Discussing Breast Cancer

I have to make a choice! Are you a lurker who wants to read a good breast cancer book? Cast your vote now. I’ll announce the choice tomorrow so we have a few weeks to read the selected book.

How do you tell people that the tears you cry as a survivor walking the track at a Relay for Life event are both joyful and sad? How do you explain that you are both relieved and burdened to be there? How do you convey that you are both proud and regretful that your caregivers are walking beside you?

Last night’s Relay for Life event (in Fairfield, CT) was spectacular; a friend at the American Cancer Society informed me it was their “best” Relay yet, even with the rain, and that it would truly take all night to determine the total funds raised.

Today I’m exhausted but there are a few things I want to share with you immediately:

A researcher from Yale Cancer Center spoke about the ACS grant that was funding her research. She told us that non-defense research funding from the government was way down … and every little bit we can give to the ACS will ensure that cancer research will continue.

There is an entirely new culture of teenagers who are out there making a difference in a tangible way. They cried as I walked the track. They were kind to my children who wore their caregiver sashes. They came up with creative ways raise even more money — one girl carried safety pins and asked people to pin dollar bills onto her shirt so that at the end of the night, when she gave the ACS the shirt off her back, it would be extraordinary. Today’s teens are extraordinary.

Survivors, though we don’t necessarily feel as inspiring as everyone says we are, truly give hope to those who’ve not been stricken with the disease. If we can do it, we reassure them that if they get cancer, they’ll be able to do it, too. We are hope.

Breast Cancer, Relay for Life, American Cancer Society, Survivor, Caregiver

They’re still going on … please vote for this blog for Best Health Blog:

Looks like outdoor sports lovers can also get in on the craze to support the cause. Check it out:

“As part of their commitment to the cause, Ocean Kayak® donates one percent of gross sales from their Venus 10 and Venus 11 kayaks, while Necky® donates in-kind proceeds from the Eliza and Eliza UltraLite kayaks. Since the program’s inception in 2002, Ocean Kayak® and Necky® Kayaks have donated $26,866 to the Breast Cancer Fund and both brands plan to add more kayaks into the program in 2008. “

These are kayaks marketed for women, designed by women … they are all about us. How cool is that? It makes perfect sense for them to support the cause in lieu of their dedication to healthy women.

Here’s a link to a post about the press release!

So I was curious … are their other pink ribbon paddler dreams out there? You betcha.

The Ohio River Way is hosting its fifth annual “Paddlefest” on the Ohio River July 9-10, 2007. And, “Thaxton’s South Fork Canoe Trails, in cooperation with Paddlesports International, will donate their 28 foot Voyager Canoe which will be repainted pink and hold up to 16 breast cancer survivors and patients who will journey 6 miles down the Ohio River on July 10.”

Breast Cancer, Fundraising, Breast Cancer Fund, Kayaks

They’re still going on … please vote for this blog for Best Health Blog:

It’s hard to describe the pain I felt when I became coherent after my surgery (my double mastectomy/reconstruction surgery, for those who are just joining the conversation).

Even the slightest movement pained me. The slightest movement, like breathing.

I was eventually wheeled up to a private room on a floor reserved for women — I didn’t realize the gift that was in the long run. At the time, I was so confused. Why I didn’t have people looking after me and caring for my every need and whim. Honestly, I felt discarded. I was so immobile, so vulnerable, so afraid.

I was afraid the pain would never subside, afraid my blood would clot, afraid an infection would start, afraid I’d never heal, never move again. Afraid …

Well, afraid I’d die from the pain.

Then I realized they weren’t giving me any pain medication yet.

NOTHING.

If I was to advocate for a change in anything related to surgery it would be that transition time between surgery and recovery that are so frightening for the patient. Frightening because nobody is truly in charge anymore. In the OR there are loads of people who know what they are doing. Once you are settled in your room afterwards there is a nursing staff who knows what they are doing. But the transition between the two places needs serious improvement. At least the day of my surgery it did.

