The Difference A Year Makes

Wendy and I made the trip up to Lake Alamanor for the Fourth of July holiday weekend again this year to go camping with my family. Last year I had the unfortunate duty of informing my family that I had been diagnosed with cancer. After breaking the news last year I said that my goal was to get together again the next year for "Remission Party".

While I'll never get to have a remission party, we had the next best thing. I'm doing fabulously on Gleevec and my PCR results have come back twice in a row as "barely detectable". I'm not sure if this qualifies as PCRU (no detectable leukemia cells) but I'll take it. In addition to that I'm really enjoying my new job even though the demands are much higher than my previous position. I've finally beaten the remaining causes of my fatigue into submission and have almost as much energy as I did before I was diagnosed. I have a ways to go before I'm back in shape again, but I've got the energy to actually attempt getting into shape again.

Friday night we all gathered in the same campsite we had last year and sat around the exact same table where 365 days earlier I'd told them all I had cancer. This year I started out the conversation exactly the same:

"Anyone have any announcements they'd like to make?"

There were a couple of uncomfortable laughs and a couple jesting remarks about that "not being cool." But I was serious. I had news to share this year almost as momentus as the news last year. And given the news last year, perhaps more momentus.

Wendy is due December 31.

After 2 years of trying, cancer, 3 miscarriages and 4 months of being told we would not be able to have children in the "normal way" we're going to be parents. Wendy is 14 weeks pregnant as of July 4th and so far (knock on wood) the baby is growing, healthy, and progressing perfectly. We've had 5 ultrasounds, 3 dopplers and a CVS test in those 14 weeks. We're afraid to get too excited for fear of having this ripped out from under us again, but with every passing week and every visit where the heart is still beating we allow ourselves to get a little more excited.

Recently we've gotten a little giddy walking through the baby section at Target and shopping for maternity clothes to fit Wendy's burgeoning belly (she's actually starting to show a little bit!). We cherish every "morning sick" moment, every emotional outburst and every sleepy afternoon. We feel so fortunate to finally have a pregnancy that might make it.

So what difference does a year make? In our case, it's made all the difference. We can't wait till the next Fourth of July, where hopefully, we'll be celebrating with our first child.

Cancer Will Not Take This From Me

Having special health needs like cancer complicates decisions like deciding whether or not to change jobs. Will the new job understand that you'll need extra time for medical appointments? Will they be able to accommodate dips in health and stamina? Will health coverage transfer seamlessly?

Recently, a great career opportunity dropped into my lap out of nowhere. The timing could have been better. I was unsure of whether or how quickly the sleeping remedies would work. I was having trouble lasting a full work day let alone a full work week and even when I was working I was certainly not at my full "operating capacity".

I could play it safe and stay where I was, with a good deal of history, support and understanding for my current condition but with no real opportunity for advancement or growth, or I could change jobs where much more would be expected of me but the opportunities for growth and advancement are very good.

It took a good deal of contemplation but I resolved that cancer will not take this away from me. I will not let this disease rob me of such an opportunity. So I decided to take a risk and accepted a new position as a lead developer at a small online auction company.

It's been almost 3 weeks since I started my new job and I'm loving it. In addition to being a good career move I've discovered a few positive aspects that I hadn't anticipated:

• No one but my immediate boss knows I have cancer. I worried that people would not understand my condition and I wouldn't be cut any slack. However, it's turned out that not being cut any slack has caused me to expect more from myself. I think I was letting myself get a little lax by allowing those around me to set my expectations for me. Not having that excuse has improved my drive, my stamina and my motivation.
• Since no one knows I have cancer, work is now a place where I can escape from awkward questions and interactions. People don't worry about what they say around me and vice versa. This is one time where not having any outward signs of leukemia definitely works to my advantage.
• I feel more normal because people expect me to be normal. This is slightly contrary to my first point since I'm essentially still letting others set my expectations for me, this is just a positive spin on the same theme.

Some of this is due to the fact that my improved sleeping habits mean I'm no longer slightly drunk with fatigue, and some of the improvement is simply due to the change in scenery. All put together though, it's one more step away from being "the guy with cancer" and one step closer to just being "the guy" again.

And it's one thing that I did not let cancer take away from me.

Passive Solar Collection

Who would have thought 30 minutes of sun a day could make such a dramatic difference? 3 weeks ago I hadn't slept through a night, been to bed before 5 o'clock in the morning, had any energy, or felt anything other than hungover for months. I think my brain had actually slowed to a crawl.

