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.

Tuesday, November 20, 2007

chemo for my first cancer

My last journal entries dealt with medical tests which examined my first cancer, Non-Hodgkin's Lymphoma.  Now I'd like to share briefly with you the treatment of my first cancer, which in actual time lasted seven months.
Krissy and I were still in the very comfortable room with Dr. W.  He said I could start chemo in a few weeks when they had an opening in their chemotherapy infusion room.  In the meantime, he told me I could check into something potentially promising.  Hershey Medical Center was participating in an experimental study which would compare a new treatment for NHL with a treatment in common use.  He said that naturally I was free to choose the study over his treatment if I wanted to.  Krissy and I discussed it and we decided it would be good to consider all my options.
Krissy's father drove Krissy and me to Hershey to meet with an oncologist who was involved in the study.  He had read all my test results, which Dr. W. had sent him.  The oncologist asked me many questions; the answers I gave combined with my test results would determine if I would be a suitable subject for the study.  When the oncologist was finished with his questions, he began telling me the details of the study.  There would be two groups of subjects in the study.  One group would be given the new treatment, a combination of the chemo drugs Cytoxan and Fludara.  The other group would be given a commonly used treatment, a cocktail of other chemo drugs.  Subjects would be randomly placed into one group or the other.  The subjects would be closely monitored during and after treatment to evaluate their progress.  The results of the study would help oncologists understand more about NHL and the best ways to treat it.  The oncologist told me that I could think over my decision for a while and get back to him. 
Krissy and I discussed the experimental study.  I would have liked to try the promising new treatment, but if I took part in the study I might have been placed in the group receiving the current chemo treatment instead.  I was unsure about what to do.
Krissy and I talked to Dr. W. again, and I expressed my uncertainty about the study.  Fortunately, he told me that the newCytoxan-Fludara treatment was available in his infusion room right in my hometown.  It was not necessary for me to take part in the study after all, but I would be able to get the promising new treatment.  This was what I had been looking for.  I accepted his offer.     
Dr. W.'s nurse explained to us how chemo would work.  I would receive chemo treatments one week per month for six months.  On Mondays I would be given Cytoxan and Fludara; Tuesdays through Fridays I would be given Fludara alone.  Chemo would be given by an IV bag for an hour or more a day.  A nausea medication would be added to the IV bag, which she said would be enough to keep me from becoming nauseated for 24 hours.  She told us that my hair would fall out as a result of the chemo, and that they would closely monitor my progress with regular blood tests.  I filled out the necessary paperwork and waited for the opening in the infusion room.
My first day of chemo arrived.  A nurse led Krissy and me into the infusion room which held seven or eight recliners with electronic IV pumps standing next to them.  I sat down in the one empty chair; Krissy sat beside me.  At age 36, I was by far the youngest patient in the room.  A nurse inserted an IV into my hand and started running a bag of saline.  She also gave me some Tylenol and Benadryl tablets, which they always gave me before chemotherapy and blood transfusions.  The nurse brought a bag of Fludara and connected its line to the saline line.  The Fludara ran for an hour.  I felt no particular sensation except for the same anxiety about chemo that I had felt all day, and some drowsiness from the Benadryl. 
When the Fludara was done dripping, the nurse connected a bag of Cytoxan and let it run for about two hours, if I remember correctly.  I felt little or no sensation from the Cytoxan, either.  When the Cytoxan was done, the nurses sent me home, and Krissy came along to make sure I would be all right. 
About two hours after the nurse disconnected me from the IV, I started feeling strange.  I wasn't sure at first exactly how I felt, except that I knew the feeling was wrong.  I gradually began feeling sick:  feverish, with body aches and a severe headache, nausea with a dehydrated sensation, restless, and generally awful.  It felt like the worst flu I had ever had, but it also felt more than flu-like.  I don't know how to describe it, except that I felt terrible.  I spent the evening lying down and eating nothing.  It had been like this for hours by then, and the sick feeling showed no signs of fading.  I fell into a fitful sleep.
Sometime during the night 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. 
Again, this story is becoming too long to comfortably fit into one journal entry.  I'll finish it tomorrow.

Tuesday, November 13, 2007

medical tests of my first cancer (conclusion)

The story I was sharing with you in my last entry was running too long to comfortably fit into one entry, so I'll finish it here.

