[MOL] James Lynch/Survivor Story

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OncoLink Survivor Story:
James Lynch
   Author: James Lynch
   Posted Date: January 25, 1998

Last Revision Date: Sunday, 25-Jan-98 17:27:05 EST 
Copyright © 1998, James Lynch
 
 I am a 48 year old cancer survivor who was initially misdiagnosed and told I 
had 5 months to live. That was in May of 1997. As far as I can tell, it all 
started with a tooth ache.--Go figure! 

In June 1996, I saw my dentist for mild pain in one of the lower molars on 
the right side of my jaw. My thought was that I may have lost part of a 
filling or some such thing. The tooth had split into quadrants but my dentist 
felt it was salvageable. The sequence of events which followed was the worst 
possible, a scenario of failure after failure, but to make a long story 
short, the tooth became massively infected. 

A large lymphadenopathy developed under my right jaw and the resulting fluids 
filled the right side of my neck until I watched them drain down and 
disappear below my collar bone. Unfortunately, this happened over a weekend 
and the pain was excruciating. The pain, coupled with my aversion to doctors, 
resulted in my first mistake. Rather than go to an emergency room, I tried to 
"tough it out' over the weekend. I ended up taking 6 to 8 over-the-counter 
ibuprofen tablets every hour and a half until I could no longer stand the 
pain and went into the hospital late Sunday night. While waiting to be seen, 
the pressure of the infection finally burst through somewhere around the base 
of my tongue. The ensuing gush of blood and other fluids tasted horribly but 
within minutes I noted a profound release from pain. When I was seen by the 
doctor, I was given a shot for pain and prescribed a broad spectrum 
antibiotic. About two weeks later the infection was gone and the tooth was 
crowned. --Saved that blasted tooth anyway! 

In July 1996, I was in serious pain again. This time, in the upper abdomen 
and back. I was initially diagnosed with constipation but after closer 
scrutiny of my x-rays I was found to have kidney stones. The last of these 
stones passed in February 1997. Throughout this time I continued to have pain 
in the back and abdomen while a new symptom developed, pain in the chest... 
like having a horse step on the middle of your chest. These episodes would 
last to around 45 minutes and required that I cease movement and get as close 
to prone as possible. Quite often there was what I referred to as an 
"aftershock" within a few hours and the same thing would happen. The doctors 
said my "ticker" was fine. 

The cause of stones? Probably infection. The symptoms? Diminished but by now 
nothing felt good in my stomach, I was losing weight, the horse was still 
standing on my chest, the abdominal pain was constant and now I developed 
sharp pain just under my ribs about three inches below and to the right of my 
sternum. Back to the doctor with my "personal diagnosis" of gall stones. The 
upper GI showed reflux and slight enlargement of the duodenum. Thank God for 
sonogram technicians. While looking for gall stones, she found enlarged 
retroperitoneal lymph nodes behind my stomach. One endoscopy and CT scan 
later, I was told I had a malignant ulcer and lymphadenopathy in the 
retroperitoneal, mediastinal, hilar, carinal, and subcarinal lymph nodes. 
Also noted was pancreatic displacement and my liver tests were abnormal. 
Initial pathology of tissue from my stomach was a split decision between 
gastric cancer and gastric lymphoma. Closer scrutiny by a third pathologist 
ruled out lymphoma. 

On May 8, 1997 my oncologist advised that I had metastatic gastric cancer and 
depending on current liver involvement, I could expect no more than 2 years 
survival. My options included gastric resection, extensive chemotherapy and I 
would never work again. The general flow of the conversation was not about 
cure but quality of life vs. how long I had to live. I was referred to a 
surgeon for two reasons. The first was to discuss the pros and cons of 
gastric resection and the second was to discuss the need for additional 
tissue samples as the pathologists wanted a clearer picture of my cancer. 

After determining that I would not survive gastric cancer, my focus was on 
quality of life for my remaining time. In speaking with the surgeon, we 
agreed that gastric resection was not an option if I was in the advanced 
stages of gastric cancer. Therefore, the only other task he had to perform 
was a laparoscopy to obtain tissue from the largest of my lymph masses which 
was a 9x5 cm retroperitoneal mass. I wish I could have been there (conscious) 
to hear the "oops" when the surgeon sliced an artery and had to do a 
laparotomy to stop the bleeding. Although I didn't appreciate the 6 inch 
incision, I still try to visualize the humor involved when something like 
that happens. 

Opening me up did afford the surgeon the opportunity to explore and visualize 
the metastases. I remember, as in a dream, his discussion with my wife after 
I was brought out of recovery. I thought I heard "Stage IV" and "5 months". 
Upon recovering sufficiently to carry on a brief conversation, I asked my 
wife if what I had thought I heard was true. She confirmed that the surgeon 
had told her I was in Stage IV gastric cancer and had 5 months to live. After 
my initial diagnosis, losing over a liter of blood and having a six inch 
incision instead a few small punctures and now being told I had 5 months to 
live, I was beginning to wonder, "OK, what's the good news?" 

Five days after surgery I was released from the hospital. With a wife and 
three children, the oldest was 12, I soon realized I had a purpose for my 
last 5 months, there was much to do to prepare my family for their loss. 
Insurance, powers of attorney, medical retirement, plans to pay down the 
mortgage on our house so my family would not have to lose their home, finding 
just the right person to help my wife with her future and trying to insure 
that they would be all right after I was gone. Worst of all was telling my 3 
sons that I was very sick and I might not be there for them in the near 
future. The list seemed endless. It wasn't. 

