Frankie is A-Okay!!

Howdy, all! First of all, I want to thank each and everyone of you that has sent your prayers & well-wishes to Frankie during this difficult time. He greatly appreciates it and thanks you all for thinking of him.  What happened today at his doctor's appointment was nothing short of a miracle. Isn't God great??

Anyway, we got to his appointment on time, but we waited and waited for about an hour before we got to see Dr. Gordon. They were wheeling some guy out on a stretcher who looked in pretty bad shape, so we thought maybe that is what had him tied up for a while. So we waited some more. Finally, the secretary took some pity on us and lead us back to Dr. Gordon's office area to find out what the problem was. Come to find out, his medical assistant flew the coop and didn't tell anyone where she was going, so Dr. Gordon had NO clue that Frankie and I were waiting to see him! Dr. Gordon comes into the exam room all flustered and apologetic and explains the story to us. We completely understood....and come to find out, the medical assistant had a family emergency with her son. She could have told someone about it, but what do I know???? LOL...

Dr. Gordon takes the PET scan results out of an envelope and Frankie and I both gulp and look at each other. The moment of truth boiled down to a piece of paper inside an envelope!!  Never had such a piece of paper been that important to us!!  Dr. Gordon read the report and showed us the pictures and said that NO new areas were identified on the scans. So only the one centimeter growth was shown as "red" on the PET scan. We breathed collective sighs of relief. No spreading or anything, which is what we feared the most.  Dr. Gordon also stated that Frankie may be able to come off of the Gleevec post-op, depending on what they find out at the time of surgery about what kind of tumor it is. He may need to continue for another year and then go off. But to go from being told back in 2003 that the tumor is huge and he would be on Gleevec forever to now....where the old tumor is NO longer seen on the scans as if it were never there at all...we both didn't know what to say or what to do!!  So now we just wait to hear what the surgeon has in mind and when the surgery is.  I'll keep you all posted.

We come home to have a phone call from my cardiologist telling me that the doctor I had been seeing is NO longer seeing patients in the office, only in the hospital now. So I have to start over with a new doctor!  Oh, well,  I only saw the one doctor once and he left notes in my chart along with my test results, so hopefully everything will work out OK tomorrow for me. Let's keep our fingers crossed and prayers flowing again!!!

Tonight we had a very odd thing happen with our computer. Frankie put in a music CD to listen to and it was just a playing along and all of a sudden, we heard a shattering sound inside the CD drive!  At first we couldn't get the door open, the button was jammed. I jimmied it with a tool, and then we couldn't get the damn door to stay closed! The drive kept coming in and out, each time spitting out chewed up CD onto the carpet. It's all inside the drive, though and it no longer works. So Frankie called tech support and of course, it was after closing hours, so they will give us a call tomorrow. Hopefully not at the same time as my appointment!! What are the chances of THAT?  All it needs is a new drive replaced and it's good as new. So hopefully we can have that taken care of here at home and real quick. I don't want to have to send it out...it takes forever to come back!!!! :(

Well, my eyes can no longer focus and my feet are big as houses, so I'm gonna go to bed and get my feet elevated on my special pillow. Hopefully I'll have a computer to use tomorrow to report on how MY tests and appointment went, but I'll keep you all informed as soon as I can. Hope you each have a happy and well rested night!!!!

I love you all!
Until next post,
Missy

A Little Good News This Time

Howdy, everyone! Just wanted to write real quick and let you know how Frankie's test turned out. We've had a really long day and both of us are exhausted, but it turned out OK. The surgeon came out and talked with me while Frankie was in the recovery area and he said that his stomach was completely clean, didn't see a tumor or mass anywhere. This had had happened once before, when we very first got to Phoenix after my mom died. Frankie was having some problems swallowing and he told the primary doctor, who then referred him out to the gastro-intestinal specialist who then did an EGD...the test where they take a scope that has a camera on the end and put it in your mouth, down your throat and into your stomach and portions of the small intestine.  At that time, he had a CT scan that showed a "shadow" in his stomach, so they did the EGD to confirm as we thought the GIST was coming back. BUT, at that time like this time right now, it was a false alarm and they couldn't find anything then, either. Thank God above!!!!

Now we wait for the PET scan results and then he will be scheduled for surgery to have the little tumor removed from his small intestine and biopsied for cancer. Keep your fingers crossed that Frankie will dodge the bullet again and miss having a relapse. That would be absolutely fantastic!!!!

Oh, and I drove us home without glitch....after my mother-in-law and I  found him! We were told the wrong suite number, so when we came, we parked in the lot by the outpatient clinic. He was going to the endoscopy lab, though, and we had to hike it to the hospital and of course, my walker was at home as I forgot to put it back into the trunk after our shopping expedition last night!!  I made it, though, and when he was ready to go home, my mother-in-law and me hiked it back out through the hospital and the outpatient clinic and got the car. Then, we couldn't find the main entrance. After a little comedy of errors, we did find Frankie and as I went past, he was in the wheelchair waiting for us and he gave me a little wave.  He's so sweet!!!

