Tuesday, January 31, 2017

Is it only Tuesday night?

Can you tell I'm rather bored blogging so much? But it keeps my mind occupied and me from napping so I will sleep tonight. I'm still on IV's but not so much so I should be up every half hour in the bathroom. The doctor that came in this morning told me to continue to re hydrate but the water I drink won't make a lot of difference so I'm not pushing it.

I think I did 6 laps today, each time I thought it would be the last but then would rest and go again later. I can feel it in my calves but no pain, no gain and I find I don't have to concentrate so much. I did a half lap with the PT and she asked me if I thought a brace would help my right lower leg, I didn't know so we left it like that. I think I have just lost so much strength, it will take time to get it back. I've been very sedentary for awhile, it caught up to me and now I have to be determined to work at getting it back. At home I will have to just walk the house and up and down stairs and make the best of it. She had me do exercises that were rather hard and I asked her how often and she said "Oh, once a day." Well that doesn't seem like much! But she is the doc!

Food is a challenge, I'm hungry but not much tastes good, I try and try and for Bruce everything tastes good. I finally had my fill of Boost or Ensure, it's just too thick and cloying but they have Carnation Instant Breakfast and that goes down well.

I got my catheter out, I envisioned having to go to outpatient but about 2 PM in walks a doctor with a bunch of stuff, shot me up with lidocaine and before it had a chance to work, ripped the little sucker out, OUCH!!! Bruce stood right there and watched him! The nurse was not too happy, she would have liked to had a heads up and given me something ahead of time but around here, sometimes they waste no time and are off and running to the next patient. I should have had a number to call and warn them he was coming. Luckily it hadn't been in that long that the skin was grown around it, Bruce said the tubing was about 10 inches long. It is a relief to have it gone and it is an infection hazard that has to be flushed everyday so better to be gone. The nurses had a pro-con discussion about leaving it in. One said they would need it to return the stem cells but I asked the Dr. this morning and he said as long as I had a port, they can use it, that is what is running my IV right now. The port is nice because once it it de-accessed, I can shower without covering anything.

I had my first shower in about 10 days today having to settle for my Mom's 'spit bathes' as she called them. The shower was poorly thought out here, it's in the corner of the bathroom, hand held but no barrier for the water. So they take the dirty sheets from your bed and make a moat so as not to flood the bathroom or room. There is a seat, they bring about a dozen towels, not big Turkish bath towels but there is strength in numbers and about 2 dozen hand clothes. First you wash with a soap and hand cloth then use a new cloth with 2 pumps of antibiotic wash each to keep the skin as clean as possible, more importantly with the catheter. Each arm, each leg, underarms, chest, stomach, back and other places so in the end there a steaming pile of wet blankets, towels and wash clothes. It felt heavenly, Charnell was pacing behind the door and kept asking if I was okay, I didn't want it to quit but finally gave it up. Bruce had my clean jammies out and I slathered on a heavy coat of Aveno, I decided there would be no more walks tonight. Tomorrow is another day. (The nurses are hoping in the new Cancer center that the bathrooms have a little better design.) I don't regret buying so many pj's they are so comfy to wear. It's awfully dry in these rooms so my lips are constantly chapped, niece Anne from Kansas City sent me a package of Burt's Bees lip balm, Vit 3 and Peppermint and it is the nuts. It is so cooling and peels the dry skin off but I have to keep at it. At night is the worst, I wake up and have cotton mouth.

Bruce will go home early tomorrow to tend to things and by the time he comes back, I'm hoping I will be going with him, can't wait to see my numbers in the morning and hope they keep dropping. Bruce is watching the Hawkeyes and they are doing well considering on the road where they don't do so well, so I think he will stay awake tonight. We watched another Back to the Future this afternoon and 2 days to Ground Hog Day. (If I'm on the way home I won't be disappointed.)

We found our selves in a fight with insurance/medicare that neither one understood but my social worker Jody was in today and told her everything. She was back less than 4 hours later with good news, everything is up to date so that was a relief. Why they put us through that, we have no idea it was the last thing we needed, especially when some guy was trying to say we had another payer, which we don't. So you can all see that it's good news all around.

Over and out for tonight.

Tuesday morning

The Methotrexate 4 hour chemo is in the books, since they started it at 9 last night, there was not much sleep, I was up peeing every 1/2 hour but I'm not complaining because so far everything is going well. I will stay on my bi-carb IV until the levels have lowered enough for me to return home. It was a 2.0 this morning, supposed to be down to .05 so the more I drink along with the IV, the faster they will drop. Bruce and I shared a good breakfast of biscuits of gravy and french toast and I've taken 3 laps in the hall so far. I have to really push and concentrate to walk straight, my goal, perhaps a little ambitious, but to do a mile, 10 more. The catheter is scheduled to come out at 5 tonight but they could change so it all depends on that. I'm tired when I get back to the room but soon ready to go again. 

