Sunday, November 30, 2008

Come meet my ragdoll

You have seen me using "Ragdoll Billie" and might have wondered why in the world I have chosen that particular nick to use. It comes with the Myasthenia Gravis as a descriptive example.

Without proper treatment that is how we can be, and there have been a few times that I have been that limber, you know, flopping arms/legs, loose neck/head, especially on
the day at the dentist. "Oh, Mom, no legs have I!" At that very moment in time I fully understood the *ragdoll* example. In fact, right now I am having trouble typing because my arms/hands are so weak and trembling when trying to use them. Those muscles hurt then afterwards. That is the MG. It does not cause pain per se, but from overextended muscle use. It is just SO hard to obey the STOP sign. I have gone and come back to this point, with a light snooze in there, and my arms/hands do feel better, but the strength will not last long. My legs are similarly affected, but I am not up on them very often. :(

Ya know what that means, don't ya? Means more rest, especially with an appointment with Cauli in Jonesboro Thursday, and then - are you ready for this? Another lithotripsy Friday in Memphis at Baptist Hospital! We just spread the joy and $$ all around.

She enjoys company so I will leave her here with you to play while I go ahead to tend to other things. Come back to visit another time, won't you?

Now I just need to find some music for her (and me, too). I did a little special *dressing* to her to make her my own, and I just love her to pieces.

She is liable to show up any ol' place, at any ol' time, so keep your eye out for her!

Oh! She looks much better in full size as all of the photos do, so, as always, click on her so you can see her true beauty.

Um, I have also found a friend for her, too, so look for the friend one day, too.

Well, ladies and gentlemen, here she is after looking high and low, *My* Ragdoll!

Saturday, November 29, 2008

In the interim

This rest has been good for me. I definitely am doing better with the headache all but gone, except for a little here and there, and none working into the severe status. While *down* resting, sleeping, or just whatever, I have worked on the great-grandchildren's photos doing decorative work with them. I will start with the granddaughters next, but I still am not going to push myself. Rest is the first thing a myasthenic does for him/herself. It is amazing how restorative it is if your problem is MG based. Cannot say this is a 100% situation, but it is the first thing I should do for *MY* Myasthenia, and the hardest for me to accept! My eyesight is also very bad, with no clear vision at all, and I have had to increase the Mestinon. Means more rest, and being careful not to overdo it. With Christmas, I will be adding bits and pieces to my posts. I love Christmas. You will see that Kaitlyn has already begun decorating for Christmas in her picture as you view them. It thrills me that my digital abilities are returning.

For this cause, I am going to still take it slow and easy for the next few days now. We had just had so many doctors' appointments, the IVIG and other things, and with one on top of the other, Humpty Dumpty just came toppling down when the IVIG hit, I believe. All of this is still handling the IVIG much better than I used to do when I would have to sleep for two to three days after I came home. Interacting on the web is also very stressful for me, too, and I have to watch that, and remind myself I am not what I used to be, nor can I do what I used to do back when ................. oh, my goodness it's been back seven or eight years ago in Ring World days for me.

I guess you can call this *check-in* time for me. There has been a bit of excitement for me as I have found several CDs of PSP tubes from back around 2000-2001. So far upwards of 4,000, and it has been so much fun getting to use them again. Stay tuned, as I believe I will be able to post at least a little bit now, but do not feel it is time, yet, to place too many expectations upon myself.

Here are my four great-grandchildren, each in a photo that I have *played* with beginning with the oldest Matthew. I hope you enjoy. I had fun just playing around with them. Matthew, Kaitlyn, and Alexander are all from cell phone pictures. Please, be sure and click on the pictures here and view these in full view to be able to see all the entracacies I have done. Yes, I have used PSP frames, but have taken them on a bit further to make them *my own*. Before MG knocked on my door and pushed me down, I was making my own frames, so I still have a ways to go yet before returning to *beore* land. Enjoy.

Tuesday, November 25, 2008


UPDATE: I was able to finally get some sleep last night, but the headache came aboard very shortly thereafter. Until the pain has slackened I am not going to be posting unless it is photos, and thinking of doing that sounds good and maybe even refreshing right now. That way, I can sleep as long as I need to ward off these ole scalawags, the most horrible things I have encountered!! It is somewhat relaxing to fiddle with my computer graphics, so I may find myself doodling with that, or just plain reading.


Here is a video I *played* with, doing different things. I took the pictures holding the camera above Ashton with my right hand, with him lying in the crook of my left arm. As you can tell, no focusing. At first I had a story line to go with the pictures, but that made it even MUCH longer than it already is, and I still may go in and shorten it now that I know some things to do. FUN!!! Too long? Just stop it. ;-) Shocked me whenever I got the music and the pictures to end at the same time.

Till later . . .

