Last evening Pete called me into his room because he wanted me to look at something. The "something" turned out to be a rather large, reddish area along his groin area. It almost looked like a burn and the skin was rough.
One of the first questions they ask every time we see anyone at MSKCC is "have you noticed a rash?" I told him to call them and let them know that he seems to have what may be a rash. He said that earlier the area was a bit itchy but now was not.
He did call and spoke to a doctor who told him to keep an eye on it, keep it hydrated, and if there was any change to call back. Well, it's morning, and he's still asleep, so I guess that's a good thing. I'll have to wait until he wakes up to find out if it's still there or has changed at all.
One thing I can say for the doctors at Sloan is that if you don't speak to one immediately when you call, they get back to you within minutes.
Saturday, September 26, 2009
Tuesday, September 22, 2009
Some Good, Some Not - September 22, 2009
We spoke with Dr. K (MSKCC) regarding the results of last Thursday's CT scan before they started the chemo today. She said that they were a bit confusing because some of the lesions had reduced in size, others had increased and some are unchanged. One seems to have disappeared, but there is now a lymph node near his heart that is affected, but it was not in the previous scan.
She seemed cautiously optimistic but also very concerned about the mixed results. I asked her if it was at all possible that it is due to the fact that there was almost a month between the scan and the first chemo treatment. She checked the dates for each and said that might explain it.
If there were no changes or if there were only increases in the size or number then she would change to a different treatment, one that is less tolerable and has more pronounced side effects. She felt that the scan results were not definitive enough to warrant that change and so he will remain with the original treatments for 2 full cycles (about 5-6 weeks) and then another scan.
I would feel better about this if there had NOT been that stupid lymph node. And of all places, near his heart.
She seemed cautiously optimistic but also very concerned about the mixed results. I asked her if it was at all possible that it is due to the fact that there was almost a month between the scan and the first chemo treatment. She checked the dates for each and said that might explain it.
If there were no changes or if there were only increases in the size or number then she would change to a different treatment, one that is less tolerable and has more pronounced side effects. She felt that the scan results were not definitive enough to warrant that change and so he will remain with the original treatments for 2 full cycles (about 5-6 weeks) and then another scan.
I would feel better about this if there had NOT been that stupid lymph node. And of all places, near his heart.
Saturday, September 19, 2009
One Day at a Time - September 19, 2009
My son's in a difficult situation because his FMLA leave is dwindling and if he doesn't leave work he'll be cut to part-time because of his absences, and there goes his medical insurance. The cost of one treatment is 5 figures, and I'm not including the numbers after the decimal point.
Seeing him every day I didn't realize the change in his appearance until I took a good look at him when he sat down to dinner the other night. He is ghost white and has dropped quite a bit of weight. I sure hope these chemo treatments are doing as much damage to the cancer cells as they are to the rest of his body.
Today my daughter, a teacher in CA, is attending the funeral of one of her students. The boy, who was just a high school sophomore, passed away suddenly and unexpectedly.
I wish I could make things better for both of my kids. With my daughter on the other coast I can't even give her a hug when she needs one. At least I can hug my son.
Seeing him every day I didn't realize the change in his appearance until I took a good look at him when he sat down to dinner the other night. He is ghost white and has dropped quite a bit of weight. I sure hope these chemo treatments are doing as much damage to the cancer cells as they are to the rest of his body.
Today my daughter, a teacher in CA, is attending the funeral of one of her students. The boy, who was just a high school sophomore, passed away suddenly and unexpectedly.
I wish I could make things better for both of my kids. With my daughter on the other coast I can't even give her a hug when she needs one. At least I can hug my son.
Thursday, September 17, 2009
Hope and Fear - September 17, 2009
Today Pete has the first CT scan since the chemo began. The doctors have indicated that they should be able to see some results, some change since the original scan. I don't think we'll be getting the results today because the scan is being done in the Basking Ridge facility and the doctors are at the main campus in Manhattan. He has an appointment there this coming Tuesday.
The treatments are beginning to affect him to the point where he is applying for disability. The people at work have been very supportive, but it's becoming very difficult for him to continue working. There is also a concern, because he works in the pharmacy, that his close contact with so many people who may be harboring germs, bacteria, viruses (including H1N1), etc. may jeopardize his health due to his weakened immune system.
I'm hoping that there will be such a marked improvement on the scan that they will tell us before we leave today.
The treatments are beginning to affect him to the point where he is applying for disability. The people at work have been very supportive, but it's becoming very difficult for him to continue working. There is also a concern, because he works in the pharmacy, that his close contact with so many people who may be harboring germs, bacteria, viruses (including H1N1), etc. may jeopardize his health due to his weakened immune system.
