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WEDNESDAY, JANUARY 27, 2016SWEETEST DEVOTION
For years, Briel has used this blog to share her story. Its ups and downs. Its moments of joy and hope; its moments of fear and loss. They meant so much to her, her little victories. It seems only fitting that those who love her should take to this forum to share the conclusion of Briel's brave story. Last night around 5:30 Briel passed away surrounded by her beloved family--exactly what she wanted. Her family will be planning a celebration of her life to be held in Jupiter, FL. Timing is still to be determined, but for those who plan to attend please know it will most likely be in the next couple months. We will share more details as they are determined. In Briel's memory and instead of flowers and gifts, please consider donating to the Wunder Project. Briel dedicated her time to advancing the cause of this important organization. Please donate at the following link: http://www.wunderglofoundation.org/donate/Happy Birthday Mom
With the Nieces in DecaturHappy Hanukkah
Training her puppy
Davis Christmas
A Girl and her Puppy Dancing With the Stars LiveZagarow Christmas
_SWEETEST DEVOTION_
Current Song:
Sweetest Devotion - AdeleI wasn't ready then
I'm ready now
I'm heading straight for you You will only be eternally The one that I belong to The sweetest devotion Hit me like an explosion All of my life I've been frozen The sweetest devotion I knowLove,
Jeremy
Posted by Briel Z.
at 6:12 AM
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FRIDAY, NOVEMBER 27, 2015BE STILL
The last time I wrote to you was June 4. That was almost six months ago. It will be six months on December 4. I am disappointed in myself for holding myself back from the therapeutic outlet that I so desperately need and get from writing. Even more, I am disappointed in myself for not keeping you all up to date on what has been going on over the last six months. For this moment, let's just say it was a rough summer that lingered on far past September 21. Luckily, things have finally settled down over the past couple weeks (knock on wood). My head has finally stopped spinning, at least for the most part, and I feel like I can finally get back to my life. Of course I have six months of getting my life organized ahead of me, but that's OK. Most people reading this blog know how much I love organization. For today I thought I would give you all more of a medical update so you know where I am with the cancer itself. Then over the next few days/weeks I will update you on other things that happened this summer and where we are today. So here we go... This year I have decided to get in the holiday spirit a little early. Like, before Thanksgiving, which is usually a big no-no for me. But why not get in the holiday spirit a little early? In fact, why not wake up every day in some version of the holiday spirit? Happy, hopeful, cheerful, optimistic, a little pep in your step. Many more adjectives. I'll get to the point now. This "holiday spirit every day" thing is something I am trying because it's looking like it may be the beginning of the end. As some of you may know, I have pretty much been off (consistent) treatment since May because of allergic reactions to the chemo or my blood numbers have been off (primarily low platelets and high bilirubin). Most chemotherapies for my disease are toxic to the liver, so between the treatment and the cancer, my liver just can't take any more. The doctors said if I continued with treatment, the chemo would kill me faster than the cancer. Thanks, but no thanks. So we decided to completely step away from treatment and instead focus on my quality of life. No treatment should mean I feel pretty good for a while, at least until the cancer really starts to take over. It was very difficult to make the decision to stop treating the cancer, but we found the silver lining, that Little Victory. I have had 30 amazing years and whatever time I have left, I want to enjoy it, not spend days in bed from chemo that isn't even helping. For the first time in a long time we actually felt relieved. Maybe we'd get to live a normal life for a little, or a long, while. I was going to get all my weekends back and maybe enough energy to actually go DO stuff. New house moving day was coming up quickly - I was so excited to get started with decorating and turning our house into a home. Unfortunately our relief was short lived because around the time we made the final decision not to treat, I was in the hospital with what we would later find out is a chronic blood infection that quickly turns to sepsis and even put me in septic shock once. These infections can come on any time and go from 0 to 60 very quickly. Once my fever went from 99 to 102 in twenty minutes. I have needed an ambulance twice and my highest fever (when I was in shock) was 105. Overall, in the last four months I have been hospitalized seven times, usually for a week. My latest episode was a couple weeks ago and with this came the time to make more difficult decisions, which brings us to my most current medical status update: After a lot of discussion and weighing our options, Jeremy and I (and my parents) decided it's time for Hospice. I know that word sounds scary, like death is imminent, but that's not how it is at all. We are starting with Home Hospice, which exists to make things easier for us with tasks like managing and delivering my prescriptions, and providing medical equipment for our home as needed. I have been assigned an awesome nurse, Jackie (Nurse Jackie!), who comes once a week to check on everything and is available (along with on call nurse for nights/weekends) to come more frequently if I am having issues that can be managed at home. Jackie's biggest role is overseeing my at-home IV antibiotics, which I will take indefinitely. It seems that every time I am discharged from the hospital and put on oral medication, I am symptomatic and back in the ER again within days. Clearly the oral versions of the antibiotics are just not strong enough, thus the switch to IV all the time. The important medications I am on right now are the IV antibiotic, which Jeremy and my Mom administer three times a day, and an oral anti-fungal intervention (my port got infected and had to be removed, so now I use a midline in my arm). Home Hospice allows me to be at home for almost all my care so I can focus on my goals for quality of life, which all center around spending as much time as possible with family and friends. Eventually my body will stop responding to the antibiotics available to me for my blood infection and when that time comes I will take up residence at the Hospice center until my timecomes.
