Last Modified: November 1, 2001
Copyright © 1998, James Lynch
I am a 48 year old cancer survivor who was initially misdiagnosed andtold I had 5 months to live. That was in May of 1997. As far as I cantell, it all started with a tooth ache.--Go figure!
In June 1996, I saw my dentist for mild pain in one of the lower molarson the right side of my jaw. My thought was that I may have lost partof a filling or some such thing. The tooth had split into quadrants butmy dentist felt it was salvageable. The sequence of events whichfollowed was the worst possible, a scenario of failure after failure, butto 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 wasexcruciating. The pain, coupled with my aversion to doctors, resultedin my first mistake. Rather than go to an emergency room, I triedto "tough it out' over the weekend. I ended up taking 6 to 8over-the-counter ibuprofen tablets every hour and a half until I couldno longer stand the pain and went into the hospital late Sunday night.While waiting to be seen, the pressure of the infection finally burstthrough somewhere around the base of my tongue. The ensuing gush ofblood and other fluids tasted horribly but within minutes I noted aprofound release from pain. When I was seen by the doctor, I was givena shot for pain and prescribed a broad spectrum antibiotic. About twoweeks later the infection was gone and the tooth was crowned. --Savedthat blasted tooth anyway!
In July 1996, I was in serious pain again. This time, in the upperabdomen and back. I was initially diagnosed with constipation but aftercloser scrutiny of my x-rays I was found to have kidney stones. Thelast of these stones passed in February 1997. Throughout this time Icontinued to have pain in the back and abdomen while a new symptomdeveloped, pain in the chest... like having a horse step on the middle ofyour chest. These episodes would last to around 45 minutes and requiredthat I cease movement and get as close to prone as possible. Quiteoften there was what I referred to as an "aftershock" within a few hoursand the same thing would happen. The doctors said my "ticker" was fine.
The cause of stones? Probably infection. The symptoms? Diminished but bynow nothing felt good in my stomach, I was losing weight, the horse wasstill standing on my chest, the abdominal pain was constant and now Ideveloped sharp pain just under my ribs about three inches below and tothe right of my sternum. Back to the doctor with my "personal diagnosis"of gall stones. The upper GI showed reflux and slight enlargement ofthe duodenum. Thank God for sonogram technicians. While looking forgall stones, she found enlarged retroperitoneal lymph nodes behind mystomach. One endoscopy and CT scan later, I was told I had a malignantulcer and lymphadenopathy in the retroperitoneal, mediastinal, hilar,carinal, and subcarinal lymph nodes. Also noted was pancreaticdisplacement and my liver tests were abnormal. Initial pathology oftissue from my stomach was a split decision between gastric cancer andgastric lymphoma. Closer scrutiny by a third pathologist ruled outlymphoma.
On May 8, 1997 my oncologist advised that I had metastaticgastric cancer and depending on current liver involvement, I could expect no more than 2 years survival. My options included gastricresection, extensive chemotherapy and I would never work again. Thegeneral flow of the conversation was not about cure but quality of lifevs. how long I had to live. I was referred to a surgeon for tworeasons. The first was to discuss the pros and cons of gastricresection and the second was to discuss the need for additional tissuesamples as the pathologists wanted a clearer picture of my cancer.
After determining that I would not survive gastric cancer, my focus wason 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 theadvanced stages of gastric cancer. Therefore, the only other task hehad to perform was a laparoscopy to obtain tissue from the largest of mylymph masses which was a 9x5 cm retroperitoneal mass. I wish I couldhave been there (conscious) to hear the "oops" when the surgeon slicedan artery and had to do a laparotomy to stop the bleeding. AlthoughI didn't appreciate the 6 inch incision, I still try to visualize thehumor involved when something like that happens.
Opening me up did afford the surgeon the opportunity to explore andvisualize the metastases. I remember, as in a dream, his discussionwith my wife after I was brought out of recovery. I thought I heard"Stage IV" and "5 months". Upon recovering sufficiently to carry on abrief conversation, I asked my wife if what I had thought I heard wastrue. She confirmed that the surgeon had told her I was in Stage IVgastric cancer and had 5 months to live. After my initial diagnosis,losing over a liter of blood and having a six inch incision instead afew small punctures and now being told I had 5 months to live, I wasbeginning to wonder, "OK, what's the good news?"
