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

Dubai Connection

The word from Dr. Macaroni (not his real name) took a lot longer to get to us than we expected.  Our Johns Hopkins Physician Assistant contact, Dawn, called last night.  It turns out Dr. Macaroni was delayed abroad.  Abroad was in Dubai, where he had been summoned to commit surgery and then wait until his patient recovered sufficiently to allow him to return.  Apparently, Dubai and Johns Hopkins have a “relationship” and when Dubai calls, Johns Hopkins answers.  I wonder what kind of insurance they have.

Dawn is wonderful about patiently explaining the latest finding and answering whatever questions we can think of as we listen and attempt to understand the details.  There has in fact been a small amount of growth.

Tumor: 1 - Karen: 0. 

Dr. Macaroni recommends that we continue to watch and wait for another 3-6 months to make sure that we have continued growth.  As he told us in October, radiation is only effective on living, growing cells, so their “livingness” is important.  Dawn explained that the tumor was still 3-4 mm. away from my brain stem.  Well that reassured me.  She seemed to feel that was fine.  At least that makes one of us.

Dawn talked about what was going to be available in terms of various types of mysterious radiation machines, decommissioned ones, new ones, but that has yet to be needed and decided.  Meanwhile, I have another few months to manage the symptoms, be grateful for how many good days or parts of days I have, and try other non-invasive alternatives.  Stay tuned.

With love,

Karen

Progress?

It looks as if the tumor is making a bit of progress, and not exactly in my favor.  On Thursday evening I sent an e-mail to Dawn, our Johns Hopkins Physician Assistant, seeking confirmation that my MRI CD had been received.  I pay attention to walking the line between annoying and advocate and ten days after “send off” seemed safely on the advocate side.  I expected an answer on Friday, but an hour after pressing send, Dawn responded: 

“Yes, CD was received, uploaded on 2/16 and read today. Prel read is of stable disease, though measurements are up just slightly. I will try to have Dr. Rigamonti review this Tuesday, 2/22 and get back to you. He has been out of the country and has a large volume to review. We do not need to do anything urgently but will give you our best recommendation for timeframe to consider treatment or another MRI.”

So, I should have some additional information and guidance next week.  Meanwhile life is always busy and interesting and I sometimes forget that my brain is ticking.

With love,

Karen

The Results Are In

Monday’s MRI shows no detectable tumor growth.  Short of the fulfillment of my magical thinking (it could have shrunk or disappeared) this is good news.  Now we have to send the CD and report to the brilliant Johns Hopkins doctors so they can read, interpret, and make recommendations.  I assume they will advise me to continue the watch and wait routine.  Unlike when we left there in disbelief in mid October, it is a recommendation I can now accept.  On difficult days I just want to be back to regular old pre-tumor days.  Fortunately bad days are infrequent and watch and wait is  acceptable. 

Monday was an interesting exercise in rapidly readjusting expectations.  I had rescheduled and double-checked to make sure the MRI technician on duty was the technician who did my first MRI.  When I had my blood drawn the week before, I made sure the nurse understood that the results needed to be at the Imaging Center by 11:00 Monday morning.  I watched as she wrote special notes on the vial and file.  Right.  As you may have guessed, neither of these two things happened.  Oh well, more small experiences in conceding control.   

Thanks to all of you who have been watching and waiting with me.  I know I have not gotten back to each person who asked me to let them know the results as soon as I heard.  Somehow, although I am very grateful that this tumor is only an Acoustic Neuroma and not something much more dreadful, it still sometimes wears me out.  

 

With great appreciation to all of you,

Karen

More Clanging and Banging

The next MRI date is set for Monday, January 31.  It’s all about size - larger, smaller (unlikely) or staying the same - who knows.  The technician who did my first MRI will be the one putting me through my paces this time as well.  He was so good at scoping out the tumor, taking appropriate pictures, consulting with the radiologist, and injecting the dye, that I wanted him to do the follow up MRI.  Since most Acoustic Neuromas are slow growing, the difference will probably be no more than 1-2 millimeters, the smallest detectible amount that can be read by the radiologist.  Controlling as many variables as possible seems important.  The MRI can be done and read here in Ithaca then sent to the doctors at Johns Hopkins for consultation.   

I am continuing to feel better most days.  Thanks to acupuncture, Chinese herbs, walking, PT, chiropractor, Essiac Tea, green powder, blueberries, my brain’s resilience, and everyone’s caring, I would be glad to continue to Wait and Watch for as long as possible.  I like getting used to feeling better.  Let’s not bring it on.

With love, 

Karen

Of Hands and Hearts

Dear Friends and Family,

Last night my quilt guild presented me with a beautiful hands and heart quilt they had secretly made for me over the last couple of months.  My friend Aafke, who can manage more in a week than most of us can in a month, seems to have coordinated the project.  Apparently some of the blocks were being made right under my nose at Casowasco but I of course, had no idea.  I was still in survival mode at the beginning of November.  The note below is what I wrote to thank them and explains what is happening around here.  I have great appreciation for the support all of you have offered. 

With love,

Karen

                                                                                     Photo by Kristin Thompson

Dear Friends,

Many thanks for the beautiful hearts and hands healing quilt that I received last night.  I could not have been more surprised or deeply touched.  Ever since this “health challenge” began it has been a voyage into new territory.  The symptoms were so present for the first two months I could not forget their intrusion for a minute.  Now, for the past two months, I often go about without remembering anything is amiss, my symptoms have so largely abated.  Life has become more normal with only intermittent reminders from “tumor central” that all is not well. 

In two weeks, I will have another MRI to see how things have changed, or remained the same.  At that time we (Ed, the doctors and I) will make another decision about where we go from here.  Because the tumor surrounds some important nerves, to which some damage is inevitable, postponing treatment if there is no growth is the option of choice.  On the other hand, if there is growth, postponing treatment is not advisable.  Since the tumor is probably slow growing, four months may be too short a time for the MRI to detect either.

I thank all of you for this beautiful and comforting quilt of support as I move forward on this journey.  I feel very lucky to have such warmth and caring to surround me.  It is a wonderful gift.

With love,

Karen