The Influenza de Maggie has taken it’s logical next step – I’m now sick as a dog.* So, while Maggie and I were hanging out last night instead of sleeping, she shared with me more details of her visit with Dr. Loukas on Tuesday morning.
* You have to wonder, really, where are all these dogs that have a cough, runny nose, and fever with body aches?
(All this is discussion with Dr. Loukas was between him and Maggie. I was in class, per usual so I’m giving it to you second hand, adding flare where necessary for readability and effect.)
Dr. Loukas was very firm with Maggie during this visit – she’s not going to be cured. He feels that Dr. Curly is being overly optimistic if not even a bit irresponsible by continuing to press the cure button. Sure, he wants to avoid smashing hopes but the reality is that we need to re-focus our hope. Our last real chance was our long-shot, our all-in – switching to FOLFOX. We did, and since the tumors didn’t make the miraculous disappearance we were hoping for, we are now playing the time game again – the “how long can we stay at the table” game.
He said that we’ve got to be very careful, as we’ve needed to be from the beginning, to choose our next steps wisely. We just don’t have that many different cards to play. We’ve already played one (Xeloda) and now we’re playing card number two (FOLFOX). Did I mention that it’s a very small deck?
So, for that reason he’s going to cut back her treatments to once every three weeks to slow down the toxic buildup from FOLFOX. Once maximum toxicity is hit, we have to move to another treatment, one certain to be less effective. The longer we can prevent that buildup, the longer we have until we are forced to play another card.
Maggie is frustrated and has lost all love for the Wizards at MDAnderson. The required four day visits, throwing up, bad arms stick and driving to Houston has given us nothing but heartburn and false hopes. They’ve reached the end of their usefulness. We’ll likely not be returning. Their purpose was to confirm her diagnosis and Dr. Loukas’ approach, which they’ve done. Now they are just being a bother.
I’ll now take my place beside her in bed, alternating sweating and shivering, and hopefully get some much-needed sleep. Roommate Martha made some wonderful chicken soup for us last night. Everyone knows that stuff is magic. Maggie and I are ready for it to work.
Please tell Maggie to hang in there! I have been reading your blog for awhile, and was hoping and praying that they could do surgery. I am pretty much in the same boat with you, so tired of being told no surgery, I have been thru the same ringer with Mayo that you have with MD Anderson. So tired of being stomped on. There is always hope, hang in there!
Okay WTF?! Yes, Dr. Loukas is a doctor and all, but what gives him the right to go and smash the faith that all of us have? I think docs in general give the worst case scenario to protect their own asses, so I’m pretty sure if you find an optimistic one that is a good thing. Negativity doesn’t help anyone in any situation. Of course do the chemo and all, but let’s not give in to Dr. L’s neg-go-tivo. How do all these people in all situations beat the odds and become medical miracles? It’s belief and not accepting any other outcome. I’m sounding off and I’m pissed, my apologies. I’d tell you to find a new onco if it were possible. I’m not accepting his “no cure” BS, and neither should anyone else. Maggie you are healing and being cured at this very moment. Ok, now why didn’t Chris get a flu shot? Well both of you feel better soon. Much Love!
Well, you know what they say “Misery loves company”, and Maggie you now have company. Cling to each other and weather this latest kick. Keep that positive outlook, and tie a knot in the end of that rope and hang on and more people than you will ever know are holding you up from underneath. GOD WORKS MIRACLES,and don’t either of you forget it. Eat that good chicken soup, and feel better soon. Love and prayers.
Just to clarify. We are still planning on sending MD Anderson results from scans done here and if Dr. Curley thinks I am ready for the surgery it will be greatly considered. That being said, I’m sick of going up there and spending 4 days going through uncomfortable tests then just getting a lot of disappointment to take home with me. So, Dr. Loukas is going to send MDA the results of my next scans (which is what we should have been doing all along but MDA really likes to use their own scans).
Also, I know another colon cancer patient, Karen (http://karenscancer.blogspot.com/), who recently underwent the liver surgery and once they opened her up they found that there were more tumors then anticipated and could not operate. She had to go through all the post-op recovery and stay off chemo for almost 3 months and she is in a worse position now (b/c of no chemo) then she was before. Everything has to be weighed very carefully right now.
Those of you who know me well, know that I am a realist and a truth-teller. I want a doctor who is the same, and I think I have that. I am optimistic (most of the time) but more than that I think I am solution oriented. I will work toward solutions for this problem I have, and I will hope and pray for that solution to present itself clearly, but I will not be blind to the reality of what is going on. I know there are people who miraculously recover from this and I desperately want to be one of those people… but they are called miracles for a reason – they are the exception not the rule.
Wow, Maggie, I don’t even know what to say, except that I wish I could reach through this screen and give you a big huge hug and that lots of thoughts and prayers are continuously headed your way from McKinney!
Hope both you and Chris are feeling better soon! (((((HUGS)))))
Maggie, you are the miracle. Your strength and attitude and love that touches everyone who meets you is a blessing. I pray for you and Chris everyday. Do get well soon and if you need anything were here always
Love Leann & David
You are the bravest person I’ve ever met. Ande and I tell people about how amazing you are all the time. Know that you have many many people who you’ve never even met praying for you. The same goes for you too Chris.
Happy Anniversary one day early (we are moving and busy tomorrow).
Wishing you many more
Paula
DITTO, leslee! Our mind,will, deter- mination,strength,POSITIVE thinking is a tremendous part of Healing! Dr.L is just talking-out-loud about his own inadequate-ability at this point in the process. but,he should not dump it on you! There are other dr.’s and places in this world and heaven–use them! MAGGIE,find the same strength and will you had to finish law school and use it! None of us (including You) knows what tomorrow brings for us, but we don’t need a dr. telling us! FIGHT, FIGHT, FIGHT
Dearest Maggie,
We go to church sporadically, and this morning I did not see your name on the prayer list – and thought they may have forgotton my request. I wrote: ‘Please pray for Maggie Weaver, my niece in Texas, who, at only 31 has liver cancer and is struggling bravely.’ I live in Weaverville, and I think that there are distant family members of Chris’ here. There is a lovely Weaver family here – whose ancestors founded this very old town. (1787)Inside God’s little devotional book for women, I found the saying: “My job is to take care of the possible and trust God with the impossible.” Also, from Psalm 9:10 “And they that know thy name will put their trust in thee: for thou, Lord, hast not forsaken them that seek thee.” I find these words comforting, and hope you do also. I have pictures of Maggie and Chris all over the house, and yours are the last faces I see before I go to sleep at night. Much love, Frances and Warren Alcorn
Maggie – I think that you’re right to be realistic and solution oriented…but at the same time, don’t give up hope! Sometimes things turn out better than the doctors expect. And yes, miracles are the exception and not the rule…but there are a whole lot of people praying that you are going to be an exception! And it can happen!
I am thinking of you both all time. And praying for you. I too am praying for miracles for you. One day you can feel so optimistic about things, and the next you feel the polar oppossite. You and your husband will feel/know what is best in terms of your oncologist etc. These are such tough decisions to make. Keep praying even when its the last thing in the world you want to do.
Much love,
Karen