My Blood Hates Me

A Beginning, A Middle, And An End

2010-04-07T21:51:00.000-07:00

Every story has a beginning a middle and an end. Some stories have multiple volumes or chapters. The chapter of my life that was ruled by CML is at it's end. I still have cancer in my bone marrow, but I'm moving on.

In the beginning I was angry, confused and depressed. Asking how and why this happened to me. Desperately searching for the light of reason in the chaos. I was on disability for 5 months and spent 80% of that on the couch suffering the side effects of the drug that was keeping me alive. I was told it would be difficult or impossible to have children. I cried.

In the middle Wendy and I found out that we could indeed have children. The visits to Stanford for my checkups became less and less eventful. They even got boring. I went back to work part time, then changed companies and accepted a very challenging full time position. There were a couple of weeks here and there where I got so run down that I missed work. Then even those stopped happening. I posted less and less on this blog.

In the end, Wendy and I have a beautiful, healthy baby boy that brings a smile to my face every time I come home from work. I don't think about CML anymore. I've essentially stopped posting things on this blog because nothing interesting happens that's related to CML. My visits to Stanford come every 3 months. I see the hematologist for about 5 minutes. It's boring. I haven't missed work due to anything CML related in 4 months. My BCR-ABL has been stable at a "greater than three log reduction" for over one year.

And so I've moved on. This is the end of my CML chapter. Maybe someday another chapter will be written on this topic. I hope not, but I'm not worried. There is no use in wasting the time I have been given worrying about what may happen with the cancer I carry around inside of me. I grieve for the "cancer" friends I've lost, and I hope for the ones still struggling to find stability and normalcy.

I take my pill every night, and I live my life. There will be no more posts to this blog unless something outstanding happens related to CML, either for good or bad.

And so in the words of my favorite segment of Saturday Night Live: "Good night, and have a pleasant tomorrow".

I Think He's Stable Jim

2010-02-01T00:43:00.000-08:00

Finally got my PCR results back from Stanford last week. I'm still at a greater than 3 log reduction and holding. This means that my test results have been stable for about 1 year. There's no clinical meaning to that duration of time but it's a milestone for me.

(And a happy birthday to cancer dog by the way.)

Hello Dylan

2010-01-01T20:22:00.000-08:00

I am pleased, excited, elated and happy to let you know that Wendy gave birth on December 27, 2009 at 10:02pm to a perfect, beautiful little boy. He was 5 days early, weighed 8lbs 10oz and was 19.5 inches long. We named him Dylan Leonard.

Both Wendy and the baby are doing wonderful. My family has been in town for a couple of days visiting and sharing this most special time with us. I am still awed every time I hold him what a little miracle he is.

Last night we rang in the new year with our little boy, our first New Years Eve as a family. I'm overwhelmed with emotion just thinking about it. Tonight we're all sitting around my living room enjoying family. We're just so thankful.

Happy New Year!

(You can see more pictures here.)

What Is It With December?

2009-12-21T11:27:00.000-08:00

Last December my health care provide ran the wrong test and incorrectly told me I'd reached PCRU (the best you can hope for with CML on Gleevec). We didn't find out till 3 months later at our next appointment.

This December they forgot to run the test entirely. I waited two and a half weeks before calling them for results. When I got a hold of my hematologist's nurse she said that they hadn't drawn the blood for the PCR test. I could come in and have it done when I had time or "just wait till next time".

Are you fucking kidding me? "Next time" is three months away. That'll be six months since my last PCR test.

So I'll be heading in Tuesday morning (tomorrow) for another blood draw so they can run my PCR test.

Tis the season I suppose....

Two Sides, One Coin

2009-11-20T20:44:00.000-08:00

A lot of the blogs that I started reading when I was diagnosed don't have many new posts anymore. People's lives return to something close to "normal" or they die. In both cases, they stop posting.

For me things have gotten back to something resembling normal. I've been back at work full time for over 6 months, my side effects have subsided to the point where they're annoying and frustrating but I'm learning to live with them. I still get tired more easily than I used to, my digestive system is unpredictable at best and I'm pretty much always in some sort of discomfort from it, I'm 30 pounds heavier than I was when I was diagnosed and my muscles cramp up quite painfully all the time. All in all, not too bad given what I carry around inside my blood.

The same is not true for all with this cancer however. Over the past year I've corresponded with a woman whose son (roughly my age) was diagnosed with CML and subsequently failed Gleevec. He had a stem cell transplant and had passed his 100 day mark with flying colors.

Then I got an email last week that I will let speak for itself:

I am praying you are still doing well on your CML journey.  Sadly, I have to tell you that my beloved son, Robert*, passed away on Friday, Nov. 6.   Since I last emailed you, the sharp pains in his back turned out to be relapsed leukemia in his spine.  Sometime during chemo, the leukemic cells passed through the blood/brain barrier and formed chloromas.  In July, he was unable to have a bowel movement for 3 weeks.  We went to many doctors and they all told us there was no blockage and keep taking laxatives and painkillers.  We took him into the local ER on July 24 and after a CT scan they sent him home with more laxatives.  By the next morning, Robert could no longer walk or urinate.  We rushed him to the ER in Hackensack where he had his transplant and an MRI showed a leukemic tumor engulfing his spinal cord. He underwent surgery and radiation treatments.  He was only able to walk with a walker after that but he was determined that with PT he would walk again. But the pains started again in his back and the scans showed that the tumors had spread to his entire spine and he was radiated again.  He even underwent a donor leukocyte infusion (DLI), but there were still signs of white cell abnormalities.  Hackensack told us that they were out of options and suggested we head down to MD Anderson in Houston for an experimental drug trial.

We left here on Oct. 11 for Houston and in less than 4 weeks, he was gone. He never got into the trials.  When we met with Dr. Cortez, Robert was coughing and we were told it was due to radiation of his neck area.  But it turned out to be pneumonia and he was immediately put into the ICU there. He was also given a round of chemo which I questioned since he was so vulnerable at the time.  They tell us he had a drug reaction to an antibiotic and he got Steven Johnson Syndrome, actually TENS, as his body blistered over 90% inside and out.  He was transferred to a burn unit to dress his skin daily but the disease took everything from him.  He was on a breathing tube the final week of his life.  He was blinded, unable to speak, no mobility, just nothing.  It was a horrific death but he is at peace now, we are sure.  He was taken from us way too soon.

God bless you and Wendy.  My wish for you is to have many, many more happy NORMAL years.  Hopefully, soon there will be a cure for all cancers.

* I've changed the name at the request of his mother.

My heart goes out to his mother as well as his entire family. It's not fair and it's not right.

Are You Pregnant?

2009-10-06T17:09:00.000-07:00

I slipped out of work a couple of weeks ago to have a nice quiet lunch at Noah's over a Metro newspaper and enjoy the fabulous September weather we're having. I had just taken my first bite of sandwich when I noticed a woman enter in shorts, a t-shirt, a do rag and no hair anywhere on her face or head. She had a bandage on her arm where I'm assuming a picc line had just been removed or was hidden. She was obviously being treated for cancer.

I felt an immediate kinship with this woman whom I've never met before due to a disease that we had in common. I planned to wait for her to sit down so I could strike up a conversation with her. I was interested how her treatment was going and what kind of cancer she had. I wanted to connect with this person, to tell her good luck, to listen to her vent, and to enjoy a nice lunch with someone else who had cancer. I wanted to let her know that there are other's out there going about their lives, dealing with hardships similar to hers. Most of all, I just wanted to hear her story.

Alas, I never got that far. The more I thought about it, the less appropriate it seemed to approach a stranger in a restaurant, ask them if they had cancer and then ask them questions about it. The risk of putting my foot in my mouth was akin to inquiring if a woman was pregnant. What if the woman didn't have cancer after all? What if the last thing she wanted to do was talk about her treatment or disease with some random stranger? The more I thought about it, the more it seemed best not to approach her.

The feeling that settled over me and prevented me from approaching her was a combination of respect and fear. I did not want to risk causing this woman to focus on her cancer and potentially ruin an otherwise escapist meal. I wanted to respect her privacy despite her appearance making her cancer public and I feared potentially upsetting her.

I have the fortune (depending on your viewpoint) not to have any external signs that I have cancer. I've made it 4 months at my new job without any of my co-workers guessing that I have a medical condition, let alone cancer. I don't hide it (this blog is public and has my real name and picture attached to it), but I don't advertise it or offer information about it either. I find it a relief to shade my cancer in anonymity such that it's not the first thing that comes into someone's mind when we speak. I don't have to second guess people's expectations or evaluations of me, they expect from me what they would expect from a normal person. This woman did not have that luxury. She had no eyebrows and no hair. She was sporting the tell-tale "cancer hat". She couldn't hide her cancer if she wanted to and there was no way for her to get through a day without someone doing a double take as she passed due to her appearance.

But oh how badly I wanted to speak with her! I kept debating until she finally got up and went about her day, ambling off down the sidewalk with her companion. I'm now left with a feeling of loss for never having met this woman and experienced her story.

I would like to believe that people with cancer are in a club and we get some special privileges that others might not. We can broach topics that would be taboo for others because we've been there and done that. Despite the wildly varying treatments and procedures for cancer, we can at least sympathize with what a cancer patient is going through in ways that people who have never been through them cannot.

The reality is that each person deals with this differently. Some guard their privacy fiercely while others broadcast every trial and tribulation to anyone who will listen. You'll never know unless you ask, and this time I felt it best not to ask.

To the stranger at Noah's: I wish you all the luck possible with your treatment. There's someone out there that you don't know hoping that a positive outcome somehow finds you soon.

Beauty and the Bun

2009-09-05T18:40:00.000-07:00

I convinced Wendy to model for me in the backyard. She's really starting to show and I wanted to have some pictures of her in different stages of pregnancy.

Here she is at 24 weeks.

Wendy and our Gleevec baby.

Banal

2009-09-02T21:33:00.000-07:00

Wendy and were at Stanford yesterday for my quarterly checkup. We did the usual blood draw and then had a quick "drive-by" visit with the oncologist.

It was no big deal.

It's so strange how normal and banal this has all become. I used to fret for a week beforehand and wait on pins and needles for the PCR results to come back. Now it's just all part of life. I forgot about the appointment until last weekend and I didn't even take the whole day off work. My CBC and metabolic panels came back normal and I'm not worried about getting the PCR results back. I'm just assuming that it'll be a good result.

It's so strange how my attitude has changed in the last 5 months. My mindset is shifting from "this is something that will always be with me and I'll never be free of it" to "I've beaten this and I'm moving on". Thank you Gleevec!

On a distinctly non-mundane note, Wendy has grown quite a large belly! All the tests and ultrasounds show a normal, healthy baby. She's 23 weeks along and going strong! Our house is slowly starting to fill up with baby furniture, clothes, towels, strollers and all the other paraphernalia, brick-a-brack, contraptions and "essential items" that soon-to-be new parents blow their money on.

It's still a little hard to believe that this is really, honestly, finally happening but we're pretty much over the "too scared to get excited" hump and have fallen into giddy excitement and anticipation.

Here's to banality!

I'm In Newsweek!

2009-07-30T22:25:00.000-07:00

I hate tooting my own horn but I can't resist this. This blog has been mentioned in an article in Newsweek called "Real Funny People: Young Patients Laugh At Cancer". It's only a "web article" and won't appear in the print magazine, but cool none-the-less.

It's great to see young adult cancer patients getting some exposure in the media. We're often overlooked in favor of the very young or very old.

