Patty's epic adventure

  8/31/21 Today is the last day of August. It’s very late Tuesday night. David took me to my ophthalmologist appointment yesterday morning. It was downtown at the MD Anderson Medcenter. He dropped me off and then headed back up to Flint. He had a doctor appointment yesterday, so he needed to go home. He stayed there last night and drove back today. He got here about 5:30 this afternoon. The ophthalmologist said my cornea had several scratches in it. I have a cataract in my right eye. I need a new prescription for glasses. Oh and my eyes are too dry. I’ve been dry for years, and I just put drops in them. That’s not working well anymore, so I made an appointment for next week to have my ducts cauterized. I think David got a little woozy when I was telling him about it. Courtney picked  me up from that appointment and brought me out to the West campus for my radiation. She brought me home and we made it here just in time because that rep was here to measure me for my torso pressu...

  Sunday  I cannot remember what I said in my last post. Dang it. I know I haven’t posted anything since Friday, though. Courtney and Warren came over to visit yesterday. They fished for quite a while in the lake right behind me. I stayed in the RV and watched them through the window the whole time. It was quite entertaining. They came back inside for a little while and then went to the pool. I got to visit with them in between each activity, and it was really nice. Friday night, a storm came over. David and I were watching a movie and listening to it thunder. Then we heard a freight train. David turned the volume down on the television so we could hear a possible siren going off, because there are no trains near us. We didn’t hear any sirens, but it sure was creepy. We considered leaving the RV and going down to the rec hall. This RV is no match for a tornado. After a few moments, we didn’t hear the train anymore, so we stayed put.  My throat is getting better each day, ...

  8/27/21 Today is Friday. I had 4 appointments today.  Gads. They started at 8:45 and my last one was at 2:30. Long day for me. I’m glad I have the weekend to rest. I’m so tired. I had an x-ray of my left elbow today. It has hurt like a buggar since January 7th. It started when I had surgery and hasn’t gotten any better. No one can figure out what’s wrong with it, so maybe they’ll see something. My biopsies came back and didn’t show an infection nor any cancer in my esophagus. I have an appointment next week with the rep for the torso pressure suit. She will be here to measure me, so perhaps there’s an end in sight.  I have been eating soft food, but drinking is still difficult. One small sip at a time. My appetite is gone, so I force myself to eat. David nags me enough to make me eat. I used to like him…….  I have a tip for all of you wanna-be chefs  out there: If you add coconut oil in with your kale when cooking, it’s much easier to scrape it into the garbag...

 I think it’s Thursday.  I am still talking to post this, so ignore all the stupid errors. David brought me home yesterday. I was released at 2:15. We drove straight to radiation from the hospital and got there at 3:15. The radiation oncologist reconfigured my target sites to move away from my esophagus. David brought me home after that. Climbing up four steps to get into the RV was pretty tricky, but David pulled me up. I brushed my teeth and took a shower and then went to take a nap. I slept for two hours. When I woke up, David help me go through all of the medicine they gave me. He made a chart and I think we have everything straight. I had seven prescriptions that we brought home.  Throat is still very sore, but I can swallow liquid now if I do it very slowly and in small amounts. I don’t want to drink and I’m not hungry, so it’s going to be very difficult to get down enough fluid. Dehydration and will send me back to the hospital, but it’s very hard. I am not going t...

 It’s Tuesday  and I still don’t know the date. I’m still just talking into my phone and it’s hard to get Siri to understand me sometimes. I have a deep sexy voice and sometimes it just seems to go away. My throat is very sore and it’s hard to keep the pain under control because I’m allergic to so many medication. They’re giving me morphine now with a Benadryl chaser, because it makes me itch. Morphine is not very effective on me, but right now it’s my only choice. I had the endoscopy yesterday morning. They took some biopsies and said I would have the results in three days. He took a bunch of pictures of my esophagus and it appears I am really photogenic. However, 50 to 60% of my esophagus is covered in ulcers. The radiation caused it. The entire left side of my esophagus is kind of ugly. All the doctors here, and my radiology oncologist, I’ve been discussing my situation. They presented lots of options, but I don’t like many of them. Postponing radiation is not a good idea, ...

