Hospice

Well, I called Larry's oncologist today and got him to goad the folks at the VA to contact Hospice. Two hours later, the intake nurse was at our house! Larry finally got out of bed about 4pm stayed up maybe 30 minutes and is back in again. He hardly ate anything today and is having trouble walking down the hall from the bedroom to the living room. Think we will have to use the wheelchair soon. Still not taking pain meds, says he doesn't want to be a zombie. That is his choice to make. There is a nurse on call 24/7 so I feel better as I have someone to call. There will be a nurse come a couple of times a week and also a home helper to give him a bath etc. I suppose I will begin to have better input once they really get started. I knows it just feels comforting to have someone to ask and not have to wonder if I should haul him to the hospital. The worst parts of this are the not knowing and the not being able to DO anything to help him feel better. Rob and I are going to remove and rearrange some furniture in our room so I can put an easy chair in for his company. I just keep shuffling someday perhaps I'll be finished--nah! Not in this house anyway.

Saturday

We had some very nice visitors this morning, Mary (from Embarq) brought her Mom and Sister to see Larry. Mabel, that's Mary's mom has sent Larry so many cards over the last year wishing him healthy and has wanted to meet him, he wanted to meet her also as the cards meant so much to him. We had a nice visit, Larry managed to be mostly present. The morphine is causing him to be more and more out of it and sleepy, dizzy, etc. So much so that it scares me. I just felt that he was taking such a small amount that he shouldn't be so out of it and that maybe he was dehydrated since he hardly ever drinks a whole glass of something so I took him to the er. They gave him iv fluids said his kidney function was good and his blood work good except for his INR--should be a bit over 2 and is 11. This causes a great chance for bleeding if he should fall. The doctor and I talked over admitting him or sending him home, he wanted to come home and I knew he'd rest easier here so I brought him home. The Doc and I also discussed discontinuing all his meds, other than pain, which apparently Hospice will do when they become involved. I think we'll do that and stop the morphine see if hyrocodone will handle the pain without all the grogginess. I also went to the grocery and bought a variety of drinks to try for taste, I did tell him to drink it like medicine even if he didn't like it! Calling his oncologist will be on Monday's list as well. Not much on my list accomplished!

Lunch and Fabric

Larry and I went for lunch with his pals from Embarq today. They are all being moved around or laid off with the Century Tel merger (sorry gang.) We've gone over and had lunch several times, usually we go to the Cheesecake Factory but today we went to Red Lobster. We took the Brown Bear Quilt to Tonya for her baby (we missed the baby shower--Larry was in the hospital.) I think she liked it, she cried! When we got back Larry took a nap and I sorted fabric. I have 9 -11 gallon sized boxes of fabric! Some of it may be from the 60's for sure the 70's and 80's--is that vintage yet? I'm sure I gave away/tossed alot of fabric when we moved from the big house and still I have 9 boxes! I still haven't added the fabric that's on my sewing table either. I do have some more sorting as I want to sort the cotton fabrics by color and fold the smaller pieces to fit into shoe boxes so I'll empty one of the boxes that way. I guess I need to cut some squares and make some scrappy quilts! Then I need to deal with the scrapbooking stuff and figure out how to shelve all this stuff--I have a shelving unit on wheels I had thought to use which I was then going to hide behind a folding design wall. I have to make a much bigger mess before I can finally clean up! I actually like these kind of projects, when I finish I can really say I accomplished something! Right now it's nice to have something I can control.

Wednesday wanderings

I noticed that my blog has become very depressing lately with all the medical stuff, a real life bummer! I will try and tone it down now, there won't be much to report anyway for a while. I am feeling much better today and am typing with both hands--although I keep hitting the cap lock by accident! I don't intend to shout. I have very little pain, just a tug now and again and I'm enjoying the challenge of doing things with one hand! Even though I am very right handed it's amazing how many things take both of them--like doing dishes, or pulling up one's pants! This afternoon I may take a nap on the basement sofa--my favorite napping sofa-- or not. I'll definitely begin sorting fabric. My current arrangement for sewing and research just isn't working well so I'm trying to come up with another, another room would be nice but totally impossible!