Northwest Cancer Convention 2009

2009-07-30T21:28:00.000-07:00

We recently returned from a wonderful trip to Seattle to visit our "cancer" friend Yanni and her "special friend" John**. She was diagnosed with CML in the fall of 2008, then with Lymphoma in the spring of 2009, and most recently with TIA (basically mini strokes). If anyone is qualified to say "I'm fucked" it's her.

We've gotten to know each other quite well over email, instant messaging and a brief meet up in San Francisco last winter. She's an extraordinary individual with the spirit of a fighter. She's always a delight to talk with, even when things are going poorly for her (which is pretty much the entire time I've known her).

We were treated by our gracious hosts to 3 fabulous days of pacific northwest culture and scenery. The highlight of our trip was something very simple but very special. On Friday we had a group lunch with 2 other individuals who also had CML. At one table, in the suburbs of Seattle, sat 4 cancer survivors. Each shared the common thread of cancer and yet each had a unique story.

Clockwise from front: Marissa, Yanni, Tyler, Hans,
Han's son, Han's mom, Matt, Wendy.

Tyler recently underwent a bone marrow transplant and is doing excellent. His friend Hans plays on the same soccer team and was diagnosed mere months after Tyler. Hans has failed Gleevec and is now on Sprycel. Yanni has been diagnosed with more illnesses than should be present in the population of a small town. And of course, you know Wendy and I. (For the record Marissa raised money with Team In Training and ran the Seattle Half Marathon. Thanks Marissa!)

We enjoyed a long lunch sharing stories about bone marrow biopsies, radiation, chemo-therapy, nurses, needles and doctors. We also talked about death and those we've lost to cancer. Much of the conversation was macabre, frank, open and blunt. It's so refreshing to be able to let down your guard, tell it like it is and not worry about how people will react or whether you'll make them uncomfortable. We joked that the waitress probably didn't even know what was going on. Even though the topics of discussion were heavy and necessarily dark you'd never have known by the laughter and smiles all around the table. After all, we're still here.

On Saturday we were treated to a whirl-wind tour of Washington. We did a little hiking around Mt. Rainier, drove out through Yakima and visited Leavenworth. Washington is indeed a beautiful place.

Matt and Wendy at Shadow Lake
in Mt. Ranier National Park.

We'd like to thank Yanni, John and Ryan for showing us such a wonderful time and being such gracious hosts. My toast to Yanni before we left: "I'm sorry I met you, but I'm glad I know you." In other words, if we didn't have cancer we never would have met, but I'm glad to have found such a good friend.

** Yanni could supply enough material for a reality show and soap opera. This is an inside joke that no one but Yanni, her family and John will get (or the paramedics in Snoqualmie, Washington) but I can't resist putting something up about it. Maybe in time she'll let me share the story of the paramedic visit to her house on Sunday the weekend we were there. You won't be disappointed.

The Difference A Year Makes

2009-07-13T20:59:00.000-07:00

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

2009-06-03T21:47:00.000-07:00

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

2009-05-20T21:34:00.001-07:00

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... :-)

Cans On A Fence

2009-04-21T21:55:00.000-07:00

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.

Charity

2009-04-01T00:36:00.001-07:00

Feel free to officially break out the champagne (or sparkling wine) to celebrate. I received a copy of my PCR results from the March 3 visit to Stanford and it says (and I quote) ">3 log reduction". And this time it says "CML" too. I checked with Dr. Coutre and he concurs that this means I've achieved a "major molecular response".

This means that there has been at least a 3 log reduction in the number of leukemic cells in my body but that they are still detectable. The next (and last level) of response would be a "complete molecular response" which means that no leukemic cells were detectable with a PCR test (you might also hear this called "PCRU" or "PCR Undetectable"). Obviously this has nothing to do with charity but I don't need an excuse to pass along good news... so there.

In other news Wendy and I have been trying to become more involved with the trainees for this season of Team In Training. We attended a pool tournament fund raiser where I took 3rd place! We had a great afternoon talking with Mark who put on the event. My personal thanks to Shoreline Billiards in Mountain View, CA for their generous donation of 5 tables. This Saturday we're attending the Team In Training "Honoree Picnic". This is an opportunity for the trainees to get to know the honorees and mingle. It should be fun.

If you're within range of the venerable KGO Talk Radio (my favorite talk radio station along with NPR) they are having their annual Leukemia and Lymphoma Cure-A-Thon April 3 and 4. All the money goes to benefit the Leukemia and Lymphoma Society. Consider listening in and maybe donating a little something.

Bring on Spring!

Boo Yah!

2009-03-13T19:19:00.000-07:00

My doctor left me a message today. He didn't leave exact numbers, but said my PCR test results came back with a greater than 3 log reduction and that leukemic cells were "barely detectable".

Can I get a "hell yeah!"?

I'm reserving a full on celebration until I can get a copy of the results and see for myself, but this is EXCELLENT news.

I went out and bought a bottle of wine to share with Wendy. We'll be toasting to our good fortune tonight!

Public Speaking

2009-03-12T21:42:00.001-07:00

I had the privilege of sharing my cancer story with the South Bay Team In Training group tonight at Los Gatos High School. I am an "honoree" this season. Honorees help connect the Team In Training participants to the cause that they are supporting. There are a handful of us that work with the South Bay group for the spring season.

Tonight after they finished running we gathered in front of the school and I spent about 5 minutes explaining how they had helped change the way that my cancer is treated. Before Gleevec I would have had a 4-5 year life expectancy and gone through chemo and radiation, along with a bone marrow transplant. With Gleevec I take a pill once a day. Though there are side effects that are bothersome, they are nothing in comparison to what my life would be like without it.

I'm not a terribly good speaker and I was actually a little nervous so I hope that my thank you to them came across as sincere and they have some small insight into how Team In Training has directly affected my life.

I really enjoy hanging out with the participants and leaders of Team In Training. Everyone is so enthusiastic and supportive. I can't wait till this fall when I attempt to actually run with them!

Ominous Violins

2009-03-03T21:34:00.000-08:00

You know how in movies and television a subtle, yet ominous violin foreshadows some critical turn in the plot? For instance, two girls are talking jovially on the steps of their college dorm about classes and homework when the conversation turns to the party last Friday night. In the background a soft, low violin begins to play a solitary, wavering note as the girl on the left explains that she had sex at that party and that she's pregnant now.

Violins played today during my quarterly visit to Stanford. Our chat with the med student that precedes the visit with the actual doctor went very well. He gathered information about the medications I'm taking, the current side effects and how I'm managing them.

Then my regular doctor comes in and looks a little rushed (it was probably 5pm by this time, our original appointment was at 3pm). We ask a couple of questions about where exactly I am in treatment, how things are going, etc. We get a little hung up on whether I'm considered to have had a complete cytogenetic response as I reported over Christmas.

(Violins begin playing....)

He says you really need a BMB to determine if you've achieved a complete cytogenetic response. We had always been under the impression that a clean FISH test was the same thing. Then (and here's the kicker) it doesn't really matter because the FISH test from December was botched. The numbers are meaningless.

Really??

Somewhere in the "chain of evidence" that lab orders and samples go through when they leave my arm, get processed at the lab and come back, the test was changed from CML markers to CLL markers. So it was a wasted test, though you'll be happy to know that I tested negative for CLL. (Did the sarcasm come through in that last statement? Good.) The doctor didn't figure this out till he looked at the result today during our visit. When he originally saw them back in December, he didn't get past the part of the report where it said "Negative".

At this point Wendy and I are a little dazed; stuck somewhere between magnanimity, malevolence, and dumbfounderment. People make mistakes, they're human. But this was really two mistakes: the test was botched and the fact that it was botched wasn't caught. How could something like this have happened?

The bottom line is that I haven't had anything but peripheral blood tests (CBC) since July of 2008. So we have absolutely no idea what kind of progress I've made at the cytogenetic (FISH) or molecular (PCR) level over the past 8 months. I might be in "remission", I might not. We don't know.

Remember the violin? It's still playing actually. We're not quite through the plot turns here.

My first PCR test was in June of 2008, it showed 5.45% leukemic cells. The second test was done in July and it reported .45. 5.45 => .45 is a one log reduction. As the doctor was explaining what "good" data we had and what we expect to see from today's PCR test he mentioned that it would be good to get from my current .45 log reduction to a 2 log reduction.

Wait, what?

It turns out that we had been misinterpreting the results from my past PCR tests. The first test reports the percent of leukemic cells, that would be 5.45%. All tests after that report the log reduction, NOT the percentage of leukemic cells. So the .45 on the test from July means that I've achieved a .45 log reduction, not that I have .45% leukemic cells.

So this morning I was here:

Clean peripheral blood.
2 log reduction.
Negative FISH test (complete cytogenetic response).
Essentially in remission.
Hoping for today's PCR test to show that all important last log reduction.
Happy and skippy.

After our appointment I was here:

Clean peripheral blood.
.45 log reduction.
Most recent data from 8 months ago.
Wondering if anyone got the license plate of the truck that just drove over me.

So now I have no idea where I'm at. We have to wait for the PCR results to come back (hopefully next week or the week after).

The bottom line is that we didn't get any bad news. We just had all the good news we'd been celebrating for the last few months completely invalidated. I feel like we're back to square 1 in a way. I had felt like we were solidly on our way to remission and a return to normal. Maybe we still are, but now I have no fucking clue again. It'll be a long 2 weeks waiting for those test results.

The Best Laid Plans of Mice and Men

2009-02-24T23:22:00.001-08:00

When Wendy and I decided to to start trying to have children, we had a very specific plan. It went something like this:

Visit Europe first (done, May/June 2007).
Time birth such that Wendy could take at least 6 months off of work.
Time birth to occur in October (our families have an unusually high number of births in October, we wanted to continue the trend).
Avoid a Christmas or New Years birth.

That was about 2 years ago. Oh how absurdly naive we were.... Then we lost a pregnancy. Then I got cancer. Then we lost another pregnancy. Then we "shouldn't have children" while I'm taking Gleevec. Then we could. Then we lost another pregnancy.

Now we just want a child. We don't care when it's birthday is, we don't care how the birth coincides with Wendy's work schedule and he or she will just have to make due if their birthday is close to Christmas or New Years. The only thing we were right about was getting a dream vacation out of the way before diving into all this. And I think I'd even go back and give that up if we could just get a pregnancy to stick.

As they say, "10 fingers and 10 toes", that's all we're asking for now.

For the curious, the title comes from the Robert Burns poem "To A Mouse". Though it's not exact, it's often quoted as "The best laid plans of mice and men often go awry".

New Swag!

2009-02-20T23:17:00.000-08:00

I created a couple of new t-shirts this month for Wendy, myself and a friend. You can see the new collection here. I wanted a shirt with my blog title in it and also wanted to give a shirt to Yanni when she visited. Her's is humorously R rated, so children beware. It's safe for work but not safe for those that are underage. (I've sprinkled more colorful language around this blog before, but just in case....)

Just so you know, I've put a $4 markup on each t-shirt. All proceeds will go directly to South Bay Team In Training.

I'm currently looking for a service that will print license plate frames that say "Save A Life" on top and "marrow.org" on the bottom. I'd love to stop advertising the dealership where I bought my truck and put that space to good use. More later when I get that worked out.

(As a side note, I'm done with cafepress, the service I was using to make t-shirts. They have some bogus restrictions that I couldn't get around without paying them money. I found another service called Printfection that's a lot more lenient and doesn't want to appropriate my hard earned money for no apparent reason.)

