2011
This year will be noted for the fact that I had to come to grip with having contracted cancer. Below is a chronicle, which was written for Kaiser's HIV Newsletter, but only part of it was used. The reason for the newsletter was to encourage HIV positive people to seek new treatment protocols being enacted at Kaiser's Medical Center. The newsletter article was thus edited for that point, while the whole exerience was much longer and more detailed. I have provided the Newsletter article as it appeared in Kaiser's HIV newsletter and the full version is a pdf download. However, I may try and submit the longer for publication, if I can find appropriate places to submit. Full version of article. Also, this year I decided to just post my letter to family and friends as well as send it, so click this: December letter.
“Mr. Nicholas I think you have anal cancer.”
Those are the last words any HIV gay baby boomer wants to hear. I went to see my Doctor because I thought I had a hemorrhoid that had gotten out of control in someway. I was mostly scared that some awful operation would be needed, taking months to heal and being very painful. As I lay on my side it took her mere seconds to diagnose my “hemorrhoid.” I was devastated, scared and freaked out all in one big bundle of an emotional onslaught, and since it was Thursday, I wouldn’t likely see Kaiser’s surgical unit before next week.
On the next Thursday I finally got to see the surgeon, and he confirmed visually that I have cancer and did a biopsy. By that time the sticker shock of knowing had worn off and now I just wanted to know about the treatment. He assured me that the existing procedure for treating my cancer is 95 percent effective. Of course this raised my spirits considerably.
After my examination we went to his office and looked back over my chart. He wanted to see when he had previously removed anal warts from me in the late 1990s. When he found it, he confirmed the biopsy had been precancerous then. So in some way, it was no surprise. However, I did have a check-up in early 2010. Then they used an upper GI endoscope and a sigmoidoscope to view both down my throat as well as up my intestines.
So somewhere between that time and July 2011, this cancer had started and grown rapidly, since now it had become a large mass. Because of the size of the tumor, I started feeling bad that I had not seen my doctor sooner. Why I had waited? While this thought would occupy some of my time, I could only dwell on the mistake for a short while when I realized there was no answer.
That being said, one of the more important things I learned was to try and catch a growth when it had begun, and to get it checked immediately. This was difficult for me because my understanding was that people often believe the growth is a hemorrhoid. By February I was able to feel it and I believed that’s what it was. What I didn’t recognize was it was growing rapidly. I reiterate: I learned if you have something that feels this way and you feel it is starting to obstruct the passage of your bowel movements, then make an appointment! Although I noticed this as early as April, I didn’t act until it was much further along. I missed the opportunity for a quick Doctor visit to confirm that I had a simple hemorrhoid, cancer, or something else.
However, now things are different. I learned that Kaiser San Francisco has instituted a protocol in which all HIV positive people are receiving a high resolution anoscopy examination, a quick and easy office procedure that should be able to detect pre-anal cancer (called dysplasia) cells. This is a different test than the one I mentioned above, requiring only a brief office visit, with very few, if any, side effects. And, like a flu shot this test will be done periodically for people with HIV.
One other missed clue for me was that I had started a non diarrhea like “leaking” back in December, and had begun using a couple of pieces of toilet paper, rolled up and placed at the anus to keep my underwear from being constantly dirty. This was generally after a bowel moment and probably included blood, although it was too difficult to tell. Of course having suffered through horrendous diarrhea, I assumed again that it was just some aspect of that, even though I wasn’t having diarrhea at that time. Suffice it to say, should I find myself in a similar situation, I learned it would be best to discuss these new problems with my HIV specialist provider.
For now my life would now be turned upside down, between the tests needed to confirm the extent of the cancer to all the preparations required to deal with the chemo and radiation. One of the most important of these early tests was to determine extent to which the cancer had spread. I did a number of tests, but the most effective of these was the one in which I was given some radioactive material and then given a PET Scan. The results of this test indicated the cancer was localized to the anus and had not spread to lymph nodes and other organs. This information was a game changer, from life threatening to non life threatening.
Of course all my close friends were supportive and none any less than those in Kaiser’s HIV Support group. They suggested I check to see if there were any potential studies applicable to my situation, and I found out, Ablation, was for people with HIV. I was able to reach the person working on the study at UCSF and learned this is for dysplasia, which has to do with the cells prior to having a tumor, and therefore I was not eligible. However he gave me the name of a person to speak with, for support, and after contacting that person I learned that he too had gone through the treatment 20 years ago, was HIV positive at the time and also had a large tumor. Finally, I felt real hope, since most of the people to whom I had spoken with previously who were suffering from anal cancel, did not have large tumors.
After the biopsy confirmed it was cancer, the next stop was oncology. I met with my oncologist who examined me and gave me their take on my situation, the chemo drugs that I would have and other relevant data, including information on side effects. Then I met my radiologists and went through the process again. I also met with the radiology staff so they could tattoo me with little marks that were used to line me up precisely with the radiation beam. I was also fitted with molded leg forms that allowed my lower body to be placed in the same exact position so the radiation would be administered effectively and consistently.
My treatment began August 22, which meant I started at oncology for my chemo and then I went immediately to receive my first dose of radiation. Radiation was given every day except weekends and holidays and was tailored to my cancer; and in this case required six weeks of treatment. While I had lamented, and greatly worried, about the size of my tumor, the flip side of that coin was it hadn’t metastasized.
Over the next six weeks I would go through two rounds of Chemo along with daily radiation. The first round of Chemo was difficult as I had side effects and we worked to prevent these in the next round. However, I was very fortunate to have been able to tolerate the radiation which can cause fatigue, but also “suntans” a portion of the area that is being radiated and must be treated with Aquafor to reduce the pain and effects of the radiation. Every Wednesday I would see my radiologist and every week he would ask me the same questions, are you in pain, and how do you feel. He also answered my questions. Finally the next to last week, after answering a question he asked, I blurted out, are we going to “get it.” And he said yes without qualifications.
Finally, the last week arrived, which also meant the last Wednesday doctor visit. On this visit, the nurse accompanied the doctor and he informed me that I am to continue my treatment of the area, as if I’m in radiation for the next four to six weeks. My PET scan would be in two to three months after which he would also want to see me. Both were very pleased with my ability to tolerate the radiation and treatment overall, although no one knew why this was so. The nurse reviewed a number details that I was to follow, and that I would be followed by my radiologist every six to 12 months for the next five years.
For me it is smiles all around and although I know I can’t answer “how” I was able to tolerate this, I do know my stamina going into treatment, my adherence to treatment protocols, as well as my positive attitude were all very helpful. It is true that this is one of the few cancers that can treated effectively and while it won’t known for several months whether it was successful, all signs point to this as being the most likely outcome. I look forward to recovering, and hope that once the tests are done, the cancer is gone for ever.
