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 20, 2010

My Chemical Romancec



It has started. My chemical romance has started.
That 50mg of prednisone is getting to me.
I have been taking that amount since the 22nd of December. The fact that it has taken this long to interfere with my sleep and give me hyper manic jitters is a little disconcerting.
I was worried my adrenal glands could no longer be stimulated. If 50mg of prednisone doesn't do it, I don't know what will.
It's definately working. It's working to the point that I now need something in the evening to slow me down.
That would be 0.5mg of ativan, but that's just a start. I've finally come to a point where I can concede that these medications are necessary for my survival and quality of life, even if they do come with a social stigma.
I could tell the prednisone was doing its anti-inflammatory job from the vast improvement in my lungs and appetitite.
The main benefit was breathing.
Eating was just a perk. I had gotten a little on the skinny side, and it being Christmas and all, had a great excuse to pack on the pounds.
The problem is I have just kept on packing.
My hands want to be doing something every second. Cooking and eating are some of my favorite hobbies. It's a two-for-one deal.
That is until Jon and I realized we were going to get very fat from the muffins, brownies, rice krispie treats and cookie I was making on top of the four course dinners.
Cooking and eating can no longer be a hobby.
Thank goodness I ave art to turn to to satisfy my need to MOVE.
I have organized the house.
This was stage one in my recovery.
You can tell the order of my life by the order of my house and car.
If the house and car are chaos, so is my life.
The second floor is untouched except to throw piles of miscellaneous stuff in it during my periods of illness.
The healthy time is used to rearrange, organize, and purge the stuff that has accumulated.
When I first walk into the rooms after my recovery it's like a time warp. It's like stepping into one of those boxes that have been buried decades in the past.
No one can ever predict the last day they'll be doing something. Nobody says, "Oh, I'll start sewing this and then I will not return to the sewing machine for three years."
The scene of where I was immediately prior to my chemotherapy in August is still set.
I was taking steroids and motivated.
I was motivated enough that I had decided Alexis and Xander may move upstairs if they had rooms side by side.
I decided the kids could have the two small rooms.
I was in the middle of moving Xander's tons of toys.
Then everything stopped. I got sick. The second floor was a big mess, and Xander resumed living in our room.
The three of us all live in one bedroom in our large four bedroom cape.
I thank God I was smart enough when we built the house to want a mastersuite on the first floor.
That master suite has a bathroom five feet from my bed. It has a twin mattress at the foot of our bed, three bureaus, a night stand, a walk-in closet, my husband's closet, and a linen closet with space to spare.
Damn, are we lucky.
We all live and function day to day there.
I've been ambivalent about having a "family bed" or "family room" since the decision was made with my diagnosis; however, it is the right decision for us.
Having the presence of one another together provides the sense of security we lose when I become ill. We are all able to watch over each other day in and day out.
The automatic question that comes with this decision is how do J and I get our play time?
Hhhhmmmmm.
I'm blushing.
As I said, we have a big house. There is no rule that ties us to the bed. IF not, mum is the word.
There is another word that has been more catastrophic on our love life, and I bet you can guess it, that's the "C" word.
No, it's not a dirty for letter word, but if you want to hear a joke about that I've got one.
What is a four letter word ending in "unt" that describes a woman.
NO! you dirty people.
I'm talking about an "Aunt."
And the nasty "C" word is cancer.
We work it out because we love and are dedicated to each other.
Speaking of love and dedication, X's first phone call ever to a girl has blossomed into them calling each other "boyfriend" and "girlfriend."
I don't know how I feel about this.
I'm ambivalent. I don't want my baby growing up. I don't want him distracted by females at this age. It's inappropriate. He needs to focus on READING and MATH.
But the phone call brought him so much joy when I couldn't.
I feel so much guilt for bringing suffering into his life. I also worry that if I don't see these things happen now, I'll never be able to see him.
I know that's selfish.
I don't want him to grow up to quickly, but dammit, I want to be a part of that experience.
It also gave me the opportunity to discuss telephone manners, etiquotte, and introductions.
We've been working on manners a lot recently.
I have explained to him the golden rule (do unto others as you would like done onto ourself). I've also explained to him that the basis of most religions is to love one another as you love yourself.
If you have this basic tennant you can be a good person.
Then, in good old Ford fashion, we decided to make an experiment using his perfect manners and happy demeanor.
We theorized that if he approached people happily, with good manners and laughter they would approach him the same.
So far, so good. He's been a much happier child.
My feeling so well probably has something to do with it.
The week Jon spent away in San Diego also helped blossom our relationship again.
X now sees me again as a viable, capable caregiver who can meet his needs.
I haven't been able to be this mom while I'm sick.
He is now on my schedule, walking at 6:30 am and taking his time in the morning before school. He takes care of the dogs (he has been babysitting for my parent's dog), gets himself dressed, and scraps the snow off my car in the morning.
He has turned into quite the helper since I banished video games in the am. I do allow speelingcity.com in the morning if there is time.
All I have to do is make sure he gets his nutritious breakfast.
I went on a tangent there for a second.
The point is, X's "girl friend" is coming over for a playdate tonight.
I've been badgered about this since November. I'd postponed it. I hadn't talked to the girl's mom. I didn't know how she felt about the two of them playing.
I spoke to her last night, and low and behold, small world, we know her!
J and I coached her older son at soccer.
I don't know how this well go, but Xander is excited through the roof. He's been playing what he'll do with her every second since last night. He's been jittery and running around he house looking for activities.
I, of course, used this to my advantage to get some chores out of him.
Funny, as soon as we set the date, Xander notified me that the laundry would need to be put away.
He didn't want his girl to see our underwear.
Underwear has become a very private personal thing.
I accidentally left an outfit of Lexi's out on New Years eve when he hosted a friend for the sleepover and did I hear about how I left lexi's undies in plan view.
I was told never to allow that to happen again.
He cleaned the house, picked up his toys, and the play date is set.
It's going to include playing outside, maybe taking a walk through the trails, building a snow man, or sledding.
Then they are going to play on webkinz.
Nana bought Xander a hippo on her travels to FL. Maybe they'll play the Wii or we'll do arts and crafts or spell city.
He's got all sorts of plans.
He also knows that this is a little different than just a friend and they'll be supervised continuously on the first floor.
Wish me luck. I can't believe this is happening. I'm off to do art.

2 comments:

DebA said...

That is too cute. What a wonderful thing to get to see him so happy! I totally get the house cleaning thing. It is truly the sign of being okay. I sure hope that his play date goes well. I feel like reading your blog I have watched him grow up...good for you and for him.

Anonymous said...

I'd almost pay cash for a ticket to watch this one. I seem to recall comments made about you "coloring ourside the lines" ... about you being independent & "doing it your way" ... my guess is the apple didn't fall far from the tree. You may well understand the other side now. ;o)

That cracks me up!!

Thanks for sharing.
F