I have a private room! It's fabulous! Not having to worry if I will have a roommate through the worst of the treatment is such an enormous weight off my mind. I am so extremely thankful for this I cannot even properly say how much. Not only will I be able to completely control the environment during the worst of the side effects (no sound, no light), but it also means we can bring baby Kai for a visit if I'm well enough (the pediatrician advised not to if I have roommates). We'll see what happens, but I'm hopeful he can come for a visit this time. Plus I need to show him off to the nurses and doctors who see his pictures every day (last time they were taped to my bed-side table, this time they are taped all across the wall in front of my bed). Round two is off to a great start! Jeff joked that I was cashing in my rewards points from my previous seven-night stay to upgrade to the private suite.
I feel good being back in the Clinical Center. The nurses and other people on the unit were all so welcoming. It felt like we were returning to visit old friends. Everyone here is so amazingly wonderful, which really goes a long way in making the treatment more tolerable. I saw Dr. Hong (he is the Fellow on call tonight) earlier and he said they were going to push even harder this time because I'll have more time to recover before I have to do it again. Now, I only have to do this again if the scan shows that it's working, so after he said that, I said, "That's right! We'll be doing it again because it's working!" And Dr. Hong said that the white blood cell activity they saw in my blood work from round one (in response to the IL-2) looked very promising and he is hopeful that it's working. I told him that my pancreas pain is gone and he said that is also a very good sign. Fingers crossed! I'm ready to push it however far they want to this time. I trust they will stop when it's necessary. I can take it. I am ready. I will be cancer free soon, I just know it.
Not too much has happened so far. We got here around 6:00pm, went to Admissions, and then came up to the unit. We unpacked and set up the room. Christine (the nurse with the baby one week older than Kai) was my nurse for 10 minutes - it was great to see her because she works part time and won't be back until Thursday (and who knows what state I'll be in by then). She told me that Caitlin, the charge nurse, really pushed for me to have a private room. I really appreciate that. After Christine left, Frank came in to take my vital signs, including weight and height. While I won't say what those were exactly, I will say my weight was the same as it was when I started round one, which is good because it means I lost all of the almost 30 pounds of fluid from last time. After that Jeff and I ate dinner (he went out and got us something because the cafeteria is closed since it's a holiday). When we got back to the room, my nurse for tonight, Danielle, came in to check my PICC line, take blood, and set up the pre-medications I'll start getting at 10:00pm. At 10:00pm they will hook me up to the IV, give me something to help me sleep, and then we begin the dosing at 7:00am (so I have to keep this short because it is 9:55pm now). I am all reved up and ready to begin. While I am sad to be away from baby Kai, I am ready to be one step closer to being cured. I just know that this is working. I think the universe decided I had some lessons to learn and gave me the gift of this journey through which to learn them. Hopefully, I am recognizing these lessons and will lead a much richer life because of them.
Today I am thankful for all of the wonderful people at the Clinical Center; my mom who is lovingly caring for baby Kai; all of the delicious food from our MMG family; my fabulous private room; the amendment to the spending-cut bill that spared NIH the proposed $1billion+ in budget cuts (I am thankful for this with my life); my amazing family and friends; and, as always, my absolutely wonderful husband Jeff and perfect baby Kai. Sleep well, little one, and know that I will be dreaming of your sweet face every night until I see you again.
Jamie, it's good to hear the positive flowing so freely. Especially since you went through so much the first time and are READY for round 2. Your Mom sent pix of you, Jeff, and Kai. You look like a happy family. Keep that in focus. A private room. This praying is helping big time. You get some rest and win round two. God bless you and yours!
ReplyDeleteNKH
Jamie, I'm thinking of you and praying all is going well. As they say, Hunker down and Pray for daylight! :)
ReplyDeleteHope to see you during your next break from treatment.
Sharron D
Here's hoping you had a peaceful, restful night and that this round of treatment is effective with fewer side effects!
ReplyDeleteI'm so thankful that you got a private room. I know it was weighing heavily on your mind. Another blessing on this difficult journey. You are in my heart every minute. Kai really is a perfect baby. He is so sweet. You have done such a wonderful job of making him feel loved and secure. He listened with rapt attention when we "read" the book you recorded for him. Wrap yourself in love tonight. You are so loved.
ReplyDeleteJamie-
ReplyDeleteHope you are doing well, stay strong. So excited that you got a private room. Now you can rest a little easier and have baby Kai come visit you. Take care, love you!
-Donna
Hang in there Jame, and continue to stay strong. You are amazing! Keep up the fight! Love you and sending hugs. Love, dude.
ReplyDeletethink how many moms don't read to their kids when they are there. Then think about how you are reading to Kai when you are not there. Then pat yourself on the back--if it doesn't hurt too much! Always knew you are "knitworthy!
ReplyDeleteA private room!!! Awesome! Everything is working in your favor! Thinking of ya, I know you're fighting a good fight! Sending prayers your way ♥
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