For some reason, the Saturday before last I got really tired during the day and had to lay down for a few hours. Then on Sunday the same thing happened. By the week and still until today, I lay in bed 20 hours a day. I feel completely exhausted and week and yet cannot really sleep. Even if I do fall asleep I wake up about every hour coughing up mucus. The mucus has gotten better but my esophagus is more swollen shut and it causes me to gag on the mucus.
I saw my radiation oncologist this week and did blood work and an x-ray but nothing came out of it. So, next week I see my medical oncologist about it, because he used to be an internist (i.e. practiced internal medicine) and may be able to better diagnose the problem. Any other internist would have been weeks to be able to see.
It has been frustrating, but what has been most frustrating is the not being able to drink. I am at the point where I have no desire to eat, but I crave sweet drinks. Even ice water would bring me incredible happiness. (Read Skeletons of the Zahara to understand how I feel). I would love a slurpee, sprite, or cold coke. And last night I dreamt I made my own root beer and it was delicious.
But so as not to be depressing, last night I came up with a great solution. I just took a glass of juice, and kept taking swigs and spitting it out. Its not quite as good as actually swallowing, but you get all the flavor so I really enjoyed it and will probably keep doing it today.
Also, yesterday I got a nice care package from the Seattle U track team. It was really flattering to be remembered and the coach talked with the Women's Volleyball coach and they are thinking of having a game called "Dig for the Cure" and I would be the opening speaker. That really made my day to hear that. Thanks for all your support and comments lately. I have needed them and enjoy reading them.
Steve
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26 comments:
T.
I have a meeting down in phx Monday so I will be home this weekend and will make my way south to see you on sat. after the manwar's game.
I can't wait to see you!
I wonder if I could apply the same technique to losing weight, put the food in, chew it around and then spitting it out. Maybe you could write a diet book in your spare time touting the benefits of such a plan.
I know it has to be frustrating having one obstacle after another. I just have to think you are still moving forward, no matter how difficult the road. And each move forward is closer to the end of this era and the beginning to the rest of your life. As John Stewart said, keep on plugging the old 9 to 5.
Steve,
I am very sorry to hear things are not progressing as you (and all of us) would like. I hope that your doctor's appointment this coming week provides some insight and good news.
The Lybarger house has been awaiting the results of your May 14th screening and praying for your healing. I am unsure what exactly to say, as I have never been presented with anything as challenging as your fight with cancer. You are a very brave man.
Hopefully you find comfort in all of the people who continually express their love for you.
Go hawks,
Kevin
I have been wondering how you are going. I am sorry that you are having difficulties at this time. I hope that your radiation oncologist will be able to help you. Even though you are not swallowing the juice you may still be getting a little bit more benefit from it than just enjoying the taste. Hope you will soon be able to have a large slurpee and be able to enjoy the chill from it all the way down. Prayers still being said for you.
Hi Steve,
I am glad to hear from you again. The time that you have been spending in bed is probably what you need for healing. It is a shame that you are having trouble drinking. I hope that that will soon pass. I was getting thirsty just reading you blog. It reminded me of how thirsty our Lord was as He hung from the Cross. Hang in there Steve. Our love and prayers are with you. I will talk to you again soon.
Love,
Aunt Diane
Steve:
The blanket for Makenna is beautiful and unbelievably soft. Thank you so much. Also, the "dig for the cure" sounds like a cool event. However, I wonder if Jen might be a little hesitant to let you go up there and see the girls in those tight shorts, not that I have ever noticed them, but I've heard people say how inappropriate they are. I couldn't agree more.
Danny
I am curious. Did the doctors decide to do an MRI when they found out you were still supporting McCain?
Gotta tell you, when I heard the results I could only sing, "Sing to God a brand new canticle."
Next week will be better, I know.
Hey Moke, Sprite...No squirt??
Great idea having you as a guest speaker. You have the opportunity to inspire others. If anyone believes Danny isn't looking at the girl's tight shorts they don't know Danny. I met Billy's friend Kate this week. My grandsons sure pick winners in the girlfriend/wife catagories as did my grand daughters.
Hope Rye and the brophy lacrosse team do well today.
Hang in there Moke. My love to Jen.
Steven -
I wonder if you could develope a career as a Koolade taster ("Sugary and syrupy yet sweet"). The real pros - the coffee and wine tasters - don't swallow either. I'd like to be there for your first Slurpie. Glad to hear yesterday's reports that you're feeling a bit better. Love, Greg
Moke -- my thoughts are with you. heard a frightening rumor this morning that mccain would consider Scalia for a VP position. yikes. and i thought cheney was bad. anyway, i miss you and can't wait for this to be over. my offer still stands re Berto's.
I downloaded some really good new music over the weekend. I need to get it down to you to augment your iPod playlists. If there was any doubt, this stuff will put me over the top. Midlake, Dirty on Purpose, the Fruit Bats, Delta Spirit and Rogue Wave.
