The funny thing about getting treated at Roswell Park is you get to experience the entire gamut of human competence.
You get the great people, like Dr. Wang, Dr. Baer and Barb, and the nurses and the cafeteria workers (yes, even the cafeteria workers are cool).
But then you get the not so great people, like the pharmacist who , charged with ordering the chemotherapy drug on Friday, sent the order to the drug company, but neglected to stick around for the tracking number.
So me, he of the relapsed Leukemia, did not get the swanky new chemo drug I was expecting today, likely due in my opinion to one person's case of Friday afternoon disease.
You know what friday afternoon disease, is, right? It's closely related to the Monday morning sickness, and cousin of the ever-popular Monday-morning car failure plague that sweeps the nation's office buildings on rainy, cloudy beginnings of the week around the country.
The day wasn't a total wash, however. I did get my fancy new PICC line, a catheter which was threaded into my arm, through my veins and very close to my heart. It looks a lot like my original central line catheter, except it is blue and sticking out of my left arm. It's very attractive.
So, tomorrow I get this new fancy drug (maybe), a long hydration, and hopefully a bit more peace of mind. Time to kill the cancer cells!!
Monday, April 30, 2007
Saturday, April 28, 2007
Relapse
In college, I would have called it dramatic irony.
The last few weeks had been fantastic. I had returned to work, returned to my social life, reassumed the duties and the social connections so important to myself and my family. I'd been greeted by warm, happy people many times a day, people whose warm wishes were met with one response. "I feel great!," I told most everyone. "I feel even better now than I did a year ago.
But I found out on Friday that my leukemia has relapsed.
The worry began Wednesday during a follow up visit to Roswell park for a bone marrow biopsy. Dr. Wang had met with us, and eventually told me that my blood tests revealed that I could not have the biopsy for which we had travelled to Buffalo. My blood counts had not recovered the way they should, and though this was somewhat concerning, at that moment it was more of a clerical problem when it came to the biopsy. The doctors needed to do the biopsy when my counts had reached a certain level, and not before.
We left for home a bit disappointed, but not worried. About 4:30 p.m. Dr. Wang called me on my home phone: There was something weird with the blood tests done earlier that day, and I would need to return to RPCI the next Wednesday, a week before the next scheduled appointment we had made that morning.
I, of course, was concerned. Panic would be a better description. So I got on the phone to Barb Anderson, trusty research nurse, who assured me she would get me into the clinic on Friday for a biopsy.
Barb has this great way of getting things done, and everything was quickly set up for Friday. All that was left was the waiting and the worry. Barb had explained the problem with the blood tests. The tests had revealed 3% lymphoblasts, an immature white blood cell. It is normal for one's body to make one or two of these occasionally, but 3% is at least 3 times what is acceptable for the norm. The lymphoblasts found in blood are often decendents of leukemic stem cells in the marrow. Hence the doctors' concern.
So, Friday morning I got in the Scion about 6 a.m. and headed up to Buffalo. I had decided that no matter what the news, it would be easier on me to keep my head down, get up there, get the news and deal with it. As such, I was worried, but once on the road with Starbucks and the radio, it was just like any other trip.
Dr. Wang performed the Biopsy about 12:00. I have described this procedure before, and Dr. Wang did the often painful operation with patience and expertise, and I had no pain whatsoever.
Beforehand she had explained the plan. If I had a relapse, and the evidence certainly was pointing that way, even from the preliminary tests done Wednesday, I would have to start chemotherapy immediately. Eventually I would need a bone marrow transplant, just as soon as I could get the leukemic cells depressed enough to do the transplant. "You have a lot of treatment ahead of you," she said.
As I was chewing on all of this out in the lobby, calling people and generally nursing my sore backside (the biopsy is done in a spot that is irritated by sitting), Dr. Wang came bursting out of the hematology clinic directly across from me. She thrust the papers in her hand into my lap, and pointed under the "blast" section.
There were 15% blasts in my blood. The thing about this, she explained, is that generally a high amount of blasts in the peripheral (veins and arteries) blood means even more leukemic cells in the marrow. This meant that I almost certainly had a relapse.
After that, things moved quickly and the results of that day's biopsy were almost beside the point. I was set up for an appointment Monday morning in the chemo clinic for the administration of a newly approved drug just for people with relapsed T-cell ALL. Dr. Wang and I agreed we would immediately reactivate my transplant donor search, and recontact the donors who had already been matched to my genetic markers. Lodging arrangements were made, insurance issues were worked out, appointments were confirmed.
Meanwhile, the results of the biopsy came back showing the disease had definitely returned. This was for real!
I have been slow to like Dr. Wang. We got off on the wrong foot when I was inpatient at Roswell in July 2006. But I'm really glad I chose her. She worked the entire afternoon on my case, in a hands-on way that made sure things got done. I am very grateful for her quick action. In addition, she has done a fantastic job of explaining my options and has very patiently and personally advised me of what is going to happen next.
