Sunday, December 21, 2008

A Merry Xmas Indeed!

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.

Santa Leu

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

Wednesday, December 10, 2008

Because I've Always Wanted To

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.

Yes, Two Thumbs Up Indeed
(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.

What 120mph Wind Does to Your Face
(Keep your mouth closed stupid...)


Good God It's Pretty From Up Here
(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.

Tuesday, December 2, 2008

Tubthumping

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.

Sunday, November 16, 2008

Best. Week. Ever.

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:
  1. Did Druker come to work the next morning back in 2002 and get heckled in the hallways?
  2. Did insurance companies really deny treatment with Gleevec in the beginning due to the exorbitant cost?
  3. Did someone with CML awaiting a transplant discover Gleevec through this episode in 2002 and change the course of their treatment?
  4. 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.... :-)

Monday, November 3, 2008

Something Goes Well

...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.

Portland From OHSU

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.

Multnomah Pavillion at OHSU

Rather than rehash the entire conversation, here are some high points:
  1. 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.
  2. 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.
  3. 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.
  4. 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.)

Tuesday, October 28, 2008

Off to Oregon

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....

Wednesday, October 15, 2008

A New Normal

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.

Wednesday, October 1, 2008

South of the Border

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'

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.

Tuesday, September 30, 2008

I Love Numbers

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.

Saturday, September 20, 2008

Thank You Team In Training

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:
  1. You raise money for the Leukemia and Lymphoma Society.
  2. This money goes into research for drugs like Gleevec.
  3. This means Gleevec is available to me.
  4. This means my life expectancy is more than the 4-5 years it would have been had I been diagnosed 10 years ago.
  5. Gleevec also means I don't need to immediately undergo a Stem Cell Transplant.
  6. This means I don't need to spend months in the hospital for a procedure that kills 25% of the people that undergo it.
  7. 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.

Friday, September 19, 2008

Creeky Wheels

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. :-)

Wednesday, September 10, 2008

The Sound of Crickets

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.

Thursday, September 4, 2008

An Official Streak

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.

Friday, August 29, 2008

On the DL

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

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

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

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

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

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

Wednesday, August 27, 2008

Benevolent Insurance?

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

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

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

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

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

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

Saturday, August 23, 2008

3rd Time Is A Charm

We've scheduled a "3rd opinion" with Dr. Druker at the Oregon Health & Science University Cancer Institute for Thursday October 30, 2008. The first available appointment was October 23rd, but that's my birthday and I refuse to be in a cancer center on my birthday. Apparently he's one of the leading authorities on CML and Gleevec in the United States. Our main goal for the visit is to get some concrete information on conception while I'm on the Gleevec. It'll be nice to get another opinion on the course of my treatment as well.

I've invited my parents to accompany us on this trip. Hopefully it'll be a positive way to get them involved.

The catalyst for this visit was an email from Jon Gershon, a CML patient from Rhode Island. Even living all the way across the country, Jon uses Dr. Druker as his primary oncologist. He highly recommended a visit based on his experiences.

One of the positive things I found after being diagnosed with cancer was all the support from people who are also going through it, or have already gone through it and come out the other side for better or worse. Both cancer patients and the loved ones of cancer patients seem to have no shortage of love, support and advice to offer.

When I started riding motorcycles I found that most riders feel like they are all part of the same club. Everyone waves to passing riders, we all watch for police for each other (if you've ever seen a rider patting the top of his helmet, he's indicating to other riders to watch for police) and everyone seems to look out for everyone else in general. It's a fun club to belong to.

Cancer is kind of like that. All the members of the club try to provide support and advice to other members. There are get-togethers, special priveleges and we even have our own colors. The difference is being in the cancer club sucks and you'll do anything to get out of it.

Wednesday, August 20, 2008

Adrian

Rest in peace Adrian....

Continuing Ugh

It's been 6 days now since I've been off the couch. The vertigo, dizziness and nausea have made it such that I don't last long sitting upright let alone standing. I don't feel safe driving either, changes in direction cause me to experience vertigo and get a bit disoriented.

I went to the doctor Monday because it felt like my kidneys were going to explode. I didn't sleep at all Sunday night because the pain was so bad. I watched the sun come up and called Stanford as soon as they opened at 8am. They suggested I see my GP, so I got an appointment with him at 11:30am. Wendy left work to drive me up where the doctor drew blood and some other fluid as well as poking and prodding me. All the labs came back normal. At least that meant I could take Advil to tide me over. My only guess is that it is a pretty severe muscle cramp. It's not as bad today but still annoying.

I'm getting sick and tired of feeling sick and tired. I feel useless. I haven't worked, haven't shopped, haven't walked the dog, haven't even really been out of the house. It takes most of my energy and willpower just to get out of bed in the morning. I've been reading other CML survivor experiences and it seems that Gleevec wreaks havoc on you for about 6 months before things even out and you start to feel normal again.

