Re: [MOL] James Lynch/Survivor Story 
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Re: [MOL] James Lynch/Survivor Story
Great story. Much to be learned by nutrition and dedication of the human
> See Today's OncoTip
> Abramson Family Cancer Research Institute
> 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
> 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, firstname.lastname@example.org
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