Tuesday, May 16, 2006

[Photo: Christmas 2002, Mike and lil' Miss Kylee!]

Today was a sleepy day for Mr. Mike. Once he was awake, he was content and answered appropriately (except for thinking he was at a campground), but man was he tired.

Thanks to one of our favorite techs, Chris, Mike has been hooked up with the person in charge of nutrition at the hospital, which means he's now getting fresh fruit for every breakfast and a salad with every lunch. Since he's going to be there so long, I am so thankful that he's not just going to be dining on shepherd's pie and meatloat every day.

Today I got all the paperwork overnighted to our "second opinion" doctors. After our family meeting with Andrews and Evans, they were very helpful in working with one of the nursing clerks, Judy, to assemble all of our files. Judy was even able to get all Mike's reports from the endocrinologist, opthamologist, and other internal medicine docs. Today, before putting the various packets together with my cover letters, I decide to go through these 80+ page stacks of reports. Unfortunately, somewhere along the way many of the reports got out of order and uncollated. It appears that the surgical reports (the most important docs in this pile to understand what rendered the craniotomy particularly complicated and unfruitful) were originally double sided, and whoever copied them just did page 1 followed by page 3. Then later, they discovered all the page "2s" of Mike's 10 surgeries. Piecing these pack together was a task - fortunately, my mom sat down with me and we got it done in about a half hour.

Uncle Jonathan and Anna left for home (NY state) today. It was great having them here. They also have a style that made for a healthy interaction with Michael, which was nice to see. Mom and dad are planning on leaving tomorrow morning for NH. I think it will be good for me to try to be on my own here - to see that I can do it. I can take care of Bax, get him to daycare, keep the house in order, be Mike's advocate, and carve out a couple of hours each day to work on my research. I actually think this is possible. Especially while Mike is in this holding pattern for at least the next 3 weeks.

Unfortunately, this trying situation proved complicated for my interaction with my parents. It is fair to say that living with your parents while you're 30 years old and husband is sick with a brain tumor is just... difficult. Families have complicated dynamics. Combine that with my releasing the bulk of my frustration on them, their own pain and sadness witnessing their youngest daughter in this awful situation, and the Goldthwaite desire to move towards a solution at a time when no easy resolution exists... made for some tense times. Not all of the times were tense, but a few of them. That being said, I'm proud to say that we had one of the most productive conversations ever this afternoon. So I know we'll be fine. This situation could certainly bring out the worst in a family (which it might have over the past couple of weeks) but it could also bring out the best. The nature of the dialogue today and the promise for better interaction in the future tells me that we will end up in the latter of those camps in days to come.


Anonymous said...

Danna: You do not know me, but I am part of CSz Spokane (my hubby Kasey sarted CSz Spokane in 2001, after we moved here from Portland). Just today I learned of your blog, and of your family's ordeal, from Pat Short of Portland.

Danna, my heart goes out to you. I am moved to tears by your courage and strength and willingness to share what you are going through. I am inspired by your amazing advocacy for you husband and best friend. I am humbled, as a fellow parent of young children, by your grace and loving care in parenting your son. I am honored to have the opportunity to read your blog entries. I will absolutely be praying for Mike and for the success of his treatments, and for lots of "good" days. I will pray for Bax, that he will just continue to be a beautiful reason for both you and Mike to keep going, and that even at his tender age, that Bax can feel and absorb and learn from your unwaivering love and dedication to his dad. I will pray that you have continued strengh, and the ability to, at least sometimes, laugh, because "that's what Mike would want!" I am amazed and inspired by you. Personally, and on behalf of ComedySportz Spokane, I send you all much love!
-Tanya Christie

francine said...

Hi Danna:

You may have already seen this, but I just thought I'd pass on this link to a section from the American Brain Tumor Association's site. There are quite a few pages on care and support of someone with/recovering from a brain tumor, including how to help them re-learn skills or learn to compensate for the loss of some skills. Just thought it'd give you some ideas for when Mike might be ready.


Also, I want to again put out there that I'm more than happy to help out in any way I can. Remember I'm only 5 minutes away from your house and am happy to help with shopping or anything else you think of.

Keep well, Danna, and remember to take time (even a whole day or more each week) just for yourself! :)