Yanni

2009-02-20T22:58:00.000-08:00

I've mentioned Yanni here a couple of times. She lives near Seattle and was diagnosed with CML in the fall of 2008. Unfortunately she was diagnosed in the advanced stage of the disease. Gleevec didn't work for her and the leukemic cells invaded her central nervous system (basically her spine and brain). I probably don't need to spell out how bad that is.

She's subsequently been through about half a dozen rounds of chemotherapy, a handful of thoracentesis procedures (to drain cancerous fluid from around her lung cavity) and more ups and downs than you can shake a stick at (although I'm sure she's tried, she's rather feisty). Currently, she's going through one more round of chemo in the hopes of avoiding a transplant or drug trial and going back on one of Gleevec, Tasigna or Sprycel. I deeply hope that she's able to go back on one of these drugs instead of heading down the transplant route.

We've gotten to know each other via email and instant messenger over the last couple of months. She's incredibly nice and thoroughly undeserving of her current predicament. This last weekend she was in good enough health to fly down to meet Wendy and I. We stayed overnight in Sausalito at the Casa Madrona hotel where we got to know each other a little better over dinner on Sunday night. We talked about treatments, about the future, and about how much this sucks. Monday morning we went traipsing around Sausalito checking out a few shops and having breakfast.

Unfortunately, I wasn't feeling very well at all on Monday, so Wendy and I went home in the early afternoon (I slept the entire way). It was a great visit and I'm very glad to have met her. I wish her the best in the coming months as the direction of her treatment becomes more clear.

As for me, I'm still plugging along. The nausea has come back in moderation and I feel like I'm getting progressively more tired. It's to the point now where I can't make it through a full work week. In fact this week I went to sleep early Thursday morning and woke up Friday late afternoon - almost 2 days. I'm working on getting more exercise in the hopes that the fatigue is related to that. We'll find how my blood is doing in a couple of weeks during our quarterly visit to Stanford.

Happy Birthday Cancer Dog

2009-01-26T01:32:00.000-08:00

January is Leu's birthday. He is one this month. I made cupcakes for Wendy (who was also born in January) and we decided to let Leu have one.

We learned 2 things doing this:

Leu is afraid of fire.
Leu loves cupcakes.

The first 2 weeks of work have been pretty good. Trying to figure out what's happened in the last 5 months has been slow going but I'm starting to get back into the swing of things. My co-workers threw me a "Welcome Back" lunch the second week. I was very touched.

My fatigue level is much better now than even a month ago. If I can get up and get going I do pretty good all day. As soon as I relax though, I crash. I slept all but 4 hours yesterday. Leu kept me company for some of those.

Wendy basically woke me up for meals, after which I would promptly fall right back asleep.

In the interest of full disclosure we haven't made any "tangible" progress on the baby front. We lost another very early pregnancy over the Christmas holiday. It lasted just long enough for us to get excited about it. That made the holiday a little bittersweet, celebrating the progress my treatment has made while trying not to feel kicked in the teeth by the loss of another pregnancy. We've still got our chins up and we're hopeful though. It'll happen.

My next appointment at Stanford will be March 3. Till then, it should be steady as she goes....

Back In Action

2009-01-13T11:41:00.000-08:00

I'm back at work as of yesterday. My company has very generously held my position while I was out. I'm lucky to work for such good folks. This should be a good change, I definitely need some structure in my life. A regular routine will do me good. I'm also hoping that some activity and socialization will help reduce the fatigue. Luckily my job has no set hours so I don't get too many frowns when I walk in at 11am. By next week I hope to have adjusted and be in at a regular time.

On a touchy feely note, the hardest part about going back to work has been leaving Cancer Dog at home by himself all day. After 5 months of non-stop, daily contact, I feel a little guilty leaving him alone and honestly, I miss him a little bit. I never thought I'd get so attached to an animal.

As things begin to return to normal for me I'm constantly reminded of how easily they can go awry. Sadly, Dawn passed away last week due to complications from her bone marrow transplant. She fought quite a battle and my heart goes out to Mike and her family.

I've also been talking with a young woman from Washington for a few months who was diagnosed with CML in the fall of 2008. She was doing well on Gleevec until they found leukemia cells in her Central Nervous System a couple of weeks ago. Gleevec doesn't work when the cancer invades the CNS. Consequently, she has been switched to Sprycel and will go through 3 rounds of radiation over the next month to kill the rogue cells. I'd never heard of CML invading the Central Nervous System. Apparently, that's why the doctor always asks me if I'm getting more headaches than usual.

These kinds of things remind me not to get complacent about my treatment and that it's important to continue supporting the causes that make that treatment possible.

New Years Resolutions

2009-01-07T23:57:00.000-08:00

If you haven' t made a new years resolution yet, or if you have but want to go for the gold, please consider making or adding the following to your resolution(s).

Join the National Marrow Donor Registry. There are people all over the country who need a transplant who will die this year because they can' t find a suitable bone marrow/stem cell match. Joining only takes a few minutes of your time and a few dollars. If you're cheap (like me) you can find a local bone marrow drive near you where the cost will be covered. (Light the Night is one such event.) If you can't find an event near you contact the Leukemia and Lymphoma Society and they should be able to find a way to help you. Wendy joined at a Light the Night walk this past summer.

You're under no obligation to actually donate even if you're registered. If, at some point, you are matched and do choose to donate however, you will literally have saved someone's life. Please, please, please register.
Donate blood, often or even just once. This helps a lot of hospitalized individuals, not just those with Leukemia or other types of cancer. People undergoing radiation or chemotherapy treatments are often in need of blood. Recently, Dawn's hospital almost ran out of her blood type and had to ration her transfusions. Donating blood costs you nothing and you usually get a cookie! You can contact the Red Cross or most any local hospital to find out how to donate.

These are really easy things to do that will directly impact someone else's life.

Happy New Year to you all.

A Merry Xmas Indeed!

2008-12-21T13:55:00.000-08:00

We visited Stanford on December 16th for my 6 week checkup with Dr. Coutre. The cancer center was the busiest I've ever seen it. We waited for almost 2 hours past our appointment time before we could see the doctor.

This turned out to be serendipitous when a lady named Beth came over and introduced herself. She recognized my face from pictures I've posted here. She follows this blog and we've commented back and forth a couple of times on the LLS forums. It was a genuine pleasure meeting her. We talked for around 45 minutes about treatment, CML, dealing with day to day life and Dr. Coutre. Beth was diagnosed the same week I was and so far is doing very well on Gleevec. I wish her good news when her test results come back from this visit.

The visit itself was very brief. We talked about what tests were being run (CBC, FISH, metabolic panel and electrolyte panel this time) and why. The metabolic panel shows whether my liver and kidneys are working correctly, the electrolyte panel shows the electrolyte contents and CO2 levels in my blood, and the FISH test shows how many cells are leukemic. If the FISH test shows less than 35% leukemic cells, it's called a Major Cytogenetic Response. If it shows 0% leukemic cells, it's called a Complete Cytogenetic Response, i.e. remission.

The CBC and panel results are always ready in time for your visit with the doctor. Things look good in general (the charts have been updated). My RBC is ever so slightly low, and CO2 was slightly elevated. It's nothing to worry about according to the doctors though.

The FISH test takes a little longer to process so we had to wait until Friday for a call from Coutre's nurse. The news was good:

I've achieved a Complete Cytogenetic Response!

That's right kiddies, my Xmas present this year is remission! No detectable leukemic cells from the FISH test. We're very excited and very relieved at the news. We weren't expecting this until mid-2009 according to the average time lines for Gleevec response.

This post is late because I wanted to surprise my family with the news Christmas morning.

I'll be back at Stanford in March, 2009 for my next checkup. In addition, I'm planning on returning to work in mid-January. It'll be nice to start a normal routine again.

In other news, I'm not a fan of putting clothes on dogs, so my mother-in-law (tongue firmly in cheek) keeps sending us outfits for Leu. I broke down and took some pictures in the Santa costume.

Merry Christmas, Merry Xmas, Happy Hanukkah, Happy Kwanzaa, Happy Winter Solstice, Happy Holidays, Happy December!

Because I've Always Wanted To

2008-12-10T00:40:00.000-08:00

I've always wanted to go sky diving just to be able to say that I did it. But I have an immense fear of heights that never let me get anywhere near this activity. Until last weekend... :-)

It's funny how a major illness will change your outlook. I actually smiled and gave a thumbs up when I reached the door of the airplane and tumbled out. I enjoyed the entire trip from 18,000ft back down to sea level.

That's right, I jumped out of a perfectly good airplane! And I loved it! I feel like I've conquered a lifelong fear.

(Check out the plane in the background of the photograph.)

My brother Todd and my intrepid wife Wendy (who I think only agreed to do this as a huge favor) joined me on December 6th, 2008 at Skydive Monterey Bay for a tandem jump from 18,000ft (the highest you can legally jump in California) to free fall for a full 90 seconds before gliding gracefully to the ground.

I splurged for an "in-flight" video and I'm glad I did. Here's the entire experience captured skillfully by Jamie from Skydive Monterey Bay.

I asked the guy strapped to my back if he could do some cool stuff on the way down like a head first dive or a somersault or something. I figured if I'm going to do this, I might as well do it right. He didn't seem to too keen on this idea but took pity on me about half way down and spun us around pretty fast.

The day wasn't without it's scary moments however. After our chute deployed and we were floating calmly around, "guy-strapped-to-my-back" points out toward the ocean where a parachute is floating listlessly away with nobody underneath it. He informs me that it's a "cut away". It apparently didn't open correctly and had to be cut away so that whoever was under it could deploy their backup shoot.

Guess whose parachute this was? Yes, you guessed correctly: it was Wendy. She made it safely to the ground though and now has a great story to tell about this experience. This would happen to her with our luck this year. "Guy-strapped-to-her-back" said he's jumped over 3000 times and this has only happened to him 3 times. Pretty low odds....

Here are some additional pictures. You can also see all the pictures on my flickr account.

(Keep your mouth closed stupid...)

(Such a beautiful view.)

There's a blogger named Kairol Rosenthal who previously beat cancer and writes prolifically about how cancer affects young adults like herself. Recently she wrote about becoming more cautious since her cancer. I think I've gone a little bit in the other direction, throwing caution to the wind and doing some things I've always wanted to but never had the guts to. Then again, I've always been a little "buttoned-down" so maybe I'm just moving more toward "normal". If nothing else I think my life is richer from this experience. Not only did I conquer a deep fear, but it was probably the single most exhilarating thing I've ever done.

Tubthumping

2008-12-02T18:13:00.000-08:00

There's a song by Chumbawamba called "Tubthumping" that goes:

I get knocked down,
but I get up again.
You're never going to keep me down.

We sing the songs that remind us of the good times.
We sing the songs that remind us of the better times.

There's a girl named Dawn on the East Coast that has CML and is 6 days post stem cell transplant. She's developed a condition called veno-occlusive disease (VOD) as a side effect of her transplant. This morning, Dawn experienced respiratory failure due to fluid in and around her lungs and around her heart. As of 8pm tonight, she's on a ventilator and in stable condition.

She was diagnosed in March of this year, 2 months before I was. It's amazing what different courses this disease can take. I've met people who have died from it, people who started taking Gleevec a few years ago and lead normal lives now, people who've been cured by transplants, and I've met Dawn, whose complications keep knocking her down. But she keeps flashing her mega-watt smile and getting back up.