Dr. W. saved the bad test for last.  He always did the bone marrow biopsies himself.  The purpose of the biopsy is to get a sample of the soft center of the bone where your body makes your blood cells.  At least in my case, the biopsies are done on my pelvis, by going in through my lower back.  Dr. W. had me lie in a position halfway between lying on my side and lying on my stomach.

The biopsy began with a number of shallow and deep local anesthetic injections into an area of my lower back to help numb the tissue.  The injections were quite painful in that area, bad enough to make me grit my teeth and hold my breath.  Then Dr. W. penetrated to just above the bone with what felt like an ice pick, or the medical equivalent.  I've never seen a doctor actually doing the biopsy on me since he is standing behind me in a place which is blocked from my view by my own body. 

Don't think that I didn't feel anything of this penetration because of the anesthetic.  I felt plenty of pain and pressure.  Then Dr. W. injected the hard part of the bone with a local anesthetic.  This shot caused pain so intense that I nearly hit the ceiling, while I made a sharp groan of pain.  Dr. W. then took a mallet and a sharp object of some kind and began to chisle through the hard outside of the bone.  I could hear and feel the "chip, chip, chip" of the instrument forcing its way through the bone.  I was making quite a bit of involuntary noise throughout this.  Dr. W. had made Krissy wait outside the room during this procedure, and I was glad that he did.  I would have hated for her to hear me gasping and groaning in pain like that.

Finally he got all the way through the hard part of the bone.  Dr. W. told me that there was no way to numb the very sensitive marrow, and warned me that taking the marrow sample would hurt a lot, as if up to that point the biopsy had only tickled.  I braced myself and was certain that this time I would be strong and take it quietly.  But when he took the sample, I actually shouted with agony.  That finished the biopsy for the moment.  He cleaned up the area and put a dressing on the site.  He then explained that he had to do another bone marrow biopsy on the other side of my back, and that it would be best to get it over with quickly.  I won't bother describing the second procedure. 

The biopsy sites hurt for a week.  All totaled, I think I've had 11 bone marrow biopsies done on me.  

At last the time came to hear the results of the tests.  A nurse led Krissy and me into a very nice room which had a sofa and comfortable chairs; the room was reassuringly decorated and utterly relaxing.  Dr. W. came in and started explaining the facts.

I had Non-Hodgkin's Lymphoma, a slow-growing cancer of the lymphatic system.  The cancer was at stage 3B, which meant that it was in an advanced stage and was located in two distinct parts of my body.  They couldn't cure it, but with chemotherapy they could give me more time, maybe five years or so.  He went on to explain how NHL would progress and gave me other details, but I don't remember much about that now.  I do remember that he never used the word "terminal."  I'm glad he didn't; the word has an ugly sound.

Dr. W. said that the sooner I started chemo the better it would be for me.  He seemed to be waiting for a response from me, but I sat there feeling like someone had hit me.  The man had just told me that I was going to die.  That's why they had such a comfortable room:  to tell patients the bad news.

Eventually I agreed that starting chemo would be a good idea, though privately I wondered what I was getting myself into.


Some helpful notes about bone marrow biopsies --

If you ever must have a bone marrow biopsy, ask for an injection of morphine and 1 mg of ativan.  Put the ativan tablet under your tongue so that the medication goes quickly to your brain, where you want it to go.  The morphine will help a lot with the pain, of course, and the ativan will relax you so that you don't tense up during the biopsy.  Being tense will only make the pain worse than it has to be.   

Some of my oncologists have allowed me morphine and ativan, while others have refused.  At the very least, try to get the ativan.  That alone will help quite a bit.  But if you do get either of these drugs, be sure to have someone to drive you home from the biopsy.  Both drugs will impair your driving ability. 

I sincerely hope you never need to use this information.

Sunday, November 11, 2007

medical tests of my first cancer

My last journal entry ended with the discovery that I had a malignant lymph node.  Now I'd like to share with you the testing which determined the extent of my first cancer's growth.

I wish I could say that when I learned I had cancer I instantly vowed to fight the disease with all my strength and will.  But it didn't happen that way.  Instead I started sleeping almost around the clock; I probably wanted to escape from life for a while.  Krissy would call me several times a day to see how I was, and to urge me to see an oncologist about the cancer, but I kept on sleeping.  Finally Krissy and a friend of mine made an oncology appointment for me, got me out of bed, and pretty much dragged me to see the doctor.

