Week 8 Update

Pattern of starting 2nd week in cycle in a funk and ending it in better spirits seems to be holding. On Friday was feeling good enough to have a [gluten free] rib dinner at Chili's and a lot of laughs with my friend Fernando Velez , so turned out to be a very good way to end the week. Earlier in week had a fun late lunch with my stepdaughter Sahar visiting from NY at another restaurant with a gluten free menu. (What is it with us Irish and potatoes? I had a terrific and huge baked potato with broccoli at that lunch).

Got a couple of walks in during weather breaks this week, and hope to add another 5 in next 10 days so that in 21 day cycle I will have at least exercised 1/3rd of the days, however wimpy the workouts might be. Found my health club membership card and may start doing treadmill walks to get around the readily available weather excuse.

Was having some blood pressure issues and a index finger on right had was a bit numb when I started the week, but those have gradually gone away.

One of my blood tests last time was only slightly above borderline in terms of allowing me to proceed on schedule with chemo. Next cycle for me starts on a Tuesday instead of a Monday because of "El dia de los Reyes", and hopefully the extra recovery day will allow me to proceed on schedule with the next infusion. If not they may need to delay for a few days , or they may have special injection to boost the troublesome blood value. Will be glad to get this upcoming fourth cycle underway, will mean that I will be at least halfway through, and perhaps as much as 2/3rds through the planned chemo regime. Springtime cannot come fast enough for me, I only wish my health would allow me to get to spring training again this year, I could use a couple of weeks in the sun at the end of the winter.

Barney Frank on New Federal Reserve Truth in Lending Proposed Rules.

Classic Barney news release HERE.

Week 7 Summary.

Been a typical week one of new chemo cycle: 1. General tiredness 2. Lack of exercise 3. Oregon rain.

Glad that meds are over for this cycle. Beginning of Christmas holiday this week should begin to improve mental and physical outlook (if only the weather would improve so I get my behind out the door and and walk without the need for swim fins).

Merry Christmas to all!

Week 6 Summary and Some Cancer Statistical Sources.

Good news is that it was a uneventful week. Started coming down with sore throat so had to back off walking a bit, but think I got three short walks in anyway during a period of cold weather. I am going this morning to get blood tests, as prelude to infusion tomorrow and start of round 3 of chemo.

I had indicated earlier that I wanted to make this site more than just about me, by providing information about cancer and cancer treatment. So today I want to share some good sources of cancer statistical information.

Cancer Stats:
The most important thing to keep in mind is that statistics do NOT predict what is going to happen to any one individual, but they CAN give a more realistic snapshot of the incidence of cancer and survival/remission data that goes well beyond stereotypes that "everyone dies" or conversely the equally over generalized "most people now get cured".

Two locations offer the best starting point. The National Cancer Institute HERE, and the very detailed Surveillance Epidemiology and End Results (SEER) data can be found HERE. Today I'm going to focus on SEER data.

SEER data
From SEER, a page leads to state level profile data, available by cancer "site" (type and body organs) HERE. The most detailed information, from SEERS Cancer Query Systems allow users to focus on incidence, mortality, or survival rates and can be found HERE.

Survival SEER data, with an interactive database can be found HERE. It takes some time to get used to making selections properly, but from this database one can narrow searches by site of cancer, age when first detected , race, etc and then extract specific data or charts showing survival rates , typically by period: 1 year, 3 year, 5 year etc.

Five year survival rates for white males in my age group for all stages of Non-Hodgkin's lymphoma (NHL) diagnosed from 1996-2003 was 66.7%. With the same demographics, for testicular cancer the 5 year survival rate was substantially higher at 89.4%. Take away point: the site of cancer can make a big difference in survivability, as can other variables like age, gender etc.

CAVEATS:

1. Advances in chemo for NHL may have improved outcomes since the beginning of the reporting period, survival rates may therefore be somewhat understated
2. More advanced disease stages will have poorer outcomes.
3. Younger ages typically have had better outcomes for NHL, so being in the middle of the range likely improves outcomes at least marginally.
   
4. Repeat after me: Stats do NOT predict individual outcomes.

Week 5 Update: Simple Pleasures.

The week started with me being in not so great health, with my mood matching the foul weather we experienced to start this week.