So, what's next: Monday up to Roswell for this chemo. The new stuff will be administered Monday, Wednesday and Friday. I'll stay in the area for a few more days after the treatment for observation and some testing and screening for the bone marrow transplant. If all works out, I'll head back into the hospital for the BMT in late May. I'll get into what all that entails when the time gets closer.
In the meantime, I'm of course not going to work, have gone back on disability. Aside from that, Diane and I are doing great. Believe it or not, it is so much a relief to know what's wrong and have a plan in place to get the problem fixed. Even though that problem means many more days in the hospital, and much more time separated from my life, family and friends, it's the only thing to do.
Thank everyone so much for their support up until this point, and I'll try to post regularly with updates and explanations as they come along.
The last few weeks had been fantastic. I had returned to work, returned to my social life, reassumed the duties and the social connections so important to myself and my family. I'd been greeted by warm, happy people many times a day, people whose warm wishes were met with one response. "I feel great!," I told most everyone. "I feel even better now than I did a year ago.
But I found out on Friday that my leukemia has relapsed.
The worry began Wednesday during a follow up visit to Roswell park for a bone marrow biopsy. Dr. Wang had met with us, and eventually told me that my blood tests revealed that I could not have the biopsy for which we had travelled to Buffalo. My blood counts had not recovered the way they should, and though this was somewhat concerning, at that moment it was more of a clerical problem when it came to the biopsy. The doctors needed to do the biopsy when my counts had reached a certain level, and not before.
We left for home a bit disappointed, but not worried. About 4:30 p.m. Dr. Wang called me on my home phone: There was something weird with the blood tests done earlier that day, and I would need to return to RPCI the next Wednesday, a week before the next scheduled appointment we had made that morning.
I, of course, was concerned. Panic would be a better description. So I got on the phone to Barb Anderson, trusty research nurse, who assured me she would get me into the clinic on Friday for a biopsy.
Barb has this great way of getting things done, and everything was quickly set up for Friday. All that was left was the waiting and the worry. Barb had explained the problem with the blood tests. The tests had revealed 3% lymphoblasts, an immature white blood cell. It is normal for one's body to make one or two of these occasionally, but 3% is at least 3 times what is acceptable for the norm. The lymphoblasts found in blood are often decendents of leukemic stem cells in the marrow. Hence the doctors' concern.
So, Friday morning I got in the Scion about 6 a.m. and headed up to Buffalo. I had decided that no matter what the news, it would be easier on me to keep my head down, get up there, get the news and deal with it. As such, I was worried, but once on the road with Starbucks and the radio, it was just like any other trip.
Dr. Wang performed the Biopsy about 12:00. I have described this procedure before, and Dr. Wang did the often painful operation with patience and expertise, and I had no pain whatsoever.
Beforehand she had explained the plan. If I had a relapse, and the evidence certainly was pointing that way, even from the preliminary tests done Wednesday, I would have to start chemotherapy immediately. Eventually I would need a bone marrow transplant, just as soon as I could get the leukemic cells depressed enough to do the transplant. "You have a lot of treatment ahead of you," she said.
As I was chewing on all of this out in the lobby, calling people and generally nursing my sore backside (the biopsy is done in a spot that is irritated by sitting), Dr. Wang came bursting out of the hematology clinic directly across from me. She thrust the papers in her hand into my lap, and pointed under the "blast" section.
There were 15% blasts in my blood. The thing about this, she explained, is that generally a high amount of blasts in the peripheral (veins and arteries) blood means even more leukemic cells in the marrow. This meant that I almost certainly had a relapse.
After that, things moved quickly and the results of that day's biopsy were almost beside the point. I was set up for an appointment Monday morning in the chemo clinic for the administration of a newly approved drug just for people with relapsed T-cell ALL. Dr. Wang and I agreed we would immediately reactivate my transplant donor search, and recontact the donors who had already been matched to my genetic markers. Lodging arrangements were made, insurance issues were worked out, appointments were confirmed.
Meanwhile, the results of the biopsy came back showing the disease had definitely returned. This was for real!
I have been slow to like Dr. Wang. We got off on the wrong foot when I was inpatient at Roswell in July 2006. But I'm really glad I chose her. She worked the entire afternoon on my case, in a hands-on way that made sure things got done. I am very grateful for her quick action. In addition, she has done a fantastic job of explaining my options and has very patiently and personally advised me of what is going to happen next.
So, what's next: Monday up to Roswell for this chemo. The new stuff will be administered Monday, Wednesday and Friday. I'll stay in the area for a few more days after the treatment for observation and some testing and screening for the bone marrow transplant. If all works out, I'll head back into the hospital for the BMT in late May. I'll get into what all that entails when the time gets closer.
In the meantime, I'm of course not going to work, have gone back on disability. Aside from that, Diane and I are doing great. Believe it or not, it is so much a relief to know what's wrong and have a plan in place to get the problem fixed. Even though that problem means many more days in the hospital, and much more time separated from my life, family and friends, it's the only thing to do.
Thank everyone so much for their support up until this point, and I'll try to post regularly with updates and explanations as they come along.
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