The week seemed to just fly by. It was hard to carve out the time to sit in front of the computer. I am very aware of how I spend my time. It is difficult to tear myself away from the kids or Kelly or a quick phone call. Today is the most ideal time. I have spent the morning and afternoon with Kelly and he is pleased to be watching a show about choppers. I am pleased to have a bit of stamina to gather my thoughts. The kids are not home from school and Clay is with Jenny. The spring breeze is coming through the open windows. I love the 8 nice days we get before summer here in Philly. I will try to appreciate them instead of just complaining about the awful weather in this part of the country.
Today was my weekly with Dr. Demichele. I am not really having much stomach pain or any of the bad symptoms associated with this chemo. Actually, I am just very very fatigued. It is possible that I will develop some of the symptoms later. Dr. Demichele and I spoke for awhile. My test for Her2 status came back negative. I will not be getting the medicine herceptin. Which is a bit disappointing because usually with cancer as aggressive as mine women are Her2 positive and can get a medicine that seems to really halt the progression of their disease. After feeling my neck she felt that the tumors seemed smaller and softer. Which is good. But after looking at my scar, from my mastectomy, she is concerned that I may have skin mets on my chest. Which is bad. She looked visibly concerned. Now I know I am stage 4 , but Lord can I just get a break? Can just one thing get better without something else rearing its ugly head?
We decided that the day she gets the results of my next scan (May16) she will call me. Basically, I do not want to wait for a week for results. If there is any progression in 6 weeks I will be switched to the 3 drug regimen. For now I am trying to stay in the moment. Maybe the Xeloda will work. But I have been saying that for nearly a year. It is hard not to be a bit of realist. I know that there are people who are just super positive about their treatment. I am not negative. I just recognize that at this point with how quickly it has progressed it may be hard to get under control. I sometimes feel very bad that I am not all sunshine and flowers. Honestly, my feeling is just that it is what it is. I can not be bothered to just wait for chemo to work to be happy. I am happy despite the fact that it may never work at all.
Kelly and I spend more time talking about my disease now. Or what will happen if I don’t make it. Not because its what we want, but because if we didn’t we would be wasting time. I think we feel very close and engaged. I think we both recognize that it is essential to be very protective of the time we have left. I am trying to spend every single day with my kids and husband and friends. We take nothing for granted. Kelly hugs me all day long. The kids do to. We just embrace as we pass each other. I wish I had more energy. I am sleeping about 2-3 hours during the day. I go to bed early too. I am on the same schedule as my toddler.
But it is not so bad. I am hoping that getting my blood sugar under control will increase my stamina a bit. And I know I need to try to get more excercise. I have lost a lot of weight but also a lot of it was muscle. Its funny because I think things like I do not want to have to work out…but I hate being so weak. No motivation. Maybe the new spring weather will be enough to get me moving. We should hope. I hope that you are not bummed out by reading any of this stuff. Honestly, I feel like I am just keeping it together living day to day. In the moment. What else can I do? I take the medicine. I love God. I pray. I spend time with my loved ones. I apologize that I do not write about how “super positive” I am that this chemo will work. I just focus on what I have control over instead of what I don’t.
Andrea, I think you are being realistic, who cares about being “super positive”. My mom has metasticized breast cancer and I think that you can be positive and still be realistic. We know that she is going to eventually die from this. She and my dad are traveling in their RV as much as they can in between her chemos. She says she can sleep just as well in there as at home, but it is important to them to build those memories.
Spending time with your husband and kids and friends is the most important thing and the memories are going to help them get thru the rough times ahead.
You are in my prayers
Cheryl
You have apologized in other posts and it always makes me feel so bad. You are amazing. I feel you are very positive and uplifting. Just what you said today has made me stop and think. Everything you said about the way you use your time and how you show you love for one another. It’s what we should all be doing every day but we don’t. You are so many things right now ,mother, wife, friend daughter, sister, child of God, woman fighting cancer and very much a teacher. I learn from you with each post. You make me laugh and make me cry. You make me think and pay attention to life. Your blog has grown into much more than you ever intended. We are so blessed and I thank you.
Dear Dear Andrea:
You are doing everything that you need to do. You cannot do anything more than that.
You do not need to be super positive. I believe that it is much better to be real.
I am going to be real with you:
I am and always was Stage 4. IBC is very aggressive.
I have had 33 chemo treatments in 23 month period and 17 blood transfusions. You can get better. I have been alive for two years now since my diagnosis.
I had very bad skin mets from my neck to my elbow. No chemo got it away except for FEC. Now the skin mets are gone.
I don’t know all the drugs in the FEC but I think they are cyclophosphamide, eburubic (red devil) and Five f u fluricil?
Have faith, keep it real. Hope and living day by day are good things.
I want you to be well.
Love Renee
You seem to be very well informed about your meds, but please be sure to ask your doctor about the side effects of Herceptin if she ever decides to put you on it. It carries a major risk of heart problems for some women. I don’t get bummed out reading about all you’re dealing with – I feel privileged to get a glimpse into your life and hopefully I will remember your great spirit, huge heart and awesome attitude should I, God Forbid, ever have to deal with something like this. You inspire me to turn away from all the negative darts that hit me everyday and let the small stuff go. In my eyes, you are very brave. God Bless!
