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.

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

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

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.)

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....

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.

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.