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 7, 2010

The Truth

It’s time for the truth.

It’s been hard for me to put the raw feelings of facing my mortality into words, and I’ve been avoiding publishing my battle for the world to see.

It was important that I discussed my thoughts and ideas privately with my family.

I hope my recent experiences help others who are facing life threatening disorders.

Sometime this fall one of the palliative care practitioners said I should decide my course of treatment during my period of health.

She said this in light of the fact that my cancer will very likely return, and in the interim, I will be battling my graft vs. host disease.

I’m glad I made the choice to be guided by palliative care, not only for their immense expertise in managing my pain issues, but for the insights and understanding they provide.

I have not found any other outlet that allows me to accept that I will probably die of this disease openly.

The ability to voice that I have not only accepted this as my probable fate, but that I am okay with it, has been a comfort I have yet to feel.

The idea that someone as ill as I have been needs to face their battles valiantly with the goal of beating the disease has been a burden.

It’s a weight I no longer want to bear.

I’m happy that I have reached the point that I can accept the dying process as an integral, interesting part of life.

It’s an adventure in itself.

For years now, I’ve pitied those that die suddenly knowing that they have been robbed of the beauty and honesty people show when they know your presence is not guaranteed.

I think everyone should experience the celebration of life I have during my disease.

After my release from the hospital and during my recovery from H1N1, I decided I wanted to see what my life would be like accepting standard treatments.

As you all saw, I declined. I declined quickly.

I declined so rapidly that I contemplated stopping treatment entirely.

It became apparent that I wouldn’t survive without active intervention.

It was the first time in my life that I considered not intervening.

I would have survived a matter of weeks at most. My lungs were failing and the rest of my body was following quickly. I lost 6 lbs in a week. I was emaciated.

Interestingly, I went about making this decision like most any other major life decision, such as whether to get married, have kids, go to college, etc.

I weighed the pros and the cons, except in this instance, I was forced to picture a world without me.

With me out of the equation, The strongest factor I considered was how it would affect my family and their quality of life.

I’d become concerned that my existence caused more pain than joy.

When I stop bringing love and joy to others, I stop living.

I looked for ways that I could make my family happy, but came up empty handed in light of my lung issues.

But, of course, there is always “The X Factor.”

It’s safe to say that if I didn’t have my beautiful family, I may have made different decisions regarding my care, but I promised my little man a miracle.

I’m so happy it could be given to him.

I think in finally crossing the line and accepting any outcome, I’ve been freed.

I’ve been content and joyous these past weeks.

It’s taken as much time for X to stop being skeptical.

Prior to the holidays, he had become cranky and anxious. We tried to liken it to holiday stress. We had a couple of big family weekends and events.

What was really on his mind was whether or not I’d get better for Christmas.

Can you imagine having the pressure at 6 years old, during Christmas time, of wondering whether or not Santa and God will really answer your prayers?

Of course, he was anxious and whiny.

Of course, he didn’t care about school work.

Life has changed so quickly, and I’m glad I chose to return to it, even though the return is temporary.

I’m free to take life slowly, accomplish one task at a time, with the ultimate goal of the best experience ever.

I’ve been trying to pass this along to X.

My new goal is to have the perfect day everyday, and to pass that on to others.

8 comments:

Anonymous said...

Hi Hillary..it's deb W. This is valuable dignified information that I will take into my heart, so I can hold it forever, whether it be about one of my patients, family or friends, or me. You are truly an inspiration..on so many fronts..I am learning a lot from you and in a position to hold this for others.Lots of Love, Deb W.

Anonymous said...

Hillary,
You are one of the bravest people I have ever encountered. And I think that you are right to concentrate on living well without giving up the hope of longevity. It is really what we all strive for.
Know that you are always in my prayers.
Carol

Anonymous said...

Hi Hillary,

I noticed in one of your previous posts that you mentioned your faith and had a dream about the Blessed Virgin Mary. I'm not sure if you pray the rosary but it is a beautiful meditation which draws you into the life of Jesus through meditations about his life through the eyes of his mother. It brings great peace and can help you very much, especially when the fear comes.

I agree that the picture of womanhood and even life offered to us by the world is very distorted from the truth, for it is in seeking and finding the TRUTH which is all that matters in this life. I think you are drawing closer and closer to it in your journey and I pray that ultimately you find it.

Please consider the rosary. I know it will help you. Here's a really cool website where you can read more about it: http://holyrosary.ageofmary.com/

Mary is the model for all women because of her "yes" to God - "Be it done unto me according to thy Word."

Praying for you...
Is

Anonymous said...

Words fail me Hill ... so let me say that I am truly in awe ... of your bravery ... your class ... your intelligent presentation of what is going on ... & your willingness to share it with us.

You amaze me girl!! You truly do.

For my part, I shall continue to hope for a miracle that will allow you to live the long, full life I believe you deserve.

You are in my thoughts.

F

Anonymous said...

What a journey you are on! Your willingness and ability to share your life and its challenges has impacted so many!

I am happy to learn that you are feeling a burden lifted from you - seems to me that makes getting the most out of your life a lot easier - and we have seen how much you can get out of life!

May your days be filled with the victories that matter and the joys from all the little things that make life full and rich.

Dianne

Jennie said...

I am truly humbled by your courage and grace. You are an inspiration and example to all of us who have been so touched by your life. Thank you for sharing - you are my hero as well as X's. I am still praying for that miracle - in whatever way it is manifested.

DebA said...

Like all of the above comments I am amazed. It is so humbling to read your words. There is nothing I can add to this. I too will pray for you and your family. Miracles do happen, you are living proof. What a gift your life and words have been to all who know you near and afar. You are Blessed and so are we! Deb

Sig said...

I just wanted to send hugs. I have been thinking of you.
You are so brave. Such an amazing warrior. I am honored to "know" you.
Keep fighting my friend. You are our miracle.