Gift from Sara Yates

My friends are so kind, generous and thoughtful to me that I do get moved literally to tears. Ask Melinda. 

The mailman and parcel services are getting a good workout too. Today I opened a box and inside is a beautiful, thoughtful card and a cool looking Texas Rangers mug from good friend Sara Yates. I can really use the mug to help measure and control my daily fluid intake for Dialysis as purpose. Thanks Sara. 

And thank all of you for your gifts but I very much appreciate the prayers and words of encouragement. It fills my soul with much needed energy. 

Ugh…Another fall. 

This is getting bothersome! I fell down again this morning but I am still extremely lucky because there is no damage. No broken bones anything. 

As mentioned in an earlier post, multiple myeloma patients are at a very high risk for broken bones. 

The main reason for falls both today and last Friday is because I am getting very dizzy of late when I stand up too quick from sitting and start walking. 
My hemoglobin count is the culprit. As of my last blood work by my Oncologist, my hemoglobin count was at 7.8. That’s low. According to the Mayo Clinic, “low hemoglobin count is generally defined as less than 13.5 grams”.

The lower the count is lower the amount of red blood cells my body is getting for oxygen and I feel faint when I get up until my body stabilizes things. 

A blood transfusion is a quick way to boost the red blood count and I did have one a couple of months ago and felt great afterwards. My Oncologist has not ordered one this time. Yet. 

Today I was headed to the restroom and started feeling dizzy and faint about halfway there. I made it to the door handle and hit the floor, landing on all fours. I stayed that way for a minute until Melinda helped me up. I made a quick inventory of my body and declared myself fine. 

A beautiful gift from Minnesota! 

I contintue to be amazed at the pure kindness and generosity of you, my friends. Arriving today was simply beautiful hand crafted quilt courtesy of my very dear friend Susan Horton Kuehn. I can’t believe the job she did! 

I should have known something was up when she asked me my favorite sports team. Texas Rangers was my answer.  I had already revived an equally impressive quilt a few weeks ago from my high school classmate Dee Dee Rainbolt Dozier and I can use them because one of the things that comes with Multiple Myeloma many times is Anemia, which I do have, and I get cold a lot. Especially during Dialysis. The quilts come in handy!  

Saying goodbye to Otis

Living with Multiple Myeloma means dealing with brittle bones, one of the many nasty ways the cancer dictates to its victims. I have to be extremely careful as I move about that I don’t fall because it won’t take much to have a disastrous injury. 

According Web MD, when cancerous plasma cells are in bone marrow, your bones can’t break down and regrow (remodel) as they should. This makes them thin and creates areas of abnormal bone called bone lesions. Almost everyone who has multiple myeloma will have bone lesions at some time. 

I fell and broke a bone in my shoulder in February during my hospital stay but luckily it healed pretty quickly. I’m still very weak  after that extended hospital visit and use a cane to steady myself and prevent another fall. Unfortunately there are some things that all the cautious measures can’t prevent. 

Last Friday I was home by myself and went to the refrigerator to grab a drink to take some medication with. My trouble began as as I started getting dizzy as a result of my chronic low hemoglobin which causes dizziness when I get up too quickly from sitting. Usually I can stop and steady myself with the help of my cane. Ummm, I didn’t have it on this short walk, however.  

I tried to grab the top shelf of the refrigerator but that didn’t work as it was cold and slippery and so I thought I could then pivot to my right and lean against the countertop to balance and steady myself. The problem was my sweet pittbulldog Otis was occupying the area and he wasn’t giving it up, as usual. Otis folllows me all over the house and Melinda and I had fears that it would be an issue someday. That day had arrived.  

With a slippery shelf and a firmly planted dog my only option was to fall backwards. My tailbone hit first and then my head. After the initial shock I tried to get up off the floor and it took me a couple of minutes because my legs are so weak. But I made it and was ok. No broken bones! 

When Melinda got home from work I didn’t hesitate to tell her about the incident. We had discussed the possible danger Otis caused when it came to my freely getting around.  Melinda LOVES dogs and Otis is more of her pet than mine but she had firmly stated previously that my safety was #1.  I hoped we’d never test that statement but the time had arrived and she spent the evening looking for a new home for Otis and a nice couple picked him up Saturday. 

We were both saddened but I see it as another victim if this terrible disease i’m battling. 

 

The Missing Week Of My Life Part 2

The emotional trauma I went through is kind of hard for me to describe and I want to thank everyone for giving me some time between posts to gather myself. 

Also, Melinda says that I left out the reason why my hands were tied and bound while in the hospital during my confused period. It’s because right after I had a procedure to install a catheter in my chest to draw blood, I ripped it right out and had to be rushed back to surgery to reinstall. I have absolutely no memory of any of that. 

There is one other “event” that I can share with you and it’s the only one that I think occurred while I was not in the hospital at UT Southwestern. I had been transferred to its sister facility Zale Lipshy for physical therapy and as far as I knew the episodes had ended a week or so earlier. 

I was enjoying the company of my wife Melinda and my sister Bridgette Sims and the view out my window of downtown Dallas. A thunderstorm was approaching and being an aviation fan I wondered how the airline traffic would handle the storm? Well, it just stopped, that’s how. The planes just froze in midair one after another. I asked Melinda and Bridgette if they could see it too and of course they said no, after looking at each other. The TV was on the local news and I wondered out loud why they were not covering this story of planes suspended in mid air over the city? 

My wife and sister left an hour or so later but the planes stayed and I just stared at them until I got sleepy. The last thing that happened to me, that I know of, was as I fell asleep that night the sprinkler and smoke alarm on the ceiling were moving all over the place. I really can’t explain it very well but it’s like they were playing keep away from each other. 

