantime we return to the slow sweet life of Santa Cruz: kitty, gardens, neighbors, friends, walks along the ocean, breakfasts in Seabright.
This stay will also include the highly-anticipated visit of my 13 year old godson and his parents from Bordeaux. He's looking forward to hanging out with Tad and me (and riding the rides at the Boardwalk!)
The last three weeks have been mostly about sitting uncomfortably with Tad's immune system at Zero - the goal of chemo for leukemia. Then waiting for it to rebuild itself.
The first phase lasted a good 12 days, the second took about 3!
During these times of waiting it is very tempting to fill the wait with all kinds of words/thoughts/scenarios. I have found that the very best way for me to go through this is one day at a time allowing myself to only have thoughts and feelings about what is actually in front of me and not my scary fantasies.
Last night, quite unpleasantly, the staff sent us hiking. We no longer qualified for the more specialized-care bed of a chemo patient and were sent to the lower realms of the liver-transplant folks which was so calm it looks like it's about to go out of business. Tad has actually been on the 14th floor of a unit which has its HQ on the 11th floor but because they don't have enough beds they borrow 10 rooms from the 11th floor.
The highlight of the 30 days in hospital was a few hours of birthday party in the "Solarium" (think big corner office with lots of windows and ugly furniture) which we managed to turn into something almost warm and welcoming. Tad got special permission to get off the ward as long as he wore a face mask between the two worlds. Sweet friends came with cards, gifts and hugs.
The other highlight was actually a darker moment. Around day 10 we discovered that contrary to what we had been told, this was not round 2 of 3 but instead round 2 of 4. It seems that the misunderstanding stems from the previous doctor's declaration of remission being a bit premature. Apparently further data came back indicating that Tad's cancer wasn't entirely in remission. Thus this last round of chemo wass intended to eradicate it as much as possible - the absolute prerequisite before doing the "transplant" that will hopefully keep him cancer-free.
This "transplant" consists in giving Tad an immune stimulant in order to build up his immune system into a mega-immune system. At that point they will put him on a sort of dialysis machine and extract his life-giving stem cells from his blood. These will be frozen then re-injected into his body after Round 4 of chemo. They are the seedlings that are meant to keep him cancer free.
In essence the procedure has two basic principles: 1 - eradicate all immune system good and bad several times and let the good rebuild itself hopefully without the bad and 2 - give the good cells an extra boost by fertilizing them with your own previously produced good stuff.
We will know in about 2 weeks if Tad has achieved remission - this will be based on the results of a bone marrow biopsy to be conducted in 10-14 days. If he doesn't hit remission the doctors will elaborate a second strategy.
In the meantime we return to the slow sweet life of Santa Cruz: kitty, gardens, neighbors, friends, walks along the ocean, breakfasts in Seabright.
This stay will also include the highly-anticipated visit of my 13 year old godson and his parents from Bordeaux. He's looking forward to hanging out with Tad and me (and riding the rides at the Boardwalk!)
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