Haven’t slept well the past few nights. Thought that my cat naps during the day may be to blame. Tried to stay active during the morning and afternoon but the fatigue hits hard and I have to lie down.
The positive side is the mental cloud has lifted. Knowing I would spend many hours in bed after surgery, I had hoped to do some reading. Some of you provided books and magazines to help me pass the time. I couldn’t get through a paragraph without pausing and realizing I couldn’t recall what I read. Likely the lingering effects of anesthesia and the fentanyl. Just something I was not prepared for. Good news…Dramatic improvement over the past week. I read one book and started another. Read magazine articles and worked on puzzle books I received. Having a noticeable improvement like this has been a big boost.
Decided I could start in on the 900 emails in my work account. All I can say is I am lucky to be on leave. Also grateful to for the awesome people I work with for taking care of everything. I was starting to get nervous about all the work I was returning too (I guess another sign I’m getting better), but the snafu’s are being handled. (Maybe I should take more time off?)
I was told before having surgery that the pain and discomfort from eating too fast or without chewing enough will teach me quickly to change my habits. I was plugged again this evening. In this case I think it came down to not chewing enough. I had my timer on to pace myself so I don’t think it was volume. It didn’t last as long as the prior event. You can teach an old dog new tricks, it just takes time.
Sue, Conor, and Kiley have been through a lot these past few weeks. I’ve always wanted their lives to be as normal as possible given the circumstances. I had scheduled my surgery when the opportunity for a vacation came up. It would be 6 weeks post surgery. Even if I had the energy to travel , I would not be able to do much more. I’m happy that the family is enjoying time away.
Most of my recovery has been spent in the family room. A majority of those days I’m probably in the room 20 hours. With the family gone it was also my time for a change of scenery. For the next few days I will continue my recovery at the beach. Happy to have a different sofa to sit on and a different view. Mom drove me down and is keeping an eye on me so I’m not on my own. #notreadytosoloyet
Last night was Shanna’s (Conor’s girlfriend) graduation from Henderson High School. I tried to plan my day to have the energy to attend. Grabbed a pair of pants from my closet and a belt hoping they would not be too baggy. Was shocked to find they were a good fit. Thank goodness for Conor and fate putting his pants in my closet.
We had to park at the furthest end of the lot from the stadium. The one time I thought handicap parking would have been nice. A walk I took for granted 2 months ago is now an accomplishment. The stadium bench was not comfortable but it was a nice ceremony and I was glad I could make it.
We were invited to join Shanna’s family for dinner at Teca in West Chester. Unfortunately things did not go well. I avoided the temptation to order a drink. Too soon to test handling alcohol. Should have had the same discipline with the shared appetizers. I took 2 pieces of calamari off the plate. My logic was they were smaller than the pills I was swallowing for antibiotics and I wouldn’t have a problem. Shortly after I had the sensation that something was stuck at the bottom of my esophagus. I small sip of water did not help. After a few minutes of enduring contractions I excused myself and was able to throw up in the bathroom. That’s a whole different experience without a stomach, a story for another time. I felt better, sat down at the table, took a sip of water to find I did note clear the blockage. I was warned about the potential for “plugging” and told not to worry in most cases it would pass. It was embarrassing. I made 4 trips to the restroom. Couldn’t eat or drink. Kiley finished her entree and offered to take me home. Had a few more visits to the bathroom that night. Even the mucus and saliva was backing up. I settled into the recliner and did my best to get some sleep upright. At 6:00 AM I took a sip of water. I felt discomfort but no blockage. Tried a bite of protein bar an hour later. All is clear and I’m easing back into my eating regime.
Add to the adjustment list that I need to be comfortable with who I am now. I was out with family and friends who have been nothing but supportive and were through this. It was still an awkward and embarrassing situation for me.
Today is the 30th day at home, 40 days since surgery. Counting wasn’t necessary. I know this because I’m down to my last syringe. Tonight is the last night I will give myself a lovenox injection before going to bed. My naps are shorter and I’m capable of about 1 hour of light activity before I need to rest. St this level of movement I think the timing is right to end the anti clotting injection. One more milestone in this journey.