We have no idea when this will be - it's up to the antibiotics (supposedly there are some others we can try if my body becomes resistant to the ones I am on now). Could be a week from now, could be six months from now. As long as they are working, I feel better than I have in a long time, both physically and mentally. Don't get me wrong - there are plenty of things I could complain about, and I do to my therapist, but this isn't he time or place. The most important thing is that I am enjoying this time with my family and friends, and my energy/stamina level is allowing me to make it through a pretty full day. The keys to staying strong and sane (and not scared out of my mind) are to take it one day at a time, listen to my body and rest when it's time to rest, and not think too much about the scary stuff in the future that I have no control over. It's time to focus on the fun stuff I can enjoy right now. That's why every day when I wake up, I decide I am going to be in that day's holiday spirit. Happy, hopeful, cheerful, optimistic, a little pep in my step. Many more adjectives. Sometimes I will need to stop and take a rest and sometimes I will cry, but only because I want more time. You know, FOMO. The important part is that I cry a little and then get back to the moment. I want to savor every single moment and that's exactly what I am going to do. I refuse to admit defeat in this situation. The truth is, I already won. I promise it won't be long before you hear from me again. In the cards you ALL sent me for my birthday (almost 300 - amazing), many people let me know how much they enjoy reading my blog and how much it has helped them in their lives. It is an honor to write for you, and it means the world to know that my experience, and the things I write and share have helped people in any way. The only way I know to thank you is to keep writing, so that's exactly what I'm going to do for as longas I possibly can.
XO
BZ
Current Song:
Be Still - The Killers Thank you @courtcfarrell <3 Be still, wild and young, Don't break character, Long may your innocence reign, Like shells on the shore, And may your limits be unknown, May your efforts be your own, If you ever feel you can't take it anymore, You've got a lot of heart. Is this real or just a dream? Rise up like the sun, Labor 'till the work is done.Posted by Briel Z.
at 3:21 PM
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THURSDAY, JUNE 4, 2015TWO STEPS BACK
The past eight months have felt like a huge step forward. Yes, there have beenchallenges and cancer has still been a very present part of my life, but somehow it seemed to take a back seat. The chemo regimen I have been on has kept my disease stable and caused pretty minimal side effects such as some fatigue, bathroom issues and occasional nausea. Honestly, one of the worst parts about it has been the biweekly visits to the hospital to see the doctor and for my infusions. I hate going, I hate waiting, I hate the in-your-face reminder that I'm sick. I have found most of the daily hardship to be more personal things and feelings like grieving the loss of my old life (yes, still), social anxiety, self esteem and self confidence, dealing with weight gain, and just generally trying to adjust to a new normal, which has been tough, but lately has felt in the realm of doable. I refer to it as dealing with the fallout from the cancer - but that's another story for another day. Anyway, it isn't always easy, but over the past eight months I have been trying to create a new normal and keep a positive attitude despite these challenges. I'm not where I wish I was, I still have a lot of work to do, but I have to say I am in the best place I have been since my diagnosis. Things are hard, but generally speaking life is good. One step forward. These positive eight months I refer to generally started post-radiation in October when we finally made our move to Atlanta. Since then we have been experiencing the positives we hoped we would by making the big transition down south. Life is slower, expectations are lower, and we feel like we actually have time to stop, take a deep breath and appreciate the life we have. A lot of the fun has been in the little things - driving cars, trying new restaurants, exploring parks, hanging out with friends we missed while living in NYC. Making a new friend who has been awesomely supportive even though we have only known each other a few months. We have gotten to spend more time with Jeremy's family, which was long overdue, and even make a few trips up to the cabin in Blue Ridge. Me and my new car, a Honda CRV Our apartment, living room shot Our apartment, master bedroom shot Me and my new wonderful friend, Molly A lot of my time over the past eight months has been spent on mundane tasks and activities that I looked forward to finding easier once we moved to Atlanta. Things like connecting with a yoga studio, finding a nail salon, going grocery shopping in an actual grocery store and cooking meals in a spacious kitchen. I know it seems silly because in theory relaxing and resting should be the same no matter where you are, but it is not. In Atlanta everything is just more low key and mellow, and less on edge, so