Monday, November 24, 2008

IVIG in six hours now

In July when I transferred from inpatient to outpatient status, I was infusing 1000 at 12.5 ml/hr which took forever and a day, literally just as it sounds . . . forever, and then a day! Being inpatient, to whom did it matter, I guess. Anyway. I then found myself in a situation of needing to get that IVIG pooled blood infused by 8:00 p.m. each evening! THAT is MUCH faster than 12/5 ml/hr! MUCH, MUCH faster. It was either I push it faster or I had to stop the treatment. Don't tell me Dr. Cauli didn't know what he was doing. There are also some people you do not give an either/or situation. You either do it, or . . . ! I did it! Now, this was all in one day's time. The pharmacy did not know I was coming so no pre-planning, or expecting me, or anything like that. The IVIG had to be prepared AFTER I checked in each morning in a formula something akin to ?grams/kg body weight, the doctor filling in the "?", and the scales, ahem, filling in the "kg" for the body weight. You should SEE the size of the scales used to weigh me!!! It is a scale used to also weigh a patient while still sitting in their wheel chair if they are unable to stand, so you can imagine - oops! maybe you can't, so I'll take a picture next month . . . you remind me, okay? - anyway, for now, you try to imagine the size of this scale that is large enough to hold a wheel chair. You will, won't ya?

"?" grams/kg body weight

I am so sorry. I got this far but the headache has just become unbearable. I am just shaking and sobbing with shooting, stabbing pain. All was fine, and all it took to fire it off was getting up to use the potty chair here beside my bed. WHAMO! Scalawag! Deadly, ole mean scalawag!!!!! Yep. Exclamation marks for sure. Not over emphasizing one lousy bit. I had already cancelled tomorrow's appointment with Cauli because I was feeling so bad. It was only for a follow-up. ONLY? That's it. I can't stand it any longer. So, till later tonight or tomorrow morning or whenever, this is it for now.

Till later...........

Saturday, November 15, 2008

Perioperative Nurse of the Year

I received a text from my son yesterday afternoon. He was forwarding a text he had received from my favorite daughter-in-law. It read: "All my coworkers voted me the perioperative nurse of the year. I got I50.00 gift card and a framed plaque!!"

Now, haven't I been telling you I have the best daughter-in-law in the world? She says it is because she is the ONLY one I have and I keep telling her that is not true. She could be the only one, and still not be the best. Read on. You will see.
This picture was made back in February'08, when we met as a family to discuss how we were going to handle things when Jim had his prostate surgery, what with me being confined to bed and needing continual care. We had never drawn a congregation like this before, and I will tell you that Jim and I were more than a little bit nervous. We were already nervous over his cancer, and the upcoming surgery. We had always done things, just the two of us (no choice), and there had already been intimations of them (the kids) having some ideas of "doing this," "doing that," and I'll tell you it did not feel good to us. And who was right there in the middle of things, speaking her opinion? Yeah ::nodding head:: you got it. Not butting in, but blending in as a family member, loving and being loved, ready to do her part in this family drama...... taking care of Pops (that was hard to write, Donnie, because I've never been able to migrate to that name - it belongs to you and Jim)

Each morning everyone in the family, friends and co-workers receive a Good Morning text message from Donnie. We can usually tell whether she is working that day or not depending on what time that text come through. Believe me, they do not come real early on the days she is not working. She is catching up on that much needed sleep.

Donnie worked in manufacturing plants and steel mills from age 16 until she and Jim moved to Mississippi in 1998. They had only been in Senatobia a few weeks when she decided to go to college instead of finding a job. After three years of full time schooling, she graduated with honors from Northwest Community College, Senatobia, MS, in 2002 at the age of 37, whereupon she went to work at St. Francis Hospital, Memphis, Tennessee. There is no doubt about it, Donnie loves nursing, and Jim says he believes she was born to be a nurse. Her heart and character gives her a natural instinct to take care of others.

There seemed to be something missing, or maybe not quite befitting of Donnie with the use of the word "instinct" so I looked it up to find all the definitions, and here is what I found.
an inborn pattern of activity or tendency
a natural or innate impulse, inclination, or tendency
a natural aptitude or gift
Of those, I think of Donnie as having a natural gift. There is something Special, something Spiritual about that portrayal, because when God made her, he made her something special right from the very start.

Donnie, I could not find very many pictures of you with which to create this video, my very FIRST video, because you are always the one behind the camera catching memories of your family. Ummmm, sounds like someone else of whom I am vaguely familiar.

As you have stated that you are glad to be a part of this family, let me say that WE are glad to share our lives YOU. Please accept this video as a token, a tribute of that union which is just a branch of that one you and Jim share together.

We love you, Donnie, and are more proud of you than words can tell.

Saturday - a day of action as I clean house!

Today is a day to clean house around here, plus getting ready to go Jonesboro for a week of infusion. Oh, how I hope I can stay awake, but if I cannot, you will be seeing myasthenia in all of its glory...... blah!!!! I do NOT feel bad at all. Maybe a nice very, very cold coke will perk me up, plus reading some twitters will do the job! Let's GO!

