Good News.

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.

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:

1. Make sure they are aware of the LONG list of presumptive diseases for Agent Orange related VA disability benefits [See VA page HERE] AND 
2. 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.

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.

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

1. Hey, I made it through a year, that's pretty damn good!
2. 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).
   
3. 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.
   
4. 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).
   
5. 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.
   
6. 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.
   
7. 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).
   
8. 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.
9. 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.
   
10. 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.
    
11. Made a lot of posts on the Housing blog.
12. Have enjoyed serving on two non profit boards.
    

The bad

1. Lost a lot of my 401k/TSP plan by keeping it in stock index fund too long.
2. Didn't lose weight, and in fact has started to regain what I lost during chemo.Ugggh!
3. 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.
   
4. 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.
5. 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).

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.

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....