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.