Tom Cusack Cancer Update

Good News.

noreply@blogger.com (Tom Cusack) — Fri, 09 Sep 2011 11:06:00 +0000

I am very relieved to report that my visit with oncologist went well and that the CT scan did NOT pick up any reappearance of cancer.

Prior to my late afternoon appointment my anxiety grew and in the last few minutes I felt like I was waiting for the jury to come in on my possible death penalty case. Whatever happened, I knew that in a few minutes my life was going to change one way or the other, and it isn't often that kind of dramatic moment occurs.

When my oncologist opened with, " You look as good as your lab tests and your scan", I breathed a BIG sigh of relief. [Funny that I immediately assumed she meant that positively, eh?].

While I still have to deal with an issue with high cholesterol, I have set a new goal of getting to my "fighting" weight of 175 by my birthday 4 months from now, which should help with the cholesterol. After seeing my primary care doc yesterday. I am also starting on a low dose Statin and Aspirin routine.

With a new one year lease on life until my next scheduled scan a year from now, setting modest health goals seems like the least I can do.

It now seems at least possible that my minor "C" health problem will loom as large as the BIG "C" has been for me. If you had told me that 4 years ago after my diagnosis with Stage III Lymphoma, I would have told you that you were crazy.

Thanks again to all of the positive wishes and vibes.

Pre Scan Anxiety.

noreply@blogger.com (Tom Cusack) — Mon, 15 Aug 2011 19:23:00 +0000

Peeps...I realize it has been a while since I posted and I hope this finds you all in good health and enjoying our short summer.

I made a conscious decision not to get CT scans more than once a year as I thought the additional radiation exposure was not warranted unless I was experiencing physical symptoms.

Well, a year has rolled around since my last scan and reading through last years scan report reminded me of the locations of past cancer activity, and leading me to wonder if some of my occasional aches and pains in those locations might signal the return of my cancer.

I suspect this is just normal pre scan paranoia, but I can't help but be reminded of the not so comforting cliche that:

Just because your paranoid doesn't mean your not right.

My next CT scan comes up in a couple of weeks and I have an appointment with my oncologist on September 6th, so I have 3+ weeks of dread ahead of me and then we shall see what happens. [Pic is of one of two packages of powder you mix to drink with what seems like gallons of water the day or the CT scan].

I will of course provide future updates after the 6th, good or bad, but for now am counting my blessings that I so far have survived almost 4 years from first discovering the lump in my neck.

Some Agent Orange VA Disability Advice for Vietnam Vets

It turns out that Agent Orange is a presumptive cause of lymphoma for Vietnam veterans. I figured this out after my treatment, but I filed a VA disability claim anyway and have now been found by the VA to be disabled, albeit with a current "O rating". Small consolation, but should the cancer return I will receive disability compensation upon filing an amended claim. (Generally, VA does not provide disability compensation while lymphoma is in remission unless there are clear "residual effects" from the disease or the treatment).

Based on my experience IF you have a relative or friend who served in Vietnam I encourage you to:

Make sure they are aware of the LONG list of presumptive diseases for Agent Orange related VA disability benefits [See VA page HERE] AND
File a claim with VA if they have medical evidence of any of those presumptive conditions, even if disease is in dormant or early stage. Getting the VA disability determination made, even if it is a "0 rating" will make it much easier/faster to file an amended claim should the disease reappear or become more severe at a later date.

BTW-I have had an excellent experience dealing with the Portland VA office, much better than when I had in Detroit when I got home from Vietnam. Veteran's Service Organizations like American Legion etc are available at VA Office in downtown Portland to help veterans file claims, and dealing with VA actually took less time that getting my medical records from Kaiser.

I plan on enjoying the rest of the summer, and I hope you do also.

Summer 2010 Update: I Am a Shadow of My Former Self, Thanks in Part to Carl's Jr.

noreply@blogger.com (Tom Cusack) — Thu, 01 Jul 2010 21:00:00 +0000

July 4th will mark the start of my 4th year of retirement so this is good opportunity to do a 2+ year update.(Last treatment was March of 2008).

No Evidence of Active Cancer (Can I get an Amen?)

While I haven't had any recent scans, blood work done in May does not indicate any warning signs, although my platelet level is about 20% below the normal low range boundary and my level prior to chemo. At 2 and 1/4 years out I feel lucky to have gotten to this point, especially since this will now be my fourth summer that is free of work pressures. (EYHO).