Dr. W. gave me a thorough examination which was painless.  He had studied the pathology report on my malignant lymph node, so he knew what he was looking for.  He told me that I had a lymphoma, and explained in general terms what that meant, but without committing himself to a detailed explanation.  I suppose he wanted more information first.  He then scheduled me for five things:  blood tests, a biopsy of the lump on my neck, a CAT scan, a bone marrow biopsy, and another appointment with him to hear the results of all the tests. 

The blood work was a piece of cake.  I had had blood tests before and wasn't at all concerned about being stuck in the arm.  The needle barely hurt, and after drawing blood for two minutes or less, I was done.

Before doing the biopsy of the lump on my neck, the pathologist asked me two questions; he was hoping to find out why I had developed a lymphoma.  He asked me if I had ever been a coal miner, or if I had ever worked in a uranium plant.  My answer to both his questions was "No."  He explained that he had asked because links had been found between lymphoma and a prolonged exposure to carbon, and exposure to radiation.  Aside from those two, no one knew what caused lymphoma, at least at that time.

I was a bit apprehensive about the neck biopsy itself.  I had the impression that the pathologist would cut out the whole lymph node which caused the lump, but my fears were unnecessary.  He pushed a rather thick needle into the lump to extract a sample.  The pain was worse than a flu or tetanus shot and lasted considerably longer, but I was relieved to find it bearable.  I'd actually been worried about that biopsy.  After all I've been through with two cancers, it's embarrassing to look back on myself in 1998 and realize what a novice I had been.

The preparation for the CAT scans of my abdomen, pelvis, underarms, and neck started with no food or liquid after 12:00 AM the night before.  My scan was at 8:30 AM, but before the scan I had to drink two quarts of barium in a short time.  I could have easily believed that I was drinking Sherwin-Williams house paint.  The radiology technician told me that drinking it cold with strawberry-banana flavoring made it taste better.  "Better" must have been a relative term.  Drinking large quantities of cold paint for breakfast on an empty stomach put me in immediate danger of throwing up and possibly ruining the CAT scan.  Somehow I kept it all down, but just barely.  The scan itself was an anticlimax, except for the dye they injected into my veins.  This caused me to have an intense sensation of heat everywhere, as if my body temperature had jumped to 120 degrees.  But now that I think of it, most of you have probably had CAT scans already, so I don't need to go into too much detail.

Dr. W. saved the bad test for last.

This story is getting too long for one journal entry, so I'll continue it tomorrow.

Saturday, November 3, 2007

discovering my first cancer

The discovery of my first cancer, Non-Hodgkin's Lymphoma, was made when I had a hernia.  This may seem like an odd or even funny way to learn that you have cancer, but it's exactly how I got the bad news.  Let me explain.

The year was 1998.  I went to see a doctor for some reason, probably for bronchitis.  I had a recurring problem with bronchitis all through the '90s.  While I was there, I asked the doctor about a lump that I had found on the back of my neck.  Dr. S. examined the lump briefly, then said, "It's probably nothing to worry about.  Just keep an eye on it and see if it gets any bigger."  Clearly, Dr. S. was not an oncologist.  With that, he ushered me out of the exam room and sent me on my way.  After this false start, I'm lucky the truth was discovered before it was too late.

A short time later I noticed a somewhat larger lump in my lower abdomen.  I don't remember how I ended up seeing a urologist about it, but just the same I found myself in an exam room with Dr. D.  He told me that the lump was a hernia, and he scheduled me for an ultrasound to see how serious it was.

I'll probably never know for certain how I got the hernia.  Maybe it happened while I was helping some men from our church move a baby grand piano up two flights of stairs.  Maybe it happened while I was helping a friend load boulders into the bed of a pickup truck so they could be hauled away.  By whatever means I got it, the hernia caused me no pain or discomfort, so it could have been new, or it could have been biding its time.

I had gotten into the habit of examining the hernia site several times a day.  At the time I suspected that I would gain nothing by examining it, but I checked it anyway.  Then one day I noticed a smaller lump not far from the hernia.  The smaller lump puzzled me.  A few days later I saw Dr. D., the urologist, again.  The ultrasound had revealed that the hernia was serious enough to need surgical correction.  I asked Dr. D. about the new small lump.  After examining it intently for a while, he said, "I don't know what this is, but it needs to be biopsied."  I didn't realize it at the time, but Dr. D. had come through where Dr. S. had dropped the ball.

