Test results and random stuff

 The weather is now definitely ramping up to summer. Going to be 90 today and slightly lower but still climbing through the following week. So we are buttoned up for the third day because it was 86 by 11 am.

Some pretties that I made for knitting. That's all I've got for photos other than garden stuff and that's minimal.

Meanwhile back at the haunch.... if you get it you get it.

Test results posted for my poop sample and calprotectin is still high but is lower than it was in December. There should have been one between now and then but for whatever reason it wasn't on the order. So the infusions are sort of working but likely not as quickly or as well as the doctor would like. I may well be getting a call from him next week sometime (hopefully) to see what he thinks. All my lab tests are good other than what would be expected, I'm not in any serious discomfort, haven't had any accidents in over a month or more. It just feels like this is my normal now. I've given up on keeping a detailed bio log because it didn't seem to make a difference with what I ate and anything changing the next day. So I only log when I take Tylenol and a rough outline of what I eat for the day.

The iron infusion went just fine, no side effects, no delays and nothing else to report on that. I slept okay last night, no issues with feet or legs at all so something is working. Still feel tired today but waking up four times during the night to pee doesn't help with restful sleep. Having my one and only coke for the day right now around noon which is my usual pattern. No soda after 1pm is now the goal and only one of any kind of drink with caffeine. 

Short by a lot for SDGE and phone as usual and it's barely middle of the month. At least SDGE has leveled out to under 100 the last two months but still running short. We're hoping to possibly, maybe try to find a cheaper storage closer to us next month to save about 100 on the budget. Will see what happens. I know I said that before and it's just a way of me keeping it in mind to actually follow through. 

I've got lasagna in the oven today and will toss in some of the Texas Toast with extra garlic and butter to go with it. Kind of counter productive to run the oven when we have the AC on but no matter what we cook it's going to be stove or oven. In the process of getting that out of the freezer things were falling all over and slip sliding and crashing around. Me and the freezer were not playing well this morning. Side note: the best ice trays we discovered were the white ones at Food 4Less. Totally random choice but we were down to four or five trays and two of them had cracks in half the cells. These new ones (which jon discovered you need to wash them out with hot water first) release the ice like a dream. But they also slip slide over everywhere. So we can only keep four in the freezer with two each on the door shelves, otherwise like today, ended up with ice all over the floor.

That's basically all for today, wish I had a comfy chair for knitting. The couch is not comfy, the desk chair is okay but also not comfy. The bed is comfy but not conducive for efficient knitting. If we ever got a comfy chair the entire front room would have to be excavated and rearranged. But I would rather knit on a porch or patio of some sort, which there is but is also subject to other people invading my process.

Such is my life, make do with what I have and be thankful for it all. 6 years in the same location this weekend wooo! 

 

Doctor and garden update edition

 Got a call from my GI doctor office explaining they had been contacted by my plastic surgeon about my treatments. She asked me how my symptoms were and all that, told her still going about four or five times a day but no bleeding or pain, consistency is variable depending on what I eat. She did note that I was supposed to have had a calprotectin test done before and I told her yes, it was never collected with the other tests that I did. Oh. So she put the order in for that test to be done because that is an indicator of how well the treatments are doing. The timing for surgery is the issue as it has to happen 4 weeks before or after an infusion. My next one is July 6 which means we're already late for 4 weeks before the next one so we're looking at beginning of August for surgery. Was there anything we could have done to speed up this process? Probably not. They were waiting on me 'healing' from radiation treatment and that set the stage for delay and then everything else that happened that was unexpected.

Cucumber alert! Sorry no pretty pictures of trees or flowers this time around.

We needed to go to the store today anyhow so drove over to Santee to the clinic there, apparently there was also a blood lab on order so got that done and picked up the kit for the fecal test. Tried out a Greek eatery in the same vicinity, not as good as our favorite Greek Chicken but this new place had a Tuesday special for BOGO gyro sandwich. We had to get fries as well but only one order and ate it there, it was alright for my taste, not enough garlic or onion but Jon thought it was great (I think he was just hungry). Turned out to be more expensive than Greek Chicken since they charge 6.25 for a single helping of fries. Regular fries... nothing special. So no, we won't be going there again.

