Beat it twice

Posted on November 2, 2011 by milliontoone

The first time I was diagnosed with stage 3-4 esophageal cancer and was told I had a 5 – 20 % chance from various doctors. One year after chemo and a brutal operation, I was running 30 miles a week.

Four and a half years later I couldn’t walk up a flight of stairs. I was misdiagnosed. I was told my symptoms were psychosomatic and I was having trouble dealing with the fact I survived. A month later I was in the hospital and on my deathbed. I had a malignant lymph node between my vena cava and liver, and they can’t operate. So next – aggressive chemo and radiation. I go from 180 to 120 lbs. No one thinks I’m gonna make it. My doctors tell me most people don’t get through it and have to discontinue therapy. Those who do get through are in rehab.

One year later at 47, I am 170 lbs and can do 100 push-ups. Take that cancer. I will leave this place when I’m ready. Stay strong. Stay hopeful. Kick it.

 

Posted in Esophageal Cancer | Leave a comment

Thought once was good enough, I did my time.

Posted on August 29, 2011 by grandmainwalden

I was awful sick in April 2006 and at first I thought it was from something I ate, and took some antacid that did not help and only got worse over the next two days. Finally after a night of no sleep and terrible pain, I could not bear it any longer and could not get out of bed all day. I agreed to go to the ER. The nurse knew from the start I was quite ill, and the doctor said I was not going anywhere until they figured out what was wrong.

After some blood work and other tests they decided on a CT scan of my lower belly. I could not say where the pain was, but that it was intense. They gave me something for nausea and pain. Off we went to have the scan. They told me there was no one to read the scan so it was being read in New Zealand via Internet. I thought, “How high tech,” but was thankful for the resource. The report indicated that my appendix was the supposed cause of the problem and needed to come out asap. Next, we waited for the surgeon on call to get there, as the regular one was away on vacation. I did not pay attention to time, but the hours passed as each of these events went by. Finally we headed to the OR with everyone ready to do the job of removing my appendix. Afterwards the surgeon came in to see me in the recovery room and said all went well, but it was the thickest appendix she ever saw.

A week or so later, I visited the now-returned regular surgeon in his office who had received the pathology report. He said I was healing well with one exception. I had an area that was still open, but doing ok. He said I might find the pathology report to be interesting. I asked what he meant, so he said he would go over it with me. He then went into detail of how they found a tumor, not any tumor, but a rare 5+cm tumor called a carcinoid. He warned not to get too distressed, that we would look at our options. He did say this was a rather large tumor and it was likely that I would need more surgery, and then we would see from there.

So, back to the drawing board. A month later I was having my colon resected to make sure no lymph nodes were involved. Thank heavens, they were not. So we then decided on the follow up and made a plan to do CT scans every so often, and colonoscopies, etc. I was ok!

In April 2008, I went for my annual mammogram but got called back for a repeat. I just knew it was not good when the girl said she was bringing in the radiologist. He told me flat out that I had a very invasive breast cancer and needed to be followed up asap with the surgeon for a biopsy, and make plans for surgery. I was leaving the next day for vacation. Oh yeah, what a great trip that would be with all that to look forward to. Yup, you guessed it. It was cancer again and not just any, but HER2+ and quite invasive, and had spread to 4 of 11 nodes, so chemo would have to happen too. So, I was off and running again. I had 3 surgeries – finally ending with a mastectomy, chemo from June to September, Herceptin beginning August and continuing weekly for 12 months, and 33 radiation treatments. Now I am ok. I just do follow up and have some lymphedema to deal with every day. Not bad to be living proof that this stuff is working – the other options aren’t so great.

Posted in Breast Cancer, Carcinoid Cancer | Leave a comment

I’m a 5 year survivor of a rare cancer

Posted on June 1, 2011 by grandmaturtles

I was diagnosed in 2004 at the age of 47 with what was known as a gay man’s disease – anal cancer.  I was one of two people in my state to have this type of cancer.  I never had any of the symptoms except for problems passing a stool.  No blood, no pain.  I was first diagnosed with diverticulitis and was scheduled for a colonoscopy in July 2004.

In May 2004, since I couldn’t bear the problem of not being able to pass a stool, I went to the Emergency Room and that’s when the anal cancer was discovered.  I had a tumor that was located on the anal verge that was the size of a small lemon, about 8 cm in size.  I underwent numerous tests and even though I couldn’t have a normal colonoscopy because of the size of the tumor, I was injected with Botox in the sphincter muscles to try and relax the area, but it didn’t work.

