I was diagnosed with Stage IIIC Endometrial Cancer in August 2003 at age 41. After surgery, I endured 6 weeks of external radiation and only one internal radiation treatment. I had full pelvic radiation and radiation to my upper abdomen because cancer cells were found in the para-aortic lymph nodes. From the very first radiation treatment, I have suffered from chronic diarrhea - this condition is going on three years.
Following radiation, I went through 6 rounds of chemo. I was enrolled in a clinical trial and was assigned the arm that required I take Adriamycin and Cisplatin on one day and Taxol on the second day. This was repeated every 3 weeks.
I immediately had tingling in my feet after the first treatment, but my oncologist could not believe it was the chemo. Two weeks after the first treatment, I had a severe pain in my upper right abdomen that lasted a couple of hours. I went to the ER and tests did not reveal anything. The next day, I saw my oncologist who could not find a source for the pain. On the way home, the pain returned, and I thought I was dying. I called my doctor who told me to stop at the ER, and he would call in orders for a CT -which again revealed nothing. The pain stopped but returned 8 weeks later - on the morning of my 4th round of chemo. Since my oncologist could not find anything, he sent me to my PCP who ran tests for gallstones.
The ultrasound showed a bag full of gallstones. My surgeon wanted to wait until I finished all the chemo, but my oncologist insisted I have the surgery. After the surgery, the pain left.
The tingling and numbness in my feet began to worsen after the chemo was finished, and it began to spread to my legs. I also developed a severe case of vertigo fours days after my last chemo treatment.
By the time I was able to see a neurologist, the neurpathy was extremely painful. My ENT doctor had sent me to physical therapy for the vertigo.
To deal with the chronic diarrhea, and my oncologist sent me to a GI doctor. He has determined that the radiation has caused me to have radiation enteritis and radiation colitis - in his words "the radiation cooked your intestines."
My neurologist did a test on my legs that showed I have permanent nerve damage to the sensory nerves in my feet and legs - causing peripheral neuropathy. She has yet to find a medicine that I can tolerate. I went through 13 anedyne treatments this past winter which gave me some temporary relief. However, the numbness, pain, and tingling are as bad as ever. I recently had a neuroma removed from my right foot which helped with some of the pain, but I know my feet and legs are always going to be numb and painful.
Six months after my chemo ended, I had returned to work and was in the middle of teaching my U.S. History class when the terrible abdominal pain returned. That was November 8, 2004. For the next 18 months(24 hours a day/7days a week), I have been in pain, and none of the 11 doctors I have seen knows what to do. Ten out of the 11 say it has to do with the radiation and/or chemo, but the oncologist says "no way."
I have had every GI test available and the results do not show anything that could cause the pain. I have seen a pain specialist who has tried several nerve blocks - a celiac plexus diagnostic block, an epidural steriod injection, and an intercostal nerve block - and they only make the pain worse. I have even tried Durgesic patches who no relief. My GI doc thought it could be scar tissue and talked his personal surgeon into doing exploratory surgery. He found a couple of adhesions on my liver but said they could not have caused the pain. The surgeon said he thought it was neurological. An MRI showed a herniated disc at T8/T9 so my neurosurgeon offered surgery but could not guarantee it would help the pain - which it did not.
For the past two months, my doctors have had me in a "let's wait and see if it gets better" mode before they try something else. Of course, it is not better.
Between the neuropathy, the chronic diarrhea, and the chronic upper abdominal pain, it has become impossible to work. I had 4 surgeries this past school year and have been on sick leave since March. I can only eat one meal a day if I want to get anything accomplished.
Every time I see a doctor, they all assure me that this pain is not from a cancer recurrence. To be honest, I have been in pain for so long that I would welcome a cancer recurrence - at least I would know what I am dealing with and would have a treatment course to follow.
I feel like my doctors do not take me seriously. If one of their family members presented with my symptons, I am sure they would move heaven and earth to find help for them. I have told them that I feel like a hypochondriac, but they assure me that they believe I am in pain. The only thing is - no one wants to take the lead on this, and they keep passing me back and forth to each other.
Although my doctors are not sure what is causing the pain or how to treat it, I am very positive that the pain is an "after-effect" of the radiation and chemotherapy. I also have ocular migraines where flashes of light go across my eyes and I cannot see for about 30-45 minutes (try dealing with that while teaching high school students). The vertigo returns every six months or so. I have constant ringing in my ears and have trouble hearing what people say more and more. I get very little sleep because of all these problems.
I always said if I ever had cancer that I would not go through radiation and chemo, but at the time of my diagnosis, my doctor insisted that I was too young not to do this. Had I known about all the after effects, I might have passed and just took my chances. I believe quality of life far outweighs quantity of life.
At 44, I cannot imagine enduring this abdominal/thoracic pain, the neuropathy, the digestive problems, and everything else for 20 years, for 10 years, or for 5 more years. I have not had a pain-free day in over 4 years.
Next week, my 2-month moratorium is up, and I see my neurosurgeon to determine what, if anything, can be done to help me. Pain pills have not helped (and the ones I could tolerate at first have recently caused allergic reactions).
If I were Barbaro, they would have shot me right there on the track.