Update from Giudi
Those of us who had been with Valjean on Thursday were overjoyed to see her on Friday. The meds seem to have kicked in with gusto, and she's breathing much more easily, using a lighter oxygen mask some of the time, and speaking up in no uncertain terms to the docs and system that allowed her to get to the point she was at when she was admitted. She's hungry, but not yet allowed to eat anything more substantial than jello.
In the afternoon she underwent a procedure to insert a small tube to drain the fluid that's around her lungs, though that's a relatively minor part of the acute problem.
She had several visitors Friday, and it visibly lifted her spirits. So, close friends, if you have a few minutes to drop by in the next few days, Valjean says you are welcome: Northwestern Memorial, Feinberg Bldg, Room 907. This is the medical ICU. Visits should be short and quiet, no flowers. In particular, try not to let Valjean talk much (yeah, right...); she needs to conserve all her energy for breathing. The phone in her room is turned off, but you can call the main hospital number, 312.926.2000, if you want to make sure she's still in that room.
Saturday, June 21, 2008
Friday, June 20, 2008
Back to the USS Northwestern
This is Giudi, with a report based on notes from Kate Green.
Valjean was admitted to Northwestern Memorial again on June 18, with severe breathing difficulty. The next morning they transferred her to the ICU and put her on a BiPAP machine, which pumps oxygen through a tightly fitting face mask, similar to the C-PAP that’s used for sleep apnea. With that support, she was able to undergo a CT scan.
That scan, upon which we pinned so many diagnostic hopes, was inconclusive. It did show that there was not much fluid in the pleura (hence nothing to drain to make her more comfortable). But there is a large "white-out" area in the right lung, which could be due to 1) bacterial pneumonia, 2) radiation-induced pneumonia, 3) an "aggressive clone" of cancer cells (the oncologist thinks this is unlikely), or 4) a combination of the above. In any case, she has only a small portion of lung working. She’s receiving antibiotics to treat #1, steroids for #2. Bronchoscopy (to retrieve samples of fluid and tissue) might clarify the diagnosis, but she couldn’t cannot tolerate such an invasive procedure without more breathing support: intubation and a ventilator.
After frank discussions with docs and friends, Valjean has agreed to intubation, if her breathing worsens, in order to give the meds a chance to work and, we hope, resolve the acute situation. If the treatment is successful in turning around whatever is going on in her lungs and she becomes able to breathe on her own, the ventilator will be removed; if not, we will honor Valjean's wishes for removal of the tube. The docs have been respectful, informative, compassionate. Friends with medical power-of-attorney are standing by.
Sounds pretty grim....but Valjean is still Valjean. When the pulmonologist arrived and asked how she was, she replied (muffled by the 02 mask), "not my perky best." After the consult with the oncologist and pulmonologist re: the CT scan, "Don't they know what the white stuff is? What are we paying these people for?"
When we left tonight (6/19) they had raised the pressure on the BiPAP and Valjean was breathing a bit easier. She was alert, hungry (only sips of water or juice are allowed), apparently stable, and watching Law and Order.
Valjean sends her love.
Valjean was admitted to Northwestern Memorial again on June 18, with severe breathing difficulty. The next morning they transferred her to the ICU and put her on a BiPAP machine, which pumps oxygen through a tightly fitting face mask, similar to the C-PAP that’s used for sleep apnea. With that support, she was able to undergo a CT scan.
That scan, upon which we pinned so many diagnostic hopes, was inconclusive. It did show that there was not much fluid in the pleura (hence nothing to drain to make her more comfortable). But there is a large "white-out" area in the right lung, which could be due to 1) bacterial pneumonia, 2) radiation-induced pneumonia, 3) an "aggressive clone" of cancer cells (the oncologist thinks this is unlikely), or 4) a combination of the above. In any case, she has only a small portion of lung working. She’s receiving antibiotics to treat #1, steroids for #2. Bronchoscopy (to retrieve samples of fluid and tissue) might clarify the diagnosis, but she couldn’t cannot tolerate such an invasive procedure without more breathing support: intubation and a ventilator.
