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.
I learned the hard way that the financial implications of cancer extend well beyond just the cost of medical care. It’s a far too frequent story where jobs are lost, or the hours worked drop below the minimum to maintain health insurance – or pay the rent.
The cost of babysitters alone could bankrupt a family, and then there’s all those extra meals eaten out, and meal delivery services on speed dial, because mama just didn’t have the strength to prepare dinner. Again.
And don’t even ask about the condition of the house. At a time when cleanliness is more important than ever, the strength to tackle that job is tied up in continuing the cycle of breath entering and exiting the body in a timely manner. It’s really hard to scrub toilets while you’re going through chemo.
Paying it forward
Debbie Cantwell was blessed with a strong support system while she was going through her own breast cancer battle, so she decided to pay it forward. From her kitchen table, and armed with determination and inspiration, Debbie started a non-profit organization, the Pink Daisy Project, to help other young women with breast cancer who were struggling and didn’t have the same kind of strong support system to call on.
This is a very small scale non-profit, and the grants to these young women with breast cancer are quite small as well, a few hundred dollars in gift cards or services. Just enough to turn the tide a bit, to get the momentum going again, a lift, a kindness, hope.
How the Pink Daisy Project helped me
The help I received from the Pink Daisy Project while I was going through treatment did all those things for me. I could buy diapers for my baby, and put gas in the car, but it did something more than that, too. By lifting one of my burdens, the gift lifted my spirits. I felt less weighed down. It put a little bit of bounce in my step, my energy level actually improved. Kindness has huge implications in the world.
Every once in a while, I take advantage of the fact that my blog has an audience to tell people about the good work that the Pink Daisy Project is doing. I want to shout it from the rooftops.
But, at a moment like this, more importantly, I want people to consider giving. Financially, times are tough for most of us right now, and that translates into fewer and smaller donations than usual. Of course, the need remains, and applications for assistance keep coming in.
I think its important to note that the money is not just sent out to just anyone. There is an application process, and the stories are vetted. These are amazing, resilient women, who found the strength to ask for help when it became necessary. These are women who take care of others, but at this moment, need some care taking from others. Here is another family that the Pink Daisy Project helped.
This is Shelly and her son:
My name is Shelly and I’m a young breast cancer survivor.
During treatments and surgeries my marriage fell apart, I was unable to work and had another surgery in a week when me and my son had to leave an abusive life. I was terrified!
School was getting ready to start and I couldn’t even get pencils for my son.
Pink Daisy stepped into my life at that point, I received gift cards for Kroger , with those I was able to get all the supplies my son needed! I was also given food cards that helped us to have what little money I had go towards getting utilities turned on and food in our stomachs.
I cried with relief to be able to do these things, my son had already been thru so much, watching me go thru everything with treatments, and lost his world when we had to leave. And PDP helped me help my son thru the most difficult time we ever faced.
Me and my son have plans to help pay this gift forward so other families in same positions can get the help and lifeline Pink Daisy gives! We thank Pink Daisy and all the supporters of this wonderful group with all our hearts!
Please consider giving, or at least sharing this story.
Well, for starters, you end up with some fun pictures…
But more importantly, this event raised money for some pretty awesome organizations.
Get Hitched Give Hope brings together wedding related vendors from around the region, allowing the wedding party to meet the vendors, bid on wedding products and services, and plan their weddings while raising money for a great cause.
Food, wine, flowers, rhinestones, and feathers…
Vendors were there to show off the best of what they have to offer
And the Young Survival Coalition (an organization which has been of immense help to me in my cancer battle) was one of the beneficiaries, along with The Dream Foundation, which grants wishes to adults in the last year of their battle with life threatening diseases.
Such an amazing event. And thanks to all these events in October, we’ve got a good jump on hitting our budget for next year. But I’ve got to admit, I’m thankful that October is over; I’m exhausted, and ready for a two week nap.
Also, I think I’m going to try to get one of those photo booths for all my events in the future. That was fun!
It’s that time of year when the world is washed in pink, and people prance around in their favorite tongue-in-cheek, boob-aware apparel. But how much awareness does all this bring to the realities of breast cancer, and how much does this just turn our attention to boobs?
Don’t get me wrong, I have nothing against boobs. I am pro-boob. I was quite attached to mine, till one tried to kill me. Boobs are awesome, an entertaining conversation topic, they bounce, they feed babies, they’re happy, fun playthings. Breast cancer is the Debbie Downer in the room.
