Sunday

 These weeks just fly by. Plans have now changed re J's proposed visit to his son.

Unfortunately, daughter V sent her dad a lengthy email setting out the "rules" for his visit. Utterly ridiculous:  he  (J!) may not have any alcohol or medical pot, and his closest friends Mal and Brian are not to be around.  This little bombshell was sent "with love and respect" from V. She requested that he not respond for 24 hours, to consider all aspects.

We both had the same reaction--who died and left her boss?? What gives her the right to dictate these "rules"? And so on. He was livid, and caught completely off guard.  She has been doing such a great job with managing Z's schedule, accompanying him to all Dr visits, providing meals or assistance if needed. (Z's wife is recovering from her torn Achilles tendon, and also has to work full time. )

J first spoke to Z again, to clarify whether these were his rules/requests, and how he felt about them. Long conversation later, the trip is off: not only are these not Z's rules, he was shocked that V sent this. He also does not want his dad boarding an airplane and visiting him, especially at his age. He was quite firm about this: saying he wanted to be left alone to prepare himself for this next several rounds. He was "sick of people" coming over, always in his house. He appreciated the help, but enough was enough. Basically that was it.

So J has to once again respect Z's wishes, and not go to his son.   He's sad about this, and grieving. But once again, they have agreed that he'll visit if the treatment regimen does not appear to be working after a few cycles.

Then J emailed his cousin to get her thoughts on how to respond to V's Rules. She was also outraged on his behalf. She sent J a few scorching and thoughtful paragraphs on how she felt, and eventually J modified that email and added some thoughts of his own, sending this off to V . He has not heard one word from her since Wednesday when he sent this. 

Of course, now he feels she is processing thoughts on his response, and mad at him, therefore not speaking to him. Oh, the drama. He feels badly for any hurt, and angry that she felt she had the right to set these things up, and now isn't responding.  But damn-- you just can't treat people that way!

 So the heat is off him, as far as planning a trip, and how I would have managed. That's all now in the future.  He's terribly relieved, and yet sorrowful that he doesn't get to see his child/man.  Z is staying closer in touch now, so that helps. He took part in a marathon relay this weekend and sent photos of himself on the road. He looks wonderful; he is anticipating  a serious weight loss as a result of the upcoming treatment,  so he has purposefully gained plenty of weight. At 6'4" he must weigh 230 or so, and doesn't look fat, just husky. (He also has  a mustache, which looks ridiculous...)

In other news, J is now working on painting the lower cabinets. They are all stacked in the work room,  and with any luck they will all dry, get a second coat, that will dry, and then we paint the back frame of the cabinets, then wait for that to dry. Final touches will be reinstalling the doors with soft close hinges, and placing new hardware to match the uppers.   

I ended up having to order the remaining hardware online, because  Home Depot is completely out. I found I had a balance on a gift card I received as a rebate for my contacts, and I used that to pay for the hardware. I'm very thankful I remembered that!

MissS came for pool and dinner on Wednesday, which was fun. She went to Jacksonville this weekend to be a guest at a wedding of a family member of her...bf? friend? companion?  I'm looking forward to hearing about this; she had a fair amount of anxiety over this, not only because of the significance of meeting his parents, but the social pressure of attending a huge wedding as a guest, and having to make conversation, socialize, etc.  She's coming home today, and taking tomorrow off work, so maybe I can see her tomorrow.

Meanwhile, Sis and BIL came for dinner last night; she brought her yummy potato salad, and I made a green salad, and we had burgers. It's been several weeks since we've seen each other, so it was good to get caught up. 

Bro and SIL have invited all of us family members to a LaborDay get together next weekend, which I am looking forward to. "End of summer" already ! Of course, it's not the end of summer here in FL, but it's a marker for "fall" activities, and preparations for the major holidays coming up.

Since Bro and SIL didn't invite BIL's daughter or son, Sis will have a get together too, at her house that weekend, with the adult kids--all 3 of them-- and us four.  It will all be good. 

