DVT Adventures - 03/30-04/10/2010

So, a little over a month ago, my doctors decided to put me on birth control - due to the fun fact that I was going through menopause at 29 - as a result of my total body radiation and massive amounts of chemotherapy. So, after a month of being on Ocella (the generic version of Yaz), I noticed on the date of my BIG UCAAN event, that my left leg was getting swollen. On the night of my event, I had excruciating pain in my groin and left side of my leg. I wasn't sure what was going on, but like my stubborn, bull headed-Taurus self, I worked through it, and ignored the sign. By Tuesday 03/30, my entire left leg had swollen up (from my foot to my hip) and I was in even more pain. By Tuesday night, I drove myself to a small local hospital - that i was not familiar with- (because the two other hospitals - Los Robles & Ventura County Medical Center) were both packed and told me they could not help me. When I got to the hospital, they admitted me into the ER and took some blood and gave me an ultrasound. I was my usual cheery self - even as I was sitting on a gurney in the middle of the ER, because they had run out of rooms. As I laid on the ultrasound table, the cute lady was giving me my ultrasound and I was cracking jokes the entire time - she was in stitches! When she was finished, I asked her "Did you find something?" and she responded "I can't tell you." Moments later the doctor came to me and told me "You have a DVT, and if it spreads to your lungs it will kill you." I was a little freaked out, because DVT sounded scary and I didn't even know what it was. She quickly told me "Deep Vein Thrombosis - It's a blood clot deep in your leg!" I wasn't quite sure what to think, nor was I sure how I got it. But right away, they admitted me into the hospital and gave me a room. (While in the ER, I met two fabulous EMT students from Ventura College, who were very nice to me, asking questions about my cancer, why I was there, etc. It was nice to talk to people my age, while in the ER. I think it calmed me, because I was nervous about everything going on, while I was unsure of what was wrong with me.

A transporter took me to a room and as I sat in the clean room waiting for the nurse to show up, I wondered if they'd ever give me some pain medication, for the severe pain I was having in my left leg. By the time I got to my room, it was midnight and shortly after my nurse came in. She seemed a little scatter brained, as she pulled a big cart with a computer on it into my room. She looked at me and said "I am here to ask you some questions, many questions - about 100." It took about an hour for the nurse to get through the 100 boring questions, and when she did, I asked again for pain medication - and she disappeared just as fast as she had come in. I was in the hospital (including time in the ER) for 7 hours before anyone gave me medicine for my severe leg pain. Ugh! I was thinking to myself, 'I can't wait to call Dr. P at the COH in the morning and ask him to get me out of this place.' After 2 days there, I was actually in fear of my life, because I noticed the lack of caring and information from the doctors and nurses at this particular hospital. I really thought that if Dr. P hadn't of gotten me transferred out of there, that I would die just from the hospital's neglect! :( Scary!!! The one good thing that happened, was when some friends of mine came to visit me, including Tami L who brought me flowers and snacks and Tam & her mom who brought my mom and I some great In and Out and some beautiful flowers! :) Good thing mom could visit with me often, since I was close enough.

On April Fools day- April 1st,2010 I was transferred by ambulance to The City of Hope. Now, you all know my obsession with bald men, and let me just say that I had another handsome bald man in the back of the ambulance with me, his name was Tom and he was super attentive, funny and really nice. Up front in the driver's seat was Kyle, another handsome EMT. I remember laying in the back of the ambulance laughing it up with the guys and talking up a storm (once again- we see a pattern right?) I watched as my mom waved to me as I laid in the gurney in the fabulous ambulance. She was smiling, because she knew that I was on the right track.

When I did get to the City of Hope, I was beyond relived to be there. I knew that things would be better, the moment I got there. The days at the City of Hope are a little blurred to me, because it was awhile ago. But the time was well spent. Not too many people came to visit me because it is a long drive to get there. But I ate some great food and enjoyed the time with friends who did visit from the hospital, like: Randy, Irene, Dr. Chen, Jeff, Heather & my phlebotomist friends. I learned that while on these blood thinners, I have to not eat as much food with Vitamin K in it, I don't have to limit it completely, I just had to limit it a bit and watch my intake. I learned that I would have to get my blood tested every day to make sure that my INR (International Normalized Ratio), which needs to be between 2.5 and 3.5 before they will let me go home, and once I do go home, they want my INR levels to be between 2.0 and 3.0, and will be changing my Coumadin (Warfarin) dosage often until I am at a regular target INR level.

While I was at each hospital, I was put on a regimen - I would get 140mg of Lovenox shots each day, which if I was lucky would be one shot, but most times it ended up being 2 shots (one shot of 100mg, and another with the remaining 40mg). Now, these shots were just as uncomfortable if not more than the shots that I had to give myself when I was on Neupogen 2 years ago (prior to my stem cell transplant), those were 3mg shots, and I gave myself the shots 3 times a day - not too bad!