It's the holiday season. She should be battling traffic, shopping malls, family meals, and anxiety over the perfect Christmas present for her boyfriend. Instead she's battling fluid filled lungs, morphine for pain, hospital food, and VOD.

Please join me in singing a song to remind her of the better times until she's there again. All my love goes out to her and her family in these trying times.

Best. Week. Ever.

2008-11-16T00:18:00.000-08:00

Hopefully you're familiar enough with Comic Book Guy from "The Simpsons" to be able to say the title in his voice.

This has been a great week. No nausea, more energy than usual and a November that feels like September. I actually did some yard work today! (Much to Wendy's delight....) I can't hold a glass of water steady right now due to shaky muscles, but the lawns are mowed and the hedges are trimmed!

I received a call from Carolyn at OHSU a couple of days ago with the results of my Gleevec level test. I'm on the low side of the "normal range". She said they like to see the level at 1000 (not sure about the units) and mine was at 590. Below 500 is apparently bad ("non-theuraputic" I think she said). This means my dosage cannot be lowered to reduce side effects. Luckily, this week they are lower than I think they've ever been.

And now from the "random-moments-of-the-universe" department:

I still have trouble sleeping at nights and end up watching a fair amount of T.V. Last night I'm watching a Law & Order episode from 2002 called "Undercovered". Detectives Briscoe and Green are investigating the murder of an insurance adjuster. They eventually arrest a cable installer who's van was present at the crime scene and who was in possession of a hammer that was determined to be the murder weapon. As A.D.A.'s McCoy and Southerlyn try to determine a motive they discover that the man's daughter had a disease.

Guess what disease.

No really. Guess. I'll wait....

It's CML! The father murdered the insurance adjuster because they had denied treatment with a new, but expensive wonder drug and approved a bone marrow transplant instead. Since the family was Hispanic, the odds of the little girl finding a matching donor were near zero. So the father bashes the adjusters head in with a hammer. Two guesses what the wonder drug was....

Gleevec!

(Did you get it in one guess?)

How's that for random coincidence? It's three o'clock in the morning and I'm on the couch freaking out, waking up Wendy because I just can't believe what I'm watching.

It made me think though:

Did Druker come to work the next morning back in 2002 and get heckled in the hallways?
Did insurance companies really deny treatment with Gleevec in the beginning due to the exorbitant cost?
Did someone with CML awaiting a transplant discover Gleevec through this episode in 2002 and change the course of their treatment?
Will Wendy forgive me for waking her at 3am to share something that could have easily waited till 10am? (Yes, for those of you keeping score, she did.)

This the first time I can remember personally "part of" something that's been dramatized on T.V. And it had to be cancer. What the fuck? Why not "Girls Gone Wild"? Or a documentary on the lives of lottery winners?

Ah well, one can hope.... :-)

Something Goes Well

2008-11-03T21:41:00.000-08:00

...and it's about damned time.

Wendy and I have just returned from beautiful Portland, Oregon and our visit with Dr. Druker. It went well. Very well. The leaves are turning in Oregon right now and it's downright gorgeous. Smatterings of reds, golds, yellows and oranges throughout the city and hills make this a beautiful time of year.

Dr. Druker works at OHSU and was responsible for some of the original research that brought about Gleevec, the drug that is currently keeping my leukemia in check. The main campus is situated amongst the trees atop a hill in southwest Portland. It has a grand view of the river and a good portion of downtown. If it had been clear, I'm pretty sure we could have seen all the way out to Mt. Hood. Alas, it was cloudy for our entire stay.

Wendy and I met with Dr. Druker's nurse, Carolyn for about 30 minutes. We went over my medical history, my current treatment status and the side effects I was experiencing. She was a pleasure to talk with and was very thorough. After this we were joined by my parents and Dr. Druker talked with us for about 2 hours. It was a very enlightening and uplifting experience.

Rather than rehash the entire conversation, here are some high points:

His explanation of the difference and usefulness of the three tests for CML (CBC, FISH, and PCR) was the best, most clear presentation I have ever heard or seen. I feel like I actually understand the difference and what a doctor is looking for with each. I wish that I could have recorded this so that I could post it online for others.
My current treatment regimen and response to Gleevec is what he would expect. He implied that I was being well taken care of by Dr. Coutre at Stanford.
My fatigue and nausea are not where he would expect them to be for someone who has been on Gleevec for 4 months. He says they should have lessened by now. I returned the next day for a blood draw so that a "level test" could be done to see how much Gleevec was in my bloodstream 24 hours after having taken my pill. The results should be back within a couple of weeks.
He recommended another bone marrow biopsy in December as a matter of course. It seems that there is some differentiation between doctors on this point. Some are satisfied with the FISH test result at 6 months, some like to be more cautious (or thorough, or paranoid depending on your viewpoint) and stab your bones with a giant needle. We'll see what transpires in December.

Dr. Druker is a genuine pleasure to speak with. We never felt rushed and he was downright brilliant at distilling complex topics into something that my whole family could understand (I really wish I could pass along his "tests" discussion, it was awesome). He and Carolyn had several suggestions that we're going to try regarding my side affects. I'll be going back to the compazine for nausea, trying daily Citrical to alleviate muscle cramps and aches (despite those utterly horrid Paul "I Have No Integrity Because I'll Read Whatever You Put In Front Of Me" Harvey ads for it), and TUMS for immediate "emergency" cramp relief (lately my feet twist up into balls and won't let go).

Oh, and did I mention that we get to make a baby?

Here's a video* I found that I think accurately depicts how I feel about that:

Can you sense my joy?

According to Dr. Druker, there's no real reason we can't have a child while I'm on Gleevec. There's a theoretical chance that it could cause a birth defect, but no real evidence exists that demonstrates that. He has several patients that have fathered children, all of them healthy. I can't express how ecstatic this makes me feel.

One request: Please do not ask myself or Wendy how things are going on this front. When we have good news, we'll spread it loudly, far and wide. Till then, no inquiries, please. Assume we're still "busy".

For the remainder of the trip we dabbled with a few sites around Portland. We drove along the Historic Columbia River Highway and saw Wahkeena and Multnomah Falls. On Saturday we went wine tasting in the Willamette Valley before seeing my parents off at the airport. Wendy and I also drove up to Mt. Hood all the way to Timberline Lodge. We would love to go back in the winter to stay and do some snowboarding here.

Did I mention that we get to have a baby? :-)

(* I made the clip from a longer video by a guy named Tony. Hopefully he doesn't mind that I shortened it. Here's the entire video if you're interested.)

Off to Oregon

2008-10-28T18:18:00.000-07:00

Wendy and I are off to Oregon tomorrow evening for our visit with Dr. Druker at OHSU. We're scheduled to see him at 1:30pm on Thursday for about an hour or so. Our main goal is to get some information that will help us with our plans for having children.

We're staying in Portland till Sunday so that we'll have some time to experience the city. My parents will be accompanying us for their first "cancer" doctor visit with me. It's fantastic that they will be able to be there with us to help with questions and retention. I usually end up mentally frozen when I go to the doctor and completely forget most of the details that are discussed.

On a somewhat related note, some friends and family have told me that they'd like to offer help but aren't sure what to do. I found a great book called "How Can I Help? Everyday Ways to Help Your Loved Ones Live With Cancer". It does a great job of explaining what cancer patients in general go through medically, gives some ideas about small ways to help, and most importantly I think, outlines some things that you should not do. My favorite chapter lists the different types of well-meaning but generally unhelpful "cancer friends". If you notice yourself in this chapter, please reconsider your position. :-)

I'm able to drive regularly now; the vertigo and dizziness have mostly subsided. I'm still plagued by fatigue, insomnia (ironic considering that I'm tired all the time), nausea in the evenings and muscle cramps. Because of these, my disability has been extended to the first of January. In some ways that's good since a "full day" of activity right now is only a few hours long. Though I never thought I'd say it, I think I'm actually starting to miss the routine of work....

A New Normal

2008-10-15T20:49:00.000-07:00

Wendy and I attended a support group for survivors of blood cancer and their caregivers last night at the Stanford Cancer Center. Unlike our last (non) experience at Good Samaritan this one actually had people attending. It was run by an LCSW that volunteers with LLS and an oncology nurse that works at Stanford Hospital.

The group was attended by 2 cancer survivors (including myself) and 3 caregivers (including Wendy). It turned out to be a good size for such a group as each person got plenty of time to talk. Interestingly, I was the only male in the room.

The LCSW directed the meeting, mediated topics and comments, and offered some very good insight and advice based on each individual's discussion. The oncology nurse provided some medical knowledge as well as additional advice and background on dealing with cancer, it's side effects, and it's treatment.

From the meeting I took away a few thoughts that I think made the experience very worthwhile. There were two individuals attending whose significant others recently received diagnoses of blood cancer, one with AML (the acute form of my cancer) and one with Hodgkins Lymphoma. It saddened me greatly to hear of how much their loved one's cancer had affected their lives. Each was currently preparing for a stem cell transplant and each spouse was in the hospital full time. It was wrenching to watch them explain how painful it was to watch their loved ones go through such debilitating treatments and how difficult a time they were having coping with the way their lives and relationships had changed.

In some ways this made me feel guilty for having such a difficult time working through what my own cancer means to me. In comparison to these two people and their spouses, mine is a walk in the park. In another way though, it became very real how much more difficult things could be and how thankful I should be for the breaks I do get. A few people actually commented that dealing with an acute cancer like AML or a chronic one like CLL or CML is difficult and painful in different ways. It is okay to have a difficult time dealing with cancer no matter what form it may take. It was enlightening for someone to give me permission to feel bad and to have a difficult time coming to terms with CML even though others may be having a much worse trek than I.

In addition to this revelation I took the quote that named this post from one individual at the meeting. People with cancer - any kind - must get used to "a new normal". Things will not be the way they used to be. What used to be "normal" may now be impossible, non-existent, or take a very, very long time to work back to. Psychologically, physically or emotionally, things will be different and the point from which "normal" is measured will have moved.

For me, I think my "new normal" has a lot to do with physical activity and my psychology. Right now, I just can't do all the physical things I used to do. I don't have the stamina, the energy or the strength. Psychologically it means I'll always measure everything I do against how much time I think I may have left. The treatment I'm currently undergoing won't cure my cancer. It will only keep it down. Current data for Gleevec only goes back six years which means I know the odds that I will live at least six years are 95%. Who knows, I may live out a normal lifespan. What I've been having a difficult time with is that no one knows. It's different from knowing that I might get hit by a bus tomorrow and die. There is something inside me actively trying to kill me. It's not a freak occurrence like a bus. It's in me and it's working against me right now.

The "new normal" comment really struck me . I can't help that I'm not the same I used to be. I'll need to physically work my way back up to where I was, and I may never actually get to be the same. I'll think about things differently and may make different choices than I would have before. They'll be normal for me, just a different normal than I've been used to.

South of the Border

2008-10-01T18:22:00.000-07:00

Our good friends Phil and Kelly offered to host us on their sailboat in El Salvador for a week. Since I'm not currently working, and since I can sit on their couch just as easily as I can sit on mine, we took them up on their offer and spent the last week in beautiful and warm (very warm) Bahia de Jiquilisco, El Salvador.

Wendy and I flew into San Salvador where we were picked up by Phil, Kelly and the two boys Alexander and Nicholas. For the next 6 days we stayed aboard their yacht "Samadhi".

