The road ahead
What’s next?
Rusty and I cried together last night. He’s having some pain in his right abdominal area, and we think it may be due to the melanoma. Our worries are not unfounded. About a month ago, the radiology report observed new, multiple tumors in his liver. Measuring 1 to 2cm each, they were small, but growing.
This is an aspect of our lives we cannot ignore: When living with active disease, every bodily pain, ache and discomfort is judged with heightened sensitivity. At this late stage of our treatment protocol, it is not easy to keep at bay the questions we yet have answers for: Is the drug working? Are the tumors getting bigger?
It has been a while since we let ourselves be emotional about the road ahead. Huddled in the dark, against the lambent flames from the fire-place, I held his hand until he grew still, and fell asleep.
January 18th, 2007 at 2:20 pm
I wish I had some words of wisdom or comforting words for you but what can I say that you haven’t already heard before. Hang in there and I will keep both of you in my prayers.
January 18th, 2007 at 2:26 pm
I just found your blog randomly searching melanoma. I understand what you’re going through. I am a care-giver too. My husband was diagnosed in July. He should be starting the Pfizer anti-CTLA4 trial in 4 weeks. Thanks for sharing with me and the world. I sure hope the drug is working. You two will be in my thoughts.
January 18th, 2007 at 4:47 pm
The Pfizer and Medarex drugs are actually very similar. They are both CTLA4 blockers and in fact, drug response and side effects in both trials are remarkably similar. The only difference is the drug schedule. I believe Pfizer is dosing patients every 3 months. Medarex is every 3 weeks, but overall, the drug volume works out to be roughly the same.
Katrina, there will be symptoms you will need to look out for - fevers, aches, chills, diarrhea, fatigue and above all, dehydration. Anecdotal evidence suggests the more symptoms that occur, the more likely the drug will be effective. If you want to talk more, feel free to e-mail me, Jesse and I will be more than happy to share with you our experience with this drug, or others that we’ve tried.
January 18th, 2007 at 8:47 pm
The night has passed and morning is coming, another day ahead…don’t give up.
January 21st, 2007 at 8:12 am
Hi Yen,
Good to hear from you at my blog. I am glad to see you have settled down well in NY.
I don’t really know what to say, but I hope things would get better soon. I’m sure you are happy to be there for Jesse, to share his pain.
All the best to you.
*hugs*
January 21st, 2007 at 11:40 pm
I too can only offer my support and thoughts/prayers. I am also glad that Jesse has you there to share, comfort and encourage. I want to encourage you as well.
*2 HUGE bear hugs (’cause you said you liked them!)
January 22nd, 2007 at 1:43 am
This bitch ain’t ready to throw his hands up yet guys. Thanks for all the words of encouragement. I’m hanging in there. Derek - hugs right back atcha. WD, don’t really have big arms so you may have to settle for a twinky hug.
February 2nd, 2007 at 12:28 am
[…] This afternoon, we saw our doctor at Memorial Sloan-Kettering to receive our latest scan results. The cancer has spread. It is now in Jesse’s lungs, liver and kidney. The clinical trial has failed us. […]