Sunday

 Feeling a bit queasy today, not sure why. Might have to pass on the stretching.

This past week was a good one. Monday my radiation was at 12:15, so that was nice, getting it out of the way early.  Wednesday was my early morning (well, 10:45) appt down in NSB. And BEST news ever: the CT scan showed no progression or worsening of my lung infection. So combined with my lack of worrisome symptoms, the doc said, "I don't see any reason to put you on antibiotics, unless your symptoms worsen. I'll see you in 6 months."

What! I was so excited. First, no antibiotics--yay!!  and second, a six-month followup, not a three-month. Wow. I can't remember the last time a doc said that to me. I've been doing 3-month visits for over 2 years now.  She was smiling, and I was smiling, and I felt better than I had in months.

Of course J only had questions about my ability to walk; so I am to start with 5 minutes a day, for a week, then 10 minutes a day, then 10 minutes twice a day. As long as I can, I can increase the amount daily, and stop if I feel short of breath. The tricky part is determining when to do this. I am not a morning person, so that means evening. But J is not an evening person. We'll figure it out.

So that was a great appt. I have my next appt with her in December, the first day of winter. Seems so far away.

We did a few errands, and then decided to eat at a restaurant (gasp!). We went to Wayback Burger, because we'd just dropped off some return items at UPS and it was close by. It was actually fairly good, although very messy. Both J and I had sticker shock-- $32 for a chicken BLT, a chili hot dog, a shake, and some iced tea. Yeah, we won't be going back.

In the afternoon we headed to radiation, and I saw the NP there afterwards. She reminded me that next Wednesday is my last day. I wanted to say, "Already?" but changed my mind. She also said that Friday would be a longer appt due to the need for some extra imaging.

After that we picked up our grocery order at Walmart, and then finally went home.

Thursday J's phone went kablooey. After a long conversation with CC, he was told to be at Target at 3, for them to reset it. We headed out for radiation, and after that went to Target. While he was working with the CC techs, I wandered the store. It has been completely remodeled since I was last there, and so it took me at least an hour to find everything--I wanted 8 items, that was all. Because I was so tired, and wasn't used to walking so long I was exhausted fairly soon.

When I was done (and had given up on finding a couple of things), I ended up in the suddenly-long check out lane. Thunder was pounding overhead, and everyone was anxious to get done and back to their cars before the heavens opened. 

J's repair/fix took longer than expected, and he met me at the check-out lane as I was sliding my card. We left, and hurried out to the car, where I discovered there was only a bag of kitty litter in my cart, and my other two bags were gone.

We had to go back inside, and the rain then started.  It turned out the bags had disappeared;  someone had walked away with them in their cart. I ended up (after the cashier told me to) having to use my receipt to find every item all over again, and then take it all back to the cashier, who walked us over to customer service and explained what happened. 

I was embarrassed, and so, so tired, and angry at whoever walked away with my stuff, and dreading having to walk out in the rain again, and then driving home. It was very nice of Target to work with me, and not charge me again, and I was so appreciative. But oh, I was so tired. It's one of the only times I wanted to use my "cancer card", and have someone else do it all for me.

Well, we got out to the car and J drove in the worst rainstorm I can ever remember. It was pouring so hard we could barely see, plus the thunder and the lightning. Of course we were almost out of gas, so we had to find a gas station, and J got out of the car to do the dirty work. Despite being under a canopy, he got completely soaked.

 As we were coming up to Aldi, he remembered I had very little wine, and insisted on stopping there to get me a bottle. They were out of the brand I normally get there, and so he picked up something I've never tried, along with a box of his favorite cookies, of course.

We made it home; the dogs were not at all interested in going outside. I then remembered MissS was supposed to come for dinner, but I texted her and said "Stay home! it's terrible out here,"...   and she had forgotten herself. I don't even remember what we had for dinner, but it was simple, as we were both drained.

Friday was my doc's birthday, so I sent him a text.  Radiation was just terrible: for the first time it was completely painful. It of course was longer than usual because of needing extra imaging, but something about the positioning was much worse. My left arm kept falling asleep, over and over. I had a feeling of absolutely needing to move, and yet I was not allowed to. I could feel tears rolling down my face, and trying to force myself to calm down and not panic, to focus on something else. 

