Friday, August 29, 2008

On the DL

I've submitted my paperwork for disability to the State of California's EDD office. This means (as long as my claim is not denied) that I'm officially on disability as of mid August.

With the place my head has been in along with the chronic fatigue, nausea and pain, I haven't been able to work full time for quite a while now. In addition, unless I'm having a really good day, I'm still hesitant to get behind the wheel of a car due to the vertigo and dizziness that I'm still experiencing.

I wanted to work part time but the state doesn't make it easy to do that while receiving disability payments. So, I'm off work full time.

In addition my co-workers have been informed that I'm taking a leave of absence due to a "chronic medical condition" (I love euphemisms). Letting the cat out of the bag is good, so to speak, since I think most people at work had begun to suspect that I had decided to leave the company for another job. I've no intention of doing that. Hopefully I'll be back to work in the near future.

One of my aunts made the trek down to our little hick town and took me to lunch today. We had bbq at my current favorite, the Trail Dust here in town. She also brought homemade lasagna and salad with her that Wendy and I could heat later for dinner. It was DELICIOUS.

I can't express how grateful I am for all the thoughtful gestures that have been made by my friends and family. It's comforting to know that they are there for me when I need them.

Wednesday, August 27, 2008

Benevolent Insurance?

I was visited by a Registered Nurse this morning. She works for my insurance company in a program for patients with complex medical treatment needs. When she first called me last week I didn't return her call because I figured it was an insurance company employee whose goal was to somehow reduce my benefits.

I figured it would work something like a car insurance adjuster. If you get in an accident they interview you, look at your vehicle and then try to find any loophole that eliminates their need to actually pay you.

My paranoia turned out to be for naught. She was a very nice lady who took my medical history and made sure that my medical needs were being met with my current treatment. She had done a fair amount of research on my condition and even brought some websites to my attention that I hadn't yet found.

She says she'll be calling me about once a week to check in and make sure everything is okay. I must say, I'm a little surprised by this serendipitous benefit from my insurance company.

On a separate note, I've had two good days in a row with fatigue and back pain being the only real issues. It feels as if I've worked a full day digging ditches almost every day now. Advil helps when I can take it. I'm worried about it's effect on my liver if I take too much though (like a normal dose).

I tried 15 minutes of yoga yesterday and it kicked my butt. I can't believe some of the positions they consider "beginner". In one, I'm supposed to put my head on my shin with my legs stretched out straight. I can barely get my hands there.

Saturday, August 23, 2008

3rd Time Is A Charm

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.

Wednesday, August 20, 2008


Rest in peace Adrian....

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.

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.

Sunday, August 17, 2008


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've been on the couch for three days now. I was supposed to work Friday but was too tired and had vertigo pretty bad. Saturday was worse. I had the spins and couldn't stand upright for more than a few minutes. Today was worse still. I was lightheaded, had vertigo and felt very weak.

Yesterday I tried Dramamine a couple times. The vertigo and "light head" feel a lot like car sickness. I think it helped some. The downside is Dramamine still makes the fatigue a lot worse.

I'm pretty sure that I was dehydrated today. Thinking back to yesterday I used the restroom about 10-15 times, 3 times just last night. Today was about the same. It's only 7pm and I think I've peed about 8 times. I drank three glasses of water and feel quite a bit better now.

I'm hoping that the vertigo and "light head" go away over the next couple of months. I'm hesitant to drive unless I'm having a really good day, and so far those don't happen very often. Wendy goes back to work tomorrow which means my beautiful chauffeur won't be available any more. I'm a little bummed about that. At least all the time I've been spending on the couch since this started hasn't been alone. If I see one more "Law & Order" rerun, I may scream....

Tuesday, August 12, 2008

Changing Horses and a Good Score

We went to Stanford this morning for my first blood test after resuming the Gleevec 2 weeks ago. I am happy to report that it was my first "normal" blood count since this whole pile of shenanigans began. My white cell count is now 4,400, my hemoglobin is 14.5 and my neutrophils are at 63.7% This is excellent news. It means that my response to treatment is headed in the right direction.

My next checkup is in 6 weeks when they'll do a standard CBC blood test just to make sure things are still on track. After that, they'll do a more in depth test in December to determine whether I've achieved a cytogenetic response (no leukemic cells in the blood). If I understand correctly, this will be a FISH test, hopefully without another bone marrow biopsy. From everything I've read, the average length of time to achieve a cytogentic response is 12-18 months. December will only be 6 months from diagnosis, but we're still hopeful.

We've also decided to stick with Stanford as my primary oncology care provider. Dr. Coutre appears to be a specialist in CML and Gleevec and we kept getting bounced back to him anyway with questions that my original oncologist couldn't answer. The minor downside is the size of the Stanford clinic compared to Dr. Cohen's private practice. It was nice to be on a first name basis with the office personal and have blood test results in 10 minutes. At Stanford the blood results usually take about an hour to come back and you see a different hematology fellow each time you're in the clinic. In all, I think it's a good trade, at least until things stabilize and my treatment goes into "maintanence mode".

