Valjean took the midnight special last night -- OK, it was only 10:30 -- and is now comfortably ensconced in the Palliative Care Unit on the 16th floor of the new Prentice building at Northwestern. This morning I watched her devour French toast, pay a couple of bills, and try to comb her hair under the elastic band of her oxygen mask -- each act a moment to cherish.
She has a fabulous view of the lake, from which I expect she'll be able to see the regatta on Wednesday and, if we can twist the bed around a bit, the fireworks on Thursday. But those are future events, and what the-girl-who-lives-in-the-moment focused on was the sight of three trees growing on the unprotected balcony of a high-rise to the northeast.
Mary was present later in the day for a meeting with Korey, the unit's social worker. Korey told VJ and Mary that of all the options we had discussed, three (skilled nursing facility, L-TAC, and the Rehab Institute's cancer program) are not appropriate for various reasons. A fourth, home hospice, may not be feasible because of her acute oxygen needs. The fifth is inpatient hospice.
Korey recommended Seasons Hospice at Lincoln Park Hospital, because it's good and because it's flexible: they accept patients for a variety of reasons -- including acute symptom management (her severe shortness of breath) as well as end-of-life. Thus it might be a place she could go and stay till the end. She very much doesn't want to move.
Mary and Kate went there this afternoon, separately, to check it out. It's on one floor of a 1970s building -- the old Grant Hospital, I believe -- and the rooms are small but clean. It would be a major change from the spacious and modern accommodations of the past few weeks, "institutional" in a very different way, but both of our intrepid reporters had good encounters with the staff.
Someone from Seasons will come to the hospital on Tuesday to evaluate whether Valjean meets their criteria. There remains the question of whether they meet hers. At least two of us will be at this meeting for support. Do not call us trees.
Monday, June 30, 2008
Friday, June 27, 2008
How Can I Miss You if You Won't Go Away?
It's too bad this blog doesn't come with a soundtrack, or I'd post a rendition of Valjean's singing -- still strong, but not improved by 6 or 7 months of lung disease. The prologue:
As we feared, Dr. Patel, the oncologist, confirmed that it is not only pneumonia and radiation pneumonitis but cancer that is thriving in and around Valjean's lungs. She has started her on Tarceva, which should shrink the tumor and have some palliative effects, but is not meant to be curative. Still, Patel said she thinks Valjean could look ahead as long as three months or, if she responds particularly well to the Tarceva, even more. Valjean's response: "Three months? My friends will be saying [and she sings] 'How can I miss you if you won't go away?'"
We had a visit from the Palliative Care liaison, and it looks like Valjean will be moved there on Monday. Kate and I checked it out and gave it our seal of approval: fabulous views, big screen TV, internet access, fold-out bed in the patient rooms, an exercycle in the family lounge, very friendly and accommodating staff. I think Valjean will like it, though she's become quite attached to life in the ICU. What's not to like? "I have a room with a great view. People wait on me hand and foot. And my friends come in and shower me with love. The food could be better." (Not a lot you can do with Ensure and jello.)
We will use the week in Palliative Care(and the PC social worker) to weigh the options for next steps. We've learned that inpatient hospice is reserved for the last 2 weeks of life, so we'll be trying to learn more about long-term acute care hospitals, home hospice (combined with a 24-hour hired home health aide), and possibly a cancer program at the Rehabilitation Institute of Chicago.
As we feared, Dr. Patel, the oncologist, confirmed that it is not only pneumonia and radiation pneumonitis but cancer that is thriving in and around Valjean's lungs. She has started her on Tarceva, which should shrink the tumor and have some palliative effects, but is not meant to be curative. Still, Patel said she thinks Valjean could look ahead as long as three months or, if she responds particularly well to the Tarceva, even more. Valjean's response: "Three months? My friends will be saying [and she sings] 'How can I miss you if you won't go away?'"
We had a visit from the Palliative Care liaison, and it looks like Valjean will be moved there on Monday. Kate and I checked it out and gave it our seal of approval: fabulous views, big screen TV, internet access, fold-out bed in the patient rooms, an exercycle in the family lounge, very friendly and accommodating staff. I think Valjean will like it, though she's become quite attached to life in the ICU. What's not to like? "I have a room with a great view. People wait on me hand and foot. And my friends come in and shower me with love. The food could be better." (Not a lot you can do with Ensure and jello.)
We will use the week in Palliative Care(and the PC social worker) to weigh the options for next steps. We've learned that inpatient hospice is reserved for the last 2 weeks of life, so we'll be trying to learn more about long-term acute care hospitals, home hospice (combined with a 24-hour hired home health aide), and possibly a cancer program at the Rehabilitation Institute of Chicago.
Thursday, June 26, 2008
Launching Pad
Valjean and I (this is still Giudi) spoke this afternoon with Dr. Preodor from Palliative Care and learned that PC is meant for very short-term stays, usually 5 to 7 days. For a longer stay, should recovery not be in the cards, she would probably need to go to an inpatient hospice, which we will look into. ("I thought I'd go to Palliative Care and that would be the end of it," said VJ. "Apparently not.")
But it sounds like PC might be a good launching pad to inpatient hospice or other next steps. They have a social worker on the floor who can help find an appropriate place, get whatever pre-certification is required and so on. (Valjean has been waiting three days since her request to have a social worker visit her in the ICU.)
We were told that Dr. Patel, her oncologist, "is on board with" palliative care. But we have not heard from Patel herself that there are no options for treating the cancer. That meeting is scheduled for tomorrow.