 Today is Saturday . And I do not know the date. This post is probably going to be riddled with errors because I’m talking into my phone and it’s hard for me to see the print. I know I haven’t written since Wednesday, and a lot has happened. Last Saturday, I got a sore throat and it bothered me until Monday morning. It felt a little better Monday and Tuesday. Wednesday it came back and Thursday it was not pleasant. I got a cough and my sore throat kept me up most of Thursday night. I had a glass of orange juice Friday morning and then at noon I sat down to eat lunch. I took a sip of my drink and I could not swallow it. I was in a great deal of pain and could not eat or drink anything. I had radiation at 1 o’clock and when I laid down in the machine, my chest started to hurt. I made it through radiation and then Got a little lightheaded when I stood up. They put me in a wheelchair and took me next-door, and several nurses and doctors hovered over me. My radiology oncologist told me ...

  8/18/21 Today is Wednesday. David drove down yesterday and got here about 5 o’clock. He took me to radiation today, and that was sure nice because it was raining again. He can drop me off at the front door and I don’t have to walk from way out in the parking lot through the rain to the building. I’m feeling better than I was a few days ago, so it must’ve been nothing big. My sore throat is gone now, but I’m sure taking a lot of naps. I am turning a little pinker every day, and my skin is warm. It doesn’t feel like a sunburn to me. A sunburn feels hot on the outside and I feel the warmth coming from inside going out. It’s not too bad yet. David made me a beautiful handrail for our little stairway inside the RV. It’s gorgeous. He installed it today and it works wonderfully. He is so handy. He has taken out my garbage, vacuumed, shook the rugs, and he’s doing everything he can to help me. He made dinner last night, too. I do not know how long he is going to stay. He is going to take...

 My package – My package arrived in the mail today – only 7 days late. I got 2 packages, actually. One was mailed on Friday and it got here at the same time. I’m happy my tax dollars are hard at work within the postal system. Allow me to explain my recent purchases – if you’re uninterested, leave the blog now, because that’s all this addendum is going to refer to. I am now the proud owner of a couple of compression ‘vests’. Remember those old Playtex commercials advertising their ‘Playtex Long-Lined Living Bra’? I am now the owner of something similar, but definitely more evil. It’s a compression garment, remember? Except it’s on steroids. And it’s mostly associated with a corset. Sometimes it takes 2 people to get this thing on me – and it’s not a pretty sight. There should be a warning label that says ‘breathing may be optional’. I’m supposed to wear these every day – forever. They’re so becoming, they may become a fad. They’re $220 each, so perhaps not. Next, I received a compre...

  8/16/21 It’s Monday. Starting my third week of treatment today. I’ve already been to the clinic and back home again and it’s not even 10 AM yet. I had to go in to have my port flushed. I stopped in at radiation to see if they can get me in early, they are totally booked. So, I will go back for my 1 o’clock appointment. My package still has not arrived, but they keep texting me and telling me it’s out for delivery. It’s been out for delivery for the past three days. So, apparently the driver is lost. I may have to go find him. Poor guy. Perhaps, he needs to explore pursuing a different occupation.   I am sporting a deep, sexy voice this morning. My throat is still uncomfortable, but only on one side. I feel a little better today than yesterday, but that can be totally due to a good nights sleep last night.   I am not allowed to take vitamins, or supplements. The radiation department gave me instructions when I first began treatment that said they were a no-no.  So, ...

  8/15/21 Today is Sunday. I felt pretty good yesterday, so I met Jessica for lunch. It was very nice seeing her. After I left the restaurant, I drove to Courtney‘s house. I played with Warren, did my laundry, and had dinner with them. I drove back to the RV and got here in the nick of time. Another storm system rolled over and the lightning was constant. I was very tired after all off the activities, but I could not go to sleep last night. I was still awake at 4:30 AM. It was awful. And, to top it all off, around 10 PM last night, I got a sore throat. This is not good. I fell asleep in my recliner with my pressure sleeve on this morning. I am just going to take it easy today. I do not have a fever, so that much is good. Not feeling very perky, to say the least. I have an early morning appointment tomorrow to get my port flushed, and I have radiation in the afternoon.

  8/14/21 It’s Saturday morning now. I did not write yesterday. Yesterday sucked. I was still awake until at least 4 AM the night before, so I was so very tired all day long. I had two appointments yesterday: One for physical therapy, and then radiation. When I got home, I grabbed something to eat, and then took a nap. I keep getting notices about my package. It was supposed to be here last Tuesday, and I still don’t have it. Maybe today. Sigh. I’m supposed to have a compression sleeve and a compression glove. I needed to wear them all this week, but that sure didn’t happen. The surgeon came down to meet with me while I was in physical therapy yesterday to take a look at my elbow. Long story, short, no one knows what’s wrong with my elbow. It sure does keep me awake at night. Getting more painful every day. I went for a walk yesterday evening with a lady I met here at the park. She loaned me a whole bunch of DVDs to watch while I am here. I watched a movie last night. It was the fi...