By the time they were done, it had taken over 20 minutes longer than usual. I got back out to the car, where J was waiting for me. He could see immediately that I was hurting, and he drove us home. He pampered me when we got home, tucking me in a blanket, and bringing me tea. I watched movies. 

Our AC turned off, we arranged for a repairman to come out, and then 3 hours later it turned back on, all by itself. Weird.

Of course it was raining again.

Saturday morning was our Meeting, wonderfully supportive as usual. Then we stopped at HD for J to pick up some rollers, and UPS to return a fishing rod to J's friend (just under $50 to ship--YIKES). 

And then headed to Sis' house, where we had a delightful lunch, and talked and got caught up. J and Dad played chess, Sis and I played Scrabble, and BIL mowed the lawns. We left, taking the long way home, which is always so pretty.

Rained again last night, major wind and thunder and lightning. 

Today J is mopping floors, and painting the curio cabinet, and noting the big difference after having put up a curtain over the kitchen pass-through, to block the sun and heat. 

Okay, he is now on his Zoom call, and speaking so loudly I cannot hear....

TYG

 

Sunday

 This is a quiet day for both of us. It's technically, officially, Father's Day. Yesterday is when we celebrated though, by having Dad and Sis and BIL all here for a late lunch. J made French Dip, and I made a salad, and Sis brought cookies for dessert. It was yummy, except that the smell of meat cooking upset my sister' sense of smell and she had to leave the room. This had not occurred to me, or J, so we feel badly about this, but J has decided now to use the grill outside for any meat-cooking in the future when they are here. 

I felt badly because I forgot to get a Father's Day card for J, and for Dad: so I used a blank card to go with Dad's gift. I just wrote my own sentiment, even though I usually think I can't write, or  articulate what I am feeling. In this case, it was how proud I am to be his daughter, and how grateful I am that I have a father like him.

I also felt badly because I didn't have a gift for J. I was planning to stop in at a liquor store, but one, I have never been alone this week to be able to do this, and two, we are on the last few days before payday and I didn't have the money in the checking account anyway, unless I moved money from savings. I really am trying not to do that. 

Previously we have not made a big deal out of Father's or Mother's Day. Naturally, I should have realized he would definitely feel more strongly about this Father's Day, having lost his youngest son only 4 months ago. Sigh.  

Well, we are getting through this extra emotional day.  I am making cookies later today, and making dinner tonight. He says he doesn't need anything extra from me, except my love... so that helps me.

I have just felt like a failure this week, for some reason. Nothing in particular happened, I've just felt on edge, frustrated, sad. It always passes. I've had a mild headache, and my ears are ringing more intensely. I knew it was from that medication I am now again on for the neuropathy. I knew it. I remember telling my neurologist a few years ago that my ears were ringing (after having started this same med for headache prevention). And she said calmly, and logically, "Well, E, you know how many things can cause tinnitus...it's not necessarily the med."  

Well, Doc, in this case it was. And it's now been confirmed. So it's a trade-off as usual: do I continue this for the neuropathy despite the tinnitus? Hell yes.  Annoying, but there's no help for it now.

Let's see, what else?

Monday I had Radiation early in the day to accommodate someone's schedule, so it was at 10:30am. Which was fine. Nice to be done early in the day. I was however too tired to later accompany J to his doc's office, where he was fitted with the 14day Holter monitor, (which was actually a little patch applied to his upper chest with sticky stuff. Somehow it was supposed to last for two weeks). 

Tuesday I again had an early appt, my Herceptin infusion at 10:30. I was whisked in, and since  no labs were required I was just able to choose my lounge chair, and settle in for my half-hour infusion. Done by 11:30,  and home, and then raced out for my radiation at 1:45. 

Wednesday I finally heard back from Halifax about my horrible experience there in March. Someone named Kristi in Pt Relations called, and listened to my story. I tried not to be confrontational, or unpleasant. Her attitude was clearly of someone who was expecting me to be that way. She eventually calmed down as I used my deferential tone combined with assertiveness to get my concern across. I didn't even know I'd had the option of  disputing my bill because of the treatment I received, and I told her that. (I have dropped the idea of getting lawyers involved.)

