Friday, August 30, 2013

Welcome to a Continuing Story

My name is Heather, and I live in the middle-of-nowhere New Mexico. I met my college sweetheart in 2004 and married him in 2009 a year after he was diagnosed with glioblastoma multiforma brain tumor in his left frontal lobe. He proposed the first time when he was in the hospital for his first surgery. I got four proposals in total, so I knew that he really wanted to get married!

Just Married

He had just come back from a work travel trip and the morning after he said that he had a pounding headache and was nauseous, so off to the ER we went (after he uttered a phrase I will never forget: “Do I have to?”). That night the tumor hemorrhaged and he went into emergency surgery to remove a grapefruit-sized tumor. We were all amazed that he regained almost all of his functioning and lived quite well for four years. There were a few more surgeries and LOTS of different experimental and standard treatment.

We got married in 2009, knowing full well that he may pass at any time, but hoping for a miracle. A year later, in 2010 we went out for our anniversary-moon (honeymoon a year after we got married) in Kauai, Hawaii and had a wonderful time hiking, snorkeling, and overall just enjoying each other. We kept up hope that he would permanently this cancer monster, but could see that slow changes were there. We dealt with them as they came, no other way to do it!

In Kauai on our Anniversarymoon

The last year was pretty hard, with loss of a lot of speech and memory, but he continued to work half time until this past Christmas. He was doing fairly well up until December, when his health really started to decline. We spent Christmas with family–in three different cities across the nation. It was a great chance to say goodbye while he was still him.

By February I asked that his parents come down to help me with his care and got hospice care set up. Our local home hospice is very compassionate and nice. We had all sorts of family help all through the time of his decline. He was on so high if a steroid dose that he would regularly have rages for a while, but luckily those were brief, and nobody got hurt more than a few bruises and bruised feelings (for some reason he saved most of his real outbursts for me… I guess I was the safe person to lash out at since I knew what he was dealing with from the steroids).

By the middle of March he was bedbound and unable to communicate at all except to those who knew him well. It got to the point that he couldn’t even communicate with us at all, and I knew that he never wanted to be locked into a shell of a body. April was very difficult, as the family all got together to decide to take him off of steroid treatment. The steroids were keeping him alive, but he was unable to really live.

At the very end we made sure that everyone he cared for had a chance to say goodbye, even if it meant putting the phone up to his ear to let people talk to him in private. He got to hear from his best friend in the whole world the night he died..I wonder sometimes if that was the closure he needed. He passed very quietly, with no seizures or discomfort. His temperature just kept rising until he was gone. But he was ready and we had done everything we could to keep him comfortable.

I had two wakes for him, one right after the funeral and one in late July for those that couldn’t be here for the funeral. It took both fir me to feel that we were done. Also his dad and brother made his grave marker–a large wooden cross engraved and burned with his name. I went up and gathered rocks from the surrounding area and decorated it shortly after the funeral. (This is a large dessert lot, no grass and no maintenance fir the most part, but very peaceful overlooking the mountain and his old school.)

Anyway, I am enjoying having the house to myself but spend a lot of time up with my parents about an hour and a half away. My dad had been coming down a few weekends a month to help me around the house. Since he had lost his first wife at about the same time as I lost Jason. We have really gotten allot closer.

My health has been up and down, and I have had rheumatoid arthritis since 2004. I am, of course, trying to find a new normal, but had a little bit of extra excitement this past week. Couldn’t breathe while laying down on my back, crushing chest pains, and on Wednesday I decided I had had enough of that. I started out with a trip to urgent care (an hour away) on Wednesday that turned into a day-long adventure in the ER. All was fine except for swelling of the sacs around my heart and lungs. That was the culprit for lack of oxygen and chest pains lately. Still waiting to get approved for a new med after a month of fighting with the insurance company. I am pretty much out of options other than going back on old meds in the hopes that my body will have forgotten about the tolerance and work again.

So now I have the fun of 40mg prednisone for the next week to kick down some of the inflammation. Here is hoping that the pred-monster munchies don’t hit too much! (not sure how many of you have had the experience of steroids, but I don’t recommend it unless you really need them!).
I had dropped to 140lbs at the end of April, mostly from not eating while caring for Jason. By this month I had jumped back up to 165lbs and my joints were starting to complain. Since his death I have also been able to eat gluten, like the less stress and 6 years without gluten had reset my system. That is a slight problem as now I can eat all the foods that used to be of limits… croissants, pastries, pizza, bread, did I mention bread? So back on to watching what I eat and finding new normal.

My father is coming down this weekend to help me fix the house up and to get both of us some companion time since my mom works long hours at night. He also lost his first wife at about the same age due to health problems, so we have definitely gotten closer though this journey. My mom is my buddy too, but her hours mean that I go to see her (they both live in the same house, but both are working opposite hours).

I have lots of friends here at home that keep me going and social, even when there are days (lots of them) that I would rather just stay at home in bed and cry my eyes out. Without them and family I would be either institutionalized or worse. His side of the family has adopted me permanently too, so I have LOTS of people looking out for me.

So, hi there! This is me. This is my story. Or at least one part of it.