The investigation

***This is a long boring post, it was more meant for me to keep a timeline of the process that lead to the diagnosis***

After our fabulous trip to Jamaica I started feeling increasingly fatigued. I had been bothered by some abdominal cramping, tons of rumbling, and slight changes in my stool. My symptoms were starting to increase and I did what I usually do, I went on “Dr. Google” to try and figure out what was going on. From my symptoms, I thought I would have something like gluten intolerance or a bacteria overgrowth in the small intestine that would go away with taking probiotics. Annette, an amazing nurse practitioner at work and good friend of mine encouraged me to go and get my levels checked to make sure sure that it wasn’t any vitamin deficiency or thyroid issues. Since I never get sick, I had not seen my primary care physician (PCP) in two years and made an appointment with her.

I saw my PCP on 7/22/13 and my initial set of labs came back all perfect except for a slight elevation in my liver enzymes. When I say slight elevation, I mean a few points higher than normal nothing that felt alarming as liver enzymes can go up for many different reasons. Don’t ask me what prompted my doctor to send me for an ultrasound, truthfully I thought it was “overkill”, my symptoms were not that bad… So off I went and got the ultrasound. I remember vividly the tech sizing a spot on my liver just like I had seen the ultrasound tech at the breast center size the cysts I often have. It didn’t even cross my mind then that it could have been something significant and I did not make anything of it whatsoever, I even forgot about it after I left.

I  got a phone call from my doctor on 7/29/13 telling me that they had found “sludge in my gallbladder” which was not a big deal but they had seen a spot on my liver and were scheduling a MRI to get a better look at what it was. She was quite reassuring on the phone, telling me that it could be many different things and not to worry. So a few days later I was back to the clinic getting the MRI with contrast, it wasn’t comfortable but I was more afraid of falling asleep and “twitching” and having to redo the test but everything went fine. That was on Thursday 08/01/13. We spent that weekend with friends at Ron Jon’s and despite the not so good weather we enjoyed spending time at the beach and eating good food – which at that point, I was trying to be gluten free to see if it helped in any way. I had shared the initial results with my friends but at that point we thought it could still be issues with the gallbladder or gluten intolerance so we just focused on that. The following Monday (8/05/13) I was on my way to Ikea in Orlando with my interior designer (and now friend) Ann. I received a call quite early from my doctor’s office saying that the doctor wanted to see me that day or the following day – I had a hunch that something was wrong because I felt an urgency to be seen but I tried not to let it bother me. We had fun shopping in Orlando, hit some of my favorite stores and enjoyed a gluten free lunch at PF Chang before I picked up the boys from camp. I went to see my doctor the following day, feeling a little nervous. All I remember her saying right as she sat down in front of me was “there is no way to sugar coat this but the results from the MRI are compatible with metastatic disease, I just needed to get it out and now we can focus on what we need to do next” – silence followed. I immediately got onto planning mode and asked her what I needed to do: 1) liver biopsy, 2) find GI doctor, and 3) get chest xray. I grabbed a few tissues on my way out and as soon as I got in my car sobbed and sobbed. I picked up the phone three times to call Fred but then decided to wait for him to come home. He knew something was wrong when I wanted the kids to be in bed before I talked to him, I knew I was going to cry and didn’t want to worry the kids. When I finally blurted out the news, he too tried to be reassuring and focus on “what else” it could be and not jump to conclusions right away.

As I could not be seen for a week for the biopsy I call my “contacts”. One of the doctor’s I used to rent space from works with the interventional radiologists who perform those procedures and he was able to get me in quicker (with the best one – in my opinion anyway!). When this friend doctor talked to his brother who is a surgeon (who I consider a friend and now guardian angel), his brother called me right away. He invited me to come and see him so we could look at the films together and he could provide his insight. So I did. In hindsight, I don’t know if he regretted not taking a look at the images before I got there – the images were quite striking, my liver looked like it had the chicken pox – it was full of spots. I remember looking at him straight in the eyes with tears in mine and asking him if this was a “death sentence”, I can’t even remember what his answer was but of course he tried to come up with “what else” it could be but only the biopsy would be able to really tell us. I also remember looking at the screen and telling him “look my name is not on the images, maybe these are not mine” – this actually happened to my late grandmother, who was told she had lung cancer. She then stopped smoking right away and found out later that they had the wrong xrays and that she was fine, she never went back to smoking! So I thought it was worth asking if they knew for sure if these were my images…

That same day, Friday 8/9/13, I had 2 more appointments. I next met with the interventional radiologist who was truly one of the sweetest and caring doctor I have ever met. He trained in Boston so he had my seal of approval even before I met him, I felt like we belonged to the same club. He was very upbeat trying to reassure me that maybe it could be something else as I was “young” and otherwise healthy. I was so amazed when he even re-arranged his schedule to accommodate me. There was not going to be a good timing for this biopsy but registration at school was on Monday and the kids started school on Wednesday, I really wanted to be up and running on those two days and so he said “then let’s do it Tuesday” and hugged me as he left. Then I was off to see the GI doctor. I’ll probably have to write an entire entry about that office let me tell you but I don’t want to get into it just now! My number 1 choice for GI was going on vacation so he didn’t want to take me. I went with the number 2 on my list who I was told had great skills but no bedside manners. If I had to choose between the 2 of course I would go with skills. I ended up seeing him at 5pm on a Friday afternoon. The visit was short and just like everybody else, he could not say anything until we had the biopsy results. He told me he would be the one to get the results and we made a “deal” that if there was nothing wrong he would give me the results by phone but if there was anything significant, he would have “my spouse” and I come in. I thought it kind of sucked that he would be the one giving me the results when he was the one I had the least connection with but at that point I just wanted to know, the faster the better… I was scheduled for the biopsy the following Tuesday (8/13/13) and was told I could get the results on the Thursday the 15th…

Here’s a little note to myself: how can all these doctors just tell me to “go and enjoy the weekend” when I might have a metastatic cancer of an unknown origin? Really??? Did they really think someone can box up this gloomy possibility? I am not sure what I would have liked to hear but maybe there should be a chapter in my book for doctors on how to talk to patients, what to say and what not to say… and how to help with the anxiety of waiting for test results…

 

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One thought on “The investigation

  1. Oh, I love that you are already labeling this as a book. It should be and will be. I get shivers reading it even though I went through a lot of it with you. I wish you could change the devastating news you were given on your drive to pick up your kids!!!!… yes maybe they were not your films. anything

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