So anyway.... I was moaning to CJ about not having all the supplies needed for that shawl project which is why I rarely ever do specific projects. She then sent me some money to get the things that I needed (love her to the end of our days but I was not moaning as a way of asking for help). I needed the right size and length of circular needle for the project and the right type of stitch markers in a quantity I needed. This was Sunday so I immediately ordered the type of needle I needed from Amazon and unfortunately it was not next day but said it would arrive Tuesday. Drat, oh well. I would wait and get the supplies for the markers. 

It is a crafters curse to know how to make something when you see something for sale online. I needed 12 mostly unique stitch markers but not just the keyhole style loop ones I've been using. The yarn I will be working with is a bit heftier and I wanted markers that stood out from the yarn. If I had all my crafting supplies right at hand they would have been done and dusted in an hour or so. But no... I had 'some' beads, no jump rings in quantity and size needed, no findings in same categories. SIGH. Everything I needed except tools was in storage. I went to the local Michael's which is not the same as it used to be decades ago, selection and prices were horrific. I was forced to shop at the Evil Empire Hobby Lobby on Monday since they're not open on Sunday. It's basically the Walmart of crafting stores with religious overtones. Knowing their policies and history is why I don't shop there anymore. Their geek wall decor inventory has shrunk in the past six years as well so even less reason to visit that store. 

(Side note, it is our 6 year anniversary of getting this apartment, YAAY!)

So anyway, picked up jump rings and some dangly charms that were cute, not too heavy and voila! I also bought a small pack of the 'bulb/keyhole' markers in assorted colors as well.  So that got done in about an hour as expected.  Felt good to accomplish something for that project. CJ is looking forward to doing a KAL (Knit A-Long) with me for the first time. I told her she already has a head start on it but hope to catch up. It's not a race exactly just doing the same project together and comparing notes.

Yesterday I decided to wind the first color of the project into a cake/ball with little problems and cast on the number of stitches I needed using a slightly larger needle then put it aside to wait for the expectant package the next day. This morning had an update from Amazon about my knitting needle shipment. Due to a delay in Rockford, IL I won't be getting my circular needle until tomorrow.  I sincerely doubt it would get here in the next 8 hours from that location so, starting on project will be delayed as well goshdangit. Meanwhile, back at the garden, 

This is most of my tomato harvest so far, I've already eaten about four that have been picked over the past few weeks. These are all just from the last three days and there's still plenty that haven't even gotten to size yet on the bush/vine. So they average abut 1" in diameter and are super tasty, I haven't put them in the fridge because I finally am able to keep them on the counter (as per tomato experts saying they taste better at room temp) since they're so small. I couldn't do that with the bumper crop of Roma a few years ago. These are good 'snacking' tomatoes and since the other bush hasn't gotten any of size yet that are slicers I have to buy tomatoes at the store that are more expensive than usual this time of year. Normally they're .99/lb for Romas and they are now $1.49. That's an extra .50/lb that we usually see in the off season. Thanks to the current ::insert multiple expletives and descriptors:: administration.

The cucumber crop is coming along nicely though! That's the same one pictured above, almost two inches long now and I almost missed it. I am totally stoked about something succeeding in the garden, the peppers are still just poking along putting on side growth and not doing much else. Hoping they catch up in the next month or so and we'll have a bumper crop of whatever peppers they are.  Hopefully and statistically should be poblano and jalapeño. Cucumbers, tomatoes and peppers... shrimp ceviche???

As soon as Jon wakes up from his nap I have to head down and water really well. Should have done that yesterday but wasn't feeling up to that kind of energy. I slept better last night which is not what I was expecting since my feet and legs were all tingly/itchy. Will see how tonight goes as my days and nights are so variable lately. 

I think that's all the news for now, updates as they happen and however the wind blows our way. 

 

 

 

Much fun and muchly tired

Did not sleep as well as I hoped but hope to do better tonight because I am exhausted.

 

Driving California highways for hours will do that to you. It was well worth the energy and gas expended though. Seeing dear friends and new pupper dog, another wonderful meal provided and goodies brought home. 

I think Jon is in love with Marlowe. He's not a big fan of dogs but his only experience has been medium and large dogs. I had to catch this picture because Jon's face was just so precious and he felt honored that Marlowe felt comfortable enough to sit with him.

So almost 2 hour drive up there but traffic was not bad because the fair hadn't started yet. Another two weeks and it would have been ugly around Del Mar. The first thing that i was presented with was a new collection of yarn for a specific project that CJ had started already.

Lovely squishy yarn to make a long rectangular shawl. Each color section gets melded into the next one and it turns out to be about six feet long and three feet wide. Cannot wait!

