Methotrexate counts going down s-l-o-w-l-y

I envisioned them plummeting but guess that was a little much to ask for, the Dr. was in and said 2 -3 days. I've walked 5 laps this morning and little shaky because I didn't sleep good last night, just couldn't get to sleep. I think one problem is that I'm using my tablet at night so not to keep Bruce awake with the reading light and that is a problem. The experts say that the computer lights tend to keep your mind open and going. I finally asked for an Ativan  in the early morning and I still think I'm trying to shake off the results. But I'm determined, I'm also choosing my food more carefully, blander protein, spicy doesn't cut it.

Tonight I will be alone so will switch back to a book, get my Ativan early and hope for the best. I heard from Elizabeth that her Dad gained a lot of strength on drinking the protein drinks so I'm going to mix vanilla and chocolate and see if that cuts down on the heaviness, I need more strength although I can do 2 laps at a time if I really try.

It's been Grand Central Station in here this morning, now I think I'll order some dinner and see how it goes. Bruce was off about 4:30 am to take care of things at home so it might be a long day but I must be patient. He read the devotions before he left and again, it sure fit out situation, it's as though the book was written for us. Maybe everyone thinks that. We will continue with Home Health when I get home but hope I'm able to move around the house as good as I can here. Kind of shaky, better drink my OJ I squirreled away from breakfast and maybe that will help. They are giving me extra potassium also, in fact I have 3 bags hanging this morning, they are taking care of me.

We look over the helo-pad, the copter left before dark last night and it returned long after, it lands between 2 tall buildings, that pilot has to have nerves of steel. There was a shooting between a peeping tom and a police woman and they were both brought here 2 days ago. Yesterday there was a police car down below all day, I wondered if they were guarding the prisoner kind of like on the police shows where they sit outside the room. One nurse said when it's a gang related, they guard all the entrances and everyone coming and going is escorted, how nice that much be! Bring a gang shooting into the hospital!

Just a few more tidbits from NMC. 

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 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!

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.

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.