I was supposed to start radiation and chemotherapy today but only started the radiation. Under the guise of waiting for my port to be put in, the medical oncologist's office decided to wait until tomorrow to start the chemo. In the morning I will have the port put in and then have chemo and radiation in the afternoon.
The problem was I am getting two types of chemo: cisplatin and 5-FU. The first is a typical chemo drug that will only be delivered three times at three week intervals. The second is given through the port 24 hours a day for four days straight. So, we were going to wait on the 5-FU, starting tomorrow, and start the cisplatin today. But, the office thought we might as well just start both at the same time, tomorrow. I countered with what I thought was a better argument, saying that really we might as well just start the cisplatin today and the 5-FU tomorrow, as originally planned. That led to the real truth that they didn't have a room available to do the chemo today. Plus, they probably weren't willing to do me too many favors because I left several blunt messages in the morning asking why we weren't starting today.
While I was not nervous for the radiation, I did panic a little when they put the radiation mask on me. The reason is that it made me really claustrophobic. The mask goes from mid-peck to over your head and is made out of a mesh material that is as hard as a cast. They lay you down on the TOMO machine (my type of radiation machine) and pin the mask to the bed you are laying on. The problem is that when they peg the mask down, there is an incredible pressure on your face including your nose and mouth. This makes it very difficult to breath and it also immobilizes you. With the mask being over your face I got quite claustrophobic and we had to have a few takes and an eventual tranquilizing shot before we were successful in doing the treatment! The treatment itself involves a 20 minute CT scan (every time) to map out the radiation and to make sure the radiation isn't hitting dangerous areas things like you spine, and then just 5 minutes of being radiated.
Hopefully things are better in the future, and I have some medication to take beforehand to keep me calm. There are no signs of some of the bad side effects yet. At some point my mouth should get really rough, but I am feeling no side effects now. I will update after chemo and radiation tomorrow; it will be a bigger test.
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18 comments:
Steve - thank you for all of the info. There are quite a few of us that think about you every day and are looking forward to the updates! This will also keep me from bugging your family frequently!
Steven -
Thank you for keeping us updated. All I can say is that I have never been more proud to be a part of the "Seattle University Redhawks Cross-Country Cavalry" than I am today. Of course thinking about being a part of that cavalry reminded me of the time when you had just run the 10k of your life down at the University of Oregon. You were feeling so good about yourself you decided you needed a nice hot bath, only to have that nice hot bath interrupted by a bucket of mud. I still get tears remembering your reaction but I will spare those details in case children are reading.
Remember you are always in my thoughts and don’t forget I need a few more nights hanging out on a hot summer Arizona stoop. I will be reading.
Steven, I love you so much.
I think of you every day, and even though I am slightly out of praying practice, I am doing my best. Even though I am no expert in reiki, I am sending possitive energy your way! Thoughts and memories, smiles and laughs. I was looking though some old photos the other day (as I do often) and there were some pictures of us on the houseboat in the Ozarks (oh the good ole days!). Most of my memories of you consist of Christmas trees, house boats, water skies and palm trees. Vacation destinations, life jackets, inner tubes and climbing Grandma and Grandpa's backyard mountain of a hill. I miss you terribly! Like I said, I am thinking of you. You are amazing. I look forward to reading more!!!!
I love you!
xoxoxoxoxoxo
Your cousin, Laura
Steven,
You are so incredibly brave. Danny and I think about you constantly and are so appreciative that you are updating this blog for all of us who love and care for you deeply. We love you so!
Hi Steve,
Thanks so much for keeping us posted on how you are doing. I love you very much and think about, and pray for you every day. I hope that 2008 is a great year for you. I am looking forward to further updates. You are such a wonderful young man. I know that you will get through this. You have lots of family and friends pulling for you. I hope to be able to see you in the not too distant future. It has been much too long since I have been to Arizona. God bless and keep you.
Aunt Diane
T - I'm determined to figure this whole blog posting thing out since your Aunt Diane did it. Hope this works.
Hi Steven,
I think of you, Jen, and the entire Manos family often. I know your strength, as well as that of your family and friends, will carry you through this.
