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
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
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.
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
.....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
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
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.