Since Wendy is no longer pregnant, we'd planned on hiking, camping and boating a lot this summer. That hasn't exactly worked out. We've been out once on the boat since July 4th and I can barely make it around the block right now let alone do a hike.

On a much more positive note, Wendy and I have received several cards in the mail that have made our day. One of them told jokes and one of them sang to us. It's so nice to know that people are thinking about us. In addition, my mother-in-law sent us two yoga mats and a yoga DVD from Gaiam. I can't wait to feel good enough to try and fold myself into a pretzel.

The father of one of my best friends from high school happened to be passing through town this morning and I drug myself out of bed "early" (9am) to have breakfast with him and his wife. It was great catching up, I haven't spoken with him or my friend in over 8 years. He had several pictures of his son's wife and new child. They looked very happy in the pictures. I couldn't help but be a little jealous.

Now What?

Wendy and I went to the Fertility Physicians of Northern California (FPNC) clinic on Monday. We wanted them to help formulate a plan that we could follow once I could donate "genetic material". We met with the very thorough, very patient, Dr. Nelson who spoke to us at length about our options.

If I haven't written about it already, the current plan (formulated by the Standford Cancer Center) was to wait until I get into Cytogenetic Remission and stop Gleevec for one month. We would wait for the first two weeks, then donate several "samples" over the remaining two weeks. The idea here is that the Gleevec would be flushed fom my system after two weeks so the donations should be free of the drug. These donations could then be used for artificial insemimation or, worst case, IVF. The average length of time it takes a CML patient to achieve Cytogenetic Remission is 12-18 months. They agreed to test me after 6 months this coming December.

Within the first 15 minutes of our discussion with Dr. Nelson, this plan essentially got flushed down the toilet. According to him, it take 2.5-3 months for a male to generate new sperm. This means that waiting two weeks would, in his opinion, be meaningless. As far as I am aware, being off Gleevec for 3 months is not an option. It's too large of a gamble that you will be resistant when you restart.

This means that we basically have two options now. The first is to roll the dice and conceive while I'm still on the Gleevec. The second is explore options such as donor sperm and adoption.

I can't help but be extremely angry and frustrated that we were told nothing of this before I started Gleevec. I was diagnosed in the chronic phase and waiting 3 or 4 days before starting Gleevec to allow time to bank sperm would have made no difference in the course of my treatment.

We haven't yet decided which direction we're going to go yet. If we decide to conceive while on the Gleevec and the baby has a birth defect, wouldn't that essentially be my fault? If we obeyed the doctor's advice not to get pregnant we wouldn't have condemned a child to life with a disability. On the other hand, we can find no credible study or evidence that conceiving while a male is taking Gleevec has a statistically significant chance of causing birth defects in the child.

It's not a decision I relish, and one that we shouldn't have to make. I'm thinking about making fertility awareness in new oncology patients my "cause". I think it makes sense to educate a newly diagnosed patient about their fertility options with regards to the consequences of their treatment. In some cases, there won't be an option. Sometimes the physician has to act quickly and decisively in order to save the patient's life. There is no time to stop and consider the future of a couple's fertility. This wasn't the case with me.

Wendy and I have a lot to talk about.

Sunday, August 17, 2008

Lucky?

It's hard to feel lucky when you have cancer, but tonight, I do.

I consider myself "saved" in some ways by my GP. If he hadn't ordered a blood test when he did, who knows how long it would have been before the leukemia had been caught? Instead of catching it in what appears to be the early chronic phase it could have progressed to the accelerated phase... or worse.

A good friend of mine lost his father-in-law to CML just last year. His leukemia was caught because he became so ill, and his spleen so enlarged, that he was airlifted to a major hospital. He succumbed to the disease a few short years later.

I've been occupying myself by reading blogs written by other people with CML. It's strange how eerily similar the stories can be in some cases and how divergent they can be in others.

This poor lady is going through the agony of watching her adult son battle CML. Luckily, her son is responding well to Gleevec. Reading through her blog I couldn't help but think of my own mother. I wouldn't wish her pain on anyone.

This young man from England isn't fairing so well. He was diagnosed with AML early in 2007. AML is the acute form of my cancer. Prognosis isn't good for those unfortunate souls that have it. Worse still, one month later he was diagnosed with CML in addition to his AML. To his knowledge, he's the only one in the world with both types. His name is Adrian and he is currently waiting to die. About 1 month ago he was given a few weeks to live. Reading what he has gone through makes me appreciate the relative innocuousness of my cancer.

It makes me a little angry to read or hear that I have the "good" cancer. To me it sounds ignorant and obtuse. There is no such thing as a "good" cancer. And yet, I wouldn't think twice about describing Adrian's situation as "worse". I guess if his can be "worse", then mine can be "good". Everything is relative, and I think I understand now what people mean when they say CML is the "good" cancer. I get to be at home with my wife, take a pill every night and go about my life as best as my fatigued, lightheaded, couch-riding ass can.