having restful days feels more acceptable. Hanging out at home is fine because there aren't a million other things you "should" be doing outside your door. I can sit by the pool if I want, or not. I can watch something on Netflix and not feel guilty like I should be at a museum or something. It's just easy and simple and guilt-free. Of course the most rewarding part of the last eight months has been finding and bringing home our perfect fur baby, Gemma. We are so in love with her - it is hard to express with words. Jeremy says I am guilty of treating her too much like a human, like a real daughter, but I just can't help myself. Even when she has done something so bad or frustrating or annoying, I still just love her and want her to give me puppy kisses. Even when she has an accident and I am picking up after her, or when I have to take her outside in the rain, I don't mind because I love taking care of her and nurturing her. Gemma is such a great dog and is truly excelling in puppy school. For the most part she is very well behaved and is great with following commands. She is very active and energetic - loves to play and go for long walks and be with other dogs. Jeremy took her on her first hike up at the cabin last weekend and she did awesome. Gemma is also very loving - she sleeps close to me (or on top of me) on the couch during the day when we are watching a movie. She loves togetherness. It must be the herding mentality of a Shepherd. She follows me around the apartment and when Jeremy is home she prefers when we are all in the same room. Gemma is also a complete ham. She is beautiful, everyone tells her she is beautiful and she milks it for all it's worth. She wants everyone to rub her belly. I could go on and on about her (as if I haven't already), but I will stop here and instead share a few photos... Being a good girl at the vet Dressed and ready for her first hike Calais and me at Los Suenos The other major highlight of the past eight months was our recent family vacation to Costa Rica. Since getting sick my priority in life is going on adventures, making memories and spending as much time as possible with the people I love. Our trip to Costa Rica was exactly that. My parents, Calais, Jeremy and me were there for a full week and had the best time. We did some adventure activities like hikes, zip lining and white water rafting, and we also relaxed at a beautiful resort, alternating between dips in the pool and reading in the sun on lounge chairs with pool-side service. The food was amazing, both at the local spots that our guide took us to and at the Los Suenos resort where we stayed most of the time. I think I ate some of the best steak and chicken and rice I've ever had in my life on this trip. Anyway, if you are looking for a vacation that balances adventure and relaxation, let me know and I am happy to provide you with all the details and recommendations from our trip, especially our guide who was outstanding. It was exactly the type of trip I was looking for and the memories I made with my family are so special to me. We just had thebest time.
La Paz Waterfall outside San Jose Family white water rafting adventure. With all of this goodness and positivity, you are probably wondering why this post is called _Two Steps Back_. It's because over the past eight months I have felt like I took a huge step forward in so many ways, many of which I described above. All these things that I listed have made me happier than I have been in a long time and I was finally starting to feel like life could be good again if I just let it. Like if I would allow myself to be happy I can actually be happy. But I guess I always knew it was only a matter of time before bad news would come knocking on my door and last week that's exactly what happened. One step forward, two steps back. Way back. I started thinking something was up about three weeks ago. Suddenly the pain in my back and my side got significantly worse. I was using my heating pad all the time and watching the clock until I could take another dose of pain medication. My next scan was coming up on May 26 and I just had a bad feeling about it. My gut feeling was confirmed when the doctor walked in with the results last Thursday and said, "It is not good news." In a nutshell, everything in my liver has grown, not a lot, but enough to confirm that the cancer is progressing. Also confirming progression of the cancer are the spots on my lungs that in the past weren't necessarily cancer. Those spots grew, not only confirming that they are cancer that has spread to my lungs, but that it too is on a path of growth. Important to note is that all this growth and progression happened while I was on treatment, which means the magic regimen that was keeping things stable for so long has stopped working. If all that doesn't qualify as two steps back, then I'm not sure what does. What happens now? On June 11 I will start a new chemo regimen that will hopefully get me back on a path to stability. The regimen is actually the chemo I had when I was first diagnosed. Called Fulfox, it is administered at the infusion center through my port (Oxaliplatin and Leucovorin) and also through the bottle that I wear home