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."

Get a playlist! Standalone player Get Ringtones

Saturday, August 22, 2009

I’m awake.

I’m up.

At least I think I am.

I am in that limbo somewhere between being awake and being asleep.

I could really go either way right now.

I have been mostly asleep since I returned from the hospital around one yesterday.

I dragged myself out of bed to go to the in-laws to deliver lexi’s back-to-school clothes.

It was worth leaving my cozy sheets to see her put outfits together and ponder which look will be best for the new year at her NEW SCHOOL.

Yes, her mama moved. Lexi is starting yet another new school, but at least she’ll look good.

Then I made it back a couple hours later to pass out again.

I did wake up at 7am, the time X dictates I wake up.

Being six, he understands that I’m not feeling well.

He is still not feeling well. His poor stomach just won’t return to normal.

We snuggled watching Scooby Doo, me drifting in and out of sleep.

He’s going to kill me for writing this, but at one point I looked into the bathroom only to see my naked little man lying on the bath rug, naked, butt in the air.

“What are you doing, Bud?” I hollered out.

“I have the toots.” He replied,sadly.

“Well, how come you’re in there?”

“They smell bad and I don’t want to make you sick.”

He was right. He did smell and the wrong butt blast could have sent me hurling into the toilet, but just knowing that he had made the conscious decision to exile himself from the bed while he felt sick for my health was to much for my mothering heart.

I got h im to come back into bed.

Somehow I did manage to get him dressed and prepared to get him out the door when mom-in-law arrived at 8:30, but that doesn’t mean I ever woke up.

I think the treatment, taking care of X, and my procedures yesterday have caught up with me.

I need to prioritize my energy.

My medi-port placement went smoothly.

The team was fun. They practiced like I used to. They had fun, treated it like it was a sport and they were in it to win it.

They even asked if I was concerned about scarring.

How cute, seeing as my neck is one diffuse scar, but it is the thought that counts.

Once I was knocked out for the procedure I was out, nice and comfortable.

Then it was off to see palliative care.

I’ve officially been trying to sign on to their care for a while. I think I’ll hugely benefit from professional management, I can’t waiat to see their magic.

Here is another special event for the “oh-no-she-didn’t-cancer-chronicles.”

After my procedure which uses “conscious sedation,” a combination of versed and fentanyl extremely effectively.

I was given the minimum amount of time to chow down some food (which helps me become more cogniscent) and recover from the anesthesia and preodeure before I was wheeled down for my meeting with Marie from Palliative care.

No problem, I like my appointments consolidated.

Little problem, the whole idea of conscious sedation is that the patient is comfortable, the procedure is painless, and the patient will come out untraumatized because they don’t remember any of it, but the patient still has the capacity to talk and rely if they are feeling any pain.

These meds don’t wash out of the system with a snap of the fingers, two breadsticks and a side salad, but whatever.

My meeting with Marie turned out to be a collaborative meeting with 60 minutes who had been tailing her for the week trying to find an angle to do a report based on palliative care in light of the possible upcoming health reforms.

Lucky me, I made on to the list of interesting people to talk to.

Unlucky me, I was high off my ass on this combination conscious truth serum that makes me just talk away.

I know the producers were not searching for the world’s most sober cancer patient.

They were interviewing palliative care patients.

I am pretty sure they at least thought the patients would remember them and what they spoke about.

Guess who doesn’t?

I do remember the producer and the assistant producer.

How could you not?

I would really be out of it then.

But give a girl a break here, I had chemo on Monday a procedure on Thursday where I’d been given “conscious sedation drugs” that’s entire purpose is to make a person talk but forget what they said.


I know we talked. I know it went well. I also know it went well for an entire 60 min!!!

What I don’t know is what exactly I said and how coherently and effectively I said it.

There is my big chance to talk about all the devastation and stress I’ve been put through my the insurance industry and medical black holes, but I can’t get it together.

I do know that I was my regular old, happy-go-lucky, go with the flow, the health care system is wrong and must be fixed immediately self.

I just don’t know exactly what I said to convey these points.

The two people in the room with me, Dad and Marie ARNP, are not people who would ever say I said anything wrong.

Really, what good would it do.

So I’ll be left wondering.

I am certainly sure that I am probably the only person they spoke with who instantaneously forgot what we talked about as soon as we left the room and I became focused on that sleep I wanted so badly.

C’est Le Vie.

Anyway, I am really praying/hoping/crossing my fingers that they liked me enough to come back around.

I certainly enjoyed them.

No comments: