Small improvements and great friends

There is an African proverb referring to childbirth that I remember from my times of fear surrounding bringing my children into the world. It says, “Being pregnant and giving birth are like crossing a narrow bridge. People can accompany you to the bridge. They can greet you on the other side. But you walk that bridge alone.” This applies also to my current health situation. So much of this i have to do alone. There is no one to take the burden from me as much as they can hold my hand and stand next to me I still have to do this. At first this thought is frightening and isolating. This task is mine but how much is actually in my control? I suspect not much. The passivity of being a patient with a serious illness can be frustrating and confusing if you let it or you can let it ride. This time I am choosing to look at each day because there are too many variables and unknowns to worry about everything. I’m not going online and researching. I’m reading only the information that is given to me by my doctors. And since I see the team daily I just ask questions directly instead of trying to Wiki.

Since the cardiologists and endocrinologists and nephrologist and oncologists have agreed that my orthostatic tachycardia is a result of the autonomic neuropathy due to the chemo side effects we have started medications called beta-blockers to lower my heart rate. Of course, they started several med changes at once so now they are narrowing down dosages to find the best combination. Progress so far is that my standing heart rate has gone from averaging in the 170s to now its in the 150s. I was able to take a walk around the “unit” yesterday and today. Jeffrey kept a death grip on my arm the whole time for fear of me falling but I stayed upright on my legs for two laps around. We followed this adventure with a wheelchair ride off the floor to the cafeteria. It still requires a huge production to get me mobile but once the chair is located and IV pumps moved and wires secured we were off. Bria was a nervous wreck driving the chair so my dad took it over like a pro. Since I’m on a tele monitor I’m not technically allowed to leave the floor but most nurses agree that they just don’t want to see me leave and we always come back in a reasonable amount of time. It cannot be underestimated how good it is to get away from looking at these 4 walls. To help with the “sick person” vibe I have been giving off I have worn my purple wig and neon striped knee high socks for our adventures. Somehow standing out makes me feel more like a person.

This paragraph may get a little nerdy here but it’s a part where my personal and professional life intersect. This autonomic neuropathy seems to be affecting my Vagus nerve CN X. Please weigh in speechies if you have thoughts but my phonation has been breathy and hoarse and progressively worse since the chemo. An ENT stopped by to scope as I mentioned before and he did put incomplete vocal fold closure in his notes and referred to speech therapy again. She stopped by and we talked about vocal exercises and visiting the voice clinic upon discharge. She asked about the swallowing but I was still in denial. But today, After difficulty swallowing pills, coughing on thin liquids, wet vocal quality and difficulty clearing pharyngeal status we had speech come back. She spared me the modified barium swallowing study but did say if I was older or a different person she would have my diet changed to thickened liquids and would want to see more of the physiology of the swallow. So, it’s really up to me now to follow my own rules and use a double swallow after solids alternating with small sips of liquids. I can try pills in pudding, tapioca pudding just to make me feel even older, but I really hope I don’t have to crush them BLEH!

I really am feeling contented this evening and I feel at peace. These moments are not frequent but they happen. The 3 hour pedicure that Bria gave me this morning was also a contributing factor!

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Don’t forget our Driving Ms Daisy moment. Not sure what kind of trouble we could get into at a hospital but I sure was going to try to with purple hair and shameless t-shirt.

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Posted on July 13, 2012, in Uncategorized. Bookmark the permalink. 2 Comments.

  1. Let me know if you’d like me to weigh in on the dysphonia and dysphagia. Appears the autonomic neuropathy may be accompanied by a peripheral neuropathy of Vagus’ branchial fibers. I don’t generally care to speculate, but could if you wish.

  2. I would appreciate your input here, Dr. Krival. I wish you were here to do my eval!

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