J and I learned that our house insurance carrier, UPC, is one of the insurers pulling out of covering homeowners here in Fl, and other states in the south. I personally am dreading the  change to a new carrier, and the anticipated increase. I've heard so many horror stories of the costs to insure a home, due to the hurricanes. It's always in the news here.  I hate to think what our new mortgage payment will be. It's gone up twice in 6 years, and now it'll be increasing again. Sigh. I'm so thankful for Dad's help with our monthly expenses. What a godsend...

The rest of the week was involved with playing with a smoothie recipe Lydia sent for J to increase his protein, and J's tinkering with it to make it palatable for me (incorporating the disgusting new prescription powder I use for my stomach /digestive issues).  J also did the yardwork, and had a couple of days of extreme fatigue, during which he rested, complaining bitterly how he hated this lack of energy (welcome to my world, I told him...). 

We did another online grocery order at Walmart, which makes life so much easier. We can avoid the temptation for impulse buys, which really helps.

I did my stretching videos every day, and helped clean house, washed the inside windows, jumped in the pool every day, and in the afternoons I embroidered and listened/watched a mini-series. 

We had a hell of a rainstorm last night right after Sis and BIL arrived; by my rain gauge we got almost 3 inches of rain, with major thunder. It had all mainly died away toward the end of their visit, which made their drive home easier. We desperately need the rain so it's all good.  One foot steps into the pool,  and the whole thing ripples and overflows to the edges of the enclosure.  More rain is expected today, so we might not be able to get in today. Pool temps are in the mid 80s--very refreshing on these humid days.

That about does it.  Oh, yes: on Saturday at the Meeting, we sat with a dear friend as usual. After the meeting he pulled us aside, setting one hand on each of our shoulders, and told us how thankful he was that both of us are here faithfully every week, that we always share something very meaningful, and that we help to make this such a rewarding meeting.  He referred to us as a "delightful couple", and that was so nice to hear!  I've known him for more than 6 years now, and that meant a lot to me. J was very touched too, as he has only been accompanying me for the past 18months or so.  It really helped.

OK. One errand to run, and then back home to kick back, maybe even a nap.

TYG

Sunday

 Again, very busy week. And busy morning already. It's almost 1130 and I won't be able to finish this before MissS gets here.

I woke to discover J had moved the now-painted bookcase out to the kitchen, unloaded the old hutch (so the piled-high counters and table were all invisible), and moved it out of the way. The bookcase is now living there. It looks so much better. Much more in proportion to the rest of the room. I love it.

So my job was to replace the shelf liners on the new "pantry", and then organize everything on it. I also had done my stretching while he was on the phone with his daughter, getting caught up on info re Z.

J's stepdaughter Amelia and her husband, and their two girls (8 and 5) visited us Friday afternoon. He hadn't seen them in several years; they live back in Newport, but Mike's family lives about an hour from here in Cape Canaveral. They came for a vacation before Mike and the girls start school--he is a 5th grade teacher. (I had the impression that while he loves Fl, having grown up here, and would love to move back, he definitely does not want to be a teacher here. I don't blame him. Teaching as a profession here is...extremely challenging especially for elementary and middle schools.)

Anyway it turned out to be a great visit. They are good people; friendly, low-key, patient with the kids, who spent most of their time in the pool.  MissS came over too, for moral support, thankfully.  We'd bought a couple of big ol' pool toys, and a big ball. We also replaced the pool noodles which are disintegrating. 

We all had pizza later in the afternoon, and they left around 7. Everyone was exhausted, but happy. The girls are completely adorable. I fell in love with them.

The only terrible thing was when V called to let us know that Zeke had been in a car accident Thursday night. He's okay physically, and just did some damage to the two parked cars he hit and the truck he was driving. Worse, it turned out he'd been drinking heavily, something he absolutely never does. 

This news was devastating. Shortly after V's call, Z himself called and spoke to his dad, sobbing and almost out of his mind with fear, and confusion, and grief and anger. He's only 32, and facing the likelihood of a young death.  It turns out his recent scan did not show any improvement, so they are moving on to a much more serious, intensive treatment. 

He will be admitted to the ICU for five days, being given injections/infusions through his carotid artery twice daily. Then he goes home to recover for two weeks. Then he is readmitted to the ICU, and the infusions start again. Three more cycles continue, then they will reassess.

