Well, the last painful spot in my mouth is healing up... just in time to start treatment again tomorrow. Have I mentioned before that I have hair envy? I didn't care about losing my hair, but have found myself admiring everyone else's locks. The eyebrow and eyelash thing is really getting me down as well. I want so badly to look normal without having to pencil on brows. [...]
Jessica Clarke - Journal
Read Entries & Updates
I'm happy to report that I woke up without a rash this morning. I kind of expected to be full of life based on what everyone said about the transfusion. I wouldn't say that was the case. I still kind of dragged out of bed. After I got Cam off to school though, I had the energy to go out and dig old mulch out of the garden for an hour. I stopped myself - only because I've been told to do about half of what I think I can do in an attempt not to overdo it. I couldn't do 5 minutes of gardening last weekend, so this is a huge improvement.[...]
I got my 2 pints this afternoon. As we were driving home, I started itching. We walked through the door and Levi confirmed that my torso is covered in a red rash. I called the doctor and he instructed me to take 2 Benadryl. I guess this is not that concerning because I'm not having any shortness of breath or anything. Of course, the Benadryl in my medicine cabinet expired in Jan of 2009.[...]
You haven't heard from me, because it has been bad, and I'm getting kind of tired of complaining! Friday was awful. Pull the car over on the way home from treatment and hang my head in a ditch bad. The weekend felt like the WORST hangover ever that just wouldn't end. The beginning of this week has been hard. The fatigue is just crazy. I have noodle legs after standing for 15 minutes. [...]
I know this post says its from Jessica but its not. I'm too lazy to log out as her and in as me...
The title to this post is slightly more upbeat and optimistic than I'm really feeling right now. We are about to complete yet another classic day 5 of a treatment week. A day we all look forward to as the end of a horrible week where Jess is on steroids and hooked up to a pump that circulates poison throughout her body 24 hours a day. A day full of tears because it is BY FAR the worst day for her. I spent the afternoon with her at CVHO and I watched her, over the course of 5 hours slowly deteriorate into the shell of what used to be my wife. She will be back in a few days but watching this happen has to be one of the most painful things I have ever had to deal with, ever.[...]
Not much to share today, but for anyone checking in here's the update:
Typical Wed of a treatment week. The wheels are starting to come off. The bad taste and nausea are back. I'm half way through the week, and I've got some new tips from Dr. Unger to help with the really nasty effects of the Friday treatment, so hopefully it will be over before I know it. Then, we can be saying "only one more". [...]
Talk about the Sunday night blues... I've spent the weekend celebrating our good news with friends and family. I am now preparing myself for the two tough weeks ahead. I get it. I should be loving the chemo and praising the pump. It has literally saved my life. Still, my dose is being increased again. I am now receiving more than double the amount of cancer fighting chemical that was in my first dose. The idea is that we need to continue to follow the protocol even though results have been achieved. If we want the same great 5 and 15 year results that patients in the study had, we need to follow the same model that they did. This includes continued "dose adjustment" through the end of the 6 treatments.[...]
As promised... weird images of my insides. For reference, my arms are up in the air in both. The one on the right is from January. The red arrows I've added point out all of the black spots that were cancer. Yes, all of that in the middle of my rib cage. It is pretty scary to look at (for me anyway). The scan on the left was done yesterday. Note the lack of big black spots.[...]
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