New Plan

I was going to say Plan B, but I don't have any idea what letter we are on now.

After a somewhat rough night, but not too terrible, I dragged myself together to see what the cancer center had in store for me today. We met with Dr. F, who was wonderful, thorough, and compassionate as ever. He had just returned from a vacation. I don't know that I could handle a job where I was the first thing you saw when returning from vacation.

No, my big giant head is not compatible with radiation at this time. Radiation causes swelling, Swelling changes the facial geometry. We need to "get ahead of this" first. So new plan. High dose chemo, in 48 hour doses, for a few rounds. Then, reintroduce the radiation along with continuing lower dose chemo. We are no longer talking in terms of weeks, but months. The sore bump in my mouth I have tried to wish away is likely another tumor. They took more tissue from my neck during the first trach adventure for biopsy. That is still pending. Yes, sorry, scary shit.

Because we have gone to the next level, so to speak, the options change. My cocktail will now contain three drugs. One makes your hair fall out. One damages your hearing. One is rough on your kidneys. The trifecta. I know this isn't the first cancer rodeo for some of you, so here is more info if you want it: The three drugs are Docetaxel (Taxotere), Cisplatin (Platinol/platinol-AQ), and Fluorouracil (Adrucil, 5 FU).

At this point Tylenol still makes the pain tolerable. I know the second that six hours is up, though. Not really sure what will happen if it stops being enough. They are already going to maximize my anti-nausea meds for treatment, so I don't know that I could add anything else to make me sick.

Met with Dr. B and discussed options. He recommends a port rather than a pic line. I insisted he ask Dr. A first. We meet the surgeon tomorrow morning who is going to put the port in on Thursday morning.

You don't have to read between the lines to know that I am freaked out right now.

Thank you to Tammy for posting the picture of her husband Kris on Facebook. Seeing his handsome normal face was an inspiration. Thank you to Joel for checking in on me and cheering me on. Thank you to Peggy, Melissa, and Grady for the card, especially with the note. It helps to hear from someone who wrote his own guidebook through Hell. Thank you to Dianne for the inspirational card, and Anne B. too. And Betty. Thank you to Crystal for the amazing pictures from your trip along with the commentary. I will be living vicariously through you many times over through them. Thank you to the amazing ladies in the Alumni Office for my Wolfie. He is my treatment buddy and went with me today. You are so kind to think of me (and to not send an angry hamster.) Thank you to all my wonderful friends who have sent text messages, emails, cards, letters and notes. Thank you to all of our community who have continued to feed us. Thank you for Mary and Natalie for being the first two in the rotation. As always, thank you to Serafina who probably has PTSD reliving this experience to guide me along.

I know from the survivors page that people come through this. I know that treatment is not always horrible for everyone. I know that I have an amazing team of healers prepared to make this a comfortable as possible. I have more loving friends and family than even seem possible. This is not the life I pictured for myself, obviously. I want to be that person posting too many pictures of how great life is a few months from now. I want to be in the audience for the performances, the dressing rooms for the special outfits, the commencements and the joy. You don't have to talk or eat with a fork for those things. Even a big giant head doesn't preclude you...

Go cheerleaders, go!

Love,
Kiara