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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Saturday, April 9, 2011

Walking Out of the Fire

After weeks of acute suffering (even though there is nothing cute about it) I still haven't completely regained my footing. 

I still feel like I'm treading water. 

I'm putting out fires, but it's getting easier. We're not in a massive forest fire. We're just blowing smoke.

Weeks like this past month is where prioritizing needs becomes a necessity. We were running on death-con one. We've closed ranks to focus. 

Anything above and beyond survival is just stress. 

Of course, just when it's most necessary to prioritize, my mind becomes clouded, my ability to organize depleted by chemo, medications, stress and whatever else life throws at me.

As in the past with my hospitalizations, X has become ill this week with an intestinal bug that's kept him home with me. 

He's also started trying to sell the concept that he quit school, at the tender age of eight, and stay home to take care of me.

We're coping with that, but first, Of course, X's overall health, is a huge priority, and his post-hospitalization illness has become part of the process, part of the routine. 

When I'm seriously ill he is the stoic little man he is expected to be, but once I'm home, he needs some serious TLC. 

That's what I used to call the days he got sick after the stress of my illness "X's extra TLC days."

 If I was able (and I somehow find it in me. The maternal instinct is as strong, if not stronger, than the survival instinct), I would play supermom to him, reassuring him that, not only was I well, but capable of mothering him and caring for myself. This worked when he was younger and egocentric. 

With age, he now understands the seriousness of my condition and expresses all the overwhelming adult emotions that comes with monopolizing the energy of the sick: feeling guilt, sadness, lonliness, and hopelessness. 

It's obvious now his illnesses are often psychsomatic (caused by his emotions) or a result of IBS. 

This doesn't negate the legitimacy of his illness. He is ill, but usually within two days he recovers with reassurance but no anti-biotics. 

This has become a known part of our coping process. When a family member is faced with a life threatening illness, the whole family is threatened. The whole family feels the repurcussions, and for optimal healing and support, the whole family needs to be cared for.

So that's what I did on Weds. and Thurs.

With poor X's anxiety skyrocketing, Weds. we took him to his therapist who recommended a "Worry Box" where he can place his worries and we can write solutions on the back to choose from so he stops trying to quit school. 

She reiterated that this is not his job, as I had, but it's better coming from someone else.

I had tried to write out a schedule showing him who cared for me when, but none of this worked. There is nothing that can separate a boy from his mother if he doesn't want to be separated, no bribe, no toy, no vacation, no punishment, no threat. Nothing is as important to X as making sure I am constantly safe. 

As is appropriate with the "magical thinking" of his age, He thinks this will happen by just watching me.

Again, we're slowly finding a quiesi-resolve to this issue, or he's forgetting and moving on as I'm getting healthier.

However, Monday starts the cycle all over again.

I have a nephrostogram at 6:30 am to check the flow and function of my kidneys so I can possibly have the stent removed! Then it's straight to my heme team to prep for my second treatment with Bendamustine.

Since the chemo did not actual cause any of my problems last month we will increase the dose. I started at 60% of the recommended dose due to my sensitivities. Generally patients are started at 100% and slowly brought down. We're doing the opposite and slowly raising the dose. I'll probably have 70 or 75% the recommended dosage.

Then it's just prayers and waiting that all will go well. I'm attending a healing mass today at 4pm.

I have always wanted to have hands laid on me in healing in hopes the Holy Spirit will come upon me and ease my suffering.

I'm excited and confidant about any possible experience I may have this evening. Keep me in your thoughts and prayers.

1 comment:

Devon said...

You go girl!

The mother-son bond is amazing...and healing. :)