I don't know what hit me

 Yesterday I was progressively feeling kind of out of it, exausted and fatigued from the constant D sessions. Seriously painful internally and externally. So we went to bed and turned the light out arou nd 10:30 ish. Very unusual but it had been a fatiguing day for both of us so not that surprising. 

The best I can describe how I was feeling is similar to the fatigue from when I was sent to the hospital for low potassium and high liver count. It progressively got worse until around 2:30 and I had whole body shivers and could not get warm. Toes and fingers were cold, achey almost fever sensation and was slightly hungry but didn't have the energy or brain power to fix or eat anything. Couldn't relax probably lasted for about an hour then hit the toilet again and was feeling a bit better. A few afib coughs once in a while during all this which is why I think it has something to do with all that.

I was panting constantly, back and body aches until I was able to fall asleep briefly (about 2 hours ) then woke up in the morning still worn out and exhausted. Managed to fix two sausage links then went back to bed. Rocky was in the room with me and of course I had to move him from laying on my side of the bed so he took offense at that and was a pill so had to put him in the bathroom so I could get some more sleep.

I was feeling a bit more cognizant and hungry in the afternoon (around 3-4) and Jon asked if I wanted a pot pie, I said yes definitely. Ate most of the pie while he was napping, then went down for a little while for another nap. Decided to try one of the yogurts, strawberry cheesecake, chalky as ever but I managed to swallow it all down. After that I fixed half a container (small bowl) of broccoli cheddar soup with a few crackers but it wasn't as satisfying as the first time we had it. 

And now it's just after 8pm and I'm still full from the soup and feeling a little skin sensitive on my back and still moving slow. For the third time jon has come in and asked how I was doing and then asked if I was going to take a shower. I honestly don't have the energy to do that right now, just want to go lay down again but only on my right side with a full stomach.

I've got no pictures to share, just been one of those few days. 

The blue wave is happening but still a battle is ahead of us all. 

Goodnight. 

Doing okay groceries are done for the week

 The weather is holding cool, occasionally rainy (yesterday was rainy overnight so things are damp) Today we clear and in the 70's so glad I needed to wear my sweatpants and a heavier Hawaiian shirt over a tee shirt.

That photo was actually taken in the middle of the night when I got up to go pee and could smell the rain. Jacaranda outside the kitchen window makes for some pretty pictures.

So I had a PET scan today and don't remember which doctor ordered it. It was base of skull to mid-thigh so I suspect it was likely my oncologist who I have an appointment with on Friday. Other than the usual fasting for 6+ hours before the morning appointment it all went as smooth as it could. I brought a change of pants with me and my knitting and so had way too much to keep track of but didn't lose anything. I decided to splurge and hit jack in the Box afterward because I wanted a sourdough jack burger. Would have been cheaper to eat at Costco but that was too far away for my patience level at that point. Me driving hangry is not good.

 

 

 

 

 

 

 

 

 

 

Wee have food and treats. Jon's idea to pick up the caramels and picked up the french onion soup by mistake. Barely visible in the fridge section is the double pack of the broccoli cheddar soup again. Oh yeah, and a pumpkin bar cake he wanted to try. We have to eat down some things in the freezer quickly because that 6lbs of hamburger needs to get divvied up and in the freezer. I think Lasagna is on the menu for tomorrow, we both had one of the onion soups today after we got home and settled in. Yes we have veggies in the drawers except for tomatoes. The usual Roma tomatoes were astronomically expensive now, in season they're about .99/lb beginning of 'off season' they go up to 1.49. Yesterday they were 1.99. Nope, will do without and luckily a friend I'm doing a yarn for grocery swap has some tomatoes. Will need those for making BLT's later on.

