Sunday

 We both slept very well, him in the bed, sprawled all over it, and me on the sofa. This is the first night he has not woken up once, so he is feeling better. I did wake up twice, but was able to get back to sleep pretty quickly.

Monday A and V left, but before they did so, they took J to his doctor appt. They seem to have the same feeling I do, that maybe this cancer is not going to be beaten.  We don't speak about it except in very casual terms.

 But they arranged a referral to palliative care, and also met with the nutritionist. J was once again strongly told reminded to be eating 4-6 small meals daily, given meds to help with the sore throat, prescribed a special mouthwash (I wish now I'd kept mine because it was not cheap, and they gave me a Listerine-sized bottle, of which I used maybe half a cup) to help with mouth pain or sores. 

And palliative care just means he is receiving treatment for the terminal illness, while hospice care means he is not. In both cases he will be offered counseling, help at home with meds, family support, pain control, etc. 

Literally 2 hours after they left, J fell hard on the pool deck, landing on his hip/rump area. He was in extreme pain, but refused the urgent care. J is using the walker all the time now.

 The next day, Tuesday, he was in so much pain he could barely walk, so at radiation he was loaned a wheelchair, and then at chemo he forced himself to walk, slowly but he did it. Meanwhile I picked up some rx's and dropped off a return.

Wednesday was a dear friend's birthday and I texted her. After Radiation, Sis came over and spent the afternoon here making Congo bars, and then helped me re-arrange the rugs in the living room, kitchen, and "library" area. She did the vacuuming too, so she was in general a much appreciated angel.

That new rug looks amazing, even though the colors definitely do not match the picture in the ad. It's very soft, and much brighter, making that room more cozy and comfortable without feeling like a cave.

Thursday J finally agreed to go to urgent care to see if indeed he had broken something. MissS came over, bless her heart, to dog-sit Missy while we did that. Xrays were done, thankfully showing no fracture. He is healing slowly because he is older, and already feeling the worsening effects of the chemo and radiation and less nutrition.

At home later, after MissS left, believe it or not he fell again, this time because the stupid rug edge in the library area got caught under the wheels of the walker.  The carpet tape had arrived that day but I had been too exhausted to do all the edges, however I did do that one right away. He also has to learn to pick up the front wheels when moving around the house.

Today's goal: I will work on putting carpet tape on all the rugs which have edges that curl up, or rugs that move easily. 

 I have been doing all the chores, because he cannot, so most days I am having more pain in my back the later the day gets. Getting in the pool has been a godsend.

Also the gigantic debris pile was picked up by the trash people, thankfully, even though they'd left me a note attached to one of the branches that there was "Mixed household and yard debris". I later figured out that it was a flag for the big crane operator to come by and do his pickup. I had thought it meant I would have to separate the trash piles myself, and was not looking forward to doing that little chore. Phew!

Friday my "certified refurbished" Kindle tablet arrived, and I got it set up very quickly. Then I deleted all my stuff off the one with the cracked screen, and re-set it to factory default. Not sure what to do with it now. 

  With the new one I have also invested in a case for it, and I have to say I wish I'd done this sooner. I also invested in a 2-year warranty. All together, my  new one cost me a big fat $35. (It pays to have rewards and  bonus money...) I am very pleased. It's the same model except one generation newer as the previous one, so extremely easy to use.

Friday also the radiation took much longer. Their machine was down, so he saw the doc first while they worked on the machine. Eventually they got it working, but we were there for a total of 2 and a half hours. At home I did some cleaning and laundry in prep for the next day's family gathering. 

Then into the pool, as we have done almost every afternoon. The pool that day was almost too hot, at 92 degrees. I worried about the plants and so watered everything, before getting back into the pool.

Saturday I went to the Meeting, and J stayed home with Missy. People asked me about him, and one person even asked me about Missy!  Afterwards I went directly home, and made the deviled eggs, and got the kitchen ready.

