Showing posts with label young adult advocacy. Show all posts
Showing posts with label young adult advocacy. Show all posts

Wednesday, September 15, 2010

Legacy





I lost a good friend on Monday. Found out about it the next day.  Figures the one day I decided to stay off the internet.  It was hard to learn that Don Wilhelm had passed away from a long battle with cancer.  Found out about it during The Vic McCarty Show.  Hard to do a live radio broadcast when you find out that news.  Hard to do much of anything.  Even the pilates class I had that day did little for me.


I can't even remember how Don & I met.   Probably through stupid cancer or Matt Zachary.  I was one of the people who he asked to review his book for a virtual blog tour.  I have to say his sense of humor is a lot like mine.  It was like I was reading something I had lived through.  People say stupid shit to you when you have cancer.  He wrote it all down.  Told it like it was.  It was funny and real.  It is the best book I have read about what its like to have cancer.

I was lucky enough to meet Don & his wife Amy in real life, he ironically is from the town I live in now.  We would chat on facebook and twitter.  We talked about survivorship, life etc. 


The last time I saw him was in July.  I am grateful that my fiance got to meet him.  We went out to The Pancake House in Bay Harbor.  He gave me some of his books to pass out to survivors who listen to my podcast or who I meet in person. 

When I noticed he wasn't on facebook that much I emailed Amy and asked how he was.  She said he was tired of fighting.  This was his final  facebook post:

I’ve filled my original goal here on earth. It was to spend the remainder of my life helping cancer patients. It seems to be where I found the greatest joy and the most sense of worth. I’m moving up into the next roll. I’ll leave my faithful followers to slip in and fill the gaps. Love to you all and positive energy, ...Don Wilhelm (Don entered into Hospice care as of Weds.)

  

When I read that post, whether you realized it or not, I know you were talking directly to me.

I wanted to wait a while before I wrote something about my friend, but I couldn't wait.  The day I found out you passed away my friend was sad.  It was a beautiful sunny day up north in the place you love so much, but somehow it seemed so dark and lonely.  Without you here with us the days seem a little less sunny, the stars seem to shine a little less brightly and the world seems sadder and smaller.   


I know that you would smile at me with that easy carefree smile of yours and say "Hey Mel, it is what it is."

I know that Don.

But I miss my friend

Sunday, September 5, 2010

Its (fill in cancer type) awareness month




Its September.  Its Prostate, Ovarian, Childhood, Thryoid & Gynecological awareness month.  Everyone grab your ribbon color of choice and wear it proudly.  

I am a breast cancer survivor, we get a month, and pink is plastered everywhere, and I mean EVERYWHERE, it sells everything from hair brushes (ironic since most breast cancer survivors lose their hair) to tuna fish and toilet paper (Wipe for the cure??)   

So I go into the grocery store and do shopping as I usually do and I don't see any thing yellow or teal or blue promoting childhood, ovarian or prostate cancer awareness.  Why is that?  My cancer isn't any more or less important than any other cancer survivor.  The only thing I have seen on tv or in the stores was a Hyundai commercial stating that they would donate a certain percentage of car sales to childhood cancer awareness.
At least someone is doing something right?


I consider myself a cancer advocate, not just for breast cancer, but for all cancers, even if it is one I can't pronounce or have never heard of.  Its ridiculous in my opinion to give cancers certain months.  I was diagnosed in September, cancer didn't wait for its allotted month to strike me.  Cancer doesn't do that. Those of us who have been diagnosed know that.

 We shouldn't wait until a certain month to raise awareness for any type of cancer, and the whole cancer awareness thing really gets me, is there anyone anywhere who isn't aware that there is cancer?  If I buy chicken of the sea with a pink ribbon on it the money should go towards research, helping other survivors, finding a cure, finding better meds to deal with the cancer, not for awareness. 

During the Cancer Treatment Centers of America Empowerment Rally I was fortunate to meet in person, after being a I guess for lack of a better term a" friend in the virtual world" Matthew Zachary, founder or I'm Too Young for This!  a foundation that helps young adult survivors.  We shared a ride to the airport and we were discussing cancer "awareness" Basically he said we should think of the body as a whole, not as parts, all the organizations should help each other.  I totally agree.  Yeah, you might think breasts are sexy and they sell, but if you don't have the lungs behind them to work or the brain to think  or skin, then what are they?  Just another body part with cancer.



