Thursday, January 24, 2008

it's the 2nd anniversary of my bone marrow transplant

This Sunday is a special day.  It's a second anniversary for me.  On January 27, 2006, I had a bone marrow transplant, which put my bone marrow cancer into remission and prevented me from developing leukemia.  This transplant also made sure that my Non-Hodgkin's Lymphoma, which had been in remission since 1999, would remain in remission indefinitely.  The transplant did what it was supposed to do, but it left me with nearly constant complications for almost a year, and frequent complications for a year after that.
 
But during the last six weeks, my weekly lab tests have shown a big improvement in some major areas of my health.  My immunities have been in the normal range for a month and a half.  This is a great relief after having very low immunities for most of the last year.  The three most important measurements of my red blood cells also have been normal for the first time in three years.  And my kidneys have improved from 30 percent function to 40 percent.  While my doctors are all pleased with these changes, I'm thrilled.  Maybe now I can have a life that's closer to normal.  I'm looking forward to that.
 
My home town nephrologist (kidney doctor) was surprised as well as pleased by the improvement in my kidneys.  He's told me several times that damaged kidneys don't repair themselves.  But that's what my kidneys appear to have done, at least partially.  He isn't sure how this can be.
 
This has happened to me several times.  In the summer of 2006, I had total kidney failure.  The nephrology team at Hershey Medical Center started me on dialysis the next day, but they told my wife Krissy to prepare herself, because they thought I would die.  Obviously, I didn't die; a week later they told Krissy that I would live, but that I would be on dialysis for the rest of my life.  A week after that, my kidneys were working well enough that they took me off of dialysis.
 
When I got home, my local nephrologist told me that my kidneys were functioning at 25 to 30 percent.  When I asked him if my kidneys might improve more, he said that he doubted it very much.  Now, a year and a half later, my kidneys are functioning at 40 percent.  This time when I asked him if my kidneys might continue to improve, he said, "I doubt it -- but never say never."  Apparently he isn't completely ruling out further improvement. 
 
I like surprising doctors when it's in a good way.  I've set a goal for myself:  I want to reach 50 percent kidney function.  Maybe it's not realistic, but I'm determined just the same.  I know that I owe a lot of my success to the prayers and support of you and the readers of my wife's blog, Sometimes I Think.  I believe that the Lord has kept me alive for a purpose that He has in mind.  God willing, I'll achieve my goal.

Saturday, January 19, 2008

raising baby rabbits (conclusion)

          
                     our baby rabbits eating pink clover

Here's the conclusion to the story I began in my last entry.

The rabbits were no longer tiny.  My Mom decided that it was time for them to start eating solid food.  She called the veterinarian again to ask him what to feed them.  He was frankly amazed that the rabbits were still alive under my mother's care.  He recommended pink clover as the best food for the rabbits.  This left us with the problem of finding enough of it to keep the rabbits fed.
 
My Dad drove my Mom and I around the outskirts of town looking for pink clover.  He clearly found the drive to be an annoyance.  I didn't understand why he had never shared our enthusiasm for raising the rabbits.  He had little patience with the babies, and searching for pink clover was obviously pushing his limits.  My Dad wasn't mean to us about it; he just acted like all the fuss was unnecessary.  The rabbits were so much fun to me that I was confused by his attitude.
 
Finally, to my Dad's relief, we found a field where pink clover grew in abundance.  We didn't know how much we would need, so we picked a lot.  Back at home, the rabbits nibbled at the clover at first, but quickly began eating large amounts.  One rabbit would start eating at the flower end of a stalk, and another rabbit would start eating at the opposite end.  The two would meet somewhere in the middle.
 
We discovered that picked clover would only stay fresh for about 24 hours, so we made daily trips across town to get more, much to my Dad's displeasure.  We also learned that even young rabbits are good at leaping.  One day a rabbit jumped out of the box and ran behind the refrigerator.  My Dad had to pull the refrigerator out from the wall to rescue the rabbit.  By the time he had the young one back in the box, my Dad was stewing about the "confounded rabbits."  After that we kept a window screen over the top of the box with books to weigh down the corners.
 
The rabbits grew rapidly after that.  My Mom said that soon it would be time to set them free.  She hoped they would be able to adapt to living on their own.  The rabbits were still wild:  They wouldn't let us pick them up without a struggle, and petting them was out of the question.  There was an exception to this.  One rabbit was tame.  We could pick him up and hold him; he actually seemed to like it.  Looking back on it now, I'm afraid he may have been too dependent on us to survive on his own.  
 
One day my Mom decided it was time to set the rabbits free.  We all got into the car; my job was to sit in the back seat with the rabbits and make sure they didn't get out of the box.  We drove across town to the field of pink clover.  I knew that an exciting time in my life was ending.
 