Tina in WV
Andrea – I read your blog daily, and when you do not write, I worry about you. I came across your blog because my husband and myself are friends of Kristine Beckers parents. I cannot express what I feel reading about your life. I am feeling very humbled. Everytime, something happens in my life, and I start to feel bad about it, I think of you. What you and your family is going thru and how unselfish you are about sharing your feeling and your life story with others. You encourage so many people to Live thier lives and appreciate what they have. You have reminded me so many times to let the worries go, and to let God lead the Way. Thank you for sharing, you are inspiring and a blessing to so many people more than you could ever know. My prayers are with you and your loved ones. Deb
my dear, i love you. i don’t think you should have to apologize to anyone for the way you look at all of this. you are an inspiration. i think you are wonderful and i am grateful to read how you feel, how you really feel.
i am sorry i have been mia, i have had step throat since last weekend! when i am better, i’d like to come hang. xoxoxo
For what it is worth, I think you are brilliant and beautiful just the way you are. Never apologize for being real and being you. Praying for you and yours daily.
From reading your posts, I have a much better grasp of the value of life. Watching your video brought home how ordinary the struggle is. Cancer is not a weird thing happening to some faraway person; this could be any one of us. Sharing your journey is a great gift you are giving.
Despite that, I am still hoping and praying for a happy ending!
Hi Sweet Andrea:
I think just by being you is what works for you!!!! Keep yourself just the way you are. As I said, each person is different…what works for someone else may not work for you….just continue to be YOU!!!
I finally was able to download the video. Thanks so much for sharing that…..:)
I am going to be in Charlotte,NC Friday til Sunday, so no computer!!!! I will hold you up in prayers….
Love and hugs….Donna
Hi Andrea,
I ran across a local organization that may be helpful to you and your family.
http://www.breathingroomfoundation.org/
Barb
you are awesome!
If only I could crawl inside that body of yours and either do battle with that “devil” or gently sprinkle healing “fairy” dust………whichever character can do the job, that’s all we wish for you. It’s not hard to imagine your pain and frustration. How you endure is unimaginable to most of us. Just keep fighting, who knows.
SPRING THE SEASON OF REBIRTH AND RENEWAL, may it be so for you dear Andrea
I love you and have a huge hug that I’ve put aside just for you. See you tomorrow love!
Please dont apologize for your “attitude” or not writing- I think I can speak for many when I tell you that you brighten OUR days, we find you funny and warm and just want to check in and know that you are still kickin’ it!
Not a day goes by that I dont pray for you and your family-I am so happy to hear how normal your life continues to be regardless of all that swirls around on any given day….you are doing exactly what you should be doing-loving Kelly and the kids, spending time with friends, resting when you need to-LIVING!!
God will continue to watch over you-Spring is the time for renewal-I am wishing you warm breezes on your face and a little sun too!!
Be well-Im pulling for you and praying for you!
Love
Michelle
Hello Andrea,
I read your column every day. I also have IBC, Stage IIIB awaiting surgery June 11. You are such a realist. At times it is hard to read your column because you are so brutally honest, but I always make my way through it. What really bothers me about people that reply to you is how they say stuff like, “Oh, I’m having a bad day but when I read what you’re going through I feel better about my life cause it’s not near as bad as yours”. What self-serving assholes they are!!! Those type of comments just make me crazy. Anyway, much love to you and your family. I have a great husband and 11 year old twins that have been devastated by my dx., but heh, I should take heart, cause when I tell people they will feel better about their lives (grrrr).
Sweet Andrea,
To me it is your “realness” that brings people back to your blog! You give encouragement through your words of honesty about your daily struggle, but continue to give praise to the Lord, state where your strength comes from and shout the importance of prayer! YOU ARE A GIFT TO US ALL!! You stand for truth and truth is light!
Your perspective on how you live your life day to day, seeking the beauty of each one given, and sharing with us all the time and memories you are making with your family and friends….is truly the path we all should be taking. None of us, regardless of our health, should take a day for granted. Each of us, just like you, have been given a purpose by God to accomplish here on earth, and we never know when our time will end. We should strive to make sure we are out there reaching out, serving and loving all we can each day. And just jumping in my mind is this thought, “Andrea is the cheerleader for us all….encouraging us through life!” WOW!! WHAT AN AMAZING WOMAN!! WHAT A LEGACY YOU HAVE!!
GOD BEAMS FROM EAR TO EAR EACH TIME HE REMEMBERS YOU!!
Blessings to you! Praying for you in Crawfordsville, IN
we love you andrea. dont apologize for anything. youre a wonderful lady and friend. keep catching those hugs as people pass you by. youre in our prayers. we’re so sorry we cant be there tomorrow, we’ll be in upstate ny visiting jenna’s family. be yourself in Jesus.
jeremy and jenna
You dont know me but just wanted to let you know I am praying for you and your family. You helped me through what ended up being a IBC “scare” and you made an imprint on my heart and I keep up with your world often. Live in this moment and let it be what it is. I wish you peace and health.
MrsRony-Ohio
I’ll read whatever you feel like writing.
“And so with the sunshine and the great bursts of leaves growing on the trees, just as things grow in fast movies, I had that familiar conviction that life was beginning over again with the summer.” ~ The Great Gatsby
we love you so much right where you are