Right now, I’m sitting in the heat, with this hot computer on my lap, and every fan in the house aimed at me while I try to type with just my left hand. My right hand is out of commission and elevated on a pile of pillows.
This scenario is not conducive to getting much writing done – or to adequately being there for the 6-year-old. On days like this, I’m the yell-at-the-kid-from-the-couch mom, rather than the walk-across-the-room-and-address-the-situation-appropriately mom.
The heat doesn’t help with that either.
Nor does the pain.
What’s Going on with My Arm?
It’s recovering from my second bout of cellulitis this summer. Cellulitis is a skin infection that can be life threatening; it also puts me out of commission for a few days with a high fever, exhaustion, chills, and extreme bone and joint pain throughout my body, as well as the pain in my arm. It usually requires a run to the Emergency Room, and overnight or two at the hospital for IV meds.
The cellulitis is a complication of a complication of breast cancer. The cancer got into the lymph nodes, the lymph nodes were removed, I developed lymphedema, and ocassionally develop cellulitis infections from the lymphedema – a few of the many lasting gifts of cancer.
The cellulitis is an acute infection that can be treated with antibiotics; there is no cure for the lymphedema. But there are treatments that are helpful. I would be lost without my physical therapists, and their massages are crucial to helping maintain circulation. Additionally, they taught my husband some of the massage techniques so he can provide some help at home.
The most important tool I have staying ahead of the lymphedema are the various types of uncomfortable, but totally necessary, compression garments.
There are several different types of compression garments that I use, some for sleeping, some for exercise, some for when my arm swells despite my best efforts.
Each of these garments are made to measure, and quite expensive. They must be washed after each use (especially after exercise), so it is important to have alternates, one to wear while the other is in the wash. I can easily wear three different sleeves in a day when I am doing physical work, or in the summer when everything is hot and sweaty, and that doesn’t count the separate garment designed for sleeping.
Each garment is good only for about 6 months before the elastic starts to lose its integrity, and it can no longer compress the way it needs to, so that doubles the amount I need for the year. Then there are the night garments, also made to measure, and the additional wrapping equipment for the inevitable flare.
These sleeves are medically necessary, prescribed by a physician, can prevent life threatening illnesses, and usually not covered at all by insurance, or insufficiently covered. I’m lucky; my health coverage allows two sleeves and two gauntlets (for the hand) a year, plus one night compression garment every two years. It’s nowhere near enough, but it’s something.
For many people, these compression garments can mean the difference between their ability to hold down a job or not. They are that important. Covering the cost of this medically necessary garments can save insurers money by helping to prevent life-threatening and expensive treatments down the line.
There is currently a bill in congress with bipartisan support. I’d like to see if we can keep it alive all the way to the point where it becomes law and can save some lives. The Lymphedema Tratment Act is a federal bill that aims to improve insurance coverage for the medically necessary doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment.
This video explains more about how the Lymphedema Treatment Act, and why it is necessary. I was particularly touched by the story of the little boy. Imagine needing these expensive garments, how quickly babies grow, and all the parents out there know about the inevitable blowouts. How many clean garments must she have needed for each day? That would be devastatingly expensive.
The air is thick, weighty; at times it feels oppressive. This Alaskan girl is not ideally suited for this kind of heatwave.
But I know there are some creatures perfectly suited to the warm air. I’ve decided the best way to deal with this heat is to set aside all the little chores I’ve been stewing over. This is not the time for cleaning out closets or rearranging furniture. There’s no need for meals that require firing up the oven.
All this hot air is a reminder that sometimes I need to prioritize self-care over all the other projects I’ve got lined up.
A few extra showers each day to help stay cool.
Popsicles with my girl.
Naps during the hottest part of the day.
Quiet time with a book while sitting in front of a fan.
This hot season wont last, and it will turn cool again soon. Autumn is around the corner with the frenzy of back to school, followed by the extra time for work that will resume when my daughter returns to school.
The breeze will return.
And the rain.
There will be time for work.
Now is the time for some languid summer rest. This year, I am participating in Susannah Conway’s August Break. Follow the hashtag #augustbreak2015 on various social media to find more posts from participants.
My Cancer Story is a collection of my blog posts and articles about my cancer experience over the years. I decided to pull them all together into one place to make them easy to find.
This turned out to be a much bigger projected than I expected. I’ve cataloged more than thirty here so far, and there are many more to add.
This is a work in progress. I will continue adding the posts already completed as well as the new posts to come, so check back from time to time. Tags are coming soon to allow for searching by topic.
It has been an eye opening exercise to go back through these posts and see how my attitude, perspective, writing style, and my life in general have all evolved over time.
My hope is that these pieces will provide someone with cancer some measure of hope, comfort, and useful information to help them along this difficult road. Even if you don’t have cancer, you just might find this story interesting.
We hold on to each other, we revel in memories, and we pop a bottle of champagne to toast your memory while flipping cancer the bird. We embrace those who are still with us, and carry forward the memories of those who have gone before us.
We are moving. We found a place we love in a neighborhood we love and two blocks from a school that seems like it will be perfect for Gem. We signed the lease a few days ago, and we move in a few weeks.
Now comes the hard part.
The new home we have chosen is small. Tiny. Less than 3/4 the size of our already small apartment. That means that rather than just packing up, every single item we own will have to be considered, judged, and a large portion of them will not be accompanying us in this move. Will the Christmas tree travel with us to our new home? If so, where will it live the other 11 months of the year? We have a total of 2.5 small closets with which to work.
This will be a learning curve.
I’ve been enjoying a number of posts on the tiny house movement; perhaps we could talk the landlord into allowing us to make some modifications to make better use of the space.
In the meantime, Gem is getting excited about the move.
Her jaguar is all packed up and ready to go.
She’s been helping with our packing, as well. If something is missing, there’s a good chance she already packed it for us.
I’ve been in a state of overwhelm lately. It’s not all bad, it’s just a lot. A lot to take in, a lot to think about, a lot to do. And still, I’m supposed to sleep every night? Nah, when everyone else is sleeping is the one time I can think.
I’ve got several posts on back burners in various stages of the editing process and most of them pretty deep. But I wasn’t up for deep today. I need breathing space. Fresh ocean air and plenty of space to breathe.
So I’m sharing it with you.
I’ll be alright, and I’ll catch up with myself soon enough.
This is a sponsored post by me on behalf of Lifescript.com.
After my breast cancer diagnosis, I spent many late nights curled up with my laptop and Dr. Internet, becoming increasingly terrified by the grim prospects offered up by the search engines. I needed information, but I had forgotten that the internet favors sensationalism, so the most extreme cases rise to the top. (more…)