Writing this post has been on my mind for a while now, though I wanted to wait for the confirmation from the “specialist” that my diagnosis was real and true and 100% certain, and that surgery is really the necessary next step.
But let me rewind a bit. I’ve told you all about my mystery pains for almost two months. I’ve told you (at least on my Facebook page), that my primary care physician, who is an awesome paleo doctor, tried without success to find a diagnosis for this pain. In the process we stumbled on a parasite called blastocystis hominis, which I ended up treating with an antibiotic, because I just wanted to be done with that blasted pain all the time.
After seven days on this medication it became very clear, that whatever it is that caused my abdominal pain, the blasto wasn’t it. As a matter of fact, the pain started becoming more localized to the upper right quadrant of my abdomen. I lacked energy, felt like sleeping a lot, and food usually did not have much of an impact on the severity of my pain. Also, I identified the pain to be more of an ache. My own research came up with nothing. My doctor was puzzled, but when I pointed to where the pain was localized he decided it may be time for an ultrasound.
I cannot even begin to tell you how afraid I was when, just after the ultrasound, a doctor walked into the room to inform me that something was wrong with my liver (my LIVER?). They had found some masses, and they would like to do a CT scan. I believe it is safe to say, that the following hour or so, was by far the worst hour of my life. During this time I was unaware just how large those masses were, whether or not they were cancerous, and what this would mean for me.
The diagnosis, hemangioma of the liver, initially was a great relief. Hemangiomas are actually quite common, and most people live with them without ever knowing they have them. And as long as they are small and asymptomatic, surgery or other treatments are not necessary.
In my case, however, these things are rather large. I have four of them, with the largest one over 11cm in size, and several smaller ones still over 5cm in size. According to my own internet research, the big ones are called giant hemangiomas. Sadly, mine cause symptoms, and one of them pushes on a kidney. Not good. My dear doctor referred me to a gastroenterologist, who basically confirmed with much certainty, that a case like mine makes surgery an unfortunate necessity.
Surgery to remove hemangiomas like mine, includes resection of the liver. This means, part of my liver will be cut off. This makes this surgery big and scary, and it means about a week of hospital time and a recovery time of about 6 or so weeks. Plus, no CrossFit for several months. With the internet at my fingertips, I couldn’t help myself and read up on everything that I should expect. I find it difficult to simply sit and wait and twiddle my thumbs, although this is exactly what some people have recommended.
I have read stories from people who had to go through this surgery, and some of them are not pretty. And so you might argue, that this knowledge may ultimately do more damage to my psyche and wellbeing. But, I beg to differ. While initially the idea of being hooked up to IVs and drains and other scary things are by no means appealing, the fact remains that these people lived to tell their story, and that, unfortunate as these episodes may be, they too shall pass.
The truth is, that yes, I have been on an emotional rollercoaster with this lumpy liver of mine. I go from great confidence and optimism to deep fear several times a day. I have cried my eyes out, and I have laughed at my referring to my liver as lumpy. I considered not telling anyone about this on the internet, but then reconsidered. Sharing my story has been the right thing to do. Because of it, I have not only had an amazing outpoor of friendship and support, of good wishes, virtual hugs, and prayers… I have also learned that a lovely lady from my CrossFit box is a gastroenterologist. She has helped me through this with advice, positive words, recommendations, and the constant message, that I will be fine.
My family, both on my husband’s side and my own live far away. His in Arizona, mine in Europe. But my very close friends B and B… (is it funny, that their names start with a B?) have stepped up to the plate, offered their help, joined me at my doctor’s visit, and will see me through all of it. Each in their own way, they have given me everything I would need from a friend or family member. Again, other friends have reached out and asked me to let them know if there is anything I need. It’s a tribe, one that I am incredibly lucky to be part of.
I have yet to meet the surgeon, who I’m told is an amazing surgeon and awesome woman. I am grateful to know that she has experience with lumpy livers. I am still immensely scared of surgery. I would rather not have anyone slice open my gut and cut around my liver. How creepy is that?? But, thanks to all of the people that I have in my life, and also thanks to my own health and strength, I will take this hurdle and then move on.
I will prepare for this surgery by taking certain supplements that were recommended to me. I have not had an alcoholic beverage in over a month, and I shall keep it that way, and I will eat well. Bone broth is my friend. 😉 Self-hypnosis is, too.
And then, when all of this is over, I shall pay it forward. I shall give back to the community that has come together like this, so I can keep the good energies flowing.