Thursday, November 13, 2008

Taking a look at Dr. Moacir Schnapp -my pain specialist

My apologies. I have had a myasthenia sleep session. Very necessary, and very helpful. If *I* do not take care and get the needed rest, my body will take over and do it for me, which is what happened today (Friday). Sleep, eat, work until I'm out again, over and over. NOT the way I like it, but just the way myasthenia is, and if you have been with me throughout the months, then you know this is just the way it is, and I'm probably good for the get go for a pretty good while now. I am leaving the date the same as when I began this. If I need to, I will explain the days for explanation. This is supposed to be for myasthenia, and this is myasthenia alive within my body, so I feel it is relevant to show how it works. I've truly been a ragdoll today (Friday). Wish they had used "weak as a kitten" back whenever it was that they came up with the nick (long before my time, that's for sure). I'd much rather be a kitten, than a ragdoll, though, but I'm just prejudiced towards kittens. I did see a ragdoll at Cracker Barrel yesterday. Jim bought me several sweaters and warm tops there. I'd like to stop and shop once more like when we get to Jonesboro Sunday. I'll have to check my bank balance before leaving Sunday. Jonesboro has a Cracker Barrel, Blytheville, NOT! That's a Bah Humbug! Having the clothes makes me want to get out of this bed and house!!!!! Especially this house!

I had some good articles prepared, but during one of those sleeping periods, I just lost it all. Couldn't remember what it was, so I have to do with this.

On the road to Dr. Schnapp's office:
That is me at the top of the map,
traveling on down I-55, first to West Memphis, AR

then crossing the Mighty Missisip
(I grew up on it's banks at Helena, AR,
and crossed it's ferries there)

Today (Thursday) we went to Memphis for my appointment with Dr. Schnapp, my pain specialist of many years, beginning back when I had my first ruptured disk, L5-S1. I have dealt with chronic pain on the left side, from my hip (lower back) to foot since 1991 or 1992, getting nerve blocks periodically as needed when the pain became unbearable. Oral Darvocet n 100 was my acute pain medication I used leading up to each block.

I do not recall a block not being a success. In addition to treating my physical problems, he was also kind and compassionate. That is something hard for chronic patients to receive. Once "something for pain" is mentioned, doctors tend to freeze right there on the spot, don the cloak of almighty judge, and usher you quickly on your way with no treatment for whatever is or might be causing the pain, nor trying to help to relieve the pain which feels like it is dragging you down the miry path of destruction, physical, emotional, and all else. All of it together works to destroy all life that surrounds you. Where will it, where will you end? I had one doctor in Blytheville who actually handed my records back to me, and did not charge me for my so-called visit. He judged me without laying the first finger of examination upon me. Just his summation that I was a junkie looking for drugs, though I had been referred to him by one of his peers. What to do? Unknowingly, I had Myasthenia, Neuropathy, and some other things wrong at the time. Writhing in pain, a young child pulling on my coattail.

Okay, so that is the beginning from yesterday that has ended up today, and I fell asleep and had a GOOD night's sleep.

Schnapp, my buddy, glanced over the latest updates in my chart, and let out a big sigh, "Billie, Billie, Billie. Thousands of dollars in drugs, and shaking his head as he said it. I think he says this at every visit. We immediately went over what could be helped vs what could not. Such as, and here is the picture: the pain and weakness. I have three contributing factors: neuropathy, myasthenia, and the ruptured disc. He said, "I cannot fix the neuropathy, I cannot fix the myasthenia. The ruptured disc is the only thing left I can fix, and that can only be fixed with surgery, and that is not a guarantee." So. My long trusted doctor/friend whom I trust, had just repeated exactly what the other doctors had said. He even drew me a picture of it all. Had I not known better, I'd have thought they were all reading from the same book.

On my pain management, Jim made it clear to him that I wanted him to know I was using the lollies for more than just the headaches, because my legs, back, and neck hurt so excruciatingly bad, especially during the night. One night earlier in the week, it felt like my legs were being soaked in ice water, and nothing I did could or would help them, and no matter how hard I tried, I could not wake up. Kind of reminds me of that day in St. Francis when I had that thrombotic event, and was unconscious for a while. Ohhhh, rather scary thought, especially right now when it is nice and comfy in here, and though I have socks on my feet, they and my legs are quite icy cold. I can tell the pain med is covering a pain all the way up my legs. Callie is lying down there now between them giving me a little extra warmth.
(That is Schnapp on the left)
Jim gave him the marinol prescriptions that we had not used, nor planned to use, plus the Loratab that Gubin had given me after the Lithotripsies. We try to keep him well informed about the drugs. I try to act responsibly in their use, and sometimes I feel I do not use them as often as I should, under the doctor's mantra of keeping their patient comfortable and free of pain. It can be difficult to decide just when is the best time to take them, and I am prone to wait too long. But with the ruptured disk now, I am listening to my body whenever it hurts, and not making it go through hours of excruciating pain with hours of tears. I'm treating the pain. If I run out of medicine using it responsibly, then I will contact Schnapp because I have built my reputation of being responsible with them. I do not like taking the drugs, but if my body is in a state of needing relief, then I am going to do whatever is necessary. I sound like I am defending my use of my meds, but I am not. Rather I am showing how I have established myself as responsible with them. I don't think I will ever feel comfortable taking these, no matter what, and it is *me* I am trying to convince I am doing it right every single time I put one in my mouth, stick a patch to my body, cut open a lollie. I know I am looking for reassurance that I am doing it right. Yesterday he gave me that reassurance once again. It was just quarterly visit time for him and for him. All was done. Over. Something he and I have to do. Thank you Federal Government.

