From the steps of the Capitol

Advocacy days for the Pancreatic Action Network has come and gone.  We got to talk with some of our leaders and everyone seemed receptive to our message: We need the National Cancer Institute to develop a strategic plan (logic model) describing how NCI is going to deal with the increasing prevalance of the most deadly cancer.

MaryBeth insisted that I ride in a wheelchair because of all the walking and despite my grousing, she was right.  I was exhausted just talking at the 5+ meetings we had.

I found that I was in a unique position at Advocacy Days this year.  I am a survivor, but I think I was the only survivor there who was also dealing with an active  recurrence of the disease.  I’m not sure people knew exactly what to do with me.  Do they say congratulations on beating the beast or , “You did it once, you can do it again!!’

The content for the Advocacy Days was essentially the same as last year: try to get you legislators to agree to cosponsor either the house or senate version of the Pancreatic  Cancer Research & Education Act.  Exciting this year is that we got to meet with several of our congressional members rather  than their legislative assistants.

On the health front, it’s just so disappointing that I NEEDED a wheel chair while in DC; or help carrying the bags up t my room.   I said this once already, this round of fighting PC certainly  makes me feel like a cancer patient (but I’m certainly not ready to die yet).  As in the beginning, though, my game plan is pretty much the same:  Take each day and live life to its fullest.  Spend lots of time with the family making memories (and then on the yucky side, MB and I need to do a better job preparing for the future — transitioning from my paying bills to her doing so.

More later


What’s a little pain?

Friday, I had an appointment with Dr. Byas-Smith, who is in charge of the Emory pain management unit.  I spoke to him about the pain in my abdomen and lower back, but also the pain associated with the my edema and the pains in my shoulders..  No one seems terrible concerned about how much water I am retaining.   I have been wearing compression stockings, which help to minimize the swelling of my feet, legs, and thighs.  Unfortunately, when fluid is forced out of one area of the body, it looks for another resting place.  At the risk of sharing too much information….my scrotum has been filling with fluid and by the end of the day, I have a grapefruit sized scrotum.  I have mentioned this to my doctors and they have been indifferent; having some concern about giving me medicine to deal with the edema (because I had been having difficulty staying hydrated).  the Edema is affecting my quality of life.

My shoulder pain is another issue.  From my belly button and lower, I have plenty of fluid.  My upper body, though, is skin and bones.  Dr. Byas-Smith essentially said that my should pain is attributable to a lack of muscle growth.  So another thing i will discuss with Dr. Kauh is perhaps him prescribing some physical therapy (because right now, I am taking 1/2 tab of Methadone for long term pain management and Lortab for breakout pain).  We shall see.  I don’t have an appointment to see Dr. Kauh until 6/23, so I’ll be sending an Email (to which he often resounds to quickly).

In the meantime, MaryBeth and I head to Washington, DC to participate in the Pancreatic Cancer Action Network Advocacy Days.  It will be nice to have some time alone. That notwithstanding, I recall last year meeting several survivors of multiple recurrences.  Maybe hearing their stories will help regenerate how I have been feeling.

More Later,


Vacation Recap

You know the trip to the beach last week went very well.  It was to great see MB’s brother and sister and their respective families.  But I quickly learned that my ability to tolerate long days out walking about and sight-seeing are much more limited than they used to be.

Everyone arrived on Saturday, so Sunday was our first big excursion was to a botanical gardens and betting zoo.  Tuesday (for me) was more resting than anything.  Also, on Tuesday, several members  went beach fishing.  Wednesday, my sister-in-law’s husband went home and we most hung out at the resort pool.  Thursday was exciting; we went shopping (yeah!)  and then I ordered 1/2 bushel of local crabs  (blue crabs to be sure).  I lost tract of how many I ate, but suffice it to say that it was a lot.  The weekend started to slow down; indeed I slept from 11a to 5p Friday afternoon.

I do not like not having the strength to do thinks that, but even today I am feeling rather run down.  So  it was a good visit with family, but my self-realization of my limitations just is further reminder about the progress of my disease.

Getting sick(er) sucks.