Thursday, July 29, 2010

Got Issues? Got Money?

After cancer, most if not all of us are faced with the inevitable costs of side effects from the treatment. It amazes me how the treatments and "cocktails" alone have such a negative and positive impact on our lives.

I remember the day when I was getting ready for my stem cell transplant and had to see a Radiologist. I recall him telling me that although the radiation would save my life and kill the cancer that I would also have some high chances of getting some other cancers because of the treatment. "You can get GI, breast, cervical, ovarian and lung cancer because of these treatments...." He said to me with a stern look. As I looked at him I thought to myself "What other option do I have? This is it." So I took the radiation.

For me, I wasn't told about the many other fun side effects of the radiation and chemotherapy treatments that I endured..... The early menopause, the loss of dental enamel, the bone loss, herniated discs, memory loss, skin problems, edema & Lyphadema (swelling), speech problems, etc. The list really does go on, I just can't remember them all right now. :) Lol. I was however warned that I would be infertile and wasn't given a chance to save my eggs, so there they went with my fertility in a boat in my sea of chemo.....

But with the fabulous and countless issues that I have succumb to because of my cancer, I have realized that not enough is covered by my insurance let alone other insurances. These treatments that are meant to save our lives, in turn give us more problems than we started out with. But the truth of the matter is, I wouldn't be here today if I hadn't gone through those treatments that gave me those side effects. So really, it's not a big deal in my eyes. Then it comes to the bucks.... Cancer is not only a horrible disease but it's also a financial burden. I'll give you some examples of my treatments, what they have caused and what I have had the pleasure of dealing with...

1.) The total body irradiation that I went through prior to my stem cell transplant not only gave me "radiation burn" but it also gave me another chance at life. On top of that, it gave me some memory loss and brain problems. I ended up getting tested by a neuro-psychologist type and after 8 grueling hours of brain games and tests, we found out that my learning skills were considerably slower and some areas I was low average, and the rest i was average. This issue caused me to forget conversations I was having, made me unable to remember things that were discussed recently, and I started having some speech problems and pronunciation issues. I couldn't for the life of me remember specific words that i was familiar with, how to pronounce specific words and forgetting conversations right after I began them. These issues were more discouraging than anything, but with some daily brain games they got a little better.

2.) I was lucky enough not to get too sick from my chemo treatments, but the radiation was the kicker and the side effects from the stem cell transplant were less than desirable. I had some mucositis from the treatments (this is where there are sores all over your mouth & throat), which made it hard for me to eat, swallow, drink & talk. I had to undergo some "breathing treatments" every day for over a week before that got better. This wasn't as big of an issue, but it was still uncomfortable for me.

3.) The best out of everything is what I am dealing with currently... the early menopause that I have been irritated with since 2008, right after my stem cell transplant. It was July 2008 when I had my last period, and haven't had one since. So, the menopause wasn't fun, being 28 and having hot flashes, mood swings and lack of energy and on top of it having friends that just didn't get what was going on with me. And honestly neither did I. After telling my doctor a few times over 2 years of the symptoms increasing, they finally scheduled me to see a Gynecologist. The gyno's suggestions was just what I didn't want, because I knew the side effects were not desirable. He put me on birth control - the kind that had the worst side effects. Despite my concern, he said it was the only thing he could put me on that would have the best impact and protect me in the long run. That was the end of February 2010, by the end of March I was experiencing pain in my left leg, which turned into swelling. My left leg had increased in size - nearly doubled, and the pain got worse within days. By the 30th of March, I was in my local hospital getting treated for a DVT- Deep Vein Thrombosis - A blood clot in my leg.- That was only the start. The birth control pills caused the DVT and I found myself in the hospital for 2 weeks, getting injections of blood thinner as well as taking pills. The end result, was that I would be on blood thinners for the next 6 months. Hmmmmm. Thanks!

