Wednesday, January 30, 2008

Early Week 13 Update.

I told the Dr. at last infusion Tuesday that instead of getting used to treatments I found that I was dreading each one more than the last. I had this mental image of a revolver with a bullet in it and that each treatment I was spinning the cylinder and was afraid that one day there would be a bullet in the cylinder. Not the most pleasant image to share , but it was what I was thinking.

So it was big relief that I got good news from recent PET SCAN. Tumors have shrunk in size and their is no longer any evidence of hyper metabolic activity, I.E. no evidence of active cancer growth. Caveats are that this is a snapshot in time ONLY , no guarantee that cancer will stay at bay, or if it does, how long it will do so. Have a CAT scan scheduled for next week to see if it confirms positive PET SCAN results. Dr. tells me I will be "peeing out" the dead cancer cells over time. Die you dirty bastards!

Scans with results of this kind after 4 cycles are best one could hope for and generally do indicate better outcomes, with longer remission times than scans that show continued cancer activity at this stage.

As with all cancer stats however, positive PET SCAN results at end of 4th cycle (IE no cancer) are not predictive of individual outcomes, just probabilities. If i get an additional five years, I will count myself very, very lucky, but honestly if it turns out to be less than that I will still feel very fortunate for every additional day I have had, especially once I am off these meds.

My 5th cycle started this past Tuesday. Am now scheduled to start my 6th and final cycle on Feb 19th, with medications completed 4 days after that and complete end of this last cycle 16 days later, on March 11th (far better symbolically than the Ides of March a few days later, although I do have a friend whose Birthday is on the Ides. Thought I forgot didn't you T.K?).

Dr. tells me it takes most people anywhere from 3 -12 months to regain most of their prior energy, so hopefully I can use the summer months to do the work necessary to get that energy back. Have lost a lot of muscle tone in my legs so its going to be slow process to avoid injury while building my base fitness back up. Given alternatives, nice problem to have to deal with.

One unexpected result of treatment is that I have lost about 15 pounds (contrary to what I previously believed most people gain weight), and I will be trying to build on that to lose another 30 after my chemo is over. Gluten free diet cuts out a lot of breads, and anything with flour in it, and that probably is one of reasons I have lost weight. That and the nasty medicine.

Walking the Portland Marathon this year is likely too much to expect, but hopefully I can work up to at least a 10k walk sometime this year.Who knows, maybe i can still be "An [aging] Contenda!"

Thanks again to Barry Wilson for getting me home from last infusion, was happy to share the good news with him first.

PS -Root for the Patriots this Sunday, got a Michigan boy, Tom Brady as quarterback.

Sunday, January 27, 2008

Week 12 Update.

Again , a pretty uneventful week. Of note:
  1. Got PETSCAN done on Friday and will learn/discuss results with my oncologist. Stay tuned.
  2. 5th Infusion starts on Tuesday , a little bit later in the day than usual to accommodate schedules. My friend Barry Wilson will drive me home, he gets a special prize for doing so during rush hour.
  3. Got a total of 6 walks in during past cycle, just slightly below my goal of 7. Have lost muscle tone and cardio, and it's gonna take some time to get it back once chemo is over.
  4. Couple of sunny days this past week. Went to park , read the Wall Street Journal, and got a little sunshine and Vitamin D exposure!

Tuesday, January 15, 2008

Week 10 Update.

Been a pretty uneventful week with only three items worth noting:
  1. Have PET SCAN scheduled a couple of weeks from now, prior to my next infusion. Instructions are to "stay warm" for two days prior to PET SCAN (allows better imaging). I STILL hope to post a PET SCAN video on this site, but have to work through getting an electronic copy from Kaiser).
  2. Steroid Pills--As I said before they are very bitter and taking 5 at a time was making me gag , big time. Went to natural foods store and bought some clear gel caps. Had a pill cutter, so cut pills in half and put them into gel cap. Bitter taste now is GONE! (Sometimes it's the little things that make a big difference).
  3. Got three (short) workouts in the first week and weather looks like it should be sunny for next few days. Good chance I can get to 7 workouts this time around.

Wednesday, January 9, 2008

Infusion Day.

I didn't know what to expect when I had my first infusion, so here's an attempt to chronicle the infusion I had yesterday.
  • Showed up 10 minutes early, waited for 1 hour to get in to be weighed, blood pressure taken and in to see the doctor.
  • Spent 10 minutes with doctor going over any problems during last cycle and me asking her questions about planned scans for end of January. Doctor continues to believe that 6 cycles will likely be best course of action, scans could change or confirm that.
  • Back to reception room, wait for another 20 minutes until taken into infusion area--consist of a row of about 15 recliners and 5 beds.
  • Heat pack applied to left hand to get veins to pop out. Needle stuck in and connected to infusion tube. Doesn't hurt at all.
  • Saline bag started. 5 steroid pills given to take, along with tylenol . Steroid pills are bitter and I gag when I take them.
  • An antihistamine bag is started takes about 20 minutes. Make me very tired , on the verge of sleeping, but NOT. I bring books and newsapers to read but after this I rarely have energy to do so.
  • First rituxin bag given takes about 30 minutes. (The R in RCHOP)
  • Second rituxin bag given, takes 1 hour.
  • I wait for one hour for nurse to come back and start an anti anxiety drug. That takes about 20 minutes.
  • Then the only bag of chemo is infused takes 40 minutes.
  • Simultaneously the remaining three chemicals are injected from a separate line into my infusion.
  • I get my prescriptions on the way out. $61 bucks.
  • Total time 9AM-3:30PM, 6 1/2 hours, two hours plus of which was waiting.This was unusually long , normally I have been getting our right around 1:30.
  • I get home and am pretty worn out . I eat a waffle, no butter, with syrup, take an anti nausea pill, watch tv for a bit and go to sleep. I sleep, with some interruptions/wake ups from about 5 PM to about 4 AM--11 hours.
  • This morning I have taken two anti nausea medications and will shortly take the 5 steroid pills. Will repeat the same over next four days and then no meds unless I need to take the anti nausea plils--I have two types of those
  • Likely need to do only TWO MORE INFUSIONS!

Belated Week 9 Update-60th Birrthday Celebration.

This update is a little late, as I started a new round of chemo yesterday. (separate post on that process upcoming).

I didn't get all of my hoped for walks in this week. I got two and adding in a long day spend cleaning my house I figure I was, in baseball parlance, "3 for 5". That is either a "D" in school or batting .600 in baseball --I like the baseball perspective!

Both my friend Fernando Velez and I were born on "El dia de los Reyes", the Day of Kings, AKA the 12th day of Christmas.

So I was pleased that Fenando and a number of my long time friends were able to join me for a Sunday night birthday celebration at a restaurant in Tualatin (Claim Jumper) that also has a gluten free menu. I have known most of these folks for most , if not all, of the 28 years I have lived in Portland, so it was special for me to celebrate my 60th. birthday with all of them.