Excepting the fact that this never should have happened, here's how this should have gone:
Doctor: "You have cancer. It's called CML."
Me: "Bummer. What should we do?"
Doctor: "Well first off, since we've caught this in the early stages and you don't yet have children you should immediately go down to your local sperm bank and make a few deposits."
Me: "Why?"
Doctor: "Well, you're not supposed to conceive while on Gleevec."
Me: "Oh. Okay. I'll be right back."
(3 days pass, during which I pleasure myself several times in the name of my future children.)
Me: "Okay. All set."
Doctor: "Great! Let's get you started on Gleevec. Hopefully in 1 year you'll be in remission."
Me: "Great."
Doctor: "Ice cream?"
Me: "Why sure!"
(We skip gleefully hand in hand down to the local ice cream shop.)
But it didn't. I got on Gleevec before I could donate "material". No one mentioned that this would be a big deal, or even brought it up till we asked. Plus, I wasn't all that worried since we had a little one brewing.
Now we're fucked. And we didn't have to be in this position if things were handled differently. I would even say, if things were handled correctly. I don't want to be upset with my doctor, but isn't it things like this that make the difference between good care and great care? Between a living patient and a patient living happily?
Tuesday, July 22, 2008
Monday, July 21, 2008
Hope Dies Anew
Fuck.
We went to Stanford today to talk with Dr. Coutre about what to do with a low white cell count and what we needed to do to get pregnant.
First off my white cell count today is 2,100. That's pretty low. I'm off the Gleevec till it comes back up to normal. Apparently this could take 1 to 2 weeks.
There are three types of responses to treatment for CML. A "complete hematologic response" is when your blood work shows normal cell counts. A "complete cytogentic response" is when there are no marrow cells with the Ph chromosome and no blood cells containing the BCR-ABL oncogene detected by FISH. A "complete molecular response" is when PCR testing reveals no BCR-ABL oncogene-containing cells in the blood.
In short, hematologic is good, cytogentic is better and molecular is best.
Dr. Coutre said that he does not recommend conceiving while on Gleevec. I would need to be off it for at least 2 weeks. In addition, he does not recommend getting off the Gleevec until I have achieved a "complete cytogentic response". This could take 6-18 months.
Fuck.
There is a small chance that I'll be off the Gleevec long enough right now waiting for my cell counts to come back up to normal that we could try this month. That would require us to figure out how to actually go about that within the next 1-2 weeks though. It's a long shot that I'm really not sure we're up to it right now.
That means that, if things go well, Wendy and I can't start trying to have a child again for at least 6 months. Possibly as long as 18 months.
If things go well.
Today has not been a good day. I was assuming I could get off the Gleevec now and figure out how to conceive through whatever expensive magic the local fertility clinic could conjure up. Now we have to wait for up to one and a half years before we can even start trying to have a family again.
This is not fair, and we don't deserve this. We want to start a family very badly. We've already been trying for over year and it's already been a tough road even without the cancer. Now we're on hold.
My Blood Hates Me.
We went to Stanford today to talk with Dr. Coutre about what to do with a low white cell count and what we needed to do to get pregnant.
First off my white cell count today is 2,100. That's pretty low. I'm off the Gleevec till it comes back up to normal. Apparently this could take 1 to 2 weeks.
There are three types of responses to treatment for CML. A "complete hematologic response" is when your blood work shows normal cell counts. A "complete cytogentic response" is when there are no marrow cells with the Ph chromosome and no blood cells containing the BCR-ABL oncogene detected by FISH. A "complete molecular response" is when PCR testing reveals no BCR-ABL oncogene-containing cells in the blood.
In short, hematologic is good, cytogentic is better and molecular is best.
Dr. Coutre said that he does not recommend conceiving while on Gleevec. I would need to be off it for at least 2 weeks. In addition, he does not recommend getting off the Gleevec until I have achieved a "complete cytogentic response". This could take 6-18 months.
Fuck.
There is a small chance that I'll be off the Gleevec long enough right now waiting for my cell counts to come back up to normal that we could try this month. That would require us to figure out how to actually go about that within the next 1-2 weeks though. It's a long shot that I'm really not sure we're up to it right now.
That means that, if things go well, Wendy and I can't start trying to have a child again for at least 6 months. Possibly as long as 18 months.
If things go well.
Today has not been a good day. I was assuming I could get off the Gleevec now and figure out how to conceive through whatever expensive magic the local fertility clinic could conjure up. Now we have to wait for up to one and a half years before we can even start trying to have a family again.
This is not fair, and we don't deserve this. We want to start a family very badly. We've already been trying for over year and it's already been a tough road even without the cancer. Now we're on hold.
My Blood Hates Me.
Saturday, July 19, 2008
Another Day On the Couch
Some days I have no energy. Since starting the Gleevec I'm prone to low energy, lethargy, fatigue and light headed-ness. I spent all day today on the couch. We had to cancel dinner with our friends because I wasn't up to it. I've had 4 or 5 other days like this.
Getting out of bed in the morning is getting harder and harder. I rarely get up before 10am anymore. When I do I'm tired all day and usually can't make it through without a long nap.
Sometimes I feel 70 instead of 30.
Getting out of bed in the morning is getting harder and harder. I rarely get up before 10am anymore. When I do I'm tired all day and usually can't make it through without a long nap.
Sometimes I feel 70 instead of 30.
A Nice Gift
My sister-in-law Ellen sent Wendy a charm bracelet made of orange and clear beads. It has a Leukemia ribbon hanging from it. Wendy wears it all the time now.
Thank you Ellen!
Also, last Tuesday the Phlebotomist apparently infiltrated the vein in my arm. That's when you poke the needle all the way through. I have a massive bruise now. Thank you for this gift.
Tuesday, July 15, 2008
Low White Count
We went to Dr. Cohen's office for a short visit today. Mainly just a blood check up to see how things were going.
My White Cell count is 3,900. Normal range is 4,000 to 10,900. When we visited Dr. Coutre on July 1st, he said that sometimes this happens. When it does you get off the Gleevec until it comes back up to normal, then resume the regular dosage (400mg, what I take now).
Since we'll see Coutre on the 21st we'll ask about what do to with a low count.
My White Cell count is 3,900. Normal range is 4,000 to 10,900. When we visited Dr. Coutre on July 1st, he said that sometimes this happens. When it does you get off the Gleevec until it comes back up to normal, then resume the regular dosage (400mg, what I take now).
Since we'll see Coutre on the 21st we'll ask about what do to with a low count.
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