So got some healthy stuff, some fun stuff and long term foodstuffs. I need to dig out the chicken that's at the bottom of the freezer and put it at the top so it doesn't get too far into the freezer damage. I splurged on getting some beef bologna instead of the tomatoes and a few other things as well as some breakfast sausage that was on sale. Eating good tomorrow morning for sure and for lunch, and for dinner. Flavored yogurt for a snack as well as pumpkin cake, pickles, 

Should have taken a before picture of the freezer at least but it's a good feeling no matter that we have a fully stocked fridge. All the other bills on the other hand.... another matter entirely. The second half of SDGE from last month is paid, Costco is paid, had to get cat litter and wet food for Rocky, which the litter was half the cost I normally would pay so that's a bonus. Jon took a chance and bought a pair of headphones that are supposed to sync with the tv but that was only $20. It all adds up though as it usually does. 

My internal combustion system is in pretty sorry shape right now. Almost like it was two months ago and need to message my GI doctor and let him know. Trying to not eat a lot of 'spicy' foods but does a 'zesty' pickle count as spicy? Beef tacos with mild salsa? Onions? Garlic? Do I need to knock my diet down to rice and brown gravy with a side of broccoli with healthy bland yogurt for dessert? Just before and after surgery I was feeling pretty good, nothing out of the usual but now... bleh. The infusions are not working at all but the current flare up started the week before the infusion. 

I am a month exactly after my surgery and everything is basically healed up. The scars are a bit tight and still a bit tender here and there but that's to be expected. The PET scan had my put my arms up over my head and thought 'I'm not supposed to be doing this technically', I mentioned to the tech that I had breast surgery a month ago so my scars were a bit sensitive he asked if I needed support on  my arms. no dude, I need to not have my arms rotated above my shoulders. It was fine, I'll be sure to lotion them up after my shower tomorrow.

Okay that's enough update for now, more after Friday doctor and visit.

I HOPE YOU ALL VOTED ALREADY!! IF NOT GET OUT THERE AND DO IT!

 

 

 

 

 

A bit uncomfortable but feeling festive

 So yesterday was a full day again. Had my bone scan (ongoing due to age and having had chemo to check for calcium and bone loss) and then another post op appointment. We were able to get funding so we could have lunch between the two appointments and with some spare time we wandered into the Lowe's that was right across the parking lot. 

Feeling festive due to the seasonal display inside. Those are all separate pieces and off to the right is the blonde elf holding a toy. That entire set up is close to $2000 including the elf and let me tell you if we had the money and yard to support it..... so I had to send this picture to Amber. They also have a giant Frosty the snowman further to the right.

 They also were selling a pickle dog toy and sent that to Amber as well since she's all about pickles. That was our jollies for the day, oh they also had multiple colors for large rolling tool cabinets and had a pink one out on display. Can't say they got yours mixed up with theirs if it's pink or teal, or olive colored. There are more women getting mechanic jobs now so this makes sense but I dare anyone to make fun of a veteran mechanic with a pink tool cabinet. Jon said he'd buy one.

So feeling uncomfortable has to do with being able to wear a smaller size bra and then on top of that is a 'bra band'. The point of that is to force my new right side down on my chest a bit more and combine that with 'massaging' (a bit painfully mind you) once or twice a day to get it looser. I'm following directions as much as I can, the PA said I don't have to wear the band constantly just as much as I can tolerate. The band is also reminding me to sit up straighter because it pulls in on my lower back and pulls down on my chest. So this is all bonus stuff for better results. I got to have a full on shower this morning whoohoo! Almost feeling human again! I don't have another appointment with them until close to Thanksgiving. 

Which reminds me I need to start making a grocery list. Turkey is gong to be provided by a friend along with some sides I suspect. We'll be over at Amber's on the day of as usual which is not a problem, family is always good but we don't get any leftovers so hence having our own another day.  

I discovered an abandoned hat project I started a while ago and am working on that to finish up in time to send off. Easier on the hands than doing socks a bit at least, just trying to keep my hands occupied and not chewing my nails with my rising anxiety levels. Everything from the socio-political situation around the world and changing medical coverage paperwork to the pain in my right hand.

We're managing as usual, best we can do with what we've got. At least we have a little extra food  money for the next year and then a little boost to the monthly check in January. Which will be needed but still not enough to cover inflation. Here's hoping there will be relief of sorts by the end of next year.