We walked out into the field where my Dad set the box down and turned it on its side.  Some of the rabbits rocketed instantly from the box and out of sight.  Two others ran a short distance away and stopped, apparently confused by their freedom.  They crouched for a minute, then began exploring their new surroundings.  The tame rabbit remained inside the box, unwilling to leave.  My Dad turned the box over, depositing the rabbit on the ground.  Tears threatened to fill my eyes; I could see that we were betraying the young rabbit.  We had been a foster family to him.  My Mom gave the tame rabbit some words of encouragement, then she and my Dad started walking back towards the car.  After a moment, I followed.  From some distance away, I looked back to see the tame rabbit still sitting there.  I couldn't tell what he was looking at, but I felt certain that he was watching us walk away and was wondering why we were leaving him.  I had a great sense of loss and guilt at abandoning him.  He was my favorite of all the rabbits.  
 
Leaving the rabbits was hard after caring for them for what seemed like a long time.  All of the rabbits had lived, largely due to the care my mother had given them, despite the veterinarian's dismal prediction.  I should have been pleased that our efforts had helped the rabbits grow up to be healthy, strong, and hopefully ready to live on their own.  But instead our house seemed empty without the rabbits, and a sadnesssettled over me that I hadn't experienced in that way before. 
 
That night, lying in bed in the dark, I thought about the rabbits in the darkness of that field.  Was each rabbit lonely and afraid, facing the night alone for the first time in its life?  Or had they gathered together as brothers and sisters to share comfort and companionship against a world much larger than any they had ever known?  I drifted off to sleep in the security of my family and friends.  I hope the rabbits did the same.

Friday, January 18, 2008

raising baby rabbits

 The adventure began when I was six years old.  Well, for me it was an adventure; for my Mom it was a challenge, but I'm afraid that for my Dad it was a chore.
 
At the time we lived in a house on the edge of my elementary school's property.  A large field of tall grass stretched from our backyard to the school itself.  In the middle of the field a mother rabbit had a burrow where she cared for her very young babies.
 
One day the school custodian mowed the field of tall grass.  Of course the tractor passed right over the rabbit burrow, which scared the mother rabbit.  She ran off, leaving the babies unattended.
 
I don't remember how my Mom knew that there was a rabbit burrow far off in the field, nor do I remember how she knew that the tractor had scared away the mother rabbit.  I just know that one day I came home from school and was thrilled to find my mother's bedroom slippers filled with sleeping baby rabbits.  For a six year old boy it was an unexpected delight.
 
My Mom had called a veterinarian about this small crisis.  The vet had told her that the mother rabbit would not return to the burrow after being so badly frightened.  He also told her not to try raising the baby rabbits on her own; he said they would die no matter what she did.  The babies wouldn't suffer.  They would just continue sleeping peacefully until they died.
 
No one who knew my mother would have been surprised when she ignored the vet's advice.  Her love of animals forced her to take some kind of action.  The rabbit-filled slippers on our kitchen floor were evidence of this.
 
My Mom didn't know what to feed the babies.  They were clearly too young for solid food, and since stores didn't sell rabbit formula, she used her imagination.  She put some dry oatmeal into a saucepan of milk and cooked it for a while.  Then she strained off the oatmeal and set the liquid aside.  When the liquid was cool enough, she took the rabbits out of the slippers and fed them a little of the milk-oatmeal liquid with a medicine dropper.  Each baby drank only a very small amount.  After a baby was fed she put it back in her slipper.  The baby would crawl as far as it could into the toe of the slipper and return to sleep.  In a short time, all were fed and sleeping soundly again. 
 
I watched the first feeding with wide-eyed fascination.  The baby rabbits were better than having a puppy in the house.  I wanted to help take care of the rabbits, but my Mom was reluctant; she said the babies had to be handled very gently, and she was afraid I might accidentally hurt them.  She let me hold one for a moment, and promised that as soon as they got older she would let me help with them.
 
The baby rabbits had to be fed frequently, 24 hours a day.  My Mom didn't complain.  She was determined that the babies would live.  The milk-oatmeal liquid must have been adequate food for the rabbits because after a few days they were not only alive, they were growing.  
 
Before long the rabbits were too big to all fit in the slippers, so we put them in a cardboard box with a bath towel in the bottom for warmth and softness.  The babies were spending more time awake now, though they still slept a lot.  Since they were active, I wanted to play with them, but my Mom said no, they were wild animals.  If they became too tame they wouldn't be able to survive on their own in the wild.  I realized then that these rabbits would not be a permanent addition to our family.  We were only caring for them until they were old enough to be set free.  I felt sad about this, and I spent as much time as I could with them, mostly watching them.  Even as an observer, having the rabbits there seemed like an adventure.
 
