We've scheduled a "3rd opinion" with Dr. Druker at the Oregon Health & Science University Cancer Institute for Thursday October 30, 2008. The first available appointment was October 23rd, but that's my birthday and I refuse to be in a cancer center on my birthday. Apparently he's one of the leading authorities on CML and Gleevec in the United States. Our main goal for the visit is to get some concrete information on conception while I'm on the Gleevec. It'll be nice to get another opinion on the course of my treatment as well.
I've invited my parents to accompany us on this trip. Hopefully it'll be a positive way to get them involved.
The catalyst for this visit was an email from Jon Gershon, a CML patient from Rhode Island. Even living all the way across the country, Jon uses Dr. Druker as his primary oncologist. He highly recommended a visit based on his experiences.
One of the positive things I found after being diagnosed with cancer was all the support from people who are also going through it, or have already gone through it and come out the other side for better or worse. Both cancer patients and the loved ones of cancer patients seem to have no shortage of love, support and advice to offer.
When I started riding motorcycles I found that most riders feel like they are all part of the same club. Everyone waves to passing riders, we all watch for police for each other (if you've ever seen a rider patting the top of his helmet, he's indicating to other riders to watch for police) and everyone seems to look out for everyone else in general. It's a fun club to belong to.
Cancer is kind of like that. All the members of the club try to provide support and advice to other members. There are get-togethers, special priveleges and we even have our own colors. The difference is being in the cancer club sucks and you'll do anything to get out of it.
Saturday, August 23, 2008
Wednesday, August 20, 2008
Continuing Ugh
It's been 6 days now since I've been off the couch. The vertigo, dizziness and nausea have made it such that I don't last long sitting upright let alone standing. I don't feel safe driving either, changes in direction cause me to experience vertigo and get a bit disoriented.
I went to the doctor Monday because it felt like my kidneys were going to explode. I didn't sleep at all Sunday night because the pain was so bad. I watched the sun come up and called Stanford as soon as they opened at 8am. They suggested I see my GP, so I got an appointment with him at 11:30am. Wendy left work to drive me up where the doctor drew blood and some other fluid as well as poking and prodding me. All the labs came back normal. At least that meant I could take Advil to tide me over. My only guess is that it is a pretty severe muscle cramp. It's not as bad today but still annoying.
I'm getting sick and tired of feeling sick and tired. I feel useless. I haven't worked, haven't shopped, haven't walked the dog, haven't even really been out of the house. It takes most of my energy and willpower just to get out of bed in the morning. I've been reading other CML survivor experiences and it seems that Gleevec wreaks havoc on you for about 6 months before things even out and you start to feel normal again.
Since Wendy is no longer pregnant, we'd planned on hiking, camping and boating a lot this summer. That hasn't exactly worked out. We've been out once on the boat since July 4th and I can barely make it around the block right now let alone do a hike.
On a much more positive note, Wendy and I have received several cards in the mail that have made our day. One of them told jokes and one of them sang to us. It's so nice to know that people are thinking about us. In addition, my mother-in-law sent us two yoga mats and a yoga DVD from Gaiam. I can't wait to feel good enough to try and fold myself into a pretzel.
The father of one of my best friends from high school happened to be passing through town this morning and I drug myself out of bed "early" (9am) to have breakfast with him and his wife. It was great catching up, I haven't spoken with him or my friend in over 8 years. He had several pictures of his son's wife and new child. They looked very happy in the pictures. I couldn't help but be a little jealous.
I went to the doctor Monday because it felt like my kidneys were going to explode. I didn't sleep at all Sunday night because the pain was so bad. I watched the sun come up and called Stanford as soon as they opened at 8am. They suggested I see my GP, so I got an appointment with him at 11:30am. Wendy left work to drive me up where the doctor drew blood and some other fluid as well as poking and prodding me. All the labs came back normal. At least that meant I could take Advil to tide me over. My only guess is that it is a pretty severe muscle cramp. It's not as bad today but still annoying.
I'm getting sick and tired of feeling sick and tired. I feel useless. I haven't worked, haven't shopped, haven't walked the dog, haven't even really been out of the house. It takes most of my energy and willpower just to get out of bed in the morning. I've been reading other CML survivor experiences and it seems that Gleevec wreaks havoc on you for about 6 months before things even out and you start to feel normal again.
Since Wendy is no longer pregnant, we'd planned on hiking, camping and boating a lot this summer. That hasn't exactly worked out. We've been out once on the boat since July 4th and I can barely make it around the block right now let alone do a hike.