Tra lala and all that jazz. 

 

 

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

 

Infusion day and not much else going on

 As the days wind down, despite the uptick in temps a few days ago, it's definitely chilling down now. My surgery sites are all healing well so sleeping is easier (If I could convince my bladder to not fill up every 2 hours).

Picture is an Angel Face rose growing along one of the building paths in the complex. It's very old, has not been taken care of well and doesn't get nearly enough sun. But it manages to give a flower or two every year.  I have not done anything in the garden since last month for all the reasons I've mentioned before, might be able to do something next month. Hopefully.

Infusion was not as smooth as previous sessions, we got there about 10 minutes late but they hold the chair for patients for 15 or 20 minutes after appointment time or give you a call. So nothing unusual for wait time, the nurse however.... not the greatest in technique. She didn't have my hand at the right angle so it was rather painful and then it was still painful to move my hand around so I couldn't do any knitting. Had to sit there with my arm and hand on a pillow carefully positioned. Scrolling on my phone with my right hand only. Luckily it's only about 45 minutes to an hour so I survived but dang that hurt! No lasting scarring or scab to show for it luckily, the scab from my hospital stay came off a day or two ago. 

My right thumb however is still being cranky which puts a crimp on doing Christmas gift socks. The night time brace is not really helping and neither is the support glove. Well... if I didn't use my hand at all, it might heal faster but.... yeah not happening unfortunately. Yet something else that's going to need a referral from my doctor to a specialist to see if there's anything else that can be done. 

Down to the end of the month and I have two appointments tomorrow, one close by and another post op up in Scripps.  So we'll be out all day essentially and I'll see if Amber can spare $20 so we can grab a cheap lunch while we're out. Jon was starving by the time we got home today so he fixed some leftovers and then I made grilled ham and cheese sandwiches and a can of tomato bisque soup. Delicious of course but we'll be out tomorrow about the same amount of time as today. 12:30 to about 4pm. There's a chunk of time between the two appointments luckily to drive through somewhere or pick up a hot dog and soda from costco. Will see what happens if I can get some extra money from Amber.

I expect we'll get money on Friday since the first is a Sunday so shopping will happen on the weekend and the first Monday. It's the only time we get out really, shopping and doctor appointments. 

When gas was affordable we would go do stuff. Drive to Balboa Park and walk around, to find a walking trail, take the trolley to downtown or Old Town. We did stuff. Now it's 'I have three doctor appointments that will eat up 3/4 of a tank of gas, we can't afford to drive anywhere'. Let alone spend any money on eating out somewhere 'extravagant' like a real restaurant.  Thank you all for the birthday money, it gave us some freedom and fun with food and it was greatly appreciated! 

Let's hope the winds of change come our way for everyone next month and the world can start healing. 

 

Dr follow ups nothing to note

 Weather is trending up with clear skies so this weekend is going to be hot as predicted. We haven't run the AC for almost a week because the weather has been so wonderful. 

 Blue skies and actually got down to 50 this morning. Shock and surprise, doing laundry on Friday so I'll have my jeans back. Loving my heavy shirt and sweatpants now but not when its going to be 90.

Not the chocolate cake I was hoping for but it is chocolate and a type of 'cake'. Went looking for cake, stopped at Rubio's yesterday for another birthday deal then 85c bakery was almost next door. Prices and selection were not what I was hoping for so we drove over to Von's (I love Santee for all the things within blocks). Small 6" chocolate cake was almost $30. Almost bought a cheesecake factory chocolate cheesecake then Jon found slices of chocolate mousse ganache cheesecake for about $7 each and got those instead. He downed his in one sitting of course and I am just taking a few nibbles here and there. It's delicious, I'm just not big on scarfing down an entire slice that big in one sitting.

Meanwhile back at the doctors. God my belly binder off for good and more stitches out in two weeks from the surgeon. Everything is healing fine apparently just still have to be careful reaching overhead and still not comfortable laying on my side. Still have insomnia but leg issues seem to be resolving. Next appointment is also on the same day as a bone/calcium scan so that will be interesting having to jet from Santee to Scripps but it's almost straight shot and timing is fine.