Soon the day of my hernia surgery arrived.  I don't know why surgical suites have to be so cold that you can almost see your breath.  This is especially uncomfortable when you're wearing only a flimsy hospital gown and have a stomach which is 12 hours empty.  That morning Krissy, who was then my girlfriend, sat beside the rolling bed that I was lying on.  She was doing everything she could to make me more comfortable and less anxious.  A nurse gave me something to make me loopy before they gave me the anesthetic, and the last thing I remember before losing consciousness was being wheeled into the operating room.

When I woke, Krissy again was sitting beside me, saying comforting words.  She made the entire experience a lot less stressful for me.  The surgeon came in, said that everything had gone smoothly, that the hernia was repaired, and that I could leave soon.  I asked him about the small lump.  He said it was an enlarged lymph node which he had removed and sent to Pathology to be studied.  His office would call me at home when they had the results.

I was at home asleep a few mornings later when the surgeon himself called with the Pathology results.  He told me that the enlarged lymph node was malignant.  I blearily thanked him for the information and went back to sleep.  An hour or two later I woke up and wasn't sure if the surgeon had called, or if I had dreamed it.  I phoned his office; he told me that he had called and that the lymph node was indeed malignant.  I had a strange feeling that the news wasn't real.  I also had the sick feeling that the news was very real, and that left me numb.

I knew what malignancy meant, even though I didn't know the specific medical name of the illness I had.  I also didn't know yet that very soon I would need all my faith in God, all of Krissy's support, and all of my own stubbornness to wage a battle of wills with a terrible enemy:  cancer.  But that is another story.   

Sunday, October 28, 2007

a brief history of Martha

                                Martha and her clippings 

When I was about 14, my family was involved in a rather serious car collision.  My parents, my 80-year-old grandmother, a family friend, and I were heading home from a Christian concert at a church which was an hour and a half away from our town.  Our friend was driving us in her car.  We were almost home.  An out-of-state driver, unfamiliar with the area, ran a stop sign and we hit him broadside at 45 miles per hour.  It was late at night and none of us were wearing seatbelts.  My parents were in the front seat with our friend, my grandmother and I were in the back.  I was asleep at the time it happened.
Our friend was left unconscious with a concussion, my Mom had broken ribs, my grandmother's leg was broken, and my Dad's face shattered the passenger side of the windshield.  Except for a bloody nose, my Dad was amazingly uninjured.  I wasn't hurt at all, maybe because I had been asleep and was relaxed.  The car was a total loss.
My parents were treated and released at a local hospital; our friend recovered and was discharged after a few days.  But my grandmother was hospitalized for weeks with her leg in traction.  During this time she accumulated a number of potted plants sent by concerned family members.  I had the job of watering them when they were dry.  We visited her for several hours every night.  Our visits continued when she was transferred to a nursing home for a few months, where her leg slowly healed.
Eventually she came home again to live with us.  She gave all her plants to me; I kept them on a stand in my room.  The only one that survived any length of time was a small philodendron in a white glass ornamental container.  For reasons now forgotten, I named the plant Martha.
After my parents divorced when I was 17, my Mom and I found our way to Ohio, which became our new home.  Martha traveled with us.  I moved back to Pennsylvania after about a year in Ohio, but Martha stayed behind.  My Mom seemed amused by a plant that I had actually named, so she took good care of Martha over the years.  During 1999, my Mom and my stepfather drove east to visit me.  They brought clippings from Martha which I put in water for several weeks until they sprouted a good root system.  I then planted them in a medium-size pot of soil and hung Martha by a window.
Martha has hardly shown energetic growth.  My plant-withering thumb probably has a lot to do with that.  But during 2007 Krissy and I saw a little improvement in Martha:  some branching of her two single-strand vines which made Martha a bit more full in appearance.  Before we moved to our new apartment, we clipped Martha into sections and placed the clippings in water to again produce a root system.  Martha's clippings are now growing roots and soon we'll plant her in a soil-filled pot. 
Meanwhile my Mom moved to Florida, taking her part of Martha with her, and recently I found out that one of Krissy's friends wants to take part of Martha to Oregon.  This small 30-year-old philodendron may soon be growing around the country.  Who knows how far she may ultimately spread.
My grandmother passed away 25 years ago.  Maybe I'm just sentimental, but I see Martha as a small part of my grandmother's legacy.  I hope Grandmom is pleased with Martha's continuing life.   