She listened and asked questions,  took notes, and said she'd check the records to see if any mention was made of this person's level of experience. Then she would need to review it with "the Board", and they would notify me via snail mail of their decision. Not sure exactly what that means. But I have no other plans: I really just wanted someone to listen, respond to my experience, and express some damn sympathy, maybe even apologize. I would like not to have to pay the co-pay, but they sure got enough from my insurance company: they paid over $4500, and my copay is supposed to be $150. 

After radiation that day I saw the doc again, and he seemed pleased with how everything is going: my skin isn't burning too much, my weight is good (he told me not to try to lose weight during this time, but just to focus on protein and lots of water). My weight has been exactly the same for the past month, so I'm doing all right. 

Afterwards the nurse and I discovered we'd worked at FHCP for two years together, just across the hall from each other. So we knew many of the same people, and exchanged work gossip/news, and shock at each others' experiences. That was cool, actually. Despite my intense dislike of the evil DrD, I really did enjoy my job, and my co-workers. 

I do miss it, sometimes. It's nicer to be retired, of course, but I wish I wasn't sick. Still, I am more than halfway through radiation now. Soon my only treatment will be the infusions every three weeks, and I can then move on to treatment for the lung infection. I have an appt Wednesday morning with the ID doc down in New Smyrna.

Later that day, MissS and Kit came for what was supposed to be swimming and dinner. It was storming again, so we ended up with no pool time, and a dinner: the chicken turned out not as well as hoped; a bit dry, and it took a lot longer than we'd planned. We have not managed to provide one tasty meal yet, for Kit.

The next day they left after work to drive over to Ft Myers and Sanibel and Captiva for a nice little vacation in a different area of FL. I had my radiation. J's new replacement phone arrived, and we decided to put off the set-up until the next day.

Which we did, on Friday. Despite the basic simplicity of setting up a new phone these days, there were still glitches. He called our provider and spent more time on the phone with them. By the end of the day it was working, and I think he is very pleased; we both finally have the same model, and so I can help more when he runs into trouble. Honestly I think my phone, our phone, is pretty easy, and pretty user-friendly. 

He has chosen a ring tone which is terrible, however: it is like nails scratching on  a blackboard to me. I tried discreetly to mention this, but since it's very similar to the old dial phone tone I think that is comforting to him. It's very harsh, though.

Well, all that matters is that he is happy. 

Saturday we went to the Meeting, and it was one of the smallest groups I can remember. Still, always good. 

We rushed home afterwards to get ready for the early Father's Day lunch, but they arrived a half hour early! I wasn't dressed, had no scarf on my head, and hadn't wrapped Dad's present or written the card.... but fortunately we'd finished vacuuming, and setting up the kitchen table, and I'd made the salad. 

It all went well, and we had a great time. Plenty of wine and beer was consumed, presents were a success, although again there was no swimming, and everyone was gone by 3:30.  After cleaning up and starting the dishwasher we collapsed.  J napped for 2 hours, and I watched an old Gable and Loy movie-- wonderful. 

I've also been struggling with my embroidery, not pleased with the end results. So I dug out my needlework storage box and found a cross-stitch kit I'd bought probably 20 years ago, maybe even longer. It's of chickadees on a pine branch. My favorite birds. It looks terribly complicated and I'm scared to death to try this one, but maybe switching to a different needlework type will give me a brain boost. It says its experience level is "easy". We'll see.

This week: tomorrow I have radiation at 12:15. Wednesday is my appt with DrReba, my infectious disease doc, where I'll learn about the CT scan. 

Good news is I have passed my out-of-pocket expense limit for my insurance, and so now everything is "free" to me. I have no more co-pays, and all my meds don't cost me a thing anymore for the rest of the year. 

I'm thinking I should call my GI doc to followup on those issues, and my ophthalmologist for another eye exam, as I'm getting close to needing more contacts. I won't need to pay a copay for any tests or medical procedures for either one. 

