I Am Not the 99%

Ed and I have been out walking each day since Tuesday, me with my walking poles, Ed with his patience.  I am still pretty tippy and uncomfortable.  We have increased from two to almost three miles today.  It is not easy but I presume it is good for me. 

Today, I talked to Dawn, my Johns Hopkins P.A.  I learned that:
1.  Only about 1% of people have an immediate, acute reaction the way I did. 

2.  I can expect to see improvement each week but not each day the way I did Sunday and Monday.  (Tuesday, Wednesday and today have been about the same.)
3.  I may have to maintain a low dose of dexamethasone for a few weeks until this settles down, but perhaps that will be the end of it.
4.  People can take as much as 4 mg. of this stuff several times a day so my dosage of 1.5 mg. twice a day is reasonably low.
5.  We can play with the steroid level depending upon my reaction as I decrease the dosage. 

6.  Because this came on early and strong, it may be done by the time most people would be reacting, in another month - maybe.

Part of me would like to increase the steroid dosage and perhaps feel a little better, faster.  But the side effects of sleeplessness and hunger are just about manageable.  I am trying to practice what my friend Anne reminded me, “Healing takes time and patience.”  Choosing patience over faster progress for now seems like the best way to do it, even if it doesn’t always “feel” best.

With love,

Karen

A Little Worse for the Wear

To paraphrase Secretary of State Hillary Clinton, “This has been a difficult and complex week at 1252 Ellis Hollow Rd.”  I apologize for not communicating, but normal functioning has been mostly impossible.  When we left Johns Hopkins Dr. Rigamonti’s P.A. gave us the impression that if side effects occurred, it would be 3-4 weeks down the road.  We have found this not to be the case.  I thought it was because I was precocious but that myth has also been dispelled.  Today, we talked to Ron, our radiation oncologist’s nurse.  He was surprised that we had not been told that the intense symptoms I have been experiencing are well within the norm.  Great.

Ed did all the driving home on Wednesday.  I was too wiped out to help.  I had some functional time on Thursday, taking a walk with Ed, before giving in to intense fatigue.  I was optimistic on Friday and drove downtown for lunch with friends.  By the time I arrived home soon after 4:00, I didn’t even attempt to thread the car into the garage.  Ed helped me into bed with the assumption that I would feel better after resting.

Wrong!  It was the beginning of a tsunami of nausea and disequilibrium that lasted until Sunday morning.  As my father used to say, I was so sick I had to get better to die.  We were able to reach the Johns Hopkins, chief resident on call, on Saturday and eventually filled a Rx for steroids which I started at noon.  Sarah spent the weekend with us and she and Ed helped me with everything since I could barely move and certainly not unaided.  Buddy too has not left my side, periodically whining his worry. 

Sunday and today have been less intensely difficult but most normal life is on hold.  My friend Helen came over today to “watch” me while Ed went out to do some errands.  Still, being able to type this means I must be getting better so perhaps by tomorrow I can be left alone for some time.  If I have not improved significantly we will up the steroid level a bit.  It seems as if my body is doing an excellent job of coming to the rescue of a seriously radiated and damaged tumor, causing swelling and havoc in my head.  So in some ways we are right on track, just a little worse for the wear.

Thank you for all your caring thoughts and healing wishes.  I am looking forward to being able to answer and see you soon.

With love,

Karen

Done!

Thank you, thank you, thank you.  The treatment is over, the radiation is doing its job and we are back at our hotel room with tremendous gratitude.  I welcomed each of you and your healing messages into the treatment room with me.  You calmed me down and helped me appreciate the beams that must have been coming towards me.  I don’t know what else happened in there, I was a captive of “the mask” but it is glorious to be on the other side of this remedy.  We will be on our way home tomorrow morning and ready to resume our so-fortunate lives.  I feel as if everyone pulled me through and I can only say, thank you, thank you, thank you.

With love,

Karen

Healing Thoughts

A wonderful friend lent me two CDs for relaxation and healing.  I have listened to the meditation CD for the last couple of nights.  It has been very good for calming down and centering.  That part comes with a warning, “Do not listen to this CD while driving.”  We respectfully heeded that advice when we drove to Baltimore today.

Instead, we listened to the other CD (the one without the warning) called, “How to Prepare for Surgery”.  Although there will be NO actual cutting tomorrow, the CyberKnife radiation will be doing its powerful part.  An important lesson of the tape involved asking caring friends and family to send positive, healing thoughts as a way to promote and improve the effects of treatment.  Usually this would all be a little too “woo-woo” for me, but for now I am open to anything that might encourage and assist a positive and successful outcome.

So, dear friends and family, if you have a few spare minutes tomorrow between about 10:30 and noon, would you send me healing wishes and hopes.  You might remind me that:

         I am very fortunate to have an excellent, experienced team of medical practitioners helping to treat me.

         Radiation is like beams of light, giving the tumor new information about my need for it to stop growing.

         This treatment can and will help me get better.

         With help from my friends, medical and otherwise, I will be able to heal quickly and easily.

         OR – Anything else creative and positive you can send my way!

It feels more than a little funny to be asking this of everyone, but so many of you have asked how you could help.  I guess this might be the way.

With thanks and love,

Karen

Traveling Tomorrow

The time to return to Johns Hopkins is upon us.  We leave tomorrow for a now familiar trip.  I am scheduled for CyberKnife treatment on Tuesday morning.

David, his girlfriend Caitlin, and Sarah were here all weekend, leaving just a little while ago.  It was a wonderful birthday present and a great distraction from the upcoming trip and treatment.  Now it is time to get organized and packed.  If all goes as expected there will be only one treatment and we will be on our way home by Wednesday.  I'm looking forward to being on the other side of this journey. 

We have been showered with an abundance of caring.  Everyone’s thoughts, prayers, gifts and wishes are coming with us.  We’re packing heavy.

With love,

Karen