Hello. My story. Humm… Where to start… It’s a long one, so I appreciate you all taking the time to read it! How about we start about August 2009. Though in hindsight, I think there were signs before this time. Between August and October of 2009 I was having a lot of symptoms that I wrote off as being a normal stressed out, over worked 30 year old. I was very tired all of the time, I would go to work and come home and sleep or lay around, no matter how much I wanted to do something, I just had no interest. Then I started having a hard time eating, it seemed as though I’d get hungry but once I made something, I wouldn’t want it. I began not being able to even drink coffee, which I adore. It’s like I was so hungry but my body didn’t want me to eat it. I also started becoming very nauseous and even throwing up from time to time, out of the blue. I was never one to vomit; ever so this was quite odd. Also, I had severe headaches and random fevers off and on and what I described as heart burn and a full feeling for a year prior to all of this.
I did not have insurance or a primary doctor, so I went to the walk in clinic on several occasions and was diagnosed with everything from gluten intolerance to having ulcers. As I lost weight and got no relief from my symptoms I again returned to the walk in clinic. This time I saw a doctor who pressed on my stomach, then my liver. I hit the roof with severe pain… he said my liver was inflamed and needed to be tested for hepatitis. Blood work came back fine, except elevated liver enzymes, which really didn’t answer anything. The pain grew from that day until I could not tolerate it anymore, up my shoulder and into my back. I was weak, pale and exhausted. I found my way to the emergency room in which the doctor said I was most likely having a gallbladder issue. Since I live in a small town in NH, if its past 8pm they can’t do ultrasounds. I was sent home until morning. I returned for an ultra sound which showed that my gall bladder was in excellent shape but I had a lesion on my liver. I was told not to worry about it, but see a doctor at some point for a follow-up.I had found a doctor I was going to stick with by this time and saw her within days. She read the ultra sound report and immediately referred me to a gastroenterologist. This place was in Maine and they wanted me to wait 2 months for my appointment. Defeated, I went home and rode out the pain and exhaustion.
On November 3, I got a high fever and called my doctor; she told me to go to the ER immediately and she would call and tell them I was coming and they needed to help me. To this day I am so thankful for her. I had a CT scan which showed a huge mass on my liver. My local hospital called in a surgeon who opted to not take my case and suggested I be moved to Maine Medical center. I was transported there in the morning. They kept me a week and did a bunch of tests and a biopsy. This biopsy was inconclusive as they often are. A wonderful medical team was assembled for me in the oncology department along with a liver surgeon named Lisa Rutstein. She is BRILLIANT. On November 16, 2009 I had a liver resection which removed a 10cm tumor along with 50 percent of my liver and gallbladder. I was in the hospital for 10 days. During this time they tested the tumor for cancer. I was diagnosed with fibrolamellar on November 20, 2009 at the age of 31. I went home to recover, which anyone who has had a resection, knows is a long road. I was told there were no signs of metastasis. So, I was set up to have a scan 3 months post-surgery. My first scan was good, but I needed a drain placed at the surgery site due to infected fluid that had collected. This was an unpleasant and painful process but I was glad the tumor had not returned. In June of 2010 during a scan, my doctor found a lesion on my upper left lung. Due to my history of cancer, I was assigned a wonderful lung surgeon named Seth Blank, in Maine. I had a wedge resection on my lung in which they took out and tested the lesion. It tested positive for FHC. It was devastating. I recovered well and went home. In October of 2010 they discovered the same thing on my lower right lung. Again I had it removed. Then in January of 2011 they noticed a 3rd tumor growing. I had a referral to Dana Farber in Boston, Mass. I saw a wonderful lady who agreed that the best option was to go for a 3rd wedge resection. This was the second one for my left lung. The recovery was a bit harder as I had just had surgery 9 weeks prior. Thankfully my lung surgeries have been done with a scope.
Since January 2011 I have had 2 CT scans and they have come back clear. This is the first break I have had since 2009 and am very happy for it. Let me mention that since the initial surgery on my liver it itself has remained tumor free. I will continue to go every three months to Maine Center for Cancer Medicine and see my oncologist, have CT scans and blood work. Due to the fact that my tumors thus far have grown singly and in an isolated fashion, my team has recommended that I not have any treatments other than the surgeries at this time. Just close monitoring. I agree, and have added into my life a much healthier diet and a therapist to help with the depression and anxiety that comes along with learning to live with cancer.
