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."
Thursday, January 27, 2011
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.
Subscribe to:
Posts (Atom)