At 1:30 Bro and SIL arrived bringing the grill and meats and buns and condiments and chips-- tons of stuff!  Shortly afterwards  MissS arrived, bringing her yummy chickpea salad and mini-cupcakes. And last to arrive  was Sis, along with BIL and Dad, whom I haven't seen in weeks. Sis brought the wine and her yummy potato salad and a quinoa dish and the Congo bars. 

Then there was a wonderful get-together. J sat in the living room listening mostly, and exhausted. Bro did all the grilling, and SIL was his "assistant" taking orders, etc. Everyone just took over, and pitched in, and organized-- neither J or I had to do a thing. For the meal itself half of us sat in the kitchen, and half in the living room with J. I so appreciated every single person's thoughtfulness and concern.

At one point the kitchen door rattled a bit, and we all stopped talking. I said aloud that maybe there was a cat stuck in the workroom, so Sis got up to see, and got the shock of her life when Kit was standing there!  We had been told he was in a lot of pain from a serious burn on his hand, and wouldn't be coming. But I guess he changed his mind, and everyone squeezed over at the table and he joined in. 

Later still, everyone pitched in and cleaned up, and distributed food back to the  original bringers, and soon it was all done, clean, and looked amazing. J had gone back to bed, so he missed the goodbyes. 

BIL took a look at the pool and chose a set of pool-step holders/handles  (can't think of the right word!), and will be coming to install them when they arrive at his house. Again, everyone in the family is chipping in to do this for us. 

 It is such a gift. We both feel so humbled, and so grateful for all the support. It's overwhelming.

About an hour later J got up again, and sat out by the pool with me while I soaked in it for awhile. Then we watched a movie and were asleep by 9 (him) and 9:30 (me). 

It was a wonderful day. I am so blessed by this family.

TYG

Sunday

 Sunday, and already it is humid. Yes, summer is here, big time.

 The girls arrived Friday morning, just before we had to leave for radiation.  It was decided that I should stay home, while they took him to his appt, and met the doc, etc. They had a lot of questions, and took extensive notes. 

After they came back, V took an extensive inventory of the foods we had.  She'd gotten a lot of tips from the doc and the nutritionist. She and A then headed for Costco, and returned with armloads of boxes of various protein- filled snacks, drinks, Ensure, fruit cups, etc. They explained all of it to me and J, and then headed out to their hotel for a short rest before returning for dinner. We'd decided ahead of time to order from the nearby Chinese restaurant for a to-go order. 

After dinner we all felt exhausted, and they didn't stay long, heading out to their  hotel to turn in early.

Saturday we were both up early which means for us 7am or so. I left for my meeting while J (who still wasn't feeling energetic enough to go) stayed home and worked supervised what the girls were doing.  They got a good portion of the To-Do list done! The pile in front of the house for the yard debris pickup on Wednesday is astonishing.  They all got in the pool, and were just about to leave to take a nap when I got home. 

They returned around 4 to make dinner, and we just watched some TV in the living room, both girls so solicitous. I know he doted on it, and was so touched and appreciative.

Earlier this week the Distribution money arrived, the second deposit. I sat down and paid bills, and ordered some things from my wish list on Amazon. 

Thursday night Kit and MissS arrived to make a yummy steak sandwich dinner for us!  That was absolutely wonderful. The soft bread was just right for J, and the meat was cooked just right. Kit brought a big ol' cookie for dessert. And they even cleaned up afterwards.

Wednesday the plumber came for a big 5 minutes, took a look at the tub's drain, and said flatly, "Nope! I can't fix that. But here's a photo of something you can buy on Amazon that will work!" And he texted me the item, so I ordered it. It's installed, and doing its job.  (If we'd known he couldn't fix it, we never would have asked an expert plumber to come and look at it.Well, it's working now.)

(UPDATE: It is  not working. He sent us a picture of a hair-catcher for the drain. I returned it, and we are using the old drain.)

