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, May 5, 2009

Stressed to Death

I’m awake.
I’ve been awake, in one form or another, puttering around, trying to figure out what to do with myself since 2:30 am this morning.
I don’t remember when I fell asleep last night, I assume around 9pm, and at that time, I was out, dead to the world, no one was waking me.
I do remember trying to get Jon to celebrate his official last night of classes for the semester and then plan our trip to Maine this weekend.
The trip is really all planned, Grace, our long time friend and my brother’s girlfriend, is graduating from UNE with a degree in NURSING!!
You go, Grace!
Since Grace has been around the entire time through the accomplishment of this endeavor, we are planning a weekend to celebrate.
This is also the first weekend that I am officially, according to doctor’s orders, allowed to go on vacation.
When I first heard the date of escape I was planning big things, big trips, for my big escape.
Being held in semi-isolation for almost a year will do that to a person.
My brother in law is in Miami this week at a conference. I could have mooched a place on the beach, but that would have required a harrowing plane ride where I shared recycled oxygen 70% of the time.
Now that sounds disgusting and dangerous to a germaphobe cum quesi-agorophobe from years of cancer treatment and isolation for my own protection.
Grace’s graduation in Portland, ME will serve as the perfect mini-vacation destination, peacefully within driving distance and far enough to know we are somewhere away from home.
We are all so excited, but after this point in talking, I zoinked out, comatose to the world, only to awaken at 2:30, awake, and lay in bed, thinking, deciding, if I may just get back to sleep or if I should give in to insomnia.
I got up. I typed a story, probably an excerpt for my book, something about Malcolm Gladwell’s theory on identifying personality and occupation by names and Freakonomics take on how to identify the upper class and parental education based on names which lead into me, my occupations, and the birth of my designer purse passion.
Does this sound like something you would read? I have to say, I have fun writing it. Of course, I infuse how good things are borne of necessity and illustrate the necessities that have sprung to life in the lifestyle I have, cancer and all.
Writing was all fun and games, I thought I could get some words out, some catchy titles, some anectodotes, and then get back to sleep like a normal person, but when I crawled back into bed there was no going back to sleep for me.
I tossed and turned a little before deciding to get up and head back out to the living room, which I have transformed, with the help of a friend, into an all-out working office.
I feel professional. I feel like a working girl.
Okay, not really. I feel like I have a gorgeous corner of my home to create, that I can function in during my periods of disability.
If I want to create beautiful things, I need a beautiful place. It’s part of the whole therapeutic milieu of writing.
Yes, there will be a quiz on that word “milieu,” everybody, start your search engines.
According to my favorite source, Wikipedia, milieu is the French word for “environment” or “organized crime.”
Oops, that’s not quite the definition I was looking for. Trying again, thank you Merriam Webster, a milieu is “the physical or social setting in which something develops.”
Yes, my office is my creative milieu.
I can barely type the word, nevertheless say it. The word certainly stumbles across my tongue, but if I am ever to get this word down I know when I saw it I will certainly sound. . . . .smart.
And that’s what knowing these big words are all about isn’t it? Impressing people with my expansive vocabulary to radiate my intelligence?
Or maybe not, but that is how my love of words did start though.
You have no idea the type of creative works this corner of mine has been churning out since the addition of those steroids to my daily routine.
It’s sad that Thursday I will have to discuss with Dr. Alyea the taper, but I’m sure we can come to some conclusion about how to maintain my productivity and quality of life.
I was back up again after my attempt at going back to sleep and sitting in my office determined to execute the advertising campaign my father has finally decided to launch for his ecologically friendly home building business at 3:30am.
Five Eagles Design, LLC has been successful. It has survived 5 years, and Vic has expanded to offer blown in cellulose insulation packages to increase the energy efficiency of existing homes.
He decided it was now time to come out of his shell and announce his business to the world. This is where I come in to help when I am able.
I am his marketing girl. Check the website
I love it! Thank you, Samneang, for being such a talented professional. Sam does own her own marketing business as well, if anyone is looking for a site.
I also organized the very limited exposure we’ve had in years past, such as participating in Claremont’s yearly home show. I think our participation in this may become a tradition, we do specialize in ecologically friendly building and business practices.
This means we use local contractors whenever able. We want our business to stimulate the other businesses in our community. We have been lucky to work with so many great area professionals to keep good solid products and work in our area as best we possibly can.
Now, I’m off designing a newspaper campaign to run across area newspapers such as The Eagle Times, The Connecticut Valley Spectator, The Message, as well as in classifieds like The Weekly Flea.
I’m feeling kind of big time. I feel like I’m contributing. I hate feeling useless, this lends to making me feel hopeless.
I do not think there is any feeling on earth worse than hopelessness and despair. I am happy I have found a niche in the midst of my disease to carve out for myself to show I can still be productive and contribute despite my illness.
This, really, is the main motivator behind most of what I do: the desire to take control where I am able and contribute to make sense of my disease and hopefully help others cope with their disease processes easier in the future.