Tuesday, October 23, 2007

photos about my 100 things

I hope you found my "100 things about me" interesting.  I thought I'd show you some photos that illustrate a few of the items in the "100 things" list.  You'll even get to see my 10 lb. pet Australian rabbit

                  Me at age two in my Dad's Salvation Army hat 


                                Age five, with my Mother   



      The wild rabbits my Mom and I raised in her bedroom slippers


                        Bun-Bun, my 10 lb. pet Australian rabbit



                  Meisha, my companion for 16 years


                            Right after my baptism, 2002

             Krissy and I at our wedding, May 2005

                                            Our Maine Coon Cat Michael


Getting chemo before my bone marrow transplant

              Bone Marrow Transplant Day


                                                  Dialysis Catheter

Monday, October 22, 2007

100 things about me (51 - 100)

Here is the conclusion of 100 things about me . . . 

  51.   I'm sad to admit that I've only been to two Star Trek
  52.  Oddly enough, some people are surprised to learn that I like
         pickled eggs.
  53.  When I was in fourth grade, my Dad told me I was missing the
         point when I felt sorry for Charlie Brown instead of laughing
         at him.
  54.  One good thing came out of a year of bone marrow transplant
         complications:  I went from 275 pounds to 175 pounds.  But as
         a weight loss plan, I wouldn't recommend it.
  55.  Our new apartment has been without television cable service
         since we moved in three weeks ago.  So far I haven't missed it.
  56.  I was named after the Protestant reformer and no-nonsense
         Scotsman John Knox.  I'm sure my parents grieved when I
         converted to Catholicism.
  57.  My ancestors were Highland Scots who were mostly horse
         thieves.  They fled to Nova Scotia to escape execution.  A
         proud family heritage . . .
  58.  I've never worn a kilt or played the bagpipes, but I do enjoy a
         round of golf now and then.
  59.  I've had more than 60 days of chemotherapy treatments. 
  60.  Krissy and I have already named our first two children, but
         after all that chemo we're not likely to have kids.
  61.  After my transplant, I developed a red-blood-cell-destroying
         disorder called hemolytic anemia.  I must have had 100 blood
         transfusions, needing as many as seven bags of blood a day.
  62.  I haven't needed a transfusion since February, thank God.
  63.  One of my post-transplant medications damaged my kidneys,
         causing total kidney failure in the summer of 2006.  I had to
         be on dialysis for two weeks.
  64.  My kidneys recovered to 25 or 30 percent normal function, 
         enough to keep me off dialysis.
  65.  I'll probably have to go back on permanent dialysis eventually.
  66.  The Green Bay Packers are my favorite football team.
  67.  Krissy's mother thinks I look like James Taylor.
  68.  My Mom claims that I'm responsible for her hair turning grey.
  69.  From third grade to eighth grade I played trumpet in our
         school's band.
  70.  To my surprise, I survived the Disco Era without needing
  71.  When I was 15 I had a crush on Princess Leia from Star Wars.
  72.  I have a 30 year old potted philodendron named Martha.
  73.  My immunities regularly drop to a dangerously low level,
         forcing me to wear a surgical mask everywhere I go.  When I
         walk into a convenience store, the people there often think I'm
         going to rob the store, and watch me with slack-jawed dread.
  74.  Krissy jokes that I should wear a shirt which reads, "Don't
         shoot!  I had a transplant."
  75.  When I was eight years old, I was throwing stones in our front
         yard while my Dad was mowing the lawn.  He came around the
         side of the house and a stone caught him in the head.  He hit the 
         ground like a bag of bricks.  I think he would have killed me if
         he had been able to get up.
  76.  A black cat named Meisha was my close companion for 16
         years.  After occasionally boarding her at the animal hospital,
         she would ignore me for days.
  77.  When I was a teenager, I liked to catch snakes.  Sometimes I
         was bitten, but not very often.
  78.  My Dad introduced me to classical music when I was ten.  I
         loved it.  He told me that I might enjoy what I had heard so
         far, but if I heard more I wouldn't like it.  My Dad was wrong.
  79.  When I was young my parents liked to take me to the zoo.  My
         favorite exhibit was the reptile house.  My Dad would say,
         "You're weird, John."
  80.  I give our diabetic cat Michael two insulin shots a day, just like  
         I do for my wife.
  81.  I don't like candy or sweets very much.
  82.  However, I do enjoy bread pudding with vanilla sauce.  Krissy
         says bread pudding tastes like wet bread.  She doesn't know
         what she's missing.
  83.  My favorite restaurants are Red Lobster and Outback
  84.  Once when Krissy and I were in a restaurant, a waitress
         dumped a tray of food on me.  It didn't do my leather jacket
         any good.
  85.  In my twenties I volunteered in a nursing home, spending time
         with an elderly man.  All he wanted me to do was watch
         television with him.
  86.  Once I tried to bake brownies.  I left them in the oven so long
         that they baked to the consistency of hockey pucks.
  87.  I like octopus, squid, and frog's legs, if they are cooked
  88.  I saw the original Star Wars  movie 13 times during the first
         year it was released.     
  89.  When I was 13 I got a chemistry set for Christmas.  I
         learned some valuable principles of combustion by charring a
         large section of my bedroom carpet.
  90.  Health permitting, I attend monthly meetings of a local
         astronomy club.
  91.  We moved 16 times before I was 21.
  92.  I still watch the television specials A Charlie Brown Christmas
         and How the Grinch Stole Christmas every year. 
  93.  I enjoy listening to my Box Set of J. S. Bach's Complete Organ
, a gift from Sassydee50 (Deb).  
  94.  My favorite holiday is Christmas.  My next favorite is Easter.
  95.  Some of my favorite movies are Pride and Prejudice, A
         Beautiful Mind
, and Jane Eyre (the Masterpiece Theater
96.  The book I'm currently reading is Sense and Sensibility  by
         Jane Austen. 
  97.  I wear long sleeves, long pants, and a wide-brimmed Australian
         hat to keep the sun off my skin.  People who have had bone
         marrow transplants are at high risk for skin cancer.
  98.  I love Krissy dearly.
  99.  I find that writing an online journal is addictive.
 100.  In the priorities of my life, Jesus comes first.

