I know a lot of you are curious about how I’ve been doing. I know I’ve been a bit quiet. It’s that I haven’t been feeling well and my desire to do anything computer-y has just gone out the window. And also partly I’m not sure what to tell you.
I had a CA-125 test recently and it came back 923, which is a huge jump up from the 212 or whatever it was before. Which made me feel that oh no, the immunotherapy isn’t working, and I should start thinking seriously about hospice. I’ve gotten my will in order. I’ve been talking with my dad and the cemetery folks about being interred in the family plot and how that would work.
I’ve seen my GI doc, my local oncologist, my primary care physician, interventional radiology people, and talked on the phone with the Mexican oncologist, Dr. Ortega. Mostly the physicians are present and ready to just support me in life here and now as long as possible with the understanding that death is nigh. However, Dr. Ortega does not think automatically that the CA-125 number means cancer increase. I’ve had an abdominal abscess and fistula and so pain and inflammation and he thinks that number reflects that. He has faith in his immunotherapy. So I don’t know quite what to think.
The local oncologist Dr. Scott, has okayed getting a PET scan so we can really see what is going on. That will be next Monday. And she offered another chemo agent which is kind of low grade but also low side effects, and which she has seen help others gain a few more months to maybe a year. I’ve decided to go ahead and do that. Dr. Ortega is in favor of this. It will be another couple weeks before that starts.
Mostly my discomfort abdominally is continual. And I have a hard time with reflux up from the stomach. Anything I drink feels like it comes back up my esophagus and could just come right back up. This make lying down to rest especially hard. I have to basically not eat or drink anything very late into the evening, and hope that whatever I’ve taken in gets processed through and out thoroughly. Additionally I’m taking omeprazole which helps reduce stomach acid production so that my body isn’t creating more fluid and bile which would just sit there in the stomach and want to come back up. It’s a very difficult dance and balance to find. I spend the day sitting up because if I’ve drunk anything at all, for example apple juice, my favorite, there’s just no keeping it down otherwise. Vomiting is my last course relief to just get fluids out of the way, and it happens at least daily if not periodically during the day. It’s a relief, but it’s also a pain. I would so just like to drink something and have it process through without feeling like it’s going to come back up. This is the quality of life issue that is distressing and may or may not have anything direct to do with cancer. But maybe it does, and the chemo will help. We’ll see. I am tired.
Grant is good about continuing to encourage me to see the positive, and to focus on the good and the beautiful and the hopeful. He’s also good about being real with me when I just have to cry because I’m so tired of all of this. We’re continuing to truck on down the road, and we’ll just keep seeing where it leads.
We discuss how much we’ve been thinking about hospice. Basically hospice would mean not treating at all, and treating includes IV nutrition, so basically hospice means subjecting myself to starving to death, presumably under many drugs for comfort.
Or I’ve set up MAID, medically aid in dying, which is medication to hasten the process, but because of my digestive issues that makes it iffy that I would actually absorb the meds correctly. The other option is as an enema but that seems like a horrid way to go.
So I’m hoping the new chemo will give me some more time and comfort for awhile and delay that decision. But there are times when I’m like, this QOL, quality of life, is difficult and why am I still doing this? Hard decision. Grant wants me to stick around awhile longer.
In any case I have to admit that with chronic pain my ability to maintain C-ful-ness is severely restricted. I wish I were better at transcending. But this is hard.
And the state of the world right now is so distressing too, between pandemics, politics, and fires, that sometimes I really wonder if I want to stick around for any of this. Will it get better, or much, much worse? I don’t know.
In any case, this is what has been going on with me lately. Sorry it’s not more uplifting.
Staying C-ful with the Big C 
Hey there, you beautiful soul! You have zero obligation to uplift anyone, my darling Andrea. It’s all about what’s real and raw and authentic and what you need when you need it. You are loved and supported no matter what and regardless of how you process or share the details. Of course everyone wants to stay positive and see the “fight” in you and tell you it’ll all be okay and you’ve got this. Seriously though… it’s quite okay not to be okay. Let’s admit this situation blows. It’s the terrible, horrible and excruciating part of inherent human imperfection. I don’t have much for words, but I’m so thankful to know you, even from a distance now, and appreciate all that is Andrea. You’ve been an inspiration and a real live human; and have shared the good, the bad, the beauty, the reality, and the overall experience that has been your existence recently. I admire you while you’re down every bit as much as when you’re up. Not one person reading your posts can say they aren’t a better person for having crossed paths with you. Guar-an-teed. I love you, doll. You do you, and share as you’re willing and able. Grant… you’re just as loved and admired. Thank you for being so very there for this chick. Can we all just will you both back to Mexico, or somewhere equally gorgeous, for all the rest of your life’s moments… however many there are? Breathe, sweet pea. I know you’re tired. Hope is what keeps me going. Hope has a different meaning for each person and in each moment in time. Hope for what brings you the most peace; even if that changes by the day. You are wonderfully made. Thanks for being you!
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Thanks Angela. You are a dear. ❤️
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I woke up today thinking of you and noting the silence. I assumed it was because of present/ongoing challenges. I like the steps you are taking, everything from your will to trying another less harsh chemo therapy. I like that Grant wants your continued presence. And that your medical team is ready to give you whatever you want. Think of how much you have touched them. Here’s hoping you will have good information after the next tests. If I can offer any suggestions, it’s to focus on your immediate world and don’t read the news. The big picture is not the most important picture but often a diversion from what we need to do for ourselves. And our family. Rest, then write, we will wait for you.
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my heart just aches for you … you have been through so much I totally understand the feeling just tired…. but try to hang in there I pray for you
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Bonnie, thank you so much for your support!
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Merci Charmaine. You, too, are a dear. 💗
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Oh thank you for the gift of sharing a glimpse of your situation right now, Andrea. I was so glad to see your email! Have you heard the story of Richard Schwartz’ near drowning a few years ago? He speaks of his “freaking out” parts and the way they calmed when he reassured them that he saw them, was with them, they were not alone. It seems you and Grant are doing that. WITH is one of my new favorite words. I have a lot to learn about WITH-NESS. With honoring, and care and prayer for you and for Grant as he walks with you,Lynn
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Thank you for sharing that story. WITH is a good word. Hugs and love. I hope you are well enough in CA. Breathe as easy as possible.
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Thanks for using some of your limited energy to update us. I think of you daily and admire your resolve to leave no stone unturned as you battle the cancer and all the setbacks as well as the successes. The pain and fatigue must take all your energy. Thankful for Grant and all the support he gives you. Just want you to know you are loved and thoughts and prayers are sent daily.. Eleanor
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Thank you Eleanor. ❤️
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Dear Andrea. I have had you on my mind non-stop since your last post. You are so kind to still share with all of us the ups and downs of your journey. You are so brave and so deserving of a break. One of your friends above in the message list suggests not reading the news. I second that. You should not waste any of your time with things that have zero bearing on your life or quality of life. I know Grant has been and continues to be a rock in your life. Make the moments count and enjoy the little things. Much love.
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Dear Andrea, You’ve been on my mind and sadly I hadn’t seen any updates until now. May all parts of you feel the deep companionship of your soul as you make your way back home. I believe we will meet again and that brings a deep smile inside. Sending you so much love.
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