But I can’t wish the pink away, not until we find a better way to fund finding a cure. Unfortunately, not only do we have to endure pink every year, but every year breast cancer survivors go out and parade ourselves around to raise money for breast cancer organizations we believe in. Like it or not, the reality is that many good organizations funding research and programs that help women with breast cancer survive depend on October, on the Breast Cancer Awareness Month, the make the majority of their budget for the upcoming year. And yes, the results of that funding has lead to research that led to treatments that beat back my cancer. And those fundraisers brought in money for breast cancer support organizations that helped me survive my treatments. These fundraisers do make a difference when the money goes to the right place.
So as much as we hate it, we put on the pink and we paste on the smile, because these programs helped get us through it, and now we’re paying it forward so those programs can help someone else. BUT, we’re very careful who we support.
Not everything pink forwards money on to organizations that are seeking the cure, or supporting women with breast cancer. There are so many devious programs out there making money hand over fist selling pink items. Some paint an item pink even though it’s a known carcinogen. Some send no money at all. some just bilk the well-meaning of extra cash. They send $1 to a breast cancer org? Sure, but they bumped the price from $5 to $10 before they painted it pink. That little bit of pink is making them an extra $4 a pop, and you’re buying, not because you need it, but because it’s pink. Sometimes it’s more effective to make a direct donation (also tax-deductable) rather than purchasing something just because it’s pink in October.
Yes, awareness is important. Yes, its the once annual reminder to do the self-exam that we should be doing every month. But we also need to spread awareness that young women, even young girls, can get breast cancer. And men, too. And we can’t stop at awareness.
Unfortunately, there are a lot of amazing women who are dying – and they’ve got all kinds of awareness. Awareness is not enough. We need a cure.
When thinking of banned and contested books, it’s easy to conjure up images of the repression that existed in America during the 1950s. Sure, we’ve all heard of the book burning parties, and we all know that Diary of Anne Frank and Of Mice and Men
were banned back in the day.
But the repression hasn’t ended.
The assault on knowledge and ideas and discussion and diversity marches on. In 21st Century America book burning parties continue, as do attempts at banning books in libraries.
Here is a partial list of the banned and contested books from just this past year.
The irony of book banning is that it’s one of the best ways to get someone to read a book they otherwise might not consider. Read a banned book this week. Check with your local library for more information.
What is your favorite banned book?
I think mine has to be The Handmaid’s Tale by Margaret Atwood. It’s more relevant today than it was when it was written.
I’m still mulling recipe ideas for the O Foods Contest, but in the meantime, I’ll go ahead and post this notice to spread the word.
O Foods Contest for Ovarian Cancer Awareness Month
September is Ovarian Cancer Awareness Month, and for the second year in a row, Sara of Ms Adventures in Italy and Michelle of Bleeding Espresso are hosting the O Foods Contest to raise awareness of this important health issue.
There are TWO WAYS to take part in the O Foods Contest:
ONE: Post a recipe to your blog using a food that starts or ends with the letter O(e.g., oatmeal, orange, okra, octopus, olive, onion, potato, tomato); include this entire text box in the post; and send your post url along with a photo (100 x 100) to ofoods[at]gmail[dot]com by 11:59 pm (Italy time) on Monday, September 28, 2009.
PRIZES for recipe posts:
1st: Signed copy of Dolce Italiano: Desserts from the Babbo Kitchen by Gina DePalma, Executive Pastry Chef of Babbo Ristorante in NYC, who is currently battling ovarian cancer, inspired this event, and will be choosing her favorite recipe for this prize;
TWO: If you’re not into the recipe thing, simply post this entire text box in a post on your blog to help spread the word and send your post url to ofoods[at]gmail[dot]com by 11:59 pm (Italy time) on Monday, September 28, 2009.
Awareness posts PRIZE:
One winner chosen at random will receive a Teal Toes tote bag filled with ovarian cancer awareness goodies that you can spread around amongst your friends and family.
Ovarian cancer is the leading cause of death from gynecologic cancers in the United States and is the fifth leading cause of cancer death among U.S. women; a woman’s lifetime risk of ovarian cancer is 1 in 67.
The symptoms of ovarian cancer are often vague and subtle, making it difficult to diagnose, but include bloating, pelvic and/or abdominal pain, difficulty eating or feeling full quickly; and urinary symptoms (urgency or frequency).
There is no effective screening test for ovarian cancer but there are tests which can detect ovarian cancer when patients are at high risk or have early symptoms.
In spite of this, patients are usually diagnosed in advanced stages and only 45% survive longer than five years. Only 19% of cases are caught before the cancer has spread beyond the ovary to the pelvic region.
When ovarian cancer is detected and treated early on, the five-year survival rate is greater than 92%.
And remember, you can also always donate to the Ovarian Cancer Research Fund at our page through FirstGiving!
Please help spread the word about ovarian cancer.
Together we can make enough noise to kill this silent killer.