We hiked into the jungle and got to play with some monkeys:

We wakeboarded behind the dinghy (that's Wendy):

And we were introduced to a new sport called "yachtipulting". Basically you attach a long rope to the top of the tallest mast and let that hang down to the deck. Then you attach another rope to that and tie it to the dinghy. You hold the rope on the deck and the dinghy drives away, flinging you up and out into the water. It was quite fun.

I was the guinea pig, here is our first failed attempt (the handle broke):

It got better after that. Here's Wendy:

And here's me:

We also visited some nearby towns and talked with some locals. All the people we met were very, very nice. We feel lucky to have had the opportunity to see a part of the world we otherwise would probably never have gotten to visit.

I only had two bad days where I slept most of the time and felt generally awful. Other than that, we took things slow, made sure to drink lots of water and get lots of rest.

Many, many thanks to Phil, Kelly and the boys for being such gracious hosts and showing us such a wonderful time.

You can see all the photos on my flickr page. (If you want to only see the El Salvador photos, just look for all photos tagged "El Salvador".)

Same Ol' Same Ol'

2008-10-01T16:35:00.000-07:00

Wendy and went to Stanford yesterday for what I think was our first "routine" checkup. My blood was drawn, the numbers were normal, we talked with Dr. Coutre about what the next steps were and then we were on our way home.

No revelations, no surprises, no bad news (minus the fact that I still have cancer...), no drama. It's kind of nice in a way for things to have calmed down and normalized. I'm doing well on the Gleevec, the side effects are annoying and frustrating but tolerable, and everything seems to be moving in the right direction.

Our next visit will be with Dr. Druker in Oregon on October 30th for information about fertility and to make sure my current course of treatment matches up with what he expects. After that, I'll be back at Stanford on December 16th for my 6 month FISH and PCR tests. The hope is that by this time I'll be in cytogenetic remission (no leukemic cells in the blood or bone marrow).

Till then, keep your fingers crossed and keep thinking good thoughts.

I Love Numbers

2008-09-30T23:42:00.000-07:00

I've written a small application to generate charts of my blood work. You may have noticed the "Cancer Statistics" link in the side bar. This used to contain 1 (relatively ugly) chart. I now have charts for White Cells, Red Cells, Hemoglobin, Neutrophils and Absolute Neutrophils. As soon as I have more PCR data, I'll add a chart for that as well. Each chart notes significant events and indicates a normal range for the reading.

Not to geek out on you (which means I'm going to) but it's interesting the story the charts tell. In particular note the Neutrophils and Absolute Neutrophils charts. The Neutrophils chart shows the percentage of white blood cells that are neutrophils. The Absolute Neutrophils chart shows the actual number of neutrophils. For instance, if the white cell count was 1000 and the neutrophil reading was 65%, the Absolute Neutrophils would be 650.

The percentage of white blood cells that were Neutrophils started out low (between May and mid June 2008). However, the actual number of Neutrophils (the Absolute Neutrophil count) was very high. Based on this we can tell that I had a very high number of abnormal white blood cells that weren't neutrophils. This caused the percentage of neutrophils to be low, but the absolute count to be high. This means I had so many junk white cells that even though the actual number of neutrophils was very high, there were relatively few compared to the overall white cell count.

The application I wrote makes it easy to update and publish these charts so they should stay up to date each time my blood is drawn.

Thank You Team In Training

2008-09-20T14:12:00.000-07:00

Amidst all the hubbub this week I arranged to attend a Team In Training practice session so I could hand out beverages and snacks and say thank you to the people that are raising money for the Leukemia and Lymphoma Society.

As I understand it, some Gleevec research was funded in part by the LLS. I wanted to meet the people that raise the money and say thank you in a small way. Bananas, pretzels, Gatorade and water are a very small way. I also thought it might be nice for the Team In Training participants to meet someone who is directly affected by their efforts.

Wendy and I arrived at Los Gatos High School a little early and hung around the track watching the high school marching band practice. I'd brought an ice chest full of water and Gatorade along with some bananas and pretzels for the athletes. We set up two chairs, laid out our goods and watched the participants circle the track for the workout.

Leu (Cancer Dog) was a huge hit. If you ever want to make friends or meet people, buy a cute and friendly dog.

During the practice we talked extensively with Becky (the South Bay Run Team coordinator) and several of the mentors, captains and participants. Apparently there are over 600 participants in the Silicon Valley Chapter Team in Training alone. For some people this was their first Team In Training experience, others had been doing it for years.

We met one woman whose daughter was diagnosed with Acute Lymphoblastic Leukemia at 14 months. She is currently in remission. Her mother raises funds and runs in her honor each year. Another gentlemen was diagnosed with Lymphoma 5 years ago. He has had several brain surgeries and had to learn to walk and speak all over again due his treatment. He doesn't remember over 2 years due to the surgeries and radiation. It puts a little perspective on things to speak with others who are walking such a hard path with their cancer.

We liked it so much we went back this morning to hand out water along the running trail and cheer the athletes on.

This is my message to Team In Training athletes and organizers:

You raise money for the Leukemia and Lymphoma Society.
This money goes into research for drugs like Gleevec.
This means Gleevec is available to me.
This means my life expectancy is more than the 4-5 years it would have been had I been diagnosed 10 years ago.
Gleevec also means I don't need to immediately undergo a Stem Cell Transplant.
This means I don't need to spend months in the hospital for a procedure that kills 25% of the people that undergo it.
This means I get to stay home with my wife, keep my job and (as soon as the Gleevec side effects die down) get on with my life.

"Thank You" is not adequate, but thank you nonetheless.

Creeky Wheels

2008-09-19T19:31:00.000-07:00

Tuesday morning my lungs started to hurt. It felt like an elephant was sitting on my chest and I couldn't quite get enough breath in. One of the potential side effects of Gleevec is fluid in the lungs, so of course I start worrying that my lungs are filling up with fluid. This persisted and was joined by chest pain on Wednesday evening, so I finally drove my stubborn ass into my GP's office on Thursday morning.

He checked my spleen, drew blood, did an EKG and listened to my lungs. Nothing seemed out of whack. To be safe he shoehorned me in for a CT Scan at Good Samaritan hospital that afternoon to make sure that my lungs were empty, there was no fluid around my heart and I didn't have any clots in my chest or lungs.

I drove over to hospital and tried to check in. They'd never heard of me. As they're on the phone to my GP trying to get things straightened out I joked to the receptionist that I was probably at the wrong hospital. She says "You're supposed to be at the hospital?" I tell her "Yes, at Good Sam." She laughs and informs me that I'm at a private radiology clinic and the hospital is another 1/4 mile down the road. Feeling a little stupid I make my way over to the actual hospital with my proverbial tail between my legs.

Filling the radiology admitting form out I got a little emotional. It lists a set of conditions that the department might need to know about before scanning you. I had to check the box that says I have cancer. I've never had to check "Yes" for any of those little boxes before. It's strange how such small things force you to think about the cancer and make it more real.

This was my first CT Scan. It's a large donut shaped machine with a movable bed that you lie on which moves you back and forth through the donut hole. They hook you up to an IV (my second stab of the day, now I have holes in both arms) and pump you full of saline. The machine whirs into action and you alternate between holding your breath and breathing normally as they slide you back and forth through the donut.

During the scan they injected me through the IV with Iodine to provide contrast. I was told it would burn and give me hot flashes. I hear the IV gurgle a bit as the Iodine works it's way into my blood stream but feel nothing. Suddenly I'm literally wetting my pants. I think to myself that there's no way they pushed that much fluid into me. When the nurse comes back into the room I sheepishly tell her I think I wet myself. She smiles kindly and says not to worry, it was just a feeling caused by the Iodine. Sometimes it can give you the sensation of urinating. Thankfully, when I get off the table, I'm dry as a bone. Strike two for me today....

Wendy arrived at the hospital just after my scan was finished (she drove over an hour to be with me). We waited in a tiny waiting room till a radiologist told us the scan looked normal. I was glad my lungs were empty and I wasn't retaining fluid around my heart but it's frustrating when you hurt and the doctors can find nothing wrong.

My GP decided to schedule an Echo Cardiogram for Friday morning to make sure I wasn't experiencing any type of heart failure (which is another possible side effect of Gleevec). We showed up at the cardiologist's office at 7:30am (after a heroic effort from Wendy to get me out of bed) where I was gooped up and probed by a technician.

Echo Cardiograms always scare me because you can see how utterly fragile the heart looks with it's thin little valves constantly flapping away. It's amazing to see the structure and imagine how many things could go wrong and yet it sits there stubbornly beating away. The whole procedure took about 20 minutes, after which we were on our way back home.

Happily, the results came back completely normal. So now I feel like a guilty hypchondriac for having all these tests run on me and not one of them show something wrong. I guess I can chalk this up to another phantom side effect of the Gleevec like my "kidney pain" that turned out to be muscle spasms and cramps in my back. Maybe I am paranoid but at least I know I'm healthy*.

* Minus the cancer of course. :-)

The Sound of Crickets

2008-09-10T21:02:00.000-07:00

We decided to try attending a cancer support group. I thought it might be beneficial to meet a real live person dealing with the same things Wendy and I are. We found a group close to us through the Leukemia and Lymphoma Society that meets the second Wednesday of each month at Mission Oaks Hospital (associated with Good Samaritan Hospital) in Los Gatos. I called and talked with a lady in late August who informed us there was no need to register, we could just show up.

We left a little early tonight to give ourselves plenty of time. We got to the hospital about 30 minutes to spare. When we went inside we found it completely deserted. There was no one at the front desk, no one at information and no one walking in the halls. We didn't see any signs with information about any support group either.

Wendy and I tentatively searched for a human being for about 10 minutes before finally reaching behind the front desk for the phone and dialing security. A nice gentlemen came and met us in the lobby and said his best guess for a support group meeting was to try the second floor.

Up the elevator we went and finally found an open office with someone in it. She knew nothing about a support group meeting. As we headed back toward the elevator, essentially defeated, we were met by the security guard who told us another woman had shown up and that the meeting was in the library on the first floor.

By now it was five minutes till the meeting was supposed to start. Back down the elevator we went, down another deserted hallway and through the library doors to find... nothing. Nothing but books. No group, no social worker, nothing but books. We perused the books for 10 minutes, getting more frustrated as time passed. Finally, an older woman approached us and asked if we were there for the support group. She went on to tell us that this was the second time no one had shown up. She had tried to attend last month with the same result. We halfheartedly laughed about our bad luck and made our way back out to the car.

So if anyone in the Bay Area is looking to attend the Cancer Support Group at the Mission Oaks Hospital, don't bother. It's apparently defunct.

We're going to try a support group at Stanford in October that meets every second Tuesday of the month. It's a little further to drive but hopefully we get better results up there.

An Official Streak

2008-09-04T14:59:00.000-07:00

I've been feeling "good" for about a week and half now. Besides fatigue all day and annoying nausea at night, I've been up off the couch and doing small projects around the house. I'm officially on a "feel good" streak!

I take Dramamine at night for the nausea (where the drowsiness actually works for me instead of against me) and make sure not to push myself during the day. I still have a hard time getting out of bed before 11 and take naps during the day.

My brothers came down to visit me over labor day weekend. It was awfully generous of them to make the long drive and wile away their long weekend with me just relaxing and talking. I really appreciated their company.

We've booked our flight and hotel for our trip to Portland to see Dr. Druker. The nurse coordinator from OHSU sent us a very large packet of papers to fill out. It also included recommendations for hotels that cater to visiting patients. It's amazing the discount you can get at the local hotels being a patient at OHSU. We've decided to make a weekend out of it. We'll fly up on a Wednesday, have the appointment on Thursday and fly home on Sunday. Hopefully there are some low key sites around Portland to enjoy.