We got to his office early, with time to spare, and were seen very quickly. Then we were retracing our tracks back north in no time at all, stopping at Cracker Barrel in West Memphis for lunch. They had the cutest kids clothes, Razorback stuff, all kinds of women's sweaters/tops..... Christmas galore. That's just about it! I'm sure to be missing . No one could remember all they had. It was on the road to Home Sweet Home!

We're off to see the wizzard . . .

. . . and it's not the Wizzard of Oz. That is where Oz Girl lives, and I wish I were going to see her. I'll just wave to her. I'm sure she is watching.

But, no, it is Schnapp, my pain specialist, and it is for my required quarterly visit. We should, that is s.h.o.u.l.d. be back fairly early this afternoon. That would be nice. Last month's IVIG is just beginning to wear off, and I have things I *need* to do to get ready to leave before we go.

See you when I get back. Here is my transportation for the day. I see my pilot is ready to go.

Daddy tries on glasses while mommy takes pictures to check them all out later.
He's prepared for the bright sunlight.
"How do I look in these," he asks. "Too girlish?"
He wanted to wear this cap, but they just were not sure of it.
The company might not approve of a Mountain Dew cap.
He likes it, though. You can tell.

Wednesday, November 12, 2008

"Get up and go day" is near

This coming Sunday is "get up and go day" again. Having been there for the port surgery, it seems like IVIG infusion is coming around much too quickly. I am going to do my very best to be ready to go in the afternoon. I want to stop by Circuit City and see if i can find what I need to download my Sony photo card. I really like what I have for every other camera, but you know how it is. Blegh! There's always got to be one. I'm anxious to see the pictures we took on the 31st of the bales of cotton. It is funny that those on the way to Jonesboro caught our attention for picture taking more than those at the gins here close to home. Reminds me of the kids always acting so good when away from home, but let them walk into the house, and within minutes, they were at it. Doing this blog has brought up so many memories. Not necessarily spectacular ones, just everyday living ones. Except for having trouble keeping up with things, life was pretty good. I could go off on a tangent right here very, very easily. And one day I might.

Ashton is doing great this morning according to his momma.

Let's see if I can't find some pictures to share on rainy, lazy days like we are having today. I have enough from over the past five years since Matthew (great-grandson & not shown here today) was born to fill in on any hard to *think* days, and that is without scanning those many, many years before then with my SLR and one-shot cameras. All I need to is to hook up my 35mm scanner and get my slides down here, and oh, my at the history that would burst! Oh, but I've been talking about getting my *stuff* from upstairs for so long, and nagging, nagging about it, they think I'm what? I know what to do, but just need a few arms and legs to help me make it workable. Do all *impaired* individuals go through this? I know there is more I could do that is just mind and matter (computer related). For instance, I could make me a graph to chart my blood glucose. like I had before. That does not require any body involvement, just my arms and hands, but like today, plus about a week prior, I have had to compensate using my fingers due to worse weakening of the outer fingers and arms. Cannot feel much with 4th and 5th fingers of right and left, and for sure have very little use of them. Of course I don't realize it until I go to use them as I normally do and they do not produce any results. Bummer!!! When typing (and I was an 80-90 wpm typist doing transcription) I have to take my right hand and hold down the left shift key when needing to use it. Just look at all the *I*s used just in the past few sentences. Then other times using that key. Sure slows me down, frustrates me, and makes me lose my yen for doing it. By the time I get along, I've sometimes forgotten what I was even writing from the beginning of the sentence. There are other things involved that affects my computer work that I used to do, too, and I am working really hard at restoring them (remembering how to operate specific software), but they just are not here yet. I need to recognize this, as well as everyone else. I had the tremors so bad a while ago that I could not control my hands at all, and I had to take a muscle relaxer. It is just now beginning to take effect. Jim just came in with supper. Taco salad. Let's take another BG and see if things are any better, before eating. My pattern is showing up exactly as always, and I had to take an injection about 30 minutes ago. Rise in the afternoon, drop at night.

Well, I fell asleep, and just been awake for about 30 minutes or so. Here goes. Ready to close up shop.

Ashley and Ashton, what a pair. He loves his momma!
Aren't those some pretty blue eyes?

