More Mid-Night Excursions

It's 3am and I am up, wide awake, not sure whether to finish putting yesterday to rest or starting this new one early. But since rolling over and back in my bed has only yielded several puffs of down escaping through a tiny three- corner tear in my comforter creating a little squall of floating feather-kins,  I now sit aimlessly at the computer. Actually Jim is at the office computer, so I am downstairs at another one. Brrrr.   One of our many family quirks is that with five adults living here, there is virtually never a time when everyone is asleep, or for that matter. when everyone is awake. Matt works in Boston 'til 4 am most nights, and Laura is up at 5 am to be at her desk at 7:30. You never have to worry about waking us with a call anytime overnight... it is the 3pm nap that is more likely to interrupt!!

My name is Linda and I have a computer habit. In defense, it has become a reliable (okay, thats an exaggeration)  friend and articulate helpmate. I depend on it to tell me about what food contains the most phosphorous when Jim's count is low, or to show Drew what a wallaby looks like. (for the record, they look like a middle-aged, married Easter Bunny)   My computer has helped me form new perspectives by reading articles in newspapers I would NEVER have been exposed to,  shown me photos of breathtaking beauty, and permitted me to waste endless hours  instant messaging people I could call on the phone in 1/10 the time.  I Google, e-mail, Snopes, "Spacebook" and mine more recipes for gluten-free bread than I will ever use.  And I have barely scratched the surface!  My face is illuminated by the light of the computer many times a day. (What if they designed a tanning feature in the screens... all us pasty computer addicts could stop looking anemic from our strictly vicarious vacations. 'Course I would have to stop leaning my chin on my hand...)

Jim is feeling better since his Monday treatment, and even took me out to lunch yesterday.  The doc wants him to bulk up on proteins, so that is our focus this week.   His appetite has returned somewhat, and the free-fall weight loss has abated. But we know that could change in a heartbeat, so I try to keep up with his appetite for custard pudding.   Even on the worst days, he gets some protein in that.   I would love to avoid those protein shakes as long as possible.  Talk about taking the joy out of living! Wonder if you can make a Sombrero with the coffee ones...  

Biggest bummer for this week is that the Wellness Community of Greater Boston, the mother-lode of cancer support groups and informational classes,  has been forced to close due to financial shortfall.  They were trying to cobble together alternative locations when the national group rescinded their membership.  So now the 1500 cancer patients and their providers who are members are without the "family" the WCGB  has provided for 15 years.    The ripples from the financial debacle just get wider and wider.

 

Been a while since we updated the blog. Actually, the past weeks have been sprinkled with the same ups and downs... great day...then two terrible days... pain, then a short reprieve, pain never in the same place...

Round 6 of chemo has resumed. The initial numbers were not especially great... seemed to be some kidney function loss, which means he needs to concentrate on ingesting more fluids, which seems easy but is strangely hard, they way this all has hit Jim. His blood pressure was worrisomely low when we got to the hospital but by morning it improved. A few days he stays up and gets things accomplished, but more of the time he is in bed asleep. All the ups and downs feel like we are screaming through the Himalayas on a runaway pogo stick.

I am agog that the process of stopping work and getting onto long-term disability and social security and medicare is such a poke in the eye. There doesn't seem to be anyone obvious to help shepherd you through this Valley of the Shadow of Retirement. The websites are confusing and vague, trying to take on all possibilities at the same time.

"If you were an employee of the Commonwealth since before 1986 and currently drive (or have ever owned) a 1999 Honda, and also suffer from amblyopia, you must bring a roller skate key to your local Social Security Administration office on the third Saturday of the month, except in February. We only see people people of Acadian descent with green eyes that day."

BTW, they have NO sense of humor at SSA. I think they absorbed all the cafeteria ladies who got jettisoned from the Registry. Before 1986.

Quick Quote

"Children are unpredictable.  You ever know what inconsistency

 they're going to catch you in next." --unknown

Your Daily Bread

I think I have found a new provocative, infuriating four-letter word.
W A I T.

Seems it is all I do, from waiting for the coffee to be done, to waiting stuck in the traffic that brings the medical district to a total gridlock each and every day, waiting for Jim to be seen, waiting for the therapy to be over, wait for the test results, wait for the transplant.... if all the waiting we all do could be harnessed, there would be no energy crisis. End of vent.

For the moment, our daily commute to Boston is over and Jim is feeling a little better. Still kind of "ehh" but not in as much pain as he was in. The radiation is pretty remarkable stuff. Next week is the "off" week for the chemo so we can just relax a little and get back to the routine stuff.

The following quotes came to me from a source that sends thoughts every day, automatically. My original observation is "The good times make you happy and the bad times make you grow." These were so much in line with my philosophy I had to chuckle.

"In school you get the lesson and then take the test...In life you take the test and then get the lesson. " --unknown source

"When it is dark enough, you can see the stars."--Charles Beard

"The period of greatest gain in knowledge and experience is the most difficult period in one's life." ---Dalai Lama

"Out of clutter, find simplicity. From discord, find Harmony. In the middle of difficulty lies opportunity." ---Albert Einstein

I think sometimes that we are managing as well as we are because a lot of people don't consider adversity to be a part of their daily bread. They see it rather as a razor blade that doesn't belong in their loaf. But a measure of adversity, even quite a lot, is as important as salt is to bread. The sooner that is accepted as truth, the easier life becomes.

(stepping daintily down from her wooden soap box)