Ten hours, 2 oncologists, 2 hospitals, 1 IV infusion of Zometa, one blood draw1, one knock-down drag-out fight with insurance, and first 4 chemo pills taken. That was today.
I don’t feel well enough to write out everything, but I do want to do a quick update because I know so many are wondering and I can’t address all of the messages individually.
My brain MRI came back clear. I found out when I was in my meeting at Sloan Kettering. Tears of relief.
After a two hour chat with my oncologist there I made some treatment options.
I will do monthly infusions of Zometa to strengthen my bones. Side effects have started already from this and are worst on the first dose. Flu-like symptoms including bone pain, fever, joint pain, etc. should sideline me for the weekend.
My chemo regimen will start with Xeloda. It’s an oral chemo, in which I take 4 pills in the morning and 4 at night. I do this for 7 days. Then I get a week off. Usually days #5-10 are the worst for side effects. Fatigue will be bad. I will not lose my hair.
I will do these two things and we will do bloodwork at one month to check my tumor markers (CA 15-3 and CA 27.29). They may not go down right away even if the chemo is working. It may take another month or two to see that. Also, there is a mechanism by which when you start attacking cancer it may temporarily make the tumor markers go up. So, you can’t put stock in the first month’s blood levels. I happen to be one of the 2/3 of patients who actually show elevated tumor markers during a metastasis. In 1/3 of cases, patients with metastatic breast cancer will not have elevated levels. So bloodwork will be one tool I can use to monitor this process.
My ribs can’t heal until the cancer is reduced. But the Zometa may help with the pain.
I will have a repeat PET scan in 8-12 weeks, probably 8. We’ll see if the cancer seems to be holding steady or even shrinking. Again, holding steady would be enough to continue on the regimen I’m on.
It’s mindblowing that the rest of my life will be spent on some form of chemo. I’m coming to terms with that. It still scares the crap out of me.
But, I have a plan and I’m going to do what I can to be strong.
I’m tired and dizzy and worn out. But I do appreciate all of your messages and love. It matters.
I hope this gives everyone an overview. I’ll try to address questions at a later time.
xoxo
lisa
- during which the phlebotomist told me that “you’re only given what you can handle.” If I hadn’t had a needle in my hand I would have punched her… [↩]
Link to Twitter
Your strength is astounding – I’m pulling for you, for what that’s worth.
Sending love and support. Thank you for the word–do try to get some sleep.
Thank you, Lisa, for taking the time to share this update with your friends and supporters. I’m thinking of you every day, sending you every good wish, and hoping you can get some rest tonight. xo
Thinking of you. Thanks for taking the time and energy from your limited supplies to write this.
Thanks for updating us – we all care so much #lovelisa
I tweet you every day. But going out of town for one night Friday. So here are my FRIDAY AND SATURDAY tweets : “Friday I send you the essence of violets along with some puppy breath.” “Saturday I wish you easy smiles and deep relaxation.”
You are amazing and an inspiration. You are providing such a valuable tool by documenting your experience. You are love defined. Sending so much love, and hope for healing and strength, your way. Thank you.
I’m so glad to hear the brain scan was clear. Wishing you a return to good feeling and energy soon. xo
So glad your MRI brain scan was clear. SO relieved to hear that.
Thank you for expending valuable energy to keep us aprised. xo
So relieved to hear the brain scan was clear — that is very good news. If you’re getting your Zometa treatments in NYC, I’d be happy to come by and sit with you and/or run any interference you might need, get scripts, etc. if that would help. No pressure, just know the offer is there. Hope the side effects aren’t too bad tonight and you can get some much needed rest. Big hugs to you! XO
Your grace and poise throughout this is so inspiring. Thank you for your updates, I’ll continue sending good thoughts your way. xo
Thinking of you, as ever. xx
Also thinking of you. Hoping your ribs stop hurting soon.
Taking all good news, know you’ll be wise about shoring up the strength you have, hoping ribs heal. Promise not to make you laugh too hard on twitter. Really, just here with my best hopes. xxoo
You really are so amazing and loving to share your little bits of energy in updates to us – selfishly, I am clinging to every single word you post because I am so inspired by your generosity, and so desperate to know how you’re doing … but I wish with all of my heart and soul for as restful a weekend as possible for you. xxoo
Hi, Lisa; I’m new here but my best friend Summar (@Summar_breeze) forwarded me your blog and Twitter feed and now I’m following you as well. She was just diagnosed with Stage IV metastatic breast cancer last month; it’s in her bones also, like you. My heart goes out to both of you; I will continue to get your updates via Google Reader and Twitter. Thank you so much for your words and for being brave enough to share.
Thinking of you, Lisa. Your updates are incredible. — Gayle Sulik
Hi Lisa.
I just want you to know I am thinking of you and wishing with all my heart that you feel as well as possible for as long as possible, enjoying those most important to you. You don’t know me, but I have followed you via your blog, and all I can do is bear witness to your journey and thank you for information and education you provide, which I imagine costs a great deal with such limited time and energy. The work of educating when in severe pain or fatigue is such a huge job. I appreciate this gift from you.
Hi Lisa. You also don’t know me but I have started following your blog. Thank you for the information and I am hoping that the treatment works for you and that the side effects don’t become too hard for you. I am sending positive thoughts and prayers your way.
You are so on my radar,my friend. That you have the grace and presence to keep us updated is such a gift. I only wish we could offer as much in return.
essence of violets with puppy breath Molly Campbell! That is priceless.
Thank you for thinking of us and keeping us updated. I’m thinking of you each and every day, as are so many others.
You are an amazing woman – thanx for sharing your experiences with us.Sending you a warm sunny South African survivor hug.
I don’t know you personally, but through Twitter friends. I find myself checking your feed even when I have little to no time just to see how you are doing. Thinking of you and your family through this fight and day-to-day.
Sending love and comfort. xo
Dearest Lisa,
A picture of you and your beautiful family have a prominent place on my desk as I think of you every day. Your masterful words of courageous honesty here are so inspirational and nothing short of amazing during these most challenging of days for you. Hope, faith and love to you, my friend, ’till next we hug…..xoxoxo
This one is in a 9 inch square po,ulsualty in a south window, but sometimes I move it to an east window in the kitchen where I can enjoy it more. It blooms and blooms in either place in either place. So much fun!
Noe sÃ¥ nydelig!!!Her var det sÃ¥ fint at jeg blir mÃ¥llaus……Tror nok jeg hadde sovet som en prinsesse her!nydelig med blomster pÃ¥ nattbordene….holder en knapp pÃ¥ forglemmegeiene jeg :o)ha en fin helg tante Monica….godt jobba!!
Beautiful! I will trade you a cashew bar for a dumpling….YUM! The flower is so pretty and you went through so much work to make your dumplings. I am very impressed! =)