Sunday, October 21, 2007

100 things about me (1 - 50)

I realized that I haven't properly introduced myself to you yet, so here are 100 things about me.

   1.  I am 45 years old.

2.  I have survived two cancers:  Non-Hodgkin's Lymphoma and  
   3.  I had a bone marrow transplant in January 2006.
   4.  I had many severe complications after my bone marrow
       transplant which kept me in a hospital bed for almost a year.
   5.  I remember when gas was 18 cents a gallon.
   6.  My favorite color in clothes is brown.
   7.  People keep trying to add color to my wardrobe.  They have
        been a little successful.
  Very little.
   8.  My father has finally started buying me neutral colored clothes,
        but always throws in one colorful shirt in an attempt to make me
        wear it.  He is not successful.
   9.  My favorite television program is The O'Reilly Factor.
  10.  I drink three or four cups of coffee a day.
  11.  I don't do mornings.
  12.  In college I majored in astronomy and psychology.  Ipreferred
  13.  I dance about as well as Al Gore.
  14.  When I was young I wanted to be a pilot.
  15.  I didn't meet the height requirement.
  16.  When I was a boy I liked dinosaurs, Peanuts comic strips, and
        Star Trek.
  17.  As a teenager I loved to go in my room to read and to listen to     
  18.  I liked classical music and heavy metal.
  19.  My favorite subjects in high school were my science classes.
  20.  My worst subject was Phys Ed.
  21.  When I was young my parents were Captains in the Salvation
        Army, then my Dad switched careers to the United Way.
  22.  I have only watched a few minutes of American Idol.
  23.  When I was six, my Mom raised wild baby rabbits; at first she
         kept them in her bedroom slippers, then in a box.  Later we set
         them free in a field.
  24.  In third grade I had a large pet Australian rabbit named
  25.  My Mom decided that this would be his name, and that was the
         end of it.  I always hated the name.
  26.  I was raised Protestant and became Catholic at age 40.
  27.  During college I did a lot of sleepwalking, and I would
         rearrange the furniture in my sleep.
  28.  I would wake up wondering how the furniture got moved around.
  29.  Once I put my hand through a windowpane while I was asleep. 
         I don't think my landlady believed that I was asleep when I
         broke the window.
  30.  My wife is diabetic.  I give her two insulin shots a day.
  31.   I once had a job as a janitor in a hospital.
  32.  One of my responsibilities at the hospital was to take
         amputated limbs to the cemetery for burial.  It was a Catholic
         hospital, and they believed that even limbs should be buried.  
  33.  At the Catholic hospital I went to the department picnics.
         They drank beer and listened to polka music.
  34.  I hate polka music.
  35.  Drunk people are annoying to me, especially when they get
         rowdy and destructive.
  36.  Parents who don't discipline their children also annoy me.
  37.  I like 19th century classic British literature.
  38.  I almost drowned in a friend's swimming pool when I was nine
         years old.
  39.  One year for Halloween I went Trick or Treating as a tax
  40.  When I was very young my favorite television show was
  41.  In junior high school I was a Trekkie, but I grew out of it and
        became a Star Trek fan.  
  42.  There are 17 keys on my key ring.  I have no idea what ten of
         them are for.
  43.  My favorite soda is ginger beer -- the English kind, not the
        Jamaican variety.
  44.  I met my wife in a Starbucks coffee shop at a local
Barnes & Noble.
  45.  I dated Krissy for seven years before we got married.
  46.  On our honeymoon we toured a bat-filled cave, took an exotic
         animal safari, and visited ReptileLand.
  47.  Krissy and I spent our first wedding anniversary in a hospital
        room at Hershey Medical Center.  The nurses threw a little        
        party for us.
  48.  For a long time my favorite breakfast was hot dogs and
  49.  On Christmas morning when I was 14, I was delighted to receive
         the dictionary I had asked for.
  50.  Brussels sprouts are my favorite vegetable.

