What I have done: Radiation with chemotherapy, loop ileostomy surgery, port placement surgery, chemotherapy, chemotherapy “infusion” under my skin (yikes) when a needle worked loose, loop ileostomy reversal. Gosh, I have been wondering where my energy went, but when I write it all down in a list like that it makes sense that I still need lots of rest.
I have good days and “less good” days. On good days, I am able to get out and about and enjoy the world around me. Now that I don’t have an ostomy bag, sometimes I can forget I am a cancer patient! That is a joy in and of itself. I am hoping to be released to go back to my day job on Tuesday-keep those prayers and positive thoughts coming my way please! It will be hard to be at work on my “not so good” days, but I have a feeling returning to the structure and socialization there will mean fewer of those and more good days. I have to say a word of thanks to my employer and fellow employees there. They have all been wonderful to me, doing what they can to help out and never making me feel bad although I have missed a lot of work and this has gone on a long time. People there are kinder than I ever knew when they are needed and I appreciate all the help and support I have received.
What I have to do: Possible debridement of the area where the chemicals leaked. I’m not sure what, exactly, this would involve when the damaged tissue is under the skin. Hopefully I will know more about this on Monday, when I have my post-op check up. I am hoping this won’t be needed, but even if it is, it is a small thing compared to what I have been through. (That’s my story from now on when I face challenges, and I am sticking to it!) Then, the port will need to be removed at some point. I am not sure when yet. I guess some doctors like to leave it in longer than others. I may go shopping for one to get rid of it ASAP! I am ready to be done.
Then, of course, there will be very frequent follow-ups with different doctors over the next year or so. I am so thankful to my doctors, but I am also a bit sick of seeing so much of them. I think they would understand 🙂
I think it was the day after I got out of the hospital that I started deep cleaning my refrigerator with a great burst of energy and optimism. I made good progress the first day, but the energy faded and it took almost a week to get the job done! I still have about 5 minutes worth of work to do before it is truly complete. Managing my energy level will be a challenge for me. I want to do so much on the good days and it doesn’t seem like I am overdoing at the time, but the next day or two I may be totally wiped out. Oh well, this too shall pass.
I have three reasons for writing these personal things in a blog; it allows me to update people without talking about things over and over (which can bring me down,) it is helpful therapy to me, and I hope that it will help other people who are experiencing the same things in their life or the life of a loved one. I came across this blog written by Haddie Gladwell, a 19-year old who is living with an ostomy bag due to ulcerative colitis. I wanted to share her link with people looking for inspiration, because I think she has an absolutely amazing attitude and a younger viewpoint than I could possibly bring to the subject.