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."
Saturday, June 6, 2009
Getting Back to Living
I didn’t get around to posting my big, health news, from the Big Doc at Dana Farber yesterday because I was busy doing something I hadn’t in a while.
It’s called LIVING.
It consists of doing things I enjoy that put at me at ease.
This state, this living thing, has alluded for a couple years now (Dare I say three).
It had been gone so long that I’ll even admit I didn’t remember what it was like to function for an entire day at a minimal level of energy without experiencing exhaustion or pain so debilitating that it either sent me straight to bed moaning or turned me into an obnoxious whiner that didn’t even want to hang out with myself.
I’m sure my friends, family, and loved ones have some insights to share on these special days.
Mostly, this fatigue (fatigue is not a suitable word to describe the depth, pain, and disability associated with it. It’s not just being tired.), would come over me quickly like a tsunami and knock happy Hillary to Thailand and leave an angry, irritable, impatient mess in my place.
This would happen anywhere as soon as my body felt it had been over extended: at the in-laws, at the movies, doing errands, watching TV at a friends.
That was a big sign to get out and get out fast before my bad mood became contagious and I started spitting green pea soup a la “The Exorcist.”
I haven’t been having those moments recently, thanks to the steroids.
Dr. Alyea stated that with chronic graft vs. host disease (as I have) people generally live on a dose of steroids for a period of about 2 years. The trick is finding the lowest dosage that is still effective.
We had been tapering (lowering the dosage by 5mg at a time) every two weeks, which he stated was a “pretty quick clip.”
It sounded fine to me.
I thought I was getting off those things, but when he said I wasn’t, it certainly didn’t hurt my feeling, especially since I am now at the point in my treatment where I really just want to feel healthy and enjoy life.
It is incredibly hard to fight and fight and fight to live for years.
After a while, you forget the quality of life you are fighting for. I started to forget the great times that accompany “normalcy” aka “health.”
Thanks to this process, I’m remembering who I am, who I was BC (before cancer). It’s a woman I had lost touch with from being through the ringer of hospitals, surgeries, chemotherapies, radiation, doctors, and around again.
My whole focus was on surviving, existing in this new “cancerland community” that I had to navigate “or else.”
It was like some terrible alternate universe. I’d been thrust into he twilight zone overnight into a world that consisted of sterility, machines and specialist, as a patient.
I’d never thought I would be a patient at 23 years old.
I never thought I would be on the opposite side of the treatment table, lying in the stretcher, being pushed, carried to diagnostic test, or worse, to be the patient that was intubated due to lung failure whose ventilator needed to be managed meticulously with an Arterial line in place for my blood pressure and vasopressors dripping through my central line.
I wasn’t supposed to be in that bed!
I was 24 years old.
I was supposed to be perked at the window or puttering by the bedside watching every line and drip and calculating and anticipating the next action the patient may take to keep whoever the man or woman I watched over alive.
That was where I was supposed to be, not 90lbs, bald, frail, with critical care staff advising my family that funeral arrangements should be made.
How did I end up there?
Anyway, since I have been in an almost constant state of sickness since I started my ABVD therapy in May 2006, I haven’t had time to process what I’ve been through.
I haven’t had time to think it through or feel the feelings.
Obviously, I never would have wanted to during the period I was actively fighting for my life.
All my focus had to go towards taking the next step in success, making that next move in treatment towards a cure.
There was a lot to be lost if I lost my focus.
Now, I don’t have to do that.
I am in a “holding pattern,” and I am so happy about this.
My team at Dana Farber and I agree where I stand is GREAT.
I look GREAT. I feel GREAT. It is time to do somethings I enjoy. It’s time to get back to LIVING, living life like the woman I am inside that my body has not allowed me to be.
My lab results, Pat (The transplant nurse) dared say were, “Perfect.”
In fact, Pat was giving me a big ego boost all day using that “perfect” word.
I think Pat is great. I think a good working relationship with your professional team is so important.
Of course, like in any relationship, there will be disagreements, especially with my “strong” personality and misunderstandings, but communication is key.
Pat does well helping me navigate and if I ever need a self-esteem boost, I’m going to call her to hear, “Wow, you look great. You could be a model. This is amazing. And how are your projects. I just love these ideas. . . .. “
So, Hill’s coming back in a big way.