I Am a Shadow of My Former Self, and Happy About It, Too.

I am pleased to say that the biggest health related development for me is not my cancer, but that I have lost 45 pounds since last October and am back to a reasonable 180lbs., give or take a few.(Would like to get to 175 by end of year).

I accomplished this (duh!) by paying attention to how many calories I take in every day. (Have no idea why it took so long for me to "get" this simple point).

Most days I have stayed below my target of 1,500 calories, or 500 below what is likely my daily need. While 500 calories a day doesn't seem like much it does add up to a pound a week, so in 9 months a loss of 40 pounds is possible.

To keep within my calorie target, I eat salads for both lunch and dinner (if I eat any more I am convinced I would start looking like a rabbit). Other low calorie discoveries have been egg whites, pickles, 20g protein bars, and 100 calorie tortillas with 12g fiber:)

A residual benefit is I have donated a lot of XXL AND some old clothes to Salvation Army, so I have some room left in my closets for first time in a long while, and evidence of former weighty self and my taste in 80's fashion no longer exists.

I Owe it All to Carl's Jr. (Not all of it, but clearly SOME of it).

Surprisingly, the best/cheapest place I have found for quick lunch salads in a pleasant atmosphere has been a Carl's Jr off of I-5 and Boones Ferry road. It has unusual design with floor to ceiling glass walls so it feels light and open even in the winter, and I found it a great place to read newspapers at lunch in a vain hope of keeping them from cluttering my house. This Carl's has good quick service and a friendly staff even though they must be wondering about the guy who has been coming in for months ordering two side salads with vinaigrette dressing, 5+ days a week. (OK, I have snuck in an occasional burger, but not that often). I am hoping to branch out a bit more for lunch, but suspect Carl's will remain part of my lunch regular routine.

I have kept up a pretty good exercise routine of walking and some light work with weight machines, working out 5 times a week during most weeks. I am not going to be running a marathon again anytime soon, but working out helps burn calories, keep the ticker going, and is a big positive psychological boost. (Except for a heel problem I think I could actually run again and that is really exciting to me, but I will likely put off any work on my heel, including any surgery, until the fall).

I continue to post on the Oregon Housing Blog (more than 1,700 posts in 3 years). This summer I hope to get back the Midwest this summer for a visit with family and friends (visit will include some friends from my old public housing project I haven't seen in 30+ years, so that will be a real treat for me).

I need to do some house renovations before I pay off my mortgage in next couple of years, but I think I can dodge working on those chores until the fall also.

Thanks for all of your kind thoughts and deeds over the last 2+ years, they meant and continue to mean a lot to me.

I will try to post if and when there are future developments; I know you will understand when I say I am hoping that won't be anytime soon.

Enjoy your summer and July 4th, my peeps!

Best,

Tom

1 Year Anniversary Post.

noreply@blogger.com (Tom Cusack) — Tue, 03 Mar 2009 02:30:00 +0000

This week is the one year anniversary since my last chemo treatment.(I posted just prior to my last chemo treatment HERE).

(Pic from today I took on my daily walk reminds me of my similar post from around this time last year).

It's been a good year and I'm happy to still be around and kicking. I appreciated all of you kind comments in person or on the web, and thought it was time for a one year update.