Apparently there is a 40% chance of surviving this. But his doc told him other patients of his have gone through this and if they survived, they never had a recurrence of their cancer. Now, we don't know if all of those were melanoma patients, but still. 

And so J is going to go back to Oregon for a visit. He will probably plan to arrive just before Z is discharged from the ICU, so that he will be the main care-giver while Z recovers. J is so terribly worried about Z, and torn again about whether to leave me. Of course he must, and fortunately I am well enough that I can manage while he is gone. It's a bit scary to think of, but there's definitely no reason or need for him to stay here. His son needs him now. And J needs his son.

He will buy a  one-way ticket, and once he's on scene, he'll be better able to determine how long he is needed. Apparently this is a brutal treatment. Z is understandably scared to death...and so is the family.  J will stay as long as needed. I'm expecting between 2-4 weeks, maybe longer.

So there was a  lot of discussion,  plans, tears, shared grief, and trying to boost each other up while Amelia and Mike were here. J married her mom when she was3 or 4, so she's known him as a step-dad all her life. There's a good strong bond there, and of course Z is her half-brother.  She adores him. 

As they were leaving, Mike shared that he felt it had been an amazing visit, and that it had been very special and moving, for all of us to share this new information. Everyone gave hugs all around, and I'm so glad they were here. I had been very anxious about this, but of course that anxiety was unfounded. 

During the week, J also took Wednesday morning to remove the old toilet in the big bathroom, and then install the new one. He had absolutely no problems, and it looks fabulous.  The toilet itself was a little more spendy than we'd planned, but it was completely worth it. It's an ADA-approved set up, and now the entire bathroom is set for when we "age in place" as the horrible saying goes.  Grab bars on the shower wall, too. We do need to refinish the actual tub, and that might be a project he takes on later this year.

My youngest granddaughter turned 6 on Friday; seeing  the 5year old that day gave me a good insight on how Nick and Amber are dealing with Crimson. From what I've seen, it seems Crimson inherited Nick's  ADHD gene disorder, and so I know the incredible amount of patience that requires. 

I sent her a bug identification book, made for children. She is heavily interested in bugs, cats, snakes, lizards, and is entering first grade in a few weeks. Incredible. 

Meanwhile Gabby, my oldest grand, will be 15 on Sept 4th.  I so wish they weren't so far away.

Well, MissS is on her way, and I need to wrap this up.

I'm going to miss J terribly, but I do have my entire family here. I'll be fine.

TYG

Sunday

 Sunday, morning.  I re-read my last entry and cannot figure out why it ended so suddenly. I barely remember last Sunday, or if there was anything unusual. But I must have been interrupted, because I also forgot to hit the "publish" button (which Dad reminded me of in an email, fortunately).  So here we are with another week behind us.

MissS came over last weekend, and will be here later today, too. It may rain, or not. Friday night it finally, finally!  rained a lot--we got almost two inches in the night. It was wonderful to hear: thunder and lightning, and the rain. What a relief.

Saturday morning we noticed the drop in temps, and that was welcome, with especially low humidity. Of course it didn't last long, but we enjoyed it.  The Meeting was wonderful. 

Except for some news a very dear friend R shared with me. Earlier that week at another 12-step meeting he used to attend (thank God he doesn't anymore), an agitated former member of that group burst in and shot his ex's current boyfriend  (a member) in the head, and took the ex-girlfriend (also a member) as a hostage while the other members escaped safely.  After the police and SWAT teams arrived, he refused to respond to them, and eventually shot the ex-gf and then  himself. So all three were dead. 

This was an absolute shocker. A Meeting is almost the one place we feel safe; it's like a church. In fact, our meeting is held in a church. To think of someone charging in with a gun, bent on destroying three lives--well, it's mind-boggling.   I don't know if this member had expressed concerns about the break-up to his meeting friends, or what.  There is very little information available, due to the anonymity concerns.

My friend R knew many of the people in there, and told me that one witness/friend had said to  him later, "I do not know the person who did this--I have never ever seen *Shooter*  as someone who was capable of doing this.." 

That whole Meeting is now dealing with such trauma. I'd be completely scared at the idea of returning to that meeting, although logically I know those shootings can happen anywhere, anytime. (Isn't that an awful, and sad,  truth these days....)