  8/12/21 Today’s Thursday. It’s late afternoon, and I just got home for the day. I went to all my appointments today, and then stopped  at the grocery store on the way home. I barely made it back to the RV before today’s thunderstorm hit. The RV is rockin, once again. Thunder is booming and it’s pitch dark outside. The raindrops are huge today. It was a long day for me, and I got no nap, so I’m fixing to go lay down now. My packages still have not arrived. I just tracked them again, and apparently they are still in North Carolina at the same distribution center for the post office. They have been there for the past four days. Someone’s got their head up their Hiney, I guess. I have two appointments tomorrow, Friday the 13th. That does not bode well for me. I was told I had cancer on Friday the 13th. While I was in a parking lot. They called on my cell phone. No one invited me to come to the office so they could talk to me and explain things. No. Let’s just call and tell her o...

  8/11/21 It’s Wednesday. I slept better last night than I have in a very long time. I turned my phone off, too, so nothing woke me up, either. I am very hopeful that tonight proves the same. I went for radiation today, and it went just fine. I hadn’t been back at the RV very long, when my phone rang. It was a representative for my spinal stimulator. He said if I could meet him at MD Anderson, he could help me today. I thought that was wonderful and I asked him what time. He said, now. I grabbed my stuff and took off. The staff at the front door know me by name now. And they rotate shifts there. That’s pretty sad, isn’t it? And I have many, many weeks to go. We had a couple of storms blow over this afternoon, but not much rain with it. I had to drive home in rush-hour today, and that always frustrates me. Rush-hour traffic and I do not get along very well. So far, I have two appointments tomorrow. The first one is at 11 AM and it’s supposed to last for an hour and a half. Then I ha...

  8/10/21 It’s Tuesday afternoon. I got a few things accomplished today. I got my appointments on Tuesdays to be back to back, so I do not have to sit in the waiting room for an hour and a half between them. The pain doctor responded to my question about why the back stimulation  rep had not contacted me and he said I should hear from him shortly. The office called back and asked me if I’d heard from him. I said no. They said they were going to call his office again. So, at least someone is working on that and I may have an appointment soon. I contacted my surgeon with questions about my elbow. It has hurt since the day after surgery, so my radiation oncologist told me to ask her about it. They have been in touch with my physical therapist and together they will figure out something by Friday. We’ll see. I also got an appointment with an ophthalmologist at the main hospital at the end of this month. I have a little bumps growing inside my right eyelid, and they are  extre...

  8/9/21 It’s Monday afternoon and I’ve already come and gone from my radiation appointment today. David left around noon today to head back to Flint. It was sure nice having him here for the weekend. I’m afraid he was awfully bored while he was here, though. He asked me to go out to eat, but I just didn’t feel like it. He asked if I wanted to go to the movies, but I didn’t feel like that either. I’m just not much of a social butterfly these days. Just achy and tired, mostly. Yesterday was just one of those days when I was sick and tired of being sick and tired. Again. It’s been a little over 10 months since I found the cancer. I know the end is in sight and I only have 5 1/2 more weeks of treatment to go, but time is passing ever so slowly these days. When I get home, I need to have my port removed, so I’m not quite finished in those 5 1/2 weeks. It’ll be a full year that I’ve been sick by the time I get home. I hope I get my strength back after that and we can resume a semi-norma...

  8/8/21 It’s Sunday afternoon. David drove down Friday night about 10:00 pm and he will go back home tomorrow noon. He helped me shop online, after we called all over town, for an elbow brace. We found one online and it was delivered today. This will be my first night with it and I am very excited.  I did all of my laundry today here in the park laundromat while David played in the pool. Warren came to visit us today and he had lots of fun swimming. He even helped me fold clothes.  David is making dinner for us tonight, so I do not have to cook. It’s been awfully hot here, so I don’t go out of the RV very much. We had a storm come over yesterday for a while, but it didn’t rain very much.  I take a nap every day, except for the days that I take two naps. So very tired. I do my exercises to keep my shoulder limber, religiously. I got sick last night from 3 to 4 PM, but I feel OK today. I hate it when people act all intellectual, when they’ve never even seen one of his...