So yeah for me every month is cancer awareness/advocacy month.  Until there is a cure.

Mel is the producer/co-host of The Vic McCarty Show.  Listen live Monday-Friday 10am-noon eastern on wmktthetalkstation.com

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand and on Itunes.

Sunday, August 29, 2010

Help Beat the Clock on Cervical Cancer



Another Guest Blogger Enjoy


In October of 2008, I was diagnosed with Stage IIB cervical cancer, a couple of months after retiring from the NYPD. After a long and tough journey of radiation and chemotherapy treatments, I was cleared by my doctor in May 2009. May 5, 2010 marked my first year of remission and I am hoping for many more. Cancer changed my life; I thank God for my second shot at life as my priorities have changed and I am proud to call myself a cervical cancer survivor.



In September 2009, I did a cervical cancer walk (Walk to beat the clock, organized by non-profit Tamika & Friends). At the walk, I found inspiration in seeing so many cervical cancer survivors telling their stories to help other women understand that through awareness and prevention, this disease can be entirely eliminated. So, I joined the movement and now I am the President of Tamika & Friends’ New York City Chapter. Tamika & Friends is a national non-profit organization dedicated to raising awareness about cervical cancer and its link to the Human Papilloma Virus (HPV). It was founded in 2005 by cervical cancer survivor and advocate Tamika Felder.


On September 25, Tamika & Friends is having their 3rd annual NYC Walk to Beat the Clock to help beat the clock on cervical cancer. We want to publicly celebrate women who have survived, remember those who have lost their battle, support those who fight cervical cancer today and educate women on how to prevent a cervical cancer diagnosis all together!


Cervical Cancer is almost 100% preventable, yet 11 women die each day from this disease. I do not want any other woman to go through what I did and become another statistic. I am committed to the eradication of cervical cancer along with Tamika & Friends.


Patti Murillo-Casa

Cervical Cancer Survivor

President, NYC Chapter, Tamika & Friends

Friday, August 6, 2010

Done




I wish that is what they would stamp on my cancer chart. DONE. As if you could just stamp something and have it be so like "top secret"  like on NCIS or "case closed," like the CIA does. Sadly that is not the case. I don't think you can ever be done with cancer. Even in remission or not having it for many years, there is always that scanxiety, with every blood test, or scan, or even phone call.

September 18th will be my 3 year cancerversary.  Still can't believe it has been 3 years.

Certain things I remember like they were yesterday.  Other stuff is just a giant chemoblur.  I remember when I was told, obviously, when the surgeon told me my options, when the oncologist said ok we can start chemo next week, I thought, what, already holy shit, give me more than 7 days after I get my port in to process this craziness.

My friends told me that it would be over before I knew it.  I didn't believe them at the time.

This is going to take forever I thought HOW MANY MONTHS WILL I HAVE THIS GODDAMN PORT IN?  How long will I be going through chemo and herceptin, and I have to reschedule my life around an afternoon radiation appointment?  Really?

My friend was right.  Although it didn't seem like it it did go by fast.  Now I watch other people go through similar situations that I did, chemo, surgery radiation, and I see the anger and frustrations in their posts.  I know how they feel, I felt that way too. 

Its hard to explain to my friends that soon this will be a distant memory, that this wont last forever, but when you are in the moment, surrounded by cancer, time stands still.

I will continue to advocate, continue to speak about patient empowerment, continue to share my story, continue to blog.

Until there is a cure.

Only then will I be Done.

Mel is the producer/co-host of The Vic McCarty Show.  Listen live Monday-Friday 10am-noon on wmktthetalkstation.com

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand now and also available on Itunes

Monday, July 26, 2010

WENG-AM Tampa Morning Magazine interview with Richard Spedaliere 7/21/10

Radio interview on WENG -AM Tampa on the Morning Magazine with Richard Spedaliere.  Talking about all things Cancer Warrior!

