Week 16 and Future Updates.

The week didn't start that well, but ended on an up note.

My last infusion took 5 1/2 hours from time I showed up until I got out of there. In middle of infusion I barfed. That's the first time that has happened, likely because of anxiety I was feeling. (staff had waited for a couple of hours before giving me planned anti anxiety med). Roberta Ando picked me up from this last appointment, just as she had the first, listened to me whine on the way home, and left me with some flowers and gluten free beer to celebrate once I was done with my pills later in the week.Thanks again, Roberta.

Good news is that Doc confirmed that, like PET scan done recently, the last CAT SCAN has shown that tumors had shrunk leaving only a non cancerous cyst on my my kidney. (Cyst is "nothing to worry about" according to my Doc).

BTW--Got bill for PETSCAN that I had done a few weeks ago--$2,100, my copay was $100. So the two PETSCANs alone cost (or were at least "billed' by) Kaiser i $4,000, OUCH, can only imagine what total cost of cancer treatment was, I would guess in excess of $30-40k.

Saturday has come and gone and I have NOW taken my LAST Prednisone tablet--150 of those over the last four months. They are nasty tasting--glad I figured out how to put them into gel caps . Got a good walk in the sunshine to celebrate end of chemo on Saturday. The weather the last week in Portland has been great, a very typical February week of "false spring" leading up to a few more months of clouds and rain, in my experience. But I will take it, it's been a good tonic for my last week of chemo.

Upcoming: Now it's an appointment with my Doc in another month and likely every month for next year. This form of cancer I understand has a high rate of return ('refraction") in first two years and important to monitor frequently. I'm told that blood tests aren't the most important tool for diagnosis of whether cancer has come back. More important I am told is Docs hands on exam of lymph nodes and my reporting of my condition--especially , I think, night sweats, swelling , fatigue.

While I am sure cancer will always be in the back of my mind it's time to get on with my life. I have a few trips planned for this summer, and looking forward to those, dropping some more weight, getting back in shape, and growing my hair back sometime this summer.

Will discontinue weekly posts to this blog but will post after exams , will likely do a "lessons learned" post at some point, and will post PET scans and pics of me with HAIR once that happens. So don't discontinue your email subscription just yet, there is more of this story to come.

Most importantly, thanks to many people who have taken time to call and write, and for those who have been drivers, and friends for many years. The psychological burden of the treatment has been far more demanding than the physical impacts. All of your thoughts and concerns have meant a lot to me and have gotten me through these long winter months.

First Robin, First Flower Blossom.

Pics taken today. See, Spring Really is Coming....

Week 15 Update

Later this morning I go in for my last infusion, and the start of 21 day cycle 6.

Yes!

The weather the last two days has hit 60 degrees with bright sunshine and I have gotten in a couple of walks and have sat in my car, opened the sunroof, and and let the sunshine warm my head as I blasted my IPOD through the car radio.

Last week I saw my first robin, and also saw the first daffodils starting to poke their way through the ground, with blossoming right around the corner.

I'm going to take all of the positive weather/ Spring related developments as a metaphor of improvements to come for me health wise with recognition that, even with the weather, it usually isn't until late June where we can rely on getting continuously decent weather. My recovery will likely take a bit longer than June, but I am looking forward to starting that process.

Week 14 Update

Healthwise, been feeling like a cold is coming on , but otherwise OK this week. [Feb 19th is my last chemotherapy].

Sadly, however, I learned that my former boss and HUD colleaque Dick Brinck passed away from lukemia last week.

Dick served as the Portland HUD Field Office Director for a longer time than anyone else in the nearly 75 year history of the office. He helped moved me along in my HUD career when he selected me as the Housing Development Division Director. Together we made a lot of improvements in both Single Family and Multifamily processing and customer service and had some fun in doing so.

Away from work Dick and I spent lots of lunchtimes and Saturday mornings running, with his nervous energy usually resulting in me struggling to keep up. We were part of a Hood to Coast team, "The running dogs", and we both fondly remember those times, and our fellow team members, whenever we got together.

More recently, Dick and his wife Julie have been especially helpful to me as I worked though my diagnosis, treatment options, and my chemotherapy over the last 6 months. Whether by email or phone I knew they were both pushing for me to help get through this and I am sad that Dick won't here for the completion of my chemotherapy at the end of February. I know I wouldn't have gotten to this point without their help , and the help of others.

Dick was a mentor, a committed public servant, and a good friend.

I will miss him forever.

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.

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!
5. THINK SPRING!
   

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.