Sunday, May 25, 2008
Feeling Better
Spent Wednesday night through Saturday after breakfast at my zen center in Champaign, which calmed my mind considerably. I think also the Effexor (antidepressant) is beginning to kick in. Anxiety still licks around the corners, but I have Lorazepam for that, so I am actually looking forward to my trip to Mexico. I'll be leaving early Tuesday morning, returning the following Tuesday evening, June 3. A couple of friends have told me that I am beginning to seem like my old self, and I will say that I am starting to feel better, although I do believe my old self will never be the same. The therapist I saw last week observed that I am moving from acute illness into the chronic illness phase (although my zen teacher warns against believing the label "chronic illness.") The fact remains that I am going to have to live with the idea that the illness can reappear at any time, and with the practice of getting CT scans every three months to see what's happening and determine if anything has changed. This will take time, I realize. I am also going to have to go back to work soon, as I'm living on savings. I'm already doing a little work, but I'm not up to full capacity. Finally, I have to get stronger. I haven't been to a gym in months, although I have been walking and going to yoga, but not regularly. Your ongoing expressions of support, concern, love and compassion, in all their various forms, are of great support and comfort. Many thanks.
Tuesday, May 20, 2008
Still Struggling
Don't worry, I haven't done myself in, but I'm still struggling with anxiety and depression. Am on Lorazepam for anxiety, which helps, and Effexor for an antidepressant, which hasn't yet kicked in full force. I've had two sessions with a Ph.D. psychotherapist, who tells me he doesn't think I need a psychiatrist, that he and my primary care doctor should be able to manage me medically. I am trying to keep busy and active, and will be heading down to Champaign tomorrow for a few days of a zen intensive retreat, returning Saturday after breakfast. I will be leaving Tuesday, May 27, for Mexico, returning June 3, so don't worry if I don't blog again before June. Thanks to everyone for your expressions of love and concern. They mean a lot to me.
Sunday, May 4, 2008
Breather
Since my last blog I've been on an emotional roller coaster, dealing with very intense experiences of depression and, more recently, anxiety, and trying to find professional resources to help me with these. My insurance plan has virtually no coverage for mental health: 12 sessions per year at $30/session, as long as it's with an M.D. in a hospital setting. I located a talk therapist with the Chicago Center for Family Health, a man who specializes in chronic illness and has had a lot of experience with cancer patients. I can see him for $60/session, which seems steep, since I'm living on savings, but in reality is quite reasonable these days. The earliest I can see him is May 15, which, when I'm in the tunnel, seems like an eternity, but today, when I'm not in the tunnel, seems do-able.
I have an appointment with my primary care doctor Tuesday to talk about medication for this biochemical nightmare. Working with my internist is a stopgap measure until I can locate a psycho-pharmacologist with an institution that charges on a sliding scale fee basis, but I really think there is as large biochemical component to what I have been experiencing. I can feel the anxiety and depression coming on in my innards; it's gut wrenching and agonizing.
My oncologist's physician assistant tells me it's very normal for people to sink into depression following treatment. All my resources were marshalled to get through treatment, and it was a very active time: radiation 5 days a week for six weeks, chemotherapy every three weeks, and then just trying to get through the aftermath of chemotherapy. But now there's nothing to do but watch and wait, and plenty of time for the demons to arise. Two cancer survivor friends of mine have pointed out to me that cancer changes one; Thursday morning I awoke in a cold sweat, face to face with fear of death. It's quite debilitating: every cell in your body contracts, your bowels twist, your heart pounds, and the aftermath stays with you for hours. There's a heaviness, lack of interest in anything that usually engages you, slight nausea.
I have been trying to be very gentle with myself, and to make sure that I'm getting some exercise every day, and to eat right and spend lots of time with friends and loved ones. Structuring my time seems to be key. So, friends and loved ones, call me, and let's put something on the calendar.
I have an appointment with my primary care doctor Tuesday to talk about medication for this biochemical nightmare. Working with my internist is a stopgap measure until I can locate a psycho-pharmacologist with an institution that charges on a sliding scale fee basis, but I really think there is as large biochemical component to what I have been experiencing. I can feel the anxiety and depression coming on in my innards; it's gut wrenching and agonizing.
My oncologist's physician assistant tells me it's very normal for people to sink into depression following treatment. All my resources were marshalled to get through treatment, and it was a very active time: radiation 5 days a week for six weeks, chemotherapy every three weeks, and then just trying to get through the aftermath of chemotherapy. But now there's nothing to do but watch and wait, and plenty of time for the demons to arise. Two cancer survivor friends of mine have pointed out to me that cancer changes one; Thursday morning I awoke in a cold sweat, face to face with fear of death. It's quite debilitating: every cell in your body contracts, your bowels twist, your heart pounds, and the aftermath stays with you for hours. There's a heaviness, lack of interest in anything that usually engages you, slight nausea.
