too stubborn to die

I Was a Guest Editor's Pick

Fri, 29 Aug 2008 06:46:31 GMT

I want to thank Jude of My Way for choosing me as a Guest Editor's Pick in Magic Smoke on August 8. It was an honor to be chosen among those she selected. If you haven't checked out her blog, please visit; it's an interesting read.

Tags: Guest Editor's Pick, AOL Journals, journals, blogs

Happy 5th, JLand

Fri, 22 Aug 2008 04:37:47 GMT

I wanted to write an entry tonight because this is the 5th Anniversary of AOL Blogs. I couldn't let this day go by without saying what JLand means to me.

I have been writing a JLand blog for less than a year now, about which I have received many thoughtful and concerned comments. I knew two years earlier, however, that JLand was a caring community where people would take the time and go to the effort to support and encourage others who they had never actually met. Even before I had gotten my bone marrow transplant, I was receiving a great deal of traditional mail from JLanders literally around the world wishing me well and offering thoughts and prayers that my transplant would go well. My wife, Krissy, often told me about the outpouring of concern for both of us in the comment section of her blog, and would read aloud comments left there for me by JLanders.

After my transplant, while I was an inpatient at Hershey Medical Center, Krissy would bring to my patient room each morning a stack of cards and letters from JLanders inquiring about my health and wishing both of us well. At Hope Lodge, where Krissy lived while I was hospitalized, the staff would keep our abundance of mail at the lodge office and would jokingly ask her if we had a fan club. The warmth and affection generously offered by JLanders played a large part in keeping my spirits lifted during the long year I spent in the hospital. All of you have my most sincere gratitude.

I learned that JLanders represented the best that humanity had to offer. Your interest in others continues today, not just for my wife and me, but also for other JLanders and people in general.

Happy 5th Anniversary, JLand! Your mutual interest and support for each other makes JLand a uniquely welcoming place.

John

Tags: AOL blogs, JLand, anniversary, bone marrow transplant, hospital, blogplugs

My cancer is not back

Sat, 09 Aug 2008 10:33:54 GMT

I haven't been able to write an entry for awhile, but I wanted you to know that my oncology appointment on July 28th went well.

My cancer is not back. When my oncologist returned from vacation he told me that the doctors who thought my cancer was back didn't have his experience in treating MDS. That's why they were mistaken.

He's quite pleased with my progress both with the transplant and with my kidneys. The reason my kidneys were not functioning as well as they had been was because of a medication I was taking. My oncologist is taking me off this medication gradually, and my kidneys have already begun to improve. I will be off this medication in about a week.

The only thing my oncologist is concerned about is my iron level. I have iron overload from the more than 100 blood transfusions I've had since my bone marrow transplant. My iron level is more than 7 times the normal level what it should be. In the near future, my oncologist is hoping to put me on a medication which will lower my iron level back to normal.

I want to thank every one for their concern, comments and prayers. Your support really means a lot to me. You made it easier to get through this. I'll do my best to keep you up to date on my future progress.

Tags: remission, cancer, MDS, bone marrow transplant, stem cell transplant, kidney damage, high ferritin level, blood transfusions, blogplugs

Bad News in My Blood Test Results

Wed, 16 Jul 2008 03:40:41 GMT

For several months recently my blood test results were quite good. They showed that I was doing well in many ways, and especially that my immune system was stronger than it had been since before my bone marrow transplant. My oncologist at Hershey Medical Center was so pleased that he reduced my blood test schedule from once a week to once a month.

Then, about three weeks ago, my lab results showed that my neutrophil count had fallen well below the normal range, which meant my immunities were low, and were actually on the edge of being dangerously low. I waited a week, all the while wondering if my immunities were getting weaker or stronger. But after a week, I felt that couldn't wait the remainder of a month to see how I was doing. Hershey's Post Bone Marrow Transplant Coordinator, the person I call when I have a problem, was away on vacation. Since I couldn't reach her, I turned to my local oncologist's office for help. One of the nurses there said that I could have labs done twice a month for a while, since my neutrophil count was low.

I had to wait another week, but I had the labs done. The results showed that my neutrophil count was very low, much lower than it had been two weeks before. This means that I will have to stay in our apartment almost all the time, and when I go out I'll have to wear a surgical mask everywhere. I'll also have to wash my hands frequently and use hand sanitizer often. I can't have fresh fruit or vegetables, I can have no fast food, and I must avoid crowds of people.

