Long Time, No Blog!

It's been a while, so I thought I'd catch the readers up on my progress.  I've finished 18 of 30 radiation treatments.  I haven't experienced much in the way of side effects.  The hair on the right side of my head is definitely starting to go, but that was expected.  The only real symptom has been fatigue. It's hard to know how much of that is from radiation, or still from surgery or the medication.  It's probably all of it.  I have been trying to push myself by walking longer distances.  With regard to work, I've been going in for about 2-3 hours a day, before and/or after radiation treatments.  When 

I get home, a long nap is usual.   

Prior to surgery, I had lost about 15 pounds.  After surgery, I gained it all back and then some due to the steroids that I am taking to avoid swelling.  Now that the steroids dose has been lowered  and the Chemo side effects have kicked in, eating has become an issue.  The Chemo causes nausea at times, but it seems like eating helps  This seems like an easy fix, except, finding something that I would even consider eating is a problem.  When I find something that works one day, I may not want to even look at it the next.  It is very similar to being pregnant, so I'm told.  There are days that are tolerable and others, like yesterday, where I can barely get off the couch.  

Things in the house have been difficult.  Last week, Thomas had Strep throat and Sue spent last night, throwing up, due to an apparent virus  We've been spraying Lysol and staying away from her, hoping that the rest of us, especially me, don't contract it.  My immune system is compromised due to the radiation and Chemo, and I really don't need to get sick.  

So, I guess that sums it up at this point.  I push ahead and try to keep positive.  During the radiation treatments, I pray and visualize a bright white light coming down from heaven killing each and every tumor cell.  Thank you for all of your prayers and support.  Please keep them coming.  

It's late, so please excuse any grammatical errors!  :-)

The Radiation Suite

The "Radiation Suite" at MSKCC is an interesting place.  The decor is soothing and the smiling faces behind the desk welcoming.  Since Jon goes five days per week for six weeks, faces become familiar quickly.  The staff and the patients...there are lots of patients.  There is something comforting about being there.  The glances you receive are filled with knowing and compassion.  Jon may not notice all these things because he is focused on getting through the treatment, battling the anxiety and fighting to stay afloat in the abyss of his diagnosis.  I notice the faces.  I hear the stories.  There is a woman in a sling who falls asleep easily and struggles to get out of her chair when called for treatment.  Her hair is growing back following chemo treatments and the soft-spoken man calling her name sits with her, comforting and assisting as she stands to walk toward her radiation room.  I pray for her.  There is an elderly man in a wheelchair with his adult children.  He can't hear well and at times struggles to breathe, so they pound on his back and call his name.  I pray for them.  There are two women who come with candy and drinks to surprise their friend who has both radiation and chemo.  They laugh and hug and celebrate their friendship.  I pray for them.  There are a husband and wife.  Her bald head is covered and she appears drawn and tired.  Her husband rubs her back and stares into space.  When she leaves for treatment, he slouches in his chair, rubs his face and closes his eyes.  I pray for them.  Those are just a few of the people I see that come in and out of the revolving door of the radiation suite.  They are part of the MSKCC family, our family.  They didn't ask for this.  They don't want it.  They do it because they have no choice.  Some of them may not be alive next year or even next month.  Some of them may finish treatment and never come this way again.  I pray for them because regardless of the outcome, their lives will ever be the same.  I pray for them because I understand.  We are forever changed by this journey, some for better, some for worse.  I pray because that is my power...

1st Week of Treatment

So, Friday I completed the 4th of 30 radiation treatments.  Thus far, it has been uneventful.  When I am brought to the treatment room, I lie down on the table.  Sara, or one of the other techs, guide my head to the table.  They properly position me and place the cast mask over my head and snap it down onto the table.  Although I'm curious as to the function of each part, and will probably ask at some point, there are many moving parts of the big contraption.  They move around my head throughout the treatment.  There's no mistaking, however, the 10, or so, second intervals when the radiation is actually being administered.  It is at these times when I have decided to pray the Hail Mary to myself and visualize a bright white light entering the top of my head and disintegrating the tumor cells.  I have faith that the help I'm praying for is being given, but it is also very comforting to me psychologically, and it gives me something positive to focus on, rather than the side effects that are likely to come over the next several treatments.  I've been told to expect hair loss on the right side of my head, the skin will become very sensitive, dry, and itchy, similar to a bad sunburn.  I may have headaches, and increased fatigue, will almost certainly become an issue.  Although these are short-term effects, I worry most of the longer-term.  Will I notice cognitive deficiencies and how will this effect me?  Even prior to this recent course of treatment, there are times of, what I call, extreme short-term memory issues.  This means that the thought that had entered my brain of what I wanted to do or say is gone in a matter of seconds.  It is very frustrating and embarrassing at times.  Word retrieval can also be an issue, but not as frequent.  Will any of this get worse, and will there be more cognitive effects?  We'll have to wait and see.  Of course, the Doctor and nursing staff give you all of the details , with all of the possible side effects, everyone's experience varies somewhat, so I'll keep praying and hoping for the best....keeping in mind that THE BEST would be that the radiation and Chemotherapy completely kill every remaining tumor cell.

