The day I found out I had cancer I informed my family. The next day I had two important phone calls to make. The first to my hematologist/oncologist to give her the news. I didn’t leave a message for her to call me back. I waited for her to be paged and pick up my call. I explained that I had seen a new GI and that he said I had adenocarcinoma of the small intestine. I felt like my announcement knocked her off her feet. She immediately wanted to make arrangements for surgery. I told her I would be having the surgery at the hospital that the GI practices out of and not the hospital that I had been going to for all my iron intravenous treatments where she practices.
My second phone call was to the oncology surgeon that my GI doctor recommended. I set up an appointment as fast as I could get one. On a chart on the wall in his examining room he pointed to the location of my tumor. It was in the duodenal, which is the beginning section of the small intestine. It is relatively rare compared to gastric cancer and colorectal cancer. He explained how he would cut the tumor out and do a resection of my intestine. He was the best in his field at this hospital so I felt I was in good hands. My GI and hematologist/oncologist were in touch before my surgery so everyone was on the same page.
On March 29, 2006 the surgeon removed a foot and a half of my small intestine. He also removed 12 lymph nodes for biopsy. We were all hoping the cancer hadn’t metastasized (spread). When I woke up in the recovery room I was in excruciating pain but I was alive. I was crying and telling my husband and the nurses the amount of pain I was in. They said they couldn’t give me anything until more of the anesthesia had worn off. My mother and sister had also been waiting with my husband so the surgeon met with all three of them afterwards to tell them the surgery went well.
The next day my GI doctor paid me a visit to see how I was doing and to tell me that all 12 lymph nodes were clear. The cancer had not metastasized. That was great news! I asked him if he just stumbled upon the tumor when he did his endoscopy. He firmly replied, “No. I knew exactly what to look for.” Thank God I had switched doctors when I did or I wouldn’t be here sharing this with all of you right now. My last GI did a colonoscopy and endoscopy the previous December and couldn’t find it.
When I was released from the hospital a week later I had a big basket of Mrs. Fields’ cookies and brownies sent to my GI’s office for him and his staff to enjoy. I was so grateful! I met with the surgeon after two weeks so he could take a look at the incision site. It was fine. He told me it was a slow growing cancer and I was very lucky it hadn’t spread. He suggested I get chemotherapy just to be sure. He sent me on my way and told me to gain weight. Of course, I contacted my hematologist/oncologist after the surgery and gave her the news. From now on I’ll just refer to her as my oncologist. I set up an appointment with her soon after. We agreed I would have the chemo treatments at her hospital so she could monitor me along the way. I scheduled an appointment to have a Porte catheter surgically put in my chest in which to receive my chemo treatments.
In the meantime, my oncologist placed a phone call to a doctor she knew at Memorial Sloane Kettering for a second opinion. After that doctor discussed my case with other doctors on a panel, it was decided that I didn’t need chemo. 1) The fact that the cancer hadn’t spread. 2) The fact I was so sick with my body starting to shut down prior to my surgery, played a big part in that decision. They didn’t think my body being in the condition it was in would handle chemo very well. The Porte catheter didn’t go to waste though. I needed more iron intravenous treatments to get my iron levels up to where they should be. So… they did the treatments through my port. That gave the veins in my arms a rest because they had pretty much collapsed as a result of all my previous treatments. Before my surgery, the nurses couldn’t find a good vein to use anymore and had to start using veins in my hands. I hated that because it really hurt!!!
Like I’ve said before, I don’t want to throw a lot of medical jargon at you. I’m telling you in the simplest of terms that we all understand. It’s important to find a GI doctor who knows what he is looking for when presented with the symptoms. If you aren’t happy with his findings, move on to someone else. It could be a matter of life and death.
So after spending a week in the hospital in December of 2005 and receiving a 6-pint blood transfusion, I wasn’t really feeling as well as I expected to feel in January of 2006. I mentioned some of my stomach issues to a coworker. She recommended her son’s GI doctor. She also said this doctor studied celiac disease for a hobby. I couldn’t wait to meet him. I set up an appointment right away. When I met with him in his office he told me he had once worked with Dr. Peter Green. I mentioned in a previous blog that I went to see Dr. Green at Columbia University in New York. I knew then that I’d come to the right place.
Things moved quickly once this GI was in the picture. He instructed me to have a lower and upper GI series. That is where you drink the barium drink and the technicians take x-rays of your body as the fluid is traveling through your system. If you’ve ever had to drink it you know exactly what I’m talking about. It is the grossest drink ever!!! The x-rays showed I had a blockage. It took hours for the barium to pass through me. I spent the whole day at the hospital. Following that, this GI performed an endoscopy. Unlike the first one I had many years ago, this one was done in a surgical center and I was given anesthesia. I didn’t feel a thing. My GI went down into my small intestines with a scope and took a biopsy.