I guess there were still pain meds in my system from the OR and that needed to run its course. Whatever, the whole experience had me upset, my husband nearly frantic (his feelings of helpless and lack of control are tabled for a post for another day).

So they get the morphine drip hooked up and things became more manageable. Not the pain, mind you, but the anxiety.

Until my husband finally goes home around midnight (we did have kids desperate to see him in the morning to find out how mommy was remember, their needs came before mine). But that’s when the morphine pump goes empty and the horrible beeping started.

And I couldn’t move.

And it took twenty minutes for a nurse to finally respond to my call.

I suppose that would be another area that needs improvement … that middle of the night nonsense. They come in, they take your vitals, draw blood, all this stuff that wakes you up yet when you need them, they’re nowhere to be found.

I was such a wreck, crying, complaining. I just wanted someone to make the whole thing better for me. But all they did was tell me I’d feel better the following day. So I was anxious for that, anxious to start to feel a difference.

But that difference never came. By morning I was running a temperature of over 102. Something was wrong.

Breast Cancer, Surgery, Mastectomy

They’re still going on … please vote for this blog for Best Health Blog:

Back to Tuesday, May 2nd.

I don’t remember much of my pre-op experience. The anesthesiologist told me he was going to give me something to help me relax before they put me to sleep. I hadn’t stopped crying since I said ‘goodbye’ to my husband and I’m sure they needed me to knock that off.

The meds were was effective, so they said. I personally don’t recall much. Did you know they also give you something via IV that makes you forget those pre-surgical moments?

Seriously … I remember getting on the table, hearing the anesthesiologist explain he was going to give me something to relax … then the next thing I remember is coming out of this dream, begging them not to wake me up, telling them I wasn’t ready, then feeling this horrible scraping in my throat, like they were pulling my guts up through my esophagus. I wanted to wretch but was not yet able to move. I realized after two other surgeries that I’d been intubated and they had to pull that tube out. I also realized it would be a while before the messages I heard in my brain were actually communicated to the rest of my body.

Things happen very quickly post-op. While still in a fog I was wheeled to a recovery area. I still couldn’t move, I thought at first that was medication related. I didn’t realize it was also self-preservation; even the slightest movement would cause such tremendous pain that my brain wouldn’t allow it.

I could barely open my eyes. They were dried out after being closed for so long. I needed Visine. My own was on my bedside table, had been ever since the Tamoxifen started causing my eyes to dry out each night. Now I just had to explain that to someone and that was challenging.

My husband was by my side almost immediately. I later found out my sense of time was way off (yours would be too if you were operated on for so many hours) and I’d actually been in and out of sleep post-op for quite a while before he was allowed to see me.

He scrambled to try to get me Visine but it wasn’t easy without leaving my side. My best friend had some in her purse, but she wasn’t allowed in to see me, and he was hesitant to leave me.

I was doing “as expected” according to the medical staff, but my husband says I was in horrible shape. Of course, he was emotionally wrought after such a long day in the waiting room. And I … I kept saying I seriously felt as if I’d been hit by a train. (I know, it’s cliche — it was all I could muster up under the circumstances. Now, all the times I’d said that exact phrase seemed ridiculously over exaggerated. This was the real deal. I felt as though I was hit by an Amtrak Acela that didn’t slow down for a minute before smashing my unexpecting body into bits.)

I’d later hear from my surgeon that if train wreck victims could be so lucky they’d come out like me. But I was thinking the ones that died? They got the better end of the deal. They didn’t have to experience this type of excruciating pain any longer.

Breast Cancer, Surgery, Mastectomy

They’re still going on … please vote for this blog for Best Health Blog:

I’m just finding out about this (PR people have to get to me sooner): The Beauty Blog Network is sponsoring a ‘Comments for the Cure’ event.

For each comment made from June 4th - 6th … $1 is donated to a cancer related charity. Cool.