I did have some fabulous visitors from CSUN that I met at a CSUN cancer survivor dinner that was put together by ACS and Colleges Against Cancer. They all came equip
with red streamers, a bag of playdoh, cookies, a book, puzzles and more! Zack, ended up decorating my room with Melodi & Amanda. My room was decked out with red streamers and the Relay for Life Logo was up on my bathroom door. Totally fun!!!


The nurses that I met at the City of Hope that week were beyond amazing and I loved moments with each and every one of them, even time with my doctors who visited and CNA's. :) Great time with great new friends, and old ones too!



Thanks to everyone for being awesome!!! I love ya all!!!!

I was finally allowed home on 04/10/2010, I was sad because I had missed the Rise 2 Action conference that I was looking forward to attending in Texas, but was glad to be ok and back home! I had my buddy Jeff come and get me that beautiful Saturday morning. He was handsome and so hilarious - sporting my super cool cap and being a goofcall the entire time! Good thing I had my camera phone in hand to take some great pictures of him that really were priceless!!
But, I was finally back in my own bed, in my house and beyond ready to live life..... or something like it. I was put on some restrictions by my doctor - no far drives, no working of any kind (no stress), and to keep my leg up most of the time and walk a little bit, as tolerable - but not over doing it. I already had the weekend planned out, the next day- Sunday- my best bud Holly and I were attending the Gem & Jewelry show in Santa Monica, where she would push me around in my wheelchair. I was looking forward to it. Every moment, would be an adventure and always is........

The Journey of Change

After a cancer diagnosis, we feel like we've lost our identity, at least I felt that way the first day - when I was diagnosed with Leukemia. I didn't think to myself, what happens next? I didn't wonder how my life was about to change, instead I went with the flow, did what I had to do to survive and beat the cancer! Now, 2 years later and cancer free, I still think about my experience and how it has changed my life. I cannot go back to the way it was - my perfect immune system and the fact that I rarely ever got sick, my amazing job, the friends I knew, my awesome and unbelievable amounts of energy, the path I was on had disappeared and in it's place - a new path was being built. The more years that pass me by, the more and more I realize that my life is new, this road in front of me doesn't look at all how I had imagined it would be, and the stepping stones on my path through life have all changed. No more dreams of being a teacher, no more beading and clay times and business dreams with Shoshie, no more pretty green Toyota Camry with the sunroof screwed on, no more careless dating, no more adventures with bad boy types, no more adventures living in the Antelope Valley.

The fact was, that my priorities had changed in a HUGE way, my goals and passions had shifted, and the once clear, but broken path that I was traveling on had become a colorful bridge of amazing options and chances. Things started happening in my life, and chances became more and more clear and apparent to me. Before all this, I had been the introvert, the girl who stayed with her little circle of friends, and who would have conflicts with everyone else, I wasn't an A+ student, instead I was more of a C, C- student, I was terrified to speak in public and would rather take the F on a project than have to subject myself to speaking in front of the class, I had lots of dreams and desires of where I wanted to go in my life, but as I have said before - I lacked the focus to stay on track...... That was me then. And I had turned into this passionate young woman with big goals and dreams of inspiring others to fight cancer, to spread hope to all I had met, to speak out and share my journey and my battle against cancer with others who had never experienced it and who may never experience it in their lifetime. I became this woman that I never imagined I would be - the woman who would fight for a cause, for a dream and wouldn't stop for any reason. I am passionate about spreading the word, about sharing my journey, about creating an organization that connects cancer survivors with fellow survivors and their families and friends, an organization that fights to make one another strong, to spread Hope, Passion, Inspiration, and Love to those who need it to stay strong. With this journey, and the start of my public speaking, it was all brought to me through my journey with cancer. It was meant to be, and I wouldn't change it for the world.

The truth is, I have changed as a person as a whole. I stopped dating just to date and realized that I needed a man as strong willed and passionate as myself - someone intelligent, funny, with a passion for life and love, with a passion to help others, with goals and drive to do the things that make him happiest. I was done looking for the bad boy types that lacked dreams and inspiration, and I was on to some cool and fabulous adventures with some awesome geeky guys. I have had some time to think about what I want to do with my organization, and what drives me....... Having had cancer, the experience itself drives me to do amazing things. I just won't stop......
Change is scary, it brings NEW possibilities, it brings different ideas and suggestions, it brings eye opening visions and sights, it brings so much and at times it's hard to even fathom everything, every option, every alternative. But this is my journey, and I will enjoy every moment as it comes. Whether it be in dating, in life, at the City of Hope, at Cancer Survivor events, at UCAAN events, in the supermarket, anywhere and everywhere I travel..... I will take in the experience and share what I have learned. This is a Journey Worth Living! And Gosh darn it, I'm Loving Every Minute of IT!!!!! The question is, are you?

