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Well. Like I was saying, you need to think about how demyelination could affect the entire body. Unfortunately, I really must have missed this part of the conversation, or I wasn’t paying attention; I don’t know, But if I knew then what I know now, I could have saved myself a lot of pain and anguish. That’s why I call it insidetrack- learn from my mistakes. Here’s the story.

I had absolutely been looking forward to my sister-in-laws visit over Memorial day for weeks- a little bit of normal. The kids LOVE their cousins, simple stuff, simple food, did I mention a bit of normal? Chemo was reeking havoc, but every time I thought of my SIL tears came to my eyes- I was so happy to see her. I am very fortunate that we “get” each other. She has a pretty awesome older brother, too.

I complain a lot about my lack of memory of this whole endeavor. My friend who has watched me go through this believes my memory loss is more of a blessing and a natural defense. “Demara, you were in a bad place, and you were very sick. You probably really don’t need to remember a lot of this.” So let’s get this story going, now that I’ve set up all this suspense…

What I remember….

Dr. Yoda had dropped my steroid dose more than half earlier. I remember reading that for some, this can cause pain. UNDERSTATEMENT OF THE YEAR. I remember rolling on the bed late that night, howling in pain. Of course this is the middle of the night, but I took everything in the medicine cabinet to try to subside this pain. All over my legs. I could barely walk…. I told HH, we gotta go to the emergency room, this is not right. This pain is unbearable… I kind of remember coming down the stairs of our house- only because it was more like a falling down of the stairs. Remember, I had very little control of my limbs at this point. And I had taken all sorts of pain medication to try to help me, not the greatest combo.

I have no recollection of the trip to Vandy. I do remember getting to the ED- once again, got right though. Suppose it helped that by this time I couldn’t stand and was crying (middle of the night visits sometimes help too- only really sick people there by that point).  Memory black out, except for Dilaudid- an absolutely wonderful drug, and once again, diagnosis- constipation, leg pain. There’s your problems.

Now for people on chemo, this really is a problem. You cannot give an enema- could introduce or puncture the colon, way too risky while on chemo with WBC <1.

Memory black out. Until, drink a gallon of Golytely. Oh, goodness. Those of you who are nurses, you know what this means. Those of you who are not- let me explain. It really is a gallon of salty water-like crap that you have to drink. Until you poop clear water. I can’t walk. I haven’t gone in close to a week at this time (and I was taking laxatives at home if you want to know with no avail).

So what do you do? First, I do remember asking for an Nasogastric tube (nurses once again know what this means if you actually ASK for it, it was that bad). Answer- No. Mostly because of course, because it was night shift. Next call your Mom. I had drank some by this time, maybe a quarter, once again, no result. Then you cry to your Mom and Dad who are an hour away, who then come threaten to pour it down your throat. God Bless my Dad, I knew he would come do that if it came to it. So, you keep on drinking. And you think of the word sacrifice, you pray. You hear the word, “Believe.” Day by Day, step by step, breath by breath.

And then for the second time in your 40th year, you poop on yourself. And you realize that chemo and cancer or in my case HLH is more than anything that you have been through before. It takes your body, your mind, and it tries harder than anything to take your spirit. And at that moment you are almost too weak to even care. That is when God sends you an angel feather. Someone texts you, you see a bible verse that just fits perfectly, someone sends you a FB message or comments that they are praying for you. And you realize again that is all you have, prayer and faith. Hope is the medicine for the miserable. Sometimes it is very bitter, sometimes it is the sweet.

My kids had a wonderful time with their cousins, I missed the whole weekend. I hope to make it up with you Shelley.

Four days later you go home. You can’t go up your steps without 3 breaks to regroup yourself and try to move your legs. And you continue. You hope that is the worse, but you don’t know. So you have faith and you pray that you will have the strength to do this for yourself and your family. And you have gratitude that it is you who are making the sacrifice, not anyone else. God bless those that have to watch.

Down on 4. (if you can see through your tears, this is a running mantra. My hubby always says it is mentally easier to hear down on 4, than – 6 more to go!)

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