February: short on days, long on dark

This blog, AstroLife Journal, is about what it's like having Brain Cancer in one's life -- whether directly as the patient, or indirectly as a spouse, child, or other loved one. sometimes the content reflects cancer specific episodes, while other times it may just be as mundane as anyone's daily life. The little intermittent dramas between other episodes is mostly where I find this blog today. In some ways our life is no different than others with out a BC diagnosis. We laugh, love, get angry sometimes. But, when we get closer to MRI time, or when the effects of surgery on the brain become apparent, it is hard to imagine that we are very normal anymore. Still, all things being equal, we have got to practice some gratitude, and must be thankful for what we do have in each other, because the quality of life is actually pretty good, comparitively.

February was marked by an increase in grieving, sadness, depression and anxiety over Annie's death. We are definitely mourning the loss of our beloved family member. Every time a train whips by, we think of that tragic episode. Jess now calls it the death train. One of our most immediate reactions was to move away at any cost. But of course these are just feelings, and they pass just as fast as that train. Except, probably for Jess, that train comes a little too often. For me, since I am at work during the week, I get to be distracted, and I get an 8 hour respite from the gloom.

We decided to erect a fence. As a first step, I contacted fencing companies for estimates. Depending on the exact configuration, and design, a new fence could cost between $3,000 - $7,000, for one of these companies to construct it. That doesn't include the survey ($1,200) and county permit ($ ?)

I don't want to lose another family member because of a lack of secure enclosure. Pretty soon, Jake will be running around outside. This really scares the sh*t out of us.

My brother in law in Elko, Nevada, sees signs posted on the road for Border Collie puppies, frequently. And pretty much each time he sees a sign, he calls Jessica to let her know about the opportunity. Each time I heard his message, I told Jessica that I don't think we are ready. However, her will on the matter is greater than my confidence that withholding the opportunity to get a new dog will be better in the long run, and just until we adjust a little and get a fence. My confidence is weaker than her will because I hate to think that I am keeping a cancer patient from experiencing joy, perhaps in the waning years of life, and also our experience demonstrates that although I hope to start new initiatives around the house, rarely do they actually get started (mainly and ironically do to lack of resources like time and money). And, the global recession is a big threat, too. The money we spend on a fence could go to better use either to pay off the credit card, or to an emergency fund (saving up for an 8 month period of unemployment perhaps) So, there seems to be small a conflict here.

No matter what happens, I just hope to be adaptable enough to accommodate the experience. Not everything is about me, today. In fact, with age, I understand that the great majority of things are not about me. So, maybe I should not try to fight the proverbial city hall in my mind. I have petitioned many times to keep the trains from blasting their whistles.

Annie Mae: A loyal companion

Our hearts are broken. Last Sunday, around midnight, Annie slipped off into the black night. Somehow, perhaps in the pursuit of a fox, she was struck by a CSX train. The collision shattered her pelvis, and snapped her spinal cord. Still, she lived until we could find her the next day. After rushing her to the vet's office, we quickly learned that euthanasia would be the most humane action. In a state of unimaginable shock and grief, we said goodbye to Annie for now. We will always keep her spirit in our hearts and minds.

Annie, we love you and we are so terribly sorry for what happened. Thank you for being such a loyal companion to us through the years. You saw Jess through her surgeries and treatments. And you helped welcome Jake home with a green tennis ball. You were always up for a fling of the ball, or a ride in the car to get snootfull of the cool air. Yes, we love you Annie. Please rest awhile, and go herd the great flocks until we meet again.

Christmas time for Jake

Christmas time for Jake

Reprieve for Some Quality Time

A follow up MRI and exam indicates that everything is OK! What a relief! 

Every time that Jess goes in for a neuro-oncology exam, so much anxiety builds up upon itself like a Tsunami, pushing rubble upon water, upon rubble, forcing out all sense of order and direction. Then, in this case, a total calm after nothing bad is found.

These experiences make spending time with each other so much more valuable.

