Sunday, June 29, 2008

The Dome is No Longer Chrome (And other News).

It's been a year since I retired.

40 years ago this summer I came home on leave from Vietnam and had the best summer of my life with my brother and other friends who had also served in Vietnam. While I knew I had to go back to Vietnam for a few more months after the summer, seeing all my friends and enjoying being alive and 20 years old was quite a treat for me.

On the "alive" theme, it's been about 4 months since my last post so it's time for a little update.My quarterly follow up visit with my oncologist is in a couple of weeks, so I will post more after that meeting. [Had been scheduled for last week, but my car battery died on morning of appointment--and you thought that only happened to you, right?]

In interim, I have had a problem with skin eruptions, a continuation of problems that had been masked by oral medication I had been taking for many years prior to cancer diagnosis. Diagnosis had been that I had gluten intolerance, so since last November i had been on gluten free diet in lieu of medication, but my skin condition didn't go away. The latest tests NOW indicate that after 15 years gluten intolerance diagnosis was wrong, I have another psoriasis related disease,Sneddon Wilkerson disease.

Will be a few weeks before I figure out what treatment plan to follow for that problem, but in meantime I am trying to look on bright side by drinking all the beer, pizza, breads, and other foods that I have had to cut out of my diet since last fall.

Back to cancer recovery. Was surprised by how quickly my physical stamina came back; am up to walking an hour a day for 5-6 days a week, with one of those a longer walk of about 1:20 once a week. I AM in better physical shape than I was before cancer diagnosis, but still nothing to brag about from a guy who use to pride himself on being a regular runner.

Weight is about where it was at end of chemo, but have major push to get down to two bills by end of July from deuce and a quarter last fall when I started chemo and my goal is 1-8-0 by end of year. Am eating more salads than I ever had; and at least for the summer they seem to work for me. Hope that addition of foods with gluten doesn't mess me up.

One of most PLEASANT aspect of last few months has been regrowth of HAIR, everywhere--I lost track of how much I had lost. As you can see in pic below, I am no longer a chrome dome, but my former blond/grey mix is now no mix at all's all GREY. (That was probably going to happen anyway, so I don't attribute it to the chemo).

I have a way to go before it grows out , but for the summer, I am kinda enjoying the short length.

More in a few weeks, enjoy your summer.....

Sunday, February 24, 2008

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.

Thursday, February 21, 2008

First Robin, First Flower Blossom.

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

Tuesday, February 19, 2008

Week 15 Update

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


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.

Sunday, February 10, 2008

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

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.