I didn't let the eye ruin what remained of our evening with New York friends Peter and Lisa who drove here yesterday. Peter and I had an improv session on drums and piano. Curtiss recorded it and a lot of it was cool. Then we had barbecue for dinner and they went back to their hotel. Curtiss was very tired and said he was too tired to be scared.
(Which indicates to me that he WAS scared)I did Reiki on his heels and he fell asleep.
Jim is on the phone, so I'm going now...
Saturday, January 31, 2009
The eye problem
Today I woke up with iritis (also known as anterior uveitis) a chronic problem I've had for 8 years in my left eye. It has been kept at bay for about 8 months now by a study drug made by Novartis. I'm a test subject. The drug seemed to be working because I have never gone this long without a flareup. The stress I've been under lately is a likely culprit--my doctor agrees. There was only one month left of the study to go.
My doctor met me at the clinic today along with one of his fellows and the study coordinator. They examined me, and he determined that I was a perfect candidate for another study which would knock out my uveitis in one blow. This is an electrode-driven dose of steroid directly into the eye using an eyecup-like device which one doc holds against my eyeball (don't worry, it was numbed first) The other doc controls the electric current. There is an electrode patch on my brow which stings as the current is administered. My eyeball stings from the medicine (or possibly both medicine and current) and it is not pleasant holding my eye open for 4 minutes. I say to myself over and over, It's not cancer, it's not cancer, I can take anything for 4 minutes, it will be over soon, it'll be worth it because I won't have to put a drop in my eye every hour for a week and then taper off for 5 more weeks. I thought about what my boyfriend has to endure and told myself to suck it up. When it was over, the stinging gradually went away, as did most of the eye pain. I had to stay at the clinic for another 3 hours because my blood had to be drawn at regular intervals. We ran into problems with the veins in my arms and had to use the tiny veins on the tops of my hands. I kept wondering how they draw babies' blood fro the teeny tiny veins. They managed to get enough for plasma. The study protocols state that I must return tomorrow for followup.
My doctor met me at the clinic today along with one of his fellows and the study coordinator. They examined me, and he determined that I was a perfect candidate for another study which would knock out my uveitis in one blow. This is an electrode-driven dose of steroid directly into the eye using an eyecup-like device which one doc holds against my eyeball (don't worry, it was numbed first) The other doc controls the electric current. There is an electrode patch on my brow which stings as the current is administered. My eyeball stings from the medicine (or possibly both medicine and current) and it is not pleasant holding my eye open for 4 minutes. I say to myself over and over, It's not cancer, it's not cancer, I can take anything for 4 minutes, it will be over soon, it'll be worth it because I won't have to put a drop in my eye every hour for a week and then taper off for 5 more weeks. I thought about what my boyfriend has to endure and told myself to suck it up. When it was over, the stinging gradually went away, as did most of the eye pain. I had to stay at the clinic for another 3 hours because my blood had to be drawn at regular intervals. We ran into problems with the veins in my arms and had to use the tiny veins on the tops of my hands. I kept wondering how they draw babies' blood fro the teeny tiny veins. They managed to get enough for plasma. The study protocols state that I must return tomorrow for followup.
Wednesday, January 28, 2009
Still waiting
Three weeks after diagnosis, and we're still waiting to find out if the cancer has spread.
We saw the oncologist, Dr. Enzinger, last Friday. A personable, humane sort of doctor, also a big specialist in gastric cancer. He answered all of our questions. Next: an MRI last Sun. morning, the results of which were "inconclusive." Today, Curtiss saw 2 doctors, a surgeon and a radiation oncologist. More tests have been ordered, a PET scan and an ultrasound. One is this Friday--don't know which. We still don't know if it is stage 4 and there will be no surgery, only chemo and radiation to keep it at bay because there is no cure. Or we will get the relatively cheery news that a cure is possible, but only if his entire stomach is removed and he then gets chemo and radiation for 6 months. I naively expected to get this news today. But cancer diagnosis is sneaky, tricky, and impossibly complicated, as it turns out. And it flows at its own glacial pace. Fortunately, Curtiss is OK with this--he says he isn't ready for more information to process at this point. So I must try to be OK with it, though I am not. I am angry that the process doesn't tell us anything and that the PET scan is no more reliable than the MRI in getting the pictures we need (according to the radiation oncologist, with whom Curtiss had a pleasant chat.) These tests are costing a fortune and so far telling us nothing!!!
