I feel like it has been so long since my last post and I have no idea where to begin!

My last check up was in the fall of 2021 and I did go into the hospital with the mask and all that. I was not worried though because the place was very empty and everyone was keeping to themselves. My appointment went very well. All scans and blood work came back very good and no new tumor growth was detected. My blood levels for cancer cells are still not zero obviously but they are at a good low level. My doctor suggested to get me tested for MEN1. It is a scary thing for sure to think that I carry this monster gene inside me and possibly passed it to my kids or other family members may have it ( usually one parent). Testing everyone would be pretty difficult. I left my appointment happy that I have no new tumor growth but scared to think about what genetic testing could reveal. Life has been very hectic during holidays for sure. Can’t visit sit family, travel and gather. Most of my family members had plans to come visit in March but all of their tickets where out on stand by. The talk of a vaccine started and I was finally able to see some hope for the near future. I worked few gigs here and there but it has been pretty slow and we are living pretty much all sheltered in place. Both kids online at their schools and husband working from home. After the holidays vaccines were starting to trickle down to those who were at the highest risk but no travel ban outside the US was still enforced since other countries were struggling to get vaccines and get this under control. I was getting pretty nervous about my parents who are elderly and not in the best shape but they limited their activities and were pretty careful. Vaccines and politics were getting pretty heated so I tried to just avoid these conversations with everyone. I chose to have the shot for obvious reasons and that was that. I was finally able to get my shot in March 2021! My family also decided to get it and soon followed couple months later. I was also sent a genetic testing kit after a tele visit from genetics specialists and after a massive questionnaire which was filled out to see if I need this test. After the tele visit and all the paperwork I did a swab type test and sent it in. I was told it will take a while before I hear back. I tried not to think about the what ifs but it is not that easy. Not going to the gym because of covid took my outlet for distressing so I started to become a rusty being. I did a work out at home most of the days and walked outside if it was not too hot but frankly all this pandemic did was stripped me of any optimism for near future. Many people had their vaccines by the summer and even though I was feeling more comfortable out and about I still avoided big crowds and still wiped down everything from groceries to shoes etc. I was finally setting up my scan and blood work but our insurance was changing yet again and everything was getting pushed back. When I finally went in there was a massive issue with my veins yet again. It took almost an hour for them to finally put a needle in that stayed and did not blow. I was trying not to pass out and was put on a gurney. They even brought out the vein finder which found them and then they would freeze or roll. They started to look at other options like hands and feet. Several tries later and few nurses later we got one in!! Test went smoothly after that. Now we wait for results. It is a rollercoaster for all of us dealing with chronic illness and waiting for results is always the worst and hardest part. I always prepare for the worst news since I read all of the stories daily from my fellow Zebras and get worried that year 4 could be another tumor or worse. It felt like forever but I finally got my brief answer nothing new. Then month later finally got to go into the office to talk about the findings. No new tumor growth labs are all good see you next year! I told my doc that I am getting worried as the time goes by because the longer we are in the clear better chances that something will start growing soon and the emotionally I am not doing very well. I have to do this for 10 years and then he said chances that new tumors show up by the tenth year is very probable so this is life long and I better get comfortable with the idea I will deal with this forever. I know this is a chronic condition and I am ok with that waiting for another shoe to drop is a hard way to live. I go through healthy and not so healthy fazes for sure. People tend to come and go in my life and only those who are the strongest stick around and I get that everyone has their own shit to deal with and some relationships just don’t stand through the toughest times. Cancer does not just rob you from health and good life it also changes your personality in so many ways. I look at myself and don’t know who I am.

…….I finally received the genetic test results unofficial for now and they do not think that I have MEN1 gene mutation but there were some not so settling results and now I have to wait until January to meet with the genetic specialists to go over this in detail perhaps more testing is needed. I will add a link regarding MEN1 information to explain what I am rambling about! As always thank you for reading and your support.
November 10th has been designated as Neuroendocrine awareness day but frankly most of us zebras are pushing to change that into a month long event! The problem with this disease is that most zebras go on through life in pain and discomfort and many of us myself included are told that it is female problems, or anxiety or acid reflux or other bullshit doctors come up with to get you out of their office and they keep putting medical codes in so it looks like they did their job and gave you an answer! It is all bullshit!! It should be a standard test ordered if you keep going to the doctor complaining about these symptoms and they keep telling you it is ok. My tumor was growing for 8 plus years by the time it put me into the crisis by that time it was already spreading and eating me alive. I was the lucky zebra, my tumor was a slow grower but if it was not found ( by chance by my surgeon) I would be a pile of ashes today! Please ask for Chromogranin A blood test if your symptoms just don’t add up don’t let them dismiss you!!

https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132

https://www.mayoclinic.org/diseases-conditions/men-1/symptoms-causes/syc-20353064