My name is Alma. I was diagnosed with colon cancer on July 20th, 2011, at the age of 30. I was suffering from various symptoms for about 2-3 years prior to my diagnosis, but because there was no family history of colon cancer and I didn’t fit the typical profile of a colon cancer patient (such as being 50+ years of age, unhealthy eating habits, sedentary lifestyle, etc.), the doctors never once thought of having me go through a colonoscopy. Instead, I kept hearing that I was “young and healthy” and that I had irritable bowel syndrome, even when I drastically changed my diet, cut off all the “offensive” foods per doctors’ recommendations and still wasn’t feeling any better.
I kept going back to the doctors, seeking answers for my bothersome symptoms, which included severe constipation (I had an average of 2 bowel movements per week, sometimes less), bloating, indigestion, inability to pass gas, abdominal cramps and distention. They kept on dismissing my symptoms, even offering to prescribe me anti-depressants, suggesting that my symptoms were somehow exacerbated by stress. I started monitoring in a daily journal how I felt from 1-10, what I ate for every meal, etc., trying to find correlation between my feelings and my bodily sensations. This experiment failed because even on the days when I felt good emotionally, I would get bloated, constipated and have severe stomach cramps.
In May of 2011 I started a new job, which came with new health insurance and the day the insurance kicked in, I made an appointment with my chosen primary doctor. I cried in her office, said how my severe symptoms kept being dismissed as IBS and that I needed her to refer me to a specialist. She did so, but even she raised her eyebrows and asked me “what if they, too, say it’s IBS?” “Then, I’ll keep looking for answers”, was my response. I was suffering long enough that I knew that there was something wrong.
Yet, cancer never entered my mind. Aside from my grandmother, who had a cancer of the gallbladder, no one else in my family had cancer and I didn’t know much about it at all. When I would think of cancer and chemotherapy, I would think of a bald person – that’s how ignorant I was!
I met with the specialist, a gastrointestinal doctor, who finally took me seriously and right away ordered a colonoscopy and endoscopy to rule out any serious disease. When I woke up after the colonoscopy, he told me I had some “ulcers” that will need to be surgically removed and to come back for a follow up appointment in a week, at which point he would have the pathology results. I was a little relieved that SOMETHING was discovered, that I had some kind of an answer to my problems. I probed around on the internet a little and searched for ulcers and didn’t see anything about ulcers in the colon, so I was a bit confused, but decided to wait patiently for my follow up appointment. I went to the appointment by myself because I obviously wasn’t expecting to get the news that I was about to get – that I had colon cancer.
The GI doctor explained that he was 99% sure of it at the time of the actual colonoscopy, but he didn’t want to tell me until he had 100% confirmation from the pathology results. He said that the tumor that they had found in my sigmoid colon was almost completely obstructing and that therefore the scope couldn’t move past it to the rest of the colon. He said that he was surprised that I was able to have any bowel movements at all! Even though receiving the cancer diagnosis was a complete shock, in a weird way I was also relieved to hear it because I finally had an answer to my health problems and could now deal with them.
The following morning I met with the colorectal surgeon and he was very thorough at explaining what colon cancer was and what to expect during the surgery. He said he wouldn’t be able to tell me what stage I was or whether I would need chemotherapy until after the surgery when they would have the pathology results. From here on, everything happened very fast. I had a CT scan the very next day, which showed a questionable liver lesion – they couldn’t determine whether it was cancer or not for sure. Three days later, I had my colon resection surgery, which revealed a tumor the size of a peach. When the pathology came back, it showed that 2 of the 14 lymph nodes taken out were cancerous. At this point, I was at least a stage 3B or, if the liver lesion turned out to be cancer, then I was a stage 4.
When I met with my oncologists (I have 2 – one local and one at UCSF that oversees my case), they said that I should start chemotherapy immediately and to have a follow up PET scan after 4 chemo treatments. If the liver lesion has changed in any way by then, it would be cancer and I would be a candidate for a liver resection at some point.
As soon as I was healed from the surgery I started a chemotherapy regimen called FolFox 4. I didn’t want to be on full disability and decided to work part time. Going to work made me feel somewhat normal because I had a place to be and something to do besides just focus on the cancer. After 4 chemo cycles, I had the PET scan as planned and it did in fact show shrinkage of the liver lesion. At this point I met with a liver surgeon who, after looking at all my scans, said he was sure it was a metastasis and that I should have surgery as soon as I was done with the chemo.
