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.

Wednesday, June 18, 2008


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

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

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

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

Sunday, June 15, 2008


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

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

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

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

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

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

Friday, June 13, 2008

Telling Wendy It's Official

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

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

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

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

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

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

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

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

"You're kidding," she responds.

No one says anything.

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

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

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

I wish nothing was wrong.


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

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

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


Tuesday, June 10, 2008

Meet Bob

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

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

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

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

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

Monday, June 9, 2008

My Bone Marrow Biopsy

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

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

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

My face is pale.

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

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

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

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

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

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

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

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

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

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

Sunday, June 8, 2008

A Fake Weekend

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

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

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

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

Friday, June 6, 2008

My First Visit to an Oncologist

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

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

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

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

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

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

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

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

Bullshit, I think.

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

"Panic", he responds.

Wednesday, June 4, 2008

Two Long Days

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

Wendy is still not convinced.

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

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

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

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

She doesn't looked convinced.

Monday, June 2, 2008

A Bad Test

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

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

The paper had a lot of red on it.

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

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

The pathology review at the bottom of the sheet read:

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

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

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

She doesn't look convinced.

A Good Test

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

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

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