(Note: I wrote this 3 weeks ago and forgot to hit “publish”. )
Consider this my universal “excuse me” so no one thinks I grew up without being taught proper manners.
The one side effect that I experience from not having a stomach is gas. Simply put. There are times I burp a lot. And I do mean a lot. Let’s just say I’ve been compared to Shrek. Without the stomach there is no volume so I just fire off a series of short bursts. I try to excuse myself but by the tenth time it doesn’t seem sincere and I give up. I think it is caused by the smaller bites that I ingest and chew. It leads to me swallowing more air. It doesn’t seem to be associated with a particular food. Hopefully in time I will adapt or adjust how I’m eating to control this. Until then, this is part of my life. Feel free to avoid sitting with me while I’m eating.
Of all the possible side effects that others have reported, dumping syndrome, cramping, reflux, I’m not complaining. I know things could be a lot worse. Counting my blessings…
There have been a few moments of “normal ” recently. On Memorial Day, I had company at home and spent some time visiting with the neighbors. On Tuesday, I attended the award ceremony at Kiley’s high school. While the effort tired me out, it felt good to be out doing things I wouldn’t have thought twice about 6 weeks ago.
Today was my biggest outing. Conor was my driver to my 10:00 AM doctor’s appointment. BP 118/ 78, weight has been around 177 lbs for the last 10 days. This is a good target weight that I will try to maintain. The last suture was removed. J tube incision on the left is healing. The incision from the drainage tube on the right now has a scab. The surgical incision looks like someone drew a line from my sternum to umbilicus with a fine tip pen. While I’m not happy with the lack of energy, I was told that it would be about two more weeks before I turn that corner. I was cleared to increase activity within my limits. My physical restrictions are limited by energy and flexibility. My movements are restricted by the scar tissue in my abdomen. On bending and twisting, I fell tugging. That will clear as I become more active.
Speaking of more active… I felt good on the way back from HUP, so Conor and stopped by PCOM. Wanted to let people know and see that I am mending. It was a brief visit but being back in that building helped me feel “normal “. For those I missed, I will see you soon.
It had been 4 hours and I realized it was time to feed Conor. We stopped at Chipotle. I consumed a few bites in the time it took Conor to finish a bowl. Something as simple as eating out helped my motivation.
I realized during all this that I would likely pay for the level of activity but well worth it. An afternoon nap and I’m back to the spot in the family room that I’m wearing a hole in. I don’t have big expectations for energy tomorrow, but we’ll just wait and see.
D.O. graduation was today. On good days I make it to about 3:00PM before I need a nap. On the less good days I also nap from 10:00 – 11:00 AM. Today was a good day which means I got to watch the live stream of graduation. Wishing the class of 2019 all the best as they move on to the next level of training.
The surgical incision, sternum to umbilicus, was closed with Steri-strips. No incision care, just wait for them to fall off. Found some on the shower floor. Another sign of progress that I’m healing.
Changing the bandage over the feeding tube is a slow process. A sterile sponge next to my skin and a second outer layer of gauze. Surprised to see both ends of the tube between the two layers. Not sure when it pulled out. Guess that’s good news that I didn’t feel anything. One less thing to worry about and one more sign of healing.
Waking at some point during the night creates a dilemma. Do I try to fall back to sleep or do I try to eat something? It has been 5 hours since that protein biscuit, there should be room. The walk to the kitchen along with the calories will likely disrupt my sleep. Sleep or calories? Calories or sleep? Not that I need to be awake at a particular time. It is hard to judge where I am in recovery. Was that nap after my long walk the length of Howard Rd progress? Was it a good day or should it be 3 shorter walks and no naps? As mundane as these questions are, they make one realize there is no guide to recovery.
Tonight’s answer was lemonade. Unfortunately I’m left to grade my own test to which my response is “Goodnight!”
P.S. Shoutout to Dave. A good friend who often has trouble sleeping and may be awake this very moment asking himself similar questions?