Then, there is just Ashton by himself.
I cannot find the words to describe this one.

I guess this one sums it all up.
So there!
What a mess!!

Tuesday, November 11, 2008

Happy Birthday and Veteran's Day

Yes, I know it is not called Veteran's Day any more. It is my daddy's birthday, and I'll still call it Veteran's Day for myself. but I think I saw it being called Veteran's Day on TV. Maybe I've got it backwards, huh? He is no longer alive. When I was a girl growing up, he used to joke and say they created a holiday just for him. I wish they had. He deserved it. For many reasons. Though wounded in WWII, getting hit by shrapnel, going to France to the hospital, then home with a huge hole in his back, life dealt him more blows than the war ever did,and they lasted until he died.

He called me the night he died. Why did I know that conversation was different? Special? The Dorrises and Cunninghams were over after Wednesday night prayer meeting, and I gone into the hallway to talk to him. For some unknown reason, talking to him made my heart beat faster, maybe even a bit irratic, or something. I don't know, but there was something to my demeanor that made Jim ask me if something was wrong. He wanted to know if I wanted him to talk to Daddy because sometimes his calls could be difficult to handle. Depending on what he had had to eat and/or drink. But, no. It was okay. He was talking about his life. He had already talked about Brenda, and there was a definite lilt to his voice when talking about her. That's okay. He had told it all to me before. Now, he was telling me that I had given him the most important things in his life. His three grandchildren. Jimbo, Robert, and Debbie. He did not know he had a great-granddaughter Jennifer. We were taking her, Jennifer, to see him the upcoming Saturday. He never got to see her nor the three grands, because he died that Wednesday night sometime after talking to me. We never knew what it was of, except that we knew it could have been the emphysema. That begins a story that is MUCH too long to begin here, tonight. I'm just so very exhausted. Good night to all.


Robert - forever 16
Debbie - First babyFirst great-granddaughter
First great-great-grandson

Sunday, November 9, 2008

Catching up and moving on

An update on *My* Myasthenia Gravis: I was really pleased with my ability to walk from the bed to the bathroom while we were in Jonesboro Thursday night. I told Jim I wanted to try walking to the bathroom rather than riding the chair in there. He looked dubious, but let me try it. I've been telling him that if I do not try things with him there, then he will never believe me whenever I say I can do it. He stands nervously by as I attempt what he considers the impossible.

Here is a picture of my side of the room to show just how far it is from the bed to the potty. My chair fits just exactly between the bed and stand, with the sink and bathroom almost exactly at a 90° turn from where I am taking this picture. That is as close approximation that I can give for the distance I walked...... about five steps.

Comfortably I get out of my chair and take off running easily toward the bathroom door, my legs feeling substantial beneath me. Back into my chair, dressed for and into bed. WHEW! Tiring but exhilarated. Inserting here, when I checked in to One Day Surgery Friday, I weighed, and was able to walk upon the scales more easily more easily than ever before. Now, I'm not blowing this out of porportion, nor have my expectations so high that they will not last nor are unattainable, but it does give me reason on which to base *some* hope.

I *have* had some considerable depression, and do not know what to do about it. I am not happy with my current status, but what can I do, for I think a lot of my depression is environmental.I *have* had to take a few mg of mestinon for about the past month or so, maybe six weeks actually. We talked to Dr. Cauli about that and he said to continue doing it as I considered needed. Stress is a factor. My eyesight has been pretty bad lately, and that is one thing I judge the MG status, and about how much and how often to take it.

My speech is clearing, too. Whereas my mouth muscles had been terribly hard to maneuver, *I* think I am speaking more clearly lately. I had not thought about it until writing this, so that is a good sign that I have not been stumbling when I talk. I can almost say "differentiate" later in this blog. Hip hip hurray!!!! In fact, everything seems to be a *bit* better tonight, and was when we were at the hospital Friday. I was able to carry on a very decent conversation with Dr. Phillips (Phillips County)

So, what is coming up this week? Tomorrow we head for Memphis for a CT at my urologist, Gubin, to check the "loaded with stones" status. There has been a lot of pain on the right side, and downward, with significant bleeding. This makes me think it is all caused by the urethral caruncle, and hopefully not the stones. Elimination of the caruncle and previous stones occurred about the same time before, so it was hard to differentiate tell from where the elimination of pain came. The bleeding also stopped at the same time, too, as well as recently when I have restarted the medication for the caruncle.

Then, tomorrow afteroon I see Latif, my endocrinologist for my diabetes, and hypothyroidism. That I am looking forward to. He has always been one to help me, and get the things I needed, and given me the information I needed. For instance my chair. Two and a half years ago he was the one who got me my chair. Back, earlier this year, he is the one who told me what my infection was all about that I picked up in the hospital with steaks going up my leg, and they gave me an IV antibiotic. Staph. My hero. Wish he would let me take his picture for my records.

