I truly, truly wish I had some good news to report. I’m so tired of being the sad sack, the fun suck, the wet blanket. But I have nothing. Instead, I have cold, hard reality. Maggie has been suffering from increased pain over the last few days. We were hoping that it was a phase she was going through. But it keeps getting worse. Her nausea has increased substantially so that she’s vomiting many times per day. Food staying down has become a real problem. And, as if things aren’t challenging enough, she’s caught a cold.
Today, after a couple days of fighting the pain with boluses, she turned up her pain pump substantially. She’s now on 25 micrograms per hour of fentanyl, twice what it had been, and it’s not doing a good job of controlling the pain. Her fever has come on and off throughout the day. Is it because of a cold? Who knows? But, hey, at least we can depend on the nausea. It has been fairly constant.
Tomorrow is her next treatment. Afterwards she’ll fly home to me care of Daniel Castillo. Daniel was very kind to donate his Southwest award flight to us. Thank you, Daniel, for your kind gift. I know you said it’s no big deal but to us it means a lot.
For next week, rumor has it that Angel Flight is going to find us flights. We don’t have any details at this point but I’m hopeful that they’ll pull through for us. A representative told us that they are trying to cover our Tuesday morning, Thursday morning and Friday afternoon flight. That just leaves her trip back to Austin on Tuesday evening. What a fantastic gift.
A minute doesn’t go by that I don’t think about the efficacy of this new treatment. Sadly, there’s no evidence or guarantee that any of this effort will be worth our time. As a Phase I trial, the hospital is only really concerned with the drug’s toxicity. In other words, the trial Maggie’s on is specifically to see what dose is poisonous. There are about 40 people in this trial which are divided into groups of five (I think.) Each subsequent group is given an increased dose. She’s the last of the second group and, thus, will receive the next-to-the-lowest dosage. We’ve made it past the first treatment so it’s apparently better tolerated than the Erbitux. Hopefully, it’ll be as effective. We could use a good base hit right now.
I’m really struggling to find any good news right now about our situation. We are in a not-so-good place right now. Fortunately, there’s a little ray of sunshine that makes me smile. A friend of ours, Karen, who has also been diagnosed with Stage IV colon cancer, has been given what seems like a miracle. After her treatment with Erbitux and radio frequency ablation, her tumors have shrunk to the point where she’s eligible for a possibly curative surgery. Absolutely amazing. We could not be happier for her and her husband Francis. For their success, we are thankful. Congrats, Karen and Francis!
Thank God for small blessings … like friends with free flights and Angel Flight! I’ll take care of that Tuesday evening flight … and anything else I can do that could help … however small.
Constant prayers and all my love for you and for Maggie.
Hi you guys – I’ve been reading this blog for awhile. You don’t know me but I know Adam (he has a blog that you have posted on). Please keep on trucking – the two of you and your bond through this mess are so inspiring. I can’t imagine how hard this must be, but just know that you’ve got a heckuva lot of positive energy coming at you from up here in Canada. God bless and may you walk from strength to strength.
Love and light, Mel
Thank you for your thoughts. And I hope Adam’s recovery is going well and the surgery was a success for him, too.
Hi – We have a Southwest Rapid Rewards ticket too that I’d like to give – for Maggie or for Chris to go with Maggie.
I’m praying that you have some good news to report soon.
Sending prayers your way. We will likely have a Rapid Rewards ticket soon, as Scott has been traveling a lot for work. Once we have it, it’s yours!
Hi guys-
Tom and the PC gang here. We’re all keeping up with Maggie, and thinking of the both of you.
I have a SW roundtrip credit I’d happily donate to you two. Please contact me tom@planetcancer.org.
On behalf of my personal Real Estate biz which donates part of it’s profits to cancer research, I would like to give $50 toward a ticket since I do not have a SW ticket personally to give. I know it’s not much, but I hope it can help, and once I get some more closings, I would be honored to donate more.
Chris, I know it’s not much, but we can give $50 too. Just let me know when you need it. Carson can do without his daily after school Hershey’s kisses for a couple of months! (Just kidding! nobody will go without anything!) Carson blows kisses (real ones) to you guys all the time and we send you thoughts, prayers and love constantly. You have a large contingent of Collin College that is praying for you (including the President!). I’ll ask around to see if anyone up here has any SW vouchers.
When I was pregnant, I had something called “Preggie Pops” that helped with the nausea. You might try those. You can find them on the internet. They are lollipops and hard candies that are made with ginger and other anti-emetics.
Dear Maggie and Chris,
Pat and I would like to contribute a little something toward yout trips to Houston. Our hearts are with you, and we stand in awe of the love and bravery that leaps off the pages of your blog. We wish you all the best.
I will ask Earl to give us your mailing address. We hope it will help ease at least a little of your burden.
I check your blog daily and Maggie is always in my thoughts and prayers. I would like to contribute $100 toward an airline ticket. Maggie and you have so inspired me!!!! I have your address and the check is in the mail. Best.
Wow that is good news about Karen! Hopefully, Maggie’s body will respond the same way to the Erbitux AND the amount she is being given.
Unfortunately, Maggie has already tried Erbitux (and its cousin, Vectibix) without such good results. That ship has sailed. The new trial drug she is on now is a similar style of drug, called targeted agent, but it works in a slightly different way. Targeted agents are the future of cancer treatment. Let’s hope we can find a little future right now.
sedning love and positive thoughts your way.