In the meantime I'm almost finished reading "Chicken Soup for the Surviving Soul". It was sent to us by one of Wendy's aunts. The stories are about people who have survived cancer or have someone close to them who has survived. They are written as uplifting and hopeful, but reading them is sometimes hard. A lot of the stories focus on cancer in a past tense. They gloss over all the time and energy it took to reach the "uplifting and hopeful" perspective they now have. I haven't quite turned that corner yet. I think I'm still stuck in the "uncertainty" and "unfair" mindset. It is nice to know though, that so many people can look back so positively on their experience.

On the DL

2008-08-29T00:30:00.000-07:00

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.

Benevolent Insurance?

2008-08-27T22:38:00.000-07:00

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.

3rd Time Is A Charm

2008-08-23T15:56:00.001-07:00

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.

Adrian

2008-08-20T22:08:00.001-07:00

Rest in peace Adrian....

Continuing Ugh

2008-08-20T21:23:00.000-07:00

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?

2008-08-20T15:51:00.000-07:00

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.

Lucky?

2008-08-17T23:30:00.000-07:00

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.

Ugh

2008-08-17T19:13:00.000-07:00

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....

Changing Horses and a Good Score

2008-08-12T17:52:00.000-07:00

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....

A Good Day

2008-08-11T21:24:00.000-07:00

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... :-)

Family Support

2008-08-10T22:49:00.001-07:00

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.

Road Trip!

2008-08-04T21:01:00.000-07:00

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.

Getting Out Of Dodge

2008-07-24T14:14:00.000-07:00

Wendy and I have decided to take a break and drive out to Colorado to see her family for a week. We need a change of scenery. Early tomorrow morning we'll pack up the car, load the dog and head out.

We've arranged to take Monday's blood test at Montrose Memorial Hospital to see how my white cell count is doing. We got an order from Dr. Cohen that we'll fax out to my mother-in-law who has kindly offered to set things up for us. If my neutrophil count has risen back above 1000, I'll start back on the medication.

Since my neutrophil count is so low right now, I'm supposed to avoid people with infections, colds or the flu. Unfortunately, as of last night, this means my mother-in-law. We're hoping that hand sanitizer and possibly a hospital mask will do the trick. Hopefully we won't have to stay elsewhere while we're there (or worse, kick her out of her house...).

Losing Weight

2008-07-24T14:03:00.001-07:00

I've been off the Gleevec for 4 days now and have lost about 5 pounds. Gleevec can cause you to retain fluids. Based on the number of times I had to get up to pee last night (6), all 5 pounds were fluid.

Something Positive

2008-07-22T17:05:00.000-07:00

I think things have been pretty negative lately. Sometimes it's hard to remember the good things. On the profound advice of my mother to "think positive" here are some things that are positive in my life:

I love my beautiful wife.
My beautiful wife loves me.
My family loves us.
Wendy's family loves us.
We're both successful.
We've been boating this summer.
My brothers are also my friends.
Our dog is pretty cool.
My boss has been more than understanding with the amount of work I've missed.
I've received sympathy cards in the mail. I love mail.
My health insurance is paying for my treatment.
We still have options.
We have good friends.
We like the town where we live.
Things could be much worse.
We have a beautiful back yard.
It's not 10 years ago when Gleevec didn't exist.

Bob Ropp, a longtime family friend, married Wendy and I on June 24, 2006. He and his wife used to babysit my brothers and I when we were very young. Wendy and I scripted the entire ceremony ourselves except for a section where Bob could inject whatever words he felt appropriate. This is what he said:

It doesn't matter where you go in life...
What you do...
Or how much you have...
It's who you have beside you.

Wendy and I have always thought that was the most thoughtful and touching part of the entire day. As a wedding present he gave us the same saying painted on canvas under a red heart. It hangs in our bedroom where I see it every time I wake up or fall asleep.

The most positive thing of all is who I have beside me. I couldn't do this without you Wendy. I love you very much and I promise to grow as old and wrinkly as I can with you.

How This Should Have Gone

2008-07-22T15:42:00.000-07:00

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?

Hope Dies Anew

2008-07-21T19:04:00.000-07:00

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.

Another Day On the Couch

2008-07-19T22:06:00.000-07:00

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.

A Nice Gift

2008-07-19T11:02:00.000-07:00

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.

Low White Count

2008-07-15T18:46:00.000-07:00

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.

Cancer Dog

2008-07-11T18:29:00.000-07:00

Neither of us has been to work all week. We're both very down. We alternate between numbness and sadness. We've both cried a lot.

Wednesday we went back to the doctor for a D&C. Wendy did great and her doctor was very thorough in explaining the procedure to us. The nurse that tended to Wendy in recovery was one of the nicest ladies I've met in a hospital.

The uncertainty of how or whether we'll be able to get pregnant again is weighing very heavily on our minds. I can't stop thinking about it. How long will I need to be off the Gleevec? Will we need to conceive using alternative methods? Neither of our health insurance coverage will pay anything for fertility treatments. Will we be able to afford to get pregnant again?

So we adopted a dog. We got him yesterday from the Monterey County SPCA. He's a 6 month old terrier mix, just north of ankle biter and quite a bit south of full size dog. He'll only grow to be about 20 pounds. He's very cute and make us very happy.

We've named him Leu (pronounced "Loo"), for leukemia. I bought him an orange collar and leash. He likes to play frisbee (though he can't catch it yet) and snuggle. He's pretty much the perfect dog right now. Other nicknames include "Power Dog", "Cowboy", and "Cancer Dog".

We feel lucky to have found him, and right now we'll take whatever luck we can get.

Complications

2008-07-08T12:26:00.000-07:00

Apparently, you're not supposed to get pregnant while on Gleevec. For females it's a definite. For males, it seems like opinion is split about 50/50. Some say you can, some say you shouldn't.

We've lost two babies and trying for another one doesn't look like it will be as easy as some wine and Barry White.

We've scheduled an appointment at Stanford on July 21 with Dr. Coutre to find out how we go about getting pregnant again.

Hope Dies

2008-07-07T18:11:00.000-07:00

I never expected life to be fair. I didn't expect it to fuck me in the ass either.

We went to Wendy's OB/GYN today for a CVS test. It will tell us if there are any major chromosomal abnormalities in our baby. We spend a few minutes with a genetic counselor who asks about our family tree and diseases.

We're then shown to the examination room where Wendy is placed on a table. A nurse starts an to perform an ultrasound on her stomach to determine where the baby is located. This will determine whether the doctor goes in abdominally or vaginally.

I watch the monitor as she maneuvers the wand. It takes her awhile to locate the dark blob that is our baby. I notice the look on the nurse's face and I know something is wrong.

She asks how many weeks along the pregnancy is. We tell her 11. Wendy asks if the baby is still there.

"I'll need to get the doctor to check that out. One moment." She leaves the room and I move closer to Wendy and take her hand. I tell her not to worry. I know she doesn't believe me. She starts crying softly.

A tall, slim, gray haired man comes in and takes the nurse's place. He's the doctor. After fishing around with the wand for a few moments he informs us that there is no baby. My heart falls out of my chest and bounces off the floor. Wendy is crying uncontrollably. I feel so bad for her. So bad for us. There is no possible way that life could be this unfair to us. There is no way that we could miscarry twice in a row and get cancer all in one year. It's not possible.

I feel a hand on my shoulder and look up. The genetic counselor is there and says she is so sorry. Someone get's Wendy a glass of water and some Kleenex.

The room clears out except for Wendy and myself. As the door closes I hold Wendy in my arms and we just cry together. This is the second time we've been through this in less than 4 months.

What else can I say?

Fuck.

Look Ma, I Have Cancer!

2008-07-06T17:51:00.000-07:00

Wendy and I went to Chester for the 4th. We drove up Thursday night and met my parents at the campground at Lake Almanor. Everything was already set up and Mom was getting ready to cook dinner.

On the drive up Wendy and I talked about how I would tell my parents I had cancer. I wanted to use jokes to lighten the mood. Wendy - rightfully - thought that would be in poor taste.

Thursday was a beautiful evening. Not too cool and the smoke from the Cub Complex fire had cleared a little so that you could see the stars. My brother Todd and his wife Ellen, my brother Ryan and my parents were seated at a picnic table cocooned in the glow of a Coleman lantern. I serendipitously ended up being right in the middle with Wendy.

I asked if anyone had any announcements, since after I made mine, no one else would want to.

None of my family know that we were pregnant yet, but everyone keeps asking and harping on it. I know they think we're about to say "We're pregnant!" We don't.

How do you tell your parents you have cancer?

"I have cancer," I say. "It's called Chronic Myelogenous Leukemia."

All the faces around me are stuck half way between incredulity and disbelief. It's very quiet. I go on to explain what it means, how I found out and how it's being treated. No one really asks any questions. I think everyone is having a hard time processing the information. Everyone's eyes are red from tears. I make lots of bad jokes since it helps to ease the tension for me. Wendy made cookies with orange frosting and snide comments like "Fuck CML" written on them before we came up. She passes them out and everyone has a couple.

It feels good to be able to soften the bad news by telling them that the Gleevec is working.

We spend the next couple hours talking about what Wendy and I have been through the past few weeks. My mom hugs me a lot. Finally, around midnight, my parents pack up and head home. It feels like they're saying good bye as if I'm not coming back. My Mom doesn't let go of me for at least a minute.

It's nice to feel loved.

That night is a very nauseating night. I don't sleep well. The next day I don't feel well either. I'm very weak and the sun bother's me. I spend the weekend talking with my brothers, making jokes, sitting around the campfire and basically pretending that things are normal. People don't bring up the bad news at all really. I think it's hard to know what to say.

After the parade on the 4th, we walk around town. I see a few friends from high school and it's very awkward talking to them. My life has changed so much but I still answer "Doing great!" to the inevitable question that everyone always asks: "How you doing?"

Leaving today was especially hard. I think I went through everyone twice for hugs goodbye. Everyone cried. I feel very numb again. I feel like I need to reassure everyone that it will be alright, even though I don't know that myself.

I hate that I had to tell my mother I have cancer.

Good News and Stanford

2008-07-01T21:11:00.000-07:00

We went to Dr. Cohen's office this morning for a check-up to see how my body was doing on the Gleevec. My white cell count was 11,000! Normal range is 3,900 to 10,900. This was very good news. It means my body is responding well to the drug.

In the afternoon we went to our appointment at the Cancer Clinic at the Stanford Advanced Medicine Center for to see Dr. Coutre. He's a specialist in cml and we wanted to get a second opinion as well as have some additional questions answered.

My appointement was at 3:15pm. We arrived at 2:15pm to have blood drawn. We then waited in the clinic lobby till almost 4:30pm trying to entertain ourselves wondering why the clinic was so slow.

The kind of people you see at this clinic aren't like what I've gotten used to seeing at Dr. Cohen's office. A good percentage of the people here are wearing respirators and rubber gloves. A few even have I.V. carts. I assume that because chemo causes your immune system to weaken, they need to be extra careful to prevent getting an infection. There are a few people around my age here. At least they look like they might be in there 30's.

The hematology oncology center at Stanford is clinic C. Clinic D is neurology oncology. In very poor taste I joked with Wendy that we were lucky, we were only one letter away from a brain tumor.

Finally around 5PM I asked the lady at the front desk why we hadn't been seen yet. She said "Oh, you're back?"