Thursday! My man Schnapp! My pain specialist. He was in a bad mood the last time, plus I didn't feel very well then, either. We didn't gel at all. Bless his pea picking little heart. With all I am dealing with, I guess we do get along with my doctors pretty well after all, especially from what I read from other people. But then, maybe other people don't try hard enough to get along with their doctors. None of us is perfect, no matter how much education or whatever is or is not behind our name. There. That's some liberal sleeking out. Actually......... well never mind.

So much for now. Can't think of anything else. Except, oh, yes...... I am still losing weight, and the reduction in Prednisone is not bothering me at all.

Saturday, November 8, 2008

The latest on Coleman

Coleman had scans Thursday and Friday. Bless his little heart. Coleman has been through just so very much. He had an MRI Thursday, Then another one Friday. I'd like to copy exactly what Peggy wrote because written several times over it gets watered down.

We were at the hospital by 9:30 [Fri] for Coleman’s MRI. We didn’t have much of a wait, but it was a long MRI- it took well over an hour. Coleman usually falls asleep, so this isn’t a problem, but he wasn’t feeling too sleepy yesterday morning. I went back with him this time, and when it was over, they brought him out of the machine and he had tears running down the sides of his face. The tech said he was going to make her cry…I asked him what was wrong and he said, “I fink I moved a witta bit!” “I fought I was in twubble.”
Can you imagine that little fellow feeling he was in trouble because he moved a " 'witta bit' ?" Who among you has ever had an MRI? He is just about 5 years old.
After the scan, they told us they had paged the doctor to come talk to us, so we could have a seat and wait. That didn’t sound promising, and of course we were worried- but after over an hour of sitting and waiting, they called us back to the doctor’s office with the boys. I didn’t think it could be TOO bad, because they surely wouldn’t let the boys come back with us, if it was bad news.

*sigh* I was wrong. The news was not what we were hoping for…the cancer has spread quite a bit in the last month again. The doctor was surprised Coleman hadn’t been complaining more. I couldn’t believe they were telling us all of this right in front of the boys! For one, I wanted to ask a whole lot more questions, but I wasn’t going to do it in front of them, AND we needed to put a smile on for them, which was so hard to do when our hearts were breaking. Since chemo is no longer an option, and neither is the 3f8, They gave us an option of starting an oral pill- it’s a study that just opened last week and one other patient is starting it right now. It’s not chemo, and right now I can’t even remember what she called it- I was in too much of a daze, but Coleman will need to keep his platelets above 100,000 to be on the study. They were at 37,000 yesterday. Soooo, we were shuffled out of the meeting with the dr. over to the infusion room where we waited for an hour to get platelets…which by the way took a half hour to infuse!(our bright spot of the day!!!)

They are hilarious…and between Coleman’s story of an “odoe-wess sunk” (odorless skunk) and Caden telling us his jokes, we had many laughs. I told someone I kind of felt like we were on the deck of the Titanic, the band was playing, and we were smiling and dancing while we’re desperately searching and hoping for a life boat. We couldn’t break down with the boys we danced. And continue to THANK GOD for every single moment we have together. We truly ARE so blessed. It was a tough day to sit through and we didn’t get back to the RMD house until 6:00 last night.
There is not one mother among us who can say "I understand," for even mothers who have walked this road or similar road, we each have our own way of reacting emotionally.

Peggy goes on to say,
So Monday will be a full day- we’re going to have a friend watch the boys in the toy room at the hospital while we visit with the doctor and go over our options. I have a list of questions all ready…so we should have more to report after that. We were not able to look at scans, since they were still writing up the reports, and with the boys there, I didn’t want to push it. I will be getting a copy of them on Monday.

After Monday we should have a better idea of when that will be, I think they want us to stay out here to be on the study. I’m going to try to negotiate it so we can go home and maybe find a dr in Des Moines who would be willing to work with Sloan? (something we're praying for) Coleman keeps asking when we get to go home...

For right now, things are up in the air…but our feet are firmly planted in our faith. We’re still praying our hearts out, and trusting that God hears, and is carrying us every step, as He always has.

Then a perfect ending. When asked if he would like to attend the bubble show they were signed up for last night, Caden's eyes sparkled and he said YES! Then he looked over at Coleman, and said, "no... I fink I will stay here and pway my v-smile." What a brother.

"it’s a study that just opened last week and one other patient is starting it right now. It’s not chemo, and right now I can’t even remember what she called it- I was in too much of a daze,"

Hang in there you guys!
We're with you all the way!

Received this week

Well, what in the world would I have received that I'd want to put up here?

First were these "little Jennifer" pictures.

Look at the squiggly little nose. Isn't she adorable? Her mother ~ our 1st granddaughter~ looked just like this............ unbelievable!

But wait.................. there's more......

............giggle, giggle, holding her tummy, she's laughing so hard it looks like. Spittin' image of her mother. I want to see her; it's been over two years!!!!

When she was three months old, she and her Mammaw, ahem, that's me, got so tickled in Wal-Mart, Dayton, and we laughed and laughed and laughed (she a baby laugh, me tickling her, only getting louder and louder). I HAVE to go and see these children, three of my four great-grands! and they are GREAT!). I miss them sooooo much! Somewhere I have to find the money. It is not going to be long before I am going to be able to DO IT. I'm just gonna be able to DO IT! Let's DO IT!

Then I believe these are Halloween pics that Jen sent.
Who is this fine fireman? Looks a lot like Matthew to me.

This was a dark cell phone pic, but I managed to get pretty pink what from it? Are they at Granny Ann's getting Trick or Treats from her? She has Alexander in her arms. He goes for the bottle still.

Only missing Ashton, and I've text Ashley for a picture of Ashton's Halloween dressup. May be one at MySpace. I'll have to check there and see.

So, this is my joy for the week. Thanks Jennifer Anne! I really do appreciate it! We really do want to see more of Matthew, though. Never satisfied am I? hahaha

I love you bunches and bunches!

Portacath go around-around

Do you consider that a nice little get away or what?


Whatdayamean, whatdayamean?

We left here noooot quite as early as we had planned to Thursday afternoon to stay in the Guest House Annex so we would not have to get up and out the day of surgery, but here I am the epitome of falling asleep, and it was late whenever we got away. Think every bit of 6:00 p.m. Anyway. looks like we got to Jonesboro about 7:00 p.m. Thursday night
(thanks Twitter for looking back to see) and had a couple of errands to run, and I was a nervous mess.

I had to be over to One Day Surgery by 7:30, which is about the time we get there for IVIG therapy anyway, so not too bad really. Only difference is I am much more nervous than for the IVIG. Last night a whole Route 44 Diet Coke turned upside down off my bedside table. "I didn't do it," was my first thought because I never felt myself touch it, but *I* was the only one there. I turned that direction, and there just was no coke. I looked on in astonishment before I was able to say anything. Jim had just laid down, and was exhausted, so he got up huffin and puffin. My brown carpetbag was there. Everything we brought was in it, and I could just see it being saturated with coke. Missed by little more than an inch or two. Jim got it all cleaned up regardless of how it happened. He crawled back in bed. Got all comfy. I resumed what I was doing on my computer, and getting me a drink finally. YIKES! There it goes again! Oh, gosh! What is going on? There were ups and downs, but finally all is settled down. Nothing to eat or drink after midnight. So, pretzels and coke (it really was diet Pepsi by that time when we were buying hospital drinks) until midnight. I don't remember stopping my game playing and falling asleep. So. What else is new?

Oh, I just remembered..... I dropped Baby Girl one of those times. Baby Girl? Oh, she was a kitten I tried to help some years ago . Not totally feral, but not fully trusting either. I carried her in a loop of a diaper around my neck (know how, up close to my body. It helped. Precious, our tuxedo cat (Ashley's) adopted her, and nursed her (though never having had a kitten of her own). We all watched. The torties and me. I took pictures but they are on back-up disks I believe. Anyway..... sniff, sniff.... the front door was open just a split second too long one time, and out she scooted. Jim went out for her, but no luck. She was special. Well, this mouse is very special as it replaced my really, really faithful red mouse that had served me well until it died, and when Jim went to replace it, there was no red one, so he had to buy this gold one, and it's name? Why, since it is the baby, then nothing do but to name it Baby Girl.
Okay, I made a conscious effort to place Baby Girl where she would not slide off the bed again. Now, off to gameland, and sleep!

It was interesting arriving at One Day Surgery today. There was a bit of....uh.... not excitement..... not the nervousness.....maybe a kind of excitement really would best describe it. Terry was at the desk at the window, and it was good seeing her there. We didn't know it, but she would be pivotal in the outcome of my surgery later in the day. She is part of my "A" team that is successful in accessing my portacath. Linda is the other nurse, then I apply a resistance to Terry. Remember that for later. Terry and Linda, in ODS. "A" Team.

Jim let's me off on ODS floor, then he goes on down to register me. While waiting for him, I want to weigh myself. Well. Look at that will ya? They've moved things around in here since we left the other day. The scales are up close to the door now. I did a pretty good job of walking up on the scales. Oh, am I a little woman, and oh, my goodness have I lost a lot of weight! Okay. That is kg, and I *have* lost some more weight. Reducing that Prednisone even 20 mg is making a difference.

I am in room 316 this time, which is right across from the nurse's station. What a room it is! Lots different than our usual room we have for the IVIG infusions. It really doesn't take much to impress me. When Jim gets up there we get me into the nice hospital gown, and take our places to WAIT. They come in to do a chest x-ray, lab work, and then an ekg. Melissa (shown below) is my nurse, and gets to take all my history bless her heart. Julia gets an IV started. Wheeeeee........... they're so fast; they're so gooooood! I know because I know them!