Well.  In other news.  

Monday morning at 4 am, J woke up with excruciating pain on the right side of his neck. He'd had a massage on Friday, and believes it is somehow related to this. However, he spent most of Sunday afternoon on his computer, hunched over and typing in his rapid hunt-and-peck manner, composing his journal entries for his Family history.  I believe this is what contributed to it mainly.

He was in such pain that I was awakened also. He could hardly move without yelping. This actually  continued throughout the day (and Tuesday, and Wednesday).   It was hurting him so much that he insisted we go to the Urgent Care, something he usually avoids at all costs. So we drove over and waited, waited, etc. Eventually  they told him the same thing I had said: warmth or heat on the site, gentle stretching as often as he could, rest, and Tylenol 3 times daily. Oh, and he was given a prescription for a muscle relaxer to take also, three times a day.

We stopped at Walgreens on the way home for the Tylenol, and he asked for sherbet also. That was a positive sign!   He was rueful and somewhat embarrassed that they'd told him the same thing I had, but I didn't say "I told you so". 

We went home, and he moved very slowly  the rest of that day; in fact he slept most of the day, with the heating pad and the Tylenol and muscle relaxer. It was a slow and lazy day for me too; my empathy syndrome gave me a sore neck also, so I had a legit excuse to be still and enjoy my movies and embroidery, occasionally tiptoeing in to check on him. 

Naturally all work/chores/errands/plans were on hold. Not until Thursday did he start to move less guardedly, and his mood improved dramatically. I think it was that day he spent several hours, literally, on the phone trying to get some assistance from numerous agencies.

He'd been told by the specialty pharmacy where he gets the Creon that since he was now in the "donut hole" with his Medicare Advantage plan, meaning that he would have to cough up the $476 plus change for the Creon, instead of the $160 something we'd paid last month. He was in shock and angry,  and refused to give up. He called everywhere, spending significant amounts of time on hold, waiting to speak to someone. He had his papers and forms and applications all spread out across this table. 

We'd seen the GI doc that morning at the crack of dawn 8:30, so we didn't have a wait at all. This time everything went smoothly. He is now free to add back non-GF  foods, and increase the Creon to 3 pills with every meal. This will be a lifelong medication for him. Damn. But he has more freedom to add or subtract his dosage, to see what works for him. The doc was very relieved this is working well for him. He was sympathetic about the cost, but glad J was going to pursue other avenues.

And eventually he did find a Florida company which helps fixed income people who can't afford their meds. This company is a godsend. They will be providing it direct from the manufacturer at $49.95 a month.  Is this a chunk of money? You bet, $50 a month is huge. But of course it's necessary, so we'll adjust. 

And it's a hell of a lot better than the $160-something, which was a hell of a lot better than the $476-something his insurance was going to provide it for.  Obtaining prescription meds is such a racket.   However, considering most of his other meds are completely paid for every month, this is definitely okay. (Except now he's in the donut hole, so we'll find out how much we now have to pay for his 4 other meds.)

In fact he was so thrilled and pleased with this company's customer service that he asked them if Pradaxa was on their list of covered meds. He then filled out yet another application, and is waiting to hear if they will cover this med of his also. 

Not much else happened this week. MissS came over after work one day, and soaked in the pool for awhile. She didn't stay for dinner though. 

Murphy continues his slow decline. He moves slower, and patiently plods at my feet when I move around the house. After I've settled in my chair he stands there watching me for  a few minutes until he's sure I'm down for a while, and then sinks down with a big sigh. He is such a sweetheart. My heart will shatter into a thousand pieces when he  can't go on.   

Ok. I can't think about that.

This week I have a hair cut scheduled for Wednesday, and J has a dr appt, I think with his dermatologist. Fiona's expensive prescription cat food needed renewing, and since it has been over a year, she might need to be seen first before they renew it. We'll find out this week.

J has started the painting of the book case, which will eventually replace the huge hutch in the kitchen. I have had absolutely no responses to the ad I placed, so it will go out to the curb when it's time.  After this the toilet will be replaced, and then the  lower cabinets' painting job  will be started.