My wife Krissy called Hershey to see if I could have a Neulasta shot to raise my neutrophil count. We learned that not only was the Post Bone Marrow Transplant Coordinator still on vacation, but my oncologist was also on vacation and wouldn't be back for two weeks.

The doctor and nurse who are filling in for them don't know me. They said that since my neutrophil count is so low two and a half years after my transplant, it could mean that I'm having a relapse of cancer. If that's true, a Neulasta shot could further damage my bone marrow. They said I'll have to wait until my oncologist returns and determines what's wrong with me. I have an appointment to see my oncologist on July 28.

I'm not too worried about the possibility of a relapse. The substitute doctor and nurse may not fully appreciate how much of the last two and a half years I've spent with a dangerously low neutrophil count. Even though I'm not a doctor, I'm reasonably sure that the cancer isn't back. My oncologist has told me many times that neutropenia (a dangerously low neutrophil count) can be caused by something as simple as a mild viral infection which you may not even be aware that you have except for feeling tired. I have been tired lately.

I have a feeling that when I see my oncologist on July 28, he'll tell me that my cancer hasn't come back. I think he'll say that the substitute doctor doesn't have his personal experience with my condition. If I'm still neutropenic at that time, I may get that Neulasta shot.

Even though I'm not worried about cancer, I have to be cautious about being neutropenic. I can't afford to get sick. With such low immunities, any infection could be very dangerous. The last time I was neutropenic, I got a blood infection that sent my temperature up to 104.4 degrees and kept me in the hospital for a week. This time I haven't felt sick -- just tired. I hope it stays that way until my neutrophil count returns to normal.

Tags: Neutropenia, neutropenic,bone marrow transplant, stem cell transplant, oncologist, neutrophil count, Neulasta, blogplugs

The Man Who Hates Blogs

Fri, 27 Jun 2008 01:29:10 GMT

No matter what you try to do in life, someone will believe that your efforts are worthless. I had this fact proven to me again recently by a university PhD who paused during a presentation to launch into a five minute attack on blogs and online journals. Let me explain.

Not too long ago, my wife Krissy heard about a writer's meeting which was to be held at the local public library. The topic of the meeting was memoir writing, which is an interest of mine, so we attended.

The talk went well for a while as the university instructor and his female co-leader gave helpful advice about writing, with a focus on memoirs. Then, about 30 minutes into the talk, the man's attitude changed abruptly. He began speaking about blogs in a hostile, mocking manner, saying that blogs were worthless and boring (I believe the term he used was "mundane"), and he claimed that all blogs were written in "stream of consciousness." He was convinced that people who write blogs and online journals couldn't be considered real writers, and wrapped up his attack by saying, "Who'd want to read a blog, anyway?"

I wanted very much to stand up and walk out of the room midway through their presentation, but I forced myself to stay and listen to everything else he said, since I was planning to write him a scathing email.

When the presentation was over, I did walk out, while the audience stayed for refreshments. I was furious and I knew that if I talked to him that night I would have chewed him out in front of everyone there. I wanted to avoid that. Krissy, however, went up front to talk with the man. She told him that she and I wrote blogs, and that we've been told that we write rather well. To this he responded, "Not everyone who can use a keyboard is a writer." She tried to talk about this with him, but he just kept repeating that one sentence. Eventually he said that he might consider editing our work so that someday we might have some hope of becoming writers. Krissy refused his offer. She described him to me as being arrogant. Personally, I might go to him if I ever want lessons on becoming a pretentious snob.

When I'd calmed down a bit, I realized that this man had used arguments that anyone familiar with public speaking or debate would have recognized as being irrational. He might have read a blog or two that was not well written and assumed that all blogs were written that way. I was surprised that a college instructor (probably a professor) could have fallen into an illogical belief like this. Professors are expected to be clear thinkers. Also, despite his claim, all blogs aren't written in stream of consciousness, as anyone who has read a fair sampling of blogs would realize. There are many good blogs, including nationally known and respected blogs which are certainly well written. Instead of saying that he personally didn't like blogs, he tried to throw all blogs on the trash heap. I realized that he had not been giving his professional opinion that night. Instead, he had been expressing a pet peeve.

I never did write that scathing email. I saw that it wouldn't have accomplished anything. I could have given him a piece of my mind, but that wouldn't have changed his view of blogs. I got over my anger after a few days. I understood that I had been angry because he had put me down as well as Krissy and the many fine blog writers who don't deserve to be dismissed out of hand.