in a fanny pack for two days (5-FU). Most people probably don't remember, but the last time I had Oxaliplatin I had a major allergic reaction to it, so in order for me to have it now they will first have to desensitize me to the drug. This is basically done by loading me up on Benadryl and then administering what is usually a two hour infusion over six hours the first time I get it. Then each time I get it the infusion will be over less and less time, and hopefully I will not have another reaction like I did last time. Between that, all the premeds they give you and hydration, there are some very long days at the infusion center in my future. The fanny pack is coming back! This photo is from last summer, but is an example of the look I will be rocking in the near future. As for side effects, they are going to go over all that with me again, but from what I remember it isn't fun. I remember feeling decent at first and having a delayed reaction around the time I am unhooked from the bottle, so 48 hours later. I know the Oxaliplatin is the one that changes your taste buds and also causes neuropathy, which is tingling in my hands and feet, and an extreme cold sensitivity (no eating ice cream or putting my hand in the freezer!). Then I think it's the usual suspects - tired, nauseous, bathroom issues, loss of appetite, hair thinning (but not hair loss). If I remember correctly there are a few days of feeling really crummy and then there is a good week in there before the next treatment. But this is all based on my memory of this regimen. It might be completely different this time. I'll just have to wait and see. So how am I feeling about all of this? I am very sad and upset that the disease has progressed the way it has, but I can't say I'm surprised. Bottom line: it's a sad reminder of my situation. It's only a matter of time before this disease progresses further and further until it takes me away. I guess the "good" news is that it all seems to be happening very slowly and every day is another day spent trying to find a cure. Maybe I'll get lucky and live long enough to be part of that. I think because I am going back to my first chemo regimen it is also bringing back a lot of memories of the beginning of my cancer experience. It sort of feels like we are back to square one in that way. I think the worst part of it all is that like I said above, I really had taken a big step forward, a big step, maybe even a few steps, but this feels like two steps way back that completely bypassall of my progress.
I think that's the challenge I need to give myself - do not destroy all the progress I have made. Don't let this be two steps back. Instead let it be a river that I need to figure out how to cross so I can get to the other side and continue down my path of progress. In the meantime, follow all the cliches. Live one day at a time and do so according to my own rule book. Spend as much time as I can with the people I love. Chase adventure and make as many memories as possible along the way. Lean on my amazing support system. Create a new normal that is normal for me. I think it's very important that I continue to work on myself (I recently started seeing a new therapist). I think dealing with some of the personal issues that I listed in the beginning of this post can only be a stress reliever and make it more possible for me to enjoy my days. Finally, I need to follow the advice of my husband and not worry so much about everything. Focus on healing and everything else will figure itself out. And of course, remember that I am infinite. Don't be scared because no matter what happens, Iam infinite.
A very profound teabag My little family. We are in it together. Also, I know it's June, but I am making a mid-year resolution to write more blog posts. It's therapeutic and hopefully helps other people going through similar situations. And let's be honest, waiting so long in between yields posts that are way too long and no one has the time (or probably the desire) to read all this at once. If you did make it to the end of this post, thank you for reading and thank you for rooting for me. Please don't stop. It helps me keep going and right now I could use a little boost!XO
BZ
Current Song:
David Guetta feat. Sia - Bang My Head Against the Wall _I was bound, was tired_ _Hadn't seen a light so long_ _Thought I lost my fight_ _Couldn't find my way back home_ _And I found the light stepping out of me_ _I was bound, and tired_ _Waiting for daylight_ _Bang my head against the wall_ _Though I feel light headed, now I know I will not fall_ _I will rise above it all_ _Found what I was searching for_ _Though I feel light headed_ _I should have failed, and nailed the floor_ _Instead I rose above it all_ _When you think you're giving up_ _Just know, you might think you're dying but you won't_ _And you feel the love stepping out of you_ _But when you think of giving up, don't_ _Bang your head against the wall_ _You may feel light headed, but you won't crawl, no, you won't fall_ _You will rise above it all_ _You'll find what you're searching for_ _And you may feel light headed_ _You think you're gonna hit the floor_ _Instead you rise above it all__
_
_
_
Posted by Briel Z.