Okay, they are all done, and it's only about 8:00. I'm scheduled for 10:30. Loooooong wait, and I didn't bring anything to do for that time. Well, for one thing, I didn't know what time I was scheduled for. I had my U.S. News, but reading didn't seem to do it for me this morning. Finally, Jim asked if I was hinting for him to go get my computer......"You can take it that way if you want to," I told him (isn't he the sweetesst?), and he got up and went back to the room to get it for me...... Baby Girl would get to come, too..... sweet...... I'm crazy.

My computer is better than any anti-anxiety, plus it is paid for (several times over). Just about the time I get connected to a hot spot, here comes surgery for me, right on time. Wouldn't you know it. Just when I am downloading mail in she walks to take me to surgery!! Why couldn't she be late like they usually are? Nooooo, they had to be perfectly on time! So off we go down the hall, through the elevators, and into the bright, white starkness of the OR. Another world. The world in which Donnie works. She parks my bed, and puts a warm blanket over me. Yummy, snuggly.

Then begins the parade. Just a small parade. The nurse anesthetist and I were talking about the risks with MG when two more walk up. One is Dr. Phillips, the other is the anesthesiologist. Dr. Phillips starts quizzing me on what we were doing, and I explained to him that we were removing the existing port for a new one. Why, he asked? Weeeeell, it's like this. It is virtually inaccessible.

What did I mean by that? The nurses on 3rd floor here at St. Bernard's are almost the only ones who can access it. Then I went on to name the various hospitals that the nurses have been unable to access it. BUT, the ones upstairs on 3rd floor in ODS have been able to do it? That's right. Now, to refresh, this conversation is taking place as I am prepped and we (ME, surgeon, anesthesiologist, and others) are getting ready to go into surgery. "Now hon," he says. Then he and I go into a long extended conversation on the pros and cons of having this surgery. According to him I would be risking unnecessary surgery. I sure was in no favor of having surgery, so was in easy agreement with him. Everything seemed to make so much sense. Then. Time. Later, given all the time to sync.

Actually, I am glad a decision was being made for NOT having surgery, rather than one FOR having surgery under those circumstances. It was too quick, and lacked full examination of all facts. I think that is all I really want to say right now.

So, now, was that just a nice little get-a-way or what? I'm just tired rehashing it all for this.

Thursday, November 6, 2008

The Yord's Pay-er by Coleman

Coleman Larson saying the Lord's Prayer.
As Coleman goes in for scans today and tomorrow, his own prayer seems very fitting.
Join Peggy that they will have an answer of some kind so that they do not have to just sit around New York over the weekend accomplishing nothing, knowing nothing. This *has* to be a very rough time for her and Scott. Caden and Coleman, too, of course.
Love to them all.

Wednesday, November 5, 2008

Ring ~ Ring

No, it is not a phone to answer. It is for everyone to look at my hand. Right now it is my right forefinger until we get it resized. On it shines the most multicolored brilliance. And it was the biggest surprise! Never, ever expected that.

We went for my appointment with Cauli last Friday, Robert's birthday, and I was caught up in the day, a bit down. Jim tells me that he had put something aside for me back at the first of the year, thinking of this coming Christmas. However, with the way I was feeling, he wanted to go ahead and give it to me then rather than wait (he's an on-the-spot-appeaser). He thought I would appreciate it more now, that it would mean more to me now. I told him the way I was feeling that day he was going to make me cry, and that's when he told me he thought I needed it more then than wait until Christmas.

After my appointment with Cauli, we went to Chili's to eat. See what they have on their front door? We went on around to Barnes & Noble; Jim went in to get me a coffee and couple of mags while he went into the jewelry store to pick up his ring he was having sized. He came out with a larger bag in his hand, and placed it beside me. I was reading an article in U. News & World Report on cancer, and was a bit nonchalant about it. I found a stopping point to take the time to check inside of it. He confirmed it was what he had told me he had put away back at the first of the year. Well. I knew there was a high probability it was jewelry. heheheh That made me go just a leeeetle bit slower to prolong the mystery.
Out came a box, okay.
(pictures are made on the back of Callie lying in bed with me)

open that box to a pretty velvet box.

Callie continues to hold the pretty velvet box
(funny the different lighting shows her up differently)

Open that pretty velvet box to a beautiful glimmering, shining ring of 8 real stones set in 14k gold, one row for each of my granddaughters, and then one row for each of my great-grandchildren, four of each, total of eight. Pride? You bet!!!
Granddaughters: Jennifer, Ashley, Hannah, and Christen
Great-grandchildren: Matthew, Kaitlyn, Ashton, and Alexander
Say, "Aaaaahhh."
I think you can get a better look if you click on these small pictures to see the large ones.

Here is the ring with my hand on my Razorback throw, solid side up.
I think you can get a better look at it here. I'm just showing it off from all angles.
A very proud grandmother. I wish I were able to be with them all. I'm trying. IVIG infusions...... I'm trying!

My, my hands sure are looking old. Wonder what is causing that?