My legs are killing and it's Frankie's turn for the computer so I'll close this post. I hope you all are doing well and are happy.

Until next post,
Missy

In The Midst Of "Fibro Fog"

Hello, everyone!
Whew, this is one day that I am glad is almost over. I am so tired, I can barely keep my eyes open and it's not even 6pm yet! Pretty soon my husband and I will have the same bedtime as the school children, or going to bed as the sun is doing down! Gone are the days of young, where I'd be revving up to live the night life. In my teens and twenties, I LOVED the night life and felt more alive and functional. The mornings would be horrible for me and I couldn't ever get awake before 1pm most afternoons. That is why when I worked, I worked the night shift. Not because it's quieter (anyone who says THAT obviously works days as night shift was NOT quiet at any hospital I ever worked at!) but because I was a lot less stiff and my joints had a long head start to be functional by the time my shift started at 7pm.  And the infamous "fibro fog" would have lifted by that time, too. Not always, but most times.

I don't know if I ever explained the term "fibro fog" to those of you that don't have fibro. It's a condition that renders your brain completely blank at certain times of the day or night. It brings no warning....one minute it's here and you couldn't have a rational thought to save your life and then the next minute it's gone, and you can think again!  It like a heavy blanket over your brain....it just gets "dull" if you know what I mean. That's the best way I know how to explain "fibro fog."  It just makes you feel numb and dumb!!! People ask a question and you just sort of stare back at them, not knowing what on earth they are talking about!!  I guess when you are older, it's called having a "senior moment." Whatever the name, it sucks!!! And I've been in this fog on and off for a matter of a month now! When I need my brain the most, it takes a hike!!!

Anyway, today Frankie had his PET scan that will show his surgeon if he has any "hot" spots inside him of cancerous activity. Cancer cells grow much quicker and use up glucose, so with this test, he is injected with a radioactive dye based on glucose so the cells inside him that "gobble" the glucose up the quickest will light up on the scanner as being "hot" or red spots.  This means that that area of his body has a tumor there that is quickly growing and using glucose. If nothing is seen on the scanner, then he is "cold" as nothing has eaten the glucose injected inside his system. We are hoping that is the case. But, if worse comes to worse, we are catching this at the very earliest stage and treatment options are much better. In Frankie's case, the only options are surgery and that medication called Gleevec or Sutent.  We will know much more after the surgeon gets the results and see what course of treatment he should be started on.

I'd be lying if I said Frankie and I are taking this well. We are both very scared and worried inside. We've dealt with this before and thought our battles were over, but nothing, I"m finding out, is EVER really over with. It just kind of lurks in the background, waiting to pounce.  We both haven't been sleeping well, so naturally my fibro is taking full advantage of this fact and the "fog" is worse than ever. I don't even know what day it is, for Heaven's sake! I didn't learn until late last night it was Tuesday, not Monday like I had thought!  So I missed "Hell's Kitchen" premier because I thought it was Monday night! :(  I swear, I need a keeper!  Frankie and I have so much going on at the same time, our appointment book is just a big mess.  If we didn't have doctors to go to, we'd have no where to go!!!

The swelling in my feet has been horrendous today. My shoes gouged into my feet, leaving deep crevices in them that hurt sooooo bad. After I write this post, I'm going to lay down, prop them up, and call it a night. I waited over 2 hours in the little waiting room at the PET scan place and just sweat my butt off as I don't think they had air on in there.  It got to be 97 degrees today and my hair was just soaked. The receptionist felt for me and said, "I turned the air up more for you!"  (Is it up or down for cooler? See-that fog again!!)  ANYWAY, when the test was over we got back out onto the roads of rush hour Phoenix. My favorite time of day!!  But we finally go home and I took off my damp clothes and got into my nightshirt. My feet are KILLING me....swollen, pain, pins and needles, everything rolled into one.  Tomorrow I gotta go shoe shopping at Walmart and get a larger shoe. Hopefully they can find the cause of my swelling and fix it.  I keep praying for that!!!!

Well, next on the calendar is Frankie's test on Friday where the surgeon takes a camera down his esophagus into his stomach and examines what is down there. Hopefully NOTHING is there. Then he will inspect a little of the small intestine. Maybe take some biopsies if able. Then we see what happens with the biopsies and when he will be scheduled for surgery to have them removed.  So please keep us in your thoughts & prayers. We need 'em and we pray for you, too.

I'm gonna close and give my poor brain a break. The heat is here to stay in Phoenix, we'll be up to 110 by the early part of next week.  Why can't we have these health crises during the winter?????

Hope you all are happy and healthy and thank you for "following" me along with my stories.
Until next post,
Missy