Five days after surgery I was released from the hospital. With a wifeand three children, the oldest was 12, I soon realized I had a purposefor my last 5 months, there was much to do to prepare my family fortheir loss. Insurance, powers of attorney, medical retirement,plans to pay down the mortgage on our house so my family would not haveto lose their home, finding just the right person to help my wife withher future and trying to insure that they would be all right after I wasgone. Worst of all was telling my 3 sons that I was very sick and Imight not be there for them in the near future. The list seemedendless. 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 ofto prepare my family for my death. I looked up and said, aloud, "OKGod, I'm ready." The feeling of nothingness was so strong I couldn'thelp but drop to the floor and fight the tears no more. I had 4 monthsto live. I shall never forget one conversation I had with God aboutthis time. I was sitting on our back patio trying to rationalize whyGod would do this to my family. Was I a bad person? Clearly, a mootpoint. 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 changemy diagnosis.
God bless my wonderful wife. She denied completely that there was nohope and forced me into a strict vegetarian diet after purging me withseveral weeks of fresh fruit and vegetable juices. She was going tomake me healthy even if it killed me. By this time I had dropped from155 pounds to 115 pounds and my oncologist was concerned that the weightloss was not good. So, as my stomach would allow, my diet expanded toinclude more rice and potatoes. Did I mention I was taking vitamins upthe kazoo? I should have because I took so many it made my throatsore. She even had me taking, what I lovingly referred to as "witchesbrew", a concoction of roots and herbs.
All of this was going on during that first month after surgery. Theupside was that I had little time for a strong inclination towarddepression. After all, I was dying. However, my next appointment withmy oncologist was, in fact, the good news I had asked about earlier.The pathologist's report from the retroperitoneal tissue sample wasfinally received. You could have knocked my doctor over with a featheras 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 chanceof being cured. If the thought of divine intervention hadn't crossedyour mind by now, please, let me plant the seed. I didn't ask God thatI not have cancer, just that He change my diagnosis. Be careful whatyou ask for when speaking to the Almighty!
My treatment plan included 6 courses of carboplatin (750 mg/m2) every 21to 28 days. After researching germ cell cancers, I discovered some veryunsettling facts. After conferring with an expert in the field atIndiana University, I learned that lymphoma and seminoma look verysimilar pathologically and the doctor had only heard of one othercase where seminoma had metastasized to the stomach. Therefore, withoutseeing the pathology report, he favored a diagnosis of lymphoma.Particularly unsettling to me since my mother had died of lymphoma. Tomake things worse, the use of carboplatin as a single agent was not thestandard of treatment in this country even if I did have seminoma. Thedoctor felt so strongly about this, he attempted several times toconfer with my oncologist but I found out later my doctor never returnedhis calls. I too pressed for some answers to these concerns but mydoctor only responded that if I wanted to be treated in Indiana, hewould look into transferring my case. A rather long commute since I livein California.
A test of faith? Perhaps, but I could hardly afford to be treated inIndiana, so the decision was based upon economics more than anything.
Six weeks after my initial dose of carboplatin my white cell count stillhadn't recovered and my white cell count was <2. I had togo onantibiotics and give myself 4 injections of neupogen (1 daily) to kickmy bones into high gear. Kick is the operative word because that'sexactly what my bones felt like had happened. My white count shot up to36 and I was given my second dose of carboplatin. This time at 700mg/m2. Even at this lowered dose, my white count rarely recoveredbefore 28 days but I never had to take neupogen again. After the 4thdose of carboplatin My CT scans revealed no mass >1 cm. I wasexperiencing something I hadn't felt in a long time, the absence of painand no more horses standing on my chest. After my 5th dose ofcarboplatin, an endoscopy revealed a completely healed ulcer and nocancer from tissue samples taken from the site. My oncologist feels Iam 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 myoncologist failed to see them. After reviewing the pathology reportsfrom my personal copy of my medical records, I read that one of thetests conducted revealed an elevated PLAP. Not knowing what that was, Ilooked it up using resources available on the Internet. PLAP stands forplacental alkaline phosphatase and is the most reliable tumor marker inthe diagnosis of metastatic seminoma. I advised my doctor of this andafter verifying the facts, the PLAP is one of the tests run on my bloodas 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 ofhours reading everything I could find on the subject and quite frankly,I was a constant annoyance during my oncology appointments. I hadquestions which were largely ignored by my doctor or I was given aperfunctory response. After this, I can't stress how important it isfor patients to be aware of their disease and to be actively involved intreatment decisions and options. Whether or not your doctor agrees. Ijust wish there were more doctors who felt the same way.
I've noticed that there are a number of other therapeutic activitiescommon among many cancer patients. Painting and writing seem to be themost common. I am no different. I found writing poems to be what camenaturally. I am neither a poet nor an artist but I found comfort inbeing able to express myself and what I was feeling through writingabout it. My last poem, oddly enough, I entitled "The Diagnosis".
-James Lynch, firstname.lastname@example.org