A CLL Thanksgiving
John and Marian both have appointments with Dr. Flinn this afternoon. Because Marian spent so much time in Reno with Lillian over the summer, she missed her regular check-ups. And John is in the middle of his six rounds of chemotherapy.
Lillian has finished her chemo and radiation and is now trying to recover from it. She was hospitalized last week for an infection and she has had a very rough time since her surgery in May. But she has the best attitude and I do believe she is on the mend. I really look forward to her being back home in Evansville after she regains some strength. "They say" that it takes from six months to a year to feel yourself again after going through chemo. She has had chemo AND radiation simultaneously. I've seen what John has gone through and it's hard to imagine what Lillian has been through (because I know it's been even tougher).
Last week John's white counts dropped very low. The effects and toxicity of chemo are cumulative, so that wasn't a surprise. But you realize how vulnerable a patient is when the doctor says, "I want you to carry a thermometer and take your temperature at least three times every day. If your temp goes up even slightly above normal, you need to call me immediately."
I asked about spending Thanksgiving with our family, which would include kids from nine months to eighteen years. I was thinking that as long as all the kids were healthy, there would be no danger in spending the day with them. But I asked just to be sure. Dr. Flinn said he would check John's blood again this week before he answered that question. He said he usually advises patients to avoid being around a lot of kids because kids are exposed to so many things; you don't always know what is incubating that has not manifested in symptoms yet. He didn't say we couldn't. He said it would depend on whether John's white count and neutrophils had rebounded or gone even lower this week. But I began to think that maybe we should reconsider our plans and stay home. I don't want to take any chances when it comes to John's health. And I didn't want to put any stress on family members either (worrying that they or their kids might unknowingly expose him to anything that could make him sick).
When your immune system is as compromised as John's is now, even a cold has the potential to escalate into pneumonia. If John got H1N1, he could die from it. He is vulnerable.
Initially, I was so disappointed. I am not a "why me" person. I'm a "why not me" person. I am not prone to pity parties or wasting a lot of emotion on feeling sorry for myself. That just isn't the way I respond. Even when I feel that something is unfairly happening to me, I don't focus on the "fairness" of it (I just think about the "hurt" of it). I try as much as possible to focus on my blessings. But for about a day, I indulged myself in more than a few "I hate CLL" moments, and "Why does this have to be happening to us?"
This year won't be our most joyous Thanksgiving or Christmas or New Year's. I hate having to isolate ourselves and keep our distance from loved ones. I hate not being able to see the kids if their noses are runny. I hate that John has to endure treatment the first and the last weeks of December. I hate knowing that he will be miserable on New Year's Eve and New Year's Day. The fact is, I am really dreading the month of December. I wish I could just press a fast forward button on life and it could be February. I broke down and cried as Cheryl and I talked on the phone about our Thanksgiving plans and I shared my emotions. I felt like such a baby. After all, it's just one Thanksgiving. It's just one Christmas. It's just one New Year's. But sometimes all the emotion you're trying to juggle just gets triggered by something and you crumble.
So I cried and let the emotions surface. And now I'm fine again. John, Marian and I will have a nice, quiet Thanksgiving at home together. And suddenly that doesn't seem at all "unfortunate." I just needed to adjust my outlook and think about how thankful I am for the two of them. We will have a great Thanksgiving because we have each other. (And we will have great food!)
After I came to terms with our change in plans, I began to realize that a quiet Thanksgiving at home is probably the absolute best thing for John (even if his white count wasn't dangerously low). He has not felt like himself for months and what he needs more than anything is rest. He doesn't need a big, festive, Thanksgiving filled with activity. He needs to rest his body. Next week he faces round four. And I just want to do everything within my power to help him get through this.
As I am writing, it is occuring to me that Thanksgiving is an attitude. And I want to have that attitude no matter what my circumstances.
Lillian has finished her chemo and radiation and is now trying to recover from it. She was hospitalized last week for an infection and she has had a very rough time since her surgery in May. But she has the best attitude and I do believe she is on the mend. I really look forward to her being back home in Evansville after she regains some strength. "They say" that it takes from six months to a year to feel yourself again after going through chemo. She has had chemo AND radiation simultaneously. I've seen what John has gone through and it's hard to imagine what Lillian has been through (because I know it's been even tougher).
Last week John's white counts dropped very low. The effects and toxicity of chemo are cumulative, so that wasn't a surprise. But you realize how vulnerable a patient is when the doctor says, "I want you to carry a thermometer and take your temperature at least three times every day. If your temp goes up even slightly above normal, you need to call me immediately."
I asked about spending Thanksgiving with our family, which would include kids from nine months to eighteen years. I was thinking that as long as all the kids were healthy, there would be no danger in spending the day with them. But I asked just to be sure. Dr. Flinn said he would check John's blood again this week before he answered that question. He said he usually advises patients to avoid being around a lot of kids because kids are exposed to so many things; you don't always know what is incubating that has not manifested in symptoms yet. He didn't say we couldn't. He said it would depend on whether John's white count and neutrophils had rebounded or gone even lower this week. But I began to think that maybe we should reconsider our plans and stay home. I don't want to take any chances when it comes to John's health. And I didn't want to put any stress on family members either (worrying that they or their kids might unknowingly expose him to anything that could make him sick).
When your immune system is as compromised as John's is now, even a cold has the potential to escalate into pneumonia. If John got H1N1, he could die from it. He is vulnerable.
Initially, I was so disappointed. I am not a "why me" person. I'm a "why not me" person. I am not prone to pity parties or wasting a lot of emotion on feeling sorry for myself. That just isn't the way I respond. Even when I feel that something is unfairly happening to me, I don't focus on the "fairness" of it (I just think about the "hurt" of it). I try as much as possible to focus on my blessings. But for about a day, I indulged myself in more than a few "I hate CLL" moments, and "Why does this have to be happening to us?"
This year won't be our most joyous Thanksgiving or Christmas or New Year's. I hate having to isolate ourselves and keep our distance from loved ones. I hate not being able to see the kids if their noses are runny. I hate that John has to endure treatment the first and the last weeks of December. I hate knowing that he will be miserable on New Year's Eve and New Year's Day. The fact is, I am really dreading the month of December. I wish I could just press a fast forward button on life and it could be February. I broke down and cried as Cheryl and I talked on the phone about our Thanksgiving plans and I shared my emotions. I felt like such a baby. After all, it's just one Thanksgiving. It's just one Christmas. It's just one New Year's. But sometimes all the emotion you're trying to juggle just gets triggered by something and you crumble.
So I cried and let the emotions surface. And now I'm fine again. John, Marian and I will have a nice, quiet Thanksgiving at home together. And suddenly that doesn't seem at all "unfortunate." I just needed to adjust my outlook and think about how thankful I am for the two of them. We will have a great Thanksgiving because we have each other. (And we will have great food!)
After I came to terms with our change in plans, I began to realize that a quiet Thanksgiving at home is probably the absolute best thing for John (even if his white count wasn't dangerously low). He has not felt like himself for months and what he needs more than anything is rest. He doesn't need a big, festive, Thanksgiving filled with activity. He needs to rest his body. Next week he faces round four. And I just want to do everything within my power to help him get through this.
As I am writing, it is occuring to me that Thanksgiving is an attitude. And I want to have that attitude no matter what my circumstances.
Comments
I'm about half way through your book now and am enjoying it very much. You are an excellent writer.
A very Happy Thanksgiving to you, John and Marian, and your whole family!