Jake went in for his first haircut this weekend. He was very good natured throughout the entire experience. Mostly, he was curious more than frightened. His barber's forte lied in her ability to calm & entertain her child customers while cutting their hair.

We saved locks of Jake's hair and have it for sale on eBay. Open bid starts at priceless.

Welcome to concierge medicine

In November we received a form letter from a firm called MDVIP on behalf of our family doctor that he is transitioning his practice to a "concierge medicine" model. In other words, he will have to reduce the size of his practice to no more than 600 patients, and each patient will have to pay a $1,500/ year retainer fee up front. This will start December 30, 2008.

The letter stated that the benefits are that the doctor can spend a lot more time caring for each patient. Also, same day appointments would be possible. It went on to explain that he would like to work with each patient in a more holistic way, because studies have shown that this helps reduce hospital visits, and shortens the hospitals stays. Lastly, there would be greatly enhanced medical informatics with beefed up physicals involving very state of the art technology. And every patient would receive a CD with all their medical history so that if we were ever away form the area, and had to go to a doctor, we could see an MDVIP doctor, and just give them the disk --saving tons of valuable time.

The letter invited us to attend an event in Bethesda where our questions and concerns would be addressed. There would be four times all facilitated at he Bethesda Hyatt in one of the meeting rooms.

I went to that event with Jake. There were about 300 people in the audience sitting schoolroom style facing a big projection screen and podium. Jake was the only child in the room.

OK, the benefits sound good. I wish that were the normal care, however. It really ought to be the norm.


This is really crappy timing for us as we are recovering our lives and kind of in a very vulnerable state.

This "concierge medicine" model creates a two-tier access to care => the haves and have nots. Insurance should cover the cost. We could tuck away $3K into flexible spending, but then we would not be able to cover other bills -- several out of pocket medical bills.

Halloween's Treat

Halloween is Jess' favorite "holiday". So, I was so happy that she was actually feeling pretty good. I commented to her that "this was the first time in three years that [she] has felt well enough to participate" in Halloween. I take this as a good omen. So, Jake dressed up like a black cat, and we attended a Halloween hob-nob thrown by a neighbor in the next block, and met a bunch of other neighbors. I had no idea how many children we had in our midst until last night! But we arrived a little late, and we arrived just in time to observe those wild race horses flee the restriction of their gates; other families' kids went bounding from the house to make their respective trick-or-treating rounds. So, the house was practically empty when we walked in, which was nice, because this gave us a comfortable opportunity for quieter times with the hostess and her two little boys who are close to Jake's age. I saw him actually play with her 9 month old which was rewarding. Also, it was good for both of Jake's parents to socialize in a way that is so immediately relevant. Our part time baby sitter also watches the hostess two boys on the days when she is not with us. And sometimes she walks Jake over there for play time. So, Jake was more right at home than his parents, were! The hostess, also a stay at home mother, offered that if Jess wanted to come over --at any time -- with or without Jake, that she is welcome. It seems that after spending so much time sort of couped up --  in cancer treatment mode -- it is a relief to spread out and find people, who live in the neighborhood,  just so friendly, and so generous. Later, Jess and I took Jake to some other neighbors for greetings and candy solicitation. He is so young that he doesn't have a clue. He was a tired little kitty by the time we returned. And so he circled in his crib three times, kneeded his blanky for several minutes, and took a big cat nap.

"I just want to be done with it"

We couldn't make it to Jess' appointment with her neuro-oncologist on Monday. She wasn't feeling well and was sort of freaking out about the prospect of having this disease for the rest of her life -- kind of too panicky to go. She said that she just wants to be done with it. The time and energy commitment itself is staggering let alone the notion that if nothing is done there could be chaos down the road. Add parenting a one-year-old to the mix -- that is a lot of pressure for one person who is still recovering from brain surgery even almost a year later. So, we stayed home. she took a big nap. and I worked from my home office and played with Jake -- who is now walking like a champ.