Patty's epic adventure

  7/30/21 It’s Friday, and my day started early. I was at MD Anderson by 7 AM for my bloodwork. I flunked again. I have got to start studying harder for those tests. My white blood count only went up .3, and I won’t know until Monday if that’s good enough to start radiation. I went back this afternoon for a radiation session, but without the radiation. It was a dry run. They marked up my body again, so now I have red and blue sharpie marks all over my torso. It looks like a three-year-old was coloring on my body. I was there about an hour and a half for this appointment. They put me in the machine, put my mask on me, and strapped me down. There were laser lights on the ceiling and I had to watch them the entire time. There was a green rectangle box and about 4 feet away from that box there was a blue line. There was a yellow line I could see when I was breathing. I had to hold my breath, and that yellow line would move toward the green rectangle. When the yellow line reached the in...

  7/28/21 It’s Thursday. I went to physical therapy this morning. I was scheduled for an hour, but they kept me there for two hours. Part of the time they were torturing me, but I made it through. I actually did feel better by the time I left. My left elbow has been giving me grief ever since I had surgery on January 7. It will ease up, then be a booger, then ease up, then the cycle starts over again. The last couple of days have been pretty painful. She asked me about it and I told her my elbow was giving me grief. She took one look at it and knew exactly what was wrong. I am cording. My lymph node system is rebelling and it’s making everything bunch up inside. It  wakes me up all night long, so I don’t get a good nights sleep. So, this evening I made a homemade thingamajig to keep my arm mostly straight at night. I took a towel and wrapped it around my arm, and then held it in place with duct tape. Duct tape fixes everything, so it’s going to help fix my arm tonight. We’ll s...

  7/27/21 It’s Wednesday. I had trouble getting to sleep last night, so it made for a rather tiresome day today. I did get a 20 minute nap in this afternoon, and that helped a lot. I went to MD Anderson this morning for a CAT scan. I left here at 10 AM and got back at 1:30 PM. It was supposed to be a routine CAT scan of my lungs to see if the nodules have grown or not. They said they couldn’t access my port unless it had been put in at MD Anderson. I had already discussed accessing my port with them last week when I was there for a different appointment. They said that would be no problem. Well, they asked for my card that I keep in my wallet, that has all the information about my port. I gave that to them and then they had to contact the doctor that put it in last February 8 when I was still in Tyler. Then they had to do a chest x-ray to make sure it was in the right place. Then, I eventually had my CAT scan. So, my two hour appointment, grew. What an ordeal. Nothing is easy. Noth...

  7/27/21 It’s Tuesday afternoon. I got down to Houston yesterday evening, turned on the RV air conditioner, and began to unpack my car. It must’ve been 140° inside the coach. Sweat was pouring off of me. Not dripping, pouring. The bedroom air conditioner was cooling off that room the fastest, so that’s where I started unpacking. I got up at 7 AM this morning so I could use my pressure sleeve for an hour before I got ready for my first appointment today. It was a physical therapy appointment, but I don’t think I made much headway there. My next appointment was for obtaining compression garments for my lymphedema, but I didn’t make much headway there, either. I have a 10:30 AM appointment tomorrow morning. It’s supposed to last for two hours. It’s a CAT scan with contrast. They will access my port for this one. Nothing to eat before my appointment, but I have to drink lots of icky stuff when I get there. This one will be to look at the nodules in my lungs. It will be great fun, I’m ...

  7/26/21 It’s Monday and I’ve had a nice weekend at home. I’m going to drive back to Houston later this afternoon. They’ve added a bunch of new appointments for this week, so I most certainly will not be bored. David is going to stay home and take care of things here. There’s no reason for him to spend all day in an RV and be bored to death. I will leave early enough so that I can make a couple of stops on my way down, and still get there before dark. I got sick Saturday night, late. I still don’t know what happened. No new medicine, nothing. But, David had to help me to bed and then I laid there pretty sick for quite a while. I felt fine the next morning, though. If you can’t laugh at yourself, let me do it. My body is now a temple: ancient and crumbling, probably cursed and/or haunted.

  7/23/21 It’s Friday! And I just got home! Was a long drive today, and traffic was horrible, but it’s good to be here. I can stay until Monday afternoon. I have morning appointments next Tuesday, so I have to be back. My calendar really filled up today as MD Anderson added on appointments. I will be driving my car back to Houston. David is going to stay here and take care of the house. I will be healed enough to drive myself around. I only have a couple of more days to be cautious of my biopsy site. Speaking of biopsy, the doctor called me on our way home this afternoon to tell me to have a nice weekend because my biopsies were all benign! She wanted to make sure I knew that, so I could have a nice weekend at home. Good news! I finally got some good news. She also mentioned that my blood counts were too low. She will not start radiation unless they go up. So, I’m scheduled for more bloodwork on Friday. If they haven’t risen enough by then, they will have to give me something to ra...

  7/23/21 Today is Friday. It’s 7:30 AM and I am sitting in a recliner with my arm pressure machine on. As soon as I’m done, I will start to pack. I have a doctor appointment at 11:20 AM and David will take me. As soon as my appointment is over, we are going to head home. 220 miles. It will be good to be home again. Right now, I do not have another appointment until Tuesday morning at 11 AM, so I won’t be coming back to Houston until at least Monday night. Of course, all that could change if I get a message in my chart. I never know from one day to the next. My appointment this morning is with the pain doctor. They’re hoping he can help me manage my pain. I’m allergic to opioids, and my spinal stimulator isn’t helping at all these days. So, I have high hopes for today. Courtney and Warren came to visit yesterday afternoon and David played with them in the pool. I stayed in the RV and took a nap, but I had a nice visit with Courtney, especially. I think David is going to pick up War...

  7/22/21 Today is Thursday I didn’t post yesterday, so now I’m all confused. I had physical therapy yesterday morning, first thing. I think I’m on the right track for getting my torso pressure suit. She was very helpful, but it’s still gonna take some more time. I have a lot of new exercises to do, and they take up a good portion of my day. The only reason I’m down here is to get well, so I consider it just part of my job. I mostly rested the of the rest of the day and then in the evening, David and I went for a walk. It was cooler and we walked around the campground quite a bit. There are lots of empty spots with picnic tables and benches, so I can stop and sit whenever I need to. So far, I do not have any appointments today. I think Courtney and Warren will come out to visit us this afternoon. We will pack up a little bit, because I only have one appointment tomorrow, and then we will head home. My appointment is not until 11:30 AM, so we will not get an early start, but that’s ...

  7/20/21 Today is Tuesday. Busy day. Sleep was elusive last night and I’m really tired this afternoon. In fact, it’s gonna be nap time as soon as I finish this post. David took me to MD Anderson at 9:00 am. I saw the radiology oncologist and had blood work done. I flunked that test again. Rats. I got tattooed today for radiation. I thought it was gonna be fake tattoos, but I was wrong. They’re real and permanent. After tattoos, I got marked with a red Sharpie. They gave me my very own Sharpie to use if I see my lines fading. The simulation for radiation was very involved.  They had to take the biopsy bandage off before they could begin. They had to use some sort of solvent because the tape was stuck so well. Ok, that hurt a lot.  They made a mask for my face from a piece of plastic. It was very stiff until they put it in an oven and got it so hot it became very pliant. Then they placed it over my face and it cooled there. It was hot. Hoo-Boy.  Did I mention it was h...

  Later Back at the RV now. Had COVID test. 4 biopsies. Marker inserted. 3 mammograms. Bandages on. Ice packs stay off and on for 24 hours. No shower for 24 hours. David is taking good care of me. 

  7/19/21 Today is Monday. I was up at 6:30 am yesterday and started packing the RV. I couldn’t sleep, so figured I’d get started with my day. I got very, very tired and had to rest a lot.  Seemed like I would never finish. We left at 3:00 and got to Houston at 7:00 pm. We were all set up and starting dinner by 8:00. I was pretty sore last night, so went to bed early.  MD Anderson called me this morning with a new schedule. COVID test at 2:15 pm, biopsy at 3:00. Biopsy should take 1:45 minutes. I see the oncology radiologist tomorrow morning at 9:00 and was scheduled for tattoos at 10:00, but the second appointment is on hold until the biopsy results come back. If it’s malignant, the oncologist and surgeon will discuss the options with radiology and then me. I still have PT at 1:00 tomorrow afternoon.  Sounds like fun. I can hardly wait. 

  7/17/21 Today is Saturday.  I've calmed down a bit today, but am still going to call the therapy office on Monday.  No, I don't need anger management.  People just need to stop pissing me off.   Tomorrow would have been my mom's 99th birthday and we will be traveling to Houston to spend the next 7 weeks.  Well, I will.  David won't be there the whole time.  We cleaned the RV and packed all dang day.  Plum wore me out.  I have to keep sitting down and resting, so it makes for pretty slow going.  Will finish packing tomorrow and head out mid-afternoon, I reckon. I have some good news today.  My nose is no longer bleeding and my fingernails are growing out.  I can see the healthy nail coming in behind the yellow, cracking, icky nails.  My hair is growing, but not evenly.  I have patches of thicker hair and then a bald spot.  It's totally white - no gray at all.  The sore on my tongue is nearly gone....

  7/16/21 Today is Friday.  Not a great day.  Have you ever gotten so mad that you didn't dare open your mouth in fear of what might come out?  That was my morning.  I had an appointment at physical therapy that I'd waited 5 solid weeks for.  After numerous phone calls, texts, and emails, I finally got in.  Everyone knew why I wanted the appointment.  I waited the appropriate length of time required by Medicare using my arm pressure sleeve, so that I could get the torso portion sent to me.  At least, that was according to the company that sells them and my physical therapist.  Well, my therapist was wrong.  Apparently, she didn't know what she was talking about.  She was supposed to be seeing me this whole time and taking measurements.  She told me months ago that I was released and didn't need to see her any longer.  She told me today that she'd made a mistake and that I'd have to 'start over' and begin seeing her so...

  7/15/21 Today is Thursday. I didn’t write yesterday, because I didn’t have much news. Today is different. I have more news than I really want to relate, but since this is a blog, I’m going to tell all. David and I did select an RV park yesterday. It’s called Highway 6 RV resort. It’s about 12 minutes from the hospital and a half an hour from Courtney‘s house. It’s gated and very nice, so I will feel safe there when I’m alone. We will be taking the RV down this Sunday and will spend the next seven weeks in Houston. David will take me down and spend the first week, then we will come home on the weekend. I will probably just take my car back at that point and plan on coming home on the weekends. We had a bad storm while we were in Houston and our yard and pool are a total wreck. Rocking chairs, lawn furniture, and a whole bunch of limbs were in the pool. The pool was not running because we lost power for so long that it was probably just running at night instead of during the day. T...

 7 /13/21 Today’s Tuesday. This day started out very badly. I got up before the sun, after a horrible nights sleep. I got in my car and joined rush-hour traffic in Houston to get to my 7:30 AM appointment this morning. I made it to MD Anderson with three minutes to spare. I thought everything was going great. However, when I got to the receptionist, she said there was no appointment for me. I showed her my appointment in my chart on my phone. I showed her the email reminding me of my appointment. Then, I showed her the text reminding me of my appointment. She made some calls and found that the physical therapist called my house this morning to cancel my appointment. She did not take into consideration that I live 220 miles away. No one called my cell phone, texted me, emailed me, put a message on my chart. Nothing. I actually felt sorry for the receptionist. Was not her fault. There are no more appointments this week, so I got screwed. I have an appointment with someone else next T...

  7/12/21 It is Monday night and we are in Houston. We’ve only been here a couple of days and I already got my days of the week mixed up. We drove up yesterday and checked into the Ballard house. It’s very nice and they even served us dinner last night. I had an appointment at MD Anderson this morning with my surgeon. It was a follow up appointment. She made lots of other appointments for me, so my week is filling up fast. After my appointment, David and I went to check out some RV parks in the area. I have one more to check out tomorrow. After I check out that one, will have to pick one. We had some lunch and then drove over to Courtney’s house this afternoon. We stayed there till this evening and had dinner with her. I came back to the Ballard house alone. It’s the first time I’ve driven, and in Houston, if that doesn’t be at all. David, Courtney and Warren are going to Schlitterbahn in Galveston tomorrow. They will spend the day down there. I had a last minute appointment schedu...

