As I lay here in bed while I should be sleeping at 4 in the morning, I'm thinking of everything this past week has brought me and how much better I feel even though I'm not sleeping like I should be,
I'm in Washington DC with the family for Spring Break. This trip was planned before I was diagnosed in Jan and was one of the first questions out of my mouth. Can I still go. When the answer was yes from the doctor I really hadn't had any worries about the trip. Spring break fell between treatments. It had been taking me about 8-10 days to start to feel better after a treatment and we were leaving by train on 7th day after a treatment. Well , for some unknown reason to me I didn't feel good at all the whole week. I actually was having the roughest time of all. I almost feel like the doctor may have upped my dosage with out telling me. I wasn't nauseated at all ....I was very fatigued, climb the stairs and need to sit down and put my head down. I wasn't eating. A bite of something and that was it. I wasn't drinking much either and believe it or not I was over my love of pellet ice cubes too. Then to make matters worse I developed open sores on my bottom cheeks!
Paul and I both called the doctor Monday and the nurse wanted him to describe the sores to her. Guess what peeps? He hasn't seen the sores, He offered to bring me down there and the nurse kept saying that she couldn't help us with out knowing what the sores looked like. But she wouldn't let Paul bring me in. I think I was so upset that I didn't call the nurse back to describe the sores. Tuesday I was trying to help Paul pack for the trip as we were leaving at 10 Thursday for Chicago to catch the train to DC. I figure I would call the doctors after hours. That way I could talk to a doctor. Sadly after describing the sores to the on call doc he didn't think the sores were from my chemo drug. Well I wasn't actually calling to see why I had the sores I w anted and needed some meds for these sores. doctor and he wanted me to call back in the am to get an appointment. We asked if we should go to ER or Urgent care or even my female doctor but he said it would be better if someone for the office could look at it. Here I was trying to be on the ball and get some meds before we left on Thursday for our trip. Anyway we called back on Wednesday morning and after telling the nurse we were suppose to call for an appointment they said a nurse would call back soon they were tagging the note as urgent. The nurse again wanted to know what the sores looked like, we told them we were suppose to get an appointment but they said they were to busy . No one had any openings. UUUUGGGGGHHHHHH. But she did recommend two different ointments to [pit on the sores.
I want you all to know that I have only made two phone calls after hours to this office. Once in 2007 and now this phone call. I can not believe this is normal practice. It's so frustrating. I don"t even get it. And yes we had mention on more than one occasion that we were going out of town.
So Wednesday night I tell Paul I didn't want to go and we had a talk about how he still needed to go for the kids sake and his. And when I felt better we could try to find a flight for me to catch up with them. The girls were sad but I told them I would come when I could , James was okay with mom not coming. He just wanted to get on the train. In fact I remember James coming home from school on Wednesday. I was laying on the coach and he said :Are you feeling better mom? I told him no. He then asked if I wasn't feeling better in the morning was I going to DC and I said I don't know. would you be sad if I didn't go and he said matter of fact..NO. I said I was happy to hear that.
I watched the kids pile in the van. There were no tears from anyone. Whew
My sister came to stay the night with me bearing many of varieties of food to try to find what I could eat. Not much luck in that department. But I did get a great back rub,
Friday morning came and I was hungry so I tried a little of everything and even had some awful ensure. By mid afternoon and no nap I figure I turned the corner and started to think about looking online for plane tickets. And trying to figure out when I should catch up with the rest of the family. Some good friends that live near by were walking their dog while I was resting on my deck. They checked in on me and offered to start searching for flights. Then my sister came back to my rescue after her day at work. I was feeling like trying something to eat so I rode with her to Culvers to get out of the house and we ordered a fish dinner to go to share. I nibbled but didn't get 1/2 of the 1/2 I took . The exhaustion, the dry mouth, everything was just not cooperating with me. By Friday night I was feeling better but not better and a flight was bought. A Saturday flight in the afternoon. The good thing was my sister offered to drive me . My mom came along, On the way to Detroit we stopped at McDonald's for a rest room and we ended up ordering lunch. I just stared at the menu and kept thinking gross. But I ordered a chicken wrap. Figured no bread was good for the the dry mouth and I could just eat the chicken or try. Well I DID IT MOMMY. I ate all the chicken. YEAH for me I didn't eat the wrap or anything else but I did eat the chicken.
Another good thing was I had a direct flight and it was only a little over an hour long.
I was gifted from those great friends that live near by that offered to help find a flight , the gift of first class. It was my first time and it won't be my last . WOW.
The family was very excited to see me and from the airport we went to see our friends , We were able to visit for 3 hours before I was ready to leave for rest. It was a short visit but a much needed visit.
Sunday we went into DC and went to the SPY Museum. and The Smithsonian History museum I think it was called, No that was yesterday we did that. Tuesday ...today we are doing the Cherry Blossom's and Vietnam memorial and Arlington Cemetery. I have a wheel chair in case of tiredness. Everything else we do is just planned the evening before. We leave Thursday at 4pm and get into Chicago at 9 am.
And every day I have ate a little more. 1/2 a burger and 2 tacos today.
So this is my update until after the next treatment which should be April 14. I haven't received my schedule from the office yet, I;m sure it is in the mailbox waiting for us to open it,
Just to up date everyone that has volunteered to bring dinners too. If you will wait to sign up for anymore.. I don't know how many treatments I will have and I would rather not see people signing up all the way out into June and July. I don't want to be having treatments then.
Please keep praying. I don't know where I would be with out all of your support.
Thank you for caring my friends
Kelly
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