Moving on, and Moving Up! Go With Your Dreams!!

As I have learned over the past 3 years, people have very different ways of dealing with cancer. For me, I embrace it and run with it. Recently, on a somewhat routine trip to the City of Hope with my friend Holly, we stopped to grab a bite at a local fast food joint. As we sat there chatting up a storm, which was our usual thing, a handsome bald cop walked in. My mouth dropped, as Holly knew that I had a thing for bald men. As the cop was leaving, I said to him "I love your bald head!" He turned towards me and smiled, and i responded with my little splurge of why "I had cancer, and ever since, I love em baldies!" He pulled up a chair and sat with us at the table and talked with us. He told us how he had 3 fellow officers whose wives all were diagnosed with cancer, or as he phrased it "The C Word". He was so sweet and so gung-ho about helping us promote the event within his police department. So cute! :) Awwww... So, Mister handsome police officer leaves the place and I notice his car is still there after a few minutes. Sure enough he walks back into the restaurant with check in hand and writes out a check. I'd like a ticket please. He says as he hands the check to me. How sweet!!! It's amazing people like him, that brighten my day - he didn't know me, but yet he wrote a check there on the spot to attend the event. Oops! Now you all will know about my bald cop friend. Lol.

So, as I was saying...... Surviving cancer is one thing. Thriving after cancer is a whole other thing. As I am approaching my 2 year stem cell transplant reunion on April 30th, I am looking at all that I have accomplished over this short amount of time. I went from being deathly ill to remission to a relapse and a stem cell transplant, all the while doing some public speaking here and there and working on starting my cancer organization UCAAN. This is where your dreams come into play. You have a choice, as far as what you'd want to do with your life, after this experience - would you like to continue on the path you've been on, or would you choose the road less traveled and decide to do something more, something different, maybe even something you've never even expected yourself to do?! I think it's best to follow your dreams. Cancer can and will change your life. Sometimes it's for the better, and it may take you some time to realize this - but all in all, it's your experience, your journey and your life. "Life's what you make it!" What will you do with yours?

Welcome 2 "The Ultimate Cancer Experience"

Not that the start of my cancer organization, United Cancer Advocacy Action Network isn't exciting enough, but I was recently invited to speak at a local high school in my area. My brother's old high school in fact!

It's public speaking and helping people that really gets me really enthusiastic! The ultimate feeling that you are providing hope to those that need it, or those that may need it in the future is exhilarating! So, I am currently working on the dvd that I will show, while I speak with pictures and music that show my entire cancer experience thus far. The pictures that entail what I have been through, and how much cancer has changed my life in an amazing way.

My suggestion to those of you reading this is to keep in mind - if you've beaten cancer, or known someone who has, or even someone who lost their battle.... we only have this one life to live to we should really LIVE it! Find out how you can help others, through volunteering, or starting a foundation, or speaking publicly. Whatever you decide, follow your heart, do what makes you feel incredible and share your experience! Tell your tale of your Ultimate Cancer Experience!!

This Wonderful Journey Called Life After Cancer

As weird as it sounds to say & hear myself think this, I do enjoy this wonderful journey called life after cancer. I have been through so many experiences in my life, but nothing, and I mean nothing compares to this life, these adventures, these moments that make life truly worth living. Life after cancer, the life of surviving the "statistics", of beating the odds and really living is amazing.

Now I do admit, that there are some sad times that come and go. Like the amazing people I have met in my life after cancer journey, who have lost their lives to this disease. Those people, are part of who I am today. My dad for example - Melanoma got him, when I was very young, and though I don't remember everything about him, I do have the pictures & the stories from my mom about him and his wonderful life. I know that even though I lost him at such a young age, that it gave the realization that I can be strong, I can fight this disease and I can make a difference, no matter how small or big. My friend J who was not only a husband, a father, a friend, a survivor, & an adventuresome man who loves to fly and enjoy his life to the fullest, lost his battle over a year ago, but I still have the wonderful memories of him - how he made me laugh for hours while I got my chemotherapy, how much he talked about his family & people he had met since being diagnosed, how he was inspiring, and loved living his life.

Even the people that I never knew, but that touched my heart in other ways, the celebrities that I know have touched all of our hearts - like Farrah Fawcett, our "Charlie's Angel", Bea Arthur, our "Golden Girl" comedian & actress, & even Patrick Swayze, our "Dirty Dancing" favorite. All of these people left a lasting impression on our hearts & in our minds - even though they are no longer here, they will always be with us in our memories!

