I’m finishing up my 5th dose of Cytoxan as I type. 43.2 mL to go. Tomorrow morning at 6a I will receive my last dose. Then around 9:30a I will receive Adriamycin and Vincristine. That my friends will thankfully just about wrap up Cycle 1A. I’ll receive another dose of Vincristine on 6/14 as the final part of my Cycle 1A hyper-CVAD treatment.
I Feel Chemoey
During rounds this morning the doctor asked me how I felt. I said I felt Chemoey and oddly enough she asked me to explain more. Now you would think a lady who is spending all of her 20’s to concentrate in Hematology/Oncology would have learned somewhere along the way what feeling Chemoey means, but alas I had to explain it to her.
My current state of feeling chemoey is mostly related to the battle going on in my body between the Chemo (downers) and the Steroids (uppers). My body wants to sleep for a long time but my mind is racing like a jack russell terrier. My body says “Rob, let’s lay down”, but my mind says “Rob, let’s run some laps while doing jumping jacks and cart wheels.” It’s not the worst thing in the world (which, if you don’t know is Eric Knight’s face) but it’s not the best thing either (Which is Jesus, closely followed by my wife). The chemo causes me to be nauseous on an empty stomach but the steroids make me want to eat all the time. That actually balances itself out pretty well, as I just jam some crackers in my mouth to shut up the steroids and calm down the chemo. Overall, I just feel weird. You know doc, Chemoey.
My Communion Habits
Our Church does communion on a weekly basis. Communion is served on tables throughout the church. The trays contain 2 containers stacked on top of eachother. The bottom container holds the bread and the top container holds the juice (This info is very important as some people only grab the top container, ahem Pam Culross). Anywho, when I get up to get communion, I’m also on the lookout for full cups of juice. I can’t say exactly why I prefer full cups, but my OCD preference is two cups that are nearly full and of identical amounts. This challenge is a bit harder than it sounds and there is a time crunch as well. You have to be close enough to evaluate the communion cups, but you also have to be quick because there are people behind you. Oh, and I always try to grab communion cups so that I don’t leave an odd number in a row. That’s a lot to take in. For quite some time now, it seems like the communion team prefers half full cups. It’s a bit disappointing to get a full serving of body, but only a half serving of blood. I’m not sure why they are only filled half way. Maybe it’s so you don’t spill or maybe an IUH exec is in charge of communion.
So what the heck does that have to do with cancer? Not a whole lot really. The only reason I thought of it is because of the mouth rinse I have to use. When I was here before I would get a whole bottle of Peridex to use at my leisure. I have to use Peridex because it kills bacteria in my mouth and regular toothpaste could cause abrasions where bacteria could collect. These days at Simon Cancer you don’t get a bottle of Peridex all to yourself. You get a small container 3 times a day that looks like, well a large communion cup. Imagine my surprise when I opened my communion cup of Peridex and it was only half full. Yep, there’s an IUH exec somewhere out there in charge of mouth rinse and communion.
Clocks of Assurance
If you Read Rob the last time around, you might remember Clocks of Assurance. This was during the time of IUH’s Look of Assurance program. Clocks of Assurance was my own personal endeavor because some of the clocks at Simon Cancer were wrong, and one of the wrong ones was in my room. Believe it or not, but it took the persistence of a coworker who had a contact in maintenance to get the clock corrected (Thanks Jen-Sim!)
So this time around I’ve paid a bit of attention to the clocks. We didn’t start off too great, as the consultation room they put me in after they told me I had relapsed was not correct. The good news is the clock in my room is correct. So our Clocks of Assurance program is 50% effective so far. Batting .500 in baseball is pretty good, but if you are a condom manufacturer a 50% defect rate is not that great.
For a Friend
For Another Friend
While it is possible to donate stem cells to yourself, it is preferable in my circumstance to have someone else’s stem cells. You may remember that another person’s stem cells will attack my cells and a certain amount of GVHD is good. If they used my own stem cells, I would not experience GVHD and if I don’t experience GVHD then any leftover Leukemia cells might stick around (bad bad bad). Interestingly enough, the only 100% guarantee of a stem cell match (aside from your own) is if you have an identical twin. However, they would prefer not to use your identical twin’s stem cells for the exact same reason they don’t want to use your own. You will not get GVHD if you use the stem cells of your identical twin.
Speaking of Consult Rooms
I really wish I had gotten a picture of this. While sitting in the consult room (so Lindsey and I could have some privacy as we absorbed this bitch of a diagnosis), I observed a telephone. I didn’t really think much of it, because it would be pretty common for someone to be in that room and need to make or receive a call. However, I also noticed a piece of paper taped to the wall behind the phone that read “This phone is used for Dr. Guise’s patients. Please let all calls go to voicemail.” Excuse me? The phone in the consultation room is one that patients call to leave a voicemail for a doctor? That’s crazy! The phone didn’t ring while we were there, but surely Dr. Guise and his patients deserve a better location for their phone calls. I wonder what kind of HIPAA implications there would be if someone picked it up and pretended to be Dr. Guise’s secretary?
Thank you to everyone who has prayed, sent a message, posted on facebook, shared a status, liked a picture, liked a caringbridge post, commented on a post, etc. Your support and knowing you are out there mean the world to me. I will be sure to acknowledge all comments and guest book entries by clicking the caringbridge button so you know I read them. Also, if you click the caringbridge button (little heart with some waves coming out of the top) I can see your name and know you read the post. It’s a small thing, but it’s nice to know people are out there.
A Duck Dynasty Prayer
Now that I’m 2.5 years wiser since my last stint with CaringBridge, I realize that this could be a sponsored space. I don’t receive any royalties from Duck Dynasty, and like I said yesterday, I haven’t watched it in quite some time. I’d be happy to rename my end of post prayer for the right sponsorship package. Perhaps sometime in the future this will be the Proctor and Gamble Prayer or perhaps the Prudential Prayer or even the Pagano Prayer. Are you reading this Chuck?
Father God, I’m tired and I’m wired. I don’t know which way to go. I know you hold me in your arms, and I just want to cuddle up and sleep. Daddy, please be with me. Please help me to keep a positive attitude day in and day out. Please do not let me dwell on my circumstances, but instead help me dwell on my vision. Your will be done, but I ask in your name for healing. I ask to be rid of this cancer. I ask for complete remission. I ask for no more relapses. I ask for a long life serving you. All these things I ask in your name. And I thank you for another day.