I have been trying to be very gentle with myself, and to make sure that I'm getting some exercise every day, and to eat right and spend lots of time with friends and loved ones. Structuring my time seems to be key. So, friends and loved ones, call me, and let's put something on the calendar.
Tuesday, April 22, 2008
Shrinkage
The CT scan showed that all that remains of the tumors are a couple of tiny blips. These are most likely scar tissue, but they might be cancer cells. This is the best possible outcome anyone could have hoped for: "excellent," in the words of my plain-spoken radiation oncologist. The official report won't be ready until tomorrow, but I saw the photos.
I am teary eyed as I type this. I think I am structured for delayed reaction - at the time I saw the pix I was pretty numb, in fact all day until just a few minutes ago I've been pretty numb. In fact I've been pretty numb, or else teary, for weeks now. For this reason I have been referred to a psychologist. Apparently it is quite normal for patients to be depressed at this stage of the game, the "Now what" phase. The active fight against the cancer is over; now and for the next two years I will get a scan every three months and watch to see if there's any change. They say most people need help with this transition, so I am going to go ahead and see if any of these psychologists is in my insurance plan, and then take it from there.
In short, the word for today is "shrinkage."
I am teary eyed as I type this. I think I am structured for delayed reaction - at the time I saw the pix I was pretty numb, in fact all day until just a few minutes ago I've been pretty numb. In fact I've been pretty numb, or else teary, for weeks now. For this reason I have been referred to a psychologist. Apparently it is quite normal for patients to be depressed at this stage of the game, the "Now what" phase. The active fight against the cancer is over; now and for the next two years I will get a scan every three months and watch to see if there's any change. They say most people need help with this transition, so I am going to go ahead and see if any of these psychologists is in my insurance plan, and then take it from there.
In short, the word for today is "shrinkage."
Monday, April 21, 2008
Monday Morning
Roughly 24 hours from now I'll be discussing results of my CT scan with my oncologist. Am trying to fend off anxiety about this. After all, I'll be getting CT scans every three months for the next two years, according to the protocol for the clinical trial in which I am participating. Am going to pull out my meditation cushion and sit myself down for half an hour, but just thought I'd check in with you beforehand. I'm feeling a little stronger each day, though still fighting a running battle with the blues. I guess that's natural, but it feels really strange. Will write again tomorrow, when there's something more concrete to report. Love to all.
Wednesday, April 16, 2008
Through the Cracks
My oncology nurse told me someone would call me to follow up after my last chemotherapy (April 1). It seemed odd to me that no one had scheduled a CT scan or any follow up by now, so I phoned the USS Northwestern to talk to my oncologist's physician assistant. She informed me that the protocol for the clinical trial I am in calls for a CT scan three weeks after my last chemo, which means next Tuesday, April 22. She seemed surprised that this had not been scheduled.
Just received a call from the "patient care" person who will be scheduling these appointments for me. Tune in next week for results of scan, which I guess will determine what, if anything, happens next. My understanding is that they expect to see shrinkage in the tumors, along with residual scar tissue, and that we will practice "watchful waiting" to see if there's any growth in the scar tissue, which would indicate that it is cancerous. Seems to me at some point I should get an MRI and PET scan, too, but they didn't mention anything about that, so I will ask next Tuesday. The cancer I have likes to metastasize, and two favorite sites are the brain and the bones. The MRI and PET scan, I believe, looks for cancer in those places. The protocol calls for follow up blood tests and CTs of the chest every three months for two years.
I am slowly beginning to feel better, that is, I guess, to recover from the side effects of chemotherapy. I sure hope I won't need any more of that stuff. It is not fun.
Just received a call from the "patient care" person who will be scheduling these appointments for me. Tune in next week for results of scan, which I guess will determine what, if anything, happens next. My understanding is that they expect to see shrinkage in the tumors, along with residual scar tissue, and that we will practice "watchful waiting" to see if there's any growth in the scar tissue, which would indicate that it is cancerous. Seems to me at some point I should get an MRI and PET scan, too, but they didn't mention anything about that, so I will ask next Tuesday. The cancer I have likes to metastasize, and two favorite sites are the brain and the bones. The MRI and PET scan, I believe, looks for cancer in those places. The protocol calls for follow up blood tests and CTs of the chest every three months for two years.
I am slowly beginning to feel better, that is, I guess, to recover from the side effects of chemotherapy. I sure hope I won't need any more of that stuff. It is not fun.
Monday, April 14, 2008
Feeling Better
Day 13 after my last chemo and I woke up feeling somewhat better. Will be heading to the acupuncturist shortly but just wanted to thank all those who checked in with me over the weekend and helped to keep my spirits up. I'm hoping in another week to be more fully back in the game. Meanwhile I just have to persevere through this period of feeling constantly jet-lagged. The good news is that I seem to get a few hours' respite in the mornings, and the jet-lagged or hungover feeling doesn't kick in til around 11 or so. In short, I'm heading into the new week in somewhat better spirits. Love to all.
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