I have lots of pictures today!
Thought I would take before pics of the patio.
I have lots of pictures today!
Thought I would take before pics of the patio.
I have good news to share this week! I'll make it short and sweet. ;)
First of all I did the coconut oil and Band-Aid treatment and my finger was all better in two days!
Dagan took a few days off last week (he has accumulated so many he needs to use some, I guess) so he brought me to my appointment again last Thursday. My port was acting up. She tried to flush it four times but it wouldn't work. Had to shoot some heparin in there and leave it for half an hour. Which meant they sent someone down from the lab to draw my blood for the tests. We were thinking--oh no! This isn't a good sign.
But--tada! This time my ANC number went from the .7 to 1.3 and I was finally close enough to be able to get my infusion! And after the heprin treatment the port worked fine. Whew!
The not so good news was that the only doctor there at all for my next visit in three weeks is Dr. Kobrossy. Since he's the only full-time oncologist it was bound to happen at some point...but I am not looking forward to it. And I plan to more or less demand he keep his (blankety-blank) mask on.
Dagan came in afterwards to do the helper tasks (trash, vacuum, spot bot, water plants, etc). But this time he swept up the accumulated seed shells since we had snow again a few times. I have not put out any seed on the patio since then. I want my patio back for the summer--LOL! (If I do put any out I will toss it out on the grass.) Dagan and I had another nice visit--albeit with masks on--LOL!
This whole cancer adventure has been such a total roller coaster ride, as you all know. I was so thoroughly exhausted that after Dagan left I took a "nap"...for 5 1/2 hours! Still slept 7 1/2 hours that night, too. I think it all wears on me more than I ever think it does, you know?
I had a pajama weekend, believe me!
I suggested to Leah that since it usually doesn't take long and she just has to sit in the waiting room at the hospital that she could just wait in the car. Less exposure for her, you know? She agreed...and it was busy. Always busier at the hospital, it seems. I was in and out pretty quickly, though. I know the routine and dress with no metal whatsoever so I can just jump straight on the table.
Leah came in afterwards when I got home. We went through my vitamins and supplements. (She knows more than I do on that score and maybe they have been helping, right?). I had a list of questions and things to chat about. Hadn't seen her for so long! :) :)
Oh, and BTW--was me that didn't want Leah cooking for me after I had started to feel better. Like I have said, I usually think I am doing better than I am or can handle more than I actually can. I have truly learned this about myself going through all of this--LOL! But--on the other hand--the optimism keeps me going. Even when it is probably ridiculous sometimes. Like I just ordered a couple of stamps to use making cards...for when I am better. Even if I haven't been feeling well enough to work on anything much for all this time since I was diagnosed last June...and I probably wouldn't have finished the first set of bookcards even yet if Leah hadn't helped me with them...watching the Wanderlust videos every week and ordering a little something here and there for when I am better...makes life feel more normal, you know? I will be working on bookcards again...and other cards. I will get out my art stuff to play again. I just know I will. :) :)
--the results of the CTscan online:
The 1.2cm tumor has shrunk to .8cm.
The 8mm tumor has shrunk to 4mm.
No other signs of cancer anywhere.
I was so happy I couldn't sleep last night till almost 4am--ROFL! Just so grateful for everything and everybody...and so very glad to have so much good news this week. Finger better, got my infusion, and tumors are still shrinking! (I am happy dancing in my mind right now--LOL!)
Oh! Oh! And how could I forget Miss Annie! She's been doing a little better! She's even started jumping up on my chair via the footrest now fairly regularly. Nothing beats finding a purring cat sleeping with you in the middle of the night.
Oh, and I also forgot to show you my Mother's Day card. This year Ian and Liam made them. Mine was made by Liam...and has he ever improved on writing his name and drawing since last year!
I did that load of laundry and baked some fish. Dagan came over after work and we managed to get what I needed for Federal Housing all printed off but the printer is not fixed. Kept going offline for some reason...even right in the middle of a job. Made no sense and Dagan could not figure out why it was doing that. So as a last resort Dagan updated me to Windows 11, I believe it was. They've been pestering me to do that for months. Who knows if that will help or not, but I managed to print something since...once...so we will find out.
Leah dropped off a few groceries from Cashwise pickup.
On the way to the mailbox I ran into the maintenance man in the hallway and told him I hadn't even called yet but the washer was still leaking. Wasn't making the terrible loud noise it had been when spinning, though. So he stopped by late in the afternoon and it was a loose hose.
Total pajama day. Started to watch Ozark.
Dagan took me to the clinic again. Was a day of mistakes.