There’s even an event t-shirt at Cafe Press.

Here’s a few of the blogs giving specifically to Susan G. Komen:

99 Products
All About the Pretty
Beauty Hatchery
eBeauty Daily
GirlPaint
Mystical Beauty Musings
The Makeup Bag
The Makeup Girl

Hmmm … I could do this, too, though I’m not part of that network. What do ya’ll think?

Breast Cancer, Comments for a Cure, Susan G. Komen

They’re still going on … please vote for this blog for Best Health Blog:

My husband and I arrived at Yale just past dawn on Tuesday morning, May 2nd, 2006. We pulled into the valet parking circle and I couldn’t help but think it would have been so much nicer if we were arriving at a fancy restaurant for brunch instead of the hospital where both my breasts were being removed.

First, we headed to the admission office. Just days before I’d been there for pre-op testing. Now it was time for the real deal. My leaded heart hurt just as much as my caffeine-deprived head.

After we’d check int, we headed upstairs to the surgical floor. We were guided to my cubicle, passing family after family in their own personal cubicles, and I was given a gown to change into. With the curtain pulled closed, I stripped off my clothes, the last bit of comfort I’d feel for days, and sat barely covered in the wanna be lounge chair they provided.

The first thing the nurse noticed when she walked in to check on me was that I still wore my wedding ring. I was purposeful about that, having left off all other jewelry, but my wedding band … “that has to come off,” she said.

That was when the tears started. I handed the ring to my husband and noticed he was filled to the brim with tears as he took them from my shaking hand.

They provided blankets to keep my body as warm as possible as they prepped me for surgery. There were residents with clipboards and nurses with notebooks coming in and out of the cubicle and everyone was checking things off and writing things down and all I wanted to do was sit there quietly with the man I loved.

Then the anesthesiologist came in to start my IV. He was very kind, very warm, and in a way, I wished he’d been as cold and clinical as the minions that had been there before him. His bedside manner made me feel human and important and that opened up the floodgates of fear and anxiety that I’d been working so hard to contain. I nearly exploded with pre-op emotion and adrenalin.

When it was time to get me to the OR he allowed me to sit in a chair instead of lying down on a gurney so that I could see where we were going. My husband held my hand and walked beside me for as long as he could … then the anesthesiologist showed him the waiting room and we had to quickly say goodbye.

I really wish he could have come to that room with me.

Breast Cancer, Double Mastectomy, Surgery, Reconstruction

They’re still going on … please vote for this blog for Best Health Blog:

My parents showed up at the house early so we didn’t have to wake the kids. All three were still asleep in their beds as my husband and I got ourselves ready. I took a shower, the last one I’d take for weeks. I didn’t put on jewelry or make up but I did put on my most comfortable sweats.

I explained to my mom that my oldest needed a snack and a drink and lunch and a drink and my middle child needed a snack and a drink for preschool. I explained that I usually let them choose what they wanted for breakfast; easy on the syrup if they chose waffles, no chocolate milk if they chose a kids cereal.

I explained to my dad the drop off and pick up procedures at the elementary school and the preschool.

I explained my youngest child’s nap time schedule and strategy.

And I cried. I didn’t want to walk out the door. I knew I’d be in the hospital for days, not because of the double mastectomy but because of the reconstruction. The TRAM flap was a huge surgery that warranted a possible five day hospital stay.

I was going to miss my babies. I knew they were going to miss me.

I left a white index card on each child’s pillow with a few easy to read words to express how I love them (so much) and how I’d miss them (so much). I signed it with a lipstick kiss. Long lasting color.

That lipstick is still on those cards still in their dresser drawers one year later.

I couldn’t have coffee so my head started to hurt as much as my heart as my husband pulled out of the driveway and began the half hour drive to Yale.

Breast Cancer, Double Mastectomy, Surgery, Reconstruction

They’re still going on … please vote for this blog for Best Health Blog: