All afternoon and evening, Stephanie had been frantically working on cleaning the house like she was expecting guests. I knew we were expecting her boss and his wife for dinner next Monday so this seemed a bit premature. Fortunately, the kids were helpful in doing some of vacuuming and cleaning. Stephanie also made cookies and I could not fathom why since her party for work was Wednesday and she is very big on fresh cookies.
The doorbell rang three times tonight. The first time was a delivery from UPS. The second time, Steph grumbled about the UPS guy missing a package. The third time was just after Forrest went out to the mailbox to get today's mail and I assumed he somehow locked himself out. I then heard caroling and thought that it was a nice throwback and enjoyed listening to the song from my couch.
I then heard them coming inside the house and thought that was very odd until they came into the room where I was sitting and I saw familiar faces of my coworkers and friends. Needless to say, I was very stunned. More than a dozen people got together to come to my house, just to sing me some carols and let me know that, although I am not at work, I am not forgotten.
They brought joy to this night and tears to my eyes. I know I am loved but to see this sort of action from coworkers and friends just shook me to my core. They brought along a stack of Christmas cards, signed from many at work who were unable to come and also a gift of a heated blanket so that I don't have to crank the heat up and sweat out everyone else in the room.
How do you repay this sort of kindness? How you do tell people that they have given your soul new life through their gift of time and song? My only possible payment is to make my way through my current struggle and pass on the same kindness to others. I am humbled. For those, reading my blog, who are Christian, this is exactly what Christ meant when he said "For I was hungry, and you gave Me something to eat; I was thirsty, and you gave Me something to drink; I was a stranger, and you invited Me in".
This Christmas, remember those who are sick. Remember those who are hungry. Remember those who have no place to live. If you truly believe that there is a war on Christmas, the way to fight that war is not to complain about people saying 'Happy Holidays' but it is to remember and take care of those who are not as fortunate as you.
Monday, December 14, 2015
Back on TPN but I am eating some
On December 7th, I got started on TPN again. This is my third time and I am getting to be an old hand at the routine. I am being infused over a 12hr cycle so the TPN starts in the evening and then finishes just as I get up in the morning which is very nice. It still interferes with sleeping somewhat but not having to carry the bag around all the time is very nice.
I started on 1000 calories per day which is a nice improvement over what I had been taking in. After a couple of days, they then advanced me to 1500 calories/day and that is where I am at now. With 1500 calories/day through TPN, I don't need to consume a huge amount of food to maintain or gain weight now.
As to eating, I am slowly feeling out my boundaries of what I can eat and what I cannot. My near term goal is to do fluids for breakfast and lunch with semi normal food for dinner. My first attempt at this was on Sunday, December 6th.
We had a belated birthday celebration for Stephanie and we got dinner from Five Guys. A hamburger is out of the question for me but they do make a grilled cheese sandwich which should be relatively easy to digest. I lucked out and they grilled my sandwich right where they had recently grilled some onions and that added a very nice hit of flavor to the sandwich. I also got extra cheese which added even more calories and I had a very happy tummy.
Monday night brought more real food and I had Kraft Mac-n-Cheese in the blue box. This meal also went very well and I continued to press forward. Tuesday night brought taco-Tuesday from Del Taco and the three crunchy tacos and a churro was a step too far, causing me to not eat much of anything on Wednesday.
I have found a new taste for tomato soup and there are some very good options out there for me to eat. I do sneak in a couple of club crackers with the soup but I am sure to chew them to a good mash before swallowing. I have lost my taste for cream of mushroom or cream of chicken soup somewhat but it certainly is better than nothing and a few crackers help them out as well.
I have been just having a large glass of orange juice for breakfast, skipping the cream of wheat but may add that in as time goes on as well. I often then supplement all of this with an ensure, jello, pudding, or some ice cream throughout the day. On a good day, I easily exceed 1000 calories of food consumed but bad days are often only a few hundred.
The weight will come and the fatigue will start to go away. Not immediately but I can be patient. I am currently hovering in the upper 130s for weight. According to BMI, I am severely underweight at this point (I would just barely be normal for someone 5' 9"). My current weight goal is to make it to 150 which puts me solidly into the normal weight category with a little bit of margin.