Fall is coming soon I think, unusually soon. I can't believe how cool this summer has been, one to remember and talk about! I only hope frost holds off until it's usual time. Fall is my favorite season, except for leaves-raking them that is, I love looking at them in their fall colors.

Carpal Tunnel Surgery

It's evening now and I think the chemical stew within is beginning to subside. Not taking any more pain pills as I don't like the way they make me feel--all wiggly and unable to focus without making myself slightly ill. Surgery was successful, Dr said I had a really thick ligament in there, whatever that means, I'm not to lift with that hand things over a pound etc, ice it, you all know the drill for a week then I go back to have the stitches out. Until then I have a lovely bandage on my wrist. I can still hold fabric and type etc plus I pulled out some boxes of fabric to sort so I shouldn't be bored. I'm trying to organize my sewing area and still bringing in things out of the trailer. Some of that will be on hold now but that's okay! Tonight more vegging and ice.

Report on Doctor's visit

Okay, we're home from the VA, finally, and I've had some lunch so I can tell everyone what's up. The news was exactly what Larry and I expected to hear-he has months, very few months. We saw the CT pictures and his liver literally does look like swiss cheese and the spots in his lungs are larger. Dr Allen found his liver larger than he expected on exam. The Radiology report is still not in nor is the biopsy report. Dr Allen said he doubted he'd have done a biopsy as he is 99% sure it is a sarcoma progression. The docs last week kept saying that a sarcoma wouldn't grow this fast but it can and did in Larry's leg so it can and did in his liver. Chemo is an option but it most likely won't help and could possible have such an impact on his immune system that it could shorten the time yet more or just make the time miserable. Unless the biopsy report comes back as something else we will be talking to hospice in the next few days. The end game is that his liver will fail and he will become unconsious and slip away. I'm not really phrasing this very well and I'm sorry but I can't think of anything better, Dr Allen was honest and I will be as well. I am still not at a point where I can talk about it much but I'll get there and will continue to focus on the next thing while we try to enjoy what time he has left. On that note Dr Allen said he could have all the ice cream he wants!

Today I made this in my front garden for the new bench Larry has made for me.














Then I turned these














into these 7 quarts of tomato puree for the freezer. Boy did they smell good while they cooked.















Then, I gave the dogs a bath. Nothing looks as sad or pathethic as a totally wet sheltie!

Busy Girl

I have been very busy the past two days! First, I have another finish for August. Last night I finished sewing down the binding on this Brown Bear Crib quilt. It seems I sew in spurts! Or perhaps I'm just staying home more?

A whole day at home!

Today I spent the entire day close to home, excepting a quick trip to the grocery for eggs, bread, and melons. I've finished quilting the first of the Brown bear quilts, which I did by machine. I can't say that I'm overly fond of either the process or the result! I am sure the result would improve with practice but I really don't care for sitting over the machine! I am in this case saved by the cuteness of the fabric. Photos tomorrow when the bindings on. It just keeps raining, soon we will need a boat! Perhaps a canoe? Larry is stronger here at home, stayed up almost all day and without more than the long acting pills until supper time. I did some housework getting ready for the visitors to come tomorrow and this weekend. Well, think I'll go cut binding.

At home

I have to say that getting out of the hospital is no easier than getting in! The VA has more hoops to jump through than most but we have finally navigated them. He fell at the hospital this morning, early, and there was talk of a ct scan as he hit his head but apparently they decided no as we are home. He nearly fell coming in the house through the front door but caught himself. He's so doped up he can't remember things and his speech is slurred (he says that's dry mouth, who knows.) Anyway he's resting in his own bed surrounded by his cats! I may have to have a nap as well, migraine today and didn't that make the whole hospital thing fun?

Larry update

This is, I hope, the last post I'll write while Larry's in the hospital-this time. The Doctors want to watch for any complications following the biopsy so he has to stay until tomorrow. He was lucid by the time the doctors came but still had enough pain medication from the procedure to be feeling good. I think when that wore off he probably got hit again. The main concern I have with him at home is managing the pain so the doctor and I discussed it and they will give him a long-lasting morphine and hydracodone, I hope that works. He returns on Monday for a previous appointment with his oncologist, I hope we so results by then.

