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Dear Worya Kahla Mehra Ma
At the age 23, I considered myself a very lucky man. I was always an entrepreneur and I received a lucky break. I owned and operated my own business, which was a package goods/convenience type store and related facilities. I owned them all and business was doing very well. I had a wife, two kids, and a house, and a nice income. Life was great.
One day while at work, I was moving some heavy objects at the store, which caused me to get a hernia in my pelvic area. So I go to the hospital and have the operation done and, while lying in the bed at the hospital, the day after surgery, my doctor comes in and says he sees a spot on my lung on my x-ray. This was normal protocol to take a chest x-ray before surgery. But he is kind of worried. He asked me to come back in 4-6 weeks for another x-ray to see if the spot on the x-ray has grown. Well, I went back and it had grown.
So, I make an appointment for a lung biopsy of that spot. The biopsy was done and I was sent home and told I would be notified of the results in a few days. Those were the longest days of my life. Sitting around all day, wondering, suspecting, whether the result was malignant or benign? That was very, very stressful. I was crying at any given moment, getting no sleep at all, just waiting for that informative phone call. Well, I got the call, everyone was sitting in the kitchen as I talked to the person on the phone to get my biopsy results. The voice said, Mr. Hitch, your tests were benign.
WOW, YAY, we all cried, clapped, jumped for joy. Even started to throw a little party together in jubilation. Then the phone rings again about 30 minutes later. I pick it up and the voice says, Hello, Mr. Hitch? She says I am very sorry to tell you this, but I read you the wrong diagnoses, your test results were malignant, you have cancer.
Well, you can't even begin to guess how I felt at that moment, and for the next two weeks. I was devastated, destroyed, suicidal and many other emotions that I won't discuss. To make a long story short, I was diagnosed with Hodgkins Disease, stage 2. I was now to get very strong radiation, five days a week, for nine months straight, AND I DID IT. My weight went from 185 pounds to 98 pounds. My appetite diminished completely. My mouth was so sore from burns from my treatment, that I could not even swallow my own saliva. I was constantly throwing up, or dry heaves, literally every 2 minutes for weeks. Can you imagine how sore your stomach muscles get? You whole body deprived of sleep for weeks at a time because of constant vomiting. Severe diarrhea, and a bad reaction to a lot of the medications that were prescribed for me. Loss of hair and muscle.
And of course, I lost my business and my savings. And I was the only person working, my wife was a homemaker and unemployed, with 2 small children. I think you can imagine how this story gets much worse.
The Social Security Administration was a total joke. I had to fight them tooth and nail for any little thing I received, and I had to go personally to most of these places, and I could barely walk, very immune-suppressed, but they didnt want to hear any of that. I had to come to their crowded, filthy, office and sit for HOURS in my condition with kids and adults coughing and sneezing and I am sitting in there with NO IMMUNE SYSTEM AT ALL. I'm feeling sick, embarrassed and humiliated. Why? Just so I can get receive a few food stamps to try to feed my family. The whole experience was terrible.
I would call my doctor every hour early in the morning. 2 am, 3 am, 4 am, begging him to PLEASE find something to make me stop vomiting. I cannot stand another second of this. Well, only time and my wonderful wife were the only two things that helped me get through this. There surely was NOT any drugs out there that made me feel one bit better, only time. And I would be dead now if it weren't for my wonderful wife. Word cannot describe how much she had helped me back then.
SO after a few years , I regain some strength, so I start working some odd jobs, trying to get back into the working world. ANOTHER LUCKY BREAK. I had been in remission now for about 2-3 years. There was a restaurant for sale in my town. So I begged, borrowed and pleaded with my friends and the bank for a loan to buy this restaurant. I DID IT AGAIN! I'm now back working in my own business again after losing my first one to cancer. So I take this old, run down place and turn it into a thriving well like eatery. So I own this place for about 15 years now (at that point).
Still can't save a lot because the two little children are now two big children going to four-year university out of state, and all the COSTLY things that go with it. Tuition for TWO every year, books, cars, car insurance, apartment. You get the picture.
