LIGHT IN THE DARKNESS December 1, 2021 Health, NETs
As most of you know, I have been going through the liver transplant process and seeking a live donor. It’s been a year and a half in the making which included treatment, lots of screening tests, scans and appointments. The whole process was a roller coaster of emotions especially when we were dealing with insurance issues. So when I was finally approved and insurance approval came through, we were overjoyed! We put a lot of effort into spreading the word to find a liver donor and we had an overwhelmingly positive response. I want to sincerely thank everyone who shared my story and submitted a form. A couple weeks ago I was preparing for my bridge treatment (liver embolization) and an MRI was required. The MRI showed some spots on my bones that appeared to be bone mets. My doctor ordered a PET scan to see what was going on. The news was heart shattering. It in fact has metastasized to my bones in several places. My MRI in July showed nothing and for 3 years it never spread past my liver. Unfortunately, if you have tumors outside of your liver you are not a candidate for a transplant. Poof, just like that I was removed from the donor list along with my hope for a fresh start. It’s been a lot and I’ve had a range of emotions. First, extreme sadness that I am no longer an a liver transplant candidate and accepting my new health situation. Then, I became so angry which I haven’t felt since I was first diagnosed 3 years ago. I still don’t think I’ll ever understand why some people in life suffer more than others. I kept praying, Why God, haven’t I been through enough, can I just catch a break! The scariest emotion was that I felt hopeless and hope is so important when dealing with cancer. Without hope you have nothing. Just when I was feeling the lowest some friends came over and put paper lanterns surrounding my house bringing me light in the darkness. Light and hope is stronger than darkness and will always win if you let it. Sometimes you just need to see a ray of sunshine peaking through the clouds to lift you up and bring you hope. I’m feeling much better and calmer now that I have sat with this for a few weeks and have a new plan. I am sharing my vulnerable emotions with you so that if there is someone else going through a hard time, you know that you are not alone. I am getting a port this week and on December 13th I am starting chemotherapy. I am definitely nervous and scared of the unknown and the potentiall side effects from treatment. The plan is to get a treatment every other week for two months and then get another scan. The hope is for either shrinkage or stability and no further progression. You are probably wondering why I didn’t just do chemo from the start and the answer is not simple. NETs is VERY complex and to date there are no curative treatments (besides surgery). Each person with NETs is completely different and you have to factor in several things such as KI-67, location, size and quantity of tumors, if you tumors have receptors, if they secrete a hormone. With NETs if you are stable you typically don’t do any treatments. People with NETs can live for decades with it. Treatments are about the long game and using them when you need them. Please pray for me during this time for peace and that the chemotherapy is working and killing the cancer cells. Again, I want to thank everyone who put forth effort on my behalf in search of a living donor. It means the world to me and I’ll never forget how everyone banded together to help me.
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