At the end of the week if there was such a thing as a "Tommy Dealing with Cancer Index" [TDWCI], the headline now would read "Week ends with TDWCI UP a Solid 100 Points".

The reasons for the uptick in the TDWCI are several simple pleasures. During the week:

• I had three housing related meetings where I got to see some familiar faces and engage in housing topics that have been of long term interest.
• I was able to get out and get four solid walks in , the last a 55 minute walk in the bright sunshine of a lazy Saturday afternoon.
• I completed the milestone of completing my 100th Oregon Housing blog post, publishing a list of those first 100 blogs in a PDF file, complete with web link to each one of the posts, HERE.
• The most important simple pleasure of the week is that my hair has grown back the tiniest bit-a centimeter at most. It's quite possible that this new growth will fall out again when I start chemo again a week from now. However, whether that happens or not, the joy of being able to now pat my head and feel this tangible indicator that my body is at least trying to recover is a real reminder of the importance of simple pleasures in our daily lives.

If you have a simple pleasure in your daily life, feel free to add a comment and tell others about it in the space provided. If you don't want to share your thoughts in such a public way, that's totally understandable. The real point is that whether done privately or in public , I can guarantee you will get a smile on your face once you take the time to think about what those surprisingly simple pleasures are in your life.

Week 4 Done.

Good news is that NO repeat of visits to porcelain prayer post this time around, got additional anti nausea drug. Infusion was shorter also, was able to drive myself home after about 4 hours. Have had a generally "sour" stomach and a chemo smell in my nostrils that I can sense but hopefully is not so obvious to others.

Gluten free diet is working well and am thankful for the two markets in my immediate area which have a wide (but expensive) variety of gluten free food choices.

Although 4 weeks are behind me , it still feels like it is going to be a long slog, with anywhere from 14-20 weeks left of chemo and then recovery period after that.Will get new PET scan after 4th round of chemo (around end of January) and that will provide reality check on how effective chemo has been to date.

For mental health, I need to get out and do some walking , but that is currently hampered by 2+ inches of rain in last 24 hours and need to make sure I don't weaken my immune system in the process. Hopefully if I can get out tomorrow that will pick up my mood a bit and get me through this gloomy weather.

Week Three Update: New Cycle About to Start; It's Weird Being Hairless.

Today (Sunday) I go in to get blood tests with results available by tomorrow morning when I start another 21 day cycle of chemo. They will pump meds faster this time so I have some anxiety about that and I am still trying to figure out what to eat before, during, and right after the chemo to avoid day after nausea from last time around. Another change is that I'm going to try driving myself this time and see how that goes. Got to try to figure out how I'm going to do some early Cyber Monday shopping on Chemo Monday , too.

Most notable during past week is my hair loss. While getting ready in the morning is a lot faster since I don't have any hair to wash and blow dry, it's just weird seeing my bald head in the mirror. I have my Detroit Tigers baseball cap for use when I am out and about , but at home i have a "gangsta" type of blue skull cap that I put on my head to keep it warm, even when I go to sleep. No one is likely to mistake me for Rip Van Winkle with that cap on, that's for sure.

The Deed is Done.

I woke up to find that a very slight tug I was pulling out twenty plus hairs at a time, so did a preemptive strike this PM to get a buzz cut. Hit the local SuperCuts and I couldn’t have been in chair more than 2 minutes before it was all gone along with my $15. Had a nice conversation during and shortly after the stylist , she told me her dad had served two tours in the ‘Nam and that she had just spent 30 days there last summer bicycling around from Hanoi all the way to Ho Chi Minh City. She couldn’t convince her dad to go with her, I’m sure he regretted afterwards.

Rubbing my hand across top of my buzz cut it feels like I have a pet again, but the bigger impression when touching is, “damn my head is BIG”.

Heeding a warning in advance from a member of the bald brotherhood, I went out and got some head coverings. I look like a DORK with or without any of them but at least they will keep my head warm.

Here's a top view of how the asymmetrical dome looks without it’s previously almost full head of hair.

My Favorite Cancer Joke.

And it s has been my favorite for a long, long time…

Guy wakes up and is not feeling well. Gets in to see the doctor who after several tests comes back and tells the guy. “I have some really bad news”. Proceeds to tell the guy. “Look, these new tests are 100% accurate. We discovered that you have the rarest and most aggressive form of cancer that we know. Tomorrow morning you will be dead”. I would put your affairs in order and enjoy your last day on earth"..

