The family took me out for breakfast late last month to celebrate my 10-year transplant anniversary. I was still having trouble swallowing but I thought that soft-boiled eggs might be manageable. Unfortunately, the waitress had no idea what I was talking about. She checked with the manager and came back to tell me they don't do them.
Someone suggested Poached Eggs and everyone agreed that they were just the same. They weren't. I drank a lot of tea. Then someone else suggested that I get a Milk Shake on the way home - it would be tasty and filling. I stopped at the local Carvel's for a Vanilla one.
It was great!
On the following Monday, after Radiation, I stopped at a Burger King's for a Chocolate Shake. It was OK but the Vanilla was better. That Wednesday, a friend stopped by with a Coffee Shake which I didn't care for. I was planning on picking one up every now and then when things took a bad turn. I developed severe stomach cramps which the doctor's blamed on the milk (I really hadn't had any for a long time). So much for Shakes.
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I had spoken to the nurses at the Radiology Office about the Food Tube and they set me up with an appointment for Friday, the 30th, at 2:45 which I would go to after Chemo. After Radiation that morning, I drove to the Hospital (3 minutes), parked, and went inside like I have been doing every Friday. I went to the Front Desk and told them I was there for Outpatient Infusion. They didn't ask for any identification or proof just gave me a badge to wear.
I could wander around the hospital all day and potentially steal stuff and no one would question me. And, when I'm done, I turn in the badge and they give me a free pass for the parking.
The Chemo went well and I made it to the Gastroenterologist on time. His opinion was that since I was so far along, I didn't need the tube. I mentioned this to the nurses on the following Monday and they just set me up with someone else.
I met with him and we agreed to do the surgery on the Monday the17th.
Starting on Monday, the 10th, a friend would pick me up each day for whatever treatment I was going to. This was a huge help because I was starting to tire very easily. (And she helped me do whatever shopping I needed to get done.)
Friday, the 14th, I was back for Chemo and this older man was already in one of the chairs and all hooked up.
We were on opposite sides of the room so I didn't get to talk to him but I did hear him say that he was 94 and he was wearing a hat that said "Okinawa Vet". Every once in a while a life lesson pops up. I didn't feel so bad about what I was going through.
On the 17th, my Daughter drove me to Radiation then the Hospital. We parked in the lot.
I registered and we went up to Same-day Surgery. this is on the same floor as Outpatient Infusion so I knew a few of the nurses. They brought me up around 10 and I was back (after waking from the anesthesia) about 11:20. Then things went downhill. No one would tell me how to use the tube and I had to wait for a Dietician - which took an hour and a half. Then I had to wait for a Case Manager so a Visiting Nurse could come out to show me what to do. When he showed up - 45 minutes later - he said they wouldn't send anyone out for something as simple as this.
I wound up going back to the nurses at the Radiology Office who gave me the injection system and showed me how to use it.
It's not complicated.
(To step back a bit, one of the reasons I agreed to the tube was because the nurses told me my insurance would cover the expense of the nutrition drinks. They won't. I have to make my own arrangements.)
I've been using the tube now 4times a day (roughly every 3 hours). At first, I spilled a lot but I've got it down pat now. This is how I see it.
I'll probably be using the tube for at least a month but my treatments are coming to a close. I've got 4 more Radiation treatments and 1 more Chemo. I am feeling stronger.
It's almost over now.
