The Incredible Shrinking Brain Tumor

Last May I wrote these words, “My sister is dying”.  It was going to be a blog entry, but I put it away; I  didn’t want to write it.  She had just told me she had about a year — give or take a couple of months on either side.  Then she told me that she felt better and more relaxed than she had in months.

There had been several months of wondering what was wrong.  Why was she so tired?  Why was she stumbling?  Did she have a stroke?  Nope; apparently not.   A week in the hospital.  An MRI six weeks prior that showed a shadow.  But… too soon to tell, so a second MRI was scheduled for a month hence.  Then the shadow was larger… much larger. 

It appeared to be a brain tumor…  resting right up against the brain stem… on the inside.  So if you took a string and ran it in one ear and out the other, tumor would be right in the middle of that string.  A biopsy is sort of a last resort — because, as the Dr. advised, the biopsy needle would have to go through several layers of brain to get to it.  And the risk of damage is pretty high.

She was listing to the right, stumbling frequently, and using a cane, its purpose to keep her moving in a straight line.  She was tired, so tired.  The doc prescribed a specific type of steroid designed to target inflammation in the brain.  After a few sleepless nights, it started to help!  At least the symptoms were abating.

One week later, she met with an Oncologist who talked about Radiation and Chemotherapy.

After this meeting, she took a drive down to Ann Arbor for a second opinion at the University of Michigan.  That doctor said, "yes, it looks like a Glioma." [FYI:  Google and The American Brain Tumor Association® says:  “Glioma” is a general term used to describe any tumor that arises from the supportive (“gluey”) tissue of the brain. This tissue, called “glia,” helps to keep the neurons in place and functioning well.]  BUT — (sometimes “BUT” is a good word…) it also could be Lymphoma, which would be better, more treatable.

Long story short:  Glioma: bad.  Lymphoma: good. 

There is a bit of cognitive dissonance in looking at a diagnosis of Lymphoma as good news.  Everything is relative.  There was also cognitive dissonance in listening to my sister cheerfully tell me that, after a little spell of “weepiness” she’s feeling better than she has in a long time.

There followed batteries of tests designed to positively diagnose Lymphoma.  No need to go into details, some were not particularly fun, but for the most part she was able to take medically induced naps throughout.

She took a Medical Leave from work and started on her new project…  preparing for cancer treatment.  Wig - Check!   Caretakers - Check!  Local source for anti nausea medication - Check!

Last Will & Testament - Check!  Medical & Durable Powers of Attorney - Check!

My sister knows how to get things done.  She knows how to delegate, how to lead.  That last thing on the list above, the health directive…  I would like to say that any of us over 50 should have on hand… really no matter what our age, should probably do.  Remember poor Terri Schiavo http://en.wikipedia.org/wiki/Terri_Schiavo_case.  Sorry to digress, but it’s important.

Meanwhile, in my sister’s world, the months went by.  A second MRI was done.  The Radiologist recommended another six-week wait to do a third MRI.  Huh?  Apparently the Steroid had done its job so well that the tumor had still not grown back to its original size.  It was too small to do the biopsy.

More weeks of waiting.  My sister was getting a little antsy; a little bored.  The symptoms were not really returning to the extent they had been, and she was getting a little frustrated having to be driven around.  I was visiting her for a two-week stint during which I expected to do some care taking.  I was a cook, a driver.  But, other than being a little tired, she was really feeling okay.  Not listing to one side, not bumping into things.  She fell a couple of times and had a little trouble getting up. But mostly it was waiting.  Who looks forward to chemotherapy?  But really, the sooner it starts the sooner its over, right? 

Then finally, the third MRI.  It was on a Friday in mid-July.  Monday she met with the Radiologist.  She was, we were, those of us who love her, nervous for the “reading”.  I was at work, with my phone on to receive the text of the results.  I was about to make airline reservations for another visit, this time to do some actual care taking, as the chemo would surely be in full swing by that time.  The text arrives.  “You Do Not Need to Visit…. do not make those reservations.”  What?  Huh? 

I called back without listening to the voice-mail.  She said, calmly, “….  the tumor seems to have disappeared…. completely.”

She is driving again.  The hated cane is in its resting place, resting.  She is going back to work, starting Monday.

Life is full of mysteries.  There is currently no answer to what happened in my sister’s brain.  I can tell you for sure that I am grateful for this mystery.  I have forgiven this tumor for its existence, and I am grateful for its disappearance.

Childbirth Story - 1976

In early December 1975, it became clear I was pregnant. I was 23, and in a new relationship.  I wasn't sure if the relationship was going anywhere but when I told him I was pregnant, had I been completely objective at the time, it would have been clear even to me that the relationship was going nowhere.  He was not ready.  He had plans.  He was moving north to Monterey to attend Chiropractic College; a goal he had been working towards and which was finally going to come to fruition.   

He was going.  

He was gone. 

I only saw him a couple of times after that.

I knew all the options: adoption; abortion; motherhood.   I took a few moments and mentally reviewed all the things I had done in my life vs. all the things I hadn't done but wished I could.  I decided I could live with out ever hopping a freight train and opted for motherhood.