 TYG

 

Sunday

 So, updates to last week: 1) the plumber texted me Wednesday morning saying he would be at our house by noon. This was upsetting: the day before I'd received a text saying he was scheduled for between 2-4pm. That was perfect because we had errands after the radiation, and a grocery order to pick up. So him saying he was on his way not only disrupted that,  but I was actually sitting in the parking lot while J was inside doing his radiation--there was no way I could leave, of course, or even reach J.

I had to find their phone number and call, wait on hold, reach someone to explain the issue, on hold again while they tried to reach the plumber, actually got disconnected, had to call back and explain again the whole thing to a different person, who put me on hold to call the plumber.  What a mess. To top it off their next availability was next Wednesday. She did say she would call us if there was a cancellation. Yeah, thanks. This is now two weeks since J has not been able to take a bath. 

Second update is from Tuesday. That was the day I drove to NSB for my appt and Sis picked up J to take him to the oncology office. For once, my doc was running on time, so I arrived back home literally in time to cross paths with Sis and J in her car. It was decided for me to follow them up there, instead of me going into the house, calming Missy down, then leaving again when MissS arrived to take over. (I kind of wish I had stayed...but maybe it's for the best.)

When we arrived at the chemo place, he was taken back for his vital signs, and Sis and I had a few moments to start to catch up. Then MissS texted that she had gotten to the house but discovered she'd forgotten her key... so she left to go back home and get it, by which time it was too late as she had a meeting to attend downtown. She did that, and then texted again afterwards asking if it was really necessary for her to sit with Missy. We did ask her to come back to sit, and she came back over... greeting us at the door when we got home.

We don't know what  happened while we were all gone, but when we walked in the door all was quiet. She had barked apparently so much that she was hoarse. Poor little thing. It was an interesting experiment.

Monday was a quiet day (except for the radiation) recovering from a busy weekend. 

Tuesday was a long, exhausting, stressful, emotion-packed day.  But Sis and I got to go have lunch together, and vent and moan and laugh. This was while J was getting his first chemo. We were invited to sit with him in the infusion room while his labs were drawn. Sis hadn't been in there before, but I saw 3 of my nurses in there, and one of them was who took care of J. She of course recognized me, did a double take, said, "I thought you were done!"  And I said, "I am... but this time we're here for my husband."  She looked at him, then me again, and said , "Oh, I am so sorry..."

J had seen the doc shortly after 11, while Sis took notes for us. This was the first time Doc said the words, "No cure as such but we refer to it as being in remission."  First time that J had really thought about that, as he was trying to focus on being positive.

Every thing I've read ranges from "Uh-oh, no hope" to "But every body is different, and responds to treatments differently, and so-and-so had stage 4 and that was 12 years ago!" , plus everything in between. Horror stories, heart-breaking stories, real life experiences on the lung cancer support group I belong to.

I have not told J these stories. 

So he got through the chemo which was about 2.5 hours, maybe 3. During the waiting time while I was in the lobby after lunch with Sis, I received a phone call from the Radiation people, asking where J was, that he'd missed his appt at 11, and he needed to come in right after the chemo.

 (J had called them the day before and explained the situation-- that 11am was the only time the doc could see him, and his first chemo was scheduled for right afterwards, etc. The person on the phone had then said, "Oh, it's okay, we'll just cancel the appt for Tuesday and move that visit to the end of the cycle."  That made sense. We both assumed that this girl would convey this rescheduling issue to the radiation team, but apparently she. did. not.) 

However, the Team not only called me, but also called J, insisting he come in that day right  after  chemo,  and  they would "fit him in".  What the hell.  I wasn't even sure J would be up to it, but when they called him, he said "Of course, I'll be there."

So. We did that, and when he was done and in the car afterwards, he was quite subdued. As was I. I was even too tired to get in the pool. I just needed some down time, in the cool living room to decompress.  J did get in the pool briefly, but could barely pull himself out. We both watched a wonderful old Gary Cooper western called, appropriately enough, "The Westerners". It's one of my favorites. 

