The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Saturday, February 5, 2011

Light and tunnels and light

I received all kinds of news this week - news that showed us all what is going on inside me and illuminated a path forward. It all started with Monday's official confirmation that there do not appear to be any bone metastases, and all we need to concern ourselves with is the two liver tumors. So, Tuesday was consumed with outpatient surgery to re-implant a catheter device in my chest that will make it easier (for all) to give my chemotherapy, draw blood for tests, and insert contrast for the many CT scans that I expect to have. For reasons both medical (no existing scar tissue in the vein near my clavicle) and aesthetic (now I will have matching scars on each side of my upper chest), we went with the left side this time. I am not sure that anyone really want to see the yellow green bruise below the port, but Dr. Durning did a fine job!

Wednesday was intended to be a recovery day, with Vicodin making me quite a jolly and nearly pain-free fellow. But, double-bonus for Ed, an appointment opened up in the afternoon with the surgical oncologist at OHSU (Dr. Kevin Billingsley)! Karen drove me up there and we talked to three different doctors (an intern, a resident, and the surgeon) about my case. So many details were reviewed, and reviewed, and reviewed. They wanted to be sure that we talked about the previous cancer treatments, and the current situation, and the risks, and the prognosis. Highlights: (1) no need to do a tumor biopsy, as the information gained would not change the treatment plan at all and we will get that information from the tumors themselves after they are removed; (2) exercise (especially cycling) is good for my well-being during chemo, and should be pursued - but no competitions; (3) chemo will probably be 3-4 months, to get the tumors smaller prior to surgery; and (4) pre-chemo family vacation to Orlando is a good idea.

Thursday was a quiet day, and I enjoyed taking Julia to swimming practice. She really is a good swimmer, and her exercise has a calming influence on all of us. :)

Friday, then, was my follow-up meeting with Dr. Tiffany. She was happily surprised that we had seen Dr. Billingsley, and we discussed all of the details of everything that is going on. I received good news that my genetic markers indicate that I am a candidate for cetuximab (a biological agent that blocks epithelial growth factor receptors on tumor cells - and this helps to discourage their ability to grow). Key side effects are rash (usually on the torso and face - looks like acne!) and diarrhea. Both of those effects will be eased by using Doxycycline and Imodium. The cetuximab will be administered every week, while the FOLFIRI (5-FU, Leucovorin and Irinotecan) are administered every other week. We have many other drugs to manage side effects - maybe I will post about that later? And all of that chemical fun begins first thing on Feb 14.

One last detail that my oncologist is working on has to do with my slightly elevated calcium levels. Since it was not linked to bone mets, she consulted an endocrinologist to learn that I may have a very mild case of hyperparathyroidism. Nothing to worry about now, and the medical indication is to follow it closely with regular blood tests. Well, wouldn't you know it but I have a BUNCH of those scheduled over the next several months.

So, light and tunnels and light. Right now we have a lot of information that explains the blood test results, the CT, and the bone scan. We think we understand what is going on inside me, and we have a solid action plan. But I also find myself feeling like I am going into another tunnel, one with walls that are dripping chemicals, with a path that is strewn with anxiety, sleeplessness, side effects, and cold. A myriad of unlimited opportunities have collapsed to a single path forward for the next several months (if not a whole year), and I am dragging many dear, loved companions with me through the tunnel. I do not know how to thank everyone enough for seeing the tunnel and wanting to walk with me. If sainthood was not proposed for you all in 2007, that cannot be true after 2011.

And there is a small light - way off in the distance - at the end of this tunnel. It seems nearly invisible today, but I know it is there. Thanks to all for helping me to see that light.


CalamityJayne said...

You are not dragging anyone into that tunnel. We are all going with you willingly. You focus on getting better and everyone else will be fine. Karen and Julia have done this before and from what you have told me, have both proven to be quite strong. While it's not a lot of fun for anyone, the main focus is you, you, you. Get used to all the love and positive energy being focused towards you and be selfish for a while. It's OK to do that but you have to give yourself the permission.

Tom said...

Ed Great news that riding is good for your health. We know how good it is for the soul. Am concerned about your description of chemo side-effects. This doesn't portend that you might lose your hair does it?

Anne B said...

The term "informed consent" was invented for patients like you who want to make the best possible decisions based on all available information. Bravo!

Paul said...

Glad to hear that the path ahead is getting clearer and that cycling will be part of your therapy. Pace yourself! And hope you have a great time at the Magic Kingdom. We'll have a gents' night out at Venti's after you get back. Stay tuned for details!

Joe said...

Hey Ed: Here's to the light! Great to hear that the stars are aligning so to speak, and that the docs (not to say anything about ducks) are all in a row as well. Have great fun on the trip, and I hope you get to ride some while you are there.


Sue Smith said...

Thank you for sharing the details of the treatment and your feelings about it, Ed. While you motivation may be to avoid having to repeat the same thing over and over to callers, you are probably also paving the way for some other unfortunate soul who will have to walk the same path themselves or with a loved one. I'm a firm believer that knowing what to expect is a good thing. Have a wonderful time on your vacation!