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, January 26, 2011

Experimentation and Recuperation

I made a miscalculation in my medication management. 

Knowing I am going to live with cancer has changed my goals and ideals for treatment, and by living with cancer, I mean I am no longer searching for a cure. 

I have cancer. I'm hoping we can co-exist with as little side effects as possible. If a medication regimen sends me into remission, fabulous, I'll take a holiday.

My health will be reviewed via PET scan or CT every two cycles or 6-8 weeks, whatever we can get covered.

HERE IS SOME GOOD NEWS: A very vague indicator of cancer, the sedimentation rate or ESR, which measures the amount of inflammation in a person's body, has significantly decreased from my last treatment.

Two weeks ago when I restarted my velbam my ESR was high @ 50.

Yesterday it was normal at 15!

Something is working.

But I understand this concept is still difficult. It's new and relatively unheard of.

I know I will die from the side effects of harsh chemotherapies. I have come to close too many times through repiratory failure, septicemia, cardiac arrythmias. 

Living with my cancer is the best chance of survival.
I want cancer without disease. I want chemo that allows me to participate in after school activities, esp. Basketball, baseball, soccer games.

I don't want to be on the sidelines. I want to coach. My life is not a spectator sport,  but x still has a running count of how many games I've missed.  

I'm up to seven.

I missed a tournament game monday.
I missed Lexi's tournament game yesterday all because I made a medication miscalculation.

I'm running out of my cesament, my new miracle medication that allows me to function and participate in life the day after chemo!

It is amazing.

It is so new that no one has it.

My team keeps telling me I should "never have to ration my medications" or "suffer without my medications."

Well, I have been trying to get my hands on these pills for 3 weeks now. I still don't have them.

Rite Aid here can't get it. I've moved on to having my NP at Dartmouth deliver it to their pharmacy, who should then call me when it arrives, and I will drive the 45 minutes to get it.

Otherwise, it's flat on the couch for me.

I pity the patient that had to live without this.

Marijauna Arrests

Yesterday I made the miscalculation of taking a cesamet in the am, which gave me great energy, but wore off before the kids were out of school.

I had to take my ativan (the only other anti-vomiting medication I don't have a severe allergy to) to not throw up. 

That knocked me out until this morning. I missed Lexi's tournament game. I also missed my night time medications.

I felt like I was run over by a truck.

It's too sad. I also pity the cancer patient who didn't have this medication to cope. It's a Godsend. It's prescribed. It just happens to be marijauna based.

It hasn't caused me uncontrollable, possibly permanent, twitches (a la reglan, compazine, phenergan). It doesn't cause massive migraines (ala zofran and kytril).

Med Arrests

It doesn't do these things because it is natural. I'm holding my last one to make it to Xander's tournament game tonight.

Hopefully, I can get it again so I can enjoy life in the future too.

Cross those fingers and pray.

1 comment:

stonepost said...

You are a champ, Hillary. I will cross my fingers and do my Prayers in the voting booth: FOR medical marijuana, FOR National Health, FOR treating other people as I wish to be treated.