Tuesday, September 24, 2013
Changing the World in Yesterday's Makeup
I’ve decided that the title of my memoir will be “Changing the World in Yesterday’s Makeup”. Nothing profound there…it just so exemplifies the status of my life these days. So much to do and so little time. Never enough time to spend with my sister and my precious niece and nephews. Never enough time on my horse. Never enough time to say the thousands of thank-yous that need to be said in a personal and meaningful way. The thing about living with the OC—and especially in the last month as I have had to wake up every morning and really confront the reality that for each one of us, our days are numbered—is that life both speeds up and slows down. On the one hand, there is so much still to do. Life is frenetic—every hour spent sleeping is an hour not spent having one last chance to do one last amazing thing. If nothing else, the last seven years have given me the most amazing appreciation for the beauty of every single moment. That is a priceless gift that I would not trade. Having said that, I often ask God if there isn’t an easier way to that realization. Why does it take such a keen awareness of running out of time to make you value it so much? And yet, as my life is racing ahead and I am frantically cramming experience after experience into it, things are also slowing down. I am making peace. And that, as odd as it sounds, is an eerie feeling. There’s almost a resignation to it that my head is finding hard to accept. Saying “I love yous”, saying “goodbyes”, prioritizing what I want to see one last time. There’s a beauty in it because it is so intentional, so deliberate. What a blessing to be able to truly say, “I have righted my wrongs. I have my faced my fears. I have let those who matter know that they matter.” But it also sort-of takes the mystery out of wondering what comes next. In my heart, I’ve still got a cabin in Alaska calling my name for a year or two. I’m still waiting to get picked to work at McMurdo Bay in Antarctica. My soulmate is still out there and we still need to join the Peace Corp and learn to speak Spanish. But then, there is so much to leave behind and so little chance to wake up surrounded by the ones I love, in the town I love, doing work for people I love. These, my friends, are the questions that we would all be asking if we started living as if our days were numbered. These are the questions that really can’t be answered because the point is really just in the asking. And so, for now, I won’t slow down long enough to wash my face before my head hits the pillow each night. That is one thing I can control—I can decide to forego skincare for ten more minutes of soaking it all in. I think it’s an awesome trade—just don’t tell my dermatologist.
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I don't know what to say other than I want to take this opportunity to say I love you, I love you, I love you...
ReplyDeleteFrom Michelle Pollock
DeleteI have ovarian cancer also, stage 3c. I sympathize with your plight, of course, but I do not support you getting this drug. You keep mentioning "your beautiful life", your 'rock star life", etc. Also you like to mention your job resume, and how you have helped others. Perhaps it is unintentional, but these types of comments come across as sounding like "Here are the reasons I am special and deserve the drug over everyone else". You and your family have been on Inspire (ovca support board) asking for everyone's help in getting you this drug. I am on Inspire also. My first thought was, wait a minute, why should SHE get the drug, and not the rest of us here?? Not to mention there are so many women on Inspire who are in far worse shape medically speaking than you are. I know you are saying you are advocating for compassionate use policies for everyone, but the reality is, you are advocating for YOU to get the drug. Guess what, I would love to try it too! So would a lot of women with ovca. But I think Biomarin has to be fair to everyone. Let them test the drug properly and make it available to EVERY woman with ovca who needs it, not just you. Please accept this post in the spirit in which it is written. I am NOT attacking you. I just think maybe you need to see how you are viewed by some other women with ovarian cancer, including myself.
ReplyDeleteHi verysimpleblog, I am so sorry you are facing ovca also. I can understand how some of the coverage can come across as you state, but I hope that I can provide you with an alternative perspective. I know Andrea personally and can attest to the fact that Andrea's fight is both for her life and every other person facing a deadly disease without treatment options. She truly wants a change in compassionate use policy so that everyone has access when they have no more options. If you or anyone you know have no treatment options left, I urge you to apply for compassionate use. Speak with your physician and the FDA immediately! One problem is that many people don't know this is an option and doctors either don't know or don't tell their patients. As you no doubt know, living with cancer is at times a psychological torment. Add to that the fight many have to wage just to get treatment, and the toll seems unbearable. Andi is able to continue her fight not only for getting a drug to help her and to change compassionate use policy, but also her regular day job fighting for the lives of women and children living in abusive homes, by continuously cheering herself and her family and friends--when she says she has a rockstar life, she's giving herself the psychological boost she needs to face these many battles. Fortunately, many women with ovca see Andi as she truly is--an advocate trying to make a difference in the world. We hope that this struggle makes a true difference so that you and all women who have reached the end of the road on treatment options, can receive promising experimental medications just as the FDA's compassionate use policy was meant to do. Thank you for expressing your opinion so that we can all see how messages may appear to some. My best wishes are with you and hoping you beat this terrible disease! And please do everything you can to survive--for yourself, your family, your friends, and your community. They need and love you! So seek compassionate use!
