This is an otherworldly experience. The outside world has ceased to exist. I wake up in the dark, take a walk around the hospital floor – shuffling, shuffling, come back to bed, sleep some more, get woken up for my morning blood tests, have my vitals taken, take my medicines at regular intervals, meet with my doctors, work with my nurses, order food, and continue with the day.
I am getting excellent care. I have multiple teams of doctors with their physician assistants in tow who come to see me every morning and check on my status. My surgeon has seen me every day and told me that the impacted stool will pass into the colostomy bag. I feel secure about that now.
My oncological team visits every day too. Today, I asked them how long I have even though I know that they don’t know. They told me I would be starting treatment soon and we could talk then.
My colostomy nurse came to visit and showed me how to change my bag and keep my stoma clean. A stoma is the piece of the colon that now sticks up through the skin. Yes, it sounds disgusting and it looks disgusting but I have decided to love my little stoma. It has suffered enough. They tell me that it is swollen because my whole colon was swollen.
My mom came to visit and the nurses are wonderful.
I have been told to gain weight and eat the most fattening foods out there so I had chicken pot pie, mac and cheese, whole milk and a chocolate chip cookie for dinner. I couldn’t eat it all but it was delicious.
I’m running out of data (using my cellphone as a hot spot) so I may not be able to write until I get home … but I am here, doing well, getting stronger, and excited about living the best life I can for as long as I can.
Goodnight.
Love, Molly2923
The next 6-8 weeks with your stoma may be hard. I promise it will get better. Did they manage to biopsy your tumor during surgery? With newer drugs, it’s more important than ever to know what, if any, mutations your tumor has and whether the tumor is MSS or MSI. It’s a bit of an explanation, but your oncologist can explain it to you (if he can’t, it’s time to find a new one – fast). Don’t let anyone put a timeline on your life. No one knows for sure. Don’t be afraid to look for second opinions, in fact I recommend it. Any good doctor is going to be okay with that. There are times I wish I had, since I might have avoided chemo entirely. The biggest advice I can give you is to do your research. With knowledge, you can better engage with your doctor and be better able to advocate for yourself. You’re your own best advocate.
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