Buddy's Passing

Dear Friends,

Last night, I kept waking from a dream that everything in the world had changed; no visiting with family and friends, no phone calls, no mail delivery, just sterility and isolation.  As I pawed through the meaning, I remembered that Buddy was no longer with us and nothing would ever be quite the same.

Especially during these past nine months, when much of my world has been defined by our house, Buddy has been my most constant companion, preferring to keep me within his line of sight at all times, only resting when he could be within a few feet of my body.  Except when he was in the backyard, taking care of business or eating deer poop and compost, being home meant being with Buddy.  (Ed never was able to build a compost fence that he could access but Buddy could not.)

Yesterday I kept my promise to Buddy and myself; that if he was ever clearly suffering I would not ask him to linger any longer than it took to make sure his condition was irreversible.  After weeks of an incurable cough, it was clear that he had gone from being a 12-year-old puppy to being in some form of organ failure.  All the signs of distress materialized within two days and we put him down yesterday.

For those of you who walk with me and Buddy along side of us, you know his enthusiastic puppiness, the spring of his step, and his penchant for pausing to savor multiple “environments”.  And for those of you who are not dog lovers and wondered why after twelve years we had still not been able to train him to not carry on every time someone came to the door, the barking of greeting is over.  He and I were so intertwined that his absence is almost as clear as his presence.  Yesterday was a very sad day and today feels much the same.

Sarah spent the day here and slept over last night.  Buddy's loss has been difficult for her as well.  He was her puppy and the greeting they gave each other every time Sarah walked in the door was to be envied, in both directions. 

Buddy was our perfect dog AND he was Trouble with a capital “T”.  He was the grand opportunist.  He almost never did anything untoward when we were home, but oh the trouble he could get into the moment we left the house.  “Dog proofing” became both a science and an art.  Anything food - within reach or jump - was vulnerable.  Even if we did not notice and correct an errant placement before we left the house, Buddy was a master of detection. 

Today’s quiet, without the clicking of Buddy’s nails, the watching out for him underfoot, and the company of his attention is new and unwelcome.  He won’t be around if and when my symptoms abate.  His enthusiastic devotion is already missed.  We are so lucky to have had him in our lives for the past 11 1/2 years.  Now we stumble on without him, my wonkiness a little more noticeable because of his absence, my appreciation of his spirit undiminished.

With love,

Karen

More Like a Stew than a Line

It has been a challenging couple of months.  I envisioned myself coming back from Denver renewed by the visit and successful accomplishment of the trip and getting better.  Why not?  When this did not happen I followed my Hopkins Physician Assistant’s advice and upped the steroid level.  It was the doctor’s diagnosis that we had not yet brought down the tumor swelling and had to hit it harder.  I had resisted this approach hoping that time would be an effective healer.  But after so many weeks my healing was stalled and I was discouraged.  Being a non-compliant patient, when my source of information is 300 miles away, is risky business.  I followed their advice.

If the higher steroid dosage had a positive effect on the tumor, it has been beyond my ability to discern.  Instead, the mixture of steroid side effects and continued radiation affects have brought an unintelligible, toxic stew.  I had imagined a graph with two lines beginning in the west.  As the Dexamethasone line heads southeast, I expected the “feel better” line to head northeast. 

Unfortunately this has not been the case.  There are so many factors: the tumor, CyberKnife radiation, swelling, Dexamethasone, steroid side effects, and who knows what else.  Occasionally I have a good day with nothing but the ever-present disequilibrium and fatigue.  Those days are the easiest and most pleasant.  Most of the time I have a batch of additional symptoms that test my determination. 

I am now on day three of zero steroids; three cheers!  It has taken me a long time to get here and it is a welcome milestone.  Perhaps soon I will begin to see some consistent symptom relief, just not yet.

With love,

Karen

Colorado "Rocky"

On Sunday afternoon, Sarah and I arrived in Highlands Ranch, CO. to visit my parents, traveling on  reservations made long before I knew I would need treatment.  For the past four and a half weeks, this trip has been my distant if somewhat doubtful goal.  The day before leaving home I walked two miles with Ed, Buddy's leash in my hand, instead of my walking poles.  I knew that if I could do that, I could wheel my small red duffel through the Detroit light tunnel with Sarah and make it to our connecting flight. 

It has been a challenging month.  Once the acute reaction was brought under control by steroids, satisfying progress was elusive.  Ed could see me getting stronger and doing more, but from the inside out, disequilibrium, fatigue, and swollen head symptoms are discouraging and unrelenting.  I have focused on appreciating everything I could do but the promise of temporary is hard to trust when it seems unyielding.  Finally, despite unappealing side effects, I took the advice of my Hopkins P.A., upped my steroid level from very low to low, and magic - I'm still wobbly but I'm wobbly in Colorado!

Traveling to visit my parents has been Sarah's spring break ritual since she started college.  It is wonderful that she loves to do it and Ed and I used to join her in Phoenix.  Since Bill and Elaine moved to the Denver area 2 1/2 years ago, just Sarah and I have made the trip together.  Their senior living apartment is much smaller than their house and can only really accommodate two at a time.  Visiting with Sarah is a special treat and being able to be here together is a joy.

