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, July 30, 2009

WHOA, Holy Response

I didn't quite expect the very concrete, black and white, response about my getting robbed right from under my fatigued, cancer riddled nose.      It is a difficiult situation. It is a family situation. .y husband and I are discussing how to proceed. Actions will be taken, but we can't handle inviting more drama into our lives.   Jon and I will discuss this among ourselves with the best interest of our relationship and our family in mind.    I hope everybody understands. We have terrible extenuating circumstances that could prevent us from taking actions we normally would.     We can't fight every battle.     We need to fight my cancer. I need to fight to survive.     Right now I feel like I am treading water, I am exhausted. My legs are heavy. I'm slipping. I need to focuson my survival and devising a way to financially stay afloat.     I did just suffer from having my $566 monthly income removed.       I also recently suffered a severe medical setback. I now know my cancer has spread like wildfire through my abdomen to my neck. My pet scan lights up like a christmas tree.       I am driving to boston as I write to discuss a comprehensive treatment plan that may include, but is not limited to, chemotherapy and radiation, in the united states, in germany or in some form of collaboration.   This is highly specialized care we are discussing. I need to focus to survive. I need to put my energy towards my needs and living my life.      I have my priorities and I have finally come to a place that, though I would like to, I know I can't fight all the battles. I need to save myself first. Then second, I need to protect my family. I am not superwoman. I can't simultaneously save the world, jail bad drug addicts, reform health care while fighting a disease that, due to business strucures and small print, threatens to bankrupt my wonderful family.       If I have to be ill, I want my family intact. I want them strong and happy when we can be, insulated from the bad. We can protect ourselves. That's what we'll do right now.        Right now we are in the midst of a health catastrophe. To put it lightly, we are all devastated. I can barely put on foot in front of the other.    The babysitter decided she wasn't able to help. Everything I have been doing has been with x at my side.  I am lucky he is so mature for a 6 year old. It saddens me I couldn't shelter him from my illness, but at the same time, he is a loving boy who cares and nurtures his friends and I.         My pain is excruciating, sometimes requiring up to 100mg of instant release morphine to gain control.     Even then, with the disease in my abdomen, a deep breath, laugh or cough will send me into agony. If I move wrong I receive a shock wave through my body, reminding me that I have been invaded, and that any move or gesture I make may come with consequences, no matter how hard I try to control it.           Can anyone really blame me for wanting to ignore the bad and spend the good times I have laughing and joking with loved ones? I know what I want to do, and that is really all I plan to do.         I understand the theft is terrible. It's mind boggling. It's a felony. That's why I wrote about it.    I want people to know and understand the trials I go through simultaneously as an indirect result of my care.   I notified my np immediately. Since such a large portion was taken, and since I filled the script so recently, I am at risk to be unable to refill it.    Luckily, melissa is willing to work throigh this so my health will not be compromised by two peoples' selfish short sightedness.      But I am all ready sleeping with ativan b my bedside and sometimes taking it during the day to calm my worries. We have so much to deal with. We can protect ourselves from this in the future and that is what we'll choose to do for now. I have to focus on my health and surviving. Any additional stress could impair my immune system and further complicate the disease. I want my family as strong as we can be, and we are bonded in our decisions. We'll pray for the people, but now, we are headed to boston to work on my plan of treatment. Then, with this information, we'll work on a plan to pay for it. I'll keep you updated. Keep us in your thoughts and prayers.

7 comments:

brynn said...

You absolutly need to focus on your health and you know that Jacob and I are here to do whatever you need us to do to help you! :) Get yourself healthy (both of you). You are always in my thoughts and prayers! Love you Hil!

p.s. I saw this person today and wanted to kick her ass!!! haha could you imagine!

Bekah said...

Hey Hill,

I am so sorry for these set backs -- again, I know I am pushing here. But, and you know I love my Dana Farber. But, they are not specialists in refractory Hodgkin's Disease. PLEASE, please, before you do any drastic chemo, please, go see Dr. O'conner in NY.

Your body has seen so much chemotherapy, the last thing you should do in his (or any specialists eyes) is heavy chemo, as your body is so weak at the moment.

It is hardly ever the cancer that puts us totally out of comission in the end for HL -- it is always the treatments. Please, take into consideration a quick visit to Dr. O, he is seeing patients till August 11th at Columbia, and then he is moving to NYU -- and won't be seeing anyone till September 14th.

With the way your disease is reacting you need to see someone who deals with refractory hodgkin's disease on a daily basis -- HE does. Not Dana Faber, although they have amazing treatments and docs (as I'm being treated there at the moment).

I know you don't have much energy, but in my heart, it's necesarry for you to see him. A trial that won't kill off your good cells, and takes the cancer down a level is your best option now -- not chemo.

Please consider,
I'll send you his information at any time.

- Bekah

Anonymous said...

Jeff and I are always here for you and Jon too, if you need anything at all. Take care of you and your family first Hil, that is definately the priority.

Love you!
Nic

Anonymous said...

You and your family are in my prayers. You've been through so much...I am awed by your strength.

Wendy

linda keenan said...

email me if there is anything i can do to help with childcare, even though i am pretty far away. i have a LOT of free time as frank starts kindergarten. and i cant think of a better way to use it.

cris said...

Wow. If I get to feeling sorry for us, a few minutes with your blog could take care of that.
I wish you all of the best. Sending strong white light towards you.
We are older, and a lesbian couple together for almost 20 years now. 5 years ago, my partner started dealing with some major health issues. Through a misdiagnosis due to lack of insurance (we both worked low end jobs) the diseases that would ravage her body were missed. A year ago, she was the recipient of a double organ transplant. Our primary doc has a saying "if there is a faint/rare possibility of something that might happen because of this (side effects/corollary illnesses), it will happen to N." and it has so far.
I am glad for you that you have lots of family/friends support. Fight the battles you need to fight and let popular opinion jump in the lake!
thank you for sharing so much of yourself.

nmorel said...

I totally understand where you're coming from. Although I still remained shocked that someone would steal form you. Please let me know if there is any way that Barry and I can help with X. I get busy towards the end of August with school starting, but I still have a few weeks home. Thinking of you!