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.

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?

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.

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.

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.

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.

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.

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.

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.

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.