Then we had a frozen pizza for dinner, because neither of us could even consider cooking. 

Wednesday was the day we learned the plumber wasn't coming after all. I had a burst of energy after a good night's sleep the night before. I cleaned out the kitchen drawers, and rearranged the living room a bit.

 I was also expecting the monthly bug guy, but when I commented on his absence to J, he calmly said he'd cancelled the appt because of the radiation appt and a possible conflict in timing.  Arggh.  So that is something he will be calling to reschedule tomorrow.

Thursday after radiation we had a grocery order to pick up, and then I stopped  into Aldi's for a pretty little trellis I'd seen advertised. It is now in the front garden, where the twining hibiscus will hopefully lean on it.

I think Thursday was the day a package arrived from Amazon. It turned out to be from my sweet Bro.  Even with him being away on a business trip, he ordered  a particular brand of cookies, which he knew I loved from my years in high school. Such a treat!! 

Friday after radiation (just take for granted that all daily things happen after radiation, from now until mid June) we picked up an rx for me, and got gas for the Nissan, and finally home. I did some cleaning, and later when J woke up we both got in the pool.

Every day he takes at least one nap in the morning before we leave at 10:45. At home he sometimes has a bite or two and then goes to lie down again.  He's learning that he absolutely must pace himself. 

But the side effects for him of the combination chemo and radiation are severe fatigue, dry mouth, severe headache, stomach issues, and weakness.   Still, he managed to finish plugging the cracks in the pool, and watered the front garden, and took Missy for her walk three days of this past week, and got in the pool almost every day. The rest of the time he is sleeping, or lying down in the bedroom.  Sometimes he will try to watch a movie with me, but half the time he is dozing.

Saturday he was too fatigued to go to the meeting with me, so I went alone. Several people asked about him, and I made sure to tell J this at home. He really wanted to go but just didn't have the energy.

I gave my friend who is leaving for France a beautiful scarf in her colors, which she loved. Another member brought roses, and gave one to all the women  for Mother's Day.   I led the meeting, and sat comfortably with my friends. My friends: such an important word. I know I can count on these people, and a couple even text or email me during the week, checking in. I appreciate that so much.

At home J was still asleep. I had another burst of energy and  cleaned out under the kitchen sink, and the pink pantry bookcase and the fridge and two of the shelves against the side wall, washed the slider door window, and did a load of laundry. 

Well, it's Sunday morning, J is sleeping after having taken Missy for her short walk. He had some pineapple this morning and a banana. Now he is awake again, with a bowl of ice cream. I think he eats so much ice cream every week it's amazing. I made some oatmeal cookies earlier this week, but for some reason they completely flattened out in the oven while cooking; they look more like lace cookies. They're good, and J loves the soft chewy and crispy texture, but ice cream is his thing recently.

I get cravings for things too, but one or two bites and I'm done. I don't know if my taste buds are permanently changed from the chemo, but it's frustrating to have a craving for a remembered taste.  Although, that tuna melt on rye that I had at lunch with Sis was so very good. I might have to try that here.

TYG

Sunday

 Best news ever on Monday morning-- we both tested negative!! Oh, if we could have jumped for joy, we would have. The sheer relief of knowing we could leave the house safely, do some errands, go start radiation. 

First we did those errands, including mailing a package to my Daughter-in-law Lauren. I have a small vent here: in a soft flat padded mailer I put two toy harmonicas for Teddy and Poppy, and a small hinged box with glitter and hearts and positive affirmations in it for Layla. The whole thing fit easily into the mailer and so I folded it in half and taped it shut. The cost to mail this precious package was $17.85. I mean, the shipping cost more than these items were worth, by far. I will never do that again.

The first radiation went just fine. Missy and I waited in the car, and J was out in 20 minutes. He was jubilant.  He kept saying, "Finally I can do something to  fight this!" Then he called Lydia and told her the whole thing too. He was almost in tears.

