How a few weeks can change your life
Friday, September 2, 2011 at 3:50PM 
I guess I've gone back and forth on writing this dozens of times by now... gone through all the excuses and the arguments... pros and cons. Do people really want to know this? Reality is that this blog has always been a cross over between my professional and personal life, and recently things have gotten very personal very fast. Some of you know and some of you don't that I have been up and down with cancer for the last 6+ years of life. I was diagnosed with melanoma at 27, and basically I've opened myself up to every experimental treatment out there to control things ever since. For the last 2 years, a pill called plexxikon (now Zelboraf or vemurafenib according to FDA approval it got 2 weeks ago) had things in check. Then... in early July I went in for a routine round of scans and they decided to randomly do a CT of my brain. The 6th of July... "we found 2 small lesions." Life stops...
Originally the next step was cyber knife to remove the tumors and to stay on the drug since it had been working so well. Unfortunately a head MRI reveiled a lot more just a couple of days later. There were actually 6-8 spots, a few of which could not be taken care of with cyber knife. I was pretty quickly yanked off of the clinical trial I'd been on and put on a new drug called Yervoy in the hopes that my own immune system could kick in and start shrinking things. A few days in I started feeling stiffness in my legs, knees and feet. My doctors thought it was just side effects or some kind of withdrawal from the previous treatment. The pain got worse. I developed a dropped foot. Within 2 weeks I'd lost the ability to walk all together, and we discovered a sizeable tumor had developed inside of my spinal cord.
I was hospitalized for a few days at this point and started on daily targeted radiation to my back. What I remember is just wondering how I'd gone from so "normal" to so not so fast. My husband and family got me back home in the hopes that it would help me fight and find a new kind of normal. Unfortunately just a couple of days later I started getting headaches, nausea... the things you never want to feel with all of this going on. I was rushed back to Boston, brought into the ICU and spent the next days heavily medicated while everyone around me tried to figure out if I was going to make it back out of there and how. We discussed every conceivable option that we could think of, and opted to try to get back on plexxikon. Even if it will not stop the cancer completely, we believe that it has slowed it and the second I went off of it the situation started to spiral out of control.
2 weeks ago I was granted permission to get back on the study and I've been faithfully taking my pills ever since with a mix of steroids and other necessary drugs. The headaches have gone away for now. I've regained some clarity. My legs, while I can't really use them have not gotten any worse and I'm in physical therapy with my mother every day to try to regain some motion and control. Yes, I have a wheelchair at my desk that I'm learning to use. Yes, Dade and my mother have to take care of me in ways that I never thought they would, and ways I will never be able to thank them or repay them for. The last 2 months have been filled with emotion, a feeling of deep loss over what has happened, but also hope and most of all love. They again strengthen in me the knowledge that I married the right man. In sickness and in health is something that will never be lost on me.
So where do things go from here? Honestly, we're just not sure. We never saw any of this coming so fast. For now, we wait for my next scans with hope that they come back better than the last and we can seek out that next step. The depression is lifting. I actually left the house a couple of days ago for lunch! Until September 15, our office will officially remain closed to new orders while we continue to make plans for how best to run things, and how best to breathe through all this. We all truly appreciate your support during this time. We're all learning to live again. xoxo
- Rebecca
Reader Comments (19)
Rebecca, I am so so sorry to read your post today. I'm sure that this is a terrifying experience for you and you must have so many emotions right now with the sudden diagnosis.
Thank you for sharing your story with your readers. It takes a special kind of person to be able to put everything out there and I hope that you can feel that people are thinking about you and praying for you and keeping you in their thoughts.
I wish for you that the medication slows down the growths and that you're able to live a normal life, running your business with your husband and family by your side. Please stay strong and don't give up fighting.
Sending you healing thoughts and prayers during this difficult time. Thank you for sharing your journey with us here. Stay strong!
My prayers are with you.
My thoughts and prayers are with you and your family.
Rebecca,
My heart sank reading this. Your courage is unbelieveable, even though you might not feel very brave at the moment. I am so very thankful that you have such wonderful people around you. Stay strong, mentally - and emotionally and I believe that the physical will return. I do believe you were brought into this world to do many great things - your work overseas, for example, is inspiring. And I also don't believe your finished yet. Many thoughts and prayers with you and your family.
That's sad. :( I offer my prayers for you to be strong and have faith in God. Don't give up just yet, the fight's still not over.
Rebecca, I've followed you and your work since we've hired you for our own wedding invitations and now that I'm in the business, I truly respect and admire all you've done with your business and with your life despite your illness. I'm so sorry to hear about what's happened, but I hope it gets better soon! I am thinking of you and sending you happy positive thoughts, especially during your birthday week! :)
Please keep us posted on your progress. Cheering for you from Philly!
Rebecca,
I'm rooting for you! I too have lived with cancer and I know how scary it can be. I hope you are able to take some comfort in the fact that incredible people like you serve as a reminder to all of us to appreciate every moment we have because it's such a special gift.
