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 done..........no 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 !!!

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 !!!

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!

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.

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!

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!!!  

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!

2 days after #7

We blew back through Albuquerque on Sunday, 12/6, for chemo on Monday, 12/7,  We were on the road back to Pagosa by 1:00.....just in time to race the blizzard home!  So I'm back to my steroids and neupogen shots for a week.  Low energy, weird dreams will be status quo for the next 6-8 days.  Number 8 on Dec 28th will be the last !

Five days after #6

Doing very well.   Got through 5 days of steroids with only one completelt sleepless night.  The hacking cough has NOT returned !   I'll see if it resurfaces over next couple of days while I'm still taking neupogen type shots to restore white blood cells.  Main issue is very low energy.........I can deal with IT!

We leave on road trip to California on Monday.  Will swing back buy Albuquerque on way home, December 7th  for #7.

Day 1 After #6

Infusion #6 was same old, same old.  Back home first night, steroids wolk me up at 2:00 AM....wide awake till 5:00 AM.  Have moved around slowly all day.  I'm ready for the 5-6 day steroid non-sleep grind!  If that's the worst I got then HEY !     No hacking cough yet.  When I went for infusion I mentioned coughing to infusion nurse and she said that another patient had been given some codiene cough syrup and it worked well.  When the oncologist came by I had a list of all my malidies, including the cough.  She didn't say anything, so I mentioned the nurse's reference to the codiene and asked if I could get some and she said SURE.  You gotta be your own advocate!!  Don't expect a specialist to tend to all of your needs automatically. 

Day 10 After #5

Thursday......after taking last neupogen shot on Tuesday.   The hacking cough and mild bone pain has ceased, very suddenly.  I'm am now sleeping very well.  I woke up on Wednesday morning with a deep dull pain in my lower spine.  Took two over the counter pain pills.... back pain ceased and never returned.

So, as expected, starting with Wednesday PM, all major side effects are gone, except low energy.
I will spend the next week trying to completely recover energy and any lingering remnants of the chest cold that I had.

Day 8 after #5

The chest hacking cough finally subsided enough such that I didn't get out of bed till 5:00 AM last night.  Today is last neupogen shot.  I've got pretty low energy during the day.  Looking for everything to improve starting tomorrow!!

Day seven after #5

I am sleeping much better aftter ending steroids.  Still struggling with chest hacking all night.  Looking forward to seeing how hqacking tapers off after last "neupogen" shot tomorrow evening.  My prediction is that on Wednesday/Thursday hacking will taper off and I'll resume healing of lingering chest cold caught 2 months ago!

Day 6 after #5

Quit steroids on Friday............finally sleeping Saturday night !!! what a relief!  Chest congestion is slowly healing.  I don't really have lungs filled up.  It's like my lungs slowly develop phlegm and I continually cough it out.  When I'm also on steroids, the nights spent awake and coughing are no fun, but I can grin and bear it, knowing that it passes after stopping the steroids.  I'm beginning to feel a little bone pain again, that I assume will abate aftter I stop taking the white-blood-cell-building shots on Tuesday. 

5 days after #5

Have spent 5 days doing steroids, and started white-blood-cell-building shots (8 days).  Major discomfort is steroids keeping me up at night and return of hacking cough intermitently all night.  Last steroid intake was yesterday, so sleeping should start improving.  My theory is that chest cough is remant of cold caught 6 weeks ago.  I think I get a short healing period during 3rd week.  So, I should heal my chest congestion up week after next, just before #6.  Otherwise, I will still be able to pyhsically plug along with window repalcement project starting this weekend....so I can still get around. Looking forward to heading for California to see new grandson the Monday after #6!

Processing Infusion #5

Had #5 on Monday.  Got started by 9:00 AM.  They give me a bunch of pills for side effects, including the first batch of steroid and some benydryl.  Then I get IV drip of Rituxan for 90 min, followed by 1/2 hr drip and nurse "push" of the three other drugs.  I was done by 12:30.  On the drive home back to Pagosa, the benedryl purts me in la la land for about 4 hours. Then the steriods kick in and I I become jitteRy guy for the rest of the night.  The third week reall seems to have restored me to about 90 percent.  The intense coughing due to bronchial tube restriction has subsided. I requested and received an inhaller just incase.  I'm starting back on the one shot per day for 8 days of the white blood cell building drug. We've got some snow and cold in Pagosa till Friday, so Roberta and I will hunker down and watch the World Series (grew up in Trenton, so I'm a life long Yankees Fan).  I feel good!  (If your starting this or know someone, don't forget to use Biotene mouthwash daily, it's great)

