This will be a different kind of an entry. I was encouraged by one of my very good JLand friends to be honest, and write about what REALLY happened while I was in Hershey this trip. Not just John had a fever, etc, etc. But she thought I should give you a glimpse of some of the things that went on in my day to day life as we went through our stay while John and I were in Hershey for his hospital treatment. So here goes.
First thing that happened was that John had had high fevers for over a week. The cancer clinic at the hospital called and told us to come down immediately, in less than the amount of time it would take to drive there! We scrounged for a ride. Remember, I have narcolepsy and can't drive. This is an issue that always causes me some anxiety. But we found a ride and threw some things in bags and headed for the cancer center at the hospital.
When we got there, John was an hour late for his appointment, because they made him get bloodwork for an hour. This made me nervous as I did not know if he would be able to keep his appointment. The woman who had called us on the phone stressed we must not be late. But they did wait for him in the end. While he was in the infusion room getting his hour's worth of bloodwork drawn, the nurses could not even get blood out of the white lumens, which they needed to, to culture them to see if they were infected. Oh well.
Finally we were done and went back to sit in the waiting room. All cell phones were to be turned off, but I had left mine on b/c I needed to talk to the director of Hope Lodge. I had talked to one of the volunteer/managers earlier, and he had said that we did not have a room there for the night. I was horrified, b/c we had arranged it a couple of weeks earlier. We really didn't have enough money for more than two nights in a hotel, and I was wondering if John and I would be out on the street. When the phone rang, I was in the waiting room, in a fit of narcolepsy and asleep. The phone was ringing and ringing (of course it was supposed to be turned off). John shook me awake. I ran out into the hall. Don't worry said the manager. Charlie is old and doesn't know what he is doing. You can have two weeks here. I thanked the manager profusely.
Finally they called John to come back to see Dr. Claxton. Of course his temp had dropped to 99, LOL, just b/c it was his turn to be seen. In the doctor's office Dr. Claxton asked us to stay in town (at Hope Lodge), and he would try to get some issues resolved with John. He said he could not get him a bed with a temp of 99 b/c there were not enough beds in the hospital open.
As we were leaving, one of Dr. Claxton's nurse's came running out saying that John needed more bloodwork, and saying what kind. So we went back into the infusion room for something. When it was over, I told the nurse John needed more bloodwork. She argued with me, and got her supervisor, who also said I was wrong. They were a little pushy towards me. I finally said, look, Dr. Claxton said he needed it. (I hate to be pushy, but i WILL fight for my husband.) I said, there has to be a lab order around here somewhere, because Dr. Claxton is calling for more blood to be drawn, and it must be important. Finally they found it, LOL, and drew two vials of blood. I am laughing now, but it was nervewracking at the time, trying to convince them.
John sat shivering in the chair at this point getting his blood drawn. They took his temp. He had a pretty high fever. Of course. Dr. Claxton came in the room. Of course nobody said anything to him. I FIGHT for my husband. I went up to him and told him what John's temp was. I heard him asking a nurse if there were any beds open in the hospital, and she said absolutely not. So that was the end of that.
We went back to Hope Lodge. That night John's fever got extremely high. I called the night doctor at the hospital. The hematology/oncology fellow on call. He said, I will find a bed for John, and save it for him, and call you back when it is open. At four thirty in the morning admissions called us up and we rushed over to the hospital
Now this is getting entirely too long, so I will only mention a few more things. The purpose of this entry is to show you some of the things I go through, and have anxiety over while I am there.
One issue is how to get rides to the hospital. Remember I have narcolepsy, so I am not driving at all now, not even the short distance to the hospital. It is short, but too long to walk. It is not easy to get a ride back and forth. I go through a lot of anxiety over that. I can usually catch a van M-Fri, but I have to go at very particular times, and it is not even a guarantee, so I get very nervous sometimes. On the weekends there is something called Security. They take you sometimes, but say DO NOT DEPEND ON US. They don't like to take you on a regular basis. SOMETIMES they do anyway, but they will act really nasty towards you and complain. My stomach can go into knots on the transportation issue alone. And we are not to ask anybody at Hope Lodge to take us anywhere. It is a rule there.
So having to go grocery shopping, or to get my meds filled is a nightmare. I have anxiety fits over that one. Not real ones. I do trust the Lord, I really do, but this time I was under stress, more than other visits. I guess I am just tired. Fortunately, somebody at Hope Lodge overheard me mentioning something about my meds, and took me to the drug store, and grocery shopping and then to Hope Lodge and to the hospital! Praise God for that. I had food for the week, and didn't have to pay for the cafeteria. I don't have enough money for that. And John had food to eat when he got out of the hospital, although he didn't eat much of it.
Another problem was clean clothes. I had to wear my clothes over and over again. Yucky. You can only wash during certain times at Hope Lodge. I was at the hospital at least 12 hours a day, b/c I needed (no, wanted) to help John. Help him wash up, help him go for walks, change his sheets, make up his bed, make sure they were giving him allhis treatments (and hey, this is one of the better hospitals!).
The hospital was hard. I dealt with a mean doctor, one who wouldn't cooperate on filling meds at first. She didn't want to write out some scripts for John. He needed them. She also was giving the main doctor some misinformation on John. I corrected her. I WILL fight for my husband. Perhaps she did not like that she was corrected. I did it in a very professional and sweet way, but I did it. I think she may have felt it made her look stupid. Tough. She was kind of mean to us after that. Not kind of mean. Very, LOL.
Okay, I have gone into enough. I won't even go into what it is like to sit in a chair for hours upon hours in a hospital room when you are narcoleptic. I fell asleep so many times it was not even funny. I had to do a lot of activies to stay awake. Like get up and walk around.
The final thing I want to say is I think they let John out too early. Because they needed the hospital bed. John is neutropenic. His white blood cells and neutrophil count is too low. We didn't find this out until he was discharged. I called Mitzi and asked why John was still sick and weak after he was released. She looked at his counts and told me why. She said I must keep him very healthy, and must come back if he gets a fever of 100.5 or higher. You can actually die from an infection from this. Oh, that is my main stresser when John goes in the hospital! Will he die this time? Anyway, even though he no longer has the cancer, he can still get very sick from the complications. Okay, now i am being VERY honest with you all.
Okay, this has gotten entirely too long. Hope it was okay I shared. How did I do, Merry?
Love you all lots, Krissy :)
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