Bruce came to bed with me in the night for awhile and that was nice, it's been awhile since we shared a bed. January has been such a blur, it's eye opening to feel good and know what is going on. No nightmares last night, maybe I've broken that cycle?

Looking forward to Groundhog Day marathon if I'm still here, I love that movie! They only have the one Hallmark and not a lot to choose from otherwise so I get lots of reading in.I do have a shower to look forward to but there is a lot of down time, perhaps a nap also?

This is such an easy way to keep in touch with everyone, we appreciate all your love and support.

Monday, January 30, 2017

Monday night and all is well......

I've made 4 laps around the hall here today, 13 is a mile, quite a difference from what I was doing yesterday. I have to concentrate, 'heel, toe' and try to maintain a stride, I mostly feel like my achilles tendens are tight so when I'm in bed I stretch and stretch. Since the stem cells are in the bank, I'm scheduled to get my chest catheter out tomorrow and what a relief that will be. They don't need it to reintroduce the stem cells and especially since there is no time line on it.

It's only 7 and Bruce is snoring in the chair, he just can't stay awake! I'm so encouraged and grateful for all the well wishes, perhaps this is the turning point? Whatever happens we are looking forward and not waiting for the other shoe to drop.

Will always be in touch.....

Home Sweet NMC room 7454

After humping 3 bags to the car early this morning, we loaded and had a lovely drive to Omaha. There was snow on the ground that made the travel of deer show up although we only saw one that was on his feet. I was very apprehensive about this trip, in case you hadn't noticed but was able to walk, although somewhat slowly from the garage, to the elevators, to the clinic and back to an office. 

 Dr. Lunning is wonderful, there are just no words, I'm getting a second dose of Methotrexate that I received last time plus a new pill chemo, Revilid each day for 2 weeks.But I won't have to stay the two weeks, YAY YAY!!!!! Only until the Methotrexate is out of my system 3-6 days. I tolerated it well but this is an experiment putting the two together. The Revilid will cross the blood brain barrier and go down my spinal column that showed lymphoma cells were hanging onto the 'hairs' along the spine. 

The Methotrexate will hopefully continue to clear up any rogue cells that are still lingering and keep them from going forth and pro-creating more of the little bastards. I shouldn't have much or any side effects. I will get physical therapy to improve my walking and I plan on doing a lot of walking.  

We are unpacked and waiting for dinner to come, you know you gotta eat! My mood is SO MUCH BETTER knowing I will be just a few days. Maybe the nightmares won't come. I brought the laptop computer and it latched right onto the WIFI so possibly my tablet just didn't have the OOMPH. But it is loaded with books so that comes in handy.

Rosanne, I found another walking book, Wild by Cheryl Strayed, she takes off on the Pacific Coast Trail going up through CA and north, even mentions Burney Falls. I'm not sure about the book yet but if you read it you will get an idea of what I packed to bring down here!

I'm ready to go home now!

Sunday, January 29, 2017

Will Monday ever come?

I'd been dreading going back to Omaha for 2 weeks but with the new chemo pill Dr. Lunning is going to try can only be given under their supervision. My legs have been getting steadily worse, not pain but such weakness that I shuffle around the house like an old, old person and that is exhausting. Home health care comes out and today I even got an hour of cleaning but it's so hard to have to have the help, I started to cry when Sandy came but she said it's easier if you just accept it. Yeah, right, that didn't really help.

Bruce had to go get groceries, I made him a detailed list and he only had to call 3 times to clarify what I wanted! He is being incredibly patient when I'm sometimes pretty bitchy and impatient.

I'm owing him big time!

Besides the home health aide, a nurse comes and a PT, she brought we some excercises to try to keep what strength I still have. I try to get out of bed at least everyhour and shuffle around and Friday I could tell I was better as did she. Kim called and wanted to come after work, we'd had Wonder roast chicken for dinner from Fareway so we made chicken quesidas out of leftovers, then commendered the big TV from Bruce and watched Hallmark. Jeff is working the whole weekend so she brought dinner on Saturday and we watched a good movie, a stupid movie, some BB with Bruce and finally moved into the kitchen and back to Hallmark. I told her she should just spend the night, the daybed was empty but she decided she better go back to her house. She also brought a cane that is a big benefit and freedom from the walker. It really helped pass the time, don't I have just the best friends??? (Becky was off to a trip to the grandkids in KS.)

I'm sitting in my bed looking out at the beautiful sunny day and wondering how this week will go. It would truly be an answer to prayers if I could handle this and be back home in a few days, prepare for the worst and pray for the best. With the calves gone Bruce will have more freedom to be down there and this week is supposed to be nice weather so that is enccouraging, I can hardly believe it is the end of January, the month has gone by in a blur, how I have deteriorated.