Please keep us posted in regards to your health. And have a very happy birthday and many more!
Dina
Hello Rebecca,
I was very sorry to read this post. I know that you and your family are doing everything you can to improve your health and extend your life. I truly believe you can overcome this disease. If I may be so bold as to suggest that sometimes conventional medicine doesn't always have the answers. Have you considering trying alternative treatment? I have had some experience with cancer in my own life and I assure you, you have other options that may even cure you. A number of years ago, a family member turned me onto something called the Gerson Therapy. It's an all organic diet that is said to be targeted toward cancer treatment. I've not tried this particular therapy and it is a bit costly but, I've heard good things about it and at the very least you will be contributing to your good health by trying everything within your power to get better.
Here is the link: http://gerson.org/GersonTherapy/gersontherapy.htm
I hope I haven't offended you. That is not my intention, I just feel that if I know something that may help in some way then, it is my moral and ethical obligation to share it.
Wishing you a life time of health and happiness from the bottom of my heart.
rebecca, i followed your blog all through my wedding planning and have always admired your work. after the wedding, when i had put wedding blogs behind me, i somehow found your travel blog and loved reading about your adventures. in fact, i even took a few recommendations from your buenos aires posts! so last week, you popped into my mind a couple times while we ate at la cabrera and shopped for books in el ateneo grand splendid. then i felt compelled to check this blog and found this post. for what it's worth, you are in my thoughts and prayers. i hope you find peace and healing.
Rebecca, I have read your blog ever since you did the (most beautiful) invites for my daughter's wedding. Please, please update your blog to let your readers know how your recent scans went and how you are doing now. Thousands of people are praying for your recovery that you don't even know.
Rebecca, you designed the beautiful invitations, program, menu, and thank you notes for my wedding in 2008, and I have followed your blog ever since. You and your family are in my thoughts and prayers.
Rebecca, it was quite by accident that I stumbled across your blog today and discovered your last post. I bought some crystal branches from you back in the summer of 2009 for my daughter's wedding reception and viewed your blog several times after that. You have very similar taste in home decor and I found many of your posts regarding your home and travels interesting. I was diagnosed with breast cancer in March of 2010 and the rest of the year was spent in and out of surgery and various treatments. I am now on a drug to eliminate all traces of estrogen in my body with the hopes that I will not have a recurrence, but since I had cancer cells in my lymph nodes, I will always be fearful of it coming back, so I can sympathize with your situation. I applaud your bravery and your candor with regard to sharing your current struggles. Any time you can share information among friends, even those that don't know you personally, you are allowing their prayers on your behalf. I will be one of those praying for you and hoping that you can beat this horrible disease and go on to live a long and happy life. God bless you and your family.
Rebecca, you don't know me, nor I you. I stumbled across your blog late last night and I have since been moved by your plight. I'm a believer in miracles. I've personally experienced the Power of God as I watched Him heal my 6 month old son. In a hospital room, where our family gathered, at the request of the doctors, to watch my baby boy take his last breaths suddenly gave way to what every doctor in the room later described as nothing other than a miracle. Ever single doctor in the room said there was no medical reason to explain what happened. His Holiness left a room full of doctors, pale and speechless, as they watched my son awake from a coma, which had been induced by 106.7 temperature that had lasted for nearly 24 hours. A temperature that not only broke and was back to normal in less than 30 minutes but it left his brain without any sign of injury. To God be the Glory. Just a few minutes ago, as I worked cleaning my office, I decided to stream a video from Netflix. I really didn't want to watch what I selected, but something told me to do so. Then that something directed me to stop watching it and to go back to your blog with an appeal for you to watch it. The title is, "Burzynski". If you are not a subscriber, take the free trial. I know this sounds crazy and I feel almost nuts for writing it to you...but something bigger than you and I has instructed me to do so. And how odd that we are both Rebecca's in the same line of work. May the power of the Lord heal your body and may His name be Glorified through you. Amen. And one last instruction is Psalm:126.
Rebecca,
Just a follow up post to check-in with you. I hope you're doing well. Please let us know about your progress. We're all cheering you on!
Hi Rebecca,
We've never met but I have been an admirer and fan of your work and web site for some time. I wanted to reach out to you today to tell you that you are thought of, and that there are many prayers being sent your way. I lost my Mother back in January of this year, and then we lost my father-in-law to liver cancer 2 months later. So I do know a little bit about what you're going through, and just wanted to send you a note expressing my support. Having such a wonderful husband and family is so critical and I am glad that you have them. Keep fighting and know that there are many people praying for you, and keeping you in their thoughts!
Kindest Regards,
Sherri Weese
Rebecca, you have not updated your blog in almost two months, and we are all so concerned. If you can, please give us an update on how you are doing since your last post. There are so many people whose lives you have touched who are waiting anxiously to hear how you are. Many prayers and much love to you and your family.
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