This is Alexx writing again for my mom. She isn’t feeling so well the past few days, too weak to write. All of your love, support, and prayers would be greatly appreciated at this time.
April 8th and 9th, Day +1 and Day+2
I’ve developed diarrhea and vomiting. I don’t have nausea, but whenever I cough or change position I gag and then vomit. It’s green and I’m not eating much. I try to drink 2 ensures a day and drink water but I find it makes my stomach hurt worse. Alexx keeps telling me not to eat since it makes me worse and she usually manages patients with this condition with bowel rest—but the doctors want me to eat.
I was doing well on Saturday until around 1pm and then my abdomen started to become progressively distended and bloated. There was a lot of pressure and discomfort and I felt I needed to get all of the stool and gas out. Or vomit. Or both. I’ve had a small bowel obstruction before and I’m getting very worried that it’s going to happen again.
Alexx and Ric are by my side and advocating for me. I feel aweful.
In the evening the doctor came to see me. He examined my abdomen and said it was soft but distended and full of air. He said he would try a laxative and if that didn’t work he would get an abdominal X-ray. The Miralax made me have many episodes of diarrhea but my tummy still hurt. The abdominal X-ray showed lots of air.
April 10th Day +3
**Wooops, it’s the 10th not the 11th. It’s hard to keep track of time here**
I did worse overnight. Lots of pain. Gagging up green bile. My tummy is still very distended. Ric was on the phone with Alexx every hour. None of us got any sleep last night. Thankfully my vitals are stable–no fever, normal blood pressure, no evidence of sepsis. Dr Rowe came to see me this morning and says I have chemotherapy-induced colitis, he doesn’t think it’s infectious at this point but they are continuing to treat me with strong antibiotics. Since I am getting worse they are going to make me NPO ( nothing by mouth), change my medications to IV, place a nasogastric tube to decompress my distended abdomen ( I hate NGT tubes, so painful and uncomfortable; but Alexx says it should help me feel better and relieve the air in my belly; also it will stop me from vomiting) and give me TPN (total parenteral nutrition) through the Hickman. TPN will be feeding me with calories through my veins. Even though TPN has its own risks (infection, electrolyte abnormalities) it will help me get better nutrition and increase my albumin (an important protein that helps control the pressure in the blood vessels and the fluid shifts in the body). I might not be able to eat or drink for a week. Taking it day by day. They did a CT scan of my abdomen today to assess the extent of inflammation and make sure there isn’t perforation (ruptured bowel). I also got 2 units of platelets today before they put the NGT in. When the NGT went in, a lot of bile starting pouring out. My white blood cell count is still zero and will be for at least another week. I need those cells back to allow my GI tract to start healing.
Alexx keeps telling me I am sick but stable. She and Ric are keeping a very close eye on me and helping to take care of me. I’m very weak, sleep-deprived, and feel aweful but I am trying to focus on the end result. I’ve been in distress for over 12 hours and I hope the team can do some interventions to offer me relief. We are all frustrated.
When we were at the Western Wall, a religious man started a conversation with Ric. When he heard about our situation he gave Ric a book that contained this prayer.
I appreciate all of the love and support from home.