Another problem I have with Omaha is that I have nightmares down there, ever since I reacted to the ICE chemo that kept me up about 48 hours, it was like a groovy trip on LSD man! Maybe it won't bother me but it still won't be like home sweet home.

I'll try to keep up but you all know the problems I have with their WIFI getting out, I can always receive email on my phone if not the tablet. I have plenty of books loaded and I'm sure I will be busy with PT and a pain specialist. Bruce reads from niece Chris' book of devotions each morning and it keeps us grounded, knowing that we are not in this alone. It helps to be reminded we are not the only ones suffering in this world and this too shall pass, somehow, with the help of all the dedicated medical personal down there. They will keep fighting as long as we will. I know we are in the best place.

Over and out for now, love to you all.

Friday, January 27, 2017

You know what they say......

.....pick a big one, that way you have warmth in the winter and shade in the summer.

Larry went one better, it's cold out in the coop at night.

Thursday, January 26, 2017

Switching out cattle fountain in the dead of winter

I wrote this back in Dec but never posted it so thought i better get caught up.

In a perfect world a cattle fountain would never give you trouble in the winter but we all know how that goes. Two days before the temps were to drop to well below zero, Bruce discovered a frozen cattle fountain. When he tried to remove the pipe, it broke off to add insult to injury. He called both Grassy and I to come help as he dipped black muck out of the bottom of the pit. When I got over there, I found him, with all his winter garb, stuffed through this small door of the fountain, he could hardly move.

I just hoped he would be able to get back out, I thought we might have to chain him to the tractor. But, with the help of a bucket, Bruce managed to crawl back out. Marcus Lumber came out the next morning to fix the broken pipe and this time Bruce took the fountain off the pit to make it easier.

He was contemplating what to do about a fountain, looking a new ones when his good buddy, Freddy Boy, stopped over and said he had two Peterson cattle fountains that he no longer used. It was a cold day when we went to look at them so I stayed in the car and let the guys do their thing. Bruce decided on one and when it warmed up a bit, Fred and his brother, Larry, took it up and put it in Fred's shop to do a little work on it.

Last week the temps got up to the 40's so Bruce took advantage and replaced it.

Out with the old!

Fred's fountain is small than ours and it sat on this 'donut' to cover the well pit.

The first job was to put a ring of roofing tar on the donut to create a seal to keep out the cold wind. Ideally the donut should have been upside down but this wasn't an ideal situation and Bruce had to improvise. (He did come home with lots of tar on his hands but luckily Goo Gone cleaned him up.)

The next job was wiring an outlet under the fountain to plug the heaters into.

Somehow I missed a picture of moving the new fountain and we had quite a job wrestling it into place. Bruce would lift it just enough to take the weight off and I tried moving it around. Could that be why I had so many sore muscles the next few days? Remember, these fountains are made of concrete.

It was finally in place and Bruce spread more tar around the bottom, in a perfect world it would be 70 degrees to cure it but you have to work with what you have.

The fountain was mounted and it was time to hook up the hoses and plug in the heater and we found the flaw. The door in the waterer and the hole in the donut was small and the water pipe was low, not a good combination! Bruce tried getting inside but with his coveralls he just didn't fit. I told him I would try, if that didn't work, we would have to take the fountain off, AAUUGGHHHH!!!

I had to take my coat and glasses off, I had on my new, lighted, stocking cap that proved invaluable, and had to go in like a diver, with both arms extended. I had a death grip on the DeWalt drill, because Bruce kept saying, "Don't drop the drill in the pit!" with the little driver bit to screw the clamp on. It's a good thing I'm not claustrophobic! Right Kim?

Bruce passed me the black water hose to slip over the nipple, it went on easy at first but no matter how hard I tried, I couldn't get it all the way to the bottom. I contorted, pushed, twisted to no avail, I could still feel a little gap. Bruce said, "It should go on all the way," then he hooked up his end and found out how hard it was. He was standing on the ground and had lots of power I was dangling over the pit. He finally said to just clamp it and I managed to screw the hose clamp and not drop the drill in the pit!

By that time I was so wore out, I couldn't back out of the door, Bruce had to pull me backwards, he probably wondered if he was going to have to get the tractor.

It was getting dark but Bruce was on adrenalin rush, the fountain was so close to being done, He finished putting the float in the back of the fountain and we had to take the little door off once again, we had that thing off and on too many times to count. I removed my coat once again, dove inside and plugged the heater in and turned on the water. 

It worked, it really worked!!! He left the cows out of that yard overnight to hopefully let the tar set up, it hasn't, it's waiting for the 70's. When he did turn the cows in, they were very suspicious, "That's not the fountain that we had!"

Cows are funny that way but after a new days they gave in and started drinking, now Bruce finds them gathered around the fountain in the morning, kind of like the office workers around the water cooler.

The cows probably get as much done as some office workers.