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand now and also available on Itunes

Interview on KSPI-FM Stillwater Radio Oklahoma 7/19/10

Interviewed by Chris Greenert of Stillwater Radio on 7/19/10 talking about all things Cancer Warrior!!

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand now and also available on Itunes

Sunday, July 11, 2010

Bike 4 Breast cancer event



This is why I do what I do






Mel is the host of The Cancer Warrior on Empoweradio.com  Available on Demand and also available on Itunes.
 
Mel is  also the producer/co-host of The Vic McCarty Show.  Listen live Monday-Friday 10am-noon on wmktthetalkstation.com

Friday, July 9, 2010

The Team





ESPN had an hour special on about where Lebron James was going to play.  An hour.   I didn't watch it but I posted on facebook and twitter about how great it would be if ESPN would donate an hour to Mandi Schwartz, about her plight, and her need to find a donor.  I got responses on facebook that I wasn't expecting. Some people seemed upset about it.  Uh its only one hour, and dude, Lebron decided around 4pm that day where he was going.  They said ESPN is a sports channel (wow now THERE'S breaking news)  That ESPN donates millions of dollars to cancer research through the Jimmy V foundation, which is totally awesome and I applaud them for that.


60 minutes was all I was saying the sports channel could donate to help Mandi, or even 30, in the mere scope of things it isn't that long.  That is about as long as we wait for the doctor, not even including the actual appointment.  It would be cool if any channel would donate an hour or even a half hour to Mandi, but I get it if you donate for one person, should you donate time for all? It could be a slippery slope.

Mandi is a hockey player, like me.  She plays at a collegiate level, ok so not like me.  I would love to share the ice with her and skate with her team, even though I would get seriously schooled by the Yale Women's Hockey team, it would totally rock.

Well now Mandi is on another team.  A team that I joined in Sept 2007 when I was diagnosed with cancer. 

A team I really didn't want to join.

But here I am.

On this team.

I hope Mandi reads this, so she knows she has people like me on her team.  There are people who were on this team before me, and unfortunately will be after me.

Since hockey is a great analogy for fighting cancer, I have just one thing to say to Mandi, and, to anyone on my team, who is on the ice,skating hard, or  battling...

I will drop the gloves for you.

For more info about Mandi: http://www.BecomeMandisHero.net


Mel is the producer of The Vic McCarty Show. Listen Live Monday~Friday 10am-noon on www.wmktthetalkstation.com

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand now and also available on Itunes.

Tuesday, July 6, 2010

Hit me baby one more time....

So my docs office called me on Saturday morning.  Yes you read that right Saturday morning. At 8:30 to give me the results of a bone scan.  Now anyone who knows me knows that if you call me that early and I answer chances are I wont have a clue of what we talked about.  I am more of a night owl, or insomniac, whichever you want to call it.  So she mentioned something about osteopenia and the scan I had a while ago.

So I fall back to sleep and when I wake up I am thinking osteopenia?  What the hell is that?  Sounds like some country in Europe, between Luxemborg and Lithuania, I was never really good at geography so I guess it could have been.

Of course I look up osteopenia. I am a internet junkie, of course I am going to look it up.  It is defined on Web MD as: Osteopenia refers to bone mineral density BMD  that is lower than normal peak BMD but not low enough to be classified as osteoporosis.

So let me get this straight. I finished up the shitty part of my treatment in mid 2008.  I get a bone scan and find out that I have another side effect.

FUCK.

While I know that this was a possibility, once again going back to the "menu" of side effects that the docs give you while you are going through treatment I didn't expect it. I expected to be finished.  Done with side effects.  I still have lingering neuropathy that shows up every once and a while like an unwanted house guest and sometimes stays like one too.

Getting another side effect is like getting punched in the face without expecting it. Except, with that the black eye you may get will go away. Osteopenia  however stays with you.  Yes I will take more pills (oh goody just what I wanted to do spend more fucking money on meds and take more fucking pills) and do weight bearing exercises (walking, which I find extremely boring and tedious, and no there will be no running, not with these knees)  to help offset the osteopenia.