  8/6/21 Today was the Friday from Hell. I got up this morning and did my exercises, wore my pressure sleeve, got gas on the way to MD Anderson, and I made it there in plenty of time for my radiation appointment. That part of the day went OK. Everything went downhill from there. Fatigue hit me when I got home, so I took a nap and set my alarm so that I could wake up in time for my physical therapy appointment at 2:30 PM. I did not want to get back up, but I headed to the hospital. When I got there, the receptionist said my appointment had been cancelled. I asked her who cancelled it, and she had no idea. No messages, no phone calls, no nothing. They just cancelled it. I was so upset. She was supposed to answer my questions about my spinal stimulator, my torso pressure suit, and now I’ve hurt my ankle somehow. I thought I would get some answers today, but that certainly did not happen. When I came out of the hospital, it started to rain. I researched splints for my elbow last night,...

  8/5/21 It’s Thursday. It rained a good deal of the day today, so at least it cooled it down a little bit here. I got a call from MD Anderson asking me if I could come in early today. There was a big pile up on I 10, so several people couldn’t make it to the appointments on time. I don’t have to take the freeway to get there, so I took off. I did not know until I got there, that this was going to be a longer session. I was in the same machine, but I did some extra scans today. My breathing is getting a little bit better, staying in the box, but it’s still challenging. I reckon in a couple more weeks, I will be a pro. I slept better last night, but I’m pretty tired today. Go figure. I have two appointments tomorrow, and I’m still not sure if I’m going to attempt to drive home this weekend, or not. I just fired myself from cleaning this RV. I don’t like my attitude, and I got caught drinking on the job. When we were young, we snuck out of the house to go to parties. Now that we’re o...

  8/4/21 Today is Wednesday. I didn’t write last night because I had company. Jessica drove down to spend the night with me last night and the day today. She left late this afternoon when I had to go for my radiation. Today is her 38th birthday. It was so very nice to have her here. Usually takes me no more than 20 minutes to get home from MD Anderson. Yesterday, it took me over an hour. All but two of the stop lights on Highway six, were out. At 4:30 PM. Rush-hour. It was horrible. I do not know how people do this all the time. I’m going to be here for two months and I can’t wait to get out. I met a couple of people here at the RV park, and they are very nice. It’s nice to know a couple of people by their first names, at least.  I tried to count how many times I need to hold my breath during a radiation session, but I got lost. I think it’s eight or 10. The machines turn around me a lot more times than that, but those don’t always need me to hold my breath. I hold it anywhere...

  8/2/21 It’s Monday. I had a busy day today, along with a little excitement. Or fear. Yeah, it was fear. Let’s start at the beginning. I had bloodwork first thing this morning. I failed again. My white count did not go up at all and I was afraid they wouldn’t let me have radiation today. However, my second appointment was with my oncologist and he had already called the radiation oncologist and they discussed my case. Since a few of my other numbers went up a little bit, they decided to give me a pass. I barely made it. But, he said I could have radiation this afternoon. He also went over my CAT scan results from my test last Wednesday, and he said there is no evidence of cancer. I do have a lot of nodules, however, and they’re going to continue to monitor them. I’m pretty sure that’s what he said. I sort of quit listening after he said there was no evidence of cancer. Talk about relief! He scheduled two appointments for them to flush my port and said to have my oncologist back in...

  8/1/21 It’s Sunday, and the first day of August. I didn’t write yesterday, but I spent the afternoon/evening at Courtney‘s house. It sure was nice. I have three appointments tomorrow, so my day is pretty full. My dry run in the radiation department was Friday, and my first one with the real dose will be tomorrow afternoon. I’ll be in that same weird machine trying to hold my breath and keep it in the zone. I have blood work in the morning at 8:15 AM, then I see my oncologist at 9:15. He’s the one going to give me the results of my CAT scan last Wednesday. I still don’t know how I’m going to find out if I can actually have radiation tomorrow because my blood count was too low the last time I had it checked. Perhaps they’re waiting till tomorrow to see for sure. I just go day by day. I don’t have much choice otherwise. The lightning/thunder/wind/rain storm that we had on Friday night really filled up the lake. The water was getting pretty close to the RV, but it has since gone down...