Saw Dr Keller (GI) at an earlier time today. Got a call yesterday saying he had an emergency hospital situation he needed to attend in the afternoon so morning appointment at 9:50. I left a bit later than I should have given traffic in that direction but it all worked out.

Have I mentioned I love Dr Keller? He is absolutely wonderful, good information, engaging, goes over treatment and why and all that. He has presence in the room and even if he's looking at the screen and checking something he's still aware that I'm in the room. So anyway, asked about how I was feeling post surgery, was glad I got that taken care of (like I had a choice?) talked about another check on blood count and another fecal test beginning of November then depending on that might adjust frequency of my infusions. Also another follow up appointment in about a month and plan on a colonoscopy beginning of next year. 

So he's on top of things with my treatment plan and everything else going on which makes me feel better about what's happening. Told me if serious diarrhea flares up to contact his office and they'll see what to do. I told him about odd nerve twinges on the toilet and all that and he had no answer but shared that other patients have had similar things happen. Just one of those weird neurological things there's no solution for and an oddity of the human body. Also stopped at Jack in the Box on the way home because I was starving and wanted a sourdough jack burger then saw they had monster tacos. I didn't eat anything before I left because I was going to do a fasting blood draw then completely forgot until I was on the freeway. Oh well. I sat in the parking lot of the place were JiB was and scarfed down the two tacos. Stopped at the store on the way home for the lone russet potato, another block of cheese and more bacon. 
 

More gastrobirthday foods for consuming. I finally made another batch of the bacon shrimp chowder. Absolutely lived up to the hype once again with the addition of mushrooms. I am absolutely stuffed on that after having half a burger and two tacos on the way home. Holler if you want the recipe, not sure about issues with diabetes since it has one russet potato in it. 

Debating on whether I want to take a nap or not. I didn't sleep well and got up at 7 thinking I wanted to take a shower this morning but then decided not to. Food coma I think is setting in as well but I'm full and Rocky is once again settled under the cover on my side of the bed. He's taken to 'hibernating' now that the weather is cooling down. 

 No appointments tomorrow but Jon has one on Friday at Grossmont so will check finances again and see what our options are. As things go, doing okay. Hope everyone else is doing good as well. 

 

Good feeling gone, the other shoe drops

 But first, the weather.  We got some good rain and it's still cloudy so really nice weather that may last an other day or two. I went and checked on the garden and my main raised bed, only wet about a ½ inch down. Kind of figured that but can't do any serious garden work yet.

Caught Rocky in the window perfectly just wish the background was better. Something caught his attention for a good half minute during a break in the rain yesterday. I was able to take him out on his leash today and snap some pictures of the cloudy sky and the garden.

Because of the crumbling eaves (despite them repairing the gutters last year) the water still drips off at the railing and puddles right in front of our door. Had to put a towel down to keep the water from splashing inside too badly but then in the evening the wind came up and the rain pelted down even more so had to close the door. It's wonderful really without any worry about flooding in our areas.

Now then about that shoe drop. We both got a letter from Sharp about the change in Medicare coverage. Since we were going directly through them (private company) coverage changes (see previous post about loud rant) so now we have until December 31 to set up a new medicare coverage like an HMO if we were working. United Health Care accepts Sharp thankfully and initial checking shows both hospitals and a doctor are in the network. So far so good, the drug coverage on the other hand is separate and we have to do a lot of work to make sure that all our meds are covered. I already got the letter saying I'm covered in Medicare but not sure how that dovetails with the new system coming up.

Some plans have a zero copay for doctors and specialists, others it's anywhere from 25-35 for specialist visit. I'm not sure if GI, Oncology and Cardiac are specialists so have to check on that then there's that OTC benefits card. Our current card is $140 quarterly and I rarely use it all, new system it drops to anywhere from no benefits to $40 quarterly. We use that card for things like rubbing alcohol, toothpaste, mouthwash, bandages, Jon's nose spray and other things. Leave it to say we are stocking up for the next three months as much as we can and won't be shopping at CVS to make the money stretch.

