I wish it really was Hawaii

While I've been feeling pretty good with this round of treatment, one thing that still happens is that it still makes my face pretty red. Some of the drugs I take do make my skin more sensitive to the sun, but in the picture to the left, I've got a couple of coats of SPF 50 sunblock on. It's not the sun that's giving me the rosy glow. It seemed that it came up in conversations with people (mostly strangers) almost every day last week... "Have you been someplace sunny for vacation?"..."Have you been to Hawaii?" (I wish!)...etc. Well, it's really not much of a vacation, and not one I can recommend. I don't know why I have trouble answering this simple question - I've been this way for over a year. Maybe I don't really want dump the real story on strangers. More than once, the consequence of coming clean on the red face has made people feel bad for bringing it up - of course, how could they possibly have known? I assure them that they needn't apologize, and I hope that my explanation allows them to be comfortable around me. I guess I could just say I got some sun when I was out snowshoeing...

Video clip - Sledding on Mt. Rainier

A quick clarification on the February 21 post regarding the blocking of this blog at the Swedish Cancer Institute. The IT department there is blocking access to this site only for people who are trying to view it from computers at Swedish - they are not blocking access anyplace else. Employees at Swedish can still access it from their home computers. Another end around is to subscribe and the post will get mailed to the email address of your choice (probably even through the Swedish firewall) - just type in your email address at the "Subscribe" button at the website (address is http://haydnprong.blogspot.com/ ).

I also forgot to note that the last set of marker numbers dropped back from the previous level of 14 down to 9.5. This was the first set of numbers after resuming treatment without Avastin. As usual, I will be curious to see what the numbers do this Thursday.

I feel good...

...and that's a good thing. I had treatment last Thursday that for the most part, was pretty unremarkable considering that treatments in the last few weeks have seemed to have some calamity associated with them. The new port has healed up nicely and worked flawlessly. We tweaked the meds a little more so that the queasy stomach that I've been getting in the past few treatments has been fixed. The down side of the new meds is that it means that I get to take the same steroids that keep me wired for a day or two following treatment for an extra two days. My stomach was great, but four sleepless nights might get old over time - but for now, I'm happy for the contented tummy.

It was also nice to have visitors on Thursday - my friend Angela brought her two young sons up to visit - Angela is a fellow patient. I think that the best thing about their visit (besides their Valentines cards) is that one of her boys not only thought that their visit was OK, but that he decided that his bed time book would be "Curious George Goes to the Hospital" and that during their visit to the treatment center, "we didn't die" (his words). It sounds like kind of a strange thing to say at first, but when you're a little kid, the hospital can be a downright scary place - people die when they go to the hospital. I am so glad that I had some part in showing him that the hospital isn't so scary and that when we go there, we are getting treatment to make us get better when we're sick. The boys also got to visit the team of people who have been part of Angela's team - the Resource Center, Radiation Oncology, surgeon and oncologist. We also had a visit from our friends Bruce and Sally, who have been part of our "Thursday Treatment Club" for a while. Our "Thursday Club" schedules are all kind of out of synch with changes in our various treatment schedules so we don't always see each other now. They came to see us even though they didn't have to already be there for treatment, which I think is just wonderful.

Up until now, you have always read in my posts that I've been quite happy with the treatment that I've been getting at the Swedish Cancer Institute. I am still glad that I am getting treatment there, and think that my oncologist and nurses are the best in the world. But I have a beef now - it has nothing to do with my treatment. The folks who manage the information technology resources at Swedish have decided to block access to this blog from the computing system there. In doing so, they have limited the ability of the professionals who take care of me from keeping up with my progress between treatment visits. I realize that they have the right to decide how their computer and bandwidth resources are used in the workplace, but I think that this just seems petty. I'm guessing that other patient blog sites are also blocked when they show enough network traffic, so there are probably others who share my irritation with this censorship. For now, my friends at Swedish can still access this blog from the rest of the civilized world, but maybe the IT folks will come around and change their policy.

I really did feel pretty good with this last treatment round. I felt good enough to go out on a snowshoeing expedition on Tuesday. I haven't been out on my snowshoes since I was diagnosed, so I was a little apprehensive about my ability to be able to hike in the snow. We went up to the Paradise visitor's center on Mt. Rainier to enjoy the nearly 16 feet of snow that has fallen this season. I was a bit out of breath on the short uphill climbing, but it still felt pretty darned good to be out. It was a bright sunny day and warm enough to strip down to shirtsleeves.

It couldn't have been better.

Happy Valentine's Day

A brief addendum to the last post - some of you asked "How big is that port thing anyway?". I should have included something in the picture of my old port that gave some sense of scale. See the photo to the right - it's about the size of a quarter in diameter and about a half inch tall. The new port is a little smaller in diameter, so it's a bit more of a challenge to hit it dead on with the needle.

In my January 14 post, I put in a plug for the Colon Club's clever calendar - the Colondar.
http://www.colonclub.com/colondar.html

The Colondar is kind of a tongue-in-cheek way of promoting colorectal cancer awareness and highlights people who have been diagnosed before the age of 50. I first saw the Colondar hanging in the lab where I have my blood work done before each chemotherapy treatment - I have one hanging in my office. This year's models are photographed in black and white, with blue highlights (blue is the color that symbolizes colorectal cancer, as pink is associated with breast cancer).

Mr. November, Ray Beckler (at right) - is my hero - he's 50 now and has survived four episodes of cancer, and he still looks pretty good.

I confess now that perhaps my plug may have been a bit self-serving, since I was a contestant to be in the 2009 Colondar. I found out this week that I didn't make it this time, but I'm shooting for inclusion in the 2010 edition. The Colondar folks requested prospective candidates to send in a biography and a photo showing what could end up in the Colondar (of course, they have a professional photographer do a real photo shoot).
The photo I submitted is intended to look like this year's models - my daughter shot the photo in our backyard, and believe me, January is not the best time to shoot an outdoor photo with no shirt. I had some help (for which I am extremely grateful) with the color highlighting. Here is the result: We probably shot this picture fifteen times - some were definitely not flattering, but we don't need to go into that now.

It took me a few days longer to recover from my last treatment. It was the first time with the new port, which worked fine, although it was a little sore since it only got installed two days earlier. Treatment itself was uneventful, and now thirty minutes shorter since we are no longer using the Avastin. We've taken Avastin permanently out of the lineup after the TIA episode a few weeks ago. Since Avastin affects initiation of blood vessel growth that would feed tumors, it may also be affecting blood vessels elsewhere in my body, like maybe in my brain. While we couldn't really see any damaged blood vessels in my head, we're not willing to take any more chances. I hate to take one more weapon out of the fight, and I guess we'll see what happens with my marker numbers this week. The number did go back up again last time, to 14, but we only administered the Erbitux in the previous treatment (we limited the treatment at the time since I didn't have a working port, and the peripheral IV in my arms doesn't work very well). It's time for the cavalry to come riding in with a new drug.

Thursday is treatment day again, and it's Valentine's Day. Have a Happy Valentine's Day.