Unexpected Bumpy Recovery Road

I returned home thinking I was on the road back to recovery. Each of the first few days, I was eating a little more but then it started getting hard. I was due to return to Mayo for treatment but knew my oncologist would want me stronger. I was correct, he converted my appointment to a telemedicine. We did discuss my eating and our concerns. His take on my malnutrition was it was normal given my cancer. Additionally, he added that the since I have cancer lining my stomach it impedes the amount of space available.

I had received advice from two doctors on ways to consume large amounts of calories. The struggle was real. If I drank fluids, they filled my stomach and there was no room for food. If I ate, there was no room for liquids. I finally decided to try to consume liquids with large amounts of calories.

Lesson of the Day: Milkshakes on an empty stomach....BAD!

This was a huge step back. The milkshake hit my stomach, full of bile and then it left my stomach quicker than I could react. And it kept coming. This shut me down from eating a lot of things because I started being very cautious when I consumed anything to weather my stomach was grumbling or rumbling. Many things were turning me off again. 

Meanwhile, home health care was coming but no physical therapist and no occupational therapist. Home health care has very kind nurses but they check my vitals. Additionally, my bipap machine was not working well. The machine in the hospital really hurt my head. The settings on my home machine are so high that it wakes me up often. Only my pulmonologist can change the settings so the machine sits and waits because I need sleep.

My family was very concerned. Mom and I were getting tense. I fully understood I was in trouble; although, I felt like others didn't think I knew. I was reaching out to my doctors telling them I needed help. The nurses were giving suggestions, which I was trying but nothing was working. My calorie intake was extremely low. Some days with no calories at all and a good day was 150 calories. I had no energy to move. Just to go to the rest room took everything out of me. I was scared and felt no medical people were helping me. My mom was ready for me to get my affairs in order. This is the most scared I have been in my life. I knew this was not sustainable, nothing was working, and no medical person seemed to be responding.

The week came to return to Mayo for a CT scan to check the cancer growth, blood work, and treatment. I was feeling horrible. No energy, could not eat, and could barely function. My mom asked if I wanted to cancel. I said no this is important. After I got the CT scan, I went to the hotel and was done for the day. The next day, I felt even worse. Again, mom asked if I wanted to cancel. I said absolutely not. I wanted my oncologist to see me this sick. I needed help. I felt no one was taking me seriously. Every time I go for treatment, I look healthy and I am in a good mood. This was different. I needed him to see it. He did! 

When I was discharged from the hospital, I was supposed to have follow-up appointments with pulmonary, dietary, endocrinology, oncology, and home health care PT/OT. I am still waiting for most of these. 

My oncologist was concerned with what he was seeing. Although in good news, the CT scan showed no growth of the cancer - it has remained stable over the past few months. He jumped on the phone with endocrinology when he found out that I had not been seen yet because one of the issues that may have shut down my eating was adrenal gland malfunction causing cortisol level issues. He decided I was not in good shape for treatment. I asked (again) for fluids. He did two units of fluids and a mega dose of steroids. We decided to stay the night because he wanted to know how this would make me feel. I also asked him to order fluids for home health care. 

On Friday, I got one more unit of fluids and got him to agree to fluids at home. 

We drove home late Friday night, as we were pulling into town, we got word that my uncle who has been battling his own issues with COPD as a lung cancer survivor with a brain tumor was being sent to the hospital because he couldn't catch his breath. He ended up on a ventilator. My mom dropped me off at home. The next morning, she got up and went home to see him. My other uncle came to take care of me. We are a very blessed family to be able to support each other through our ups and downs. I will not lie, we are ready for some ups! 

It wasn't the most exciting birthday this year but I was well loved...

I am under the blanket!

Gearing up for Matchbox Twenty in Nashville 2022!

For tonight . . . I'm just sayin' XOXO