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

Sunday, March 7, 2010

Long time, no post, and so much to talk about.
Friday morning I took the last peaceful relaxing shower I'll have for months.
My central line was placed that morning. 
Central lines provide a huge therapuetic benefit. It's easy access to my venous system. I never have to worry about poking and prodding for ivs, which would delay my treatment not to mention hurt. It will ensure the cells I receive remain healthy and have not been damaged during the pheresis process. It will also speed up the procedure, cutting the time almost in half. 
This is why I'm getting a line.
If it sounds a little like I'm trying to convince myself this is a good idea, it's because I am.
There is also the fact the procedure simply can't be done with out it. That was a surefire sell point. 
The downside is I now have a constant reminder badge of honor of my disese on my chest. Every move I make I will now have to consider my lines. 
When I shower, the line has to be covered first and then kept from being saturated. When I dress I have to find clothes that will allow it to lay comfortably and hide it. I have to make sure it doesn't catch. These are the simple superficial irritations of having a line. 
But they are irritations. They are a constant reminder of my fragile state-of-health I don't want.
Xander has all ready started assisting in hiding it's presence. 
During his birthday party yesterday, I wore a scarf to not scare his friends and take the attention off him even though it was 50 degrees out (a heat wave) I've gained 40 lbs, am menopausal and on prednisone. 
The hot flashes had me dripping. My glasses were steaming, but per X, I was not to remove that scarf.
This morning we picked out a summer scarf for Cole's Birthday party.
The line also needs to be flushed daily to keep from clotting. If it clots, medicine needs to be placed in the line. If it keeps clotting I need to go on coumadin (a blood thinner) to stop it. 
The list of inconveniences go on and on. It puts me in a foul mood. Doesn't matter how many times a procedure is done, I still experience the same emotions. The same depression, anger and anxiety. I lay awake and jittery the night before.
I haven' even discussed infection. We're not going to go there. What is done is done.
Moving on to the good stuff.
Thursday X finally suffered an emotional breakdown.
I could sense it coming. What poor little boy has two sick parents and a sick friend?He would get teary eyed and angry at night. We would talk, rip magazines, newspapers, and try all sorts of management techniques.
Thursday morning he woke up talking about "Pennies for Patients" a Leukemia and Lymphoma fundraiser for Andy. He told me the paperwork was in his bag and he was giving him all his money.
I said okay and we made plans to visit him that night. He left for school relatively happy.
Well, I guess Andy weighed on him all day because in the afternoon he demanded to know, from the entire first grade class, what each and every one of them were doing to help Andy.
His great teacher, who has been such a support and blessing this year, Mrs. Th, started the kids working on cards for him.
But Xander had all ready gotten worked up. He started to cry. He crawled into his cubby, curled up in a ball and cried and cried and cried. 
He looked up at her with his big eyes and said, "I'm so sad. I just want to die."
Heart breaking.
Mrs. Th escorted X out still in tears to tell me about the days events. 
The "I just want to die" comment is not new.
We know that Xander is anxious and depressed. He's been tested and diagnosed. We have tried everything within our knowledge to make these situations as easy as possible on him. He's had individual therapy sessions. We've done family therapy and couples therapy to work on the dynamics of our home. We had the genius founder of a great therapeutic recreation group (TRAIL) work with him individually. He has had testing. He's read books. I've read books. He's taken karate. He plays sports, all sports, into the wee hours, until he's exhausted. He has a trampoline (thank you Donna and Paul).
What X needs is an easier life. 
But any suggestions to make this easier on him I'll take.
I'm just happy he vocalizes these feelings so we know when he is feeling severely depressed and can intervene accordingly. 
When X got in the car he was stillbabbling.
The care kit I had put in a plastic bag had tipped and spilled. 
He decided this meant I was a crazy, unsafe driver and told me so. He didn't want to drive to see Andy with an unsafe driver. He wanted someone else.
I reassured him the ticket was a misunderstanding (it really was. I thought the limit was 65 mph), and that I would go slow.
He finally relaxed.
I told him we could go pick up presents for the birthday parties he's going to this weekend, for Andy, and one for him. He started to relax.
Then he started to freak out that all those presents would bankrupt us.
X, like his dad, fixates on money as a form of safety and security. Everytime I set a budget, X thinks this means that is all the money we have in the world.
He started to sob and hyperventilate.
I decided it was time to explain to him about debit cards, credit cards, and credit. How else could he calm down?
Suddenly, his crying lessened.
"So,. . ." he though, "if we wanted to go buy a tv, we could?"
"Yes, honey, we're not going to, but we could." 
I liked his reaction. He was finally really calming down.
"We could even buy more. If I felt like going out and buying the car you showed me last night (during X's newspaper tearing escapade, he'd pulled out a blue, used pontiac grand prix he said he wanted at sixteen), we could just go buy it. That simple."
"Mom, can you turn up the music?"
That's when I knew the tactic had worked.
Thank goodness. He spent the rest of the trip screaming Kids Bopp at the top of his lungs. 


Anonymous said...

Happy Birthday Xander!

Anonymous said...

I'm so sorry you and your family are having to endure so much suffering.

I'm not a parent but it sounds like he's grieving the many losses he's had to endure over the last few years of your illness and now his friend. I pray for supernatural wisdom and strength for you and your husband in helping your son.

Anonymous said...

Happy Birthday to Xander and love and prayers to Hillary and Jon.

Rosa said...

Happy Birthday Xander! I hope that the lessons he has learned in his childhood - though anxiety-provoking - help him find peace in the long run. I am cancer free two years and am trying to share tips with people. My worst side effect from chemo was heat, cold sweats, and insomnia. I work for ChiliTechnology so I started using one of these and it was a great help to me: ChiliPad (it's a mattress pad that lets you cool the bed down to any temperature you set - it has a range from 46 to 118 degrees). I also went on an all organic macrobiotic diet, which really helped with detoxing from the chemo (and I've never gone off the diet, because I feel better eating this way than I did before cancer). The other thing I did that was really important to my healing was watch tons of stand-up comedy. I really believe laughter is the best medicine.