From the very beginning of the pregnancy I was a single mother.  But I wasn't alone; I had support.    I had a close circle of friends who were like-minded; my family was amazingly supportive.  One of my sisters, who lived 2000 miles away and had a family of her own, insisted I call her as soon as I went into labor so she could fly out to stay with me for a few days after the baby was born.

My first prenatal visit was at UCLA where a young resident examined me.  He groped around my nether parts for a while with a very solemn expression on his face, but was obviously not familiar with what he was feeling.   He called in his teacher in.  He gloved up, poked around and immediately said, “Wow!  You have a HUGE pelvis!"   I knew I would have no problems giving birth. 

Many of my friends were young mothers.  Most of them had given birth "naturally" using either the Lamaze or Bradley childbirth "method", and some had given birth at home.   After some research I decided Dr. Bradley’s method of Husband Coached Childbirth made more sense to me, and found a teacher and a coach.  At my first class, the teacher talked about the importance of having an advocate in the hospital.   She indicated that hospital workers might assume you want pain medication, and continually offer it to you.  She explained that during labor, most of the oxygen that normally occupies your brain is focused on your uterus, so it's difficult to explain what you want... or don't want.  She coached the husbands on how to be strong advocates for their wives while dealing with hospital staff.  

I didn't have a husband.   I had a good friend and coach, but I didn't have a husband to speak for me.   

I was referred to Nial B. Ettinghausen, D.P. (http://www.gentlebirth.org/format/ettinghausen.html )

Dr. Ettinghausen was licensed as a Drugless Practitioner (specializing in childbirth at home) in 1939, and as a Chiropractor in 1942.  I read Childbrith Without Fear, by Grantley Dick-Read, wherein drugs are not part of the deal, where lying flat on your back in a brightly lit operating theater is not the norm.  I was already alone as a single mother-to-be, I wanted to give birth where I felt safe, protected, and loved.  

I immediately trusted Dr. Ettinghausen, a gentle man, about the same age as my father. He had a small office near the South Gate area of Los Angeles.   He confirmed that I seemed to have the right bone structure for an easy birth.  I lived in Redondo Beach, a long drive from his office.  Dr. E. had a group if nurse-midwives on his staff that worked in pre-arranged sectors of the Los Angeles area.  One would be assigned to me and would stay with me from start to finish.  

My child was due to be born the first part of July.  I was growing pretty large, pretty fast.  At most of my visits, Dr. E. would listen for a second heart beat while I held my breath.   In June, he became concerned that we had miscalculated my due date.   Did I remember my dates correctly?  I did.  In fact, I had become pregnant no earlier than October; I knew because it had been the first time with my young man.  Nonetheless Dr. E. wanted to be sure there weren't two fetuses in there, and recommended I have an X-Ray.  Seriously?  He assured me in his gentle way that it would be safer to have one X-ray than not to.

The x-ray confirmed one beautiful child, facing the right direction, head perfectly positioned.   One tiny little spine nestled safely in the shelter of my larger one.   

When calculating the due date using the date of the last period and counting back two weeks, my due date was July 8th.  My mother, who had five daughters, advised me, "add two weeks to whatever they tell you".  

My roommate went out of town the weekend of July 17th.  If I went into labor I was to immediately call her boyfriend and he would come over.  On Saturday, July 17th I cleaned out all the cupboards and painted my toe-nails.   I woke up around 1am on the 18th with a backache.  It took me awhile to figure it out.   I called the boyfriend.  He was probably terrified, but he came over and stayed there while I drifted in and out of sleep.    

Sunday morning came and I called my friend Terri, who was my birth coach, and Dr. E's answering service. I also called my sister, who then made plane reservations to come and see me from her home in Chicago.  The nurse-midwife, a woman named Dorothy, whose last name I never recorded, came along with a young woman, Dr. Cheryl Harder, who was studying under Dr. E. all that summer.  They set up shop with a table (Dr. E's knees could no longer handle bed births), a scale to weigh the baby and, what else I couldn't tell you; I was busy.   Dr. Harder made herbal tea.   Dr. E popped in and out during the long day.  Terri, my coach helped me to relax, relax, relaaaaaax my toes, my fingers my eyebrows.  She leaned on my back while I was on my knees, head on the sofa to relieve the back labor.  She walked with me around my block, it seemed, about 20 times that afternoon. She held my knees back while I pushed.    

At around 6:30pm, Dr. E. visited dressed in suit and tie, on his way to give a lecture on home birth.  If I still hadn't had the baby when he came back he would break my water to move things along.   

Seth was born at 7:47pm, Sunday, July 18, 1976, after 18 hours of labor, including 45 minutes of pushing; with the last three pushes to loose his broad shoulders.  He entered our world as the red rays of sunset shone through the window in my living room.

He weighed 11 lbs., 2 oz., and was 22 inches long.   When Dr. E. came to my apartment at around 10pm, he turned on the light and the baby cried.  He picked up Seth, stroked his head, and the baby quieted right down.

The next morning my sister arrived, my roommate got back from her trip  and I had a nice breakfast of cantaloupe and strawberries while I nursed my big happy sweet baby boy.

That boy is 6' 4" of manhood now, still with broad shoulders, and with five beautiful children of his own.