Everyone has a right to his own opinion, and if this one professor wants to harbor an unrealistic hatred of blogs and online journals, he's free to do so. My concern is that he may influence the minds of students and other professors, prejudicing them against blogs. Hopefully, one teacher can't do much damage to blog writers.

Maybe I'll write him a calm, thoughtful email about his irrational reasoning. I'll have to think about that.

Tags: Blogs, online journals, blog writers, journal writers, writers, university teacher, university instructor, professor, prejudice, irrational thinking, irrational argument, snob, arrogant, arrogance, pet peeves, blogplugs

A Snapshot of My Mom's Life

Wed, 28 May 2008 06:42:17 GMT

As many of you know, my mother passed away on April 16th, 2008, at the age of 76, following a long battle with advanced Parkinson's Disease. She was a fighter, but a decade or more of Parkinson's, combined with years of constant pain from severe osteoporosis, had worn down her resolve. At the end, I think she wanted to die.

I know that everyone's own mother is special to them, partly because she's their mother, and partly because every mother is unique in different ways, but I think my Mom was one of a kind. Her name was Kathy, she loved the smell of honeysuckle, and her favorite flowers were yellow roses. She liked spicy foods, especially foods seasoned with a lot of black pepper and horseradish. She never drank or smoked, but she loved her coffee. She liked sad songs and sad movies, and she struggled with depression all of her life.

She and my Dad adopted me when I was a small baby, and at the age of eight I was absolutely stunned when they told me that I was adopted. She had never done anything to suggest that I was not her natural child. My Dad once told me, "Never doubt that your Mother loves you," and I never did.

My Mom thought she was dumb, but I knew she wasn't. She may not have had much "book knowledge," but she was very smart with people. She could win folks over with a smile and a few words. I watched her talk salesmen into selling her merchandise at half price when the items weren't on sale and the salesmen had no obligation to cut her a deal. She claimed that she was shy, but if she was she had everyone fooled.

In many ways she had a hard life. For instance, when she was nine years old, she had to have a tonsillectomy, and her doctor opted to do the surgery in his office. He blindfolded her before he gave her the anesthetic. For the rest of her life she was afraid of the dark, afraid of going blind, and afraid of doctors. I know this was 67 years ago, but doctors back then must have known better than to do things like that. She would refuse to see a doctor no matter how sick she was, and it was only in the last year of her life that she agreed to see a neurologist and was diagnosed with being in the late stages of Parkinson's Disease.

This entry is necessarily an incomplete description of my Mom's life. I could write books about her experiences. I just wanted to give you a snapshot of a part of her life. In my Mom's memory, Krissy and I planted a yellow rose bush in a giant flower pot on our patio. The rose bush will remind us that my Mom is still with us, and that we'll all be together again someday.

Goodbye for now, Mom.

Tags: Mother, Mom, roses, yellow roses, Parkinson's Disease, osteoporosis, adoption, blogplugs

I Fell in the Shower and Injured My Neck

Mon, 19 May 2008 07:45:31 GMT

Six weeks have passed since I've felt well enough to write an entry. Much has happened to delay my writing, one incident being the death of my mother on April 16. I received a flood of online comments expressing sympathy and concern for my wife Krissy and me; I want to thank all of you who kept us in your thoughts and prayers. Mom will be missed.

The latest delay began on Sunday, May 4th. Krissy and I were getting ready for a two and a half hour drive the following day to see my hematologist/oncologist at Hershey Medical Center. Late that night I decided to take a shower to get a head start on what we knew would be an early, busy Monday morning. While in the shower I slipped and fell backwards, smashing the back of my neck on the rim of the bathtub. The pain of the impact stunned me, and the force of the impact split open a respectable length of skin behind my right ear. From the other end of our apartment, Krissy heard me fall like a bag of bricks, and she came running to help.

Though we had a lot left to do that night, we were forced to make an unexpected trip to the local Emergency Room. The pain in my neck and shoulders was severe, and we were afraid that I might have done serious internal damage. The ER staff took my injury too casually to suit my impatient mood. After I explained all the important details, the triage nurse handed me a beeper and told us to sit in the waiting room until someone from Registration was ready to see me. They were having a slow night at the ER, so there was no one ahead of me waiting to be seen. When I had been there three weeks earlier with what I had thought was bronchitis, they had taken me from triage directly to an exam room even though they had been quite busy that night.