4) Because of the results of me going on birth control, and getting the DVT, I still had yet to find a solution to my early menopause situation. So I found myself setting up an appointment with a local nurse practitioner. The nurse practitioner, ended up doing several blood tests on me to really fully diagnose my problem. The end results? A mixture of the chemo & radiation gave me: Not only early menopause, but also a Vitamin D deficiency, less than a menopausal woman's Progesterone levels, low levels of testosterone & estrogen and low calcium levels. :( She ended up putting me on some vitamins and pills, all of which I had to pay for myself, and all of which were costly. One bottle of specific multi-vitamins that she told me to get cost $50/month. Several bottles of pills were anywhere between $15-$50 each. The cost was just too much, and my visits to her were not always covered totally by my limited insurance. Unfortunately I had to stop going to her and there were no other options. So for now, I deal with the minimal menopausal side effects.

5) Herniated Discs in my lower back - L4 & L5 that were caused by the radiation. So, the result of these herniated discs, include pain in my back & right leg when standing, walking and sometimes sitting, and numbness in my right leg. So, I started swimming every other day at the gym. For me and my insurance - a gym membership is not covered, so this comes out of pocket- another cost for the month normally can range between $25-50/month. Another option is physical therapy- which is what I also do, but my insurance only covers 14 days of treatment per year- hmmmmm. So, the treatments we MUST have to save our lives, are the treatments that cause these life altering side effects and thus are not always fully covered enough to recover from these side effects.

6) Dental Problems - yes are included in my long list of less than exciting side effects from my treatments. The radiation did cause some damage on my teeth - like destroying the enamel & causing some of my teeth to break. I was put on some bone pills that would help me strengthen my bones. But the dental problems, broken teeth and temporary fillings that I have to purchase at the store to hold them together just don't cut it. And my insurance? Doesn't cover dental coverage anymore, and I am left here.... wondering what I am supposed to do next. The treatments have left me with problems that I cannot resolve easily and I hear this time on and time again from survivors. In addition, some of us because of treatments must get sedation dentistry- this includes me and the cost of this is pricey on top of the dental costs itself. Dental Sedation costs anywhere between $100-$500/hour. :(

Now here comes the crazy part that I am sharing with you, the costs of treatments for some of these issues.......

One Doctor Visit $205
One Pelvic Exam: $280
Doctor Visit: $215
Genetic Exam: $53
MRI Abdomen: $283
MRI Pelvis: $283
Chest X-ray: $36
Doctor Visit: $122
Specialist: $256
Doctor Visit: $167
Doctor Visit: $158
Emergency Visit: $411
CT Brain/Head: $140
Blood Tests: $90
BT-Menopause: $836.095
BT- Menopause: $271.50
Complete BT: $2,264.80
Complete BT: $2,585.90
MRI Pelvis: $4,342.00
MRI Abdomen: $3,602.00
Asstd Treatmt: $558
X-Ray/BT: $1,943
Doctor + BT: $1,166.30
Doc + BT: $606.80
Doc + BT: $1,295.50
Doc + BT: $1,475.90

These are costs for 2 months of treatments/appointments/tests/etc.
The total cost 2 months: $23,647
Now if we guesstimate this amount for an entire year of treatments & tests, it comes to: $120,000!! WOW! This doesn't include the costs of hospital stays or other treatments and tests not included in regular care.

Did you know that a Stem Cell Transplant costs: $360,000 for one person?
Did you know that one day in the hospital is between $10,000 and $20,000?
Do you know what your insurance company will cover and how much you will be required to pay?

Wednesday, July 14, 2010

* Whatever You're Doing - Dream BIG! *

The truth about this life that we have on earth is - we only have each day as they come. We are not guaranteed the next day, so we have to live each one up as they come. With this knowledge, you must be able to find your ultimate passion in life and try to find a way for it to work for you to survive and succeed. Too many people in the world have jobs that they hate and dread going to everyday, but they do it for the money, for the extra perks, but every day that they continue that job, the less of a chance they may have of getting out of it and into what they love.

I meet people everyday, I'm a talker and am constantly asking people what they do for work and what they wish they did. Very few people respond to me with "I am doing just what I love." and more people respond with "It's a job, I need the money. It just works but I hate going." I know that times are tough right now, and the economy is in a slump, but if you could take the things you are passionate most about and incorporate them into something you could make money with, then I say GO FOR IT!! DREAM BIG!!