at 7:47 AM
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FRIDAY, APRIL 3, 2015 OUR ANGEL, DONNA MAE Cancer is everywhere. I'm sure it was everywhere before I was diagnosed, but it seems that since I have been sick it has been so much more present and happening to so many people who I know. That's right: happening to people. There are certain people who you might think "ask for it." People such as smokers who don't take care of themselves the way they should. I can't speak for those people. To me, their disease is their business and not something I choose to address. I speak for the population of people who have done everything as right as they possibly could. For those people, cancer is something that happens to you. You don't ask for it. You don't want it. It's not right or fair or deserved. It happens to you the same way getting out of bed in the morning happens to you and there's not a damn thing you can do about it. It is with a heavy heart and thoughtful mind that I pay tribute to a very special woman. A woman who was doing everything right. A woman to whom cancer just happened overnight. Poof, like that, out of thin air. A woman who couldn't be less deserving of such a tragedy. Cancer happened that quickly and took her away that quickly, and no matter how many times I go through it in my head, the math just doesn't add up. Let's face it. With cancer, it rarely does. Donna Mae Boshoven was exactly who everyone wants to be at 84 years old. In fact, in writing about Donna it seems more appropriate to say 84 years young. Living in Florida, Donna loved being outdoors, playing tennis or golf, or even just soaking up the sun. She fiercely loved her family, and was especially close with her children and grandchildren, including a great granddaughter. I knew Donna for a few years, as she is the Mother of my Mother's best friend, Lynda. In the time that I knew Donna, I was always so impressed by her zest for life, even at 84 years young. She kept up with her beauty regimen, a stunning blonde always perfectly manicured and batting those beautiful, long eyelashes. Donna had an active social life and worked a job she loved as a Concierge at the Jupiter Beach Resort. She had a fun-loving dog Eloise, who followed her around just as any baby would her mother. And what a Mother Donna was, still is. I remember being together one day with my Mom, Lynda and Donna, and thinking that that's the relationship I always want to have with my Mother. They were just so close, like two girlfriends, but that sacred bond of Mother and Daughter always shone through. If I had to describe Donna in one sentence I would say: _Donna was a woman always in the prime of her life, who lived every day as though life would go on forever, the definition of infinite. __
_ It was mid-February-ish when we got the news that cancer happened to Donna for the second time in her life. Already a breast cancer survivor many years ago, it was now found in her pancreas, had spread to her liver, and was quickly on the move to other vital organs. Donna and her family sought opinions from several doctors including one of my doctors and MSKCC. There was some hope, but treatment needed to start right away. Donna had a port placed to begin chemotherapy treatment, but it was only a matter of days after that surgery that her family found out the cancer had already spread too much, too far, too fast. On March 27, 2015 Donna passed peacefully surrounded by her family. Now she is an Angel watching over those she loves. It is so important that we remember the mark Donna left on this world. As a Mother, a Grandmother, a Friend, a cancer survivor and so much more. Donna did so many things in her life and a wonderful life it was. It is imperative that we not only remember, but live by her example. Donna's positive outlook on life, her hunger for longevity, and her courage and bravery in the face of adversity make her someone we should all aspire to be more like, cancer or not. If we can remember Donna for all the roles she played in this world, and carry on with her positivity and strength, then we keep her alive in our hearts and she is infinite. That is my wish for Donna, for all the people to whom cancer has happened, for all the people who fight. We win, there is no lose, when we carry on and when we leave behind something for our loved ones to live for. When we are infinite.XO
BZ
I have used this first excerpt before, but it reminds me so much of Donna and it has such a wonderful message. I must share it again..._We are Infinite;_
Right now, these moments are not stories. This is happening. I am here and I am looking at her. And she is so beautiful. I can see it. This one moment when you know you're not a sad story. You are alive. And as you stand up and see the lights on buildings and everything that makes you wonder. And you are listening to that song on that drive with the people you love most in this world. And in this moment, I swear....weare infinite.
_- Perks of Being a Wallflower _by Stephen Chbosky_Celebrate Life:_
I believe in a life of celebration. I believe that the world we wake up to every day is filled to the brim with deep, aching love, and also with hatred and sadness. And I know which one of those I want to in in the end. I want to celebrate in the face of despair, dance when all we see on the horizon is doom. I know that Death knocks at our doors and comes far too early for far too many of us, but when he comes for me, I want to be full-tilt, wide-open, caught in the very act of life. I think that's what we're here for, not for a passive peaceful life, but to stand up in the face of all that lacks peace and demand more. _-Cold Tangerines _by Shauna Niequist_
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Posted by Briel Z.
at 8:56 AM
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FRIDAY, MARCH 13, 2015SO MUCH CHANGE
Sometimes you just need a break. When dealing with a challenge, the best thing to do can be to step away from everything and gather yourself. Over the past six months I have been doing a lot of gathering. Jeremy and I have experienced so much change recently and truth be told, it has been difficult to keep up with, thus my lack of reporting here on my blog. I am finally feeling gathered, settled, comfortable with where things are in my life, so it seems like the perfect time to share with everyone who has followed my story from thebeginning.