Upon arriving in an exam room, the ER doctor had blood drawn to make sure my platelet count wasn't too low due to my bone marrow transplant. The lower your platelet count is, the more likely you are to have internal bleeding. Thena Radiology technician had me walk to the CAT scan unit. On previous visits the staff had always insisted on wheeling me over. I didn't know why this visit was different. The results came back before too long. My platelet count was quite low, but not dangerously so, and the ER doctor said the CAT scan images were normal. The doctor closed the wound on my neck with some kind of super glue. He told me to go home and resume normal activity. Krissy and I weren't sure if we believed him or not. The pain I felt certainly wasn't normal. We got home at about 2:30 AM.

Later that morning I drove us to Hershey. The neck pain was bad and my neck muscles were stiff, but I could turn my head and see in all directions well enough to drive safely, if not comfortably. My doctor's appointment went very well. My hematologist/oncologist said he believed my two cancers would never come back. He did order an Aranesp injection, though, to raise my hemoglobin, which was significantly low. We stayed in Hershey overnight at Hope Lodge, and I drove home on Tuesday.

A week after I fell, my neck hurt as badly, if not worse, than it did the night I fell. Monday, May 12th, Krissy called my local Primary Care doctor. Krissy explained my situation and the nurse said if we could get to my doctor's office in half an hour, my doctor would see me. I don't know how she does it, but Krissy gets things done. Seeing a doctor on 30 minutes notice is next to impossible.

We got there on time. My doctor examined my neck, then sent me downstairs for X-rays. My doctor said the X-rays showed that a piece of bone had broken off one vertebra in my neck. He told me to buy and wear a cervical collar, and he referred me to a spinal surgeon.

I saw the spinal surgeon the next day. He did a series of neurological tests on me, then sent me down the hall for more X-rays, about 15 of them, with my neck in all different positions. After a while, the surgeon came back and told me that my vertebra was not fractured, and that what had looked like a piece of bone was actually a calcification which had been there for a while. I wasn't sure exactly what a calcification was, but I have since learned that it is a hardening of soft tissue which is far less serious than a fractured vertebra. The surgeon told me that I had a sprained neck which would take at least a few weeks to heal. He scheduled me for physical therapy and gave me other instructions, which I'm following.

The pain is considerably less than it was a week ago, but it's definitely not gone. The cervical collar seems to be helping a great deal. I'm writing this entry, so you can be sure that I'm feeling better than I was. I expect to be fully recovered before another month goes by.

Do yourself a favor: Be careful when you take a shower. A sprained neck is very painful, and I could have been hurt much more seriously. All it takes is one bad step. Good health to you, your family, and your friends.

Tags: Bathtub falls, bathtub injuries, household falls, household injuries, sprained neck, x-rays, cervical collar, neck pain, blogplugs

Life Under Thundering Jet Engines

Sun, 06 Apr 2008 17:32:58 GMT

When my family moved to suburban Chicago in 1969, O'Hare International was the world's busiest airport. While our house was miles from O'Hare, low altitude airliners as large as Boeing 747s roared over us more often than one plane per minute, all day, every day. We also lived near a Naval Air Base. On some days fighter jets rumbled loudly over our house as they maneuvered to land at the Navy base. At first the unceasing noise of military and commercial jets was deafening, and we thought we would lose our minds. But after six months we somehow had learned to tune out the majority of the constant roaring. This may seem hard to believe, but human beings can adjust to almost anything, given time. If I stopped and deliberately listened for the airplane engines, I could hear them clearly. Even so the noise didn't seem as loud as it had when we first moved in.

We made many sightseeing trips to O'Hare during the three years we lived in Illinois. As a boy who hoped to be a professional pilot some day, these trips were a much anticipated joy. Certain areas of the airport had huge windows where we spent many hours over the years watching airliners take off and land. The massive jets would accelerate rapidly down the runways before slowly and with great effort becoming airborne. Once off the ground, the planes soared quickly upward and out of sight. But I was especially in awe of how pilots could bring a jumbo jet safely down from miles above the ground and place it almost gently on a runway. The descending planes appeared to land in slow motion even though they were moving quite rapidly. I also enjoyed watching planes taxi to and from arrival and departure gates. This allowed me to view these large airliners close up.

Sometimes on Saturday afternoons during the summer months, we drove near the ends of departure runways at O'Hare where we could watch planes take off as closely as possible. At these locations there were hot dogs stands that did a surprisingly good business. We would have hot dogs and drinks while enormous jets thundered directly overhead, seemingly low enough to reach up and touch. We not only heard but also felt the almost painful roaring of full throttle engines. This variety of Saturday supper may not be for everyone, but for those of us who enjoyed the novelty, such an exhilarating meal was a unique experience.