With this in my mind, I have looked at my life before all of this cancer, and had I not had cancer, my life would have been entirely different - my friends and the people I have met thus far would all be different and the changes in my life would have never happened. My life changed and I am doing great things - with my life and with UCAAN! :)

Dreaming Big - can be used in all aspects of your life, whatever you want to do, do it in a BIG way!! Speaking of Dreaming Big, The UCAAN Team and I wanted our Annual Date Auction to be even bigger this year than it was last year, and we are in the process of making this an *AMAZING* one!! We've got the event scheduled on Friday October 15th, 2010 at the World Renownded Canyon Club in Agoura Hills, CA
The Canyon - Entrance
More details to come, but this will be an Amazing event for everyone! There will be "Something for Everyone!" It's our *UCAAN Ultimate Experience* including Time with Celebrities, Singles Date Auction, Silent & Live Auction & Marilyn McCoo & Billy Davis Jr in concert!! WOW! Talk about a fun fill evening! Make sure to purchase your tickets through UCAAN, so we can make $$$$. And better yet, 50% of all proceeds that we make from this event are going to a Local VC family whose father has Lymphoma and they are in need of money for treatments. :)

For more event info, contact Rachel - ucaanorg@yahoo.com

Monday, July 5, 2010

Dating and Love Life?

Since my diagnosis I have realized a lot my dating habits and my dating life in general. I find that dating is harder for me now, because I expect so much more out of a person/a partner in crime. I soon realized that the characteristics that I was looking for in another person a few years ago, just didn't cut it when thinking about my current dating life. So, I took some time and wrote out a list of the 6-9 of the most important "Must Haves" in my future fella. What are they you ask? Well, they included the following: 1.) He must have a job or a career - something he does because he enjoys it, not because he feels that he is expected to, or just because he makes great money but dreads going to work every day. 2.) He Must have a Sense of Humor- he should be confident enough to be able to laugh at himself and of course at me and my dumb jobs. 3.) He Must be passionate/driven and compassionate in all aspects in his life. He even gets brownie points if he can see that "when life gives you lemonade, make lemonade!" He should be able to find a way to turn any negative or bad situation into a good one! 6.) He Must have a car, because I do and cannot afford to be a chauffeur. 7.) He should have a stable place to live & be independent. 8.) He cannot be an alcoholic or druggie. It's even better if he doesn't smoke - because I don't like kissing ashtrays, or alcohol bottles. :) I am not interested in pot smoking around me either. 9.) He Must Love what I am passionate about, and maybe even want to be part of my organization as well because he knows it's something that I LOVE and that I am passionate about it!!

I've tried every form of dating from online to speed dating to meeting them through friends, I have even been single and not looking for about 2 years..... hmmmm. I know what's most important in my life at the moment and it's not dating - but a cuddle buddy would be great.

I know that dating after cancer has it's complications, lack of sexual desire, some may feel inadequate, some feel like they can't do the things they used to be able to do and some soon realize that their energy level is not what it used to be. These feelings are common even for those of us who are in relationships, are dating or are married. We all feel similar symptoms and side effects. But it's easiest to understand that it's all a process, and we have to take things as they come, learn to accept them and work with it however we can. :)

Sunday, July 4, 2010

It's a Small World Filled with Lots of Coincedences!

That's the weird thing about life..... sometimes we meet people and we feel like we're not totally sure why they have come into our lives. For one reason or another, we meet these people and there is a purpose. We may not realize what the purpose is at that moment, but eventually it WILL come to us. And we'll have the same thoughts "Ohhhh that's why I was meant to meet you!"

In my life, this happens more than I tend to admit. But when It does, I do like to share it. One of the most important parts of this story is this piece of advice: In your Cancer Journey, You MUST learn how to be your own Advocate!! You must realize that sometime YOU have to be the one to take initiative for your own treatments & care - especially if you feel you are not getting what you need! With that thought in mind, I will continue with my story.....

About 2 months ago, when I went to the City of Hope for a check up, I met a woman who worked for my doctor's office. When she realized who I was, she was glad to meet me because of what the other nurses there had said about me. Well no sooner after I met her, I got a phone call from her, and she told me that she loved my passion and my attitude and felt that I would be a GREAT speaker for an upcoming ACS Relay For Life event in San Bernardino. She gave me the contact information for the woman in charge of the event and asked me to call her. No sooner after I called "Adrienne", I was scheduled to speak at a mini relay "prepie event"- as she called it.

