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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Tuesday, August 4, 2009

Giving in is not giving up

I'm scared.

The cancer came on with a flourish, so quickly and dramatically.

I had noticed symptoms that would make me suspect limited, localized disease. I was comfortable with this.

I did start to notice my abdomen swelling. I noticed that it was difficult to get my shoes on. I was working around my stomach to try to reach my toes the same way a pregnant woman would. It seemed impossible.

I explained it away due to the weight gain or bloating from th

e prednisone.

I have never had a fatty tummy before. I had never gained weight so quickly.

I joked about the problems.

Then, I started to have to pee all the time.

Again, I thought it was my medications.

I was drinking more. My mouth was dry. I was taking steroids.

I knew waking up three times during the night was a lot. Again, I felt like I was pregnant.

I wasn't worried, just inconvenienced.

I did notice when the pain started to wander.

I again noticed when the new pain required morphine, and then after a while, it required more morphine. I thought I had a tolerance. Maybe all the rain and humidity was making me achy.

I have been through a lot, and I was so busy, taking care of two kids, coaching soccer, writing, proceeding with patients as partners and trying to create a contingency plan for

inevitable: when I would again be officially diagnosed with Hodgkins Disease.

I knew the diagnosis was coming, but I never thought the diagnosis would be made on an emergent basis.

I didn't think I'd be rushed to appt then scan and then biopsy.

“I'm running out of time,” is the message I hear. “Everything needs to be done now. The extent of your disease alone can kill you.” I hear.

I didn't prepare for this. I am not emotionally ready to have a killer living inside me. I’m a time bomb waiting to go off.

I am scared.

Part of the plan to get me to active treatment as quickly as possible was to abruptly stop my prednisone.

This action alone is generally shied away from due to the possible side effects.

But topping prednisone short at 10mg a day was safer than continuing with it and risking an infection during chemotherapy.

Without the prednisone, I can now tell what symptoms the med was masking and what symptoms that were actually cancer.

This diagnosis really blindsided me.

I was looking left when the disease took a proverbial right and caught us all off gaurd.

I now having nightly fevers with chills. My abdomen is distended, I still cross my fingers and hope that it is a side effect of the prednisone, but now I know it could be tumors.

I look back at all the times I writhed in pain, curled in the fetal position, my bloated stomach to blame. I told myself it was the prednisone and I was just experiencing discomfort.

I remember the week after I was discharged from Brigham and Womens Hospital with stomach pain of an unknown etiology (cause).

I was discharged with my pain under control but sans answers.

I rushed home to care for my mom who had just had a hysterectomy and to prepare for xander's tonsillectomy. I yearn to care for them. I was supposed to spend my life caring for others, especially those I love. I want to help others. I have been robbed of this ability. Two days after x had his surgery, I asked my mother (only a week or two post op from her surgery) to care for him while I went to the Emergency Room for pain control. There I said things without bursting into tears that I never thought I could.

I asked for "pain control" or "comfort care." I said I was thinking about a palliative care consult and all I wanted was my pain controlled to get home and care for my son.

I am scared that I have reached the point that I can request "palliative care" also known as end of life care with out crying hysterically and being sent to a therapist, but c'est le vie.

At least, I have options. I love options especially quick and efficient options that allow me to stay at home with my family.

The message that I need to start chemotherapy and quickly has been said by ALL my providers involved, including Dr. Jacob in Germany.

I will not be seeking treatment in Germany unless the immediate, emergent action plan fails.

This is the part I hate. It is the hurry up and wait process.

I will undergo the chemo which will be about 3 months, then I will receive a t lymphocyte infusion.

I feel like my whole life is being tossed in the air and the pieces are being allowed to fall where they may. I feel like my life is sand and I am grasping to it as hard as I can but the sand keeps escaping.

The irony of this analogy is that I love the feeling of sand falling through my fingertips. It's a unique feeling to have something in your hand but no control. I love when a small circular tunnel forms and it's clear there is no going back.

There is no saving that sand.

In that moment there is a sense of freedom, a sense of liberation, or even reckless abandon.

Maybe it's time I allowed myself to feel this way, not giving up, but giving in.

I think I am ready to put myself in the hands of God, officially, and trust the outcome will be the best outcome for everybody.

That is what I want.

I want to leave a legacy. I want to leave the world better than when I came in. I don't want another person to suffer the way I have.

In this, There is no place for fear, but I'm scared.

I am scared because we are all ready treading water as a family.

Our interactions are strained by burdens we did not bring upon ourselves.

I am scared regarding inflation and what could happen if food sky rockets? How will x, lex, and j live and cope without me? Will their anger consume them? Is x even old enough to remember all we did? I can't worry about these things.

I see the light at the end of the tunnel. I feel the relief coming. I am giving in, I am free falling back. I will do what ever it takes, whatever I can, to survive, but I am lucky to be fully in someone else’s hands now.


Anonymous said...

God Bless you, Hillary. God will care for you and yours. He loves you so much, as you are His precious daughter. Your children and husband are also His. You are in our thoughts and prayers. You have left the world richer just through this blog. I bet your family would certainly say that it's much less important than the richness you have left your family of origin, and the family you and John have created. God Bless you all, and you are in my prayers.


Emilee said...

Very moving Hillary. You are leaving yourself in Good Hands. I hope all goes well.

Anonymous said...

Know that you have touched sooooo many hearts with this blog. I read this blog before I shut down this computer every night and it touches me beyond words. I pray for you and your family every day.

Mrs. W.