I'm worried that my athletic days are over and I'm deathly afraid that I won't get to have children and grow old with my wife. But I have that chance, and it's a good chance.

Fuck that, a very good chance.

Ugh

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

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

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

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

Tuesday, August 12, 2008

Changing Horses and a Good Score

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

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

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

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

Monday, August 11, 2008

A Good Day

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

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

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

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

Sunday, August 10, 2008

Family Support



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

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

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

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

Monday, August 4, 2008

Road Trip!

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

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

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

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

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

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



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


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

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

Thursday, July 24, 2008

Getting Out Of Dodge

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

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.

Tuesday, July 22, 2008

Something Positive

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:
  1. I love my beautiful wife.
  2. My beautiful wife loves me.
  3. My family loves us.
  4. Wendy's family loves us.
  5. We're both successful.
  6. We've been boating this summer.
  7. My brothers are also my friends.
  8. Our dog is pretty cool.
  9. My boss has been more than understanding with the amount of work I've missed.
  10. I've received sympathy cards in the mail. I love mail.
  11. My health insurance is paying for my treatment.
  12. We still have options.
  13. We have good friends.
  14. We like the town where we live.
  15. Things could be much worse.
  16. We have a beautiful back yard.
  17. 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

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?

Monday, July 21, 2008

Hope Dies Anew

Fuck.

We went to Stanford today to talk with Dr. Coutre about what to do with a low white cell count and what we needed to do to get pregnant.

First off my white cell count today is 2,100. That's pretty low. I'm off the Gleevec till it comes back up to normal. Apparently this could take 1 to 2 weeks.

There are three types of responses to treatment for CML. A "complete hematologic response" is when your blood work shows normal cell counts. A "complete cytogentic response" is when there are no marrow cells with the Ph chromosome and no blood cells containing the BCR-ABL oncogene detected by FISH. A "complete molecular response" is when PCR testing reveals no BCR-ABL oncogene-containing cells in the blood.

In short, hematologic is good, cytogentic is better and molecular is best.

Dr. Coutre said that he does not recommend conceiving while on Gleevec. I would need to be off it for at least 2 weeks. In addition, he does not recommend getting off the Gleevec until I have achieved a "complete cytogentic response". This could take 6-18 months.

Fuck.

There is a small chance that I'll be off the Gleevec long enough right now waiting for my cell counts to come back up to normal that we could try this month. That would require us to figure out how to actually go about that within the next 1-2 weeks though. It's a long shot that I'm really not sure we're up to it right now.

That means that, if things go well, Wendy and I can't start trying to have a child again for at least 6 months. Possibly as long as 18 months.

If things go well.

Today has not been a good day. I was assuming I could get off the Gleevec now and figure out how to conceive through whatever expensive magic the local fertility clinic could conjure up. Now we have to wait for up to one and a half years before we can even start trying to have a family again.

This is not fair, and we don't deserve this. We want to start a family very badly. We've already been trying for over year and it's already been a tough road even without the cancer. Now we're on hold.

My Blood Hates Me.

Saturday, July 19, 2008

Another Day On the Couch

Some days I have no energy. Since starting the Gleevec I'm prone to low energy, lethargy, fatigue and light headed-ness. I spent all day today on the couch. We had to cancel dinner with our friends because I wasn't up to it. I've had 4 or 5 other days like this.

Getting out of bed in the morning is getting harder and harder. I rarely get up before 10am anymore. When I do I'm tired all day and usually can't make it through without a long nap.

Sometimes I feel 70 instead of 30.

A Nice Gift


My sister-in-law Ellen sent Wendy a charm bracelet made of orange and clear beads. It has a Leukemia ribbon hanging from it. Wendy wears it all the time now.

Thank you Ellen!

Also, last Tuesday the Phlebotomist apparently infiltrated the vein in my arm. That's when you poke the needle all the way through. I have a massive bruise now. Thank you for this gift.

Tuesday, July 15, 2008

Low White Count

We went to Dr. Cohen's office for a short visit today. Mainly just a blood check up to see how things were going.

My White Cell count is 3,900. Normal range is 4,000 to 10,900. When we visited Dr. Coutre on July 1st, he said that sometimes this happens. When it does you get off the Gleevec until it comes back up to normal, then resume the regular dosage (400mg, what I take now).

Since we'll see Coutre on the 21st we'll ask about what do to with a low count.

Friday, July 11, 2008

Cancer Dog

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.

Tuesday, July 8, 2008

Complications

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.

Monday, July 7, 2008

Hope Dies

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.

Sunday, July 6, 2008

Look Ma, I Have Cancer!

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.

Tuesday, July 1, 2008

Good News and Stanford

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.

Monday, June 30, 2008

Cancer Apparel

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.

Sunday, June 29, 2008

Music and a Wedding

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.

Thursday, June 26, 2008

My Cancer Present

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....

Monday, June 23, 2008

More Side Effects

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.

Friday, June 20, 2008

Side Effects

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.