So I am rolling out a pizza dough one night getting ready to make a pizza, all of a sudden I yell, OUCH!! There is a bump on thumb knuckle that looks like something accidentally hit it or a spider bit me. I keep on working the next few weeks. Well, that bite on my thumb is starting to bother me so I go to the doctor. He says it looks like fluid built up around the joint knuckle. He puts a needle in and tries to drain it but nothing comes out? He tries and tries again, nothing? So, the next week I am sent to a surgeon to have my BUMP removed and biopsied.
Well guess what? NON-HODGKINS LYMPHOMA, STAGE 3! YEP, thats right. So I go back to my original oncologists, the same ones who treated me 15 years ago. This time I'm on chemo, CHOP I believe it was. Well it seems like I am in hospital every other week now with my counts being so low, they cannot get a blood pressure reading. While laying in the bed at the hospital one day, my doctor comes in and I say, Hey doc, there's a little pimple looking thing on my arm, should we biopsy it also. He says, No, you're on chemo now. It's very doubtful its anything to worry about because you're on chemo now, and its not likely to grow while on chemo. OK I said, no problem.
But my wife insisted so he did another biopsy and sure enough, it was cancer. My wife was right again. So they changed my chemo to the strongest he could give me without killing me. Here again, needless to say, I lost my business, my life savings, my nest egg, my vehicles and my real estate. Everything was repeating itself all over again. The vomiting, weight loss, depression, lost my hair, and most of all my DIGNITY. I know it sounds weird, but I felt like a failure, AND STILL DO. All my creditors were, and still are calling wanting their money. Threatening letters etc. So my protocol was ONE YEAR of this heavy difficult chemo, with ALL the same effects and illnesses as with radiation, and even some more!
So after my one year, I am so happy the chemo is now over, maybe, just maybe I can start to enjoy waking up in the morning or just life itself. No more throwing up, no more midnight runs to the hospital, no more passing out. HURRAY,OVER, a chance at a normal life. WRONG!!
So I was feeling pretty good after I recuperated from my last chemo treatment only to find out I have to take the strongest, nastiest chemo again. WHAT LUCK! Is there no end to this? On my last visit to my doctor after all my chemo was done I was informed that he wanted me to get a Bone Marrow Transplant! WHAT? What is that? Well. I get my chemo again with all the related side effects. Then I get my BMT (Bone Marrow Transplant).
The first 2 days werent too bad at all. I figured I could handle this with ease. THEN THE BOMB HIT. I have never, EVER been so sick in my life. I had to use my sisters marrow, which caused even more problems for me, MANY MORE. I was flat on my back in the hospital for three months. Here I was again, a deathly sick, throwing up every five minutes, 24 hours a day. I think I am the worlds champion vomiter if there is such a thing. I was unconscious for about one month on painkillers.
So directly after that I developed very severe GVHD (Graft Versus Host Disease). I had constant diarrhea caused by GVHD of the gut. I had to have all my ducts in my eyes cauterized shut, which means a RED HOT NEEDLE was stuck in my eyes, while I was awake. They had to do this THREE times. My mouth now produces no moisture or saliva, which now causes very bad tooth problems. I cannot produce moisture or tears in my eyes anymore, which means I now have to put artificial tears in my eyes every ten minutes, all day every day. I cannot eat anything without water. Everything feels like a mouth full of dry cotton. I have bad vertigo. I get dizzy very easily. I have short-term memory loss. I have constant bone, joint and muscle pain.
My age is 45, but I was told I have the bones of a 85 year old woman, and that I sneeze to hard I may crack a rib! I also have severe neuropathy, which is no feeling in my legs and hands. They stuck pins and needles in my legs, held ice cubes and hot utensils on my legs to test them and I did not feel a thing at any time. All of these things I have been describing have been a direct result of chemo or BMT or GVHD.
I had to learn how to walk all over again just as if I was a 2 year-old child. There is much, much more to this story but this is all I am writing for now. Thank you very much for your time and I hope you enlighten someone else through one of the things in this story. I am now 3 years post transplant and doing fairly well.
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Surviving 3 Cancers !
Ive had three different types of cancer: (1.) melanoma on my upper right arm, (2.) malignant meningioma -- three brain tumors. and (3.) transitional cell carcinoma of the bladder -- three bladder tumors.
Treatments have included multiple surgeries, radiation to my brainstem area, and BCG bladder instillation immunotherapy. Even with three cancers, seven malignant tumors, I've never had chemotherapy. Chemo is matched to the cancer. There's not much chemo available for the types of cancer I've had.
