Johnna ’s Story

Site created on January 11, 2022

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Newest Update

Journal entry by Johnna Lewis

Hello everyone. I know it has been a really, really long time since I have updated. Honestly, I have been trying to process all the sudden changes that happened. It turned out to be a lot more for me to adjust to than I realized. I went from constantly being busy with something, packing, unpacking, traveling  to the center, being in airports and flying,  being at the center, at home I was making arrangements and Dr appointments and dealing with schedules. I was around people so much due to the traveling and at the center.  That all stopped and I now spend most of my time alone. David works shift work, nights and days, 12 hour shifts, and drives an hour one way. So we have his schedule to work around.  I didn't realize how much I needed and would miss the human interactions. I also don't have the same ministry of giving that I had when I was traveling and being at the center. The cards, the hats, the ability to share my story and spread awareness as well as be a witness for my faith.  I went from being constantly busy with this or that to little to do. I'm still trying to adjust. I guess I felt like I had more of a purpose when I was around people and able to give and to share. So honestly, I've been a bit lost the last few months in some ways. 

Being able to go to the Outer Banks Center is a blessing. I've been and had five treatments now. I've switched from Tuesdays to Thursdays. Everyone there is kind and very sweet. We are usually only there for a couple hours. 

As for what is now going on with my health. I had a PET scan in February. I'm sad to report that I don't have good news to share. The cancer has spread and grown more in my peritoneal. I think that's right. Its the lining that surrounds your internal organs. There is a mass growing in my lower right abdomen. That's where the original one they found was. I have several ascites. Those are fluid pockets. All of this is putting more stress on my colon and small intestine, which can cause bending, twisting, and blockages. I have to be really careful and pay attention for any symptoms, fever, vomiting, and get to the emergency room if this happens. February 3rd I actually had started vomiting, which I had never done before. Not even when I was in the hospital for so long. We went to the emergency room that night. They ran lots of tests and gave me fluids, but thankfully there wasn't anything bad enough then to keep me.  My cea number continues to go up. I'm not sure what it was when we went last week. I chose not to look. 

The truth is that the treatment doesn't appear to be working. I'm basically at the end of my options. The only one left is the one that myself and my family are very much against. It's extremely harsh and will take away my quality of life and likely make me sicker and could have lasting effects. The doctors even admitted this. Then it might only buy me a few months time or none at all. I won't qualify for any clinical trials or anything like that unless I do that treatment. So this is where we continue to put it all in Gods hands and His plan for me.  I did what I said I would never do and asked about time. I'm not going to share it here, because I'm not going to claim it. Only God knows for sure and I believe in miracles. But it is longer than what we expected to hear. That doesn't mean it's going to be easy. My pain has increased. I'm going to be getting another celiac block done like I was having done in Atlanta. I have to go back to the hospital in Greenville to have it done. Not sure how I feel about that, but it's where they do it. There are definitely things I miss about Atlanta. My weight is down to 95 pounds. I am eating. I'm working more on that as for my height I'm at the lowest I should be. Some days are really good and some days are really bad. But every day I'm here is a blessing.

Please continue to pray for me and especially for my family and those close to me. We have a lot of really tough decisions to make and things to accomplish. While making as many memories as we can. Know that I haven't given up. I hope none of this came across that way. There is always hope. Thank you for listening. Reach out to me if you want to. I don't mind talking about things. Especially if it will help someone else. Much love and appreciation always.  J.  💙❤

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