Tuesday, January 24, 2017

Back from the near dead

I've been on an awful roller coaster the last week, after retrieving my stem cells I fell apart and and was so weak I went right from Omaha back to
Cherokee for a few days of R & R, throwing our household into a tailspin. I've never been so miserable and weak that I could remember. Couldn't sleep, no matter where I tried, could hardly talk, all I wanted to do was go home. Bruce and Delmer built a ramp yesterday and today I got a hospital bed set up in the living room, home health will come often and are helping me with PT.

Bruce had to drive to SC in a snow storm and back to get my new Chemo Pills and pick up the bed but as always, there are the idiots out driving like it's 60 and sunny. Jo Laursen came to baby sit while Bruce was gone and she told me I needed a hospital bed, we already planned to borrow a lift chair but now don't know if there is room in our living room so will see how it goes. I can't belive the hoops they make you just through, we just wanted to rent one but had to go thoughthe hospital and had to have Dr. Vandelune okay it and he wasn't in today. I was at my wits end when Becky found one in Marcus that we can keep as long as we like, the Lord moves in mysterious ways. I piled blankets on top of the already comfy mattress and I'm loving it. I may be like Rosanne and never give it up.

Since I'm had such a hard time with the chemo, they want us back to Omaha at 9 Monday morning for tests and a consultation with Dr. Lunning,  where they will admit and give it to me supervised. If we'd only known that we could have waited for it to be delivered  and Bruce would not have risked life and limb out on the roads but all's well that ends well. Don't know how long I will have to stay, it all depends on how I do. I don't know yet if all the stem cells have to be destroyed, I do not look forward to going through that again but maybe they will keep up on things this time.

Bruce is about at his end of his rope and now he gets to push snow all day tomorrow but he has been a rock. I just have to work to get stronger so I can come back and be his. I need to get out of bed every so often and work my lets but I did have an appetite tonight and had a couple pieced of pizza that went down good. At least he sold the calves so that is less work, and perhaps he can stay over night with me.

 This is short, but just so you know I'm still alive, but a fews days ago I would not have given me much of a chance. Now if I would jut find my little stylus to correct some of my mistakes, I'd be a happy camper. Mollie snuck in while Jo and Bruce were bringing in the bed and settle down by me, this is where she wanted to be. The ramp is a great addition to the house, and much safer. I always was nervous when older people had to navigtate the steps with no rail so all us older people will be much better off.  Love to all.

Wednesday, January 18, 2017

Trying to keep up but so exhausted, perhaps tomorrow I will go home?

Bruce wil haul calves in the morning to the sale barn so Rosanne will come get me if I get the okay. Right foot doesn't work well but I've been tethered to my bed for so long, I' not surprised. He is back tonight, we got out 2 hours snuggle in the middle of the night and that helps so much. Getting lots of encouragement from all our loved ones and people we don't know. I can't wait to get home and be able to be up and about whenever the mood strikes me which right now is't too often. Love to all, Julie

Tuesday, January 17, 2017

Some really rough roads right now,

When I can get on my fingers don't cooperate so just long days here and I won't be released in the next day or so. If the weather clears at home, Bruce will be down. Love you all.

Sunday, January 15, 2017

Sunday morning news

Chemo is over and the crummy feelings are back, try to eat try to drink, lots of pills to keep things on an even keel. I was so thankful that Bruce could be here to be my gopher and bathroom buddy, the aides are good but it's not the same. We had a Comforting snuggle for a few hours before he had to go home, no one seemed Surprised to find two to a bed when they came in to do vitals.

Dr G was in the MRI showed a spot at the base of my skull along with inflamed nerve endings on both hips which 
this chemo should take of that is why another PET scan tomorrow hoping for no other surprises. I tried to walk this morning but so much weaker it is discouraging.

Thanks for your encouraging words Dr G tells me not to worry they have lots of things in their arsenal.

Saturday, January 14, 2017

Sleepless night

I forget how steroids screw up your nights, Bruce is sawing logs on the couch and I just can't turn on the reading light. One of the things I thought about while laying in the MRI was the noise it makes, even with ear plugs and I wonder how long it will be before we see an annoying add on TV, "If you have ever had an MRI and experienced hearing loss, you too could be entitled to a substantial monetary compensation. Just call Dewey, Cheatem and Howe to see how much we can get for you. After taking out our exorbitant fees, you may be left with enough to buy an economy pair of hearing aids."

See where my mind goes when I can't sleep. The WiFi graciously let me connect my tablet at 10:00 pm tonight so thought I better get this down.

A big fat roadblock with aa the pile of rocks!

This was supposed to be it, my body grudging gave up the stemcells needed to proceed at much cost to my health. The aches,  pains, and nausea were brought under control but I developed an increasingly weakness in my right leg that made it hard to get around so finally succumbed to using a wheelchair at the hospital. Becky put in lots of legwork pushing me around but I still had to be her GPS to stay oncourse.