Getting back to normal after #4

This is week 3 after infusion #4. I go for #5 next Monday.  Side effects status...........  I had quite a chest congestion last week.  This week I seem to be SLOWLY getting rid of it.  I'm down to a nusance cough that develops when I talk at length.  I stopped in Albuquerque for chest X-ray and consulation last week when I took Roberta down for her flight out to Alabama. X-rays showed clear lungs.  Dr did not alter anything.  Leads me to think I may be developing mildly chronic lung passage condition that may hang on till I'm totally thru with chemo.  With my urging, the doc has decided to go ahead with 8 infusions.  I don't think there's much data on whether 6 or 8 makes a difference for my flavor of cancer.  Since I seem to be handling it well, we decided to go for it.

So, we'll see how  the lung condition goes after next week.  The bone ache in left foor has 95% disappeared. This was a reaction to the neupogen type injections that I take for 8 days post-chemo.  I am developing a very slight tenderness in my gums...hasn't affected eating yet. I haven't lost a pound since starting ( I got the best cook and bottle washer !).   There are a couple of other minor things ....  All of these infirmities just seem to take a LOT LOT longer too heal.  

October/November will speed by. Roberta's son and partner had a baby boy 2 weeks ago and I am a new grandpa TODAY!!  My daughter, Laila, lives near Sant Cruz, CA.  We'll be taking the pop-up camper out for Thanksgiving!

Fourth Infusion

I caught a 48 hour cold on Wednesday before infusion #4.  ended up with slight chest cold, but got about 85% better before Monday infusion on Oct 5th.  Early morning PET scan indicated that tumor "uptake", ie activity had been reduced by about 75%....good news!  Doctor is still mulling whether to go with 6 or 8 infusions.  My 5th infusion will be October 26th, and #6 will be November 16th. We head to California to see Laila's new baby on November 23rd.

A week after infusion, I seem to be plagued with chest congestion, which keeps me up at night.  Taking TheraFlu to help.  ALSO, I was surprised to wake up on Saturday with a severe bone pain in the arch of one foot.  Limp, Limp.........  Taking non-asprin pain reliever seems to pretty well, enough to allow me to continue remodeling job of changing out the windows for a customer.

Final shot of neupogen type drug today (build up white blood cells).  It will be interesting to see if bone pain goes away by end of week.

Surprise Fatigue

It's great to be past that uncomfortable chemo feeling.  It's a tough one to describe if you haven't experienced it.  It's a kinda of weakening churning in the chest and abdominal cavity. Got past that last week, after return from  Lake City.  I felt kind of weak and exhausted on Monday and napped most of the day. Gradually felt much better over next few days. 

On Sunday we climbed Pagosa Peak, about 4,000 ft. above our 8,000 ft home. I've climbed it twice before in about 2 hours.  To my surprise, it took me 4 hours of slow trudging this time. Yikes!!  I'm now realizing that I'm suffering from pretty low energy.  Today I did a simple siding repair for a customer.  Shoulda been a simple 2 hour task.  After 3 hours I was physically exhausted!  So, this is knew.  If I rest and do bookwork I don't notice fatigue.  And I'm eating lots of good food !  Funny that this is starting this far down the road...ready to do 4th chemo on Monday.

On Monday I will also have PET scan to see how it's all doing.

Losing some taste

Had a great weekend in the San Juans. It IS turning to winter here.  This week it will be freezing in the mountains with some snow!  I've got a low energy level going, I think due to the neupogen shots, which I fianlly finished yesterday. 

One odd symptom I'm noticing over the last week is that I am losing the taste of several foods. Last week I noticed that a bunch of wonderful grapes tasted like just water. Hamburger still has the textual taste but the great flavor ain't there.  I was drinking SOBEs last week, but am suddenly repulsed by them.  The very thought of some foods actually starts to make me feel nauseous.  Fortunately, Robeta makes great chili, so I eat a lot of wonderful enchiladas and burritos!  I can still taste a lot of sweet stuff.  I hope it's due to the neupogen and that I will now regain all the lovely tastes!

I hopefully will now recover my strength and tastes over the the next few days and have a great week next week before #4.