Laundry etc waiting so I gotta go.

Back in his room

As I typed the last of the other post the elevator doors opened and they wheeled him out! Sleepy from the drugs but back in his room. I really don't know what happens next so I get to practice that new skill and wait!

Monday, post biopsy

As time passed this morning and 11 am approached, I began to wonder if Monday would be a repeat of Friday. I'd already told his nurse that I would be raising a ruckus if he had not gone before 12 noon but shortly after said 11 am the call came and he was loaded up for transport to radiology. After a few minutes wait they came out and wheeled him away and I commenced waiting, one of my new best skills. It seemed like a long time before the tech came out to say he was in recovery and that they had "gotten" the biopsy, I'm not too sure what he meant but I'm hoping it means they got enough cells for pathology to determine the type of cancer involved. Results could take anywhere from 1 day to 2 weeks depending, largely, on how close the pathologist "guesses" which stain to work with each time. After I saw him in recovery I came back up to the 8th floor waiting area, where Beth and Co, Larry and I, Rob and Tanya sat on Saturday evening for a visit. I'm sitting where they will wheel him by me on his way to his room, waiting. There is talk that he will go home yet today or perhaps tomorrow depending on having pain under control. We have an appointment with his oncologist on Monday, we think we might hear about results then. (As of now there is still not a final report on last weeks ct scan. I may have to be a little fierce, I hope not. It really isn't my nature to create discord and I really hate it so I have to be moved pretty far to stir things up! Course I'm already pretty stirred up so who knows!)

Sunday evening

Today's report: Larry's pain continues to increase daily so today they took away Viocodin and replaced it with both oral and IV morphine, Oral didn't manage it alone and the IV makes him nauseous so then he has to have IV meds for that. The combination just sends him to la la land making little z's! He's scheduled to be first in the morning for the biopsy, one of the doctors said that if they didn't take him early she'd have to put a hit out on the radiologist, to which Larry replied "Or my wife will" doctor said I was just about to say that! They know me only too well!

Had several inches of much needed rain overnight, and the thunder has begun again. Now there are flash flood warnings out. Feast or famine!

I finished one brown bear top and the other is ready for borders. I hope to get one sandwiched tonight and maybe a little stitching but I have some bookwork to do (like paying bills, which I have not done for like YEARS!) To do that I have to clean up my desk, may be a long night! I want to be at the hospital by 7:30 so who knows. Stuff just piles up and has to be dealt with regardless. What a bummer.

Saturday morning update

I'm just back from the hospital, he's doing as well as he can, I suppose. The pain in the liver area continues to increase, so more pain killers are required and they make him sleepy. There was some talk of him coming home as he has an "appointment" at 11:00am on Monday for the biopsy. (Perhaps my crankiness has paid off we shall see. ) However, the main internist wanted him to stay and even though I was not present I agree. They can manage the pain better there than we can here, his port will not have to be re-accessed (unless they keep him longer than Monday), he doesn't have to drive(well ride), wait etc. All around I think it's best. His temperature was down, blood sugar up. Sorry, but I can't get too churned up about the blood sugar thing as diabetes is not what is going to kill him. Too many other things to deal with. I'm taking him dinner later: bacon, egg, lettuce and tomato sandwich and a strawberry milk shake

I have tons to do but will work on the brown bear quilts as one is a gift for a soon to be born baby. I got one top mostly together yesterday so I'd like to finish it and the other then decide which top to quilt first. I'm going to give machine quilting a whirl, nothing more than stitch in the ditch just yet! Got back to my walks today, really felt good even though I missed the heron.