I didn't take any pictures of our meal but it was delicious, steak corn and potato salad was all very good. Home made cookies of two types, veggie and fruit appetizers, the whole ball of everything. Very relaxed and wonderful weather to boot. Stories were told, lives were compared, so glad to have friends at least a drive away to share things with. 

Again, no pictures because I'm not that kind of person. We were given extra food to take home, a package of chicken breasts, frozen salmon steaks, a big box of Texas Toast, the fruit pieces and just about all the cookies that he (CJ's husband) had baked for the occasion. Our freezer and fridge are stuffed and our hearts and stomachs are full.

The trip home was not so easy. When we were on the way up there I noticed there was a good several mile stretch on the south bound side that was bumper to bumper. For a very long distance. I thought maybe I missed an accident but hoped it would be cleared by the time we had to leave. Well, no sign of an accident but the same stretch was still slowed to a crawl.  I was getting kind of woozy and needed a potty break so we pulled off to the one and only rest stop between Camp Pendeleton and home. Typical park restrooms were less than desirable but it gave me a chance to wake up a little walking from car to restroom and back. 

Then I noticed we were down to a quarter tank of gas and that would not get us home. So, nearest Costco in Carlsbad, got gas, then Jon (aka: Bottomless Pit) felt 'peckish' so got him a slice of pizza while I had another potty break. From there, it was straight shot home with a total trip time of about three and a half hours. Traffic and pit stops added on extra time.

But a lovely time was had by all. Schedule and all things considered hoping to do this again in a few months. Thank you, thank you, thank you.
 

 

Day one of new meds and fast results

So the one RLS med that the doctor and I decided was right and I only had to take it once a day was not covered by insurance. Second choice is one that I take three times a day and on source said with fatty foods if possible and the pharmacist said with or without food. Downside is it is supposed to make me feel drowsy. 

Picture of cactus branching where someone had broken off a branch for whatever reason.

I took one last night around 7:30 and it may have been coincidental but was kind of sleepy by about 9. I slept relatively well, waking up about every 2 hours or so to pee. Only once around 3 did I feel off and not want to go lay down again. I literally shook it off, wiggling my legs and stretching my arms and then went back in and laid down. Pretty much slept through though and again, it may be coincidental since I didn't sleep well the night before. Seems to be the pattern. Will see what happens tonight.

I am able to eat relatively normally without the piece of tooth getting in the way. Not going to be eating any corn on the cob for sure but that's all good. Once again something else I was going to mention and foggy brain can't remember now. Hands are still a bit shaky, right now this minute legs are feeling tingly as well as my feet. Hands actually as well... which I remember reading about that being a side effect or symptom of something.

Still haven't had any sodas but am going to wait another few days to see how the meds work, oh I also was given the okay for B12 and C0Q10. I got the former but the latter was kind of pricey and  didn't have enough money in my OTC account to cover it, that can wait until next month. 

We've spent most of the food money and gotten less than we have had before. didn't buy any chicken parts and forgot eggs but a friend is going to get us some eggs and veggies she has extra. 

THIS JUST IN: Call from my oncologist who had me get a blood test done for various reasons that I was concerned about. Turns out my iron saturation is extremely low which is a contributing factor for RLS and other things like fatigue and low energy. I'm not anemic but my iron is also low (which may be due to me not eating a lot of iron rich food). They usually see a normal number for saturation in the double digits and I'm single digits. So she ordered iron infusions as opposed to pills because with the colitis that may be a factor in the uptake not happening. The first two infusions will be a week apart, she didn't say whether that would be a regular thing or 'as needed'. I'm thinking the latter is more likely. Next step is waiting for insurance to approve then wait for infusion center to give me a call and since my next Entyvio isn't until next month I opted for getting the iron done sooner rather than later. Just have to wait for the insurance approval of course.  

I just KNEW something was off. I have that knack for knowing when something in my body is not right (always thought everyone had that innate sense but apparently not) and the past few weeks it's been feeling more off than usual. Even with the side effects of what I'm taking saying it's the usual fatigue and muscle aches and pains.  This was something else and my body was telling me. I feel vindicated and happy(?) that a reason was found and there is a solution for it. I'll probably have blood checks regularly done to keep track of my iron levels now. Not sure if eating iron rich food is going to help much but will see about that as well. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Yay! Oh and I have more cucumbers on the vines! Tiny, small baby cucumbers which hopefully will have a better chance of being unblemished and unbothered from bugs as the last time.

