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July 2017 Health Update

July 2017 Health UpdateHi There! 

It has now been 7 full days since I received the results of my liver biopsy. The past seven days have been hard. Some more difficult than others. I want to first, tell you the results of my biopsy and then chronicle my feelings each day after I received my results leading up to today. I feel that it is important that I share every emotion that I have encountered during the past 7 days because being sad is okay and being scared is okay and there has never been courage without fear. So, here it is...

On Thursday June 29th my Doctor's assistant called me and asked if I was available to come in for a follow-up appointment with my care team on July 20th. I was free and let her know that I would be there. I also insisted she ask my doctor to call me with results as it had been causing me a lot of anxiety and I just wanted some answers. On Friday, June 30th my Doctor called. Her tone when I answered the phone and she greeted me told me right away that she did NOT want to make that call. Looking back, I wish I had waited until my appointment to hear the results as well but it's too late now. 

My doctor explained that going into the procedure, she expected the results to be good. She expected there to be light scarring and no major problems. Unfortunately, my results were nothing short of worst case scenario. The biopsy showed that my liver is entirely scarred. The scarring has completely changed the formation of my liver and all of the veins and arteries that lead to my liver are enlarged due to the back up and congestion. I asked her if we replaced the pulmonary valve, and increased the flow, could the liver regenerate itself and heal? She replied that the liver is so scarred it may not be able to regenerate on its own. She told me sternly that we do not have time to wait and we need to start some form of treatment immediately, this summer. At this point I asked her, "Is this life or death?" (My way of saying - am I going to die???) She replied after a long pause... "It's more like, life or transplant." Transplant meaning a full liver and heart replacement. 

Geez... Just typing that brought tears to my eyes. 

The hardest thing about the call for me was the tone. It wasn't optimistic like the calls I was used to. It wasn't "Don't worry, we'll figure this out and get you healthy again!" It was... "When you come in on the 20th, we'll lay out all of your options and discuss a plan of action." Then she gave me her number and said if I had any more questions, I could call or text her over the weekend. I hung up the phone and my entire life flashed before my eyes. HOW IS THIS HAPPENING? I look and FEEL so healthy, how could I have a failing liver and heart? 

When I got the call from my doctor, I was with my friend Katie while she was getting a tattoo. On Friday we were celebrating her "Cancerversary" it was supposed to be a day for HER and I didn't want to ruin it. I knew she would have understood because she is a phenomenal human being, but I chose to suck it up, put a smile on my face and support her instead. When we left the tattoo shop, we got in the car and I burst into tears. I let her know what had happened and she grabbed my hand and talked me through it. She seemed to say all of the right things for a best friend to say and I felt a lot of comfort telling her. 

When I got home, it was time to tell my husband, Mikey. He held me and comforted me and told me WE would get through it. Friday was hard, but I'm not sure the severity of what I was told had really set in yet. 

Saturday (July 1st 2017): With only 3 hours of sleep, we had to wake up at 3:00am to head to the airport for our trip to Atlanta (We went to the Peachtree Road Race expo to sell headbands). Saturday was not a good day. I typically have anxiety at airports and Saturday was no different. That, combined with the fact that I had convinced myself I was dying made for a very tough time. I didn't talk much. I silently cried during the flight. I'm sure I was a complete JOY to my husband! We got to our hotel, ate and went to bed. 

Sunday (July 2nd 2017): I knew I needed to get a workout in before the expo to clear my head so I woke up early enough to utilize the amazing gym at our hotel. There is this thing about working out for me, it clears my head. Throughout the day, I constantly have thoughts running through my head and sometimes it feels like I can't shut my brain off, but during a workout, I find clarity. I concentrate on the task at hand and for that short amount of time, I think of nothing. Maybe that is why I enjoy working out so much. Sunday was a little better. We got to the expo and went straight to work. For the next 9 hours, I was working. I was distracted. It was freedom from all of the negative thoughts that I was having the day before. We got out of the expo, went to dinner and back to our hotel to sleep. 

Monday (July 3rd 2017): I woke up and went to the gym again. It helped to clear my mind to finish out the expo but the second we got into our Lyft to headed to the airport, my fear came back to haunt me. I continued to convince myself I was dying and on the flight back to San Diego, I looked in the mirror in the airplane bathroom and cried. I thought to myself... "In no time, I could be gone. Unable to hug my husband, unable to laugh, unable to see my family. I could simply just stop existing." I've never had these feelings before. I have never so seriously faced my own mortality. Monday was the day that everything truly set in. 

Tuesday (July 4th 2017): I thought a hike with friends might help my mood so I met up with Katie and Megan and we hiked around a lake down the road from my house. I found myself trying so hard to be the "Cristi" that everyone knew and expected me to be. However, I struggled to be the outgoing, positive person that I had been. It was like I couldn't even fake it. The remainder of the day I went to two BBQ's and had the same internal struggle. I wanted to be "myself" but my emotions were holding me back. 

Wednesday (July 5th 2017): Back to work! More time to sit in my thoughts. Time to explain to my coworkers what was going on. It was another sad one. Halfway through the day I realized this wasn't good and I needed to find someone to help me cope. I reached out to my insurance and got a list of Therapists that specialize in Chronic Illness. I called around and found one that had an opening the next day so I arranged my schedule to make it work and anxiously awaited my appointment. 

Thursday (July 6th 2017): FINALLY I was going to talk to someone! I woke up feeling sad and disappointed in myself. I had been so strong through every previous struggle - Fertility, my keloid procedures, adoption etc. but this time, I felt weak. I was mad that I wasn't feeling strong because I genuinely wanted to be! I met with the therapist at 10am and it was AWESOME. He offered me so much insight that I had struggled to see on my own. One of the greatest things that he said which has resonated so strongly with me ever since is "Strength is a behavior, not a feeling." The past 6 days, I had FELT weak but my actions were that of strength. I was getting up and continuing to live my life. I wasn't shutting down, crying in bed and pitying myself. I was still living and THAT is strength. We also worked on self-compassion exercises. I had been telling myself that I was going to die. I had set a year clock on my life and was counting down. These negative thoughts were not healthy. We worked together to discuss what I would tell my best friend if she were going through this same situation. I would NEVER tell her she was going to DIE. I would tell her that we're going to get through this. This is just one more thing I will have overcome. I would tell her that she's not alone and she will never be alone throughout this process and I would tell her she is loved. I would say that seeing the therapist was extremely helpful. I see him again on Tuesday and I already can't wait. The rest of Thursday was much better after my appointment. I felt a lot more at ease and I felt strong again. 

Today (Friday July 7th 2017): At my therapy appointment, I told him that I shared my life on-line but that I had hesitated to share this. He actually encouraged me to share which surprised me. However, he encouraged me to share EVERY emotion and not just the smiles. He told me to share when I was sad, when I was mad AND when I was happy.

I am a positive person. One of the main reasons I am so afraid of having a double transplant is because I am scared that my life will change and I LOVE MY LIFE. I am genuinely happy with where my life is right now and I don't want that to change. I also don't want to leave my family and friends. I feel like I have so much more left to do on this earth and I am not ready to go yet. I can't say with certainty that I am ready to deal with what my future holds, but I know that I am going to do what I have to do to stay here to see it. Until then, I am going to make the most of every single day. I want to do one thing every single day that if that were my last day, I would be happy and proud and I will have left my mark. 

So, here it goes! The next 14 days leading up to my appointment is going to be filled with some sadness, anger, frustration, speculation and anxiety but I between those emotions, I am going to work hard to add joy, laughter, gratitude, hope and inspiration.