So, I did. I drove the almost 2 hour drive to San Berdardino solo to speak at the mini event. After I set up my tent, banner and table of info, I was joined by buddies Holly, Lester & Trish. The speech was short and to the point - I told the shortened version of my journey with cancer. The crowd cheered and loved my honesty. Although the event itself was a very small one, I knew that there was a reason why I had to be there. Although I didn't know why yet. The group ended up asking me to speak a little more -they were inspired by what I had said before and decided to tell them some of my funny cancer stories, which included classic tales of my mom and eventually they had me on stage singing "Last Dance" and doing crazy dances. By the end of the day, I knew that I was there for a bigger purpose. I was there to provide support, hope and joy to those amazing 8 women there, those fabulous fellow survivors and volunteers. And by the end of the day, I was asked to speak at their future events! :) YAY!


Aside from that tale, the best as of yet was recently. On Thursday, I went to see my doctor at the City of Hope and told him about the horrible headaches that I have been having for well over 4 days. I was mainly concerned about them because the pain killers didn't help and it was on the same side as my Ommaya Reservoir. Rightfully so, I should be concerned. My doctor however said it was nothing and was not interested in taking the precautions I had hoped for. By the time I got home, the headache was far worse and I decided that it was best to go to the local ER to get checked out. So, at 9:30pm my mom and I went to the local hospital. And as we waited I saw a familiar face, but was totally lost about how I knew them. after about 45 minutes, I was on a gurney waiting in the ER to see a doctor. My mom and I sat there giggling and laughing as we saw 2 handsome cops come in with a suspect. They were CHP officers and I just had to ask if they knew a friend of mine. They totally knew her and said she was at the site where they had arrested this guy. It was a coincidence.

So what followed this, was the drunk guy talking to my mom and joking with the cops about how he didn't want to be tazered. And once again, I saw that lady - the one that I couldn't quite put my finger on how I knew her. I looked at her and said "I know you! But I don't know how." She stood in front of me as I gave ideas on how we may have known one another - "Curves? Hmmmmm. Target? A limo service?" I asked her. But I struck out. I never ended up finding out how I knew her, and even saw some other people I recognized but couldn't put my finger on how I knew them..... Weird. So by 2:30am, I was seen, had a CAT Scan of my head, was given plenty of daloted for pain and was told that I had a Tension Headache - cause by both- my Coumadin and stress. Hmmmmm Interesting!

Moving on to today and my adventures, which included visiting with friends Fred, Miriam, Cheryl, Tara & Pegah and doing some healing with them for Fred, who has brain cancer. We spent about an hour meditating about healing Fred. It was good and seemingly helpful for all of us. Afterward, I went to pick up my friend Kim - who is always nice enough to drive me to my COH appointments. And I had offered to drive us to the local hospital to see a friend of hers named "J" who has chirosis of the liver. When we got to his room, I walked in with Kim and was shocked to see the lady I had seen 2 nights before in the ER, the one I knew I knew from somewhere. She was just as shocked as I was to see me again. We had met one another and soon, I realized how. Kim had introduced us once, because we are all survivors or cancer or have had family with cancer and we all attend the Wellness Community. What a small world!!! No sooner after I arrived, I saw another familiar face - the man I had seen in the hospital, turned out to be "J's son and we had gone to high school together. WOW! So, needless to say...... things happen for a reason, even if it's just to provide someone with hope, compassion, support, or inspiration.

When you meet someone, you don't have to question right away what the purpose of having them in your life is, just sit back and wait to find out. God has a specific plan for bringing these people in and out of our lives.... we don;t have to understand it, just accept it with open arms, an open mind, an open heart and take the journey where it leads us!!

Wednesday, May 19, 2010

Let's Laugh!

