Chemo went very well today. Laura F, if you are reading this, thank you for the cream. It worked great today. I did not even feel the big honking needle go in today. I am not sure if the skill of the technician plays into that, but it was a breeze and I am attributing it to the magic blend of balms you gave me. Thank you again Laura...it is awesome! And thanks Julie and Carrie again for being with me. I love you girls.
I know most of my posts are sunny and happy in this blog. I can't help it. It is what gets me through each day. I also wonder if it is not more than a little annoying. I further wonder if I am fearful of describing daily life a little closer to how it really is. Not that I am dishonest in this blog. I DO indeed have way more things to be grateful for than to complain about. But I wonder if I am afraid people will stop coming here if I put on display all of the ugly truths of what I am going through right now...both physically and mentally. Will they think I am a complainer? My personality is such that I will not allow myself a pity party and am not very good at attending others. I think I am compassionate but I loathe the victim mentality. It's true. And it is a huge character flaw of mine.
So where am I going with this? I have no idea. I guess I got thinking about letting you all know that, while chemo went great today, I am on another "vacation" from my nightly chemo pills. When I thought about writing that I thought you might wonder "why yet another break?" when I am doing good otherwise. And the truth is that I have been miserable. I have felt pretty bad with the heartburn, bone pain and weakness, but the diarrhea has been horrendous. I have had acute GI issues with as many as 30 "episodes" a day. They wake me out of a dead sleep and have me scrambling for the bathroom. They exhaust me and leech all the hydration out of my body. I don't want to put anything in my mouth for fear of what will happen 8 minutes later (literally) but sometimes I am so hungry that I eat whatever doesn't nauseate me...and then I pay - dearly. I sit in warm baths all day long to help with the side effects of this side effect. It is just gross. Some days are worse than others.
Thank you for the loving advice I know you will send my way. I have tried it all: eating the BRAT diet only, taking Imodium, gobbling lomotil, drinking pure aloe...living on water and sugar-free electrolytes alone.
The part that has me stressed mentally is the fear that I will be kicked out of the trial. For now, they are just going to try another break. If they end up having to dose reduce me again then I am out. Remember, even with 2 dose reductions, I am still on 1,000 mg a day. So I am praying that my precious intestines will hang in there. This is such an important trial and this drug is so effective. The drug company has a laser focus on me and literally wants to know daily how I am. My success could really put wind in the sails for FDA approval of this drug...specifically approval for neoadjuvant lapatinib in advanced breast cancer cases. There are only 85 of us worldwide in this trial and I was approved after incredible scrutinty and screening. My case matches their criteria perfectly and it is just so important...for me and the thousands of woman who will be in my shoes someday.
I don't want to fail, as irrational as that sounds.
xoxo
p.s. I HAVE to end on a positive note: I DID NOT GET THE FLU. Angelica's flu flurbies didn't bring me down. Thank you God!!
14 comments:
I'm so glad it went well today. I, for one, want to hear the good, bad and the ugly. I will read your blog no patter what! I continue to pray for you daily. I pray that you will see this trial through to the end. I pray for your full and complete recovery. God is in control and has a plan for your life. You will get through this.
Love, Janet
P.S. Yippee! No flu!
Mo- It was a great day. Loved catching up.
Kisses,
carrie
You are a true champion!
I'll read about whatever's on your mind or in your life. That's what blog friends, real friends, all friends are for. I'll pray that you get to stay in the trial, even though it's causing some temporary ickiness. It sounds very important to you, and if it's God's will, it will be done! Hugs from OKC--I wish I could do something to help.
Hi Maureen,
You shouldn't give a second thought to "censoring" what you post here. This blog is YOUR page. It is YOUR story, and that's why we keep reading. We love to see your uplifting, positive, joyful posts... but no one expects your to uplifting, positive, and joyful ALL the time! We want to know what's really going on with you... like Janet said: the good, bad, and the ugly! We're here to read the truth!
You should feel free to absolutely be yourself, say what you need to say, share anything you want to share, and ask for specific prayers or help whenever you need it!
That said, I'm praying for your poor intestines (OK, that just sounds a bit weird). I had a very minor bout of what you're describing as a side-effect of a medicine I was taking recently. I know it's no fun, and I know what you're experiencing is way worse than anything I dealt with.
Many prayers that you're body will rally, and you'll be able to resume your nightly meds, and continue with the trial. Stay strong, Maureen!
((u))
Mark
p.s. I just had to tell you, I made brussel sprouts for dinner tonight. :-)
The princess is precious! How ever did you manage to stay flu free...that has to be a sign of your strength. I second Janet - you have lots of prayers and you are meant to see this trial through.
Miss you.
Maureen, I ditto what everyone has said about what to and what not to blog. We don't come to this site to feel good about things. We come here to find out about you. So, bring it on -- the good, the bad and the ugly. I'm not a doctor, except the one I play on TV, but I did read in the paper this week that aloe can have adverse effects on some folks' GI tracts. Maybe you are one of those. That's the end of my advice. :)
I think about you every day and pray for your health.
Love,
Martha
Thank you guys...so much. Martha, the aloe tasted like complete crap so that goodness I didn't continue. You play a very convincing doctor...and your best side manner rocks! Mark, I love getting your virtual hugs. ((u))right back to you. Thank you ALL for your support...through the good, the bad and the ugly! xoxo
It is truth not complaining...you have to understand that you "happy cancer" patient....I totally get it struggled with it myself...but I found my friends and family wanted to know...for it is so hard to understand and is certainly different for all!!
I am so glad your chemo went well today and the port the balms are GREAT get them on 45 min before and definitely the tech matters...believe me the tech matters!! You decide on yours and try to get them each time:) Nothin wrong with that......ugh just thinking about that needle make my tummy have butterflies!
We will pray that you can remain in the trial it is so important for so many reason's as you know...God will ultimately lead you to what is best. I hate you are getting so torn up by this trial...I had not heard so much difficulty with this drug. Are many of the others having similar issues?? Rest and take the best care right now....I want to just come and give you a long gentle hug!! Fists up...we will never give up!! JoAnna
It is so great that you did not get the flu as I am sure you are kissing those sweet kids so much. And I agree with what others have said about the good and the bad...if all we wanted to hear was the good, then we would read "People Magazine" for our fantasy fix!!
Take care
Love, Sally
Delurking to say that we are praying for you and your family every day. Thanks for sharing the good and the bad. I hope it works out for you to stay in the trial for all the reasons you mentioned. Hang in there!
Mimi,
We are here for the GOOD and the BAD, NO MATTER WHAT! You are unconditionally loved. You are unconditionally loved. You are unconditionally loved. You are unconditionally loved. Got it? Good.
Leigh, Kendra and Alex
Bring it on, Maureen. The backs of your friends are many and strong. On the days you feel weak, we will carry what you can't. It is but a tiny gesture we can offer in a huge ordeal. I for one have ceased taking so much for granted--a gift that I cannot thank you enough for because the cost is so great on your behalf.
Hi Maureen - You are being real and it's strong and it's inspiring. Thank you for sharing your experiences. We are all sending good thoughts to you. I think it's truly amazing your thoughts are with all the women that will come after you...
All my best! You're in my thoughts...
You are so good at not letting us know how bad the bad is and yet so good at sharing all of the good!I love you tons!I want to hear it all...read it all!!!
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