The first cancer -- in 1976 -- the melanoma, was on my upper arm. It was found by accident as far as I was concerned, because I had gone to the dermatologist for a completely different reason. When the biopsy of that mole came back "rule out melanoma", he sent me to a surgeon. Back then, I had to go into the hospital for three days, but the melanoma was removed with a "wide excision", and they did not do the skin graft they had expected to do. It was malignant melanoma, level IV in the old grading system. Seven or eight other moles were surgically removed and biopsied that summer, but all were benign.
One year later I had to have a radical lymphadenectomy -- removal of the lymph nodes under that arm -- because the lymph nodes were enlarged, and there was a fear of metastasis, but the nodes were benign. The melanoma has been "looked for" and "expected" (as when my lung collapsed in 1989) many times since that original tumor 24 years ago, but has it has never returned. and all mole and lymph node biopsies since then have been benign. I've had no further treatments for the melanoma aside from the annual checkups for that for ten years (bloodwork, chest Xray, and doctor's exam) and surgeries scary because they expected to find metastatic melanoma. *
The second cancer was brain tumors, three of them over 14 years. The first one -- in 1986 -- was found in a peculiar way: I had left my ex-husband. He came and got me and signed me into the psychiatric unit of the hospital I worked in as a teaching nurse. (I had been falling down, veerng, and vomitng for some time.) I spent two weeks in that psychiatric unit, sometimes tied down with leather belts. No matter what happened -- falling down, throwing up, never being able to find my room, hitting my head when I fell, having to feel for the "real" light switch, as I "saw" more than one. even a seizure -- was interpreted as "getting attention". After two weeks in there, finally my head was scanned and a very large brain tumor was found in the cerebellar (balance part) of my brain.
That first brain tumor was an atypical meningioma (grade II). It recurred four years later in 1990, and this time was a higher grade -- malignant meningioma (grade III). After those "magic" post-malignancy five years of OK MRI's of my head, on the six-year checkup -- in 1996 -- there it was again: brain tumor #3, another malignant meningioma (grade III).
Several months later, I had to have a series of 25 radiation treatments for a small, inoperable part of tumor #3 that was near my brainstem. I had three posterior fossa craniotomies to remove the three brain tumors. MRI's of my head since the radiation in 1997 have been clear.
The third cancer -- transitional cell carcinoma of the bladder -- started with a rude awakening. One morning in August 1998, I woke up with pink urine. By the end of that month, two small bladder tumors had been found and removed. The bladder cancer recurred in January 2000, one tumor that was found by the doctor, smaller and before it bled visibly. It was removed. All of the bladder tumors were low-grade, non-invasive.
Because of the multiple tumors, I had a series of 6 BCG treatments via bladder instillation in April and May, 2000. Two cystoscopy checkups since then have been clear. During the radiation treatments and the BCG treatments, probably fatigue was the worst symptom. The treatment fatigue added to the cancer fatigue sometimes makes it hard to carry on, but, so far I have been able to live alone and to care for myself, like washing clothes, etc.
I have lost a lot: my nursing career, my marriage, my step-family. But I have gained too: learning that I can go on as an individual, no matter what. Learning about e-mail listservs where I can share my nursing knowledge, even though I can no longer hold a nursing job physically.
I still feel that there is a book inside of me waiting to come out. Usually, when people hear of my cancer history, plus my ex-nun, ex-wife, ex-teacher, ex-nurse histrory, the reaction is, "You shoud write a book !" It is an interesting story, but it is my life -- the only life I've known. I honestly can't imagine things any other way. I want to go on, helping others as much as I can. (I've just stayed alive, but some now refer to me as a "Long Term Survivor.") My survival seems to give others hope. I do want to share that.
The hardest thing to have and to go on with, is the overwhelming fatigue. Since the breakup of my marriage and the loss of trust is so interwoven with the cancer story, it is very hard to separate that anger and loss of trust from the cancer. I think a lot of the anger remaining is due to the cancer. But now I have the reputation for smiling a lot. I've been called "the giggler". Just carrying on, taking care of me, caring for others, at this stage of the game is a pretty big accomplishment. Sometimes, when I'm down, I feel like it would be so easy to just give up. But that kind of thinking frightens me, and I try not to stay there.
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