Jon and i are going up to Orange County on Saturday for another visit with my long time knitting friend and sister from another mister. She has yarn for me and of course a wonderful meal planned along with generally chatting and enjoying the company. I told her the corn on the cob is not on my menu but a knife can do wonders for separating corn from cob. Planning on having a wonderful time and can't wait to start a new project with the yarn.

That's it for now, updates as they happen as usual. 

So far... not much but something

 Biggest news I have is the broken piece of my front tooth finally gave way and I was able to pull it without much pain at all. Surprisingly, it was less painful than getting stuck with a needle and no bleeding. That was my biggest worry about pulling it too soon was being on the blood thinners and all. I haven't contacted a dentist yet of course but now that the loose piece is out, it's not as important. I just have no front teeth at all. So corn on the cob and a hearty sandwich are not in the cards right now. 

 Night blooming cactus again because it's just so darn pretty.

Something I discovered, which I suspected but still not 100% sure is caffeine is what sets my system off. I had no cokes but only for two days and it didn't make a big impact. I had two cokes day before yesterday and oh boy.... I did not sleep at all. Tried to go to bed around 11 but had to get out of bed after five minutes of foot twitches.  My legs were jumpy, feet were tingly, I felt wound tight like a mainspring and was pacing back and forth from the couch to the kitchen for five hours. Jon slept like a rock of course, but I wasn't able to settle down and lay in bed until about 5 then only slept for about two or three hours. I ended up taking a short nap later in the day and felt a little better. No soda/caffeine all day yesterday, crashed rather quickly then woke up about an hour later to pee, slept okay most of the night, woke up in the wee hours to pee again and was out in the kitchen/living room for about a half hour or forty minutes before going back to bed and slept straight for three hours. So I'm doing okay today but my eyes feel gritty still, too late to take a nap so will probably be another early night.

Right now my legs are feeling jumpy and feet are twitchy so I think I need to go pee.

We shopped about half the food budget shopping at Costco today, bought another flat of cokes and two more cases of water, our favorite potato salad, 6 lbs of hamburger and a double pack of lasagna we haven't had in ages. Didn't buy any chicken parts since I still have some of that but will have to supplement with something else later. Two pans of lasagna is a lot of food, that's if I can convince Jon to not eat half a pan in one sitting. One pan should feed two people for two or three days with proper portioning. Luckily he's not big on leftovers, but knowing him he'd take a portion and put it in a saucepan with some water and maybe tomato sauce and make soup out of it. But that's still making food stretch further. 

One thing we haven't had in ages is a solid piece of beef. Not a hamburger, a steak. I would love to treat Jon (us) to a steak dinner somewhere for his birthday in August.  That would be a real treat but with my schedule with doctors and surgeries and all that, who knows what will happen by then.

So that's all the news that's new. So far. Will see how the sleep schedule works out, still no word about the new meds. 

 

 

Possible relief coming and kitchen foibles

 

The moon last night when I took a walk around the complex after dark. Gorgeous night, the air smelled fresh and the moon was a lot more in focus than the picture shows. Need to clean the lens cover most likely.

Talked to consulting oncologist by video and told her about my issues, she was just as perplexed about it as I was frustrated. Told her what I was doing to try and mitigate it with little success. She siad there was a medicine for RLS  related to the dopamine type used for Parkinson's and I told her I'm willing to try it.  Well she put in the request to the pharmacy for it after we finished the call and within minutes CVS messages me saying they got a request for said prescription but would have to check with my provider to confirm it.

Right. That was Thursday, Friday rolls around and I get two more messages from CVS about prescriptions I supposedly need refills on. One they can't refill until first week of June because of insurance or CVS standards (that's fine I still have a bottle of that one) and I have 3 months worth of one that they say can't be filled until August which works out just fine. then the one pill I need refilled asap is my cholesterol med and today is my last dose. Got a message today saying that due to high demand it may take longer to refill. I should have contacted them and asked if it can be transferred to the pharmacy in Santee. But then I would have to change it back again.... so whatever.

Today is Saturday and we got our monthly money so shopping was done. Costco was a madhouse as it usually is around noon on a Saturday. Jon loaded up two carts with supplies that he usually gets (don't even want to guess at how much it was). We then stopped at our favorite sandwich shop and I ordered an Italian style sandwich as a salad since no front teeth makes it extremely difficult to gnaw on bread. So that all worked out okay since I had a 'reward' card from them and it was filled so my salad (which is priced as a 'regular' size sandwich) was free. I might have to do that more often with the plethora of dressings they have available.  

