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.