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Why I have not been around

by: teacherken

Sun Feb 03, 2013 at 10:17:40 AM EST

( - promoted by lowkell)

Last Sunday evening at 6:10 my wife and I walked into the MRI section of Virginia Hospital Center in Arlington.  She had been having severe back pain and in order for her physician to make a referral to a pain management specialist an MRI of the affected area was a prerequisite.  

She returned home from the hospital after 7 last night, with both of our lives changed forever.

Some of you have been following our saga.  If you have not and want details over time, you can go to my user page at Daily Kos and begin with the posting on Sunday 1/27 and simply read those with lots of comments through Friday 2/1.

Or you can continue to the extended text where I will offer a more succinct recounting.

teacherken :: Why I have not been around
When the radiologist examined the MRI, he immediately took some contrast pictures, then began making phone calls, then came out and told us my wife needed to go to the emergency room immediately.

Upon arriving, they gave her steroids, then took her to a CT scan, then admitted her to the 7th floor, where she remained in her room except for further xrays and then treatment until she was discharged last night.

The MRI had detected a mass at the juncture of her thoracic and lumbar spines, and a severe narrowing of her spinal canal to the point that had she slipped or fallen or possibly even twisted suddenly she could have snapped her spinal column.

All the immediate evidence was of metastatic cancer.

By the next morning we were talking with a neurosurgeon and the prospect of spine surgery as early as Wednesday was being raised.

Except they were somewhat puzzled.  The CT scan had revealed no evidence of any lesions except in her spine, the only thing out of the ordinary in her organs was an apparent cyst on one ovary, and ovarian cancer rarely if ever spreads to the spine.  It was far more likely that there was breast cancer that simply was not showing up.

Further testing was done, and along the way over the next few days an MRI of her complete thoracic spine was done.

On Tuesday, which was her birthday, they did a biopsy of the mass to examine it.

In the meantime, the steroids being used to shrink the mass were causing an elevation of her blood sugar, at least temporarily a diabetic condition.

She was told  eventually that the good news was that this was probably not metastatic cancer, but rather a blood-based cancer.  Many of these are readily treatable.  We were told there would be no surgery before we had a final diagnosis, and in the meantime she was going to be fitted for a back brace she would have to wear except when she was in bed -  if she needed to go to the bathroom she would first have to put it on.  She needs help to put it on or take it off.

During this time it was fortunate that we lived just about a 5 minute walk away, because I was at the hospital 20+ hours a day, walking home to care for the cats, and to check on the mails.

We were told last Wednesday that the surgery we thought might happen Friday would not be possible, because the spine was not strong enough to do anything to help it at this point, that the surgery was simply too risky.  She was scheduled to begin radiation treatment that afternoon, with the steroids continuing.

By then we have enough of a preliminary diagnosis to begin planning, and the final pathology report which her doctors received on Friday confirmed what we were told on Wednesday.

As of now she has had 3 of a planned 10 sessions of radiation therapy for this round.

She has been taught how to monitor her blood sugar and give herself insulin, both of which were done last night after returning home.

She will be wearing the back brace for months.

She cannot drive herself for the foreseeable future, both because of her medications and the risk to her back even with the brace.

We meet with her oncologist on Friday morning.

Until we complete this round of radiation she is not to be alone -  I am taking advantage of the Family and Medical Leave Act to be with her for the next two weeks.

We are fortunate to have many resources -  her sister is a physician's assistant in primary care, her roommate from college, who is also her closest friend, is a graduate of Hopkins Medical School and the former medical director of Glaxo Smith Kline, and a good friend from the church where we were married just retired from NIH where his research was on blood-related cancers.  Although his specialty is not exactly what she has, he has offered to help guide us through understanding.

Her condition is not immediately life-threatening.

It has already been life-changing for both of us.

It means that she is my greatest priority.

We have the confidence that we can get through this.

We have been overwhelmed by support an by prayers which we know have made a difference.

Our support community is family, Daily Kos, the school where I work and the one at which I used to work, her office, her church, my Quaker Meeting, various internet groups in which I am active participant, and an ever-widening circle of friends.

We know we are not alone.

We are learning that we need to let go and allow others to help us.

There is no evidence of cancer anywhere except in and along her spine.

The prognosis is good, including a real chance for remission.

Others with relevant experience are sharing with us.

We know that chemo will be coming soon enough.

We know people who have undergone similar things.

One couple we know the life has lived with stage 4 breast cancer for several years.  The first flowers we received were from them and from her brother-in-law who is temporarily working in DC.  

We have had people volunteer to relieve me.

Friends have offered to travel from MA, NY, NJ, and PA to help us.

We feel loved and supported.

We are challenged, but we are not afraid.

And had we any doubts, we are now fully committed to one another for all eternity.

Two decades ago my wife strongly suggested I explore leaving work with which I was not happy to explore teaching.  She made sacrifices to enable me to do so.  I have said that she saved my sanity and quite possibly my life.

She says I am now returning the favor.

Except that she is still giving to me - I am finding depths in myself, patience, gentleness, that I did not believe I was capable of having.

I will continue to be active on matters that concern me - education, human rights, the environment.

I am now ever more passionate that giving tax breaks to corporations and millionaires while still so many Americans lack access to the wonders of American health care at its best is immoral, and I will not hesitate to speak out.

She is a federal employee.

We have superb benefits.

We are very close to the best hospital in the DC metro area, one that is in the top 10% nationally for neurosurgery should that become necessary.

A hospital whose staff was for the previous six days our lifeline and our shelter.

I slept on the couch in her room.

We are lucky.

We know it.

And now we go forward.

I apologize for not keeping this community informed, but we were more than a little bit overwhelmed, and I hoped that most who know me would be likely to read what I wrote at Daily Kos.

Thanks in advance for your friendship, your support, your prayers, your love.


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I do not know if this belongs on the front page (0.00 / 0)
so I did not put it there.

I also could not think of a relevant photo to offer.

I will leave all that to others.

Ken, the Best to Your Wife (4.00 / 1)
and to you during this trying period. This reminds us all of our daily fortunes and provides a perspective for our own trials and priorities. As usual, you demonstrate yours through your words and actions.

Thanks for sharing, and best of luck with this situation (4.00 / 1)
moving forward. Fortunately, you have access to excellent medical care, located very close to your home, and with good medical coverage. As we all know, that is not the case for all Americans, as it very much should be, and that's a national disgrace.

Follow me on Twitter. Follow Blue Virginia on Facebook and Twitter.

Good luck and keep up the great attitude (4.00 / 1)
Cancer is a terrible foe -- my family history is frankly riddled with it.  But it's increasingly survivable too -- with some lifestyle adjustments and good health care, as you rightly observed.  

Keep the faith -- you've got this community's support behind you.  

For a Sustainable Virginia. Now on Twitter.

We Could Have Passed in the Hall (4.00 / 1)
Ken, all my best wishes to you and your wife. VHC may be the best place to be in such circumstances.

We overlapped. I was admitted 1/21, had surgery 1/24 to drain a subdural hematoma, released 1/28 and go back Monday to get staples removed.

I am in awe of the care there, especially in ICU.

And yes we are fortunate to be so close to such a resource. (Mine is a 5-minute drive rather than walk, but I can't drive for another 2 weeks.)



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