This story is running too long for one entry.  I'll finish it tomorrow.

Saturday, January 12, 2008

JLand Photo Shoot #124

          

Here's my entry for JLand Photo Shoot #124.  The subject is 'a close up'.  If you want to be part of this, you can find it in my wife's journal Sometimes I Think.   

This is the first time I've participated in a photo shoot.  I've enjoyed the experience.  I've never taken close ups before; it was challenging and fun.     

Here are some shots of my wife's and my Christmas ornaments.

             

             

             

Tuesday, December 25, 2007

Merry Christmas

I wish I could have written more since I started this journal, but I write entries when I am able.  

I want to wish you a Merry Christmas.  I hope you are enjoying your Christmas day. 

I'd like to share one of my favorite Christmas songs with you.  Have a Merry Christmas and a joyful week.

Thursday, December 13, 2007

chemo for my first cancer (conclusion)

About three weeks ago, before Thanksgiving, I began sharing with you the story of the chemo treatment for my first cancer, Non-Hodgkin's Lymphoma.  I've had some unavoidable delays, such as a week in the hospital and depression, but now I'll finish this story.
 
As I concluded in the first part of this story:
 
Sometime during the night after my first chemo treatment I threw up in my sleep and choked on it.  I woke up in a spasm of coughing and gasping, trying to open an airway.  I coughed for quite a while before I was able to breathe normally again.  Sleep was slow in returning.
 
Now to continue:
 
The next day when I went back for chemo I still felt very bad.  I told  Dr. W. that I had choked on vomit the night before; he immediately pulled out his prescription pad and soon handed me a script for nausea medication tablets, Zofran I believe.  He told me to take one before going to bed each night for three nights after receiving my Cytoxan treatments.  He explained that the Cytoxan was the cause of my intense sick feelings, not the Fludara, which was the milder of the two chemos.  The nausea medication should prevent recurrences of throwing up in my sleep, he explained, and the medication worked like he said it would:  I had no more choking incidents like the first night.
 
The Fludara treatments which I received the rest of that week were easily tolerated, as Dr. W. had predicted.  I still felt sick all day Tuesday from Monday's Cytoxan treatment, but Wednesday afternoon I started to feel better.
 
Actually, I was surprised by chemotherapy.  I had heard horror stories about it on television, in books and magazines, and in movies, but it wasn't as bad as I had thought it would be.  It wasn't any fun, to be sure, but as the weeks of treatment went by, I fell into a routine of expecting to feel sick Mondays through Wednesdays, and feeling more or less physically normal the rest of the time.  I was especially surprised that I only had chemo treatments one week out of four.  I had always assumed that cancer patients got chemo every day for months without any breaks.  Chemo was tolerable, and I soon would have been feeling more like my usual self, had it not been for my oncologist's statement that death was unavoidable within five years.
 
I began bringing my Bible to chemo treatments and reading it while the IVs dripped.  As my treatments progressed, I found that my faith in God was growing stronger.  Faith made it less devastating that I would die despite receiving chemo, but I was still human and I didn't want to die.  Though faith helped, I also had to draw on strength from inside myself, which often expressed itself as stubbornness.  While stubbornness is usually seen as a negative trait, my stubbornness was often a positive force that sustained me in difficult times when I had little else to see me through.  Even though chemo wasn't that bad, knowing that I would die at a young age definitely made this a difficult time.
 
As my faith in God and my stubbornness both grew, my love for Krissy and my appreciation of her also grew.  We had only been dating for a few months when I was diagnosed with cancer, but she stayed with me and added her strength to mine when most other women would have written a man off.  She went with me to medical appointments and watched over me to make sure I was in reasonably good health.  I can't imagine another woman being that devoted to me.  I'm so grateful to you, Krissy.
 
One day I was sitting in the lab waiting my turn to have blood drawn for lab work when I overheard part of the lab staff's conversation.  One woman said that she could usually tell which cancer patients would live and which would die based simply on the patients' attitudes.  She said she could tell that I would probably live because of my positive attitude.  I wondered what Dr. W. might think of her insight.
 