On a much more positive note, Wendy and I have received several cards in the mail that have made our day. One of them told jokes and one of them sang to us. It's so nice to know that people are thinking about us. In addition, my mother-in-law sent us two yoga mats and a yoga DVD from Gaiam. I can't wait to feel good enough to try and fold myself into a pretzel.
The father of one of my best friends from high school happened to be passing through town this morning and I drug myself out of bed "early" (9am) to have breakfast with him and his wife. It was great catching up, I haven't spoken with him or my friend in over 8 years. He had several pictures of his son's wife and new child. They looked very happy in the pictures. I couldn't help but be a little jealous.
Now What?
Wendy and I went to the Fertility Physicians of Northern California (FPNC) clinic on Monday. We wanted them to help formulate a plan that we could follow once I could donate "genetic material". We met with the very thorough, very patient, Dr. Nelson who spoke to us at length about our options.
If I haven't written about it already, the current plan (formulated by the Standford Cancer Center) was to wait until I get into Cytogenetic Remission and stop Gleevec for one month. We would wait for the first two weeks, then donate several "samples" over the remaining two weeks. The idea here is that the Gleevec would be flushed fom my system after two weeks so the donations should be free of the drug. These donations could then be used for artificial insemimation or, worst case, IVF. The average length of time it takes a CML patient to achieve Cytogenetic Remission is 12-18 months. They agreed to test me after 6 months this coming December.
Within the first 15 minutes of our discussion with Dr. Nelson, this plan essentially got flushed down the toilet. According to him, it take 2.5-3 months for a male to generate new sperm. This means that waiting two weeks would, in his opinion, be meaningless. As far as I am aware, being off Gleevec for 3 months is not an option. It's too large of a gamble that you will be resistant when you restart.
This means that we basically have two options now. The first is to roll the dice and conceive while I'm still on the Gleevec. The second is explore options such as donor sperm and adoption.
I can't help but be extremely angry and frustrated that we were told nothing of this before I started Gleevec. I was diagnosed in the chronic phase and waiting 3 or 4 days before starting Gleevec to allow time to bank sperm would have made no difference in the course of my treatment.
We haven't yet decided which direction we're going to go yet. If we decide to conceive while on the Gleevec and the baby has a birth defect, wouldn't that essentially be my fault? If we obeyed the doctor's advice not to get pregnant we wouldn't have condemned a child to life with a disability. On the other hand, we can find no credible study or evidence that conceiving while a male is taking Gleevec has a statistically significant chance of causing birth defects in the child.
It's not a decision I relish, and one that we shouldn't have to make. I'm thinking about making fertility awareness in new oncology patients my "cause". I think it makes sense to educate a newly diagnosed patient about their fertility options with regards to the consequences of their treatment. In some cases, there won't be an option. Sometimes the physician has to act quickly and decisively in order to save the patient's life. There is no time to stop and consider the future of a couple's fertility. This wasn't the case with me.
Wendy and I have a lot to talk about.
If I haven't written about it already, the current plan (formulated by the Standford Cancer Center) was to wait until I get into Cytogenetic Remission and stop Gleevec for one month. We would wait for the first two weeks, then donate several "samples" over the remaining two weeks. The idea here is that the Gleevec would be flushed fom my system after two weeks so the donations should be free of the drug. These donations could then be used for artificial insemimation or, worst case, IVF. The average length of time it takes a CML patient to achieve Cytogenetic Remission is 12-18 months. They agreed to test me after 6 months this coming December.
Within the first 15 minutes of our discussion with Dr. Nelson, this plan essentially got flushed down the toilet. According to him, it take 2.5-3 months for a male to generate new sperm. This means that waiting two weeks would, in his opinion, be meaningless. As far as I am aware, being off Gleevec for 3 months is not an option. It's too large of a gamble that you will be resistant when you restart.
This means that we basically have two options now. The first is to roll the dice and conceive while I'm still on the Gleevec. The second is explore options such as donor sperm and adoption.
I can't help but be extremely angry and frustrated that we were told nothing of this before I started Gleevec. I was diagnosed in the chronic phase and waiting 3 or 4 days before starting Gleevec to allow time to bank sperm would have made no difference in the course of my treatment.
