Another Decision to Make
For the most part, I think my spirits have been pretty darn snappy – given that only weeks have passed since I found I was diagnosed with cancer, and Stage 3C to boot. I also think that I’ve been coping fairly well with having not one, not two, not three but four surgical procedures in the same amount of time. In addition to all of this, I think “I AM WOMAN” to finally being independent enough to strip my drain tube, empty and reactivate my drainage system, clean and re-bandage my catheter site, shower, dry (my hair, too) and dress with no assistance and contribute to some of the small tasks around the house (i.e. doing laundry, making the bed in the morning, loading and unloading the dishwasher, etc.).
I really can see the brighter side to most everything, but what I cannot get used to is going to see my doctor’s and hearing what they have to say about my cancer diagnosis, treatment and prognosis.
Today was one of my less-than-snappy days. I went to see Dr. Cristofanillili. He laid out my chemo regime. Pretty standard stuff – a once/week dose of Paclitaxel for 12 weeks followed by a combination of Fluorouracil, Epirubicin & Cyclophosphamide once every three weeks for 12 weeks. Additionally, he believes that I may be a candidate for having an experimental drug, called a bisphosphonate, added to my chemotherapy.
Realize that I’ve consented to a variety of research studies so far, but they were “no brainers.” One allowed researchers to collect and use blood samples and leftover breast cancer tissue to see if it’s possible to identify proteins in the blood that reveal the presence of breast cancer. Another study I agreed to allowed for the aspiration of the right nipple so that fluid samples (this was done during my first surgery while I was “out”) could be studied to see if cells and/or other important substances related to breast cancer are detectable. A third study allowed researchers to take part of the breast tumor and surrounding area to see if a tumor with high levels of cyclin E indicates a spread of disease to the lymph nodes. And just today, I signed consent forms to participate in a psychosocial study about the best ways to provide information and support to women with breast cancer.
But taking a bisphosphonate? There are a few things to consider if adding this to my treatment. One is that bisphosphonates (although approved to treat osteoporosis) are thought to change the bone marrow environment in such a way that cancer cells may not thrive there. Another consideration is that the drug is experimental with regards to preventing a recurrence of cancer but there’s no evidence that this treatment will benefit me. A downside to taking bisphosphonates, and I think ironically, is that there is a rare chance that I could end up with osteonecrosis of the jaw (meaning that a portion of the jawbone becomes permanently damaged). I haven’t decided yet what I’ll do about agreeing to participate in this study - this is a “brainer” decision.
Mind you, my visit with Dr. Cristofanilli, was not only made up discussing bisphosphonates. It also included knowing the effects of the “standard” chemo drugs (hair loss, fatigue, nausea). I also asked Dr. Cristofanillili a variety of hefty questions about chemotherapy from what he considered my prognosis to be (he reminded me that I have Stage 3C cancer (notice the use of the word “have”), and because of this, there is a high likelihood of a recurrence of cancer), to when will I start chemo (probably on May 25th), to can I maintain a normal lifestyle (yes, as much as possible), to what does chemo do to the reproductive system (shouldn’t get pregnant during treatment and will need to see where I’m at after chemo) and so on.
By the time I left today (we arrived at M.D. Anderson 10:00 & left at 1:30), I was on information overload. I was and still am quite overwhelmed because once again, I am reminded that I’m still dealing with cancer and all the ways in which it’s changed and is changing my life. I realize I’m still figuring out how to cope, how to internalize and how to live with a cancer diagnosis, treatment and prognosis, but this is definitely my biggest challenge to date. And here I thought doing my Master’s, training for a marathon and working full-time all at the same time was a big deal!
I’m back at M.D. Anderson tomorrow, Wednesday, to see Dr. Meric. I’ll keep you posted as to how that visit goes. Love, Lisa
Thanks for reading Popcorn and Patchouli! Subscribe for free to receive new posts and support my work.
Chemo names Good morning Lisa! I am impressed that you have already learned to spell the names of those nasty drugs that will HEAL you, although I guess it won't feel very healing in the beginning... Each morning I wake up and immediately look to see if there is a CarePages message from you. Even though I may have heard the "facts" from Nat, I look forward to hearing your interpretation, how you feel/felt, spent the day, what happened at the doctor's office etc... When I read what you write, I am THERE, with you... maybe that's a scary thing for a mother in law to say!!
Our synagogue and the Orthodox Jewish women's prayer group who meet weekly are saying healing prayers for you each week as they do for others who are ill. You have prayers coming toward you from across the religious spectrum, someone's gotta be listening, right? Much love from Ami and me.
Healthy and loving thoughts. Hi Lisa, I have been a friend of Ami and Prue's for many years here in Ann Arbor. My husband worked with Ami and Prue, and I have had countless "girls" lunches and talks. If anyone can cheer up a person that would be Prue. Such a positive and cheerful person as I'm sure you already know. I don't have personal experiences to share with you but wanted you to know many many people are thinking happy and healthy thoughts and keeping you in our prayers. I really don't know Nat but probably met him when he was in high school a few years ago. The Rosenthal boys didn't go to the good high school (Huron) in Ann Arbor where my kids attended - just kidding. I just know that you have married into a wonderful and loving family. Your notes are wonderful to read as you write so well and share so much of yourself. This has to be a very healthy process for you and everyone who cares. Keep your positive thoughts. J.
UPDATES... Hello...It sounds like you received a lifetime's worth of information at the dr's appt. It is nice to know the routine ahead, maybe it can be of some comfort to know what to expect, at least a little.
Today is rainy and dreary...the best kind of day to cuddle up with a book, maybe a little t.v. and just relax. Maybe you can get in a nap after your dr's appt today. :)
Things here at school are winding down. Only 21 more days with the children here. I think time passes faster as we get older. I remember being in elementary school and feeling as if school years lasted forever! Now, they go by in a flash.
Well, a class has just come into the library so I'll need to go for now. Sending big ((((HUGS)))) your way and lots of prayers!! XOXO, M.
Drugs, drugs, drugs So no one warned you about the pharmacology you had to learn as a cancer patient? And then, darn it, they call all those drugs by 2 names just to confuse us all. I did in fact have most of the drugs you are about to try. They are taking out the big guns because they want to kill the cancer, but not the woman. They have to warn you about all the side effects, 'cuz you'll get some, but not all of them. They have lots of meds to help you through it all. I particularly liked the "don't- worry-be-happy" drug I got with each infusion, but it was especially helpful for that first infusion. My brother was being treated for a different cancer at the same time as me, and he took the don't-worry drug daily through out his entire therapy and seemed so unconcerned about what we were doing to our bodies! Both of us have been disease-free for 4 years.
You are doing great so far-and now have some time to get stronger before the infusions start. Continue focussing that energy on healing, I'm convinced that all that positive energy from you and all your supporters helps keep the evil disease at bay.
Good luck with your tough decision about the bisphosphonate- that's a new one to me. What a time and mindset to be making a decision about another drug that may have side -effects! love and healthy thoughts, C.
Brain overload! I don't know how you do it. I just finished reading your message and my brain is "fried." Lisa, I wouldn't know where to begin if I were in your shoes. What questions to ask and then if I did ask a question I really don't think I would be able to understand the answer let alone keep the positive attitude you have been sharing with all of your friends. YOU ARE AN AMAZING PERSON!!!!!! TRULY!!
You are in my thoughts and prayers daily.
Don't forget to take some time to practice that Lego game so the next time E is over you can really give him a challenge! Sending hugs and sunshine your way, A. P.
Hey, Lisa Thanks for keeping us current on your situation. It's so nice to hear first hand. The weather is wild here at school, and the kids are wilder! Nothing like a thunderstorm to get them all jacked up. I'm feeling a little wild myself, so at least our moods are matching today. :) My summative is over (S. said she's half done with your list) - so that's always nice to have out of the way. L. organized PINK day every Thursday. I've notice little pink ribbons popping up everywhere. You're sure are loved and missed around this place, but you already knew that, didn't you? I hope to zip down and visit again soon. I'd love a chat on your patio. Take care, and please know you're thought of constantly. Love, D.
Thinking of you. Lisa, I think of you so many times during the day --especially now that we are in the foods lab! Mr. E. used to get physically ill if he thought he had to swallow a bite of food a student had prepared. I'm sure it had nothing to do with the fact he had seen so many of my students in his office.! One time when he observed we were making Thumbprint Biscuits. The question on the walk thru was "How do you know the cooks have washed their thumbs?" Luckily I didn't have to reply,"Don't know". I know that you would be different and because of our budget we are actually vegan -- can't afford the beef!!! I can say stay strong, but you are. I send good vibes your way often. Love to you and yours, M.
HI Lisa decision opportunities are coming at you fast and furious, we can see where it would become overwhelming, but it sounds like you're handling it very well and thinking through your options and making decisions which are in your best interests, KEEP UP THE GOOD WORK! T.
Hi Lisa - S. here - sounds like you are getting your strength back and I bet it feels good to be able to do some things around the house. Every day will be better than the last!!
Just checking in Lee. Your sister fell asleep on the couch before she could give me the report for today (she actually made it until 9 PM tonight...she's quite the wild thing)! It was good chatting with you last night (or was that 2 nights ago?)...you sounded great. You'll be happy to know that Max had his first Interceptor pill tonight and so far today we haven't had any "Max issues". Say hello to everyone for me. Take care and talk to you soon. Gary
Hello Friend I'm hoping today was a good day for you! I'm really looking forward to seeing you on Friday. I have this crazy thought because it's almost past my bedtime!!! I'm thinking you need to wake up every morning to songs like...Helen Reddy's I am Woman, Aretha's R-E-S-P-E-C-T, and maybe even Carol King's You’re So Vain...not that you are even remotely close to being vain. It's just a song that to me screams...don't mess with me because I'm healing each day from this thing called cancer. (You could pretend the cancer is the one that's vain!) As I'm writing, I'm picturing you playing "Man, I Feel Like a Woman" while dancing around as you tear off bandages and clean drainage tubes! HHHHHMMMM...you could get Nat to post a video clip of this on Youtube. You could go straight from MDA to the David Letterman show! You go girl! (I need to make a mental note that I should not post anything after 9:00 p.m. because they are so doggone silly!)