Skip to main content

Even in stormy weather...

 Another storm, aka, freezing rain, then sleet, then snow= driving conditions this morning. This equals my 30 minute commute to radiation being 90 minutes today, and me being late. But, white knuckled and all, we made it. Jason was extra cautious due to the accident last week. I was trying SO HARD not to be the passenger seat driver, I did pretty good. The best part of the drive was me and Jason discussing what we would do with our lotto winnings. With my bone condition, and now with my brain cancer, I have the "odds" of catching rare things. SO.... we were talking about investments and such for our millions. We laughed a lot, as Jason was mean and saying I should invest in cigarettes and dolphin meat after I said I'd want to invest in sustainable energy. Always contrary just because. Either way, cross your fingers for me!

We attended the brain tumor support group tonight. Jason said that the support group was "wonderful!" I thought he was being facetious, but no, he found it beneficial. No coercion necessary, I will have a support group buddy. I'm glad he got something out of it, it was nice to have the support, him next to me, and for people in the group to say something, and him and I look at each other and smile or something because we'd experienced a similar moment, or it triggered a little "inside joke" we have. I asked him why he thought it was wonderful, he said it was nice to see this from a different perspective.

I got a ton out of it, and found it really uplifting. This whole brain tumor thing is a very new venture for me, I've only been living with this for about 7 weeks, it was encouraging to meet people who have been living with a brain tumor, or being in complete remission from a brain tumor for 2.... or 7 years! Some were caretakers, some widowers, some survivors, some significant others, etc. It was a small group, but a whole little family or network that are helping each other cope with a "long-term life-threatening illness". I wasn't the only new person, and hearing the in-depth story, or listening to the bits and pieces of others' stories through their advice or encouragement was like being let into someone's world. I am so glad to see that support groups are this cool. I've intellectually studied the benefits of them, and thought they were useful on that level, but as someone who participated, that was a whole new level of beneficial.

They also left me with a binder, it is like the "bible' for caretakers for people with brain tumors. It covers medicines, symptoms, areas of the brain affected and what that means, legal stuff, how to help them at home, medical stuff, what to ask doctors, etc. I breezed through it, it's awesome. I hope that Jason and Lisa will peruse through it, maybe even Brett when he comes.

I had an angry moment today. So, i found out that I won't be losing a whole head of hair (highly unlikely).(This made me mad???) No, I'm just going to lose it where my radiation is, which is going to probably be the whole right side. So I'll have the left side and the back, but not the right side. At first I was like, well GREAT, so glad I chopped all the hair off that could have covered my ginormous bald spot. Now I'm like, whatevs, it'll be a sexy bald spot, AND I'm not losing ALL my hair, well, again, highly unlikely. So, I'll have to figure out some cute "hair styles" or, flat out embrace all the head coverings there are out there.

Today my nurse Lydia, at my radiation, took me to an exam room and hooked me up with 2 hats, a headcover for sleeping, and a bandanna. All freebees! They are yellow, orange, red, and pink... she liked the warm colors on me. I'm rocking the red headcover now, it'll catch all my sexy little chunks. Then I won't have it all over my pillow, shirt, etc. AND I'll look cute. It reverses, and the other side is white and red striped. Jason pulled it out tonight, put it on and said "Where's Waldo?!". So, the jokes continue.

I talked to Brett and my Dad after the meeting. It was good. I'm EXCITED that Brett is coming. I'm ready for him to be here. Something to look forward to. We both are getting giddy about it, watch us fight immediately upon his arrival or something. It would be so us.

So, even in the beginning stages of this storm, we are getting handed some resources, support, and possibly millions! Most of all, I'm getting full-out visual examples of HOPE. One less thing to worry about.

Silly siblings:



After every storm the sun will smile; for every problem there is a solution, and the soul's indefeasible duty is to be of good cheer.  - William R. Alger



Comments

Popular posts from this blog

Butterfly Day

( The title of the last blog post indicated that I needed a simple name for this day. I can't remember if someone suggested it outright, or whether they said something to make me think of it, but either way, the name I now use is Butterfly Day. Torin painted on a picture of a butterfly at school on the very day his mother passed, and his teachers had just so happened to put his name and date on it.) Another year has passed, and it simultaneously seems like a short time and a long time. I do still write letters to Danielle, but just haven't been posting them here. The one I just wrote took a lot out of me, in fact, so this probably won't be a long update. When I took over the blog, one of the things that felt important in continuing this legacy was to document not only the grief process, but the process of healing.  Overall, on a day-by-day basis, I'd say I have come to terms with my loss. By that, I mean that, except for days like today, and on a few rare other occasion...

So this is what the end looks like

Hasn't even been a week this time, and there's more to talk about. Saturday, we hung out. Torin got sick (after three whole days at daycare/"playschool"), so my parents didn't bring him by, as Danielle getting even a cold right now would be not good. Her childhood friend, whom we've become close with again in recent years, had already planned months ago to come to Ann Arbor that day, so she came by at night. We chatted, had some laughs, and it was good. Sunday morning, we were giving Danielle her pills, and one went down the wrong pipe. She wasn't strong enough to cough it up right away, so it was lodged there, causing a lot of discomfort and difficulty breathing. It was scary. I called hospice, and they said "warm sips of water while rubbing her back", so we did that. We think the pill dissolved (at least mostly) after a few hours, but the cough and some wheezing remained. Her friend came by again in the evening, and we established some new stra...

Letter In A Bottle

Today, on what would be her 38th birthday, I wrote a letter to Danielle. It's the first such letter I've written, and it was cathartic. I wasn't sure whether I would just paste it here, or just paste parts of it here, or write something else entirely, but I've decided to share it in its unabridged entirety. It re-treads some ground that I've already covered in this blog, but this was written to Danielle; those were not. Most typos are inside jokes or turns of phrase. Happy birthday, Danielle. I love you. First, foremost, and always. My love for you is unconditional, unquestionable, and unquantifiable. I miss you. Lort, how I miss you. I miss your smile, your wit, your kindness, your grace, your strength, your care, your laugh, your sillies . I miss my partner and companion. I miss my babymama. I miss my wiff. I cry every day. I have a little ritual - my specific time for grieving you. When I put Torin to bed, I play him the last video you made. I can watch the video...