Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, January 6, 2011

Staying on the wagon: How I'm recovering from Lung disease

You never know when the last time you do something will be.
You don't visit a friend thinking, "Well, I won't be coming here ever again. I should really look around  and enjoy each moment, the smells, and the sounds."
No one ever goes to their hobby room on the second floor to wrap presents or sew or clean and think, "I may not enter this room again for years. I may live in this very house, but getting to the the second floor will be as hard as crossing the Sahara desert."
But this happens.
Everything is left mid action, a shadow of a ghost that once actively played there. The room, the house, or even a desk is left telling a story of an unfinished project or a goal that was left unmet.
But no one ever knows when that time is coming. There is no way to prepare.
I didn't realize in August 2009 when I first started to experience shortness of breath that none of my activities would ever be the same afterwards.
I remember wanting so badly to coach soccer. I got out of my chair and showed one girl "hot touch" on the soccer ball, quickly jumping from foot to foot and placing my toe on the ball.
I stopped quickly. I felt my chest getting heavy and my throat closing in. I started to sweat. I started to see black and quickly sat down, thinking, "I absolutely can not pass out in front of the kids."
I didn't know then that I would not exercise for years afterwards or that "exercise" would consist mostly of rehab with small babysteps.
Bronchiolitis Obliterans with right sided pneumothorax
post bone marrow transplant.
 First, I had to overcome the immediate threat to my life with scans, biopsies, a pneumothorax only to finally diagnose bronchiolitis obliterans, or graft vs. host of the lungs from my second transplant, then I had to gain the strength to breath pain free, to cough, or laugh. I'd gone a long way from playing soccer.
I used to dance almost every night through the first years of my cancer, not only to exercise, but to keep my spirits up.
 With my new struggles, I had to start learning to walk with an oxygen tank at a pace I could sustain. I had to manage getting to the car. I had to learn to manage getting my son ready for school. I had to ask and train him to scrape the ice from my car.
I could hardly lift the 10lb. oxygen tank. I could barely lift my legs in the boots I'd worn for years.
I guess you could call this "exercise," but not by my definition.
I tried to find other hobbies to fill the void. I took a pottery class and threw myself into art, but even when still suffering from severe bouts of respiratory distress I'd push myself to at least pitch to Xander or pass the soccer ball. None of my new activities appealed to him like the sports we used to play, but the days of jumping on the trampoline or teaching him ball handling skills were over.
Or so I thought.
Today I FINALLY, after years, brought out my old "Flirty Girl Fitness" video! That is bonafide exercise, even though I didn't even complete the warm-up.
It's been a long road and a struggle that consists of more obstacles than just my physical problems from cancer, chemotherapy and bronchiolitis obliterans.
I had to face the psychological fear of losing control, losing my breath, having the world turn black and losing my faculties, possibly in front of my child, but I knew it was my only hope to enjoy life the way I wanted to.
The road to recovery began when I'd finally started to accept my state. I'd purchased a wheelchair. I bought a better bag to carry my awkward oxygen tank along with my medications and money, etc.
I knew I had farther down to go. I didn't want to go there.
With X as my motivation and an excited blessing from my pulmonologist and transplant specialist, who both said exercise maybe the only way to improve my functional activities, even though it would not improve my test results, I started slowly.
X and I would play "wall ball" kicking a soccer ball against the side of the house. I would walk slowly and kick then sit on the tailgate of my jeep. I didn't run, I didn't chase. If the ball didn't come directly to my feet, I would leave it.
Two kicks at the wall slowly turned to three then four. Then I started to take a couple steps sideways to move towards the ball, walking in a careful calculated manner. At this time I would start getting short of breath, but I'd stop and regroup.
I began to force myself to walk longer distances knowing that at some point I could reach exhaustion and collapse. I learned to take my body to a point I was comfortable with and then rest.
After a month- 6 weeks I could finally kick back and forth with some strength and I added a little hop to my step.
The first time I tried to "run" to the ball (that's means taking two quick, strong steps towards the ball) my leg gave out before I could make contact. I fell flat curling to avoid injury, but got up laughing.
I stopped for the day. I took a couple days off, but I got back on the band wagon.
I finally got to the point I could add a hop to my step. After 3 months, I could walk quickly. I could hurry without fear of passing out.
It was about this time I walked up my stairs to the second floor for the first time in years. I walked up and I did it without breaking into a cold sweat, gasping for breath and collapsing at the top. My legs felt like jelly. I felt shaky, but all of those old terrible feelings were trumped by my accomplishments.
 I started to work on my strength the beginning of June by doing things I enjoyed and wanted to do in everyday life. It was early October before I accomplished my one flight stair climb.
I'm proud I was patient with myself, that I listened to my body, instead of trying too much too soon and hurting myself or quitting from frustration.

I've always been a woman that enjoys activity. It relaxes me and energizes me in one. It allows me to focus and clear my head, leading me almost to a meditative calm so difficult to achieve during a battle with cancer.
Along with losing my breath I'd lost one of my few outlets, and now, with it returning, I'm again remembering the good it brings.
 Soccer season had to end eventually. By this point, my legs had regained a significant amount of strength, but my arms had been ignored. The first day X and I went to the driveway to play basketball I lifted the ball to shoot only to watch it float uselessly, not only below the rim, but below the back board.
X thought I just didn't know how to shoot and launched into a full scale lesson on proper form not realizing I was about to burst into tears.
"DAMMIT." I cursed,  "I was damn good basketball player and now my child thinks I don't even know how to take a proper shot. How am I supposed to teach him the moves I've been planning on. How will I teach him to dribble, to do his cross-over? How about hook shots and backwards lay-ups?"
 I wanted him to know how to dance with the ball and I wanted to be the one to teach him.
Again, I parlayed my sadness into motivation. After a week I could finally hit the backboard while shooting. Soon I was making close shots. Then it was on to lay ups.
This time though, unlike my early exercises with soccer, I was able to move my feet. I was able to run a little. And by mid-December I was able to teach him how to dribble fluently with both hands. By Christmas he'd perfected his cross-over and just yesterday he tried to pull out the behind the back cross over while playing.
All the while he thinks we're playing, I'm working to strengthen myself. I'm working to gain energy so I'll be able to participate in his life as long as possible.
I'm finally to the point I've ditched the oxygen.
The wheelchair is packed away. People have begun to forget that I even have lung issues, but I remember and hope I will always remember the excitement I felt when I could finally take a pain free breath or walk without losing my breath or go into buy milk for the first time.
 By celebrating each small accomplishment, by listening to my body and it's cues, I was able to manage my severe lung fibrosis and chronic obstructive pulmonary disorder. Now it's on to more activities and a happy, healthier, easier life.


Bekah said...

I'm so, so thrilled you've ditched the wheel chair and the oxygen. These small steps are amazing hillary, and YOU my dear deserve all the best this year.

Here's to more baby steps, big accomplishments, and a lovely year with great lung-health for you.

Sending my love,

Valerie said...

You look so awesome!!!!!!!! xoxoxoxo Here's wishing you continued strength. :)