While I never realized my dream of becoming a pilot, the ambition led me to many fascinating childhood adventures. Even though I've kept both feet planted firmly on the ground, I will always have my memories of those three years in the shadow of O'Hare Airport. My childhood was deeply enriched by the presence of those thundering aircraft.

Tags: O'Hare Airport, O'Hare International Airport, jets, aircraft, commercial airliners, fighter jets

Bad News -- I Have Five Cavities

Sun, 30 Mar 2008 01:26:44 GMT

Yesterday I had my first dentist appointment in over two years. They took x-rays and gave my teeth a cleaning. The x-rays showed five cavities, which my dentist will drill and fill on May 1, provided my hematologist/oncologist approves of an invasive procedure being done on me. I'm fairly sure that he'll approve because the consequences of leaving cavities uncorrected could be far more dangerous than doing some drilling. Besides, my white blood cell count has been doing well lately, so there should be a minimum of risk.

The cavities have probably been there for at least a year, although they were probably smaller then. As some of you know, I spent about 10 months of 2006 at Hershey Medical Center recovering from a bone marrow transplant. During most of that time I was either too tired or too sick to get out of bed to brush my teeth. I should have tried to brush my teeth anyway, but often I just didn't have the strength to stand at the sink that long. Taking good care of your teeth after a cavity has set in doesn't help much, so all the brushing and flossing I've done since coming home may have prevented new cavities, but the old decay wasn't reversed by my good dental hygiene.

I expected my dentist to find at least one cavity, because I've been having rather bad pain in one tooth whenever something cold touches it. This pain has been occurring for about four months now. I called my dentist right away when the pain started, but she didn't have any appointments available until yesterday. I suppose I should have seen my dentist when I started feeling stronger about nine months ago, but drilling cavities back then would have been a much more serious procedure than it will be now. The chronic neutropenia (dangerously low immunities) I had until this past December would have made drilling cavities a major infection risk without first having a series of Neupogen or Neulasta injections to artificially raise my immunities. You probably wouldn't believe how much just one of these shots costs; when I was told for the first time I couldn't believe it. Because of the expense, doctors usually only order them when the risks to your health are severe. But based on my current lab test results, I think my dentist can now drill safely.

My dentist told me that I won't need to have any root canals or to have any teeth pulled, which I'm sure will be a relief to my hematologist/oncologist. I'm pretty happy about it myself. I'm also glad this dental work could wait until my health allowed the work to be done. I plan to be extra diligent in caring for my teeth from now on, even if I don't feel up to it in the future, because I know I will not enjoy having these five cavities drilled.

Tags: Dentist, cavity, cavities, bone marrow transplant, stem cell transplant, hematologist, oncologist, Neupogen, Neulasta, neutropenia, blogplugs

I Don't Appear to Be Having a Relapse

Mon, 17 Mar 2008 07:17:15 GMT

In my last entry I told you that I was getting tired and short of breath without much cause, and that I was waiting for my monthly lab results to see if I was having a relapse. This past Tuesday (March 11) I had my monthly lab tests done. The results were normal for me. I was relieved to hear this since I had been close to holding my breath for three weeks over my unusual symptoms. As far as Krissy and I could tell, there was nothing in my blood counts to indicate that there was anything wrong with my marrow, and my blood chemistry showed that my kidneys are chugging along at about 40% of normal function like they have been for months. *Whew*

Whenever I have labs done, I wait a few hours and then call my local oncologist's (cancer doctor's) office. A nurse there gives me any lab results that I want over the phone. After all this time they know me well and don't mind doing this for me. I like getting the results on the same day the tests are done. Naturally, Krissy and I can't interpret the results as well as a doctor can, but after spending almost a year at Hershey Medical Center, we can draw general conclusions from my labs.

Since the lab results didn't show anything obviously wrong, on Wednesday I called my transplant nurse at Hershey and asked her what they thought down there. She said she had told my transplant oncologist about my symptoms. He said that he saw no problems in my lab results, and that my symptoms could be caused by something as simple as a mild viral infection. My transplant nurse told me to relax, that she would call me if anything important turned up. She hadn't called as of Friday, and after a sleepy weekend I decided not to wait any longer to write this entry.

I plan to call two other doctors this week about possible causes for my symptoms. If these two doctors can suggest anything significant, I'll let you know. But the good news is that I don't appear to be having a relapse.

Tags: oncologist, bone marrow, bone marrow transplant, stem cell transplant, Complete Blood Count, kidneys, Complete Metabolic Panel