What is the long term plan? I don't know. I should be seeing my surgeon in early January and we can discuss some then. I don't know if I am operable at this point or if surgery could even resolve it. I do know that I need to be stronger before that could even happen either. If I can get to where I am eating one real meal (even a limited meal) a day, that is something I think I could tolerate for quite a while.
I started on 1000 calories per day which is a nice improvement over what I had been taking in. After a couple of days, they then advanced me to 1500 calories/day and that is where I am at now. With 1500 calories/day through TPN, I don't need to consume a huge amount of food to maintain or gain weight now.
As to eating, I am slowly feeling out my boundaries of what I can eat and what I cannot. My near term goal is to do fluids for breakfast and lunch with semi normal food for dinner. My first attempt at this was on Sunday, December 6th.
We had a belated birthday celebration for Stephanie and we got dinner from Five Guys. A hamburger is out of the question for me but they do make a grilled cheese sandwich which should be relatively easy to digest. I lucked out and they grilled my sandwich right where they had recently grilled some onions and that added a very nice hit of flavor to the sandwich. I also got extra cheese which added even more calories and I had a very happy tummy.
Monday night brought more real food and I had Kraft Mac-n-Cheese in the blue box. This meal also went very well and I continued to press forward. Tuesday night brought taco-Tuesday from Del Taco and the three crunchy tacos and a churro was a step too far, causing me to not eat much of anything on Wednesday.
I have found a new taste for tomato soup and there are some very good options out there for me to eat. I do sneak in a couple of club crackers with the soup but I am sure to chew them to a good mash before swallowing. I have lost my taste for cream of mushroom or cream of chicken soup somewhat but it certainly is better than nothing and a few crackers help them out as well.
I have been just having a large glass of orange juice for breakfast, skipping the cream of wheat but may add that in as time goes on as well. I often then supplement all of this with an ensure, jello, pudding, or some ice cream throughout the day. On a good day, I easily exceed 1000 calories of food consumed but bad days are often only a few hundred.
The weight will come and the fatigue will start to go away. Not immediately but I can be patient. I am currently hovering in the upper 130s for weight. According to BMI, I am severely underweight at this point (I would just barely be normal for someone 5' 9"). My current weight goal is to make it to 150 which puts me solidly into the normal weight category with a little bit of margin.
What is the long term plan? I don't know. I should be seeing my surgeon in early January and we can discuss some then. I don't know if I am operable at this point or if surgery could even resolve it. I do know that I need to be stronger before that could even happen either. If I can get to where I am eating one real meal (even a limited meal) a day, that is something I think I could tolerate for quite a while.
Wednesday, December 2, 2015
Home but not out of the woods
I entered the hospital on Friday 11/27 and was on a clear liquid diet until Sunday evening, the 29th. I then did a full liquid diet for three meals without any issues and transitioned to an unrestricted diet on Monday evening. I continued the unrestricted diet through Tuesday without issues and was released Tuesday afternoon.
Unfortunately, things have not continued to be issue free. Tuesday evening dinner made my stomach hurt some and made me concerned that things were not OK. Wednesday lunch caused some very significant stomach cramps and the gurgling in my stomach returned that usually accompanies a bowel obstruction.
I am not out of the woods. I have an appointment with my oncologist tomorrow and will be asking to get back on TPN so that I can get some consistent nutrition back into my body. My body is weak and I can feel it hovering on the edge of a cliff. I am almost always cold and walking up and down the stairs is something I have to really convince myself to do. Once on TPN, I will be going back to a liquid diet with the occasional regular food as I tolerate it. I don't know if this situation can be resolved with surgery or some other intervention but that is the plan for now.
I feel like I am finally hitting the endgame. As most of you know, I have been at this for fourteen years but I have never had a year like this one. I have not been 100% since February and have not even been 50% for much of that period. I always feel exhausted and am always looking forward to the next time I can take a nap or go to sleep for the night.
I fear that I will not return to 100% at any point in the future and would be excited just to be at 50% at this point. I have given up on playing hockey again and fear that skiing is not going to be an option as well. Returning to work is yet another step that I don't know if or when it will occur.
Sorry to be such a downer here but I have always pledged to be honest with everyone as to where I am and how I feel. I am down physically and emotionally but hope to make improvements beyond where I am currently. I know I won't get back to 100% of where I was but hope to improve from where I am now.
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