Friday's Larry Update

No biopsy today either. They left him without food, etc all day without telling him they wouldn't get to him today. I was really cranky about that last bit. I understand that things happen in hospitals that cause plans to change. I also understand (although, I don't especially like) this hospital's plan to "work in" the in-patients around the out-patients already scheduled. BUT, I do think some courtesy is required, in that a simple telephone call to the floor nurse with a "We aren't going to get to him today let him eat" would have made life better than our hanging about all day wondering until at 4pm we said, "They aren't coming for him today are they?" I voiced my frustration with this lack of courtesy to most anyone who would listen, including a couple of doctors and a patient advocate. Also considering some email/letters to some "higher-ups." So he will be in hospital until Monday earliest, if he gets the test then. (Which is not guaranteed.) There is no chance of his getting the test on Monday (or any day next week) if he comes home, which the doctor offered, so we decided to roll the dice in favor of his staying in. Also he is now running a low grade temp (and he never runs a temp.) I took him Kentucky Fried Chicken for dinner, I've taken him food every time he's been in as their food is awful. This time there are so few things he can eat and I know them better than the hospital so tomorrow I'll fix him breakfast and dinner and take them to the hospital, probably take mine as well to keep him company.
So, after a crummy day, I'm going to go sew small pieces of fabric into strips!

Thursday evening

Nothing new to report, he's just lazing about in his bed (his hot bed) waiting for the biopsy. There is the chance they may let him come home tomorrow for a respite. The report from the biopsy won't be back until sometime next week and treatment won't begin until that's back and maybe not then if they don't get a large enough sample. You'll remember with the leg it took three tries, 2 with needles and one with surgery, I hope they get enough. They give him some very happy juice so he doesn't mind the needles so much except in his head. Anyway, Oncology gets the final say as to whether he comes home or not, it depends on how well he tolerates the procedure and if there are complications.

Thursday noon

Not much happening today, can't get the biopsy in until tomorrow so nothing can be done. Apparently, the liver looks like Swiss cheese (in places) which is not normal for Liposarcomas. So we wait. Larry is feeling much stronger this morning, more his orneriness! Already starting to ask repeatedly when he's going home--I'm for him staying since the IV fluids are the only thing beside pain meds they are doing for him at the moment. I'm afraid if they take that away we'll be right back at the beginning. Still has alot of pain and still can't eat much of anything--we're bringing in contraband! (strawberry milkshakes for one) I'll probably update again tonight but it is doubtful that there will be real news. I've taken to a rolling carry on bag to bring up here as I have so much stuff, my backpack gets too heavy!

Evening update

I left the hospital about 5 pm and a doctor came after I left, of course. The oncology fellow returned to tell Larry that they wished to do a needle biopsy of his liver to be certain it was the same cancer as is in his lungs and was in his leg. They hope to do this tomorrow, a different cancer would mean a different course of treatment. the pain in his back and side (where the liver is) has been treated with pain meds and he is resting better. Makes him sleepy but he can sleep so that's good. The IV fluids had already helped, he isn't so gray colored and has a bit more energy. I seriously doubt he could walk the hall without draining what "go" he has but he can sit up on the edge of the bed. Things look a bit better tonight, or I just have my head around it better. We weren't really surprised and thought we were prepared for the bad news we knew would come one of these days but it was a real jolt emotionally for us both.

I have some housework to do am trying to get just one or two things done in the morning and evening house wise, one thing in the yard and one in the trailer. I cannot live in a pigpen! I'll be heading in again about 9 in the morning and again will take the laptop and data card as it worked well. Am currently charging my phone and will take a charger along (geez, I need a rolling suitcase for all the stuff I take down there!) so it won't die as it did today. I finally got into my email tonight, hoping that doesn't change. This is my last update for today so signing off.

Oncology update

Okay, oncology was just here and the plan will probably be to re-start the chemo he was on last, and that worked, hoping that it will work again to both prolong his life and ease some of the pain. We still don't have a final report on the CT probably won't hear until tomorrow. They are consulting Dr Allen who is out of town but if he agrees they will begin again, probably tomorrow, in hospital as he is already starting out with some of the problems chemo caused for him. There is NO immediate danger to his life. He will probably go home next week. He has asked that you wait to visit until the weekend, he'd like to gain a little strength first.

Morning update

General doctor was just in. Liver enzymes still very high and blood sugar elevated some. Preliminary CT Scans results indicate that all tumors in lungs have grown to dime size, she could not count the number, and that a tumor in the liver has developed and grown. The oncologist will be in later with treatment options and final results. Altogether not good news.