As for other relief, I have been looking at my billing statement online for the hospital bill I'm paying on and from what I can see, it says it's been taken care of by the High Medical Cost Charity fund. No balance due and the little APPROVED highlight on the bottom. Sooooo if that has been taken care of, that frees up $85 again and maybe possibly I get a reimbursement. Again, won't know for a while on that one but here's hoping. Looking around at another area of billing it says that I have an autopayment coming up for that on June 3 but the amount is greyed out..... that could just be due to it not being applied yet. Typically they'll do an auto message a day or two before to remind you that an autopayment is coming. AMR already did that as that's due on the first of the month oh well was hoping.

Now in the matter of kitchen things.... DON'T EVER store dry goods like baking mixes in proximity to laundry detergent, soap or dryer sheets. This entire double batch of corn muffins had to be tossed and I still had enough batter left for another four muffins. We got two boxes of the Jiffy mix off the community table a few weeks ago and the other day I wanted something sweet and bread like so pulled them out and started mixing. I didn't smell anything really off but then used my finger to wipe a dribble off the pan (between the two left side bottom cups) and then licked it off my finger. 

It was like licking soap with a floral flavor. I told Jon it has to all be dumped and he came around from the couch to sniff the batter and reeled back immediately. SIGH I rinsed off the paper liners and then put those in the trash and rinsed off the muffin pan. What a waste of two eggs and milk, not to mention the muffin liners that I now have to get more of since there's only one left. 

We've run into this problem before with other dry goods and if I ever find out who is doing it I will personally ask if I can come rearrange their cupboards.  Not likely to happen since a lot of times people will bring stuff down there anonymously since most everyone stays in their apartments like us. 

It's the weekend not even the holiday but technically is sort of? Feels like it when I see people walking out of cosco with a jumbo pack of red cups, two cases of water and paperplates for 1000. It's almost graduation time so  I suppose that could be a reason.

I'm having a hard time keeping my eyes open, going to see about a short nap. 

 

 

 

 

Last night was torture and tonight's looking about the same.

 I have constant foot tingles and zaps, restless legs and overall nerve issues. I haven't had any soda today on the chance that may have been part of the problem. Doesn't seem like it though. I double checked side effects of all the meds I'm taking as well as the infusions and none of them have this particular set of issues.

Last night I was tired at least by 11 and when I laid down I thought, oh good.... this feels so nice. Within a minute my left foot was zapping, my legs were randomly yanking up to my chest and general tickle/itchiness of both feet. I was up and down constantly and sat out on the couch for a bit, played on my ipad, brought my knitting out... not until around 5 when I could finally lay down and pass out. Woke up around 6:30 peed went back to bed.  I only had one soda around 1pm yesterday so that's why I thought it might be the culprit especially after I had two the previous day. Caffeine and sugar don't last that long in your system so if that was the cause it should have worked out by now right?

Today even standing and walking my feet were tingling and I do have 'peripheral neuropathy' in my feet going all the way back to my chemo treatments. This is nerves firing randomly mostly on the bottom of my feet but sometimes on the upper side area. I am trying to get up and walk around more so there's less pressure on my butt nerves. Doesn't seem to be helping either, although when I pull my sphincter in it does stop some of the tingling in my feet. Wonder if all I need is a different chair or new cushion. Even as I've been sitting here and typing my feet are tingling and I'm having to move constantly. I hope it's not the lead up to Parkinson's. It's not involuntary movement as I'm sitting here it's just bouncing my legs so the tingling isn't as bad.

Some good news though, I got approved for the the charity help for my infusion costs, yay! I got a message from the app online and then I downloaded that but they'll be sending me a paper version for my records. I think it also says I can take that letter to the finance office for any other outstanding bills I have. Will read it over again but that would be wonderful too. I don't know if it'll help with the AMR but may help with the $89 I've been paying. If I could get that taken care of I'd get that money back....

So this week I am talking to my oncologist not my primary but will tell her what's going on for sure. She'll likely give me the results of the CT/PET scan I had.  

Okay annoying news and good news done. 

Olivia I have enjoyed your travel journals! I didn't want to interrupt the flow with a return email but will do that once you are finished! Welcome home!