After frank discussions with docs and friends, Valjean has agreed to intubation, if her breathing worsens, in order to give the meds a chance to work and, we hope, resolve the acute situation. If the treatment is successful in turning around whatever is going on in her lungs and she becomes able to breathe on her own, the ventilator will be removed; if not, we will honor Valjean's wishes for removal of the tube. The docs have been respectful, informative, compassionate. Friends with medical power-of-attorney are standing by.
Sounds pretty grim....but Valjean is still Valjean. When the pulmonologist arrived and asked how she was, she replied (muffled by the 02 mask), "not my perky best." After the consult with the oncologist and pulmonologist re: the CT scan, "Don't they know what the white stuff is? What are we paying these people for?"
When we left tonight (6/19) they had raised the pressure on the BiPAP and Valjean was breathing a bit easier. She was alert, hungry (only sips of water or juice are allowed), apparently stable, and watching Law and Order.
Valjean sends her love.
Wednesday, June 11, 2008
Back from Mexico
Little did I dream when I left for Mexico May 23 that I would end up spending as much time in the hospital upon my return as I did south of the border. I left on a Tuesday and felt fine (although it was at the crack of dawn), but by Saturday was becoming short of breath with any type of exertion. I attributed it to the heat and humidity, and possibly to the pollution in Puerto Vallarta, but it got worse every day, and by Tuesday, June 3, when we were to fly home, just rolling my carryon from my bedroom to the front ot the apartment made me feel completely winded. I needed wheelchairs to get through the airports in Puerto Vallarta, Mexico City, and O'Hare.
My downstairs neighbor helped me with my luggage, and I barely made it up the two flights of stairs to my apartment. I phoned the pulmonology night line at Northwestern Mem. Hospital, and someone phoned me back 15 minutes later telling me to come directly to the ER. So at 10 p.m., having eaten nothing but airport and airplane food all day, I grabbed a 6-inch subway on the way down to the ER, driven by my intrepid and very helpful neighbor. It was a strange night in Chicago, spooky and extremely foggy, but we eventually found the ER entrance and by 2 a.m. or so I was being wheeled up to a fantastic corner room on the 15th floor of the new Prentice Women's Hospital. Floors 14-16 are dedicated to oncology patients. I had a very bad night the rest of the night, and the following morning they drained a liter of fluid from my lungs. Considerably more fluid remained, but it can't be drained too quickly or the lung does something bad, I forget what. I think maybe Thursday they did a procedure called something like pleurecentesis, which was to stick three catheters into the space between the lungs and the chest wall and drain the fluid. When they tested the fluid, they found metastatic cancer cells. They theorize that last winter, when I was diagnosed, there was a sprinkling of malignant cells in the pleura, like a sugar coating, that didn't show up on the images. Those cells grew and started emitting fluid, and the rest is history. Ultimately they drained 4 liters from my pleura, and then did a procedure that essentially glues the lung back into place in the chest wall so that fluid won't be able to build up there in the future. I came home this afternoon to a huge pile of snail mail, hundreds of emails, and a house with no food. My friends have been wonderful, however, and someone's bringing dinner over tonight--the lovely Nancy Gardner, who's a great cook.
The plan is to recover from these procedures, gain back some strength, and get a CT scan in a couple of weeks to see whats happening inside my lungs. A secondary issue is tissue damage caused by radiation treatment, which was depositing some fluid inside the lungs, not beyond them in the pleura. The treatment for radiation pneumonitis is massive doses of steroids, so they're going to put that off for a while and hope that now that the fluid has been drained the inflammation will calm down.
Now I really feel like a lung cancer patient, I'll tell you. They sent me home with a couple of oxygen tanks, and a home care company will bring a home oxygen machine over tonight between 6-9. I was supposed to have been discharged last night, but the doc who examined me just before I was to leave was concerned about swelling in my legs and ordered another test that couldn't be performed until this morning. The Doppler study showed there is, in fact, a blood clot in my right calf, so i will have to give myself shots of blood thinnner twice a day.