Guy, understandably, is distraught. Weeps, bemoans his fate, and begins to think about how he is going to tell his wife, who he loves dearly.

Guy finally composes himself and goes home to tell his wife. Sits down with her and proceeds to tell her what doctor has told him. She is beside herself also , loses control and breaks down sobbing.

Guy composes himself once again , holds his wife lovingly and says:

“Honey this is terrible news, but I have been thinking about how we should spend my last hours on this earth and we are losing time here. Remember that expensive restaurant we always wanted to go to, with that extensive wine list? Screw the money, lets go. We will have the best meal of our lives and get that French wine that we always wanted but thought was way too expensive. Then when were done, lets come back home and make wild passionate love ALL night long? How does that sound to you?”

The wife responds, clearing her throat and saying to the husband,:

“Humph! That’s easy for you to say, YOU don’t have to get up in the morning”.

PS -IF YOU GOT BETTER CANCER JOKE, ADD IT IN THE COMMENT SECTION and don't let concerns about "in good taste" get in the way of a really good joke.

Some Animated Humor: YOU Thought you Had Computer Problems?

Remember when I indicated that I hoped that I could humor as theraputic during my treatment? IF this works (send a comment in comment box if it doesn't) this could be the start of several short bits of animated humor.
I don't know why this cracks me up but it does.....

Week 2 Udate: Smooth if Somewhat Odd Sailing.

No real physical issues this week, but an oddity. One of the reported side effects of Prednisone (the “P” in CHOP) is restlessness.

In my case while I didn’t feel restless, I also didn’t apparently feel sleepy. For first time in my life I pulled not an “all nighter” but essentially I went without sleeping from the time I woke up on Saturday until I finally caught about 5 hours of sleep on Tuesday night. (And that sleep only happened after i got a prescription sleeping pill from my Doc). Frankly I felt pretty darn good even toward the end of that period, and I also got a LOT of work done. Go figure...

I also went out and got what is likely to be my last haircut before I start losing my hair , if typical time periods for hair loss during chemo happen for me.

First Week Summary

Day of infusion went fine, day after, not so much. Didn’t get one of nausea medications so spent lots of time at porcelain prayer bowl, leading to loss of fluids, and a late night trip to get an IV to put fluids back in. Since then other than trying to remember when to take which pill, all has been OK. After today no more chemo pills for 14 days, only nausea pills when needed.

Continued thanks to Roberta who bailed me out and got a prescription for me, took me to the IV, home from chemo, and tuned me on to some gluten-free Popsicles too.

Multiple cards, phone calls, and emails from recent and long ago friends and associates "brought the mist" to my Irish eyes more than once this week; thanks to all who took the time to let me know they were thinking of me.

Hope is there are only 17 more weeks of this, could be 23, but at least 1st one is under my belt.

PS--Say thanks to a veteran this weekend, eh?

WEB VIDEO : Elections, Cancer, and The Onion News.

I think I'm going to need some laughs to help me get through the next few months of chemotherapy.

To memorialize/bury this years election season concluding tomorrow, I saved the Onion News Network mock video below to my ITOUCH so I could watch during my first seven hour chemotherapy session. It lightened the mood considerably is all I will say.

Video doesn’t have anything to do directly with cancer , but who cares, it's funny! (Apologies in advance for key frame and the commercial, I had to use the video as is).

BTW, the first session went well, no adverse reactions. Pills the rest of the week, and then two weeks no meds while chemicals do their thing on my bod. Repeat as ordered 6-8 cycles; no doubt much more humour will be required. Suggestions always welcome.

Public Figures with NHL

Courtesy of Wikipedia,several notable public figures with Non Hodgkin's Lymphoma (NHL).

• The former Shah Mohammed Reza Pahlavi of Iran
• Jacqueline Kennedy Onassis, widow of former U.S. president John F. Kennedy
• Gene Wilder, diagnosed in 1999, made a full recovery in 2000
• U.S. Senator Paul Tsongas
• Fred Dalton Thompson, former United States Senator, actor and 2008 presidential candidate
• Hussein of Jordan, former king of Jordan
• Golda Meir former prime minister of Israel
• Ernie Johnson Jr., American sports broadcaster for TNT and TBS
• Jon Lester, Boston Red Sox pitcher