I'm hoping that there will be such a marked improvement on the scan that they will tell us before we leave today.
Thursday, September 3, 2009
Losing His Hair - September 03, 2009
Pete came home from work a little early today. He said he was just feeling a bit off and quite tired. While I was getting the dogs' dinners ready he came out into the kitchen and said, "Well, looks like I'm losing my hair."
Now, you've got to understand that my son began losing the hair on his head somewhere in his mid-to-late 20s and decided that he was absolutely NOT going to have a bad comb-over like his father, so... He's had a shaved head for years now. But he's had a very neat goatee for even longer.
When he started the chemo we had joked about not having to worry about going bald, but what he was holding up in his fingers when he made the comment were some hairs from his goatee. It would have been funny if he didn't say it the way he did. I think those hairs were a very tangible reminder of what is going on.
On the more positive side, I got an email from a teacher who retired from my school several years ago. Her son was diagnosed with cancer just a few years after I started teaching there, so I'm talking 20+ years ago. He was a freshman at Rutgers U at the time. She had written to tell me that she would be praying for my son and all of us.
I didn't know much about cancer back then, so I asked her what type of cancer it was. She responded it was osteosarcoma, and considered a "childhood" cancer that affects both soft tissue and bone, and though there are only several thousand cases of the soft-tissue sarcoma that Pete has, her son was only 1 of about 700 cases. He did lose his leg, but the good news is that he's still going strong. Pete's sarcoma doesn't affect the bone and is generally found in older people (by that I mean considerably older than my son who was 33 when diagnosed). Hearing that Martin faced this disease, but more importantly, a sarcoma, and survived makes me more optimistic. He also was treated at MSKCC in Manhattan.
Now, you've got to understand that my son began losing the hair on his head somewhere in his mid-to-late 20s and decided that he was absolutely NOT going to have a bad comb-over like his father, so... He's had a shaved head for years now. But he's had a very neat goatee for even longer.
When he started the chemo we had joked about not having to worry about going bald, but what he was holding up in his fingers when he made the comment were some hairs from his goatee. It would have been funny if he didn't say it the way he did. I think those hairs were a very tangible reminder of what is going on.
On the more positive side, I got an email from a teacher who retired from my school several years ago. Her son was diagnosed with cancer just a few years after I started teaching there, so I'm talking 20+ years ago. He was a freshman at Rutgers U at the time. She had written to tell me that she would be praying for my son and all of us.
I didn't know much about cancer back then, so I asked her what type of cancer it was. She responded it was osteosarcoma, and considered a "childhood" cancer that affects both soft tissue and bone, and though there are only several thousand cases of the soft-tissue sarcoma that Pete has, her son was only 1 of about 700 cases. He did lose his leg, but the good news is that he's still going strong. Pete's sarcoma doesn't affect the bone and is generally found in older people (by that I mean considerably older than my son who was 33 when diagnosed). Hearing that Martin faced this disease, but more importantly, a sarcoma, and survived makes me more optimistic. He also was treated at MSKCC in Manhattan.
Wednesday, September 2, 2009
And So It Starts Over - September 02, 2009
Tuesday the chemo started over with the single dose. Next Tuesday, the double dose followed by white blood cell booster on Thursday.
His reaction so far, is good. He wasn't completely wiped out like he was after the last 2 times. Tomorrow will be the real test, though, as he felt pretty good the day after each of the other treatments and didn't really feel lousy until the second day.
The 17th is the big day. That's when he's scheduled for the CT scan. The nurse said that if there is any change they should be able to see it then.
My routine gets all thrown out of whack when I drive into the city. I don't track what I eat on those days, at least not on the computer. I still keep track mentally, but I know I don't wind up as "balanced" as I do when I enter it into the nutrition tracker.
The fire out near where my daughter lives in California is still burning, but it is contained.
Tomorrow is another day.
His reaction so far, is good. He wasn't completely wiped out like he was after the last 2 times. Tomorrow will be the real test, though, as he felt pretty good the day after each of the other treatments and didn't really feel lousy until the second day.
The 17th is the big day. That's when he's scheduled for the CT scan. The nurse said that if there is any change they should be able to see it then.
My routine gets all thrown out of whack when I drive into the city. I don't track what I eat on those days, at least not on the computer. I still keep track mentally, but I know I don't wind up as "balanced" as I do when I enter it into the nutrition tracker.
The fire out near where my daughter lives in California is still burning, but it is contained.
Tomorrow is another day.
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