Nothing much to report. No one called either of us yesterday. Phil called the clinic and talked to a nurse who said the doctor at the University of Utah Hospital now has all his records. So we wait . . .
Our phones haven't been working very well. Last night before I went to bed I checked for messages and couldn't believe it when I realized that Dr. Madison called on Thursday at 1:04 p.m. He had visited with Terry, sorry he missed me, call back. How did I miss that??? SO DISCOURAGING. After trying so hard to make something happen, I WAS THE ONE WHO DROPPED THE BALL. That was an agonizing discovery.
If we don't hear from the University Hospital on Monday, I'll call Dr. Madison to see how fast we can get the scoping done at Southwest Memorial in Cortez, Colorado.
As always, Phil is in great spirits and we're very optimistic!
At University Hospital Feb. 2011
February 11, 2011 at University of Utah Hospital
Saturday, January 29, 2011
Friday, January 28, 2011
Still waiting . . .
Phil has to have an endoscopy and a colonoscopy. We're so remote, and the surgeon who does these procedures only practices at Blue Mountain Hospital on Mondays and Fridays. Right now he's on vacation and won't be back till February 7. We have a consult scheduled that day, but that's just too long to wait just to discuss what happens next. I want to take Phil straight to Huntsman Cancer Institute but they won't accept new patients unless these procedures have been done and they have a cancer diagnosis.
Yesterday I got radical and told Michele we wanted to go directly to Huntsman, regardless of their policy, and would she please fight for that. I told her they would probably just repeat all the tests and we didn't want that. We want to move fast and we want the best possible treatment. We want a seamless continuum of care and that will be easier if Huntsman is involved from the start. Michele said she'd try.
In the meantime, our daughter Liz suggested contacting Dr. John Hayes, who successfully treated Phil five years ago for prostate cancer. Phil contacted his office. My mom thought of calling my brother, Terry who practices at Southwest Memorial Hospital in Cortez. As a podiatrist, he has a lot of connections and he contacted Dr. Madison, their surgeon, but that hasn't panned out. And Phil said he might try finding someone in Moab, but so far, no luck there, either.
Last night Michele called to report that she found a doctor at University of Utah Hospital who agreed to look at all Phil's records to decide about accepting him as a new patient. So Michele contacted Dr. Hayes and was waiting for his files so she could send everything together. If Phil gets treated at University Hospital he shouldn't have to go through the tests again. University Hospital and Huntsman use the same electronic files, we'll be in the system and Phil can be transferred directly to Huntsman.
Still waiting for any word on that . . .
Yesterday I got radical and told Michele we wanted to go directly to Huntsman, regardless of their policy, and would she please fight for that. I told her they would probably just repeat all the tests and we didn't want that. We want to move fast and we want the best possible treatment. We want a seamless continuum of care and that will be easier if Huntsman is involved from the start. Michele said she'd try.
In the meantime, our daughter Liz suggested contacting Dr. John Hayes, who successfully treated Phil five years ago for prostate cancer. Phil contacted his office. My mom thought of calling my brother, Terry who practices at Southwest Memorial Hospital in Cortez. As a podiatrist, he has a lot of connections and he contacted Dr. Madison, their surgeon, but that hasn't panned out. And Phil said he might try finding someone in Moab, but so far, no luck there, either.
Last night Michele called to report that she found a doctor at University of Utah Hospital who agreed to look at all Phil's records to decide about accepting him as a new patient. So Michele contacted Dr. Hayes and was waiting for his files so she could send everything together. If Phil gets treated at University Hospital he shouldn't have to go through the tests again. University Hospital and Huntsman use the same electronic files, we'll be in the system and Phil can be transferred directly to Huntsman.
Still waiting for any word on that . . .
Thursday, January 27, 2011
Here's the latest . . .
To get the word out, I'm going to start this blog about what's going on since the doctors told us they suspect Phil's cancer has returned. Here's some of my notes so far.
It's 3:00 a.m. on Thursday, January 26, 2011 and we just got home from the hospital. Phil had to have a blood transfusion--two pints of blood and Lasix via IV. The Lasix is for water retention. The blood is for raising his very low red blood cell count. Normal hematocrit for a man is 47--Phil's was 27. Normal hemoglobin is 12--Phil's was 6. We've been given two possible causes 1) internal bleeding (though he showed no signs), or 2) his cancer has returned.