First had the port set up and blood drawn. No doctor visit because just a yes or no for the infusion--so we went back out to the waiting room. David (nurse) came to get us to take us back. We found an infusion cubby and David said the bloodwork was fine. What a relief! But then a lady from the pharmacy came down to tell him--no--the numbers are too low. Turns out David had been looking at the wrong absolute result!
There are five absolutes they test for: Neutrophils, Lymphocyts, Monocytes, Eosinophils, and Basophils. My one that is below normal is the Neutrophils or ANC (absolute neutrophils count). Supposed to be minimum of 1.5 (not sure what they measure). When I almost wasn't able to get my infusion it was 1.2--but they let me get it anyways. Three weeks later it was .8 and now a week after that it was .7. David had been looking at the Lymphocyts--which is my only absolute that is in normal range. The last three are right on the minimum line. Nothing I wanted to know about in my lifetime--LOL!
Anyways, the neutrophils have something to do with the white blood cells ability to fight off infection/bacteria. (I searched online to find out what the heck it was.) If it gets low enough it's called Neutropenia. Below .5 is what I saw as dangerous--where you can lose your ability to fight off the natural bacteria in your body--such as in your mouth and digestive system. So you can get mouth sores or diarrhea and worse.
One of my sweet pen pals (Joyce B) emailed me earlier in the week to tell me she'd looked up what could help raise the ANC numbers--vitamin C, E, B12, and omega-3s for example. I also went online to research that and also how to improve immunity in general. So, since last Wednesday I think it was, I am taking some extra vitamins and supplements. Can't hurt!
Anyways, made an appointment for yet another Friday, cancelled the follow-up one in 3 weeks, and headed to my place. Dagan helped with trash and a really awful job that is a pain in the patoot--cleaning blood out of the bottom of the frig that leaked, dripped, and dried. A mess! (So much for being vacuum-packed.)
We did have time to chat during all of the tasks for the day. Annie is doing about the same--BUT she even jumped up onto my chair from the footrest!! [Has done so three times now! The last time I saw her wanting to try so I lowered the footrest a bit to make it easier for her. :)]
Made soup. Had some frozen pulled pork I wanted to use up, mixed beans, lentils, peas, carrots, and some crushed tomatoes. Been a long time since I made soup!
So, Leah dropped off food and a few supplements she had that I didn't. It was sprinkling and the boys were excited to have their clear umbrellas full of raindrops. She came to the patio door for the drop off so I got to see the boys from a distance. :)
That night when I went to add the upcoming appointment to our shared google calendars...I realized that the lady had made the appointment for two weeks later (13th) and not for this Friday (6th). ?? So, I knew I had to call Monday to find out what is going on. Another error from last Friday? (Yes, it was.)
All of a sudden yesterday my finger started swelling up and is red on the side where it had bled where I pulled the loose skin away. Something my body normally has dealt with all my life. I did have this happen once over 40 years ago.Took those pics last night. Can you see how swollen that ring fingertip is? Good grief! Oh, and I noticed I still have some blue ink under my little nail--LOL! Fountain pen ink can be messy. I really dislike inky hands--that's why I usually use a syringe to fill when I can. But yesterday one pen was empty that can only be filled by dunking it into an ink bottle--and I always seem to make a mess of myself in that process--LOL!
Anyways, this morning I had to call the clinic about both the appointment and my finger. Took me over 20 minutes (on hold twice because I needed to speak to an actual person in oncology) but I finally got through...and then they put me on hold to ask McCune about the appointment issue. Yes, I needed to come back in this week...and this time he wants to see me, too...the usual appointment sandwiched between lab and potential infusion.
They were full so I have to go in on Thursday morning. Leah will take me this time. I convinced the lady to leave the appointment for the 13th as it is--just in case--so I will already have a Friday afternoon appointment if I can't get the infusion this week. Can always cancel that one if I do get the infusion this time.
The finger. Well, I had put coconut oil (natural antibiotic) on it and a bandaid last night. It was not quite as swollen, red, or painful this morning. I am supposed to keep a close eye on it. If it does not continue to get better or even just stays the same I am to go in to have it looked at. She reminded me how I could have a hard time fighting any infection. Yes, I know...I know.
So I will rewrap it with fresh coconut oil early in the evening to get a good look at it...but it feels better than it did and doesn't seem as swollen. Yes, I am judging with a bandaid around it, though--LOL! Who knows what the week will bring as far as this goes now. Hopefully all will go well and it will heal. (Antibiotics can really do a number on me with my touchy gut issues so I'd rather not have to take any.)
Then...Blogger has been a royal pain. Many of you have also mentioned having issues with making comments. Well, I also get notifications of blog posts by email and I am getting one email with anywhere from three to ten post links! Especially with people who post more often. So I read them but maybe only comment (or try to) on one or two of them. I am not sure I am getting all my notifications, either. Maybe they will straighten that out one day, too.