About a month later, I remember standing alone in my living room, looking 
around and realizing that I had done everything I could think of to prepare 
my family for my death. I looked up and said, aloud, "OK God, I'm ready." The 
feeling of nothingness was so strong I couldn't help but drop to the floor 
and fight the tears no more. I had 4 months to live. I shall never forget one 
conversation I had with God about this time. I was sitting on our back patio 
trying to rationalize why God would do this to my family. Was I a bad person? 
Clearly, a moot point. Were there other forces at work and was this really 
God's will? I asked Him. I also asked that if this was not His will, that He 
change my diagnosis. 

God bless my wonderful wife. She denied completely that there was no hope and 
forced me into a strict vegetarian diet after purging me with several weeks 
of fresh fruit and vegetable juices. She was going to make me healthy even if 
it killed me. By this time I had dropped from 155 pounds to 115 pounds and my 
oncologist was concerned that the weight loss was not good. So, as my stomach 
would allow, my diet expanded to include more rice and potatoes. Did I 
mention I was taking vitamins up the kazoo? I should have because I took so 
many it made my throat sore. She even had me taking, what I lovingly referred 
to as "witches brew", a concoction of roots and herbs. 

All of this was going on during that first month after surgery. The upside 
was that I had little time for a strong inclination toward depression. After 
all, I was dying. However, my next appointment with my oncologist was, in 
fact, the good news I had asked about earlier. The pathologist's report from 
the retroperitoneal tissue sample was finally received. You could have 
knocked my doctor over with a feather as he explained I had Stage III 
extragonadal seminoma with an extremely rare metastasis to the stomach. I 
should add that during my diagnosis, my oncologist advised I had normal tumor 
markers for AFP and hCG. (Common tumor markers for germ cell cancers.) Now I 
had a 50/50 chance of being cured. If the thought of divine intervention 
hadn't crossed your mind by now, please, let me plant the seed. I didn't ask 
God that I not have cancer, just that He change my diagnosis. Be careful what 
you ask for when speaking to the Almighty! 

My treatment plan included 6 courses of carboplatin (750 mg/m2) every 21 to 
28 days. After researching germ cell cancers, I discovered some very 
unsettling facts. After conferring with an expert in the field at Indiana 
University, I learned that lymphoma and seminoma look very similar 
pathologically and the doctor had only heard of one other case where seminoma 
had metastasized to the stomach. Therefore, without seeing the pathology 
report, he favored a diagnosis of lymphoma. Particularly unsettling to me 
since my mother had died of lymphoma. To make things worse, the use of 
carboplatin as a single agent was not the standard of treatment in this 
country even if I did have seminoma. The doctor felt so strongly about this, 
he attempted several times to confer with my oncologist but I found out later 
my doctor never returned his calls. I too pressed for some answers to these 
concerns but my doctor only responded that if I wanted to be treated in 
Indiana, he would look into transferring my case. A rather long commute since 
I live in California. 

A test of faith? Perhaps, but I could hardly afford to be treated in Indiana, 
so the decision was based upon economics more than anything. 

Six weeks after my initial dose of carboplatin my white cell count still 
hadn't recovered and my white cell count was <2. I had togo on antibiotics 
and give myself 4 injections of neupogen (1 daily) to kick my bones into high 
gear. Kick is the operative word because that's exactly what my bones felt 
like had happened. My white count shot up to 36 and I was given my second 
dose of carboplatin. This time at 700 mg/m2. Even at this lowered dose, my 
white count rarely recovered before 28 days but I never had to take neupogen 
again. After the 4th dose of carboplatin My CT scans revealed no mass >1 cm. 
I was experiencing something I hadn't felt in a long time, the absence of 
pain and no more horses standing on my chest. After my 5th dose of 
carboplatin, an endoscopy revealed a completely healed ulcer and no cancer 
from tissue samples taken from the site. My oncologist feels I am cured and I 
didn't have my 6th course of carboplatin. 

I feel it is important to note that I did have tumor markers but my 
oncologist failed to see them. After reviewing the pathology reports from my 
personal copy of my medical records, I read that one of the tests conducted 
revealed an elevated PLAP. Not knowing what that was, I looked it up using 
resources available on the Internet. PLAP stands for placental alkaline 
phosphatase and is the most reliable tumor marker in the diagnosis of 
metastatic seminoma. I advised my doctor of this and after verifying the 
facts, the PLAP is one of the tests run on my blood as part of my 
surveillance routine. Guess I did have a tumor marker. 

The point is, cancer is the personal property of the person afflicted. No one 
cared more about my cancer more than I did. I spent hundreds of hours reading 
everything I could find on the subject and quite frankly, I was a constant 
annoyance during my oncology appointments. I had questions which were largely 
ignored by my doctor or I was given a perfunctory response. After this, I 
can't stress how important it is for patients to be aware of their disease 
and to be actively involved in treatment decisions and options. Whether or 
not your doctor agrees. I just wish there were more doctors who felt the same 
way. 

I've noticed that there are a number of other therapeutic activities common 
among many cancer patients. Painting and writing seem to be the most common. 
I am no different. I found writing poems to be what came naturally. I am 
neither a poet nor an artist but I found comfort in being able to express 
myself and what I was feeling through writing about it. My last poem, oddly 
enough, I entitled "The Diagnosis". 

-James Lynch, jelynch@thegrid.net 
 
 

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