The Good

Hey, I made it through a year, that's pretty damn good!
The hair grew back, started as grey and now it's back to normal color. And after many months without ANY hair (if you get my drift) I grew a beard for the first time, too (but it's grey).
Most important of all, saw Obama elected President, and contributed money for first time in my life to a presidential candidate. Still LOVE this video from the Inaugural balls.
Hosted my nephew and his wife for a summer weekend trip to Oregon. Went out to Jake's for dinner and then out to Manzanita on Saturday and Sunday. Weather cooperated and we had a very good time, including hike up Neah-Kah-Nie Mountain.(For me this was like conquering Moby Dick; I had discovered my lymphoma while in Manzanita after getting winded when climbing Neah-Kah-Nie).
I went back to Michigan and saw my mom's grave for the first time (I avoided for a long, long time) in tiny Green Mich on the shores of Lake Superior in the Upper Peninsula. Visited my grandma's farm and was amazed that new owner--a guy from Chicago- had completely renovated it, including barn built in early 1900's. Looked better than it ever did when my grandma was alive.
Also, in the "U.P." I saw my sister and nephew who I had not seen in several years. My sister and I both agreed we are getting OLD, differed on who was aging faster.
From the "U.P" I went down to Detroit and spent some time with the guy I joined the Army with and another childhood friend who I grew up with in "the Herman Gardens"; I hadn't seen either of them for 10+ years. Lots of fun to remember when we were young and [even] dumb(er).
Went to new Tiger ballpark, not as good as old, last time I was there was with Dick Brinck of all people during a HUD conference.
Got a chance to visit the Detroit Institute of Arts and saw the Diego Rivera mural I used to love looking at when I was a kid.
For first time in my life got to Portland Maine, where my dad was born. Got out to the Maine Coast and Arcadia Park Lucky to have sunshine most days in late August and was able to scratch this finally off my must do list.
Made a lot of posts on the Housing blog.
Have enjoyed serving on two non profit boards.

The bad

Lost a lot of my 401k/TSP plan by keeping it in stock index fund too long.
Didn't lose weight, and in fact has started to regain what I lost during chemo.Ugggh!
After about decade, docs decided I didn't have gluten intolerance, but something else, but still taking Dapsone for skin condition. Worried about impacts on my immune system, but only realistic option available.
Housing Blog. I think I am doing it to share information I acquired all these years. Sometimes I wonder if I use it as a crutch to stay away from trying new things; but I really do enjoy understanding how the pieces of the puzzle fit together.
I should do some repairs around the house, but have managed to avoid. Maybe I can get some recovery money!

The Future

I Got's to lose some weight.
Only other trip I really am itching to do is Ireland, need to get cracking on some planning.
Healthwise, the way I look at it is that every day without bad news is good. When I do get bad news sometime in the future (and I am sure I will) I hope I can look back and see that I used the time wisely to get done what I wanted to do.

Cheers to all!

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

noreply@blogger.com (Tom Cusack) — Sun, 29 Jun 2008 20:23:00 +0000

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 ...it'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.....

Week 16 and Future Updates.

noreply@blogger.com (Tom Cusack) — Sun, 24 Feb 2008 12:46:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Fri, 22 Feb 2008 03:18:00 +0000

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

Week 15 Update

noreply@blogger.com (Tom Cusack) — Tue, 19 Feb 2008 13:48:00 +0000

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

noreply@blogger.com (Tom Cusack) — Sun, 10 Feb 2008 23:45:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Wed, 30 Jan 2008 19:15:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Sun, 27 Jan 2008 19:29:00 +0000

Again , a pretty uneventful week. Of note:

Got PETSCAN done on Friday and will learn/discuss results with my oncologist. Stay tuned.
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.
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.
Couple of sunny days this past week. Went to park , read the Wall Street Journal, and got a little sunshine and Vitamin D exposure!
THINK SPRING!

Week 10 Update.

noreply@blogger.com (Tom Cusack) — Wed, 16 Jan 2008 02:38:00 +0000

Been a pretty uneventful week with only three items worth noting:

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).
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).
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.

Infusion Day.

noreply@blogger.com (Tom Cusack) — Wed, 09 Jan 2008 13:42:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Wed, 09 Jan 2008 12:56:00 +0000

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.

Week 8 Update

noreply@blogger.com (Tom Cusack) — Sat, 29 Dec 2007 19:18:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Mon, 24 Dec 2007 13:41:00 +0000

Classic Barney news release HERE.

Week 7 Summary.

noreply@blogger.com (Tom Cusack) — Mon, 24 Dec 2007 12:54:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Sun, 16 Dec 2007 14:42:00 +0000

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:

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

Week 5 Update: Simple Pleasures.

noreply@blogger.com (Tom Cusack) — Sun, 09 Dec 2007 14:20:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Mon, 03 Dec 2007 16:27:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Sun, 25 Nov 2007 16:00:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Wed, 21 Nov 2007 23:26:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Tue, 20 Nov 2007 15:46:00 +0000

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?

noreply@blogger.com (Tom Cusack) — Mon, 19 Nov 2007 16:22:00 +0000

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.

noreply@blogger.com (Tom Cusack) — Sat, 17 Nov 2007 20:46:00 +0000

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.