Sunday, September 28, 2014

Here we go again !!!

On August 11th 2014 I had an annual PET/CT-scan.  This time the Radiology Report cites a lot of tiny things happening. It concludes:  1) No convincing evidence of local recurrence within the right lower quadrant or retroperitoneum. 2) blah blah blah..............  The upshot is they suggested a biopsy of one slightly enlarged and very slightly "hot" node in my left side. 

Consulting with my new Oncologist, he appeared to be rather new to the staff, he put in a request to have the biopsy done in my local Durango hospital as a convenience to me. Sounded good to me. The Durango service is not VA, so requires a coordination between the Albuquerque external services coordination service and Durango radiology.  RED FLAG !!!

From August 12 till today September 28th,  no biopsy was scheduled in Durango.  I encountered remarkable bureaucratic indifference and worse when I tried to follow the process. First there was a person in ABQ who seemed to drop the ball. Then I found a pro-active person in ABQ who tried to push the request through to Durango.  I called Durango Radiology and was told that 1) they hadn't received the package and 2) the Radiologist would have to review and approve before could call and schedule.  While on vacation I located and called people in both ABQ and Durango and after RE-SENDING package and blah, blah, blah....the ABQ person left a message that she got everything squared away and that the person in Durango would call me when ready. (and to call her if she didn't call). ........... 4 days later...........the Durango person never called me ..... I could not reach the Albuquerque person.  Nothing got biopsy.

I have a meeting with the Oncologist in Albuquerque on Tuesday "to review the results of the biopsy."  I will file a complaint at the VA on Monday and then meet with the Oncologist to reschedule the biopsy IN ALBUQUERQUE ASAP !!!

Monday, November 12, 2012

Had a PET scan on 11/5/2012.   I have a new Oncologist at the very highly overworked VA center in Albuquerque.  They lost 2 of 3 oncologists to the University last year.  I am cautiously optimistic about my current oncologist.  In this last test, there is a very slight increase in size of a couple of lymph nodes, maybe 1 millimeter and a very low "lit-up"reading.  These lymph nodes are in a difficult location in my abdomen, near a major blood vessel, to do a needle biopsy. The doc has ordered a follow-up PET scan in Feb 2013. The long term danger is that NLPHL may evolve into a different kind of lymphoma.   I'm not in panic mode because NLPHL is very indolent and reasonably treatable with follow-up Rituximab treatments.  So far, I am in complete remission for 3 years as of the end if 2012 !!!

Sunday, November 27, 2011

Still in remission!!

I had approx 2 year PET Scan and CT Scan at Albuquerque VA last week. Nothing new!! Still in remission. Had a stomach reaction for several days, probably from the Barium....don't forget to flush that crap outta your system with LOTS of water for a couple of days!

Monday, May 23, 2011

Reflections on emotions

I have reread my blog.  I realize that I did not record a lot of the emotional side of what I went through.  Now I have a close family member who has been diagnosed with Stage III Mantle Cell Lymphoma just last week.  He is going through a lot of the emotions.  I have been helping to be his advocate for the best care that can be found.
I first learned that I had cancer on a Tuesday when I was getting processed through a very routine CT scan for an unrelated issue. BAMM! by Wednesday I was driving home wondering if I had days or weeks to live!! My whole world had caved in.  As the days went by I dealt with my emotions by becoming completely immersed in internet research on the topic. Fortunately, within a week or two, I learned that I was stage II lymphoma with two major clusters in my abdomen.  Emotionally I thought FINE maybe I'll live six months to a year.  I little more time to plan, but my life was still closing in.  I started looking around me and was VERY thankful being a partner with the best woman I've ever known and having a wonderful, supportive family. We are JUST financially OK to  not get terribly panicked about the future.  I started thinking about how I might spend my last year on earth.  By the time had had my actual diagnosis three months down the road, I was LUCKY enough to find that my NLPHL lymphoma could actually be treated for a complete remission!!  Yahoo!!! bring on the treatment.  Now, after a year in remission, I still kinda think that the cancer cells can take hold again and that I may eventually die of this nasty disease.  BUT, I could also die from a piano falling from an airplane.  My experience has left me for the better, bound to enjoy and savor what life I have.

If you work hard to learn everything you can and push for the best, soonest treatment that you can, then you can quickly get to the emotional point where you can feel that you are being treated by the best people and that there is a LOT of possibilities for living a quality life.

Monday, April 12, 2010

No trace of active" cancer !!!

Went down to VA on 3/29 and had PET scan.  Got resutls from oncologist same day.  I have no active cancer.......I think that means that I have a chance of not having cancer again for quite a while, if ever!  We flew on to Alabama for the rest of the week and celebrated the news wirth our new grandson, Knox.

I feel VERY lucky that they found it early and that it was treatable. Stopping by the VA infusion lab and seeing the continuous stream of 30 or so vets that are probzbly a lot less luvky than myself, I felt very humbled.  Cancer ain't like the Super Bowl.  Results aren't final.  I assume that my cancer may rear it's head again in a year or 10 years or 20.  Right now I glad to have the opportunity to regain my strength and go mountain climbing again this summer.  Yahoo!!

I DID get a case of SHINGLES in January that has progressed to the "post healing nerve pain stage."  I was a little angry with the doctors, who did not tell me to be on the alert for the very clear shingles symptoms.  If you know anyone getting cancer treatment and is over 50 or so, they are a prime candidate for shingles, but the severity can be reduced by taking Valtrex before the rash breaks out.  You first feel like you've bruised a rib for a couple of days and then you develop flu like symptons for a couple of days before finally breaking out.  Tell your doc that you want to be ready for Valtrex if you develop the first sysmptom.  I didn't know what was happening.....shingles!  what's up with that! 

Anyway...........I am elated with the healing news and I'm ready to go get life again!

Saturday, January 2, 2010

5 days after #8

Final infusion...for now !!!   I will return for rebaseline PET scan on March 29th.   I would guess that the worst I may have will be a slowly developing new cancer.  The best will be complete cure.  I am doing very well.  It seems like the side effects lesson towards the end of all of these infusions.  I'm looking forewardd to regaining my strength, hiking, traveling, and enjoying family and friends in 2010!!!  

Sunday, December 20, 2009

Two weewks after #7

I've gone through the usual 2 weeks, mostly low energy.  Heading into week 3, I'm feeling good. New Years eve will be 2 days after the final #8.  Roberta and I will watch the Virginia Tech - Tennessee game.  We will be rivals!