And we have to wait, and wait, and wait, to find out if Curtiss can be cured or not.
What good is modern medicine if it can't give us clear and timely answers?
My aunt Joan (whose daughter, my cousin Reesa, is a Hodgkins Disease survivor for about 20 years and is considered cured) asked me to promise her to be as upbeat around Curtiss as possible. It's what is expected of caregivers, apparently. Well, I can try, but I might not succeed. I've been taking my rage to my therapist, but I have very little money and can't afford to see her every week. My aunt is relentlessly upbeat and determined (which may well be the reason for her surviving a heart attack which the doctors expected would kill her) It works for her, but it might not work for me. Sure, I get it that C. is the one with cancer and the outlook is infinitely worse for him than for me--it isn't about me. But I am caught in the cancer crossfire, as C.'s partner, as someone who loves him. Am I supposed to be a rock and never crack?
My mother chastised my dad for being sad around her when she was sick. "Don't do that again," she said. Of course, it was Dad and not me, and Dad can be impossibly and impenetrably glum and totally inconsolable. I'm not like that. On the other hand, it is a terrible strain for me to pretend to be cheerful when I am having a bad fifteen minutes, or five minutes. I am able to distract myself. I am even able to be guardedly hopeful. But consistently upbeat is beyond me. I don't think I should be chastised for getting upset. And Curtiss isn't doing that. I think he gets it about me. I want to help him, but I am a lousy caregiver. The best I can do is take care of my own health so at least I am able to give him the support he needs.
We saw the oncologist, Dr. Enzinger, last Friday. A personable, humane sort of doctor, also a big specialist in gastric cancer. He answered all of our questions. Next: an MRI last Sun. morning, the results of which were "inconclusive." Today, Curtiss saw 2 doctors, a surgeon and a radiation oncologist. More tests have been ordered, a PET scan and an ultrasound. One is this Friday--don't know which. We still don't know if it is stage 4 and there will be no surgery, only chemo and radiation to keep it at bay because there is no cure. Or we will get the relatively cheery news that a cure is possible, but only if his entire stomach is removed and he then gets chemo and radiation for 6 months. I naively expected to get this news today. But cancer diagnosis is sneaky, tricky, and impossibly complicated, as it turns out. And it flows at its own glacial pace. Fortunately, Curtiss is OK with this--he says he isn't ready for more information to process at this point. So I must try to be OK with it, though I am not. I am angry that the process doesn't tell us anything and that the PET scan is no more reliable than the MRI in getting the pictures we need (according to the radiation oncologist, with whom Curtiss had a pleasant chat.) These tests are costing a fortune and so far telling us nothing!!!
And we have to wait, and wait, and wait, to find out if Curtiss can be cured or not.
What good is modern medicine if it can't give us clear and timely answers?
My aunt Joan (whose daughter, my cousin Reesa, is a Hodgkins Disease survivor for about 20 years and is considered cured) asked me to promise her to be as upbeat around Curtiss as possible. It's what is expected of caregivers, apparently. Well, I can try, but I might not succeed. I've been taking my rage to my therapist, but I have very little money and can't afford to see her every week. My aunt is relentlessly upbeat and determined (which may well be the reason for her surviving a heart attack which the doctors expected would kill her) It works for her, but it might not work for me. Sure, I get it that C. is the one with cancer and the outlook is infinitely worse for him than for me--it isn't about me. But I am caught in the cancer crossfire, as C.'s partner, as someone who loves him. Am I supposed to be a rock and never crack?
My mother chastised my dad for being sad around her when she was sick. "Don't do that again," she said. Of course, it was Dad and not me, and Dad can be impossibly and impenetrably glum and totally inconsolable. I'm not like that. On the other hand, it is a terrible strain for me to pretend to be cheerful when I am having a bad fifteen minutes, or five minutes. I am able to distract myself. I am even able to be guardedly hopeful. But consistently upbeat is beyond me. I don't think I should be chastised for getting upset. And Curtiss isn't doing that. I think he gets it about me. I want to help him, but I am a lousy caregiver. The best I can do is take care of my own health so at least I am able to give him the support he needs.