He has done this every day since. He had radiation  the next day, when the tub guy came, but he drove himself there while I stayed home to ... watch the house. The company did an awesome job, and by the end of the day that tub looked brand new, just gorgeous. 

Unfortunately, in the process, at one point early on I heard one guy say to the other Oh Shit!!  I froze. Then I saw him hurrying past the window to his truck. There was silence for awhile, then another truck pulled up and the big boss and the worker were talking and waving arms, etc. 

Apparently some agreement was reached. Turned out later that the drain stopper pipe just below the drain had cracked off, completely rusted. 

We now have a plumber scheduled for this week to replace that correctly, without ruining the gorgeous new refinishing job. Sigh.

Wednesday J's radiation appt was not until 4:45, and as we were getting ready to leave (Missy goes absolutely insane with barking and jumping and leaping-- it is crazy-making to deal with), J was leaning on one of the kitchen chairs to put his sandal on... which fell over...  which of course made him fall... landing his head on the bamboo cart's bottom shelf. I rushed in from the bathroom and there he was, lying still, eyes closed.

 These falls... well, amazingly he was all right. No bleeding even! He moved a bit slower walking out to the car, but he was surprisingly okay.

Thursday we drove to his new PCP office, and he went in alone, of course, because Missy can't go inside. We waited in the car. An hour later he came out, fairly pleased with the new doc. Prescriptions and referrals and authorizations are now in place.

That afternoon we got in the pool! It was finally 86 degrees and heavenly. We luxuriated for an hour before it was time to get out and get ready for the drive to the Radiation appt at 5:30. We had a late dinner that day.

Friday was a bit stressful for me but at the time I didn't write down what happened, so I am not quite sure why! J's radiation appt was 11. All went well, and then he saw the doc after the session.The doc gave him some pain meds because his lower back is really aching/painful. Doc said that was not uncommon with radiation to the spine.

Meanwhile I felt sort of sick that afternoon for some reason. Later I realized it was a side effect of a once-a-week pill I take. From now on I will try taking it with food.

Saturday we went to the Meeting. First time in two whole weeks. Catching up with friends, collecting hugs, learning sad news (that one of my sweetest and most favorite people is moving back to France to be with her family there while she deals with her chronic illness).

Missy was more active during that meeting, so that was a bit challenging, keeping her on the leash. I guess she's losing her anxiety being in that room with so many people. There were not as many people as usual, but that made the group feel more intimate. 

At home, I had an extreme energy burst. What a blessing to feel somewhat normal. I did my stretching exercises, watered all the outdoor plants on the pool deck, swept the deck and removed all the leaves,  took an old pool noodle and swept away all cobwebs I could reach inside the enclosure, then went inside and vacuumed the whole house, dusted every damn thing, trimmed the matted fur on Missy's ears, found a recipe to use up my last eggplant and made that for dinner, and lastly, took several photos of the beautiful new tub. 

Then we both got in the pool and floated and soaked and talked for an hour. My back pain was really helped by the warmth of the water.

I woke up very sore this morning, for some strange reason!  But it went away as I walked around, doing morning chores. 

This coming week J has a meeting with the oncologist Tuesday morning at 11, and then he has his first chemo. He is done with the radiation on his back, and so all sessions from now on will be on his lungs, daily until June 21. That's the plan, anyway. 

Tuesday morning I have my own appt with the infectious disease doc at 9, so I'll leave early and do that, while Sis will come at pick up J and Missy to take him to the his appt. When I'm done I'll meet them there, and I'm not sure what'll happen then. 

Wednesday morning we have the plumber. Every day "we" have radiation at 11:15 (except Tuesday because of the oncology appt).

On the 17th, J's daughters V and A will arrive for a three-day weekend, not staying with us, of course, but here expressly to cook for us, and do various errands/chores we need done. J is working on a list for them. I'm really hoping they will help us with transferring the giant jade to its new pots. 

It's a full schedule. Thank god we have so much support from our family and friends. We are blessed.

TYG