We were so close, in the room with Stacy and Dr Lunning running through the final consent forms when he noticed the weakness that was not there before. Red flags were thrown, hurried consultations were held with his team and was determined I wasn't leaving the hospital if I had to grab his ankles and be drug down the hall.

They decided to admit me and I had a full afternoon of tests, MRI of lower back, a neurological exam of right leg and foot, a spinal tap that was nearly painless, I only sucked in my breath once and an excruciating painful test where she shocked the crap out of my right leg then seemed disappointed I chose not to do the left which doesn't bother me. I have a whole new respect for the cattle prod that we have to resort to at times.

Bruce was staying the night so was here when Mark, the PA came in with the bad news that the lymphoma was already gaining a foothold. There were cells in the spinal fluid, that is what is attacking the nerves in my legs causing the weakness and the MRI showed a mass on my kidney or liver, I Don't remember for sure.

You would think by now we would not be surprised but the emotions run the same path, stunned, tears and where do we go from here? It was a restless night and we found out 2 adults can sleep in a hospital bed, Bruce slipped out in the early morning to go home for chores and be back to stay tonight.

This morning I got a marathon MRI, total spine and head that lasted 1 1/2 hours, I spent most of it trying to stay calm and having a lot of talks to God. They weren't "Why me?" not when I see a little girl on this floor buzzing around on her tricycle and the little blond boy pulled through the hall on the way to the MRI in a wagon hooked up to port with an IV pole, sucking a pacifier and waving to everyone. 

The ride down this morning was an adventure, my driver was an aspiring race car driver who took blind corners on the inside at high speed nearly taking out a laundry cart and a tray of IV bags, I should have insisted on a seatbelt.

The same Dr that I had at Thkg is here this weekend also and was in to say he is in touch with Dr Lunning and they have a new plan. I'm getting a big bag of another chemo today, it goes to the brain and down my spinal cord blasting away at the little bastards trying to make a coup. I will be here for a few days and then back home, another PET scan on Monday, I'm really detesting them. Getting lots of meds to counter bad effects and, bless her heart, Rosanne sent chicken and noodles with Bruce. We will know how well it is working if the numbness gets better.

The WiFi still sucks and can't get on with my tablet so typed this entire post on my phone -Aaauughh! I've been so afraid I'm going to hit a button and wipe it all out! If that happens I might have to hurl it against the wall or at least threaten to.

I so appreciate the emails of encouragement even though I don't answer many. This blog is my link to all of you and its good for me.

Love to all.1

Thursday, January 12, 2017

They have wrung everything out of me that they can,,,,,,

.....so tomorrow is admittance day. They want you to have between 1.5 and 2 count and mine was finally up to 1.87. I've never had to pee so bad and able to make it to the bathroom intact, that is extreme relief,

We have an assortment of foods back here so I fixed tea and toast and fell into bed, sleeping until nearly 6:30 to find Becky gone to the 'get together' at the motel office. She brought me back some potato cheese soup and garlic bread, nothing much hits the spot but this was close. I've learned not to bring my stomach into a lengthy conversation about what it wants to eat, I usally just shove something down and let my stomach deal with it, sometimes it doesn't like my choice of food. But I'm hoping with no more shots I can begin to heal that part.

Stacy called to tell me it was good to go, labs at 9:15 tomorrow and the Dr. Lunning at 10 for a final physical and then assign me a bed. I called Bruce to see how fast he can get down here. He will help us pack up and get settled and then he can stay a couple of nights. I'm ready to see him. The rumor is he is bringing a stash of chicken and noodles from my sister, Rosanne. Nothing stimulates my appetite like her homemade noodles.

Becky will hit the road home, back to the real world of cattle and pigs, I don't know what I would have done without her. I can get mail at the hospital as soon as I know what room.

Signing off from the Sonesta ES Suites motel, it comes highly recommended if you ever need a place to stay.

Wednesday, January 11, 2017

Day 7 still not up to par.

My battered body isn't producing enough white cells to get me over the hump so it's back to the hospital at 7 for the super shot, tomorrow morning shots and another 4 1/2 hours of collection. Baring any other setbacks, I will be admitted on Friday and then Becky will be released from her babysitting duties and go home. Bruce is planning on coming and stay the night and I'm ready to see him, it seems like an eternity.

By the looks of the weather for the first of the week, there won't be many visits. I'm getting relief from the pain so sleeping is going a lot better but it's still hard to sit much. They gave me a bed this morning and it helped but was still a long time to be in one place. I have to hold back on fluids and today was the day I thought I'd have to call for a commode, but luckily was able to take care of my muscles long enough to get to the bathroom.

