In some ways I can’t believe it’s been 2 years already and in others it seems like a lot longer than that. I thought I’d recap my journey for you. I’m going to use dates for the most part.
April 10, 2014 – went to PCP, Dr. Singh for annual checkup. Had blood work done the previous week. He told me that my liver enzymes were high. It could be nothing or something could be going on. So a week later I had the blood work done again and liver enzymes were still high.
April 23, 2014 – Less than a week later he sent me for an ultra sound. He called me that night and he said again, it could be nothing, but you need to see an oncologist to have a biopsy done. Before that, you need to have a CT scan.
April 30, 2014 – I had a CT scan. Dr. Singh called me that night and asked how my stomach was. I said it was fine, because it was. He said his office would make an appointment to see an oncologist. He said something like, this looks very serious.
When I didn’t hear from his office by a reasonable time the next day, I called them. They told me there was an appointment for May 19th!!!! But if you call them, they might have a cancellation. So I called the oncologist office and got an appointment for the next day. If it was cancer, it was no time to mess around. Needed to get going on treatment!
May 2, 2014 – Ray and I met with Dr. Pazooki of Medical Oncology and Blood Disorders, affliated with St. Francis Hospital. He discussed some background information with me and then told us that the CT scan not only showed a large mass, approximately 6 inches, but also showed some nodules on the lower portion of my lungs. I had CANCER. And no, it couldn’t be anything else. They didn’t know what kind of cancer at that point. He suspected lung cancer. But the biopsy would tell us. I kept myself together until we had to go to the front desk and make appointments for biopsy, etc. and then the floodgates opened and I couldn’t help myself. I just kept sobbing and sobbing. Finally all that was resolved with a biopsy scheduled for May 8th along with a chest scan to get a better picture of my lungs. Ray and I were in a daze. We got to our car and just hugged and cried and cried and hugged. To this day, Ray does not remember the drive home from there. Of course, I don’t remember much of anything! Thank goodness I started a journal!
So, now it was time to tell the kids and the family. Ray made several phone calls. Before we knew it, Jay and Heather were here, Shar & Bill and Aunt Wilma. It was a Friday night. We usually went to the Marco for dinner and drinks. We ordered pizza. We talked and cried and laughed and hugged. We had drinks and I smoked! The next day I had my last cigarette and haven’t had one since. So I”m celebrating my 2 years of not smoking too!
May 8, 2014 – Went to St. Francis for the biopsy and CT scan of chest. All went well. When having a biopsy you’re in a twilight state. I could hear things, but not feel anything. I had an angel of a nurse holding my hand the entire time though.
May 14, 2014 – We were not supposed to find out the results of the biopsy until May 19th. I finally put in a call to the doctor and spoke to him. I wanted to know the results and what kind of cancer I had. He said to me , you want me to tell you over the phone? And I said yes. That was the first time I heard the words Bile Duct Cancer. No one had ever heard of. At first we thought, oh good, that doesn’t sound too bad. And then, we started doing our research and we were heartbroken once again!!! Survival rate for stage 4 is like 2%. It’s the type of cancer that isn’t found until later stages because a lot of times there are no symptoms–like me.
May 19, 2014 – By the time we went to meet with Dr. Pazooki, that’s Ray, me, Jason and Julie, our minds were pretty much made up that we were going to try to get an appointment at Mass General.
As luck would have it, my brother Jimmy knows a guy, Darrell, that is the Co-Director of the Research Center at Mass General, Jim had already called him and we had a conference call scheduled with him for that evening.
May 19, 2014 – We had our conference call with Darrell and what an amazing experience that was. Darrell was a wealth of information and we had heard of genome testing, but Darrell gave us a lot of information and that there were trials for it. Darrell also knows Dr. Andrew Zhu, who is the Director of Research of the Gastrointestinal Cancer Center at Mass General. He said he would reach out to him to get us an appointment.
May 20, 2014 – I got a call from Dr. Zhu’s office! We spoke to Darrell at 8 pm and later on the previous night. This was amazing to get a call so quick. They wondered if I was available to come up to Mass General on Friday.
May 21, 2014 – Got another call from Dr. Zhu’s office. Could I come up on Thursday???? This was just great news.
May 22, 2014 – Ray, Julie and I were off to Mass General to meet the world renowned Dr. Zhu. And the beginning of an education we never expected to have in our lifetime. What a great meeting. We had sent all my medical records and scans to him and he had reviewed them. He told us that I needed to start with the standard gemcidibine and cisplatin chemotherapy. He was concerned that I hadn’t had a treatment yet, so he scheduled my first chemotherapy infusion for the next day. He also talked about things that would be available in a year and five years that were very promising. This is what we wanted to hear.
May 23, 2014 – Ray, Julie and I were back at Mass General for a 10 am chemo treatment. We had our own room. They had to measure my urine output so I had to pee in a bowl, that was interesting!!! My body does not take well to needles, so I ended up with a large bruise where the needle went. They give you a lot of saline before and after the chemo drug and administer the chemo drug separately. The second drug burned my skin so they had to give me a warm compress that helped instantly. After a few hours I had my first chemo.
May 30, 2014 – We returned to Mass General and met with Dr. Zhu. He said I could have the same treatment closer to home instead of traveling to Boston. We said that was great but we didn’t have an oncologist. He asked how close we were to Hartford Hospital. He ended up recommending Dr. Timothy Hong, who happens to be the brother of the Doctor who heads up the radiation department at Mass General. Dr. Zhu also did his residency with Dr. Hong at Yale.