I thank you for thinking of me, asking how I am doing, and having the patience to remain patient with me while I recover.

With love,
Karen

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

There and Back Again

We arrived home yesterday afternoon, having accomplished all the Johns Hopkins tests, simulations and mask making that needed to be done.  The highlight of the trip was seeing the amazing Liam - Cleo and Jack’s extraordinary six-month-old baby.  Some families are lucky.  Wonderful parents magically collide with an amazing child and the match is perfect.  We saw Liam twice and enjoyed every baby minute.

The downside was experiencing what happens when a couple of IV insertions go wrong and my best calm down techniques are as effective as a sprinkler system during a nuclear power plant melt down.  Although I have had four previous MRIs in Ithaca, my knowledge of what they were actually doing was apparently incomplete.  Here, after the first round of no-contrast, they slide me out of the machine, head immobilized, vision blocked, and tell me not to move.  I remain completely still as I wait patiently, if not totally calmly, while the contrast fluid is inserted. 

I was therefore surprised when, while sitting in the blood-drawing chair before the CT scan and MRI, the J.H. technician told me she was going to insert an IV.

“Really,” I said, “they don’t do that in Ithaca.” 

“Oh yes, I'm sure they do,” she answered quite assuredly. 

“Oh no,” I said with cautious self-confidence. “They just inject the dye with a syringe.” 

“That’s not possible,” she replied.

Suddenly it occurred to me that she might be right.  I know that the accuracy of the MRI depends on my not moving.  In Ithaca, they roll me partially out of the MRI machine, stick me with something sharp that hurts, tell me they are injecting the dye, tell me they are done, remove whatever it is that hurts, and roll me back in for more clanging and banging.  It seems I have imagined what they were doing but didn’t know it.

The first IV insertion did not stop hurting, a sign that it was not right.  “Sorry,” she said,  “we’ll try again.”  The second time hurt, but not as much.  “Good,” she said, “this one is in right.”  Then there was something about flushing, and I looked for a minute, which I never do and was not a good idea. 

I told her my stomach was getting upset.  Unfortunately, my calm self could not make it go away and my not so calm self had other ideas.  It is incredible how many things we can think simultaneously:

1.  Just breathe calmly; this will pass . . .

2.  It’s good this is happening in a hospital; they know what to do here . . .

3.  This is how supposedly simple things go really wrong . . .

4.  It sounds like the alarm in a fire station is going off . . .

5.  It certainly is quiet in here . . .

6.  I don’t like how this feels . . .

7.  I wonder why I can’t make this stop . . .

8.  I don’t want to cause any drama . . .

“I'm leaving," I said, metaphorically.

“Oh no,” she replied, “don’t leave, keep your eyes on me.  Don't close your eyes.  I have to check to see if your blood pressure is too high.”

“No,” I managed to breathe out, “too low.”  This time I was right.

No more details, but after some time and further disruption I came back, metaphorically speaking.  A third, successful IV was started, and tests resumed.  They molded an immobilization mask that I wore for the CT scan and MRI.  It will be used in a couple of weeks for CyberKnife radiation treatment.  It somehow bolts to the table (I will not pretend to know how) and is so tightly fitted that the grid imprint on my forehead would have gained me entry onto the Star Trek Voyager.  When this is done I get to take the mask home.  Perhaps I can use it as a hanging planter.

With love,

Karen

Baltimore Again

It has been almost a year since I last wrote about what was happening Acoustic Neuroma-wise because, well, normalizing life has been an important focus.  Watch and wait was a surprise when it was originally suggested in October of 2010 but became a regular part of our lives until just a couple of weeks ago.  A six-month MRI “check-up” showed considerable growth and Johns Hopkins recommended that we meet to discuss treatment. 

We arrived in Baltimore yesterday and met with Dr. Rigamonti and Dawn, his Physician Assistant, this morning.  Dawn spent a lot of time explaining our options and treatment.  Dr. Rigamonti stopped in for just a minute, on his way to giving a lecture.  Since we had met with him for 40 minutes when we were here in October, 2010, not having time with him now was fine.  Dawn has been able to answer all our questions.  Compared to a lot of what they see, a small, benign tumor may be tricky but it is a relatively small challenge.

On Thursday morning I will have an MRI, a CT scan, and be fitted with an “immobilization mask”.  None of this is invasive, just a bit trying.  Over the next two weeks, a radiation oncologist, a physicist, Dr. Rigamonti and some other very smart people will take this information, fuse the two images, and come up with a plan for stereotactic radiosurgery on March 6.  Using a CyberKnife they will deliver very precise beams of high dose radiation to the tumor, while supposedly sparing surrounding tissue and nerves.  We won’t know until a couple of days before the treatment how many treatments I will have, but one is entirely possible and five sounds like the maximum. 

So that’s it.  The drama factor has greatly decreased over the past 16 months.  I am ready to have this done and move on to the next challenge of life, aging, and change.  Many thanks for everyone’s concern and caring wishes and especially to Ellen, Judith and Roberta for taking care of the renowned Buddy while we are away.

With love,

Karen