Fortunately, my antidepressants starting kicking in whhile I was in Mexico, so my mental health is reasonably good, considering wht's going on. That's it for now. I'll write again tomorrow with details of Mexico trip. xox
My downstairs neighbor helped me with my luggage, and I barely made it up the two flights of stairs to my apartment. I phoned the pulmonology night line at Northwestern Mem. Hospital, and someone phoned me back 15 minutes later telling me to come directly to the ER. So at 10 p.m., having eaten nothing but airport and airplane food all day, I grabbed a 6-inch subway on the way down to the ER, driven by my intrepid and very helpful neighbor. It was a strange night in Chicago, spooky and extremely foggy, but we eventually found the ER entrance and by 2 a.m. or so I was being wheeled up to a fantastic corner room on the 15th floor of the new Prentice Women's Hospital. Floors 14-16 are dedicated to oncology patients. I had a very bad night the rest of the night, and the following morning they drained a liter of fluid from my lungs. Considerably more fluid remained, but it can't be drained too quickly or the lung does something bad, I forget what. I think maybe Thursday they did a procedure called something like pleurecentesis, which was to stick three catheters into the space between the lungs and the chest wall and drain the fluid. When they tested the fluid, they found metastatic cancer cells. They theorize that last winter, when I was diagnosed, there was a sprinkling of malignant cells in the pleura, like a sugar coating, that didn't show up on the images. Those cells grew and started emitting fluid, and the rest is history. Ultimately they drained 4 liters from my pleura, and then did a procedure that essentially glues the lung back into place in the chest wall so that fluid won't be able to build up there in the future. I came home this afternoon to a huge pile of snail mail, hundreds of emails, and a house with no food. My friends have been wonderful, however, and someone's bringing dinner over tonight--the lovely Nancy Gardner, who's a great cook.
The plan is to recover from these procedures, gain back some strength, and get a CT scan in a couple of weeks to see whats happening inside my lungs. A secondary issue is tissue damage caused by radiation treatment, which was depositing some fluid inside the lungs, not beyond them in the pleura. The treatment for radiation pneumonitis is massive doses of steroids, so they're going to put that off for a while and hope that now that the fluid has been drained the inflammation will calm down.
Now I really feel like a lung cancer patient, I'll tell you. They sent me home with a couple of oxygen tanks, and a home care company will bring a home oxygen machine over tonight between 6-9. I was supposed to have been discharged last night, but the doc who examined me just before I was to leave was concerned about swelling in my legs and ordered another test that couldn't be performed until this morning. The Doppler study showed there is, in fact, a blood clot in my right calf, so i will have to give myself shots of blood thinnner twice a day.
Fortunately, my antidepressants starting kicking in whhile I was in Mexico, so my mental health is reasonably good, considering wht's going on. That's it for now. I'll write again tomorrow with details of Mexico trip. xox
Tuesday, June 10, 2008
Update by Proxy
This is Giudi, reporting in for Valjean at her request.
Our friend had a nice time in Mexico, including swimming with the dolphins (I'm sure she'll have a photo up here eventually), but became very short of breath the last few days. Came home, went straight to the ER, and was admitted to the USS Northwestern, where they removed about 4 liters of fluid from her lungs. On Friday she had a "minimally-invasive" surgical procedure to reattach her left lung to the chest wall. She expects to be released sometime this week, and will be back on the blog when she's up to it. We all hope that will be soon.
Our friend had a nice time in Mexico, including swimming with the dolphins (I'm sure she'll have a photo up here eventually), but became very short of breath the last few days. Came home, went straight to the ER, and was admitted to the USS Northwestern, where they removed about 4 liters of fluid from her lungs. On Friday she had a "minimally-invasive" surgical procedure to reattach her left lung to the chest wall. She expects to be released sometime this week, and will be back on the blog when she's up to it. We all hope that will be soon.
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.
Subscribe to:
Posts (Atom)
