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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Monday, June 14, 2010

The Cycle Begins Again




The cycle started again, the same pattern as every diagnosis.
 I hear it. I'm shocked and angry, then fiesty and determined ,but never in denial. 
My symptoms seem to suddenly worsen, like now I'm suddenly chronicly exhausted, but this probably happens since the PET gave concrete evidence that, yes, I am sick and therefore entitled to be an overtired women/ partner/ mother.
 My life again is flashing across my eyes, all I have done and all I still hope to do.
 I don't want to be scared anymore, and I'm not. Even more, I don't want anyone to experience what I have. 
In an attempt to accomplish something good though my disease I created baldies blog, joined the hiepi committee, tried to start cancervivor arts (anyone interested in taking over/ forming a leadership committe?), and am applying to extreme make over home edition for a "hillary's house,' much like David's house, but for adult cancer patients and families with preference given to bmt patients at Norris Cotton Cancer Center.
 My house needs work but not as much as each patient needs a loved one. 
Silly outlandish and proposterous idea right? But this is what I want. 
I think my pain and suffering has earned a good deed on my behalf. I'm also nesting, as usual. I'm getting the urge to make my surroundings pretty and impart my presence on anywhere I can as much as possible.
 Last time it was the mudroom, previously it was the masterbath, before that it was the half bath. 
Now, I'm eyeing our patio. This patio was on the plans since 2005. We finished the flooring and curtains last year, but I neglected to seal the concrete stain.
Guess what needs to be stained again?
 Now we need some final touches. I'm gathering images, putting together a design board with prices. 
First things first though, we suspect that water has infiltrated the space between the vinyl siding and plywood causing mold and rot. Our back wall siding needs to be torn down and replaced. 
I'm hoping that while some big men are working on the siding of the basement, maybe they'll clean it up so I can actually walk through it without going into respiratory distress.
Wishes like this cause a rift between my husband and I.
 As I begin to see my life being sucked down the toilet bowl, and want to do and accomplish all I wish I had the time to, all the family vacations we would have taken, the events we would have seen, etc., he sees our finances being sucked away with my life, no matter how much we did not spend in previous months. 
I get sick: I think it's time for a last hooray. 
He thinks it is time to hunker down.
 Now, suddenly, he thinks it's time to fix the siding covering the mold that's been in the house for five years now. 
I'm still excited about this even if it is a little late. The weekend of june 26 j's getting some friends together to help clear out and clean up our basement so it's usable space. 
Hear that, people?
Actually, I'm not exactly sure what the goal is. I know now I can't set foot in the basement without sneezing wheezing and repiratory distress, which has gotten me out of rotating laundry:). 
THANKFULLY, and I'm so excited, we had a family trip planned for Weds. before the big news. The three of us are mooching off mom at a dental conference in DC. It's one of a rare few vacations the three of us have taken as a family.
We all ready have a tour of the capitol booked. We'll be going to the zoo and meeting up with a room mate from college, Cheryl.
The hotel has a great pool so during my rest period J and X can play.
After, or during, this, Both our anxiety will escalate as my abilities decrease or just in anticipation of therapy.
 I'll mourn and cry in my room, never showing I'm having a catastrophically depressed day for fear all I'll receive as support is a verbal lashing telling me how weak I am. 
It's hard keeping a happy face on to keep the peace, to keep a reasonable dynamic as a role modeled relationship for our son when we are under so much stress, especially with both of us being sick and in pain.
 He also needs to restart some type of treatment just not as severe as mine.
 J won't attend any of my appointments, procedures or treatments. My parents take over caring for me.
 I'm so blessed, so lucky to have them, but racked with guilt that I'm so reliant. I was diagnosed after leaving the nest. I thought my man would cover the majority of care, but my parents do. 
They take days off to travel and sit by my side. When they are unable I have great loved ones who pitch in to cart me around.
 J maintains the house now. He does laundry, dishes, grocery shops and organizes x's care while I'm out of commission.
 Luckily, x has gotten older and we've become acostomed to our roles over the years, but we still pray that sometime we'll get a break. 
I'm seeing my Boston team today.
 I tapered down to 10mg of prednisone last Thursday, but managed to jump up to 160lbs over the weekend. 
Who would have guessed?
I'll have more information on where we go from here, I'm hoping it's vacation!

5 comments:

Anonymous said...

Don't give up yet Hillary,you have worked to hard.

Bekah said...
This comment has been removed by the author.
Bekah said...

None of this is easy. I know that for a fact, but I do know what you're about to do is possible, because I've been doing it for over two years now. And, I have a whole fleet of friends who continue to do it -- even a fellow survivor who has reached her 16 year mark LIVING with this managable hodgkin's disease. True, she travels, and does whatever she has to do to stay alive. but these are our LIVES at stake here. When it comes down to it, this is what we do.

If you go to my blog, and click on 'Kim w/Clinical trials' or any of the kids who are on clinical trials... you'll find that most are 3+ years out from their transplants, leading a life that involves cancer, but also leading a life. They're still here -- as you will be too.

Here's Kim's link for those who are interested:
http://www.hodgkinsfoundation.org

Loraine Ritchey said...

I wish I had words that could help- or make a difference. I don't have any that don't sound trite or rah rah .... but I know from reading your writings just how loved you are , what a difference you make in so many lives including mine. Loraine

linda keenan said...

you mean you are actually applying to extreme makeover home edition?
not crazy - it's a great idea. ill let you know if i know anyone there. dont think i do - but good luck with that! it's a great idea!