The biggest change we have experienced has been our big move to Atlanta. We moved down from NYC at the end of October, so about 5 months ago. We made the move for a lot of reasons, but the main driver was that we were so ready to move on to the next step in our lives. Ever since I was diagnosed, life, all our hopes and dreams, seemed to be on pause. Pressing play was long overdue, so we went for it and made the move we had been planning to move since before I got sick. We are so happy in Atlanta. Our apartment is much bigger, we are closer to both of our families, the weather is much more tolerable, and life in general moves at a slower and more relaxing pace. And it’s only going to get better from here as summer approaches andpool season begins!
A huge change is that two weeks ago we became dog parents to a beautiful Mini Australian Shepherd, Gemma. She is so cute and wonderful. A lot of work, but a responsibility we have been craving for a long time, kind of like having a child. Other than keeping us up at night (literally), she is a very well behaved little girl and just the perfect addition to our family. We are also looking forward to the weather warming up for a much longer spring and summer than we had in NYC. Soon we will begin discussing next steps for housing and family planning. We also have a family trip to Costa Rica planned for April. In general, we have so much to look forward to and for the first time since I have been sick, I actually feel like I am giving myself permission to be happy aboutthings.
For a long time I think I avoided happiness because I didn’t want to feel the pain of being let down if things didn’t work out. I am learning that it’s healthy to be happy and excited about things, and if they don’t work out it’s not the end of the world. It just might be time to find something else to be happy about. I think I am doing better with planning and getting excited about future/long term plans (around a 6 month time frame). Where I need to improve is the day-to-day. I need to find activities or hobbies that make me happy and excited on a day-to-day basis, the way most people have a job. These days I spend my time doing yoga, going grocery shopping, cooking and just taking care of stuff around the house. I think a next big step will be for me to find activities and build upon my routine so that I have more of a life. More to live for on a dailybasis.
Most importantly, I need to set myself up for success and remember that having a life doesn’t have to be an every single day thing. Taking breaks and having a bad day every now and then is OK – it’s about the big picture and finding a balance that makes me comfortable. It’s about making progress and rebuilding my life over time. Moving to Atlanta was a huge step in the right direction, and now having a puppy is a big life goal achieved. I should be proud of myself for taking those steps in the right direction. Even if it’s two steps forward, one step back. It’s the two steps forward that I need tofocus on.
Among all this change I’m sure you’re wondering how things are going health-wise. I am happy to report that things are stable. My last scan at the end of January was a “no news is good news” scenario. Nothing shrunk or went away, but nothing grew and nothing new showed up, so we have that to be thankful for. My treatment regimen has remained the same since I finished radiation back in September. I go in for chemo every other week, and I do oral chemo for a week every other week as well. The drugs that I am on now don’t have too many side effects so for the most part I am able to keep up with my daily activities/responsibilities. Some days I am really tired and a need a rest, but that is to be expected. Incorporating my health into all this change lately has been a big transition. I am now being treated at Emory University, but my doctors at MSKCC are still completely in the loop. I plan to go up to NYC for a 6-month check-up in June, so it will be nice to check in with my team up there and make sure we’re all on the same page. I like my doctors down in Atlanta, but as can be expected it has been a lot to get used to as well. A whole new team of people, a new system/process on treatment days, understanding a new way of doing things in an “urgent care” situation, etc. Even though it has been a challenge to transition, I still think we did the right thing coming down here. Treating cancer isn’t just about treating the disease - it’s about treating the whole person. As a person I had to get out of NYC. It was time to move on and I am so glad. So on the whole, I am very proud of Jeremy and me for taking the steps we have taken lately despite my disease. The bottom line is that you can’t let challenges, cancer or otherwise, hold you back from having the life you want to have. The challenges may make it more complicated and difficult to get what you want, but in the end it is worth it to know you are in control of your destiny. Not something else. Cancer may be in charge of my health, but it is not in charge of how I cope. Today I can check all my boxes. I am married to the one I love. I moved to the city where I wanted to live. I got my puppy dog child. I have a trip to Costa Rica in my calendar. I get to spend time with my family and friends (close and far). I don’t know what tomorrow holds, but today I am as happy as I could possibly be, and that’s good enough for me.XO
BZ
Posted by Briel Z.