Thursday, October 18, 2007

I don't have kidney cancer

Our trip to Hershey Medical Center on Sunday was well worth the time and effort it took.  Stop-and-go traffic brought us to Hope Lodge later than anyone expected, but Krissy and I were up early Monday morning and arrived at the Cancer Institute shortly after 8:00 AM.  One of the advantages of getting there early was the short wait before the phlebotomist drew four or five tubes of my blood for testing.  Since my appointment wasn't until 11:20, we grabbed a quick breakfast in the cafeteria, then met with the Post Bone Marrow Transplant Coordinator to get some paperwork out of the way.  We were back at the Cancer Institute about 9:30 with nearly a two hour wait ahead of us.  Finally a nurse led us to an exam room where she took my vital signs and updated my medication list.  Everything looked good.
My oncologist walked into the room a short time later and greeted us warmly.  He really seems to like me; I'm not sure why.  He's told me that I'm one of the most treatment-compliant patients he has.  Maybe that's the reason.
Checkups follow a routine that's very familiar to me after all this time.  Dr. C. listens to my heart and lungs, and checks my lymph nodes for signs of enlargement.  He shines a light around inside my mouth to see if I have any painful mouth sores that bone marrow transplant patients are prone to.  I've never had any, but he checks every time just the same.  He has me lie on my back while he taps on my abdomen in various places.  I don't know what he's checking for, but as far as I know he hasn't found anything yet.  He asks me if I've had any symptoms of Graft vs. Host Disease.  GVHD is a kind of transplant rejection in reverse, where your donor's cells see your cells as intruders and attack them.  He asks me if my mouth has been dry, and so on.  I won't go into all the details.
The last thing Dr. C. did on Monday was check my lab results.  Everything looked reasonably good except that my immunities were too low again.  Now I'll have to be careful.  People with low immunities have died because their bodies couldn't fight off an infection.  But it could be worse.  There have been times when I've had almost no immune system and I've survived.  The annoying precautions will be the worst part.  I'll have to wear a surgical mask everywhere I go outside of our apartment.  People will stare at me and some will look anxious.  I'll have to wash my hands so often that the skin will get dry and irritated.  Large groups of people and anyone who is sick will have to be avoided.  I've been through this so many times that it's now tedious instead of frightening.
Dr. C. is confident that I will get over this immunity problem.  He decides to lower the dosage of my anti-rejection medication.  This should make my immune system stronger.  I hope so.  We'll have to wait and see. 
Earlier I wrote that our trip to Hershey was well worth the effort.  Here is the reason why.  My local nephrologist (kidney specialist) told me that an ultrasound showed a cyst or mass in my kidney.  I was worried because a mass is often cancerous.  When I was at my checkup in Hershey on Monday I asked Dr. C. if the mass could be cancer.  He told me that the ultrasound showed no mass in my kidney and, furthermore, two other tests ruled out the possibility of kidney cancer.  He told me, "You don't have kidney cancer.  Go home and enjoy life."  Krissy and I were thrilled.
I can't tell you how relieved we are that I don't have to deal with a third cancer.  The first two were more than enough.  This was my second cancer near miss in the past year.  Krissy and I are very grateful to all of you who prayed for and supported us during the past two years of our cancer ordeal.  We believe you played a large part in the positive outcome of my treatment.  Thank you all!  