Becky is able to take advantage of the meals at night, I did try a Wendy's Jr Burger and fries and it went down well. So I keep trying but my fall back food is tea and toast. We are off to the hospital once again, at least we have the route down pat.

Tuesday, January 10, 2017

Day 6

It's hard to keep track of the days, I had to go back and recount but tomorrow is Wed and we did come on Thursday so I guess that's right. All I can say at this point is, it's a struggle. I had my first day of collection but it wasn't enough, I will definately have to do it tomorrow and possibly Thursday, even though my white count is extremely high, it wasn't good enough. So it was back to the hospital tonight for another super shot, tomorrow morning for the 2 regular shots and collect for another 4 1/2 hours.

I have so much bone and muscle pain because the shots stimulate my body to produce way more white blood cells than it ever would so it's hard on my hips to sit for long periods and I was in a chair the whole time. By the last hour I was ready to call it quits but I couldn't. Tomorrow they said I could try the bed, at least I could roll from side to side and maybe alleviate some of the pain of being in one spot. 

Everyone in the apherisis room is so nice and conscientious but I finally kept my eyes closed or they would be there, johnny on the spot, asking if I needed anything. I shouldn't say this but it got annoying, but you won't tell anyone will you? Becky chronicled the event with pictures on her cell phone but I can't figure out how to upload them to the blog. And she, who says she faints at the sight of blood, even took pictures of the bag.

Stacy was down twice to see how things were going and Dr. Lunning ordered some more drugs, hoping to help me sleep, it doesn't help that I feel exhausted most of the time. I had the same nurse both nights for shots, Rosanne, I should have asked if it was her birthday like my sister, Rosanne. I asked her how I would survive going from this run down and then into 6 days of chemo and she said that patients tell her the apherisis collection is the worst because they are pushing, pushing. I hope she is right.

My sister, Sara, asked about the cleanliness issue when they had told me if I felt good I could go out and about. Mostly that lies with me, wash, wash, wash your hands, wear gloves whenever possible and if I rub my eye or mouth, ditch them and put on a clean pair. Chose wisely where you go out to eat, stay away from salad bars because you don't know how long the food has been there. If you go in a restaurant bathroom and it's out of soap, leave, that means there was no soap for the employees who are required to wash they hands before returning to work. Don't eat deli sandwiches, for the reason above but they encourage you to go out to eat just for a change of pace.

The most obvious is not to be around sick people and I know that everyone understands that. The nurse giving the basic care class asked if we had pets and I said yes, she said I could keep them but Bruce will be on litter box duty for the next 6 months or so.

She said I could keep any children also, that was very comforting but scary, not knowing where I would get any.

Here's to relief from drugs and a good nights sleep.

Monday, January 9, 2017

Day 5

We just got back from our third trip to the hospital today to get my super shot, the second trip this afternoon was for Basic Care Class. It outlined all the problems I could run into and how careful I have to be about cleanliness. I can't have any flowers, plants or even artificial plants but I can take Teddy and the little flower Becky's grandaughter, Risa, made me. I think they tell you to prepare for the worst and hope for the best.

I'm not feeling very well at all, partly because I am hungry but find food repugnant so I'm forcing myself to eat some applesauce and jello that Becky made. She had a productive day at Boy's Town, I managed to lock myself out of our apartment and had to struggle to the office to get a new key card. Stupid! The nurse tonight told me to stop and get some Benedryl to help with the nausea and sleeping and, of course, I have two boxes at home. I didn't know everything I should have brought. Big Sigh, hoping tonight is a little more restful. Signing off for now, tomorrow will be a big day. Love to all.

Day 4 1/2

It was disappointing to find my counts were too low to collect this morning so I have to go in tonight at 6 and get a super shot and they will collect tomorrow for sure. Becky is off to Boy's Town to try and get some information and I'm going for a walk outside, I'm supposed to walk as much as I can and it's not that cold and no ice. We stopped at the office and extended our stay for another 2 days and I have a book borrowed from online library that expires in 2 days so I better get cracking.

Edited to add, we think our upstairs neighbor got a Hippotamus for Christmas by all the thumping and bumping around.

Sunday, January 8, 2017

Day 4

The meds have kicked in and I make sure I take them regularly. It's hard to walk, I still weeble,wobble. We went for my shots and the nurse told me it's important to stay active so I do laps around our little apartment several times a day. I also fought off the Sandman so I can sleep tonight, last night was very restless. 

Our room has a kitchen with a dishwasher, we don't use many dishes but every day when we get back, they have been here and straightened up and every day they have run the dishwasher for our few dishes! I didn't think they would do that, I planned on doing the dishes in the sink but if they insist....