 J is so tired today, and so depleted that he feels guilty and angry about the amount of work that has to be done, vs the amount of energy he has. It's hard to make him see that this is his body's response to the chronic illness; and that it will fluctuate daily. 

I worry too, because we do  have an awful lot to get done, and I can't do most of it. At the same time I don't want him to see this worry of mine, as he will feel worse. Arghh. 

Well, one day at a time.

Must close now and go do my stretching.  (This becomes easier, slowly. Soon I will be able to add "workouts" in addition to the stretching videos. It's been eleven months since I got sick. Talk about a slow recovery!)

TYG

Sunday

 Sunday morning. Simply amazing how each day flies by.

Last Sunday, MissS and I went sofa shopping, and that was a blast. She drove, and we wandered around RoomsToGo for a good hour. She checked comfort levels, firmness of cushions, color, looks over all (style), durability, all the things that go into choosing a major purchase like a sofa. She has a hard time with decisions, which is no problem with me; we wandered, and sat on several sofas, debating pros and cons. She asked great questions of the salesman, and  while she didn't select one at the time, later she did. She had to think about it very carefully.  But later in the afternoon at our house, she decided to go ahead and purchase this. She called and spoke to the salesman, and arranged for delivery.

And Friday morning (at 7:40 in the morning!!)  the delivery truck came and now she has a beautiful new sofa. Sis and BIL and me and J were all there too, because we'd agreed to be waiting for them that morning.  The delivery people surprised the hell out of all of us, being so early. 

After that excitement, which had involved me waking and taking my meds early as usual, but then instead of going back to sleep, I had to stay up, shower, and quickly grab all the things we needed for what we thought was going to be a long morning waiting at her house.  So the quick change of plans after they showed up so early was mind-boggling, and yet worked out perfectly.

The rest of the earlier week was spent by J putting up each cabinet door with the new soft-close hinges, or the older hinges. Then installing the new hardware (handles). Then re-placing the glass in the four cabinets. Then touching up paint spots.  This took most of the week, every morning. Today we/he will be installing the cabinets' "bumpers", the little dots that break the crash of door onto wall. 

In the afternoons, after his nap, he worked on his memoirs for the Family. Or sat outside trying to build up his tolerance to the humidity level, which has been miserable. No rain here, despite the forecasts of rain in the afternoon. Nothing.  The dryness is making certain of our plants droop within a day if they aren't watered. So this is now a daily chore.

One afternoon, I went out to prune the garden's tomato plants, since they have stopped producing. I got sidetracked with the pruning shears and wandered around outside in the various gardens trying to clean up the overgrown mass of shrubbery. I got a good pile ready for J to take to the curb. 

I reached into the sweet almond bush (which is easily 10 feet high and that much around, thickly packed with green leaves and delicate branches), and as I reached up to clip a branch, there was a little squirrel, frozen in place, upright along the main trunk. I stopped moving instantly, and just looked at him. I had a feeling something was wrong, right away. He didn't move. I slowly moved away, apologizing for scaring him. 

Sometimes our squirrels use the sweet almond bush as a jumping off place to reach the enclosure, which then leads to the treeline across the back of the yard. So I thought this little guy just hadn't finished his journey.  I went back inside and grabbed my phone, opening the camera as I returned. He hadn't moved. I took a couple of photos and then figured I would leave him alone to see if he would then  un-freeze and race to the safety of the fence. 

J came outside to tell me about the phone call from V , which was bringing J up to date on Zeke's cancer treatments.  As he was talking, I led him along to the tree, staying inside the enclosure. He stopped talking,  and re-directed to the squirrel. 

We ended up bringing him a bit of water, and some seed, which our squirrels dearly love. He moved slightly, but enough to show that he had a large abrasion, bare of fur, along his right shoulder area. He was using his right arm to hold on, and climb a bit, but it was clear this was a serious injury. However, it wasn't actively bleeding, wasn't red so it wasn't infected, nothing oozing. He was just moving slowly.  He watched us cautiously as we tried not to look at him, but we spent the next half hour in the pool. Watching him surreptitiously.

Well, by nightfall he hadn't left.  But during the night he managed to escape, or something got him. He was gone. I did get a couple of photos, but unless you know a squirrel is in the bush, you wouldn't see him. 

So that was exciting.