Patty's epic adventure

  9/29/21 This is Wednesday. It’s been almost a week since I posted. I’ve been getting some texts and phone calls asking how I am, so I should post. I’m healing up nicely. I still use the creams for my burns and I’m still tired. I saw an orthopedic surgeon today about my elbow. It’s been hurting since surgery January 6. No one can seem to figure out what’s wrong. All the x-rays are normal, so next I’m going to have an MRI. I went to town today to get new glasses with the prescription that I got from MD Anderson. Apparently, it’s for a different Patricia. Yes, they gave me someone else’s prescription, so she probably has mine. I got a phone call today from Houston from the place I got my compression garments. The last thing was on back order and they mailed it to the RV park in Houston, after I gave them my home address. I got a certified letter in the mail today from the hospital up here. It said they made an error, apparently, and sent all my medical records to somewhere else. The...

  9/24/21 Today is Friday. I went to my oncologist this morning and promptly flunked my blood work test. At least my white blood count is not in the extreme danger zone any longer. I’ve still got a ways to go, but I will begin to heal pretty soon. I got all my questions answered, and she took me off one medicine. That was the good news. Bad news is: she put me on two more medicines. One of them is an estrogen blocker, and I knew she was going to put me on that one. I will be on it for the next 10 years. My body is not going to like it very much, either. However, the side effects are a lot better than getting cancer again. I have to go see an orthopedic surgeon about the pain in my elbow, that no one can figure out what it is. I got the OK to travel, as long as I am careful. My cough is destined to last another several months as my esophagus heals. I thought I would be better by now, but I was way off the target.  I don’t have to go see her again until late December, unless som...

  9/22/21 Today is Wednesday. David took me to the hospital this morning. We left the house at 7:15 AM and my quick in and out surgery, turned into something a bit more lengthy. they told me over the phone when they were setting this thing up that it would only take an hour. Boy, were they wrong. I was there for five hours. There was no problem removing the port, however. I was told wrong over the phone. They had a bit of trouble getting me to sleep. They underestimated my ability to stay awake under the influence of drugs. They had to give me more pina coladas three times. The nurses would say something and I would say, what? My head was turned to the left and I was covered with a drape, so I could see nothing. I didn’t know if they were talking to me or to themselves. Every time I would say “what?”, they would say “are you still awake!?!” Uh, Yep! Then, they would hit me with more juice in my IV.  I spent the entire afternoon asleep in my bed at home. I didn’t get very much ...

  9/21/21 Today is Tuesday. I didn’t get out of bed till 10:30 this morning. I was awake for about an hour, then I decided I needed a nap. The doorbell rang at 1 o’clock and woke me up. It was the lady tech-support person for my new pressure suit. Boy, was it every nice to see her! She taught me how to use my new suit and I felt a lot better after my first session. I’m going to like this thing. It’s huge, though. Not going to be great to travel with, but it is what it is. I got my paperwork ready for my appointment in the morning. I have to be at the main hospital at 7:45 AM to have my port removed. They need a list of all my current medication. So, I had to make a new one. I am currently on 23 different medications. It’s freaking unbelievable. As my throat heals, though, I’ll be able to take some of those off the list. As my burns heal, I’ll be able to get rid of a few more. It will be nice to have this port out. It has turned sideways and it hurts whenever I get near it. You can ...

  9/20/21 Boy, I really got my dates mixed up the last few days. I am quite sure today is the 20th, though. It’s Monday. I’m sure of that, also. The representative for my pressure  suit called me this morning and she will be out here tomorrow afternoon to fit me. My suit arrived yesterday. I stayed awake a good part of the day yesterday, but went to bed at 8 PM last night. I didn’t wake up until 8 AM this morning. One of my friends came over to help me with my medicine yesterday. It was a little overwhelming, but she was an enormous help. I have so much medicine to keep track of, and when I brought it all into the house from the RV, it simply covered the entire kitchen table. I needed a system to keep track of all of it, and to get it off the kitchen table so we can eat. When my esophagus finally heals, I won’t need near so much medicine. I can hardly wait till that day rolls around.  I have no energy any longer. I get so tired. My joints ache and my knees buckle at the m...