Tomorrow morning we go early 6:30 for a blood test to see if I have adequate stem cells for retrieval so keep your fingers and toes crossed. If there aren't enough, I will get shots again and come back here. I have warm clothes laid out because my blood goes into the machine at body temperature but is pumped back in at room temperature that chills your body. Stacy said she has seen people bundled up in sweatshirts with the hoods up so I'm taking my new fuzzy Viking sweatshirt that Bruce got me for Christmas. They have warm blankets also, anything to keep you warm. The process takes about 4 hours and, after months of pushing fluids, I was told not to drink much water because I can't get up to go to the bathroom, I'm tied to the machine. If I really have to go, they pull the curtain and bring in a commode, since I have bashful kidneys, I want to avoid that. 

Becky is a very good roommate, she does her crossword puzzles and reads, no complaining about all the down time. If I get to go the apherisis room, she is going out to Boy's Town to try and look up some family history. It's hard to believe that tomorrow night at this time, I may be in the hospital ready to start the final steps. When I look around the room at all our stuff spread out, we may need a pack mule, or at least one of those carts that hotels have to move luggage.

Thank you all for your prayers and support, I know they are helping.

Saturday, January 7, 2017

Day 3

Has it only been three days? I'm so thankful to have Becky here, there is no way I could do this alone even with a shuttle to the hospital. I'm getting a double dose of the growth factor and that is what caused the severe leg pains. Thursday night I hardly slept, I was up walking every hour, gimping I should say, it was miserable. I was nauseated after the surgery so they gave me some Zofran to help. We had to go back upstairs for the 2nd set of shots and I told the nurse how painful my legs and back are and she immediately said that happenes to a lot of people, she would get me a pain pill for now and a prescription to take home. She did say it might be a good thing, that I'm really producing stem cells. I thought it would be a big deal, not there, they know how to take care of you.

But I was more nauseated after taking the pain pills because I couldn't eat much so I was puking most of the night. I was really a basket case by the time we got to the hospital and again there was the immediate, "Oh, we can help you out with that!" I got a bag of fluids along with pain and nausea IV's along with it and felt better by the time we left. Becky had to leave the room when I got sick in there again but it didn't bother the nurse a bit, I could never do that.

We came home and Becky went shopping for food I can eat and I went to bed - and slept - and slept - and slept - at one point Becky said she came over to see if I was still breathing but she didn't hold a mirror under my nose. I've eaten a cup of applesauce and a cup of tea with 2 slices of toast, not much but the best I can do. The challenge will be when I take my pain pills but the Zofran is disolvable under my tongue so the nurse told me to take it first.

She also changed the dressing on my catheter and it hurt like a son of a gun when she cleaned up around the incision but it won't have to be changed for another week so 
she said it will have healed. It's pretty painful but the pain pills should help that.

We are hoping day 4 will be better, then Monday will be the first stem cell retrieval and that will set the tone for the rest of the week. I know you are all wishing me luck.

Friday, January 6, 2017

Day 2

Did anyone get the license of that truck that ran me down? Hoping for a better day tomorrow, see you then.

Thursday, January 5, 2017

Day 1

Becky and I had an uneventful trip to Omaha and arrived in plenty of time to find a parking spot in the underground park under the Leid Transplant Center. It doesn't hold a lot of cars and, even though we think this will be the time we don't get a spot, our luck held and we got the last one. We took that as a good sign.

We made our way to the third floor, got my shots and were headed for the motel in good time. Dodge St. has some construction which narrows it to two lanes but only for a few blocks and we found our Sonesta ES Suites. It is a compound of 2 story suites, 8 to a building and the girl at the desk asked if I had a problem with stairs, perhaps because she saw me hobbling in.

I don't know what I did but both legs have very painful calves, I can feel the knots and I move like a very old person. I even 'weeble/wobble', that is what I call it when people bob from side to side when they walk. I told her that stairs were a struggle and she said, "No problem", she would get us on a ground floor.

We were blown away when we walked in the door! It has a full kitchen with a full size refrigerator, an eating bar with 2 stools, microwave oven and everything you would need to cook a meal - as if we will! A sitting area with TV on a large chest of drawers and a king size bed. We won't have to worry about encroching on each others private space tonight. (Kim called this evening and we told her to come down, we could sleep 3 to a bed like a pan of buritos in the oven!)

There is a large bathroom with the tub and stool in another room than the sink. Lots of closet and cupboard space, I see now whey they call them suites, it would be a great place for a long term stay.

We went out to get a pizza and then asked if there was grocery store in the Crossroads Mall right by us. No but there is a Walmart right up 72nd St., I don't know where Becky's mind was but the next thing I know she was turning into Dr. John's parking lot, an adult entertainment store. I wouldn't let her go inside, who knows what she would come back with. We finally made it to Walmart and she dropped me off at the door, I wanted a gallon of milk and the dairy was at the far end of the store, groan!