Over the course of the next two weeks, I had a port installed, my tattoos for radiation applied, and was staged at III B, because of node involvement. I had 6 months of chemo consisting of 5-FU (fluorouracil) and cisplatin and when that was over I started radiation for 7 weeks.  In March of 2005, I underwent extensive surgery to remove what was left of the tumor (about 4 cm) and nodes in the area.  I was told that if I had waited for that original colonoscopy, I would have died beforehand.

I continue today to have many after effects from the treatment I had, consisting of digestive problems, severe neuropathy, bathroom issues and more, but guess what… I’m alive and living life to it’s fullest potential.  I’ve decided to pay it forward and am a buddy-giver to newly diagnosed patients who have heard the words, “You have anal cancer!” I’m also involved with many different foundations to help get the word out about anal cancer, in hopes that if you’re detected early enough, you will survive this demeaning disease.

Posted in Anal Cancer | 1 Comment

My Story

Posted on April 6, 2011 by ostomyvisitor

Hi, I’m Larry Pilarski… I’m a Cancer survivor…  12 years ago I was having problems with my bowel movements. I didn’t think too much about it because I thought I had, as my Mother called them Piles, or  Hemorrhoids. After about 6 months I decided to have my doctor check me. I told him I thought I had hemorrhoids and he sent me to the hospital for a barium enema screening for cancer.

I was so relieved to find the results were negative BUT the blood in the stool didn’t subside… It didn’t get worse it just was still there… So again I thought hemorrhoids — I figured I could live with that, after all my Mother did!

This went on for another year and I told the doctor I still had this problem. He sent me again for a test … This time it was a sigmoidoscopy. Again the test came back negative. And again the bleeding persisted. Finally I said to my doctor. “Listen something is wrong! Everything is negative yet I still have blood in my stool!” He makes an appointment for me to see a surgeon and have my “hemorrhoids” removed. I’m in the surgeons office expecting to have a few cuts done and thinking my problem will soon be over. The surgeon tells me “Bend over.” and he shoves what looks like a small telescope up my behind.  Then the surgeons says, “You don’t have hemorrhoids… I think it’s a little worse, I’ll have to take a cutting.”

As soon as he said ‘cutting’ I thought “Oh, Oh Cancer.” The doctor told me he would get back to me in a couple of days. He did and told me he had made arrangements with the hospital — I had to be operated on — IMMEDIATELY. I had colon cancer. A good deal of my colon was removed. I had to have a colostomy… meaning I would no longer have use of my rectum.

It wasn’t the easiest thing to deal with. While in the hospital I was shown a short film on changing a colostomy bag, that’s all! What made it worse was there was no one to turn to for help, no one to talk with except my surgeon who I saw every three months for “follow-ups.”

I looked all over town, to no avail, for a support group I might join. I searched the city and county web sites and again found nothing. Finally, after six months, at one of my doctor follow-ups I mentioned there were no colostomy support groups in the area. In fact, none in the entire county! The doctor looked at me, smiled and said jokingly, “Why don’t you start one?” When I left his office I started to think about this… “Why not start one!” I began to research and read everything I could on Colostomy, Ileostomy and Urostomy.

I wrote ostomy supply manufacturers and received tons of information. Then I decided to write a small booklet of tips. Things I had picked-up and could share with others. I called it The Ostomates Owners Manual – Techniques You Should Know When Addressing Your Stoma. I had several doctors and nurses read it over and correct  any mistakes I may have made. If you would  like a  copy of the  booklet you can get it free. Just send an email to: Ostomyvisitor@aol.com. Not only will you receive the download link to the book, you’ll also receive our monthly newsletter, The Ostomy Visitor, full of advice, tips and humor.

The writing of that booklet encouraged me to start  the support group I searched for so fervently.

The Bayonne Ostomy Alliance — became a reality!

If you or someone you know is in a similar situation, have them email the alliance at ostomyvisitor@aol.com or give us a call at 201-339-5251. Our meetings are the second Wednesday of every month, from 2 to 3 PM at the Bayonne Medical Center (29th Street at Avenue “E” in Bayonne, NJ 07002).

Posted in Colorectal Cancer | Leave a comment

Cancer Free Since Mid-1990′s, Metastases Diagnosed Last September

Posted on January 27, 2011 by Jill M

I had breast cancer surgery (modified mastectomy) along with chemo and 18 mos. of tamoxifen in 1993. Then came my Mets diagnosis in September of 2010. I am currently on Femara. My cancer turned up in most all my lymph nodes and my ovaries-possibly bladder. I am fighting Heart and Soul and will do whatever it takes without sacrificing some sense of Quality of life. Always try to do the next right thing!