On another note, I can't seem to access my email so please leave me comments here (Scott that's for you)

Will update later, this data card is working like a dream.

Larry's in the hospital again

After several weeks of stubbornness on his part I told Larry last night that if he wasn't feeling 200% better today he was going to the doctor. Well, I said Wednesday latest. If you saw him at the wedding you know how bad he looked and obviously felt, and I've been getting "horror" stories about him from people as well. He's been very tired, somewhat short of breath, has pain in his back and has been unable to eat much of anything-so he's lost 20 pounds in 2 weeks. So, today we took Steve and Candice to the airport and then went to the VA. They did some preliminary tests (blood, urine, etc) and determined that his liver enzymes are completely wacko--should be 40 and are 580. His gall bladder is out of wack as well by about the same. So without further ado they admitted him. Of course, we arrived at 1 and he was finally in his room at 6:30. He is having a CT scan tonight from his shoulders to his knees as it's the most likely to cover all the possibles the quickest. (No one could tell us why everything was out of wack yet.) He had to have a small IV in the arm which took three tries, drink yucky contrast liquid-and that made him sick, and still has to have his port accessed for an IV fluids and bloodwork. He flips from being hot to freezing every few minutes as well. He has had a very bad day.

I'm planning to take my laptop to the VA tomorrow with the data card so I can update this sooner, so keep watch. At the moment, he doesn't seem to be in immediate danger. He's in room 8282 but I forgot to write down the phone number (will blog that later) and his cell is dead so he's sort of out of touch, maybe he'll be able to sleep. I have no idea how long he'll be there at the moment, at least until they figure it out and get him feeling better. Believe me that's everything I know, wish there was more but there just isn't yet. You know what I know.

August sewing, goodies for California Girl

After Months of no craft sewing (only dressmaking) I finally got to play with the machine! I made all of these for our little California Girl. It was fun. Next up: two brown bear quilts and a denim quilt.

Wedding weekend!

Scott and Brianna's wedding was beautiful on Saturday, it suited them completely. Simple yet elegant. She was a beautiful bride and he a handsome groom. Then there was a bash of a reception! I think everyone had a ball, I know I did. Danced with all my boys (including Brayden and Kolby) and generally lived it up. Have the blisters to prove it! Brayden and Alayna were dancing fools! Even though they were up "Way past my bedtime, I should have been in bed HOURs ago" (according to Brayden!) After we went back to the campground I took the dogs for a walk around camp in my long black formal and turquoise crocks, I bet that was a sight to see!

Sunday, we had a family gathering at the park to celebrate California girl's near arrival. We have everyone together so rarely that we have to really pack things in. Gifts were opened, pink was in limited sight as requested. We devoured subs and cake before 12. Unfortunately for Brayden there was no dancing. It was getting really hot so we packed it in, went back and broke camp to head for home.

We are now wiped out and recovering, but we had a really great time so it was worth it.

I've been busy!

I haven't posted in a while as I've been busy painting window trim and sewing, plus a little gardening and getting ready for the California Kids and Scott and Bri's wedding. I did do a little cross-stitch but I haven't a photo, maybe later. The sewing I've been doing are gifts for California Girl and are not finished, I don't think I'll show them until her parents have seen them. We are in the trailer parked at Finger Lakes State Park until Sunday, our hotel room for the wedding. Tonight we are meeting Larry sister, Kris, and her hubby Owen for dinner and a visit something we are trying to do more often. Tomorrow, I'm getting a manicure (I've never had one) and doing some other wedding related errands. We are really busy this weekend, which seems to be the norm when we come to Columbia anymore! Getting hungry!

Waterfall park

I see these water falls every day from across the lake and then from the middle as these are really an upper and a lower falls. I see so many unusual things I've taken to carrying my digital point and shoot. The ducklings and goslings are practicing their flying and often fly so low their wings leave splash rings in the water. I miss this when I don't go walk.

Walking views

This is the Great Blue Heron I see every day when I walk. Usually, he's in this same place so the fishing here must be good. Sometimes I see more than one, one day I saw three. I love these birds, I especially love to see them fly with those great long legs trailing behind! I will miss them when they fly south this fall.