  7/10/21 It's Saturday.  I packed a lot of stuff today, so I don't leave tomorrow without needed paperwork or something.  I have to take a big suitcase because I need to pack my arm pressure robot sleeve machine.  It's big.  I reckon it will go with me wherever I go from now on.  That's another question for the surgeon Monday morning at my follow-up appointment.  I have several questions for her, as a matter of fact.  Thursday morning, I will have my tests/scans.  I don't know when I will get results.  There's another question.  The following week, we go back down for more tests/scans and to get all my tattoos for radiation.  That will be a lengthy appointment. The plan is to stay at the Ballard House in Katy for 2 nights and with Courtney for 2 nights.  We will be home on Thursday, late afternoon.  That's the plan, anyway.  I never really know till I get there because they tend to add stuff to my schedule, unan...

  9/9/21 Today is Friday.  I have some good news today!  I have some brand new, soft, fuzzy eyebrows.  They're very light colored, so they're hard to see, but they're there!  And...... drum roll, please....... I have some brand new baby eyelashes coming in!  My hair is starting to come back, too.  Pretty soon I won't scare small children at first sight.  This is all pretty exciting because my oncologist said not to expect this for months.  I'm definitely an over-achiever.  But, my whole life, that was one thing I was very good at - growing hair.  So, now that skill has been put to the test and is coming back strong. My gut is making me miserable today, but that fact has been over-shadowed by my new hair growth.  That's all the news I have to share today, but I was bursting at the seams to get that new info out.  Hooray! I ordered a new GPS especially for seniors on Amazon today.  I'm excited for it to arrive.  It...

  7/8/21 It's Thursday, I think.  I'm getting so mixed up these day.  I want my old brain back!  My doctor referred me to Fit Steps and I went this morning to one in Bullard.  Since it's only 4 miles away, and a straight line in the country, I decided to drive myself.  I did pretty well, but it confirmed my decision not to drive to Tyler yet.  Not quite ready for that yet...  The therapist gave me several exercises I can do at home and stretch bands, etc., to assist.  I did pretty well, but it was disheartening to realize all the things I used to do, that still remain out of reach.  I know it's pretty soon after chemo, so will try to be patient.  Patience is my middle name, right?  Not. I've told many people that we're going to MD Anderson on Sunday for early morning appointments on Monday.  I also told them we were coming home on Wednesday afternoon.  That's wrong, and I just realized that about an hour ago.  I ...

  7/6/21 It's Tuesday and I'm finally feeling closer to normal.  My holiday was awesome.  Just awesome.  We had lots of friends and family over for a bar-b-q, swim party, and then fireworks that were out of this world.  We've never had a display quite like the one we had on Sunday night.  It's was marvelous.  The finale was a box that weighed 55 lbs. and had 260 tubes inside.  I didn't swim, or cook, or move lawn furniture, set up tables, etc.  I sat and supervised.  I was available for questions and I got to visit with most of our guests.  I gave it my best shot, but yesterday, as soon as the kids left, I went to bed.  Slept till 5:30 p.m.  I was wiped.  I would do it all again, too.  I had such a good time. We had special celebration cakes and well wishers and lots of smiles.  I am still amazed on a regular basis, the love I feel from family and friends.  I am SO blessed.  And.... no one had to v...

  7/3/21 Today is Saturday.  I was a bit puny the past few days, and didn't feel like posting.  Sorry.  I went to my oncologist yesterday and she put me on some different antibiotics.  Unfortunately, I now have an intestinal infection.  Cramping badly.  Not pleasant at all.  I can begin to drink a little alcohol now, so that was music to my ears.  My fingernails should start to heal in about 4 months.  My hair will come back when it's good and ready, but it might take 9-12 months since they gave me some nasty stuff these past 5 months.  I'm a bit dehydrated and my appetite is gone.  I'm tired, but I always am after my chemo.  I'm a bit weak and unsteady, but my girls are here this weekend, so they're a big help. I was advised to go to MD Anderson in Houston for radiation, after all.  She said my radiation treatment would be 'quite extensive and involved', and my family would probably feel better if I was down there....