The Chemotherapy drug, Temodar, is no stranger.  I have been through a course of 12 monthly treatments and then another 6.  Although, my oncologist had told me that most people handle it very well...it still sucks.  I am certain that there are MANY other cancer patients that have much worse experiences with their treatments, however, I can only base mine on my own experience.  Temodar is administered in pill form.  It sounds pretty easy, but I hate every second of it.  The recommendation is to stop eating about an hour prior to taking it, take an anti-nausea pill....wait about 30 minutes and then take the Temodar.  This is recommended because sleeping while the drug is most active would help with nausea.  All of this makes sense and isn't a big deal, but the hour or two leading up to it sucks.  Physically and Psychologically swallowing those pills is the worst.  I'm not the best pill taker to begin with, so this is difficult.  When going through the traditional Temodar cycles, I'm given five evenings of pills.  Following this, I'm off for almost a month before the next round.  It's been helpful that I'm able to talk myself through the five nights, by thinking, "ok, only 3 more nights....etc"  During radiation, I am being given the same Temodar, however, the dose is lower.  Sounds great, except I have to take it each and every night.  There's no looking forward to being finished with a round.  The "round" isn't finished until the radiation treatments are.  Worse than that...a month following the radiation, I go back to 6 of the traditional cycles of Temodar.  Needless to say, I am having a hard time wrapping my head around how I'm going to get through this.  We're talking January before this is finished.  It's depressing and I'm having trouble finding something external to focus on to get me through.

JML

Footprints

I'm sure there are few who have never read this wonderful poem.  It's one that I've thought about on an almost daily basis.  It is such a comfort in those times when I feel helpless, and even a few times, hopeless.  I've often heard stories of people going through challenging life circumstances, where they are characterized, by never having said, "Why me."  Although I'm not proud of it by any means, I definitely have moments of, "Why me."  It can be a very easy place to go, and it is a very lonely place.  One may even wonder if what they are going through is some kind of punishment.  As both of my children have certainly said when being reprimanded, "It's not fair!"

For me, this poem provides a crystal clear visual image to focus on.  My choice would certainly be to remain in a place of defiance, where my thoughts are "I'm going to kick this tumor's butt," and the like, however, there are times when I can't.  When I'm stuck in that lonely, helpless, or hopeless, "Why me" place, the image of being carried is so powerful and comforting.  Even though we may be years removed from our childhood, we still have that need to be carried.  It's the ultimate support and comfort.  When I am at those lowest points, and I visualize the one set of footprints in the sand, there is no doubt that He is carrying me and will never let me walk this path alone.

-JML

Walking...

"Faith is not the absence of fear, but the courage to walk through it."

We are walking...thank you for walking with us. 

Go Fund Me...

Every time I go on facebook, I see Go Fund Me pages in support of various different people.  All of them have stories, events in their lives that have brought them to a place of need.  Two weeks ago, a co-worker asked me if we needed a Go Fund Me page.  I hadn't really thought about it, but quickly replied no.  Then, as we prepared for Jon's surgery, people kept asking us what we need or how they can help.  Well, to answer the question, yes...I want a Go Fund Me page, but I don't want money.  I want a fund of sunshine, so when the days are cloudy and Jon can't find the light, it's there.  I want a fund of smiles, so when Jon's eyes are sad, I can pull out a smile to brighten his face.  I want a fund of energy, so when Jon is worn out from treatments, he can still play catch with the kids.  Realistically, we have those funds...they are the cards, notes, calls, messages, and dinners that show up when we need them.  We know there are going to be really hard days, but those funds, the kind worth more than any amount of money, are the sunshine, smiles, and energy we need to face another day.   Thank you...for giving us just what we need!