I have not had an issue since I got home from the hospital, thank God. There is one incident that happened during my missing week that I keep to myself and I have shared only with Melinda, but it’s too horrific and shocking to share with anyone else. 

That incident and all the others live with me and I rerun them almost daily, though perhaps less frequently as time passes. I think that the fact that I have never been high on drugs is the reason why those things bothered me so much. Maybe for other people they would actually be enjoyable? Not for me. 

The Missing Week Of My Life

 This is a post I have both dreaded and anxiously looked forward to writing. I have been composing it in my head for months but have known I had to be in just the right mood to put on the electric canvas. Maybe I’ve reached that point in my recovery from Multiple Myeloma? Maybe i’m ready to put the missing part of my consciousness to rest for good? Melinda thinks I might need help to completely do so and she may very well be correct, as usual. 

When I checked into UT Southwestern Hospital in Dallas on 1-9-17 with failing kidneys and an inpending cancer diagnosis, I felt fine physically and emotionally. I had never been diagnosed with any “problems” or social disorder whatsoever. Many friends had likely doubted that for years, but that’s another story.  

All that changed from roughly 1-23 to 1-28 of this year. The dates are not exact because it could have been a little before or after as well. Regardless, it’s a time period that I spent in a daze of hallucinations, nightmares and confusion. I’m not really sure what to call it except that my family was fearful for me and maybe a bit of me. At one point they felt, advised by doctors, that I was slipping into a Coma. It was easily the medical lowpoint of my life. And I don’t really remember it. 

I have identified anywhere from 12 to 15 “episodes” that lasted anywhere from days to hours. Melinda says that I spent one entire day on my hospital bed repeating the word ‘shit’. I don’t know why and have no memory of it. I also spent time in the studio audience of the ABC show The Chew, a program I had watched a few times perhaps. But I was there as clear as day. 

This picture was taken by Melinda during my missing week of consciousness. I don’t know my mental state here but I’ve never looked so bad in my life. It took a long time to get rid of that beard.


There has never been a firm reason given for these events but my doctors felt that as my kidneys deteriorated my electrolytes   became unbalanced and may have triggered these events. I have talked to people in a couple of my support groups who themselves went thru this and I have read about others that have as well. So, it’s not like I was the only one and that helped me feel better about it. 

The thing to understand is that the world was normal, and EXTREMELY realistic for me during all this. I just did see me in a hospital room is all. One time I spent an entire day watching the set of WFAAm news. I watched the comings and goings with great clarity and kept asking a “person” next to me when Melinda was coming by with lunch? 

That “person” is very key because I later found out my family had requested a person be with me 24/7 for fears I would harm myself. They also asked that my hands be bound. It’s why in almost all of my events I contain almost my “sitter” and my hands were bound.

One great example of this is I had an event wher I had to as begging to see Melinda but I was told it’s the middle of the night by my sitter and the same by my male nurse. He was adamant about it to the point where I wanted to get up and kick his ass. Except my hands were tied, literally. This event took place in a room I had never seen and included an entire wall of TVs showing reruns of the same Steve Harvey Show. 

Another time I was in what looked like like a warehouse or storage building and once again begging to see Melinda but my nurse (a different one with who I had been very friendly with prior to these events)  vehemently said that is not possible. Then another person which was my sitter put a gun to my head and told me to sit down. I discussed this event with a hospital psychologist much later and to me it was very real but he didn’t buy it. 

I was also driven to and held hostage at a ranch and forced to have an MRI by a nurse and another person. The sitter of course.   I was scared because because it was an old and dirty MRI machine. I was screaming not to go inside the MRI machine but with my hands bound what could do?

One time I was being held, against my wishes underneath a bridge at Harry Hines and Inwood. I was in a hospital room because I saw an IV machine and so forth. It was so real that when a rain storm came by could smell it so vividly and clean. There was a person in the room with me (sitter). Once again I asked to have Melinda call me right now! This sitter said nothing at all which ticked me off more! Soon my nurse appeared. The same one I had when my the sitter held a gun to my head. She told me I was changing rooms, which I was cool with. 

At that point I started seeing snakes move across the ceiling. I even identified them as King Snakes to the nurse who said she could not see them. Then, the room started rapidly changing into a real hospital room around me. A new sitter appeared, an older lady this time. I asked her why is the room changing so quickly and she said nothing. 

A few minutes later the room makerover was done and it had a sign that said  ‘The Cecil Savage Memorial Room” . I kid you not. Then a few doctors showed and I said thanked them for the private room in my name and they just looked at each other and moved on. 

Finally I’ll tell you about the oddest hallucinating event of them all. It took place I think the same day I ended up with the new room. 

I would look out the window and see what I thought were a large flock of birds. As they got close they became what looked like airplanes that finally appeared as a big, jumbled ball of airplanes of all sorts that were right outside my window, so close I could make out passengers and polite waving at me. Then they would fly away and a new batch would show and do the same thing.

More later. 

Painful Night 

Multiple Myeloma  is a sneaky, vicious form of Cancer because you can never tell what symptoms will hit you and when. 

Last night was one of the worst nights for pain since I was in the Hospital back in January. The pain was centered in my back but moved down both legs making in really hard to walk with any confidence I could get around very well. It was excruciating. 

 Melinda, as usual, was quick to respond and gave me hydrocordon, a fresh Fentyal Patch and  Ropinirole,  which is a muscle relaxer of sorts for Restless Legs Syndrome which is a nasty but little understood condition that I have. 

It took a couple of hours but the brew of those mdications nulled the pain and discomfort enough so that I could get to sleep. 

I had wanted to just sit in the recliner and watch the Ranger game but could only make it to about the 4th innning and I had to get in bed and I finally fell asleep. 

Such is the life of a Multiple Myeloma patient.