It feels like a lazy Sunday, but I still have a lot to do. Thankfully my energy level is steadily improving. If only my back didn't hurt so much after standing for a while that would be nice. That's partially why I am doing the stretching exercises. I'm also hoping to work up to more strenuous exercises inside, soon. 

TYG

Sunday

 This was a busy week, it felt like. 

Monday was my sons' birthdays. I heard from one of them, thanking me for the $10 I sent. I carefully did not ask what he'd spent it on.

Tuesday was J's grandson Mathias' 4th birthday; although I reminded him at around 9 am, he didn't remember to call them until 12 hours later. Which was when he'd already gone to bed, completely exhausted and half asleep. I was in the living room doing a puzzle, and suddenly I heard "oh, sh*t!" from down the hall, and then J stumbling down the hall to find his phone...he'd totally forgotten. But it was only 6 pm there, so he got to leave a message with them. Of course he hasn't heard from V in a long time.

Wednesday was the death day anniversary of both mom and Gramma. This is always a bittersweet feeling. 

I had my radiation as always at 1:45, and was done by 2:15 because I saw the doc afterwards; then we drove all the way back south to hit the Walmart for groceries, then turned around and drove almost all the way back north again to go to Twin Lakes for my CT scan at 3:30. By the time we got home we were both tired, and it had started to rain.

Thursday my new cookware arrived. We'd noticed once again that our "nonstick" cookware was definitely sticking, and worse, it was giving off this terrible odor when we used it. I insisted to J I could smell something burning, but he can't smell or taste anything, so he was on the verge of frustration, not exactly thinking I was hallucinating but it was clear something wasn't right. 

So I did some more research. I think this is the third set of cookware we've replaced since moving here. J is hard on cookware: despite the care directions specifically saying Hand wash, or Do not use metal utensils, or Do not scrape the bottom of the pan with a fork, or Do not use the harsh side of the sponge, etc; despite all this, he absolutely does. It is so annoying to watch him!  

Yes, I get that he is/was responsible for all the cooking, cleaning, planning and preparing of meals. Also the shopping. I know he is extremely anxious to provide good nutritious meals. But in his haste and concern to take care of me, he doesn't really care about the "little things" like proper care of pots and pans, and so we have had 3 sets of non-stick cookware. Sigh. 

(After the first few times I caught him and reminded him, he was so defensive about it and was so tired that he couldn't really hear me without thinking I was criticizing him...so I stopped reminding him. When it was time to replace the old set after only a year, I calmly mentioned that it was probably because they weren't taken care of properly. He was quiet. And when the new set arrived, I made sure to comment on the hand-washing part, and then he insisted on reading the instructions himself, out loud to both of us. Me, acting like this was all new information. He, acting like he had never heard of such care being needed ever before. )

Anyway, this set is so pretty. Of all colors, it is an off-white. I never would have chosen this color, but it's not offered in any other choice. It is highly rated, and had no red flags in reading the reviews.

 I've used it twice so far because yes, I am feeling better enough to do more of "my share" of the chores, cooking, cleaning, etc. I made breakfast one morning, and I made a homemade soup on Friday night. Both of those came out perfectly.

With the set came a silicone spatula... and I now must obtain more silicone tools since I/we cannot use the metal ones. I love the feel of it, and it worked beautifully.

Thursday night, we cleaned up and drove down to Stavro's to meet the Family. Bro and SIL were back from VT for a week, and this was the only time we could all manage a get-together.  MissS and Kit were there, holding a table for us all. Then we arrived, then Bro and SIL, and finally Dad and Sis. We all ordered and then everyone started talking. It was wonderful to see Bro and SIL, and hear about their kitchen project; and to hear more info on the house sale. 

Poor J had once again forgotten his hearing aids, despite my reminding him. So he couldn't hear everything, which kept him quiet for a good while. Sis was tired so she was quiet, and MissS and Kit were fairly quiet too. Still it was a good time. Food was all good: pizzas, garlic knots and garlic bread, hoagies.  We didn't leave til almost 8, much later than I'd expected. 

sFriday was a quiet day, and other than my radiation, we didn't do anything. 

And Saturday we went to my Meeting, and as always completely felt so much better afterwards.  Then we dropped off our old cookware set at Goodwill, and J found a new/used pair of sandals. He is very happy with how they fit.