My actions generally reflect this foundation of being. It’s kept me relatively sane, so far. Okay, I said RELATIVELY!
But even after completing two design advertisements, one for The Eagle Times on Sundays and another for a “Go Green” pull out section that would span across media outlets, when I crawled back into bed, I couldn’t sleep.
By this time it was 4:30 am and I had officially been awake since 2:30. Did I want to go back to bed? Could I fall asleep? Was it worth it if I did. I had plenty of things I wanted to do today that could be started.
Why was I even awake? Was I anxious?
Most psychological professionals ask about early morning waking as a key sign of major depression.
Should I pop an ativan and put myself back into a deep slumber? Should I just wake up, get my coffee, and admit defeat to morning insomnia?
If I did this would I be out of commission from fatigue by 1:30 in the afternoon? Would I be miserable when X came home from school and irritable with Jon when we were hanging out this evening?
Would I be a cranky bitch at my Aunt Priscilla’s funeral that’s taking place today?
Wait a second: Aunt Cilla’s funeral, because she died, from breast cancer. That is today.
These past couple weeks have been difficult in the death department. People say deaths come in threes, and yes, I have had three deaths of people relatively close to me recently.
I spoke about Jayne when I posted her memorial information.
My dear friend’s father passed away recently, and though the end had been in sight for a long time now, the final moment are still a major event marking the passage of not only a man, but a lifetime.
The aftermath and the feelings associated with final loss need to be coped with, and my take on deaths is that the person has moved on, but the living need time, love and attention.
I’ve been trying to give some time, love and attention to these people, but in a limited capacity.
I have a very personal response to people I know who pass away, specifically from cancer. I wall up boundaries long before their death. I consciously or somewhat subconsciously, I don’t know, decide the level of participation and closeness I can personally handle and maintain my own personal battle.
This is a survival instinct.
Sometimes, I wonder if this is selfish, but then, I know the people in these situations understand my point of view. I also know that they may feel the same towards me. We have great love and respect for each other. We know and understand some raw emotions that we are facing in common; however, we also know that talking or meeting could bring to the surface strong raw emotions that neither one of us may want to deal with.
This is where boundaries are set. It is unspoken, but I assume it is mutual.
During the period of passing with my Aunt Priscilla, I did not see her. I did not go to her bedside, even though I could have walked to where she lived.
I knew she was dying. I knew her time was near. She was given time to process her death and accept it. Cancer does often offer this blessing. Cancer gives a period to make amends and wrap up any unfinished business or feelings that may be associated with this life to make a clean break.
I am thankful to know this. I think Priscilla probably was too, but I wouldn’t really know, I never went to see her.
I couldn’t. It was too much for me to bear. There have been too many deaths recently, especially ones from complications of cancer, too close to me.
I need to maintain a level of separation for my mental health so I am not overburdened with the idea that people with cancer die.
This is probably why I woke up this morning at 2:30, thinking about all the possible plans I will do today to keep myself busy.
I’m really probably anxious from the reality that is swirling around in my head regarding life and death. I’m planning my distractions: writing, writing, writing, designing an ad campaign, making organic dandelion and maple jelly, refinishing the furniture I have collected from yard sales and dumpsters into refurbished pieces for my patio, which has been a project I’ve been wanting to complete for 5 years now!
I have finally gotten to the stage where the entire picture is coming together for the patio design. I’m in love with the ideas of lounging in comfort this summer once the work is done.
I’m also distracting myself with plans for a fun weekend, semi-ignoring the fact that I will see Dr. Alyea on Thursday with Jon and Xander to discuss many things, among which are my steroid taper and the possibility of a T-Cell lymphocyte infusion in June to boost the immune capacity of my donor system to fight cancer.
My donor’s immune system does not seem to have the capacity to fight the disease on its own right now. That is why I still have cancer.
I have no idea what this infusion and prep entails, but I think I’m to the point where it is time to gain some insight, just for knowledge sake.
And these past pages upon pages of writing, yeah, these have definitely been part of my distraction coping mechanism. I’m glad to have a space to let what I feel out.


Anonymous said...

Yowza ... Yowza ... Yowza ... great room Hill!! Nice job.

As for holding back from people who are about to die of cancer ... you are absolutely normal. Several years ago, my cousin was dying of aids ... & near the end, most of his friends stopped coming ... it was just too hard for them to face, particualarly when so many of them knew it was their ultimate fate.

So cut yourself some slack. I'm betting Aunt Pricilla knew that ... & would have wanted you to do what was best for you. It is critical that you stay focused on beating this dreadful disease.

Take care Hill ... be strong & creative. Good luck tomorrow.


gracylou237 said...

I can't wait for this weekend! Your first weekend of freedom! And what you didn't tell everyone is that you are the one who inspired me to become a nurse! It will be memorable on many levels. See you sooon!
Love you.

Anonymous said...

I hope this post makes it into your book. It is so real it hurts. Breathtaking, real, honest, and God Bless you, your Aunt Prescilla, and all your family. God is watching over you.


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