Wednesday, January 14, 2009
Waiting
Curtiss and I are waiting until we see the oncologist on Jan. 23.
It may not be an unreasonable amount of time to wait (I have heard that stomach cancer is slow growing) but I can't bear it. I want him in surgery NOW.
I have called my oncologist so that she will call me back and reassure me that it is OK to wait until the 23rd. The info online about staging is confusing and I'm afraid we are making incorrect assumptions.
I feel a high degree of alienation since there appears to be no one from whom I can get info right now. The doctor at Dana Farber does not give out his direct line # to patients until he has seen them. I guess that makes sense. You can't really get a second opinion until you get a first opinion, and it looks like we will just have to wait until Jan. 23. It's almost as hard for me right now as it must be for Curtiss.
I want answers and I want action. I am not good with sitting still and hoping. The best I can do right now is to send positive energy healing to Curtiss and direct it at the tumor.
I wish I had someone to talk to with information of comfort.
It may not be an unreasonable amount of time to wait (I have heard that stomach cancer is slow growing) but I can't bear it. I want him in surgery NOW.
I have called my oncologist so that she will call me back and reassure me that it is OK to wait until the 23rd. The info online about staging is confusing and I'm afraid we are making incorrect assumptions.
I feel a high degree of alienation since there appears to be no one from whom I can get info right now. The doctor at Dana Farber does not give out his direct line # to patients until he has seen them. I guess that makes sense. You can't really get a second opinion until you get a first opinion, and it looks like we will just have to wait until Jan. 23. It's almost as hard for me right now as it must be for Curtiss.
I want answers and I want action. I am not good with sitting still and hoping. The best I can do right now is to send positive energy healing to Curtiss and direct it at the tumor.
I wish I had someone to talk to with information of comfort.
Thursday, January 8, 2009
My boyfriend has cancer
We found out this week that Curtiss has stomach cancer.
We don't know what stage. We know that it is a malignant adenocarcinoma (95% of all stomach cancers are) We don't know how long it has been growing or if it has spread to other organs or lymph nodes. He had a CAT scan yesterday and the doc hasn't read it yet. He has read the pathology report and prescribed pain meds for C. and promised to get an app't with a top gastric surgeon and presumably an oncologist. It has been 4 years since my struggle with breast cancer, which fortunately was discovered at an early and curable stage. Very little early stage stomach cancer is found because it doesn't have symptoms until later. The picture for my lover, companion of past 8 years is grim. But not hopeless. I find it hard to believe that his cancer could have metastacized because he has not lost his appetite, has not lost weight, and has no blood in his stool. He does have pain where the tumor is. We thought it was only an ulcer. Did not expect this diagnosis. It is rare in men his age (45) We only hope and pray that his youth and strength will help him fight this. We haven't told family yet (except my son, who is home from college and has been very supportive.) I need help to cope with this. I am crying a lot but try not to let him see. I have to be brave to help him get well.
We don't know what stage. We know that it is a malignant adenocarcinoma (95% of all stomach cancers are) We don't know how long it has been growing or if it has spread to other organs or lymph nodes. He had a CAT scan yesterday and the doc hasn't read it yet. He has read the pathology report and prescribed pain meds for C. and promised to get an app't with a top gastric surgeon and presumably an oncologist. It has been 4 years since my struggle with breast cancer, which fortunately was discovered at an early and curable stage. Very little early stage stomach cancer is found because it doesn't have symptoms until later. The picture for my lover, companion of past 8 years is grim. But not hopeless. I find it hard to believe that his cancer could have metastacized because he has not lost his appetite, has not lost weight, and has no blood in his stool. He does have pain where the tumor is. We thought it was only an ulcer. Did not expect this diagnosis. It is rare in men his age (45) We only hope and pray that his youth and strength will help him fight this. We haven't told family yet (except my son, who is home from college and has been very supportive.) I need help to cope with this. I am crying a lot but try not to let him see. I have to be brave to help him get well.
Subscribe to:
Posts (Atom)