So, yesterday was my day off from work. And I decided that it was time for my pal and fellow kick ass cancer survivor Cheryl and I to hang out. So, we went to the bead store so I could buy some clasps, we enjoyed a healthy dinner at Whole Foods of some yummy prepared foods. And while at Whole Foods, I met a fabulous partially bald man. Cheryl who is always in stitches laughing whenever she is with me, was just that- in stitches laughing as I stared at the bald man and exclaimed how much I loved his partially bald head. Now, I know..... I sound dysfunctional as ever right? I mean who really stops men in the store or in public and tells them that their baldness (whether intentional or part of life) is beyond awesome! This man, however was happy to hear about my love for his baldness. Cheryl jumped in just as I was ensuring the man that I wasn't crazy and that it was just something I loved about men and she exclaimed "My friend Rachel is a cancer survivor and she LOVES Bald men, because she was bald too! And she's in the 805 Magazine this month!" No sooner than she said that, did I have my issue of the 805 Living (our local magazine) in my hand and open to my signature article. :) Cheryl was smiling and cheering, and the fabulous bald man was excited as well.

No sooner after we met we started talking about fruit juice and healthy eating, and Cheryl, cute as ever continued to tell the man about my car magnet that expressed my love for the baldies - it was cute. He was sweet, I gave him my business card and told him that we'd love any help that he wanted to offer. He smiled and acknowledged us. So, after we ate dinner at Whole Foods, Cheryl and I returned to her house to hang out and meet with a friend of hers. When we arrived at Cheryl's place and I was walking up the stairs, my favorite glass bottle of peach white tea fell out of my purse and onto the stairs. Cheryl, who knew that I was somewhat struggling to get up the stairs due to the blood clot in my leg wouldn't let me clean up my mess and instead had me sit on her couch as she cleaned it up for me. What a "cute-sickle". I overheard an older man asking her if she needed some help and then a the voice of a young man. I popped up out of my seat on the couch and went to see who she was talking to. As I peered over the stairs, I saw a handsome young man, who looked up at me and smiled. Cheryl, who was downstairs looked at the young man's face and said "This is my friend Rachel and she's a cancer survivor...." So I walked down the stairs to greet the young man and his dad. (As Cheryl told me later, she said that by the look on the young man's face and mine, she thought that a cupid had shot an arrow into both of our hearts.) :) Lol. As I talked to the young man, it turned out that he was a few years younger than me, had gone to my high school and had some stuff in common with me. I gave him my number and suggested that we hang out sometime. He was really nice!! YAY!

Speed Dating? Hmmmm. Sounds like a fun adventure! I'm In!

So, for the past, I dunno maybe ten years I have always heard about speed dating. On the TV, from passerby's, ads, etc. And I have always wondered- could you find a match in 6 minutes or less, and could you really have a mental connection after that short amount of time? The way that I looked at it, was simple... what have I got to loose? Except $20 and an hour of my time. After much thought, and two and a half years of being single, I decided that it was time. Time to steer away from my comfort zone and traditional habit of checking out the personals on craigslist and the online dating sites, and try something new and fun.

So on St Patrick's day, I dove in, and attended a St. Patrick's Luck Mixer. $20 got me in at a local sports bar that I frequented on Tuesday nights for karaoke. The set up for the mixer was simple. The ladies got a green coin, and the men had I think a gold one, and each of our coins had a number on them. We'd sit at a table and talk to 2 guys. And then they would match us with guys with the same coin number as ours, so we would have one on one time. That night, was a ton of fun! I didn't have any matches, but I did meet a new, cool friend- Mary. And I enjoyed some fabulous karaoke and rocked out to my favorite songs for my fellow friends that I met at the mixer. :)

My first official speed dating event, was on a Monday night (04/26/2010) at a local restaurant in Westlake Village- a fancy one too! I had signed up for the speed dating event for 30-45 yr olds and was looking forward to see who I would meet at the event. There ended up being 7 women and 6 men. The ladies sat at our designated table (we had name badges on with a number on it), and we would sit and wait for our date to come to our table. We all had little "cheat sheets" as I call them, where we would write the gentleman's name, the name tag #, details about them and if we felt they were a friend/business match, or a dating match. Every six minutes, the man we were talking to would switch and move on to the next woman, and each of us would have a new man to talk to. That night, I had the chance to get to know 6 eligible bachelors: Steven, Michael, Ramon, Brad, Ray, & Phil. All of the guys had very different personalities. I noticed that these men, asked me questions, which was nice - because I wasn;t the only one asking the questions. I didn;t have a match, but I did get some great new friends and was looking forward to my next event!!