So yeah, that sent Jon into a depression due to him not knowing how to properly search things he thought he wasn't covered because he has Medicaid (MediCal). I told him, I'll do all the computer work and let you know, we'll get through this.  I am SO glad I got my surgery and treatment done before all this! The only thing left is getting my cataracts taken care of and I can bet that isn't covered 100% any longer either.

 Yay for cloudy skies and actual weather! Only issue is the only pants I have are either sweatpants or shorts. Time for sweatpants it is, since my jeans are in the laundry and the soonest we can wash is Friday. By next weekend it'll be back up to 90+ then dropping down again so welcome to the roller coaster fall weather season!

You know the weather has been hot when even a tough as nails succulent like the Jade looks totally thrashed and toasted. It's a mess and honestly not surprised but still kind of sad, though I know by spring it'll be looking better after all the leaves recover. It's so dense I doubt any water got through to the roots.

So there it is, more updates and not the kind I like to have. Angry, frustrated, anxious and stressed but putting those aside have to keep moving forward and make sure things get done we we have what we need for the future. 

It's actually raining!

 Woke up to cloudy skies (as I figured would happen) and the definite smell of rain in the air. We got out the door to do some quick groceries and by the time we finished it started to pitter patter on the car as we left the store parking lot. That was around 11:30 or so and the temperatures are in the 70's. Feels like late spring in Seattle last time we were there.

We forgot it was Saturday and the store was more crowded than patience tolerated but we made it out without being too rude to people. Typical annoying types; older lady with rolling cart and small wire haired dog that clearly was not an assistance dog, a trio of one male and two females in middle eastern/Pakistani robes (absolutely no prejudice here but it is rather cliche) who seemed to think this as a grand market including the parking lot and walked in the middle of everywhere. Harried moms with three kids (been there done that), totally unaware other ethnic types who stand right where you need to get something (the green onions finally!) I said excuse me and he stepped back but shimmied his cart up against the display.....I had to repeat, excuse me then 'you're standing right in front of what I need' and I just leaned forward and grabbed two bunches over his cart.

  It really came down with big drops by the time we got home and hustled inside. Such a great feeling and then one rolling thunder going up the stairs so it was really awesome. Jon kept saying 'take your time' and meantime I wanted to dance in the rain.

I don't have a good picture of the rain out my window but it stopped for about an hour and now has started up again. I can smell the wild grass and bushes on the distant hills and reminds me of so many rainy days when I was growing up and then camping later on as an adult. It's one of my comfort smells if you want to put it that way. Hardly any breeze now just the rain dripping down the tree and eaves. Happy sigh. The only thing that would really complete this is a nice deep covered porch to sit and knit and watch the rain come down.

Didn't sleep as well as I wanted but doing okay now and don't feel the need for a nap but it's 'early'. But my stomach skin on either side is ITCHING!!!! That's to be expected when your skin is no longer stretched. I wasn't balloon tight fat before but the skin has been stretched for years and now it's relaxing a bit. Not to mention the nerves that were damaged in the 'fat grafting' are starting to regenerate so just.... uncomfortable and not sure if I can use lotion on the areas. Won't do any good to message doctor because I won't get a message back until next week and my next appointment is Tuesday. Wednesday is my follow up with GI doctor 'post op' so to speak, get to tell him that my system has leveled out finally but that could be from meds and surgery. Annoying thing about this 'support girdle' is it keeps folding up at the bottom when I'm sitting down mostly on the sides and back of course. Same with the sides on my bra as well, just minor annoying that almost constant and compared to the alternative, I'll put up with it.
As for further Birthday Gastro-shenanigans, will decide whether to go to Habit or Rubio's on Thursday when we're in the neighborhood of both establishments for Jon's appointment. Will see how long the food celebration will go but still have get that chocolate cake in somewhere.

Going to go work on some knitting and enjoy the damp dribbles outside from the inside of my bedroom.