Posted in Metastatic Breast Cancer | Leave a comment

Survivor Bests Both Testicular and Stage 4 Spinal Liver Cancer

Posted on December 28, 2010 by David D

My name is David D and if you have ever had lower back pain than you should see a doctor because this was one of my symptoms to cancer. I have survived cancer twice – testicular and stage 4 spinal liver cancer. My hospital was Indiana University Medical Center, now known as the IU Simon Cancer Center.

Posted in Testicular Cancer | Leave a comment

Breast Cancer Survivor only 36 When Diagnosed

Posted on December 28, 2010 by Julie Fay B

I found my lump in my breast July 2008. I had a mammogram, MRI and biopsy done in Aug 2008. I found out Aug 18, 2008 I had breast cancer. I was only 36 years old. I had no family history. I had a lumpectomy done Sept 2008. I had 6 rounds of chemo, 33 radiations and tamoxifen that I have to take for 5 years. I finished my last radiation may 1 2009. And am doing great. I get check ups every 6 months. I’ve been cancer free since May 1 2008. I was stage 2a invasive ductal carcinoma.

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Survivor Andrea M. Details Ovarian Cancer Fight

Posted on December 8, 2010 by Andrea M

I had been telling everyone “I am just not feeling right.” (For nearly a year)…I went to my primary doctor and he said, “I will bet it’s your gall bladder” and sent me for tests…NOPE…those tests came back negative…”Maybe it is a gastro issue, let’s send you for an endoscopy and colonoscopy” OK, I’ll do anything to get rid of this full feeling that I have all the time. NOPE – test results were negative…so I was just resolved to the fact that I was eating the wrong foods and I would change my diet and see how that worked. It didn’t.

Several more months went by. On July 4th, the LOVE of my life proposed to me. We decided to get married in October. We had been living together for several years and raising my daughter (11) and his daughter (10). In August, I confided in my mother that I was having trouble going to the bathroom, and after a particularly painful episode, my fiancé was concerned that it might be a bowel obstruction and that I should go to the ER.

I did…and my life was forever changed! The ER doctor wanted to send me for a CT scan. This was probably the ONLY test I had not had…so why not? Later I asked what the CT showed and the ER doctor said it showed that the lymph nodes in my abdominal cavity were enlarged. When an Oncologist came to my room the next day, it seemed not only were my lymph nodes enlarged, but I also had a mass on my right ovary. More tests needed to be done to confirm the possibility of….ovarian cancer. I frantically called my fiancé and told him what the doctor suspected. I also told him I wanted a second opinion. Imagine the answer that I was waiting all this time for was given to me, but it was not the answer that I wanted.

Then I found my surgeon. He was/is the most compassionate man and put me at ease. He agreed with the original diagnosis. I met him on Tuesday and had surgery on Friday. I told my fiancé before surgery…”If it’s bad we will cancel the wedding”. When I awoke, he was there with tear-filled eyes…I knew our worst fears were confirmed. The pain meds made it easy for me not to think about what was to come. I had a radical hysterectomy with optimal debulking. When my surgeon came in to see me, he told me I had Stage IIIC ovarian cancer, but he did not want me to think of the stage or the diagnosis or even the prognosis. He wanted me to start thinking about getting well. At that VERY moment…the focus kicked in. I remember asking the nurse to get me up and I started walking. I was out of the hospital in three days. I also called my fiancé and told him the wedding was not off…it would go a planned.

At home I rested but made sure that I did laps around my house 4 times a day. Before I knew it three weeks went by and I was having the 47 staples removed. Not long afterward, I began six chemotherapy treatments every 21 days of Carboplatin and Taxotere.

My first chemo was set for October 1st and the wedding was scheduled for October 24th. How was I going to do this? You know what??? I just did. The first chemo wasn’t really that bad. I slept for a few days, but that was the worst of it. My family and friends lent a hand around the house, made meals for my family, and helped with the wedding plans. I asked my Oncologist if it would be possible to postpone my second chemo by four days so that I could enjoy my wedding. He agreed and chemo number two was done two days after I said, “I do”.

I have now have had eight treatments, with two more scheduled. In between my treatments I focus on getting well and spreading the word about ovarian cancer, a disease that I knew nothing about prior to my diagnosis. I became captain of a Relay For Life Team “Fighting Like Girls”, in Spring Hill, FL. I have designed two t-shirts that I am selling to raise funds for my team.

My Oncologist gave me two months off from treatment, and we will see if my body can keep this disease out of my system. My mindset is good. I do believe that with a positive attitude, strong support network, excellent medical staff, and the LOVE of my family I will win this fight.

Posted in Ovarian Cancer | Leave a comment