Are you serious?? We still don't know if they forgot us or if we missed when they called our name. Either way, finally at 6pm we were called in and shown to an examination room. A male nurse took my vitals and left promising that Dr. Coutre would be in soon. At this point, we were worried that we'd waited all day for a rushed visit due to the late hour. We were afraid we would get none of our questions answered.

A med student named Rena Patel entered the room about 15 minutes later and asked if it was alright if she did the preliminary medical history questioning and examination. We agreed after which she proceeded to quiz me about my past medical history, how we had ended up at Stanford, what side effects I was seeing from the Gleevec, etc., etc. She also did a physical examination checking muscle response.

Rena was fantastic. She was very patient and forgiving while translating our layman's descriptions of what I was feeling into something medically comprehensible. We could tell she was a little nervous. I don't envy medical students in training. People expect doctors to be unwavering pillars of knowledge and wisdom. We expect them to be decisive and confident. After all, we're trusting them with our lives. Medical students are just learning. They're not yet confident in their place and they can't yet call themselves doctors. If it were me, it would be difficult to work with patients who might not understand that doctors need training and that I was still just learning.

Rena finished up and left us alone. We then waited another 15 minutes for her to return with Dr. Coutre. Our fears of being brushed off were quickly abated as Dr. Coutre proceeded to outline cml, what it was, how it affected your body, how it was treated and what we could expect.

We had many questions to ask, but only one that I really cared about:

"At this point, what are the chances that this is misdiagnosed? Is there any possibility that it's not cml?"

His response was short and confident: "None. This is what it is."

Fuck, now I really have cancer.

We finished asking our dozen or so questions which Dr. Coutre patiently and graciously answered before making our way out of the clinic and heading home.

Cancer Apparel

2008-06-30T23:30:00.000-07:00

I wanted some shirts that showed my disdain for cancer. I found Cafepress, which has quite a few shirts that align with my sense of humor.

I couldn't find a dark shirt (I sweat a fair amount more now that I'm on Gleevec) that had the right saying. So I made some.

Cafepress is actually a pretty cool service. You can upload any picture you want and put it on a variety of clothing.

Music and a Wedding

2008-06-29T21:05:00.000-07:00

Friday night we went to Berkeley for the Robert Plant and Allison Krauss "Raising Sand" concert. It was a great show although the weather was a little nippy and foggy. On the way to the show my doctor's office called and told me the complete biopsy results had come in. I was positive for the Philadelphia Chromosome. That result meant that there was really no hope now that this was anything other than cml. I think I had been holding out for this last result with a little bit of optimism.

That night we stayed in Pleasonton before heading to Long Barn on Saturday for Wendy's friend Colleen's wedding. The weather was great and the ceremony as well as the reception were very nice.

Unfortunately I was having a bad day. I was extremely tired, my sinuses were filled up and I was a little "out of it". I would get lightheaded very easily and had a difficult time focusing. We left the reception early and headed to our hotel in Sonora where I promptly fell asleep around 9pm.

Today I felt the same. We managed breakfast in downtown Sonora before Wendy drove us back to Morgan Hill while I slept in the passenger seat.

My Cancer Present

2008-06-26T20:54:00.000-07:00

We bought a T.V.

And a Blu-ray Player.

They're cancer presents to ourselves. We've wanted a wide screen T.V. for quite some time but keep putting it off because of the money. After visiting Europe last year we decided that we wanted to "do stuff, not buy shit".

Well, I wanted a T.V. damnit. And it's beautiful! We watched the "final cut" of Blade Runner as our first Blu-ray disc. Again, beautiful!

We'll be paying this off for awhile, but we got a good deal and it won't cost us interest for 18 months.

Something to be thankful for I guess....

More Side Effects

2008-06-23T20:38:00.000-07:00

I have a lot of pain in the my leg bones from knees to my hips. It feels like growing pains from when I was young, only a lot worse. It took over a day to figure out whether I could take Advil while taking Gleevec to alleviate the pain. In the meantime, walking was painful, sitting was painful, laying down was painful... you get the idea.

I'm still very nauseated at night. It's a focused nausea, more in my intestines than in my stomach. Sometimes it's painful just to roll over. I get very tired, very easily now too. Getting out of bed before 9:30 takes a heroic effort. If I do get up earlier, I feel like shit the rest of the day. I've been getting into work late, and even when I'm there I'm not very useful. I have a hard time concentrating and an even harder time caring. I have cancer, what the fuck do I care if I meet a deadline or not?

It's funny the things I've started to think about. I called my insurance guy and had him send over estate planning information. Wendy and I will need to get a will drawn up. Where do I want to be buried? Will I live to see our baby finish college? High school? Elementary school?

I don't want this cancer. I didn't ask for it, and I don't deserve it.

Side Effects

2008-06-20T20:53:00.000-07:00

It's been two days on the Gleevec. I get pretty sick at night and don't sleep well. I don't vomit but I feel very nauseous, to the point where I feel like I can't move. I take the pill about 1 hour before bedtime so in the hopes that I'll sleep through the worst of it.

I'm also taking a drug called Allopurinol to prevent a buildup of excess uric acid. Apparently as all the excess white cells die off uric acid is produced.

Gleevec

2008-06-18T17:11:00.000-07:00

On Tuesday I got a prescription for Gleevec. Gleevec is a drug that actually works very well against cml. It's only been out since 2001, but in the major study done on it, 90% of patients were still in remission after 5 years on the drug. This is a great thing since the only know possible cure for cml is a bone marrow transplant. In contrast to Gleevec, a bmt kills 25% of the people who undergo the procedure. It also involves very high dose radiation chemotherapy to prepare your body to accept the new stem cells.

So you could say Gleevec is a fucking miracle. The side effects are rare and usually small. They include nausea, fatigue, dizzyness, etc. Not too bad for a drug that keeps cancer at bay.

So how much do you think Gleevec costs? Consider that it's almost a cure for (one kind of) cancer. Would you believe $5000 per month? (Yes, five thousand.)

I'm damn glad about my health insurance coverage now. Someone at Blue Shield is pissing in their pants.

Details

2008-06-15T16:25:00.000-07:00

For reference, the Leukemia and Lymphoma Society is a wealth of information for cancer patients with leukemia or lymphoma. They have forums, downloadable pamphlets and booklets on the diseases, licensed social workers that you can call for free with any kind of questions, and a lot more. The booklet on CML does a pretty good job of explaining the disease in simple terms.

Looking up the details of cml on the web is a scary thing at first. Most information out there was published before Gleevec became the standard first line treatment. Average life expectancy was 4-5 years. I flipped when I saw this. All I could think was that I didn't want to die, I had too much left that I hadn't done yet. 35 was not the age when I should be buried.

Luckily, if you keep searching you find that Gleevec works very well. Only a small percentage of patients cannot tolerate it or become resistant to it. The 5 year remission rate is something like 85% (this means that after 5 years on Gleevec, 85% of the patients taking it are still in remission). Those are damn good odds.

Better yet, there are two new drugs with a higher potency than Gleevec. One of these is Sprycel.

Unfortunately, since Gleevec has only been around for a little over 5 years (and Sprycel even less so), no one yet knows what the long term survivability rates or side effects are. I figure though, if I'm still in remission after 5 years and it stops working then, the 4-5 year average will start there and I'll have had a good 10 years. I should get well past 40.

On a side note, orange is the color for leukemia. If you see an orange ribbon, it's for me and those like me.

Telling Wendy It's Official

2008-06-13T20:05:00.000-07:00

I went to work for about an hour today. I had to get out of the house away from people I had to entertain. Not that work is much better, but at least I can be gruff there.

I called Wendy and asked if she wanted to go to lunch. We met at Noah's Bagels in Santa Clara. We didn't even get all the way across the parking lot before it came rushing out. I told her the Dr.'s office called today and it was official.

We stood in the back of Noah's for about 10 minutes while she cried. Not the greatest setting to let the love of your life know that you officially have cancer. But I suppose there really isn't a setting where that kind of news goes over any easier. We ordered and sat in a corner. We ate. She cried. I felt numb.

We decided to skip the rest of the work day and went home and just lied on the couch together. Her family would be home in the evening so we had to pull it together by then. We just talked about how unfair this was, why was it happening to us, and what would we do now.

When her family arrived home from a day of shopping I was playing with my nephew and they were all talking about their day. Since they were leaving tomorrow for San Luis Obispo, I figured it would be cake to hold it together for one night.

A commercial for the Bucket List comes on T.V. It's a movie about two old guys that make a list of things to do before kicking the bucket. My mother-in-law Janet starts talking about how she and my father in law really need to make a bucket list.

Wendy starts crying uncontrollably on the couch and it gets very quiet in the living room. Janet goes to Wendy and hugs her and asks what's wrong. Wendy doesn't say anything. I figure there's no way to stave this off any longer.

"I have cancer," I say. My nephew is playing happily on my lap with his little hands gripped tightly around my pinkies.

"You're kidding," she responds.

No one says anything.

I go on to explain that it's leukemia and we just found out for sure this morning. She comes over and gives me a big hug. I'm tired of the attention being on me so I ask Wendy to tell everyone the really good news.

She explains that she's pregnant again. Suddenly everyone's smiling and my father-in-law shakes my hand. Up till now, no one had known that she was pregnant and only her mother knew that she miscarried earlier this year.

The rest of the evening is a blur of condolences, thoughts, prayers, anger, tears, and avoidance. I soon learn that people just don't know what to say to something like this. It's easier to just go on as if nothing was wrong.

I wish nothing was wrong.

Diagnosis

2008-06-13T11:30:00.000-07:00

Wendy's parents are in town. It's been hard to show fake faces as if nothing were wrong. I wasn't ready to tell anyone what was going on.

This morning I got a phone call from Dr. Cohen's office while I was eating breakfast on the back patio with Wendy's parents. The nurse told me some of the biopsy results were in and it was definitely cml. I can't think of a better day than Friday the 13th to be officially diagnosed with cancer.

If you read through the forums on the Leukemia and Lymphoma Society, every one seems to announce their diagnosis date as if it were some kind of badge. Well, my badge is 6/13/08. I officially have leukemia. I'm officially a cancer patient.

Fuck.

Meet Bob

2008-06-10T17:00:00.000-07:00

It occurred to me that I forgot to mention Bob. Bob is the person who has cancer, not me. While Wendy and I were talking about all that was going on I was very concerned for her stress level with the baby. I came up with this guy named Bob. We could imagine that everything was happening to Bob. Bob's white cell count was high, Bob was getting the bone marrow biopsy, Bob had cancer.

As stupid as this sounds, it actually made things easier to talk about. In the third person, you could dissociate yourself from the disease.

For giggles, here is the back story I made up about Bob. I wanted Bob to deserve what was happening so that we wouldn't need to feel any pity. This is entirely fictional.

Bob was not a nice man. He was a bully as a child and tormented his teachers in school. As a young adult he routinely tortured small animals, going so far as to sodomize cats with broomsticks. He was into drugs and would steal from neighbors to finance his habit. One summer when he was 25, he got his neighbors daughter high on ecstasy. She passed out and he raped her. The result was a child born to a 17 year old girl. Bob spent 2 years in jail for statutory rape and has yet to pay one dime in child support. During his time in jail, Bob would routinely beat and molest his cellmate. When Bob was 28 he drove home from a bar after about 10 too many and crashed into a car when he ran a red light. The car was filled with teens who had just graduated high school. All four died instantly. Bob was untouched and fled the scene. Since the car he was driving was stolen, he has never answered for this crime.