So, I was officially stage 4. It was hard to hear this because by now I was well educated in the colon cancer arena and knew the different statistics for different stages. I would tell myself that I am not a statistic, but a person. So, I kept going with my chemo. It was tough and it got tougher as time went on and as the weather got colder because the neuropathy would last longer and longer and I was getting more and more tired. There were less good days in between the chemo treatments and just as I would start to recover, it was time for another treatment. I was supposed to undergo 12 cycles; however I had very bad (and quite scary!) allergic reactions during the 7th and 8th cycles, so both my oncologists agreed that I should stop the chemotherapy then.
At first I was a bit worried about ending it early, but then I read that in Great Britain they only do 6 treatments and not 12, and also that there was currently a study going on to determine whether 6 are just as effective as 12. Also, I have connected to many other people who were undergoing this exact chemotherapy and it seemed that most were able to tolerate about 8 treatments. After 8 treatments, neuropathy would start to become permanent and oncologists would stop the treatments then, or at least oxaliplatin, the drug that caused this and other nasty side effects.
I was given one month break for my body to recover a bit from the chemo and then underwent liver resection surgery in early February 2012 to remove the liver tumor. It was supposed to be a fairly uncomplicated surgery because it was done laparoscopically; however I was suffering from extreme pain in my right arm and shoulder post-surgery. I was in so much pain, I felt like someone was stabbing me in the shoulder and would cry at night, not being able to sleep.
The surgeon thought that it was a “referred” pain from the surgery, because my liver tumor was located near the diaphragm and there were lots of nerves near the diaphragm that affected the right side of the body. This was a logical assumption and I was told to take pain medications and that the pain would go away soon. The pain kept getting worse and worse every day and spread all the way up to my neck and down to my fingers, and even the strongest of the pain medications couldn’t control it. This was the worst time of all throughout my cancer experience, and I became really depressed.
I also could not work at this time due to the pain, so I was home 24/7. Finally, 7 weeks post-surgery, when the pain wasn’t getting any better, the surgeon ordered a CT scan, which showed a huge amount of fluid build-up in my liver. I was immediately sent to an interventional radiologist to have the fluid drained and there were 1.2 liters of fluid inside my liver! It was infected, which required a hospital stay. I had to have a drain tube inserted between my ribs for almost 4 weeks to collect the rest of the fluid that kept coming out. I was extremely weak during this time and experienced withdrawals from all the pain medications I was on. I remember being barely able to walk half a mile and feeling so weak, like I was 100 years old. I was persistent at walking every day and slowly I got stronger. Once the drain was out, it was assumed that I was cancer-free. I still had the port left in me because there was a high chance of a recurrence.
At my first follow-up PET scan, in June 2012, another liver lesion was discovered, so it was a recurrence. I underwent another liver resection surgery in August 2012, this time an open surgery, because the tumor was in a place that was hard to reach and right next to main artery. I then underwent 12 cycles of another chemotherapy regimen, called FolFiri, as “insurance” so that the cancer wouldn’t come back again. I finished all the chemo treatments mid-April 2013.
My first scan post-chemo showed inflammation in the liver near the last surgical site. The liver surgeon said the chances of it being cancer were 50/50 and to have a repeat scan 4 months later. That repeat scan happened just a few days ago, on September 4th. It was CLEAR!!! I was beyond ecstatic and so was my family! Of course, I know that I’m not 100% in the clear until I am 5 years out from my diagnosis. However, having a clear scan gives me hope that I may be able to beat this disease after all. I will just have to make the best of every 6 months because that’s how my scans will be spread out from now on. A good friend of mine said that living that way may have its benefits and if everyone were to live that way, they may take better care of themselves every day and not take anything for granted. That’s what I try to do.
I live each day to the fullest and I am grateful for all I’ve been given and all the wonderful people I have met as since my cancer diagnosis. My cancer experience has taught me what’s really important in life and it has put things into perspective for me. I’ve learned to let go of the control that I’ve felt I always had to have in the past and live each day one day at a time. I can deal with the uncertainty better and still make the best of today. I’ve learned to depend on others on the days when I can’t take care of myself, which was also very hard because I’ve been independent since a very young age.
I’ve learned to not take things or people for granted because you never know when will be the last time you see them. I’ve learned that I should express what I need to say to every person that I have something to say to, or otherwise it’ll weigh on me like rocks. I like to keep my affairs clean and not leave anything unsaid. I’ve especially learned to celebrate each day I feel good physically when nothing hurts or feels uncomfortable! Those are great days!