DeleteI hope you have a chance at the drug just like Andi, and all the women who are fighting this awful disease. Your frustration is noted and heard. Andi and her mother are friends of mine... they are not as you portray them. They are caring, and always seeking ways to help others... as with this fight to get the drug Andi needs.... she doesn't say she is more worthy.. she says SHE IS JUST LIKE EVERYONE ELSE... who needs Compassionate Use to experimental drugs. I continue to pray for all of you wise/strong women battling this disease... why not join forces? And let's win this one for All woment who can no longer take traditional treatment...who NEED to take a risk on an unproven drug... I will fight for you and Andi... let's join forces and make this a win/win/win for everyone.
DeleteGod bless you, Sandy Bunch, MTS
"I know you are saying you are advocating for compassionate use policies for everyone,..."
ReplyDeleteYes, what Andi is doing will and IS impacting MANY women. She's raised awareness more than any woman I've known. A simple "Thank you" would suffice.
I recommend that you stop criticizing and begin fighting for compassionate use as hard as she is.
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ReplyDeleteCome on, folks, lighten up. I don't know anything about the person who wrote this but was has been posted. There have been times when I could see how she might have reached her perception of Andrea. However, those of us who know "our Andi" realize that some of the attitude that might show comes the position she is in which, according to the "objectionable post" is the same place the poster is in. Give some leeway. Anyone facing their own mortality is in a position that those of us who are healthy can not presume to understand, not even a mother, Karen. We've all be talking about the lack of compassion shown by BioMarin. Let's not sink to that level. I do agree that the post could be upsetting if you let it. But maybe a little compassion on our part is in order. Sorry if this ruffles feathers. That is not my intention. I guess it's the journalism training that taught me that truth, honesty and objectivity were the cornerstones of the profession. I'll admit this objectionable post might have lost sight of, or disbelieves, the truth--or maybe not. It would be just as easy to start calling for BioMarin to release bmn637 to all those women who are in the same spot at Andi and whose medical team would think are viable candidates for the drug. If we're going to advocate for all, let's advocate for all.
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DeleteThursday Prayer for Andi (per her request) Share RT and Post....show Andi that we have not lessened in our efforts and that our faith in her recovery has never been stronger, than now. Thank you. Love to you Andi.
ReplyDeleteDear Lord, Please be with Andrea today, more than ever, to remind her of your ever present and infinite love for her. Please help her to walk in Faith and let Peace wash over her. I pray to you that her voice is heard by the person who can make this change for her and everyone else. Please help her to feel better today than yesterday, that she may continue to nourish herself, to keep her strength. Please be Hope in her and her loved ones' hearts today! Please bless her army who continue to fight for her and for others. Please help us reach who we need to reach, when we need to reach them, in the way that changes hearts and minds, especially at Biomarin. Please let Compassionate User Reform continue to rise in awareness. Please Lord, in your love and in faith, I pray. Amen.
As much as you wish you could control the internet and all its content, I am very much on Inspire AND Facebook. I have been with Inspire for years and have a great group of friends there. We have been supporting each other for a long time. Your family blew into the community out of nowhere, like a tornado, only when you needed our help to get your daughter a drug that the rest of us can't have. Some of us feel very used. On Facebook I am a member of a wonderful ovca support group, a group who have been together for years. I am still very active on FB and on Inspire, sorry to disappoint you. You do not control me and where I go on the internet .My friends at Inspire and Facebook have been there way longer than Andrea has been, and will be there long after her little selfish crusade is over.
ReplyDeleteMay I give you some addition constructive advice? Your most recent posts on your Andi's Army page encourage people to get you more 'likes' for your page. It doesn't take a zillion 'likes' to get something done, it takes only a few people, who know how to get things done. So it sort of seems like it is turning into a popularity contest for you. Today you are encouraging everyone to tweet at Jon Bon Jovi. Why is it important to you to have JBJ sign your petition, do you need attention from him? That seems like a waste of effort from your 'army'. You are now claiming that you want to overhaul the compassionate use system. Do you mean worldwide, at every drug company? Isn't that sort of a huge undertaking? What about focusing on something small and tangible, such as getting Biomarin to resume testing BMN 673 on ovca women? They are now only testing on breast cancer. Maybe you don't see how you come across to some people such as myself. It is really starting to look like you are attention seeking , rather than doing any actual advocating. On your page you continue to 'preach to the choir' there. But the only way anything is going to get done is to convert others, who don't quite see things your way. Honestly, I am really worried that you are doing more harm than good. By the time you are done 'advocating', aka getting celebrities' attention, getting 'likes' for your page etc.,Biomarin will probably just pull the drug altogether and it won't be available to any of us with ovca. I am seriously concerned that your whole 'cause' is going to implode and will adversely affect the rest of us with ovca, as far as getting drugs developed, etc. Again, I wish you would not see this as an attack, but as constructive advice that may actually help. You have to be able to se ALL points of view, not just your followers.
ReplyDeleteIt would be great if you could take a few minutes out of your rockstar day and go back to Inspire, and take a minute to thank the HUNDREDS of women there who signed your petition, and helped you get a PARP drug. A drug that they themselves need too, some as much or even more as you.
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