In miscellaneous news I got a prescription for Compazine today for the nausea I'm experiencing as a side effect of Gleevec. Ativan didn't work, Dramamine put me to sleep and Jolly Ranchers only get you so far. Wendy and I joked today that most of the medication I'm currently taking is to counteract the side effects of other medication. I take Gleevec which makes me nauseous and gives me bone pain. So I take Advil to help the bone pain but that makes the nausea worse. Than I need to take an antiemetic to help with the nausea. Who knows, maybe I'll get another prescription for some side effect of the Compazine (assuming it works). I read that it can cause seizures, maybe I'll get an anticonvulsant for that....

Monday, August 11, 2008

A Good Day

Today is the first day I've felt "normal" in over a week. No bone pain, no nausea, no vertigo, and I actually felt energetic (I didn't get out of bed till 11am, but we'll let that slide for now). It was fantastic!

I went to work today and actually did some work. This evening Wendy, Leu and I walked downtown and enjoyed the wonderful weather and tasty salmon tacos on the patio at Rosy's on the Beach.

Tomorrow morning it's off to Stanford. I need a checkup to see how my blood is doing now that I'm back on the Gleevec.

In addition to my own personally fabulous day, I found a news article about research being done in Australia that has made some advances in targeted therapies for blood cancers. I love science... :-)

Sunday, August 10, 2008

Family Support

My brother Todd had orange wristbands made that read "FCML" (you can guess what the "F" stands for). Each person in my family is wearing one for me.

In the photo (starting from the chubby leg and moving clockwise) are my nephew Cole, my dad, my brother Todd, my brother Ryan, my mom, Cancer Dog, myself, my wife Wendy and my sister-in-law Ellen.

We visited my family this weekend because, well, I just wanted to be close to my family. On the drive up Thursday evening I was very sick. I tried Dramamine as a nausea remedy but it put me to sleep in about 20 minutes, so I'm not sure whether or not it worked. The bone pain was back on Saturday and I took 3 Advil. It helped but made me so sick I spent the rest of the evening on the couch sucking Jolly Ranchers.

I've received several sympathy cards in the mail from my family and a few friends of family (including my pre-school teacher, you have to love growing up in a small town...). It's comforting knowing that people are thinking about me and I can't express how much a simple gesture such as a card means to Wendy and I.

Monday, August 4, 2008

Road Trip!

Wendy and I drove out to Montrose, Colorado on 7/25/08. We left at 5am with the dog and made it to Montrose at 11pm. For the first 3 hours Leu whined uncontrollably, I think he was nervous. In Baker, he finally flushed some bad mojo out of his system and seemed better after that. It's a good thing since we were contemplating leaving him on the side of the road if he didn't shut up... :-)

We spent the first few days at Wendy's parents just relaxing. A short day trip to Ouray was pretty much the only outing. The rest of the time we visited with family and played with the dogs.

On Monday my blood was expertly drawn by Alicia at Montrose Hospital. A couple hours later we had the results. My neutrophil count is back up in the normal range. My overall white cell count is still low though at 3,600. That afternoon we drove over to Wendy's brother's house in Fort Collins. We took highway 285 (through Park County, home of the infamous South Park) for the scenery instead of highway 70 through Vail. To celebrate my last night off Gleevec for the foreseeable future, we got tanked. I picked up some wine and some Odell 90 Shilling and we proceeded to drink ourselves under the table.

Needless to say, Tuesday was spent sleeping and eating and not much else. We had Big City Burrito for lunch (possibly the best burrito I've ever had). I'm officially back on the Gleevec as of tonight.

Wednesday we played on Horsetooth reservoir, just outside Fort Collins with Jeremy and his boat. I barefooted for the first time ever!

Back in Montrose on Friday we went Jeeping with my father and mother-in-law to Yankee Boy Basin (the pictures at this link are from someone elses trip) behind Sneffels mountain. It was a great ride with some amazing scenery. It's the closest thing I've seen to the Swiss Berner Oberland in the United States. Here's a shot of me at in at the end of the jeep trail posing as if I'd done anything other just ride in the jeep.

And here are Wendy and I after being bumped around for 2 hours in my father-in-law's Rubicon.

On Friday night I began to feel the familiar fatigue, nausea, light-headedness and dizzyness from the Gleevec. Saturday I spent entirely on my in-law's couch. I had forgotten how crappy I feel on this drug. We had originally planned on returning home on Saturday but decided to stay an extra day since I was in no shape to travel.

Sunday and Monday we made our way back across the Western United States to good old California. Wendy did all the driving except for 1 hour on Monday. I was too out of it to be safely behind the wheel.