I do not have to go to Dana Farber for an appointment for a month! A whole month, that is July 2, 2009 people.
My follow-up after that is July 30th. I get a whole other month free, and it’s during the summer!
I will receive my PET scan on July 30, 2009. If there are “hot spots” suspicious for Hodgkins, they will need to be biopsied prior to any further treatment.
Patients, specifically with Hodgkins, who have undergone allogenic transplantation, do have a tendency to have areas of chronic inflammetion.
Dr. A stated that he has had patients with routine positive PET scans that when taken in for a biopsy showed no active disease.
Wouldn’t that be fabulous? I would be cancer free! No Germany for me! But this would require a surgery be performed, sometime in August, which fits with my projected treatment schedule I have made out in my head for myself.
I haven’t enjoyed a summer since 2006.
My summers have been occupied with chemotherapy regimens, in 2006 in what ABVD, in 2007 it was radiation therapy, and in 2008 it was trekking to Dana Farber for a clinical trial with LDH.
I really would have rathered camping.
This year I can!
I’m making plans.
Making advance plans is something healthy people certainly take for granted.
If you are constantly wondering where this rollercoaster of health is going to take you next, you can not plan a vacation. You can not look a month down the road and say, “Hey, I’ll be healthy this week.”
For an extensive period of time, I couldn’t even make dinner plans in the morning.
I just did not know how I would feel and where I would be eight hours later.
That much can change in the health of a person with a life threatening disease.
Obviously, this is difficult to explain to friends, family, and anybody who is healthy. I have always been an organized planner. I like to organize and plan. To suddenly go from Miss Meticulous to Miss Mess and flake on plans, cancel at the last minute, etc. was not easy to accept.
However, it’s a side effect of cancer.
Long term plans, long term goals, and long term consequences, fall by the wayside while you are focusing on surviving minute to minute, hour to hour, maybe day by day if you’re lucky.
The whole structure of time changes as your mind focuses to help your body. The world becomes smaller, until you are the world.
You are tuning into all the intricate and complex needs of your body and it’s organs to keep yourself alive.
You’re sending conscious message to force your body to do things that your brain automatically handled before, like breathe.
Of course, to an outsider, you are selfish, unappreciative, and don’t care about anyone else.
How could you? My life depended on focusing and narrowing my focus to a level that I could maintain my existence.
Getting to this place where all you can focus on is your body and healing, for me, was a slow decline, manifested by my world, my associates, becoming smaller and smaller.
I just didn’t have the energy.
First went the hobbies, my arts and crafts, painting, sewing. Then went the household chores, the cleaning, the cooking. Then went any work I had been doing for my father (which is also really a hobby).
I was prioritizing what I wanted to do to keep myself happy and ready to fight for life.
My husband would then get ignored. I would stop communicating with friends. I’d see friends if they presented themselves or called, but I couldn’t make any effort to reciprocate. Our relationships were not quid-pro-quo.
I was busy surviving.
My parents and sister always remained close. I always think of Lexi, but my energy is always reservd for Xander.
You figure out your priorities quickly. Spending time with Xander was mine.
Then at my worst, I would focus on Xander, look at the light, and cry that my child couldn’t grow up motherless, and focus, focus, focus.
Sometimes, I would evenlose sight of Xander, and then I would now that I was tumbling down a steep slope of sickness that was trying to swallow me.
Luckily, during these periods I was comfortable, but it saddens and scares me the state I must have been to feel completely detached from the world, especially detached from my son, who is clearly my greatest tie to life.
Now, I’m back to enjoying things!
I have goals and plans and projects to do for the summer to enjoy myself.
I am talking some serious family time.
Some things have to be done, like Xander has to get his tonsils out next Tuesday, June 9th (AWWWWWWW, poor baby).
He is also having tubes placed in his ears so he can hear again.
He had to go to the Doctors in Thursday for more antibiotics due to another ear infection brewing that needed to be nipped in the bud before the big day.
Hopefully, this will prevent the multitude of sicknesses he has experienced, especially in that last year after joining kindergarten.
Kids are great, but they are germ mongers!
I’ll update you on my plans. I have big ones. I have big things on my mind, big projects, and I’m happy I have the health to, hopefully, accomplish them.
Wish me luck, and that I make lots of money, today I'm selling off my goods at the flea market in Charlestown!