at 7:12 AM
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TUESDAY, OCTOBER 7, 2014 RADIATION COMPLETE, AND MORE Before I give my long winded update on how everything went with radiation, I want to give a quick shout-out to my girlfriends. I am so lucky to have these ladies in my life. You all have been so supportive and generous since the day I was diagnosed - always being so patient, kind and flexible. I have the best friends in the world and I just want you all to know how much I appreciate you. Below is a picture of us taken at a belated birthday party they all threw for me at the end of August. Some girls couldn't make it and aren't pictured, but they are no less important or loved. Those of you who have been there for me, you know who you are, and words just cannot express how grateful I am to have you in my life. So, a medical update. A couple posts ago I updated you on my medical status and the big decision that I was faced with: surgery or chemo/radiation. The decision ended up being chemo/radiation and was started immediately with a new chemo regimen. Then two weeks ago I started my radiation therapy, which finished up this past Friday. I received highly targeted radiation to two different regions of my body. I underwent six treatment sessions, each region receiving three high doses of radiation. The first three treatments were for my swollen lymph nodes that press up against my spine and the nerve endings in that area (thus the back pain I had been having). The second three treatments were for two large tumors located on the top portion of my liver. The goal of the radiation treatments was and still is to dramatically shrink, if not eliminate, the cancer in theseregions of my body.
Don't get too excited. As hopeful as we are that the radiation is successful in reducing/eliminating the cancer cells that we can see on a scan, we know that there are still cancer cells that we can't see. That's what the chemotherapy is for - to systemically treat the cancer that we can't see. I am on a break from chemo now so that the radiation has time to work and we can clearly see the results of that therapy. Radiation always has a delayed effect, so we are giving it about six weeks before taking any next steps, chemotherapy or otherwise. My next scan is the week before Thanksgiving. This is when we will find out how well the radiation worked and what the plan is for continued chemotherapy. I am a little nervous to be going so long without chemotherapy given what happened after my last "break" (tumor growth), but I trust the doctors and understand why I need to take a break from chemo to give the radiation a chance to work. Before the radiation therapy began there was a simulation session, just like last time. In the simulation session they made a mold of the upper back part of my body, which I laid in for each treatment to make sure I was always in the exact same position. They also gave me eight little dot tattoos on my stomach and sides to aid in the alignment of the lasers. The treatments themselves were about 45 minutes each and were pretty uneventful. I just laid on a table and let the machines to their thing while listening to my preferred Pandora station (GavinDeGraw).
The most important parts of the treatments is that you are in the exact same position every time and that you don't move at all while the lasers are doing their thing. One thing that was tough about this was that I had to hold my arms over my head the whole time as part of my mold/positioning. This may sound like no big deal, but keeping your arms overhead for that long is very uncomfortable and painful. It was always a relief when the therapist came into the room at the end of a session and said I could take my arms down! The other tough part was that I had to wear this compression belt around my waist that they majorly tightened for the duration of each session to keep my body from moving as much as possible from my breathing. Imagine a blood pressure cuff tightening around your arm to the point of it being very uncomfortable, borderline painful. This was the same idea, exceptaround my waist.
Side effect wise, radiation was much easier this time around. The main side effects I have experienced so far is the extreme fatigue and increased back pain (said to get worse before it gets better). The treatment has made me very tired - a kind of tired that I can't put into words. As a result I haven't made a lot of plans lately, opting instead to rest at home and get a lot of sleep, with a yoga class thrown in here and there for good measure. Like the benefits of radiation, the side effects are known to linger for a few weeks after the treatment, so the fatigue and back pain may last another couple weeks. Another side effect that I have been warned against is a delayed skin reaction. The doctor says I will get a really bad "sunburn" and possibly even blistering on my right side where they radiated my liver since the liver is so close to the surface of the skin. I have special creams that I have already started using to minimize this, so hopefully it isn't so bad. So that's where I am right now. I hope the side effects of radiation don't last too long so that I am able to get some feel good time while on a break from chemo. The weekend before radiation started I had a "bonus weekend" where I had no chemo and hadn't started the radiation yet, so I had a fun outing with friends I haven't seen in a while. Below is a photo of us hanging out, just enjoying being together. As I move forward with all of these treatments and think about what the future may hold, I am reminded to take it one day at a time and celebrate even the littlest victories. This past Friday, for instance, I wasn't feeling well, but I went to Bloomingdale's to help Calais find a new pair of jeans. There was nothing noteworthy about this outing. Just two sisters bonding over denim and girl talk. But it was still special because it was quality time that I got to have with Calais just being normal. I want to challenge myself to celebrate the normal, regular, even mundane aspects of life because normal is what Imiss the most.
Before I close, I have one last photo to share. Yesterday we celebrated my new niece, Parker's, one month birthday. She is so cute and one of the many reasons I must keep my chin up and keep fighting. So I can see this little girl grow up and so I can hold her hand as she wanders through life, trying to figure it out just like the restof us.
