I am so tired of the phlegm, of the goop, of the snot. I am so tired of the acid reflux. I am so tired of the itching that becomes nearly unbearable after dark and how small blisters are still forming after a total of twelve weeks of prednisone that have caused leg swelling and blood-sugar readings that are off the chart. I am so tired of not being able to feel anything in my lower left jaw and lip. But most of all, I am so tired of not being able to swallow. The other night I dreamt I was eating and I can’t tell you how satisfying it was to feel the food going down normally and not ending up in my windpipe. Alas, it was only a dream.
Yeah, I’ve made adjustments to my physical life, but emotionally I’ve still not fully caught up. Ben brought a big, juicy burrito home for lunch today that he offered to split with me. Earlier, his dad dropped off some pastries from a French bakery. I could have put either one in the Ninja and turned them to liquid, but some days it’s just not worth the effort.
All I know is that a year ago before the sugery if I knew what the situation would be 12 months later, I would never have gone through with ANY of it.
And with that I’ll close for tonight. I’m going to go devote my full attention to the remainder of Celebration before heading to bed. Tomorrow’a new day, no doubt full of fresh horrors, but we’ll deal with them as they come. So get a good night’s sleep my friends.I know I shall try.
❤️ you all.
—MA
5 comments
I hope your new day has been less frustrating. My father had the same regrets after his lung removal and eventual tracheotomy due to cancer.
I really wish I could offer some words that would help easy your suffering. I do appreciate your blog and check in often. I share your disgust for you know who and if your posts reach the Oval Office, that would be great. Give your hubby a hug. I’m sure it pains him knowing there is only so much he can do also. Peace.
I understand exactly how you feel that way. Stay strong. Sending healing vibes.
Mark,
I am so sorry you have to go through this on a daily basis. I hope you are talking to others who have had this same surgery. Sometimes, there is healing in sharing with those who are on the same path.
Hugs!
There is a virtual (Zoom) cancer support group that’s led by my either my surgeon’s PA or the speech/swallow therapist I was seeing that meets once a month. I attended one of these meetings and was summarily ignored. I tried to contribute to the conversations but it was obvious this was a long time coffee-klatch group and I felt very out of place. It reminded me of the Al-Anon meeting I attended back in the early 90s when a guy I was dating at the time (who was in AA) suggested I attend to better understand what he was going through. I left the meeting practically screaming and never returned; it seemed I was the only sane one in the room. While this kind of group “therapy” (for lack of a better term) may work wonders for other people, it definitely isn’t for me.
Prior to the surgery I reached out to Immerman’s Angels; a group that also provides support on a one-to-one basis. They match you with someone who’s gone through the same thing who can help you navigate the emotional and physical aspects of the procedures. They were never able to match me with someone who had that same surgery—or even anything similar. So I gave up on that route.