Saturday, October 13, 2007

to the cancer clinic

Once again it's time for an all-too-frequent road trip to Hershey Medical Center's Cancer Institute.  On Monday I have a post-bone-marrow-transplant checkup with my hematologist/oncologist.  I need to be there two hours early for blood tests so that the lab can have the results ready for Dr. Claxton on time.  Since Hershey is a two-hour drive away, rather than leaving before sunrise on Monday Krissy and I will drive down on Sunday and stay overnight at Hope Lodge, the American Cancer Society's group residence for cancer patients and their caregivers where all of us can stay while in treatment at Hershey.  I'll be away from the computer on Sunday and Monday so I won't be posting any journal entries on these days.  I didn't want you to wonder if I had lost interest in my journal.
These checkups aren't too bad as long as they don't do a bone marrow biopsy.  I had a spinal tap once; bone marrow biopsies are worse.  But at least I'm making progress.  With my last appointment in Hershey I broke the four-week barrier.  For a long time Dr. Claxton scheduled my checkups four weeks apart.  Then he extended them to every six weeks, but each time I would have some sort of complication which would force me to go back after no more than four weeks.  This past August 30  marked the first time I stayed healthy long enough to keep my scheduled six week checkup.  There was no fanfare, but it was a relief nonetheless.
Another good thing about staying healthy is that I can drive us to Hershey myself.  This eliminates an often lengthy search for someone who has a free day to drive us there.  A number of times we have had to travel by bus.  
Several Hershey nurses have told us that they can make the same trip that we do in little more than an hour.  They must be aspiring NASCAR drivers.  I keep to the speed limit for the practical reason that I can't afford to pay a fine.  The whole way down and back other vehicles are passing us like we are riding in an oxcart.  Few things make a leadfoot angrier than a speed-limit driver in a No Passing Zone.  I'll be glad when we're home again. 
I'll see all of you on Tuesday.  This journaling is addictive.  I told Krissy that I might get five comments; I want to thank all of you for proving me wrong.  
Thanks, Sugar, for the graphic.

Friday, October 12, 2007

room to breathe

Having our own place again feels good.
My wife Krissy and I had to move out of our old apartment at the end of July.  We found ourselves staying at her parents' house for at least two months.  It could have been longer; I'm not sure.  Strange things can happen to your time sense when you worry that you might be seen as the houseguest who just won't go away.  But Krissy's parents are good people:  kind and generous. They knew we were in a tough spot and we had no one else to turn to.  We owe them a lot of gratitude. 
We finally moved into our new apartment almost two weeks ago.  This place is great!  It's large and cheerful, with two bedrooms and two bathrooms.  The second bedroom is my emergency shelter for when I have little or no immune system.  Here we followed my doctor's advice.  Our old apartment had one bedroom in the rear, which we used for storage.  The front room served as our living room/bedroom/kitchen.  It was like living in an efficiency with a very large closet.  Our new place gives us room to breathe. 
I took a photo of my bathroom the other night; as you can see, like our apartment, the bathroom is large.  Just before we moved in Krissy got me some dolphin shower curtains.  She knows I like dolphins because they're so intelligent, playful, and acrobatic.  I love the curtains.  They take the bathroom from cheerful to exotic.  They also match the blue and brown color theme of the apartment.
Michael (our Maine Coon cat) loves his new home.  It makes me happy to see him run and play for the first time in years.  He acts like a kitten even though he's nine years old.  He seems relaxed and completely at ease here, except when girls walk by the window carrying umbrellas.  This happened yesterday.  When Michael saw her he panicked, bolted to the second bedroom, and hid under the bed for half an hour.  I think the term "scaredy-cat" applies.
Not everyone has dolphins in the bathroom, a cat who resembles a raccoon, and a wife who stands by you through years of cancer treatment.  This apartment is already taking on our personalities, and I think it will be a good home.

Wednesday, October 10, 2007

Of DJs and Ginger Beer

                        Me and my non-alcoholic Ginger Beer


My name is John.  My wife Krissy writes the journal Sometimes I Think.  You may have heard about me from reading her journal.  I'm the guy who spent most of 2006 in the hospital recovering from a bone marrow transplant. 

I've included a picture of myself.  We have just moved into a new apartment and we haven't finished unpacking yet.  Here I'm taking a break to drink my favorite soda, Ginger Beer (the English variety, not the Jamaican kind). 

If you haven't seen a picture of me before, it might be like when you hear a DJ on the radio and form a mental image of him.  Then one day you see him and he looks nothing like you expected.  So . . . do I look like you thought I would?