I will likely not post until Tuesday next week. I have a CT scan scheduled for Monday the 9th. Unless it gets cancelled because I haven't had my next infusion--but I will make a stink if they suggest that. You can bet on it. I want to know where I stand. Anyways, I do want be able to let you know what they found out and I can read online usually within a day or so. So, could possibly even not be posting till Wednesday--if I don't get the results (might as well wait till I can tell you the results of the scan) and I do have Katie coming to clean on Tuesday. So don't worry if you don't hear from me till Wednesday. If you haven't heard from me by Wednesday--okay, then you can worry--ROFL! Just kidding--I don't want you to worry about me. :)
I guess that's it for this week. I'll see you later next week...hopefully with some good news! Fingers crossed and say a prayer. :) :)
*love and hugs*
PS I have no idea why there's a highlight over all my words?? Can't figure out how to get rid of it. Sorry. Blogger--Blogger--Blogger!! Yup! A pain in the patoot!!
I managed to get laundry done and keep up with the "have-to"s. In fact I am back to doing some laundry this afternoon because I really don't want to get that far behind again where I have more than two loads. Becomes overwhelming when you live in low gear. So I am aiming for one load at a time for a while. ;)
Surprise--Dagan had the day off and wanted to take me to my infusion appointment on Friday! That was a treat. He finally got to see how the whole thing goes with his old mom. :)
People were teasing him--"You're not Leah", etc. I introduced him around. We went in to get my port set up and blood drawn. Had David for that and he was saying to Dagan how strange this must all be for him or something like that...Dagan said how he was very used to hospitals...and that opened that keg of worms--LOL! Dagan and I were talking about his heart and how he wasn't supposed to live and how many pacemakers he's had and how he was one of the first people to have "angel wings" used to close the hole between his top two chambers (not called that anymore--doctor sold the patent)...and we left the room arguing about how old he was when he collapsed at the golf course driving range and ended up in a wheelchair for a few months before the angel wings were put in at University of Minnesota hospital...
We do have some strange-to-other-people mother-son conversations--with a lot of laughing.
Then we went back to the waiting room to be called to see Dr. McCune. My bloodwork looked good and he said I could make an appointment for a CTscan to be done in the three weeks before my next infusion. We discussed the possibility of IF (a big if) the tumors did disappear whether I could stop the Keytruda treatments. McCune said he would check into that with people who were more in my category. Admitted he didn't know enough about stopping treatments if there were no tumors. I like that he is open to suggestions and listens.
Then we waited there in the doctor's exam room for the next step--to be taken to the infusion center.
BUT--one set of tests hadn't come back yet on my bloodwork and another nurse came to tell me that I couldn't get my infusion. The count that was low last time to where I almost couldn't get it, if you recall. Well, this time it was even lower. This has something to do with the ability to fight off infection. Not the actual white blood cell count but something else.
Anyways, it is a good thing I had that feeling I should be in quarantine the last month or so and have been extra careful. They don't want me catching anything--bad cold or whatever. I'd have a hard time fighting it off.
Anyways, the nurse (I am so bad at names but I have had her many times and she's a real sweetie--Kirsten maybe?) asked Dagan if he'd like a tour of the infusion center since I wouldn't be using it after all? Sure! So she brought us back and Dagan got treated like a rock star! Was so funny! All the big grins and welcomes! Turns out someone said something to him about his heart--so David had filled everybody in apparently. ROFL! It was really sweet and funny, too.
After all, he truly IS one of those "miracle babies" all grown up and they still don't know why he has done so well. Studying him now, actually. When he was three months old and we got the diagnosis any kids with a similar series of defects usually died before they were two--most way before--and there was only one girl alive who was five who lived in France. (I often wonder what happened to her.) His heart was already three times the size and pushing into his lungs--and he had the tail ends of pneumonia. They sent him home to be with me for a while--a day, a week...possibly a month.
The next time he was in the hospital he was 2 1/2!
His patched and re-patched up heart is still going strong and is totally and completely embedded in mine. :)
Anyways, now I have to go back this Friday for bloodwork...and hopefully will be able to have an infusion. No doctor visit this week. Will just be a yes or no from the bloodwork.
I have a tentative CTscan appointment on Monday the 9th of May. Supposed to have a scan after my next infusion but I think I should have it regardless, of course. If all goes well I will be then back on the every three week infusions. All up in the air right now.
Dagan came in afterwards and did the tasks (trash, vacuuming, getting high up stuff). We sat and chatted a bit--with our masks on. Despite the bad news...it was just a wonderful day. Still makes me smile to remember how the staff greeted Dagan like they did. Even people I have had no contact with at all--LOL!
We had rain--and that night we even had thunderstorms.
Been chilly and snowing and raining and melting.