After 1 week of 30 minutes of sun every morning and the help of a CPAP machine, I now get up without any real problem at 7 a.m. every morning and I'm at work before 9. I have tons of energy, I've started exercising again and I'm starting to feel like I did before I was diagnosed with cancer.

Yesterday I got a postcard in the mail that had two obese men in speedos on the front laying out in the sun. It was titled "Passive Solar Collectors". My mom saw it at a stationary store and thought of me. Thanks for the mostly naked fat men mom... :-)

HemaTrack

I've been updating the software I wrote that generates the graphs on my Cancer Stats Page. It's now a full fledged blood test result tracking package.

I named it "HemaTrack" because I'm not very clever. You can download it at http://www.lycono.com/hematrack. Hopefully if someone else is as obsessed with lists and graphs as I am it might be of use to them. It's free to use and does not contain any advertisements.

Suggestions, feedback and criticisms most welcome.

Cans On A Fence

I've been tracking down and eliminating potential causes for my ongoing fatigue. After my last two glucose readings came in low from tests at Stanford I saw my GP and he agreed to run a glucose tolerance test as well as check my AM and PM cortisol levels. Both checked out within normal ranges, which means I'm not hypoglycemic (the opposite of diabetic). At least I won't have to watch what I eat like a Hollywood starlet.

The tolerance test turned out to be located somewhere just south of "fun". I fasted for 12 hours then drank a bottle of nasty sugar water (who knew sugar water could taste nasty?). Then I proceeded to sit in the doctor's office for 5 hours getting my blood drawn every hour. Luckily my veins held up quite nicely and they didn't have to stick me anywhere other than my arms. It turns out I would make an excellent intravenous drug addict!

My sleep quality and schedule is another potential cause for the ongoing fatigue. Since I was diagnosed I haven't been sleeping regularly or well. It has gotten progressively worse and for the past couple of months I've been unable to fall asleep before 5 or 6 AM. Various drugs were of no help and my pathetic attempt to adjust my schedule fizzled out after day four of trying to get up an hour earlier everyday. I started on a Monday and by Thursday was running on a grand total of 7 hours of sleep. So I gave up.

I made an appointment with Dr. Angela Anagnos who specializes in sleep disorders. I completed a sleep study 2 weeks ago that had to be scheduled during the day in order for me to actually sleep during the study. I showed up at 9am and was ushered into a room with a bed (that's the actual room and bed where I slept) where dozens of wires were attached to my scalp, face, chest, arms and legs with what seemed like the kind of paste you used to eat in grade school. Two sensors were stuck up my nose (very similar to a nasal oxygen tube) and two bands were strapped around my chest. The "hook-up" took about an hour to complete after which I promptly passed out and slept till 4pm.

During the followup the next week I learned that I had some "pre-seizure" brain activity (though no actual seizures, which I'm guessing is normal since she didn't seem concerned about it), a wildly ranging heartbeat (anywhere from 30bpm to 190bpm), mild snoring, and mild to moderate sleep apnea. None of these seemed to concern her very much. One that did was the amount of deep sleep that I got. According to her, most people are in deep sleep about 20% of the time. I got .2% deep sleep (the period is not a typo, that's less than one percent).

So I'm scheduled to go back in this Friday from 9am to 4pm again for another study where I'll be hooked up to a CPAP machine to determine whether "fixing" the sleep apnea will allow me to get more "deep sleep".

On a side note, the followup was absolute fascinating. All the data collected from the sleep study is distilled into graphs and charts of all kinds. It was great fun to go over them with Dr. Anagnos and see my sleep habits distilled into the various diagrams and charts. Did I mention I love numbers?

If all of this sounds dull and boring, you're absolutely right. In fact, if you've made it this far into this post I applaud you for your diligence. No one gives a rat's ass about any of this detail except me.

I have a reason for posting this though and it has to do with yet another lesson I've learned from cancer: It's okay to try and take care of yourself. (If you watch Southpark at all, this is the point in show where one of the boys says "You know, I learned something today".) Before I was diagnosed I'll estimate that I saw a doctor about 10 times in my entire adult life for things other than a required physical or checkup. Before cancer I would never have even entertained the idea of requesting a glucose test or a sleep study. I would have thought I was just being a hypochondriac and that if a doctor didn't tell me to do it, it must not be necessary.

Now I'm chasing down symptoms and causes for fatigue and knocking them off one by one like cans on a fence. And I don't give a shit if someone thinks I'm a hypochondriac or that I'm a "difficult patient" or complainer (monikers people with chronic conditions are sometimes tagged with). If there is something out there that might help me to not feel so tired, I'm going to find it. If I have to go through 20 tests that show nothing before I find one that does, so be it.

It's okay to try and take care of myself.