On March 17, 2006 at a follow-up visit regarding the endoscopy results, my GI informed me that I had cancer: adenocarcinoma of the small intestine he called it. This is a rare form of cancer caused by untreated celiac disease for most of my life. The tumor was the size of a golf ball and was attached to my small intestine. I was bleeding internally, which was causing the loss of iron. Finally we had the answer to my severe anemia and why the iron intravenous wasn’t working. I asked him if he had treated other patients with this same cancer and what their outcome was. Since beginning his practice, he had only seen two other patients with celiac disease and this type of cancer. Neither of them survived. My outlook was bleak. I just sat there. Numb. He told me he couldn’t believe I was taking the news so well. He thought I would be crying hysterically. I told him that I’d been through so much crap that this was just one more stumbling block in the road of my life. I asked him what we were going to do about the cancer and we discussed it a bit further.
I left there in a state of shock. I drove home on what seemed like auto pilot. All I remember is the first song that played when I turned the radio on. It was Bad Day by Daniel Powter. How ironic right? Yes, it was a bad day but then again, I’d had a lot of bad days since 2003. Maybe this surgery would finally rid me of all my stomach issues. If I survived.
I arrived home and my husband was at the stove making dinner. He was mashing potatoes when I walked in. I stood in the doorway and simply said, “I have cancer.” I don’t remember his reply but I proceeded to tell him everything my doctor said. He went back to mashing the potatoes while I called my mother to give her the news. When I told her I had cancer, she said, “You’re kidding.” I said, “No… why would I kid about something like that?” I repeated to her everything the doctor said. Next I called each of my kids at college. I told them I would be having surgery on my small intestine to remove a blockage that was causing my vomiting issues, but I never mentioned the word cancer. I just couldn’t say that word to them. I didn’t want to scare them. I did my best to put on a happy face even as I was getting my living will and my last will and testament in order.
I’d like to give you a word of advice. No matter how old you are, write a will. I know it’s something that younger people don’t even want to think about but it’s so important. It’s a good idea to do it when you’re in good health and don’t have a serious illness looming over your head. Find yourself a good attorney and have them guide you through it. Luckily, my husband and I prepared our wills several years prior so I basically just updated everything and told my family where to find it if I didn’t survive.
In December of 2005, I went to the hematologist for my routine blood test. I told her how awful I was feeling. There were times I was so cold my teeth would chatter. I constantly heard a pounding in my ears or what sounded like a swarm of locusts. I walked my dogs in the backyard when I got home from work each day and I could barely stand up without holding onto the fence or a tree. She told me exactly why I was feeling so poorly. Remember I mentioned in a previous blog that the hemoglobin count doctors like to see is 12. Well… mine was now down to 3. She told me that a couple more days and my heart and kidneys would have failed. She admitted me to the hospital that very minute. My son, who had driven me to my appointment, was in the waiting room. She asked one of the office staff to bring him to her office and told him I was being admitted. I insisted on going home to pack a bag first but my doctor wouldn’t hear of it because of the seriousness of my condition.
The next thing I knew I was lying in a hospital bed and receiving a 6-pint blood transfusion. That’s more than half the blood in your body. This may sound stupid but I wondered if they would have to drain 6 pints of blood out of me before putting the new blood into me. The answer was no. The new blood would just be absorbed into my body. By the next morning I was sitting up in bed and feeling much, much better. Receiving 6 pints of iron rich blood did the trick. I was anxious to go home. I had a big smile on my face when my hematologist came in to check on me. I told her I was feeling good and ready to go home. She told me I would be staying the week so I could rest and undergo some testing. WHAT? It was the week between Christmas and New Year’s. I was hosting a New Year’s Eve party at my house. My hematologist wanted my GI doctor to perform an endoscopy and a colonoscopy to see if he could find anything. I had lost so much iron. It had to be going somewhere. However, his tests showed nothing. I was released at the end of the week and hosted my party after all. Happy New Year!
I don’t know if I mentioned that I love to do Sodoku puzzles. Actually, my son started doing them years ago and got me hooked. I found his book of puzzles recently and did a few.
I saw him a couple of weeks ago and handed him his Sodoku book back. He wouldn’t take it and told me I could keep it. I asked him why and he said because he was working on puzzle #24 in the waiting room the day he drove me to the hospital and was summoned into my doctor’s office. He never finished that puzzle. I flipped to it and sure enough it’s only half finished. He never wants to see that book again because it brings back bad memories. I’m so happy I’m alive and able to do Sodoku puzzles. I try to do one a couple of times a week and will do so until the book is finished.
Then I guess I’ll throw the book away, but not before I rip out the page with puzzle #24 on it. That… I just may save.
Until next time…