My most recent speed dating event was on Monday 05/17/2010 in Camarillo at a very nice restaurant that I had always referred clients to, but had never been to myself. I was able to convince one of my great friends Brianne to come along with me to join in on the adventure. As Brianne and I sat waiting for the event to start, I noticed a fabulous bald man come in the restaurant. Brianne, saw the look on my face and laughed. She knew that all I was thinking about was this - bald man. :) Lol. This event, was a small one as well, an the age range was 25-34. There were 6 women and 6 men. The guys I met this night included a repeat attendee: Ramon. And 5 other available bachelors including: John, Joel, Tom, Brian & Kurt. All of the men were extremely nice, but I did notice a difference with this group - these guys didn't ask the questions until I asked them what they wanted to know. Hmmmm Interesting! One of the guys in the group was 37 and I was surprised that he didn't ask me more questions. All in all, Brianne and I had a great time talking to the guys and getting to know them and although we didn't have matches, we thoroughly enjoyed the late night snack we had at Carrows as we discussed the evenings' men. :) Brianne and I are looking forward to the next event! Speed Dating.... Here I COME!! :)


Saturday, May 15, 2010

Meeting People Along the Way & Inspiring is THE GOAL!

Ever since I made my first UCAAN t-shirt, I have been wearing it every chance I get! :) Including recently when I attended a Wellness event in Westlake Village with my friend and fellow survivor Sheryl. The event was held at a local business and all in all was a lot of fun. But I had a feeling that I just had to be there, and at that moment I wasn't quite sure why, but I would soon find out.


As Sheryl & I enjoyed the delicious food and drinks at the event, we spent some time talking to people. Sheryl, who was beyond excited about me being in the local and recent 805 Living magazine in am article called "Voices of Survivors", which included the stories of 4 cancer survivor women who were doing amazing things- and I was one of them!!! :) So, as we sipped our hot tea and talked to one another, I overheard a conversation near me- two women younger than me that were raving about how an $80 a month gym membership wasn't bad at all. I thought to myself at that moment, $80 a month!?!? Sounds like my electricity, gas & internet bills all together. Lol. And for my fellow cancer survivors I know that this is a lot of money for all of us! I looked at Sheryl and said "I can't even afford the $37/month to get a gym membership for myself, let alone an $80 membership." She laughed, because she not only understood what I was talking about, but she also agreed.

Sheryl ended up getting a free sample of a fabulous gluten free cookie at the event and decided that she just had to buy one. As we walked to the front desk, and she asked about the price for the healthy cookie, meanwhile I was talking to the women behind the desk who were all eating the cookies! :) I looked ta them and said "Those cookies are good, but their sodium content is higher than what women can have in a day!" They looked at me shocked, as I continued to tell them that the suggested amount of sodium for women per day was 90mg. And the cookie they were enjoying was 150mg. I told one woman, you can eat half of that and almost reach your daily amount of sodium, her response? She put it down and continued to listen to a story her co-worker was sharing about her brother in law who loved Top Ramen. We all continued to talk and somewhere along the line, I decided to share my new found fame in the 805 Living magazine. I opened to page 67 and showed the women behind the desk. One woman, read the article and began to cry. I wasn't expecting that reaction and when I asked her why, she told me that her 3 year old niece has Leukemia and was getting treated in England, where she lived with her parents. I gave the woman my card and we exchanged information. I told her that I would make a little pink bracelet for her niece, because she is a survivor! :)

As Sheryl and I, with our cookies in hand walked out to the car I looked at Sheryl and said "I have the beading stuff here! I can make it now and get it to her." Sheryl agreed and I sat in my car and made the little bracelet. When I was done, I returned to the woman (Wendy was her name), and told her I had a gift for her. "Close your eyes." I told her, as I placed the newly made survivor hope bracelet into her hand. I had her close her eyes and again and I placed a pink necklace on her (that I made for someone), but it matched the bracelet and I felt that Wendy needed something to help keep her close to her niece. The look on her face when she got the gifts was beyond exceptional, and yes she started to cry again - tears of happiness!! She loved it!! Here is a picture of Wendy & I!


So, If you sport a UCAAN shirt, make sure to take pictures of you helping others! Because UCAAN Make a Difference! Even when you least expect it!

:)