Whether you are newly diagnosed, currently relapsed, or finished with treatments & trying to move on, you need to remember that you are not alone, there are others like you, others who have been through what you have, and there's always someone to talk to about things, to talk about life after cancer and to share the experience with. :) Remember that this is your journey, it's up to you how you not only approach dealing with it, but how you find a way to work through it and continue to live & love your life after it. We all deal with this differently, and for me, I find the best way to deal with life after cancer is to live my life, spread my positive energy & thoughts to others with the disease & their families & friends, by inspiring others and spreading awareness.

The journey can go either way, it can be a wonderful one, or it can be a dull one - It's really up to you! Which Cancer Journey Will You Choose??

An Unexpected Meeting

The other day, as I was getting gas at my
local Chevron, I walked outside with change in hand and was stopped by a woman. The first words out of her mouth were: "I know you!" I looked at her with a smile and a look of uncertainty, I didn't recognize her, and couldn't for the life of me figure out who she was. She smiled at me and said "I saw you in the newspaper." I knew just what she was talking about - the local newspaper had written an article about me and my 1st fun-raiser for my organization back in September. I was still confused about who this woman was, but appreciative that she recognized me from that article. We started talking and she told me "I just saw your cancer ribbons on the back of your car and noticed the 'Cancer Sucks' one, I knew it was you!" As we chatted, she soon said to me "I'm Shelly." My eyes immediately lit up and I smiled even bigger. "Shelly L?" I asked her, and the big smile on her face was just enough to confirm that. So, there Shelly & I were, talking in front of the gas pumps about life, and how we were doing, what we were up to and how we were recovering.


Now, so you understand this story, I should give you some background about Shelly. I received an email from her which included her phone # several months back, and she had a similar story to mine, and she really wanted to talk to a fellow survivor that understood. So, I called her that night. We ended up talking for over an hour, about our experiences, and I provided her with my advice on things, my thoughts and encouragement. She is a busy woman, married, 3 teenage kids and cancer to top it all off! I told her about the local Wellness Community and the support group that I attended monthly - The Leukemia & Lymphoma Support group that was designed for survivors and their spouses. I encouraged her to attend, when she was ready, that it was a great group and it's amazing to talk to people with similar cancers, treatments and experiences. What transpired from that conversation was, that I didn't hear from her again, or get the chance to meet her - until recently. :) It was amazing to finally put a face to the voice. I gave her the biggest hug, and told her what I was up to.

The Fun-Raiser in September was a huge success and we had raised more than enough money to pay for a portion of starting up my Non-Profit Organization United Cancer Advocacy Action Network. I told her what I was working on and the future of UCAAN. And then she said something that I was overjoyed to hear: "I can't even begin to tell you how much you helped me Rachel. You helped me so much!" My heart melted, and I was filled with excitement - it was almost like a pure rush of adrenaline. It was nice to hear that when I spoke to her, that I provided her with hope, strength & drive to overcome what she was going through. Shelly continued to tell me how she was progressing, we talked about the medications that we both took - one of which she suffered a brain tumor while taking it and was immediately put on another drug.


She still has more treatments ahead of her, including chemotherapy & possibly radiation, but she knows I will always be here for her - through her journey - to lend an ear, and talk it out. Before I left, I grabbed the UCAAN button off of my shirt and handed it to her. "This is for you. You truly are Surviving & Thriving!" It was awesome to finally meet Shelly after all these months, and to see that she is looking absolutely fabulous and despite the bad treatments & adverse reactions, she is doing an amazing job! Above is a picture of Shelly & I. Truly Surviving & Thriving @ it's Best!

What a Wonderful Life - Cancer Free & Fabulous as can be!

What a wonderful life! Surviving Cancer is a wonderful thing, inspiring others battling cancer is even better, and starting a cancer non-profit is beyond tiring and time consuming..... yet..... very rewarding and worth the effort, exhaustion and almost sleepless nights! Lol. I have been working on getting my cancer non-profit organization up and running for a long time now, and actually, have things coming along nicely.

I know what you may be thinking.... "I want to start a cancer non-profit as well! This should be easy. Non-profit, shouldn't be too hard." Ok wait right there! You must be crazy for even thinking that! Starting and running a cancer non-profit is beyond costly and time consuming, but if you have the will, the drive and the passion - then it just may be what you're looking for!

I am looking forward to helping more and more fellow survivors. I am looking forward to doing more public speaking and spreading more and more cancer awareness. I am looking forward to building this organization that will be - bigger than myself!

So, if you want to start a non-profit, any type.... make sure to look into it. Talk to others who have started one like yours, do all the research, do the business plan, raise the money, and get it going! Good Luck in all your future endeavors! If you'd got the will and strength to beat cancer, you can do anything! Sky diving if you're scared of heights, dancing if you're terribly clumsy, singing in your car when everyone is watching, speaking in front of crowds even when you're too scared to..... You get the point! Just do it!