But it sounds like PC might be a good launching pad to inpatient hospice or other next steps. They have a social worker on the floor who can help find an appropriate place, get whatever pre-certification is required and so on. (Valjean has been waiting three days since her request to have a social worker visit her in the ICU.)
We were told that Dr. Patel, her oncologist, "is on board with" palliative care. But we have not heard from Patel herself that there are no options for treating the cancer. That meeting is scheduled for tomorrow.
Wednesday, June 25, 2008
No Weasly Answers
On Tuesday evening Valjean, Mary (her medical power-of-attorney) and I had another frank talk with Dr. Sporn, the pulmonologist. This time the discussion was not in an emergency situation, and VJ was in prime interview mode, posing carefully considered questions and giving no quarter to weasly answers. She's given me permission to be frank on the blog as well.
Dr. Sporn described Valjean's condition as having plateaued, with no significant change since last Friday. While there remains some hope of turning around the acute problem -- apparently severe pneumonia -- he said that the longer she remains on this plateau, the smaller the odds of her recovery. If her condition worsens and she goes on a ventilator, he said, there is no chance it will turn around. In addition, the fluid around her lungs (malignant pleural effusion), which continues building up even as it's drained, indicates a more advanced state of cancer.
Valjean was loud and clear: "I'm not going on the ventilator." So while Dr. Sporn said there's no risk in trying one more course of antibiotics, and Valjean agreed, she also asked for and received a DNR (Do Not Resuscitate) order, which would prohibit an emergency intubation.
Sporn thinks that if she's really improving, it should become more clear-cut over the next several days. As I write this, she's supposed to be having another CT to see if they can detect any changes, for good or for ill. Meanwhile, we discussed options such as long-term acute care (if it looks like there's a chance for improvement over a longer period of time), hospice (at home, which Sporn agrees is not really viable, given her need for breathing assistance), and palliative care, a kind of in-hospital hospice, at Northwestern, where the treatment goal would be comfort rather than recovery. Valjean and Sporn agreed that this sounds like the best option, barring recovery. We hope to meet with the palliative care team tomorrow afternoon, to learn more about the program.
I know it's difficult not to know what's happening. I'll continue to update the blog as soon as I can, whenever there are new developments.
Dr. Sporn described Valjean's condition as having plateaued, with no significant change since last Friday. While there remains some hope of turning around the acute problem -- apparently severe pneumonia -- he said that the longer she remains on this plateau, the smaller the odds of her recovery. If her condition worsens and she goes on a ventilator, he said, there is no chance it will turn around. In addition, the fluid around her lungs (malignant pleural effusion), which continues building up even as it's drained, indicates a more advanced state of cancer.
Valjean was loud and clear: "I'm not going on the ventilator." So while Dr. Sporn said there's no risk in trying one more course of antibiotics, and Valjean agreed, she also asked for and received a DNR (Do Not Resuscitate) order, which would prohibit an emergency intubation.
Sporn thinks that if she's really improving, it should become more clear-cut over the next several days. As I write this, she's supposed to be having another CT to see if they can detect any changes, for good or for ill. Meanwhile, we discussed options such as long-term acute care (if it looks like there's a chance for improvement over a longer period of time), hospice (at home, which Sporn agrees is not really viable, given her need for breathing assistance), and palliative care, a kind of in-hospital hospice, at Northwestern, where the treatment goal would be comfort rather than recovery. Valjean and Sporn agreed that this sounds like the best option, barring recovery. We hope to meet with the palliative care team tomorrow afternoon, to learn more about the program.
I know it's difficult not to know what's happening. I'll continue to update the blog as soon as I can, whenever there are new developments.
Monday, June 23, 2008
Holding Steady...Still Having Fun
Valjean has had a slew of visitors over the past few days, napping in between, and -- social creature that she is -- thoroughly enjoyed seeing everyone. (Too bad none of them play pinochle.) She's in good spirits, though her medical condition is essentially unchanged since Friday. In the words of today's attending doc [the incongruously named Michael Moore]: You still have a very severe pneumonia.
This morning, because the tube they'd inserted in her pleural cavity on Friday wasn't draining well, the interventional radiologist injected a clot-buster, which did get things moving. This should make her breathing easier, though the first effect is increased pain, which they're very good at dealing with. (As Valjean says, "better living through chemistry.")
Longer term... well, it's still very uncertain. The doctors have said that improvement is possible, but it's likely to be very slow, and a nursing home may be in her future. Valjean is giving clear and careful thought to all possibilities and choices the future may bring. She asked to have a social worker come up to talk about insurance issues, so she's still very much in charge. And she's adamant about one thing: "I'm still having fun."
This morning, because the tube they'd inserted in her pleural cavity on Friday wasn't draining well, the interventional radiologist injected a clot-buster, which did get things moving. This should make her breathing easier, though the first effect is increased pain, which they're very good at dealing with. (As Valjean says, "better living through chemistry.")
Longer term... well, it's still very uncertain. The doctors have said that improvement is possible, but it's likely to be very slow, and a nursing home may be in her future. Valjean is giving clear and careful thought to all possibilities and choices the future may bring. She asked to have a social worker come up to talk about insurance issues, so she's still very much in charge. And she's adamant about one thing: "I'm still having fun."
Sunday, June 22, 2008
Her Inner Dolphin
Valjean asked me to post some photos from her recent trip to Puerto Vallarta, where she spent some time with Franny (left?) and Nancy (right?) getting in touch with her inner dolphin.
Saturday, June 21, 2008
Good Progress!
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.
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.
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.
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