We got back to the room and I decided to try to relieve my tight legs with a hot bath, it helped but as soon as I tried to walk, it was miserable. The motel was even feeding us tonight, they do it on Tuesday - Thursday evenings, what a deal, so we went to Target right down the street and I bought some pain patches, Bio-Freeze and a heating pad. Becky asked me what I might have done and I remembered loosing my balance by the pond the other day and falling on the rocks, maybe that is when it happened?

I'm in my jammies, doctored my legs and on the heating pad, watching the Baking Show where they are making Peti-fours, crullers and Mille-Feuille. Since we are full of chicken strips, french bread, coleslaw and ice cream, our mouths are not watering. I have a feeling I won't last long tonight since I had so little sleep last night, just hope everything works and I can walk tomorrow. I get my central venus catheter implanted tomorrow and another round of shots, I may not be feeling too good tomorrow night so guess I better enjoy tonight.

The road to the transplant begins today

After a sleepless night, I'm up, showered, dressed, packed and waiting to go, Becky is my chauffeur and responsible adult. The next week we will be staying in a motel and I will go in as an outpatient until enough stem cells are retrieved. If all goes well, I will then go right into the hospital for the second stage, heavy duty chemo for 6 days that will kill off anything nefarious still lurking around causing trouble. That means I will be gone a month, YIKES!

I made a cheat sheet for Bruce outlining such things as where to find the spare toilet paper, that is very important but he informed me that he already knew that.
How to run the dishwasher as he never has.
How to handle the ice on the backyard pond by switching out heaters.
Don't forget about Bonnie in the garden shed.
Buy the Lady Porky more soft food.
Where to find his favorite foods.
I put clean sheets on the bed and a clean towel up yesterday, it was up to him how long he wanted to go without switching!
You know, just helpful hints. 

Packing was a daunting task, what to take? Thank heavens Bruce bought a big duffel bag at the Spencer Fair with a multitude of pockets, I filled every one of them. Besides that I have three other bags and my big purse, I'll need a pack mule to carry them to my room.

"Oh, Becky...."

Tuesday Bruce and I were in Omaha for most of the day, repeating some tests, signing papers and ending with a visit from Dr. Lunning and Stacy where I signed more papers. It's really going to happen as long as I stay healthy. We have been overwhelmed with the support and prayers of people all over the country. I can't tell you how many people say their church prays for us each week. It's scary, but I know this is what I have to do to get a shot at a normal life.

I will miss this little snot......

.....as standoffish as she is when I've been gone a few days, she may not know me in a month.

I will send updates but no pictures unless I can figure out how to get them on the blog from my phone, I didn't need another bag with the camera and laptop.

Love to you all.

Monday, January 2, 2017

Ringing in the New Year with Family and Friends

With some family members getting ready to flee the frozen tundra, we wanted to get together before they left so last Friday make plans to meet in Mapleton at the Beef and Brew. It had been years since I was there but if you are ever in the vicinity, stop in and sample some of their fine foods. It was an interesting trip down for us in the twisting and winding roads but it wasn't boring. 

Most of the group had hot beef sandwiches, Bruce and I succumbed to their pan friend chicken and Sue had chicken strips. Bruce regretted his choice as the waitress brought huge hot beefs to the table topped with potatoes and smothered in gravy - for $5.00! I know what he will choose when we go back.

We had such a nice time, all too soon some had to leave and I wanted to get a picture. If you've ever tried to get a group picture you know it's like herding cats but eventually everyone complied with the directions.


From left to right, Carri, Max, Mary Ellen, Frank, Nancy and me. In the back row, Sara, Tom, Sue, Peter, Bruce and Rosanne. This year Sara and Max are traveling to Florida with 2 cats and a dog in their motorhome, it should be an interesting trip!

New Years Day we were invited to Whiting to have a sumptuous feast with our friends the Waugh's and what a feast it was.  

Prime Rib was the staring role with lesser parts played by the twice baked potatoes, fresh green beans, a big salad and homemade rolls made by daughter, Heather and topped with Sam's homemade peach and strawberry jam.

"Would you like a little AuJus with your prime rib?"
Bruce, Larry and Aaron, Heather's husband, retired to the living room to watch more football and catch up on the farming and Larry's trucking stories.

Sam, Heather and I stayed in the dining nook, after clearing the table to watch the numerous birds at the feeders and attempted to solve some of the world's problems.

It was dark before Bruce was able to tear himself away so we drove home very carefully, coming upon a herd of deer north of Smithland but that was the only wildlife siting. Sam sent home a generous box of canned peaches and pears from her trees along with 2 kinds of jam and a bag of Heather's rolls.

We vow not to wait so long between visits they cook really good food down there!

For an added treat, go to You Tube and look at the Christmas video that Heather and Sam made, it is wonderful! I have a link that Heather sent to my phone but it didn't work so just type in the search box, 'Heather Bircher Night Before Christmas on a Small Family Farm.' 

FYI - she has other video's of houses that are for sale, maybe you will find one that trips your trigger.