This made Bob an easy target. We actually used him in conversation a few times. It's weird how the dumbest, most juvenile things can make a difference sometimes.

My Bone Marrow Biopsy

2008-06-09T19:39:00.000-07:00

I take the day off work since I'm too stressed out. I can barely think straight and can't concentrate for anything. Wendy and I drive up to Dr. Cohen's office for the appointment. Neither of us is really speaking much.

At the Dr's, I get my blood drawn again. It takes forever and I can't figure out why. The oncology nurse actually comes in and inquires about the holdup. I finally get four vials of blood drawn.

When we're called back to the exam room Wendy is allowed to accompany me. We sit and listen while the nurse explains the procedure for us. I will be locally anesthetized at my right rear hip bone. A large needle will be forced into the bone there until it reaches the marrow. Then a small needle will be inserted inside this large needle so that marrow can be sucked out. After this, the large needle will be driven deeper into my bone. The doctor will break off a small piece inside the needle and extract it. The entire procedure should take about 15 minutes.

My face is pale.

The doctor goes over my current blood test from today. My white count is 70,000. Apparently this is good, it hasn't risen too much since Friday. It's likely that I'm still in the chronic phase of the leukemia.

The doctor has Wendy leave the room for her own safety. Apparently the needle is really big and people tend to pass out. I realize that the needle is not out on the table. It's hidden. Dr. Cohen lays me on my back, pulls my pants half off and tells me to roll on my side and face the wall. My right leg is pushed up toward my chest and my ass is covered with a sheet. ("So the nurse doesn't pass out when she comes in", he says. I laugh feebly.) My hands are positioned in front of my face as if I were sleeping.

The lidocaine burns like a bitch going in. The nurse comes in the room to assist, though I can't see anything at this point. My face is practically against the wall. The Dr. says I'm going to feel some pressure. I definitely do. It doesn't hurt but I can feel him pushing this giant needle into my bone. The pressure is quite intense. It sounds like he's using some sort of clamping mechanism to drive the needle in. After a couple of minutes he explains that he's inserting the small needle inside the larger one now. I don't feel anything.

Then I feel the nurse grab my legs and hold me down. The Dr. says, "If anything hurts, it'll be this. Are you ready?" Oh shit, I think, and answer "Yes".

It hurt. It hurt a lot. I describe it as a pain orgasm. Very short, but very, very intense. There were shooting pains down my right leg. If felt as if the marrow were being sucked out of every bone from my hip to my ankle. I cry out, though I'm not proud of it. Then in an instant, the pain is gone and it's like it never happened.

I'm breathing heavily, trying to calm myself down. I feel a little light headed. The Dr. says he's going to shake me around some now. It won't hurt, but I'll feel the pressure. He literally shakes me around by the hip. Throwing me toward the wall, the jerking me back. I can feel the needle in my bone as pressure. He's pushing and pulling and I can feel the strain on the cartilege where my hip bones meet in back he's using so much force.

Finally, he says were done. He bandages me up and helps me sit up. I'm light headed and sit with my head between my knees for a few minutes. Wendy comes in and the nurse gets me a glass of water. I can see the blood and iodine on the paper table cover.

All in all, it wasn't that bad. It's certainly not something I'd like to repeat but except for momentary intense shooting pain, it was more uncomfortable and strange than anything else.

The doctor tells us that based on the blood tests, he's pretty sure that it's cml. The biopsy will confirm this when the results are back. Wendy cries. I'm numb.

I make Wendy take me to get gelatto before we go home.

A Fake Weekend

2008-06-08T16:33:00.000-07:00

So it's not parasites and it's not stress. I spend the weekend putting on a fake smile and false confidence for Wendy. I tell her that they want to see me again Monday for a followup but that the doctor didn't really say much of interest.

She can tell I'm lying but she doesn't say anything.

I look up cml and I'm not encouraged. It's fucking cancer. How the hell do I have cancer? I hardly ever use my medical insurance, I don't even get regular physicals. I'm a healthy, fit, active guy. There's no fucking way I have cancer.

I didn't want to worry Wendy any more than she already was. Being pregnant, the extra stress isn't good for her. Finally, tonight, I broke down and told her I was going in for a biopsy tomorrow and that my white cell count was much higher on Friday. She's says she's coming with me. She has no idea how much that means to me.

My First Visit to an Oncologist

2008-06-06T19:12:00.000-07:00

I show up at Dr. James Cohen's office in Los Gatos, CA. As I walk in the front door a woman who appears to be in her 60's walks past me. She has a head scarf on and it's pretty obvious she has no hair. A cancer patient.

I'm 30 years old and have always been in good health. What the hell am I doing in an oncologist's office?

After the usual administrative nonsense with insurance and HIPAA forms I'm sent to the lab down the hall to have my blood drawn. It takes about 5 minutes and I'm impressed with how skilled the phlebotomist is. It barely hurts and I'm on the way back to the waiting room with a nice little cotton ball taped to my arm where I was stuck.

In the waiting room I contemplate the people around me. I'm easily the youngest person in the room by 30-40 years. What the hell am I doing here?

A few minutes later a nurse calls me back and takes my weight and temperature. I'm shown to a waiting room where she takes my blood pressure and informs me the doctor will see me in a few moments.

When Dr. Cohen pokes his head in he shakes my hand and we head down to this office. It's neat and nicely appointed. All dark wood and daunting, tattered medical textbooks. These are complimented with Harley Davidson paraphenalia and pictures of him riding his Harley.

Dr. Cohen is pleasant enough, soft spoken, a little droll and very dry. In 15 minutes he's quizzed me about my medical history, symptoms, how I got to be in his office, etc. He does a brief physical exam, checking my lymph nodes and spleen for swelling.

He informs me that the blood that was drawn today shows my white cell count at 69,000. That's 20,000 more than it was 2 weeks ago. He says it's likely that I have what is know as "cml", chronic myelogenous leukemia.

Bullshit, I think.

He says they need to schedule a bone marrow biopsy for Monday. I ask him if there is anything I should not do over the weekend.

"Panic", he responds.

Two Long Days

2008-06-04T17:55:00.000-07:00

It takes two days for my doctor to call me to discuss the results. I use this as justification that it couldn't be that bad. If the numbers really meant something medically wrong, they would have called sooner, from the lab even, to let me know what to do. They would not have waited two days or more. I'm fairly happy with this reasoning.

Wendy is still not convinced.

My doctor calls on the phone and says he got the results and I need to get in to see an hematology oncologist immediately. As in the next day. He says the white cell count is too high to be an infection. I convince myself it could still be stress or parasites. In fact, never in my life have I wanted to be infected with disgusting, wormy parasites more. I would welcome them in my stomach or intestines right now. I would feed them well.

My doctor gives me the name of two oncologists to try and make an appointment with. He says to see whichever one will take me first. The earliest his first choice can fit me in is next Friday, a full week away. I tentatively book it and call the second one hoping for something sooner. As much as I fancy loving my parasites, it would be nice to know whether or not I'm actually harboring them. They can get me in on Tuesday, only 5 days away. I take it.

Two hours later, the first choice oncologist calls me back and says that they can get me in tomorrow at 4pm. I guess my doctor called them and they figured it was urgent enough. Now I start to worry.

I lie to Wendy and tell her it's no big deal. They will draw my blood tomorrow afternoon, the counts will be down and we can chalk it up to stress (which sounds better than parasites).

She doesn't looked convinced.

A Bad Test

2008-06-02T15:35:00.000-07:00

This afternoon, after getting home from the ultrasound, we checked the mail and saw that a copy of the blood test results taken on the 23rd had been mailed to us. We thought this a little strange as I opened them to see what they said.

The sheet has 4 columns, the first column lists the count type, the second column lists "good" numbers in green, the third lists "bad" numbers in red, and the fourth lists what the "normal" range is.

The paper had a lot of red on it.

For the medically inclined here are the "Out of Range" numbers (the numbers in parenthesis are the "normal range"):

WBC: 46 (3.8 - 10.8)
RDW: 16.7 (11.0 - 15.0)
Neutrophils: 34 (40 - 75)
Bands: 13 (0 - 5)
Lymphocytes: 13 (20 - 45)
Metamyelocytes: 1 (0)
Myelocytes: 32 (0)
Absolute Neutrophil: 15640 (1500 - 7800)
Absolute Bands: 5980 (0 - 750)
Absolute Lymphocyte: 5980 (850 - 3900)
Absolute Monocytes: 1380 (200 - 950)
Absolute Basophil: 460 (0 - 200)

The pathology review at the bottom of the sheet read:

"The findings may be seen in reactive changes (e.g. infection) chronic myeloproliferative disorder (cml)."

Wendy starts to freak out. She's an occupational therapist and knows a little about medical issues. I had no idea what "chronic myeloproliferative disorder" meant or could be. She won't say it at first, but Wendy thinks I have leukemia. With more disdain than necessary I tell her that's a ridiculous idea.

I go to trusty old google and look up "high white cell count". A few of the hits mention that it could be caused by parasites, high stress or infection. I latch onto infection and high stress. I assure Wendy that when my doctor calls to discuss the results I'll go in for another test and the numbers will be down since I had a couple nights of good sleep on the rozarem.

She doesn't look convinced.

A Good Test

2008-06-02T12:30:00.000-07:00

This morning we went to Salinas for Wendy to have an ultrasound. She was roughly 6 weeks pregnant and since she had miscarried in March around 5 weeks her doctor wanted to check things out to see how pregnancy was progressing this time.

The first miscarriage had been very hard on us. We had been trying for almost a year to get pregnant and were so happy when we found out. We bought books, we browsed furniture, we followed the development of the fetus week by week in the Pregnancy Bible. When Wendy miscarried it was as if the universe had kicked us in the teeth out of spite. When she got pregnant again, we were cautiously optimistic. The odds favored a normal, healthy pregnancy this time. Regardless, we were very scared at what we would see during the procedure.

The nurse was very personable and joked with us. I think she could tell we were nervous. She took the "magic wand" and fished around till - lo and behold - I could see my child! She worked the instrument around a little more and I caught my breath as I could make out the heartbeat. My child's heartbeat. Our child's heartbeat. We both held hands and cried a little at how incredible this was. The nurse did some measuring on the monitor and finally printed out our first baby pictures. We left the office with grins from ear to ear, happy that we would finally be parents.

An Unexpected Beginning

2008-05-26T15:02:00.000-07:00

Some of this will be written in retrospect until I catch up to where things are now, so let's start at the beginning that I didn't know was a beginning...

For most of early 2008 I was having trouble with stress and sleeping. I would get little or no sleep at all 4 or 5 nights a week. On the plus side this meant I got to watch a lot of the trashy television I love so much. On the minus side it meant I was cranky, tired and nearly useless at work. In addition, I would get tired easily and had lost the motivation to do much other than work and watch T.V.

On May 23, 2008 I decided to go to my doctor and see if he would prescribe a sleeping pill for me. I figured if I could just get some rest I might be able to get back on track. On a fluke, he recommended getting a blood test since I hadn't had that done for over 6 years. The lady at the lab drew two vials and I left with a prescription for rozarem.

This was Memorial Weekend, which we usually spend in Chico with family on Lake Oroville. Since the weather was poor and we didn't feel like fighting traffic all the way to Chico, Wendy and I went to Sutter Creek instead for a night at a bed and breakfast and some wine tasting. The sleeping pills made me sleepy, both at night and during the day. Not so great...