Phil went in on Wednesday, January 25, for a 3:00 p.m. appointment with our provider, Michele Lyman, PA (Physician's Assistant) to check a sore on his leg that wasn't healing and see why his legs were swelling. He left 12 hours later, after being sent across the hall to the hospital for an outpatient blood transfusion. I was at work when Phil called around 4:30 p.m. to tell me what was happening. I called Becky and she went over immediately (and stayed till 11:00 p.m., and I was so grateful for that!). I left my office in Monticello and arrived at Blue Mountain Hospital in Blanding around 5:00 p.m. Then it was hurry up and wait.
At 8:00 p.m., after typing, cross-matching, and warming the blood, the transfusion finally began. The blood had to drip very slowly--about 2 hours/unit) but luckily Phil slept through most of it, till it was finished at just after 1:30 a.m. Then we had to wait an hour for a blood test--which was really about an hour and a half--and then we went home.
Phil was anxious to get to work because he usually leaves by 2:15 a.m., so he jumped in the shower and rushed off to Moab! (Yes, he's crazy!) They told him he'd feel better after the transfusion, but Phil said he never knew he didn't feel better before it. He's such a brick!
As for me, I'm a big baby and I was so wired I couldn't go to sleep till 6:00 a.m. Three hours later the phone rang and it was Michele calling to give me a report. The transfusion had raised Phil's levels by 3 counts (out of 6 possible). Michele said she and Dr. Nielson and Dr. Jones agree that cancer is the only possible reason for what's happeing. I asked if she suspect bone cancer, since Phil had prostate cancer five years ago and if prostate cancer metasticizes it usually goes to the bone. Michele said there's no reason to speculate; it could be a completely new cancer not related to his previous cancer.
It's just so hard not knowing and having to wait to find out . . .
It's 3:00 a.m. on Thursday, January 26, 2011 and we just got home from the hospital. Phil had to have a blood transfusion--two pints of blood and Lasix via IV. The Lasix is for water retention. The blood is for raising his very low red blood cell count. Normal hematocrit for a man is 47--Phil's was 27. Normal hemoglobin is 12--Phil's was 6. We've been given two possible causes 1) internal bleeding (though he showed no signs), or 2) his cancer has returned.
Phil went in on Wednesday, January 25, for a 3:00 p.m. appointment with our provider, Michele Lyman, PA (Physician's Assistant) to check a sore on his leg that wasn't healing and see why his legs were swelling. He left 12 hours later, after being sent across the hall to the hospital for an outpatient blood transfusion. I was at work when Phil called around 4:30 p.m. to tell me what was happening. I called Becky and she went over immediately (and stayed till 11:00 p.m., and I was so grateful for that!). I left my office in Monticello and arrived at Blue Mountain Hospital in Blanding around 5:00 p.m. Then it was hurry up and wait.
At 8:00 p.m., after typing, cross-matching, and warming the blood, the transfusion finally began. The blood had to drip very slowly--about 2 hours/unit) but luckily Phil slept through most of it, till it was finished at just after 1:30 a.m. Then we had to wait an hour for a blood test--which was really about an hour and a half--and then we went home.
Phil was anxious to get to work because he usually leaves by 2:15 a.m., so he jumped in the shower and rushed off to Moab! (Yes, he's crazy!) They told him he'd feel better after the transfusion, but Phil said he never knew he didn't feel better before it. He's such a brick!
As for me, I'm a big baby and I was so wired I couldn't go to sleep till 6:00 a.m. Three hours later the phone rang and it was Michele calling to give me a report. The transfusion had raised Phil's levels by 3 counts (out of 6 possible). Michele said she and Dr. Nielson and Dr. Jones agree that cancer is the only possible reason for what's happeing. I asked if she suspect bone cancer, since Phil had prostate cancer five years ago and if prostate cancer metasticizes it usually goes to the bone. Michele said there's no reason to speculate; it could be a completely new cancer not related to his previous cancer.
It's just so hard not knowing and having to wait to find out . . .
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