XO
BZ
Current Song:
Phillip Phillips - Raging Fire _You know time will give and time will take_ _All the memories made will wash away_ _Even though we've changed, I'm still here with you_ _If you listen close, you'll hear the sound_ _Of all the ghosts that bring us down_ _Hold on to what makes you feel_ _Don't let go, it's what makes you real__
_ _If the flame goes out tonight_ _Yeah, we'll live until we die__
_ _So come out, come out, come out_ _Won't you turn my soul into a raging fire?_ _Come out, come out, come out_ _'Til we lose control into a raging fire__
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Posted by Briel Z.
at 1:52 PM
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MONDAY, SEPTEMBER 15, 2014HE'S STILL HERE
_This Thursday, 9/18, marks the one year anniversary of the passing of my friend, Jim, who also had stage 4 colon cancer. His girlfriend, Amy, asked me to write a piece about him to commemorate one year since his passing. I share that piece with you here and hope it gives you a small look at how wonderful a person Jim was. Is. Because he's stillhere. _
_____________________________________________________________________ I actually didn't know Jim very well. I didn't know him nearly as long as I wish I had known him. But the things I did get to know, I loved. In another life, if we had the opportunity to meet earlier and know each other longer, I believe we would have been great, greatfriends.
The first time I met Jim we had a coffee date that was only supposed to last an hour or so. We lost track of time and talked for so long that I ran completely late for dinner reservations with my husband, Jeremy. I knew that day that I had made an incredible new friend. I learned all about Jim during that coffee date and it turned out we had a lot in common. We were born only 5 days apart. We bonded over a shared love of the Dave Matthews Band and all things laced with sugar. We talked about our close-knit families. Jim told me all about his undeniable love for Amy and I spilled the details about Jeremy's and my recent wedding. It felt like every time one of us said something, the other person immediately responded, "Oh my gosh, me too!" and then countered with a similar story or anecdote. We let the conversation be normal for as long as possible, but eventually turned to the thing that brought us together in the first place. This terrible club that we both joined only a few months apart. The cancer club. The stage 4 colon cancer club. We exchanged diagnosis stories, doctor stories, urgent care stories, ileostomy stories. Some horror stories, some sort-of-funny stories. I was about to get a hepatic pump and Jim eased my mind about what that meant. Jim and I stayed in touch regularly after that day. We checked on each other after chemo. We visited each other at the hospital. We had bonded on the surface through shared interests and we sealed our fate as forever friends because we got each other on a level that no one else did. Not our parents. Not Amy and Jeremy. Not our friends. We agreed that we both had the most amazing support systems, which we very quickly and essentially became a part of for each other. Now Jim is gone and I am still here. It is incredibly difficult to reconcile this fact in my mind. Why did he have to go and why do I still have to be here, without my friend, who really understood me, to remind me that everything will be ok? To make me feel like maybe things aren't so bad. That's what Jim did for me. He helped me find the "good" in having cancer. He helped make it not so bad. I found out about Jim's passing while I was on vacation in California. Amy called and shared the news. We cried on the phone together, and right then and there promised to continue to be there for each other, for Jim. Losing Jim as a physical being is an incredibly difficult thing to accept, but I have learned through my acceptance that he is still here in so many ways. I can still go back and read our text messages, telling each other what we needed to hear. I can still hear us talking about getting tattoos, mine an infinity sign and his a MSKCC symbol. I can still feel him in my heart, being my friend from the beyond. And I can feel my new friend, Amy, holding my hand, a gift Jim gave to me before hewent.
Like Jim, someday cancer will take me away. I know that the most important thing to people like us is that we leave something behind. That we physically go, but that the people we love and leave behind can still remember us, feel us, tell stories about us, let us live beyond our physical selves. I promise Jim that I will do this for him for as long as I live, and as long as I live I will remember that maybe having cancer doesn't have to be the worst thing, because that'swhat he told me.
Jim is still here. We still celebrate our birthdays 5 days apart. He still loves the Dave Matthews Band and all things laced with sugar. Jim is a beacon of strength. A guardian angel. My friendforever.
XO
BZ
Current Song:
Dave Matthews Band - Two Step_
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_Celebrate we will, _ _Because life is short, but sweet for certain._ _We're climbing two by two to be sure these days continue,_ _The things we cannot change. __
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_Celebrate, you and me, climbing,_ _Two by two, to be sure these days continue,_ _These things we cannot change._Posted by Briel Z.
at 1:00 PM
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