I live in New Hampshire and share my life with my wonderful wife Kelly. We have spent the past 9 years together and she is my rock. She has been by my side on this roller coaster of emotions and has willingly assumed many roles over the past year and a half for every surgery, every recovery and every achievement along the way. She has been there. I don’t think I would be here today without her. I am thankful for that, as well as my best friends and 2 god children. I would also like to add that I had never spoken to or met anyone with this type of cancer.
May 21, 2012 (Update)
Just thought this may be a good time to update this doc a little. I have now had a year and a quarter of clear scans. This month my oncologist has decided its ok to switch to 6 month scans. I am still having problems with being tired, but otherwise feel well, So I am cautiously optimistic. As of this weekend, I am proud to say that I have now met and spoken with many other loving people touched by and fighting FHC.
May 15, 2013 (Update)
Seems it has been almost a year since my last update. First I will say, a lot can happen in one year. I did have a year and a quarter of clear scans and was switched to six month scans. However, I did not get to the six month mark before having trouble. I was having some pain in my side, lower than I had ever felt. It was a dull ache and became more pronounced as time went on. I was very tired. Also nauseous. I saw my doctor who ordered a CT scan as a precaution. After about a week I learned that I had a tumor on my right adrenal gland. There had been a small spot there in the past but it was stable so they weren’t comfortable saying it was a tumor. So after comparing the two scans it showed that it had grown. I met with my liver surgeon Dr. Rutstein and she and my Oncologist (and I) decided it best to go in and remove the adrenal gland and tumor. I had this done on September 19, 2012. The doctor had to go back in through the incision from my original liver resection in 2009. She was able to use the same scar and only needed to extend it a bit. The surgery was very successful. I had about a 5 day stay in the hospital due to the size of incision and a fever. Recovery at home went smoothly, It seemed I bounced back quite quickly.
I had a 3 month follow up scan December 21, 2012. This time the news was pretty rough. They found two tumors on my liver and two in my Right lung. It was devastating. This being the first recurrence on my liver and second in my right lung. Also this was the first time I had multiple tumors in multiple places. I am going to fast forward through the mundane meetings with surgeons and specialists and just tell you the outcome. When all of that was said and done we developed a plan to go in and do Bland Embolization and Radio Frequency Ablation on my two liver tumors. Once those were taken care of my new lung surgeon , Dr. Tracey Weigal would then take care of my lung tumors. On March 7th and 8th , 2013 I had the tumors done. I was able to leave the hospital after two days but had to return due to uncontrollable pain and low grade fever. I met with a palliative care team member for the first time during this stay. She was amazing. Got my pain under control within several hours. A scan showed that one of the tumors they treated had ruptured and the fluid had built up under my diaphragm causing the pain. I went home in 3 days and recovered quickly.
In April I had my 4th lung surgery. First I was taken in to have the two tumors “tattooed” with ink so that the surgeon could see them better during surgery. (one was very small) I was taken to surgery an hour later. I had ¾ of my right upper lobe removed. The reason for this was because the ink they use to “tattoo” the tumors infiltrated my lung and caused it to all turn blue. This made her unable to see the exact location of both tumors. She opted to remove as much as the lobe as possible without affecting my breathing. Pathology showed that she did get the larger of the two tumors but the small one remains. I was out of the hospital the next day.
I returned home and am recovering well. During this time, I also connected with some important people about sharing tissue from my past surgeries as well as banking the newest tissues I have removed. Being able to help with research for a cure has been very important to me. Scans now show that the tumors on my liver are completely dead and there has been no re growth. My lung shows no change in the size of tumor. I spoke to Oncologist and surgeons and expressed a desire to have some down time as it seems I am in a stable place. They all agreed that it would be safe to take the summer off and resume scans in August. As long as I’m feeling well. At that time, we will look into taking care of the remaining tumor and evaluate the rest of my situation.
During this last year I have kept in contact with my peers who have fibrolamellar as well as leaning on them for support during the dark times and celebrating the good times.
As of now, I am looking forward to enjoying the summer, going on vacation with Kelly and celebrating our 11th anniversary. I am also looking forward to rebuilding my strength and energy.
Sadly, Amanda passed away April 2015.