So I had my second infusion with no problems, except the bruising and arrangements were made to meet with Dr. Hong and begin my chemo treatments in Hartford. That was my last chemo treatment at Mass General.
June, 2014 – So I began my treatments at Helen & Harry Gray Cancer Center with Dr. Hong and a wonderful nurse named Katie. There were other nice nurses there, but Katie was just wonderful. My treatments were once a week for 3 weeks and the 4th week off. And the commute to Hartford was much easier than the commute to Boston.
August 7, 2014 – My first scan since being diagnosed. I was stable. With several nodules in my lungs and one large tumor and one small tumor in my liver. No blockage of bile ducts.
October 28, 2014 – Second scan. Large liver tumor got slightly smaller. Other lesions in liver slightly larger. Lung nodules stable.
October, 2014 – I started having issues with my hearing, i.e., ringing in my ears, not being able to hear well in a crowd, etc. I went to an Ear, Nose, Throat Doctor and found that I have high frequency hearing loss — this is from the cisplatin. The cisplatin was reduced in my treatment at that time.
February 13, 2015 – Third scan. Combination of increase and decrease of size in tumors/nodules in liver and lungs.
At this point in time, Dr. Hong told us I could take a break, continue with the current treatment or look into clinical trials. It was time to give Dr. Zhu a call.
March 18, 2015 – Had an appointment with Dr. Zhu at Mass General. We discussed a possible trial for me. To be accepted in the trial I would have a physical, eye exam, EKG, MUGA test and blood work. If that was okay, I would be accepted. I also needed to be off chemo for 4 weeks and it would take about 6 weeks to start the trial.
March 20, 2015 – Had my last chemo infusion at Helen & Harry Gray Center. Just had gemcidibine because Dr. Zhu didn’t want me to have any more cisplatin.
March 30, 2015 – Ray, Julie and I were off to Mass General (MGH) again. I also needed a biopsy for the trial. When I initially came out of the anesthesia, I felt nauseous and was unable to be sick. They rolled me back to recovery and I did get sick there. I had pains in my stomach that continued for a while. I needed to go to the bathroom. Once I was able to do that, I felt better. I should have asked for Ray and Julie to come in earlier, but I wasn’t thinking straight. I told them what was going on when they did join me. Anyhow, they let me leave after an hour or two. Ray asked for a wheelchair and good thing, because I was wiped out and the car was far away from where we were.
March 31, 2015 Felt fine. Even went to the eye doctor because I had what I thought was a broken blood vessel in my eye. It was a cyst that burst. I looked like my eye was bleeding!
During the night, which was actual April 1st, I woke up with a severe pain in my back. It lasted for a few minutes and then was gone. I got up to go to the bathroom and noticed my urine was a dark yellow, but thought it could be from the biopsy and I went back to sleep.
April 1, 2015 – Had an okay day. After lunch I vomited. Then my stomach was just queasy. Finally around 7 I told Ray I could eat dinner, I felt better. We ate and no sooner finished and I felt sick again. The pain was worse. It was in my back and traveled to the front, like a vice. I got sick and this time I threw up blood!!! Talk about being scared! Holy crap! What the hell was going on. Ray called Mass General and they told him to bring me to the emergency room. I think he called Dr. Hong, our Hartford Hospital doctor, too. We went to the emergency room – Ray, Julie and me. I was fine for several hours. After EKGs, IVs, my history, etc. I was finally put in a room in the step down ICU at 6 am. Poor Ray and Julie were exhausted.
April 2, 2015 – At some point a gastrointronologist came in and asked me what had happened over the past few days. He pretty much immediately said, I know what happened. During your biopsy there was a blood drip and it went into your bile duct, that’s why you’re jaundice and throwing up blood. They scheduled an ERCP for later that morning. The ERCP confirmed his diagnosis.
The same day I was moved to another floor and basically they were monitoring me waiting for the blood to pass through my system and for the pain to go away. Over a couple of days I had a couple of episodes of pain and vomiting or bowel movements with blood in them. Finally Sunday night (went in on Wednesday), Easter Sunday, I had a bowel movement without pain or blood. I was in the clear and ready to go home.
April 6, 2015 – Monday morning and I was more than ready to get out of there. I hadn’t had a shower in days (shower was not working) and I just wanted to be home. An intern came in and said I was scheduled for another ERCP on Tuesday. I said, I don’t need to stay here for that. I’ll have the test, but I’m going home.
April 10, 2015 – Met with Dr. Hong and had blood drawn to see where my bilirubin levels were.
April 13, 2015 – Showed up for the ERCP and was changing into hospital gown, etc. and the gastrointronologist showed up and said he just looked at my blood tests and things were on the way back to normal and I didn’t need the procedure!!! YEAH! Ray and I were out of there very quickly. We did stop in and see some of my Hartford Anesthesiology friends as their office was right next door to where I was. Thankfully, that experience ended on a positive note.
April 23, 2015 – Went to MGH and signed the paperwork to participate in the BGJ398 trial. Had blood work, a CT scan, and EKG that day.
April 28, 2015 – Back in Boston. Had blood work again, and a MUGA test, this tests the flow of blood in and out of my heart. They took some blood and mixed it with radioactive material and put in back in my system. I had an eye test.
All testing was done for the trial and I was a candidate and scheduled to start the trial on May 7, 2015. Just about a year after we found out I had cancer.
I’m going to post this now because it’s a lot of information and I’ll work on year two over the next several days and hope it doesn’t take me too long to post it!
Thank you all for your love, support and prayers. You are my strength. Bea Strong