Hope the 'Roids are helping.
Steven,
I love reading the comments our family posts on this...everything from politics to diet advice to wine tasting to girls in tiny volleyball shorts!! Nice.
That is great that you found a way to enjoy drinks without actually enjoying them...let me know when you find a way to pay the bills without actually working...I am working hard on that one as we speak (although thanks to mom and dad there are not that many bills). Getting pretty good at Bubble Burst on the cell phone...but, on a more serious note, I continue to send you positive thoughts everyday and hope this exhaustion is a sign of your body working hard to make sure you are healthy and that soon enough it will be over.
So cool about being a guest speaker...we all have a lot to learn from you. XOXOXOXOXOXOXO
Thought I'd follow up on a post Bronco lacrosse report. STATE DIVISION 1 CHAMPS!!!!!!! It was a close game, 8 to 9, and the little guy was so glad to not have to be defending the net for those last few seconds of suspense.
As far as how everything is going with Steven it is two steps forward & one step back. Although, this step back seems like a giant one.
Ryan said if he had known you were going to have so much time to catch up on all your sleep he wouldn't have tiptoed around your room so much trying not to wake you up.
Hey Steve,
Just wanted to send lots of hugs and kisses your way, although I know that you have plenty! I would also like to note that while I am a very understanding wife, I am not thrilled about my husband's post about young girls in tight shorts. Boy are those days gone for this mommy and he is clearly struggling with that notion.
XOXOXOXO,
Mary
Hey Babe,
I just wanted to drop you a short one to let you know that not a day goes by that someone doesn't ask about you, or tell me they are praying for you. One of the teachers at Brophy has young boys at Ss. Simon and Jude. She said the other night at dinner her youngest said "Mom, we haven't prayed for Ryan Manos' brother in a long time." The faculty at Brophy continues to pray for you every Thursday morning when we all meet in the chapel. But......I know you will be most excited with the news that Colin Blattner, in that most irritating voice, came in to my office to inquire as to how you were doing. Very nice, nonetheless, he's a tool!
Brophy plays baseball tonight and has to win to stay in the playoff run. Things are not looking to promising.
I love you so. Hug to Ms. Hawkins.....
Hey TT, I am here posting while watching the Suns lose because Shaq can't make a free-throw. I was just dropping in to say that I lve you and am thinking about you.
Good luck today...we will be hoping for good news. We love you so much!!
MokeMan -
I sent an email to Frankie Lesselyong who may become a father today (his wife is going to be induced this morning). He shot back an email saying how excited he was, and out of the blue said tell Scooby I said hi! Blast from the past! Makes me picture you with a gooky sticking out or your gob. I wonder if even Jen has heard that one.
Easy for me to say, Moke, but keep up the courage. You continue to be an example to us all. Love you, nephew. Greg
Hey T, we are watching a movie about running in class, and I thought that you would like it. It won an academy award in 1981 for best picture. It is called "Chariots of Fire".
I love you.
When did Shaq join the Suns? I feel like I should have known that but you know how we are up here in the north. We like to pretend we are above things like watching sports because we are too busy hiking or planting trees.
I sure do miss you brother. I was going to start work on the 12th but if you would be down, I could start a week later and come hang out down there. Let me know what you think.
I love you.
Thinking of you Steve. Once finals are done, I would like to come down and visit.
Danny
Moke: Dan, Wackman and I (and anyone else who'd like to take the final seat in the spifty Accord) would like to visit this Sunday -- we'd like to bring the academy nominated "What about Bob". Sound okay?
In the meantime, keep fighting the good fight, and know that I wish I could jump in and take a few rounds for you. I respect you like no other, Steve.
like bill said, we would all love to take a couple blows for you and lighten the load. just know that i am thinking very positive thoughts all the time. and i just know that very good things are going to happen. i love you so much.
hey moke,
Thought about driving down to Tucson today, but your dad said you had an appointment . I think I'll bum a ride from Billy if he still plans on going. We could have a good pinochle game (that is if Danny ever let someone else get the bid.) I can't believe Rye's comment on "Chariots Of Fire". That was poppie's favorite movie and he loved the music. I saw Makenna today. What a doll . She was in her swing with the blanket you and Jen gave her.
Do you think you and Jen will be able to join us in Ssndy Eggo this summer? July 26 until Aug. 2. I'll do the cooking (along with Sarah).
Love you, Moke.
Pro-tip don't ever forget your blogger password...it takes some soul searching to find.
Steve, I am sorry things are so slow to recover. Man I have to say that the swishing the drink in the mouth was a genius idea...maybe you can share that with some others who are going through the same symptoms. I was thinking of wearing some sort of Red Hawk wrist band on all my runs for your honor. I can only do it 3 times a week because the darn thing stinks after an hour run. I have an idea that I will buy some more...this way since I run a lot of miles you can steal some of mine, till your ready to log your own! I got and easy 8 or 9 tonight...Rest up!
-Carlos
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