This post might be a little lengthy and it is definitely a "keeping it real" post. I have had a lot of time to sit and think about Jody and myself, our circumstances, and people.
First though I will start with how he is doing. The week and a half or so after we got home from the cancer center he was sick. For a solid week it did not seem to matter what pills I gave him nothing controlled the nausea. The sight or smell of food and he was sick. I like to think that means the chemo is working. After the nausea went away he seemed to be doing pretty good for Jody. I am going to stop here and go into detail what pretty good for Jody means. I just really feel like people don't understand what that means right now. Most people will never fully understand what it means. Pretty good means I can sit on the couch and eat a sandwich next to him with out him getting sick. It does not mean that we will get in the car and he will be sick 5 minutes down the road as he is on most car rides. Pretty good means he got out of bed, showered, and came out to the living room. It means he can take a walk down our dirt road a few times a day with me and the dogs. It means he might have eaten a little bit today (two eggs for breakfast and 1/4 of a chicken breast and some asparagus for dinner). It means he will make it through two or three TV shows before needing a nap. So, most of the last 5 days have been pretty good. All but yesterday. He was nauseous and sick most of the day. After a good night sleep though he had a good day today.
Really there is no new news with treatment right now. We leave on Wednesday for the cancer center and should get his labs the same day. We are praying for his numbers to have any kind of decrease. Even the slightest would be hope for us.
I want our church family to know how unbelievably thankful we are for them. This has been the loneliest time in my life. The covid19 has made it worse. Sometimes I get a text from someone at church and it is just to let me know they are thinking about us. I really appreciate those texts. One couple never misses a beat. They text almost every time after chemo to check on us. I say text but, he used to call. Quite often I don't feel like picking up the phone and talking. It's draining some days to open my mouth. But, I always knew they were thinking about us and praying for us. Mrs. Parker I know you will be reading this and I love when I see your messages that you have read this and are thinking about us. I can actually hear it in your voice. I want everyone to know that I really appreciate it when you do just drop me a line to say we are thinking about you both. I think a lot of people don't know what to say to someone with cancer or their caregiver and they just avoid us altogether. Asking someone in our circumstance "how are you?" can very much be a loaded question. Most of the time I will say fine or good. If you are one of those lucky people I unload on it is because I trust you and quite possibly you caught me after one of my melt downs. I'm sorry if this makes you uncomfortable but, it doesn't mean I expect you to do something to make me feel better. I know better than that. Sometimes I just need to let it out. I don't want to be told I am strong. Actually I am finding most of us don't want to hear that. I am not any stronger than any of you. I do what I have to do to get through the day. Then I get up and do it all over again. No less than anyone else would do for someone they loved. I really think of it more as self preservation.
My husbands family is also great about making sure he knows how much they love him and are thinking and praying for him. I think his little brother texts Jody almost everyday and checks on him. I believe if this Covid wasn't still going on he would be asking to be down here helping. Also, a huge shout out to his cousin. She will listen to me anytime vent and let it all out. The good, the bad, the ugly. I would say she doesn't judge me for what comes out of my mouth but, I don't know what goes on in her head. She might judge and not let on but, I appreciate her.
My husband is amazing through this. I can't imagine doing this with anybody else. I am in a lot of esophageal cancer groups and Jody is a fighter if ever there was one. I don't think Jody's faith has wavered one time through this. I actually hear him singing hymnals sometimes around the house. He pushes no matter how bad he feels to do the most he can that day. It really is amazing to see how hard he fights through this knowing how aggressive this cancer is and the chemo he has been on and is currently on.
I have had so many people talk about the story or testimonial we will have when he comes through this or the good that will come from this. I just can't seem to see that. No matter how hard I try I can't find anything remotely good. I can't even say I would have a good testimonial after this. I am sad, angry, bitter, hurt, scared, frustrated. So many things but, not one of them can I find good in. What good comes from watching your husband suffer? What good comes from the uncertainties cancer brings to your life? Or should I say what good comes from what cancer takes from your life? Is there good to come from the expense it has on a family? Maybe, I can say that going through something like this has truly opened my eyes to how short and fragile life is. Or that people I thought of as some of my closest friends are not as close as I believed and it is time to let them go. Or maybe the good is that it brought my high school best friend back into my life and a new friend that I would now consider one of my closer friends. I still don't think it is a fair trade. I don't think what I am finding that is good is a fair trade for what I am watching my husband go through or what I am going through. I have talked with many people that have fought, are fighting, or watched a loved one fight this nasty beast and not one of them talks of good coming from it. I still see many more tears, sadness, and emptiness in their eyes, even years later. Obviously, when a person can say they are NED (no evidence of disease) they are probably smiling. I still would say they can't actually find the good from having cancer. I am even resentful at times when I see other people on Facebook that make chemo look easy (great for you but, that is not always the case...) or that get good news all the time. I am tired of bad news. I dread going back to chemo now and hearing what his dr.'s tell us. I don't think there has been a day that I haven't cried multiple since coming home from the last chemo. There is just not anything good I can find from this nasty disease.
All that being said if you know someone else with cancer and you really care make sure they know you are thinking of them. This does not mean to start blowing up my phone. I know you care if you are checking for updates and reading this blog. I know most of whom reads the blog and we appreciate and love that you are taking the time to read. Most of the time we don't want a lot of people around. We (as in the majority of people doing this) will turn down many offers to go out, have coffee, lunch, and more because we are completely drained. Emotionally, physically, and mentally drained. But, to know people care helps to get us through the really crappy days. I have had a couple people offer to come sit with Jody and keep him company so, I can have a break. I appreciate that as well but, it will never happen. If he is to sick for me to leave him alone I will not leave him. I worry way to much. In a pinch Gannon will run for us. If I need a break and to get away it will be when he is having a good day and it will on be for a few hours.
The take away is to make sure they know you care. It's a lonely scary time.
On a side note I made a mobile for Allison's baby girl with fairies. I found this to be extremely calming for me and give me something to do at chemo. I also realized that wine fairies seem to be all the craze right now. So, I thought this would be a great fundraiser to help with all the related cost over the next year or so. Please do not feel obligated to buy a fairy but, if you would like one the link to the fundraiser is below.I have also added a few pics. IF you go to the link I think you can see the mobile I made for baby Iris. I have also been making fairies for two young cancer warriors (no wine bottles for them). Jenna Rose is a 15 year old teenager that has been fighting stage 4 ovarian cancer for a year in a half and Little Maggie is our friends daughter that just started her horrible fight with ewing sarcoma. As horrible as this is for Jody and I, I can not imagine being the parent of a young person not yet having experienced any sort of real life and watching them go through this. The bottom photo is Jenna Roses fairy in her cancer ribbon color.