J has been working outside on the pool (the pool crawler is not quite working correctly)  and inside on the sun room, and he did mowing and yard work.  A couple of the days he was much more tired than usual, and slept more. He's on his second round of antibiotics. Tomorrow he goes to the cardio to be fitted for the 2 week monitor. That is going to be a pain. 

Plus it's been suddenly more hot and humid: summer is here. Supposed to be over 90 degrees every day this week. Ugh.  But at least I can get in the pool. 

I'm grateful.  TYG

 

Thursday

 As of today, there are 471 emojis, and 144 comments on my photo in the cancer support group. Unbelievable. I'm so overwhelmed. 

Sunday

 New numbers: 421, and 133. Holy cow!!  421 people gave my photo an emoji (smile, love, or care), and 133 have made actual comments. Took the time to comment on my photo of me wearing the wig for the first time. Stunning, and humbling.

The potluck here for Memorial Day was great. I was tired, but that worked out. It was a quiet afternoon. Good food, some people used the pool, and all was done by around 6. MissS did the majority of the cleaning up, which was so incredibly helpful. J and I collapsed on the sofa afterwards, and could barely talk. 

Monday, MissS came over alone and did her laundry, and we talked, and watched a bit of TV after she cut  and "styled" my wig while I was wearing it... It looks so much better now!

Tuesday was a big day: Dad's house officially was sold to the new buyers. It was sort of a sad day; we'd been following Bro's email updates on various aspects of the sale. Then, the one announcing the signing of the contract...

Tuesday was also the day I took my last-for-a-month swim. At the time I was under the impression that there would be no pool for me while undergoing radiation.  

So Wednesday afternoon I reported to the Radiation center and had what I thought was a treatment. However they learned at the end that my doctor wasn't in the building, so they couldn't officially get his approval/signature/sign-off on this treatment. But it was a good practice session. 

I re-learned I have a tendency to cough when lying down and that is not allowed. ("Oh, no-no honey, you can't move at all!  And don't move your arm to cover your mouth--just cough into the air if you have to.")  Okay...  so now I drink some cough suppressant when I'm on my way to radiation, and that helps so much to prevent me from coughing.

Thursday and Friday were my official treatments. I saw the doc after Thursday's session, and asked if it was allowed to get in the pool, and he said, "Oh sure, no problem. Just take a shower afterwards and rinse off all the chlorine."  WHAT!! All this time I've been agonizing over the entire month I couldn't get in the pool... serves me right. Why do I worry so much...

Wednesday morning also we'd gone to J's PCP. What an interesting character: he's a slender, middle-aged Asian man, with long black and gray hair, and he was wearing it loose that day. Very bright, too... After an extensive discussion of all his symptoms, and after J provided a urine sample, it turned out he had a UTI!  So he was given an antibiotic for that. Also given a new rx for meclizine for the vertigo, and a prescription/referral for some "vestibular therapy" for the vertigo also, and a chest xray  for the crackles heard in one lung. And he has to stop his cholesterol med, to test out the doc's theory that it's causing J's aching joints and bones. Apparently that is one of the side effects of this med.  And he was also given the OK for the heart monitor.J:

And finally he was reminded/ordered to do more water-drinking, and stretching every morning. It was an incredible visit. I'm impressed with this doc. (Plus he listens to me, when I have a comment, or correct J's impressions: "Do you notice any wheezing?" J: "No." Me: "Yes, he definitely does have some, worse at night." Which led directly to the discovery of the crackles. )

Saturday we went to my Meeting, where I led. I wore my other wig, and no one said a word. It's too bloody hot to wear though; I'm not sure I will continue with it during the summer months. I'll probably just continue with my scarves and caps.

After the Meeting we drove up to Sis', and J played chess with Dad, while she put up some family  pictures of Dad's. I "helped" by handing her things, and discussing where to put things up. I was mainly moral support. But it all looks wonderful to see his pictures up; looks more home-y. 

It was a pretty quiet week, thankfully. This coming week I have a CT scan on Wednesday, and radiation every day at 1:45.

I'm grateful things are improving.

TYG