  9/18/21 This is Sunday.  I’m in a much better mood today.  Perhaps it has something to do with the fact that I have slept 31 out of the last 36 hours. Yes, I was only awake for 5 hours yesterday and that’s because David woke me up to eat. I had weird dreams about my sister, Phyllis, and was talking to her all day. Then I remembered that yesterday was her wedding anniversary. She got married 55 years ago.  Maybe that’s what was happening.  Who knows? I still miss her terribly and she’s been gone 6-1/2 years. My nails are healing up pretty well, but one big toenail hasn’t come back yet.  I’m afraid I still might lose it. It’s ugly. My hair follicles are healing, too, but I still need to put the salve on twice a day. I coat my throat 4 times a day, too. It will sure be nice when that finally heals. I truly don’t know how I drove home last Thursday. I couldn’t drive around the block now. That was a small miracle.  Well, crap, I just fell asleep writing t...

  9/18/21 Today is Saturday. I didn’t write yesterday, probably because it was so uneventful. I woke up at 11 AM and was back in bed before 1 o’clock. I pretty much slept the day away. So far, today has started out approximately the same as yesterday. I woke up at 10:30 AM and I’m currently in my recliner using my arm pressure machine. I’m so sleepy, I’m about to fall asleep again. It seems like all I do is sleep, take my medicine, put the burn cream on, repeat. I get my port out on Wednesday and I see my oncologist in Tyler on Friday. She is going to put me on more medicine. I will be on an estrogen blocker for the next 10 years, if I make it that long. It’s going to weaken my bones and I have osteopenia already. The radiation is weakening my bones, also. This does not bode well.  I do not want to end  up looking like one of those little old ladies who’s all bent over, or worse yet, stuck in a wheelchair. I have to have another bone density test as soon as they can book ...

  9/16/21 Today is Thursday and I’m home!!! David took me out to eat last night at Pappadeaux.  OMG, was it ever good.  I savored every bite.  He secretly ordered a special key lime pie for dessert to celebrate my last day. That made me cry.   We left Houston at 10:30 this morning in separate vehicles. He towed the 5th wheel and I drove my car.  We had a contingency plan if I couldn’t make it home, but I think I wanted it so bad that I just made it happen. I had to stop only once, but I was totally spent by the time I pulled into the garage. I unloaded my purse and medicine and had to lay down. For just a minute.  My next door neighbor saw I was home and came over and found me on the couch.  I remember seeing her, but not much else.  I had left everything open in garage.  I woke up 1-1/2 hours later.  My car was completely loaded with stuff and she emptied the whole thing and then shut the door and left. When I woke up, David was ho...

  9/15/21 Today is Wednesday.  I had 4 appointments today and left the hospital at 4:00.  Driving back to the RV felt a little weird.  It was my last trip back to the RV from there. My. Last. Trip.  I rang the bell today amongst cheers from the techs and the waiting room. It was surreal. I was torn between laughing and crying, and before I made it back to the RV, I was doing both.  Often at the same time. My blood counts are still not great, but good enough to get me out of here.  I will come back here the first week of December to have scans done. They will be able to tell me then if they got all my cancer. I can’t have them before that because they have to wait till I heal enough for them to maul me again. I have several appointments before then for other stuff, so it seems I can’t truly escape this place. I think they like me.

  9/13/21 It’s Monday morning. I did not write over the weekend. Courtney and Warren came to visit again and we had a good time with them, but mostly I just slept. I’ve been very tired. It’s no surprise, because they told me I would be. My burns are burning and now I’m taking pain pills in addition to the fentanyl patch. I will go to radiation today at 1 PM. After that, I have two more days of radiation and doctor visits. I want to go home on Thursday. Several rigs have moved out this morning. We are watching the storm develop in the gulf, and will make our mind up this afternoon. I’ve already found several RV parks on the north side of Houston that have empty spaces. Schools around us are either letting out early today or are closed completely. All I know is, I did not want to be sitting in an RV when a whopper of a storm hits. If we move north, I will only have to drive down for treatments for two days. Of course, that’s if MD Anderson doesn’t close down, also. If they do, we wil...

  9/10//21 It’s Friday! Boy am I glad I’m done with this week. They changed my radiation time today to 8:45 AM. David took me and everything went smoothly. We were back at the RV by 9:30 AM. I went upstairs to take a nap. I woke up at 1 PM. My phone rang a few times and woke me up, so it was probably only a three hour nap. David went to Courtney‘s this afternoon and is bringing Warren back here this evening to spend the night with us. After he left, I made myself a sandwich. That made me tired, so I sat down in my recliner to rest for a bit. I fell asleep and had another two hour nap. I woke up in time to take some more medicine, went back to my recliner, and fell asleep again. Y’all are lucky I’m awake long enough to post anything. I was awake long enough to put clean sheets on the bed this afternoon and I’m going to make myself dinner soon. David is gone, so I can have liver tonight. He told me to air out the place before he got home. What a boob. Who doesn’t like liver? Yum, Yum...