My lab results  had shown since I had begun treatment that the chemo drugs were steadily lowering my white blood cell count, which meant I was becoming more vulnerable to infection.  Just before I began my sixth month of chemo, the lab results showed my white blood cell count to be dangerously low.  Dr. W. sent me over to the hospital to get a injection which would artificially raise my white blood cell count.  After the hospital nurse finished giving me the injection, she said my skin felt unusually hot.  She asked me how I was feeling.  Well, I was feeling pretty bad, and I hadn't had any Cytoxan treatments.  The nurse took my temperature:  It was over 103 degrees.  She called Dr. W. and he had me admitted to the hospital immediately.  Over a few hours my temperature rose steadily to well over 104 degrees.  The doctors put me on broad-spectrum antibiotics and started doing tests:  blood tests, blood cultures, X-rays, CAT scans, a spinal tap, a bone marrow biopsy.  All the results came back negative; they couldn't figure out what was wrong with me.  They finally had a bronchoscope put down into my lungs and discovered that I had pneumonia.  The doctors got the infection under control and after a week in the hospital I was ready to be discharged. 
 
Dr. W. told me that I had had them worried for a while.  Strangely, the thought that I might be close to death had never occurred to me.  Instead I had single-mindedly lived from one moment to the next without thinking of the future.  I don't know if this had been God protecting me from emotional trauma or my own stubborn fixation on life.  Dr. W. sent me home.
 
A week later I was back in the Emergency Room.  I had a pain in my chest that ran down my arm, and an unusual itching rash that followed the pain from my chest to my hand.  The ER doctor diagnosed it as shingles.  I was admitted to the hospital again.  Dr. W. put me on an antiviral medication, saying the chemo had reactivated the chicken pox virus which had been dormant in my nerve roots since I had had chicken pox when I was five years old.  Shingles, or Herpes Zoster, is caused by a recurrence of the chicken pox virus years after the original infection occurred.  After a week or so in the hospital, I had recovered enough to be released.  Before long the infection was gone.
 
After a month's delay, I finished my sixth and final week of chemo.  This last week progressed the same way as the other weeks had:  sick Monday night through Wednesday, then back to feeling normal.  I was glad chemo was over, but according to Dr. W. it had just bought me more time, perhaps a year to eighteen months, then I would need chemo again.  He said each series of chemo treatments would be less effective than the last series, until they no longer helped much at all.  He still told me I might have as much as five years left to me.  He also told me that my hair would fall out from the chemo, but it didn't.
 
Well, seven years went by and the Non-Hodgkin's Lymphoma never came out of remission.  I didn't have to have any more chemo treatments to keep it that way, either.  In 2005 I was diagnosed with bone marrow cancer for which I had a bone marrow transplant at Hershey Medical Center in January, 2006.  This put the bone marrow cancer in remission and worked equally well on my Non-Hodgkin's Lymphoma.  My oncologist at Hershey said there's a 10% chance that one of the cancers might come out of remission at some point during my life.  I like those odds.
 
I'm sure that I have survived through so much for so long because it is God's will that I live.  But I also know how stubbornly I have refused to give up through all this.  I had trouble reconciling these two forces until Krissy told me that she believes my stubbornness is actually an inner strength that God has given me to help make these trials more bearable and survivable for me.  We both believe that God has a plan for my life.  We just haven't figured out what that plan is yet.  When the time is right we'll understand.  In the meantime I'll just keep surviving obstacles. 

Wednesday, December 5, 2007

from my hospital room to depression at home

 
You may know by now that I spent a week in the hospital with a bacterial blood infection.  My immunities had been dangerously low for at least five weeks and I finally got sick.  I started feeling bad on Thanksgiving Day and the Saturday following Thanksgiving I woke up with a fever of 104.5 degrees.  I went to the local emergency room almost immediately; they admitted me and figured out what was wrong with me quite quickly.  They put me on three IV antibiotics and around the clock fluids. 
 
I don't remember much of my first two days in the hospital, except that I had a very high fever, was freezing with chills, was badly dehydrated, drank huge amounts of water, and generally felt miserable.  On the third day I felt a bit better.  I asked the nurse if my condition had been life threatening.  All she would tell me is that any blood infection is potentially life threatening.  They told Krissy privately that my condition had been serious.  They almost never tell the patient anything that might be upsetting.  
 
They kept me in the hospital for almost a week, then my doctor sent me home with a prescription for a strong antibiotic.  I'm doing much better now except for a bleak depression that I can't get rid of. 
 
This depression surprises me because I rarely get depressed.  I think my depression was triggered by a fairly close brush with death.  I think as my recent illness moves farther into the past the depression will fade. 
 
It's very hard for me to write when I'm depressed, so this is the first thing I've written in the week that I've been home.  I'll try to write the conclusion to the journal entry I started just before Thanksgiving, and finish it soon, but it will probably be slow going. 
 
Krissy has written about my recent illness in her journal, Sometimes I Think.  Thank you for your comments, emails, prayers, and concern for both of us.  You have helped both of us a lot. 
 
I'll try to finish that journal entry I started two weeks ago.  Thank you for your support.
 
John