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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Wednesday, December 16, 2009

What ifs


I’m concerned I made the wrong decision in accepting the standard of care to treat my cancer.

I worry that all I have done is transfer one life threatening illness for another.

Cancer treatments are a forever evolving industry.

My mind keeps going over the maybes and what ifs.

There are several of us who choose to move from clinical trial to clinical trial in hopes of achieving the ability to live with relative freedom.

Unfortunately, we all have to make sacrifices based on our decisions.

Those that want to live surviving off trial drugs must live close to a cancer center and understand that they will indefinitely be controlled by their disease.

I chose my course with the idea that graft vs. host was a manageable disease that would allow me to stay with my family.

It is not so manageable.

My lungs remind me every morning.

Apparently, they don’t like the winter weather so much.

Just running out to my car delivers a shock to the system. Moving ten feet outside the house and back has me sitting, hunched over, gasping for breath.

I’ve again acquiesced to the idea the I NEED my oxygen.

I’m lucky someone created it. I’m lucky these medical technologies exist, because in a time not too long ago, I wouldn’t have had the option to grab my oxygen tank and run into the cold.

Having my lungs ruined through treatment was my worst fear.

I almost didn’t know how to spell that word- F-E-A-R

I certainly don’t like to admit when I’m scared. I don’t think I’ve ever put it into black and white before.

But that’s what I am. I’m scared I’m going to suffer more. I’m scared I’m going to be left alone in a hospital under the care of a surgeon while experiencing severe life threatening medical problems (Can you tell I’ve been traumatized by this?) I’m scared I’m going to burden my family and inhibit their ability to live happy lives. I’m scared that I’m going to continue to fight to live only to end up severely disabled with no quality of life.

I feel like I need to decide, finally, where I need to draw the line.

It’s been haunting me.

I think I may have drawn the line a long time ago had it not been for my family.

Admittedly, most my fears have to do with the future.

That sounds silly when tomorrow isn’t even promised.

I try to keep chugging along, minute to minute, hour to hour, putting one step in front of the other, one day at a time.

I don’t know which of my fears are worse now: the fear I have of living or the fears I have of dying.

During my months in the hospital I finally accepted that my family could function without me.

We have been really blessed by the love and support we’ve received from our community.

Jon’s parents have helped greatly by being available to care for X and providing him with the daily consistent schedule he so desperately needed that I couldn’t provide him. Having the consistency of a loving environment that he can rely on day in and day out significantly decreased his anxiety and depression so he could focus on being a child.

This was exactly what I'd been hoping for since I'd gotten sick.

I thought I’d finally let go of my guilt about not being able to be the perfect mom I always hoped I’d be.

I mentally had prepared myself to die.

Who really comes back from months fighting to breathe?

It was relatively easy to transition back into the dependent role of illness, but it has been much harder transitioning back to the idea that I’m going to survive.

It’s been hard to muster the motivation to treat the simple

ailments associated with my GVHD, such as my “geographic tongue.”

Leave it to X to point out what I’ve been ignoring. He asked this morning why my scars were pink.

To him it looks like my wounds are somehow coming back to life.

And that is kind of how the skin looks. In the areas where I’ve experienced severe depigmentation (I’m now extra white), there are pinks rashes.

Finally this morning I decided to do a body check only to discover skin peeling off at my bra line. It's amazing how cancer can destroy such a beautiful body. I'm very fortunate I had a life free of body image issues. The scarring, decoloration, and hair loss doesn't bother me like it may others.

What does bother me are the wounds that come from the inside out.

I’ve been breaking out the betamethasone cream and treating isolated area, but the rash has taken over my abdomen.

It looks like it’s starting to creep towards my neck and thighs.

My dexamethasone mouth wash has kept my mouth problems at bay.

My eyes are finally feeling decent without the use of contact lenses thanks to a regimen of doxycycline and restasis.

I meet with Dr. Dana on the 6th to discuss possible enrollment in a clinical trial, but I’m finally happy with my sight.

Hopefully I’ll be happy with the treatment regimen for my lungs, which I only now have all the medications in the regimen to treat Bronchiolitis Obliterans.

An aerosolized steroid administered through a nebulizer apparently does not exist.

I was told it’s not as simple as just crushing up a steroid and turning it into a liquid and placing it in a nebulizer.

All that did was give me ideas.

I now have singulair, zithromax, advair, and aerobid as a line of attack.

This is on top of the Bactrim and acyclovir I’ve been taking since my transplant in October 2008.

I really wonder how long a person can survive with as much intervention as I’m receiving, but I have finally decided, again, that I’m going to use that time to LIVE as opposed to slowly dying.

5 comments:

Bekah said...

Hill,

This post, just breaks my heart. I hate that what you said is true -- you've transferred from one illness to another.

I admit, some days I think to myself -- wouldn't it be easier to just let this disease take hold of me? Not pursue these clinical trials any longer. I'm not sure what makes me go... maybe it's my family, my friends? the knowledge that some how some way I'm helping others? Whatever it is. I'm here. Living with you, not slowly dying.

I can't imagine how difficult this is for you, as I've never had GVHD before, and surviving two transplant alone is a miracle. I just wish life made sense sometimes, and the ones who should be rewarded for their sacrifice n brvery were rewrded.

I'm sending you a link to another Hodgkin's, allo, GVHD, survivor who is having lung issues not to scare you but -- she is an amazing inspiration and is looking at a lung transplant in the near future her name is Jennifer. I hope you take some peace from her.

http://jenniferwilley.org/

Thinking of you,

Bekah

Anonymous said...

Hi Hillary,
I know this is an incredibly stupid question (having zero medical background), but would a warmer climate be more conducive to your health? Could more humidity be a good thing?
I don't know but I can't help but think that having to go out into the bitter cold with your oxygen tank might be somewhat alleviated by a different climate.
Carol

Joe said...

Hi Hillary What a battle, God bless you. You're an inspiration to those who know and love you. You're blessed with a dedicated and loving family. I can't even imagine what you're going thru. You are with me in my thoughts and prayers . Hang in there the best you can. Happy Holidays sweetie.

Joe Corriveau

Neil said...

Hi Hillary. Your spark of hope and determination is lighting fires in other all over the world with inspiration to overcome this disease. Let your spark always blaze as a guiding star this Christmas and beyond.
All our love and prayers,
Neil and Gail

Anonymous said...

Hillary,
You keep fightin' and we'll keep praying. Mom(Priscilla)is up in heaven cheering you on. We love you. I am in a St. Padre' Pio Prayer group and it is strong...You are mentioned ALWAYS and weekly at our Padre' Pio Parish Masses. Love, Denise