  9/9/21 Today is Thursday and it wasn’t much better than yesterday. We are staying in the Hwy 6 RV Resort. I had a package mailed to the office. There is no box number. Only the folks living here have box numbers.  All other mail simply goes to the office. The post office says they delivered my package 2 days ago to “the box”.  It took most of today to figure out that they delivered it to box #6.  You have no idea what I went through just to figure that out. You just can’t fix stupid.  The tech that does the trunk pump screwed up the paperwork and when I called today to check on it, she said she’ll have to send it to my house because it won’t be shipped in time. I will have to get the rep out of Dallas to come fit it for me. She comes to Tyler one day a week. By appointment only. I’ve been waiting 5 months for this thing, so what’s a few more weeks, right? Wait - the day gets better and better. I have learned my pain doctor’s nurse cannot read. That must be the...

  9/8/21 This is Wednesday. I started out the day going to the ophthalmologist. He cauterized the tear ducts in the bottom of both of my eyes. He said he was going to numb my eyes with drops. They are not as effective as an injection, but he said that was rather uncomfortable and I would probably prefer the drops. That’s a yes, sir. He waited a minute, then put in a second set of drops.  He told me it would be relatively painless. Relatively? Well, it was relatively painless for him, but not so much for me. It felt somewhat like a tiny hot poker being jammed in my eye, over and over. After he finished the left eye, he began on the right. I was dreading it. At that point, I wish I had someone’s hand to hold. David was in the waiting room and the doctor asked him if he would like to come back with me. However, David had quickly and politely declined the offer. So, I mustered up my inner strength and they proceeded to do my right eye. It turned out to be a tad bit worse than my l...

  9/7/21 Today is Tuesday. I’m back in Houston. Unwillingly. When I was home, I went into the kitchen to look at the calendar. It was on July. What happened to August?!? I missed August. Poop.  David took me downtown this morning for my appointment at the main hospital. Echocardiogram. About 40 minutes into the ordeal, he says he can’t see well enough. Says I need to have an IV inserted and have a difinity,or something like that. I asked him if it involved candy, but he said no. There’s no V. I said I didn’t want it then. He looked at me and said “really?”  Gads. People are way too serious these days. He said a nurse would come in, put the IV in and then put in a bubble. Yeah, a bubble. Ok. He said it was like dye, but wouldn’t go to my organs like dye. It would dissipate through my breathing. So, that’s what we did. 1/2 way through, he said he still couldn’t see well enough and he called the nurse to put in another bubble. So, we did it again. He finished up and I left....

 9/6/21 This is Labor Day.  My youngest daughter's 33rd birthday.  How appropriate.  David and I came home on Friday, mid-day.  Now it's Monday afternoon and we have to go back to the Hell Hole that millions of people actually call home.  I had a wonderful weekend and several friends came over to visit.  I think that was the best part.  No, the best part was having Courtney, Ryan, and 5 year old Warren, spend the weekend with us.  It was all good.  I just don't want to go back to Houston.  I'm simply dreading it.  I want to stay home. The drive here was a bit difficult the last 2 hours, so I hope going back is a bit easier.  A friend gave me a little ditty when she came to visit.  It said:  "After every storm there's a rainbow, no mater how long it takes to show up."  So, I'm trusting that ditty. It was all a good weekend with the exception of yesterday morning.  I had a bit of a hard time with my esoph...

  9/2/21 It’s Thursday. I got my radiation appointment switched tomorrow to 8 AM. So, after my treatment, David and I are going to head home. It’s 225 miles. I’m anxious to go home this weekend. We can stay until Monday evening. I haven’t been home in a ong time. I only have two more weeks of treatment and then I can go home permanently. Then, 2 to 3 weeks to heal, and this whole ordeal should be over. Cross your fingers, everyone. I think it’s going to end up almost exactly one year since this nightmare began.  Something monumental occurred this morning…… I shaved my lower legs. I actually had enough hair to shave. Pretty soon, I’m going to have to use shampoo on my head, also. I’m not quite there yet though.  I slept almost all day yesterday. I was just so very tired. The drugs I’m taking contribute to my sleepiness, too. It’s not all of the fault of radiation. The radiation is irritating my hair follicles on my chest. It’s covered with tiny bumps and it itches. I am bu...