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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Sunday, August 22, 2010

I regret not running screaming and yelling to dana farber as soon as I started experiencing shortness of breath last year. 

From go things went badly. 

Before the second round of my chemo I complained of shortness of breath. My oxygen sat was dipping to 93. I asked for a chest xray to rule out pneumonia before getting chemo. 

I got my chemo that day but two days later found myself in the ER with fever, chills and dyspnea. 

Turns out I did have pneumonia, or may have, there is some disagreement. 

At no point since then have my lungs returned to normal. 

Managable, yes. 

A non-life threatening illness, hopefully. 

Last year I didn't gasp for breath and have to stop and sit while going through the zoo.

 I walked to the beach and played in the water no problem.

 Now I lose my breath throwing a football with x (even though I'm aware other mom's can't catch or throw a football. Luckily, that is not a handicap I struggle with.). 

It has been almost a year since my lungs failed me and in hindsight, I wish I hadn't cared about that doctors feelings and whether or not I would bruise his ego and make him feel inept by running to a different hospital. 

He's not the one struggling to coach sports and looking at models of wheelchairs. 

I'm disappointed in myself for making such a stupid mistake for such a silly reason. 

Also in this past year I gave up the idea of traveling abroad for treatment. 

This was a family decision.

 I worried about the cost. J felt like it was giving up. 

Instead of hyperthermic radiation or customized cancer vaccination I accepted....... Long term steroids.

 Yuck. I've destroyed myself, and I'm not even talking about my unrecognizable exterior. 

I would no longer be accepted as a patient at the klinik I'm alpenpak.. This scares me. My options are almost nill and staying on chemo forever (which is what has been suggested) is not ok with me. 


Anonymous said...

Don't give up, Hillary. Where there is life, there is hope. Things in the medical field change so quickly these days. Stay strong, and keep searching for other options.
Keeping you in my thoughts and prayers.

Jess said...

Hi Hillary,

Have you thought about trying yoga? You're very active in your daily life so it might be a perfect fit for you. I had an auto in 2007 that failed and a cord blood transplant in 2008 that has been successful so far. I've had a lot of weird problems and have been in and out of the hospital for the past year or so. My gvhd has focused mostly on my GI track. I really feel that my yoga practice has helped me through all of these setbacks. I started with a dvd when I was first diagnosed with hodgkins in 2003. Let me know if you're interested and I could email you a list of dvds that I like. There are a bunch of free 20 minute sessions on yoga journal's website. It might be something that your family could try together? Just focusing on your breath and relaxing might help your lungs become stronger or more efficient. It's not a miracle cure but it makes my mind and body feel a bit better.

I've been lurking for a while but decided that I should leave a comment because I've been through some of the same gvhd stuff.

Stay strong - you're an inspiration!
All the best!

Anonymous said...

I wish there was something inspirational I could say Hill ... but truth is, all I can do is tell you that my thoughts & best wishes are with you. I truly hope you don't give up ... but I also know that none of us can make decisions for others. Just know that you are important to many of us ... & as Jess said in her quote ... you are an inspriation.

Stay strong ... & call if there is anything that I can do to make things easier.


Bekah said...

We've both been dealing with this disease for about three to four years, and I can say... that I do too, Hillary, look back and think or second guess the medical choices I've made.

Things that I know now, that I should've picked back then. Trials or chemos I should've chosen, but didn't. I truly believe that we overanalyze, second guess, and doubt ourselves when our bodies are physically handling too much (which obviously yours is right now), our physical beings NEED so much energy... that to get up in the morning and get through your day is a triumph (at least for me it is).

When my body is having a hard time, or recovering from chemo,I know my brain and my emotions are even more vulnerable. It's a scary place to be, and I wish it was easier...

Know I hold you in thought and love, and I wish for you the rebounds that I've watched you so often achieve after your treatments, but also know, you are not superwoman, none of us are, you are human hil, there is no 'giving up' in this... whether you continue treatments or not, whatever decisions you make in the future or don't..

you are breathing each day.
THAT is enough.

'sometimes just surviving is a noble fight.' - the boss

- Bekah

Valerie said...

Hil, You have done such an incredible job handling your own care every step of the way. Most people just stare at the docs and let them make all the calls. That is not you. I am always in awe of the way you manage your disease- not to mention the docs, the insurance companies, and ALSO you keep up with government advocacy. Girlfriend, u really kick some ass. No second guessing.