We haven't yet decided which direction we're going to go yet. If we decide to conceive while on the Gleevec and the baby has a birth defect, wouldn't that essentially be my fault? If we obeyed the doctor's advice not to get pregnant we wouldn't have condemned a child to life with a disability. On the other hand, we can find no credible study or evidence that conceiving while a male is taking Gleevec has a statistically significant chance of causing birth defects in the child.
It's not a decision I relish, and one that we shouldn't have to make. I'm thinking about making fertility awareness in new oncology patients my "cause". I think it makes sense to educate a newly diagnosed patient about their fertility options with regards to the consequences of their treatment. In some cases, there won't be an option. Sometimes the physician has to act quickly and decisively in order to save the patient's life. There is no time to stop and consider the future of a couple's fertility. This wasn't the case with me.
Wendy and I have a lot to talk about.
Sunday, August 17, 2008
Lucky?
It's hard to feel lucky when you have cancer, but tonight, I do.
I consider myself "saved" in some ways by my GP. If he hadn't ordered a blood test when he did, who knows how long it would have been before the leukemia had been caught? Instead of catching it in what appears to be the early chronic phase it could have progressed to the accelerated phase... or worse.
A good friend of mine lost his father-in-law to CML just last year. His leukemia was caught because he became so ill, and his spleen so enlarged, that he was airlifted to a major hospital. He succumbed to the disease a few short years later.
I've been occupying myself by reading blogs written by other people with CML. It's strange how eerily similar the stories can be in some cases and how divergent they can be in others.
This poor lady is going through the agony of watching her adult son battle CML. Luckily, her son is responding well to Gleevec. Reading through her blog I couldn't help but think of my own mother. I wouldn't wish her pain on anyone.
This young man from England isn't fairing so well. He was diagnosed with AML early in 2007. AML is the acute form of my cancer. Prognosis isn't good for those unfortunate souls that have it. Worse still, one month later he was diagnosed with CML in addition to his AML. To his knowledge, he's the only one in the world with both types. His name is Adrian and he is currently waiting to die. About 1 month ago he was given a few weeks to live. Reading what he has gone through makes me appreciate the relative innocuousness of my cancer.
It makes me a little angry to read or hear that I have the "good" cancer. To me it sounds ignorant and obtuse. There is no such thing as a "good" cancer. And yet, I wouldn't think twice about describing Adrian's situation as "worse". I guess if his can be "worse", then mine can be "good". Everything is relative, and I think I understand now what people mean when they say CML is the "good" cancer. I get to be at home with my wife, take a pill every night and go about my life as best as my fatigued, lightheaded, couch-riding ass can.
I'm worried that my athletic days are over and I'm deathly afraid that I won't get to have children and grow old with my wife. But I have that chance, and it's a good chance.
Fuck that, a very good chance.
I consider myself "saved" in some ways by my GP. If he hadn't ordered a blood test when he did, who knows how long it would have been before the leukemia had been caught? Instead of catching it in what appears to be the early chronic phase it could have progressed to the accelerated phase... or worse.
A good friend of mine lost his father-in-law to CML just last year. His leukemia was caught because he became so ill, and his spleen so enlarged, that he was airlifted to a major hospital. He succumbed to the disease a few short years later.
I've been occupying myself by reading blogs written by other people with CML. It's strange how eerily similar the stories can be in some cases and how divergent they can be in others.
This poor lady is going through the agony of watching her adult son battle CML. Luckily, her son is responding well to Gleevec. Reading through her blog I couldn't help but think of my own mother. I wouldn't wish her pain on anyone.
This young man from England isn't fairing so well. He was diagnosed with AML early in 2007. AML is the acute form of my cancer. Prognosis isn't good for those unfortunate souls that have it. Worse still, one month later he was diagnosed with CML in addition to his AML. To his knowledge, he's the only one in the world with both types. His name is Adrian and he is currently waiting to die. About 1 month ago he was given a few weeks to live. Reading what he has gone through makes me appreciate the relative innocuousness of my cancer.
It makes me a little angry to read or hear that I have the "good" cancer. To me it sounds ignorant and obtuse. There is no such thing as a "good" cancer. And yet, I wouldn't think twice about describing Adrian's situation as "worse". I guess if his can be "worse", then mine can be "good". Everything is relative, and I think I understand now what people mean when they say CML is the "good" cancer. I get to be at home with my wife, take a pill every night and go about my life as best as my fatigued, lightheaded, couch-riding ass can.
I'm worried that my athletic days are over and I'm deathly afraid that I won't get to have children and grow old with my wife. But I have that chance, and it's a good chance.
Fuck that, a very good chance.
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