Love,
Mary G.
Hi Steve,
I am Mary Gilbaugh's sister, and I am amazed at your strength and wish you strength and courage through the process.
As an avid runner and the coach of a cross country team, I have taken your quote below and shared it with my team. Interval days are tough, but what you are doing now is more strength than any athlete could ever have in any sport.
"You have to remember that I was a member of the Seattle University Redhawks Cross-Country Cavalry and we did battle almost every Tuesday, Thursday, and Saturday. The endurance, courage, fearlessness, dedication, and will to fight that I developed as a runner are tools that I will use to be a success in this battle also."
Steven -
"Boring"??? Hell No! I'm so glad you're doing this and in as much detail as you are. Your journal is amazing and funny (didn't get the Oregon Trail thing, though, bnbut I'll have Ted and Linds explain it to me later).
Keep the info coming, Mokey. We're all so interested and anxious to hear from you. Love you so. Greg
hi steven,
my mom sent us all our blog address, and i know my whole family has you in our thought....mark in germany, megan in l.a., and me in seattle. we'll send all our positive energy to tucson.
your optimism and strength are inspiring! how did you get to be such a misery-free graduate student? they're few and far between as i'm sure you know.
take care!
lauren grant
Steven,
I wanted to send you a quick message to let you know that you have so many people praying for you right now. Your mom is a very special lady and she loves you so much. I work with her and see the love she has for you everytime she speaks of you. May God wrap his loving arms around you and give you the healing, peace, comfort, faith and hope needed to go through all of this.
Sweet Steve, You have no idea the inspiration you have created in so many of us. From the time you were born, we were in awe over your sweet gentle nature, and your constant kindness. You've run some hard races and did it with such style. Another race, a tad harder, sweetie, but one I know you can win. I love you so very much, and there will come a day when I can run with you in Mission for more than 30 feet!!!
Steven,
I'm one of the folks that have been praying for you daily - your "blog" really "tells it like it is" - I commend you for your honesty and openess! It is quite the gift you are giving your family and friends and may you find the love and support of so many a gift to you. You appear to have tough road ahead of you - but no doubt your strenth, support, prayers and attitude will carry you every step of the way. Have no doubt that you will get through this one step at a time Steven - my prayers continue.
Sincerely,Marilyn Haas
Hi Hollywood, I just want you to know that Ruth and I are praying for you daily. Our entire Church is praying for you, and each person has put you on their prayer list. I will keep checking this site, to check on your progress. Contact me if you need to talk. Love ya Uncle Pat.
Steven, this is the “long arm” of family reaching out to extend my prayers and support for your complete recovery from all of this. I’ve not had the good fortune of ever meeting you, but it’s clear from reading your blog that your strengths are many and that you will come through this with flying colors. I really must applaud you for your knowledge of exactly what’s going on with your cancer and the treatment. That knowledge and understanding will no doubt serve you well in the days and weeks to come. I’ll look forward to checking in from time to time to read about your progress and what I’m sure will be a very bright light at the end of this tunnel!!
God bless you and keep you safe!!
Sharon Collins
(your Mom’s cousin)
Hey Steve,
I also work with your mom and was given your blog addy so thought I'd drop by. Your journal for the journey is a great idea for sharing with those who care. Count me among them. I'm keeping you in prayer and look forward to reading how you will overcome.
Abundant blessings,
Jenny
Steve,
We appreciate your time and talent in keeping everyone informed..great idea.
We pray for you and your docs and nurses, family and friends..all who are helping you in this journey.
Attitude is half of any battle....and yours is the best. Keep up the good work...we all will keep up the prayers.
Willie and his wife Jessica,in San francisco, Charlie and Austin, in Denver, are praying for you, also, and send their love.
Hugs,
L'Jeane and Greg fairbourn
Hi Steve,
It's your aunt again, signing in to say yet again that I love you and am praying my heart you for you. I know that you are safe in God's hands. Keep your faith, and hope. I know that you are a courageous fighter. There are many, many on your team. Thanks for getting me to blog. I would never have done it without you. I will write again very soon. Take care and God bless you.
Love,
Aunt Diane
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