Sometimes I wonder why my body hates me so much. I have been pretty good to it, (well we wont talk about those college days, that is just to be expected, and what happens in the dorms stays in the dorms)  It attacks me with cancer (overproduction of cells)  My immune system attacks me (hypothyroidism) I have vitamin d deficiency, I have no clue how I got that besides I am not outside enough?    My mind attacks me with depression.

It is very frustrating to think you are out of the woods only to look up and see more trees.

Like I always say:

Cancer, its the gift that keeps on giving

Mel is the co~host/producer of The Vic McCarty Show.  Listen live 10am-noon eastern time on wmktthetalkstation.com 

Check out my podcast The Cancer Warrior on Empoweradio.com. Available on demand and also available on itunes.

Monday, June 28, 2010

They are just words, right?


I am online alot.  Some would say I am a social media junkie.  It is the wave of the future.  During these times online I read blogs, articles, facebook posts, tweets about cancer.  I am an advocate and I try to keep up on the latest news and goings on to keep readers of my blog and my facebook pages informed.  Something I started doing a while ago.  Anytime I found an interesting article or news piece I would post it, figuring it may be of interest to someone, especially since most people don't pour over medical info like I do.

I read other survivors blogs, not just breast cancer survivors, but other cancer survivors too.  Different cancer, same battle as I like to think.  We are all in the same fight.

Words.  They help, they heal.  They convey feelings.   In a prior post I blogged about my feelings of "cured" vs "cancer free."

Another word that just drives me crazy when it comes to people describing their battle is suffer (for the Vic McCarty show we actually had an author who had that in the title of his book!)

I believe in a positive mindset.  The way you look at something can change your outlook, your perception of how it is going.  When I began to talk about cancer on the radio and people asked me if I suffer from cancer I would angrily say no (I am not a cancer victim either, but that is an older blog that I wrote some time ago)  I am a fighter, I am a survivor, I am not a sufferer.  Yes cancer has attacked my body, attacked my mind, depression is something I never thought I would have and yes it has even attacked my spirit.  But through all of that I can honestly say I didn't suffer.  I prevailed.  I triumphed.  Its all in the way you look at things.  Some days I would get so tired I could barely make it through a 3 hour workday.  Some days I couldn't eat, couldn't sleep, was disgusted at the lack of hair I had from the chemo making it fall out.  The radiation machine freaked me out so much I had to crank up music on the ipod so I wouldn't hear the noise of the machine or the sound of my breathing, thinking am I breathing too hard that this will radiate my lungs (one of the side effects they tell you you may have.)
Through all of that I still don't say I suffered.

I believe in positive thinking.

I fought.

I battled.

I didn't suffer

I am  a  Warrior. 



Mel is the producer/co-host of The Vic McCarty Show.  Listen Live Monday~Friday 10am-noon eastern time on wmktthetalkstation.com also available as a  podcast.

Check out my podcast The Cancer Warrior on Empoweradio.com.  Also available on itunes.

Saturday, June 19, 2010

Friday, June 18, 2010

The Race



I went to my first NASCAR race recently, one of the perks of where I work.  I got pit passes, got up close to the drivers pit crew, saw all the prep they do during the race and when the car comes into pit row (ok so if I get the names of things wrong sorry, I play hockey, watching NASCAR to me reminds me of when I lived by the 101 freeway in the San Fernando Valley)

I am always thinking of my next blog, or podcast, what inspiring survivor I can get on the podcast, what I should write next.  I was uploading my race photos to facebook and I thought this kind of reminds me of treatment.

The race was my cancer experience.  While I was in the race, time stands still, moves slow.  For others it is just another day, minutes are regular minutes hours are hours days are days. 

The noise of the race was deafening.  That reminds me of when the doc first tells you "It's cancer"  Suddenly words run together, people are talking but it doesn't make sense.  You can hear your own heartbeat in the sound of the race.

The docs, nurses medical staff are your pit crew. All of the pit crew around the car reminded me of surgery, you are almost out of it, there are people around that you don't know and they are all checking on you.

"Checking under the hood"  as I like to call it when they do a breast exam.  The adding of the oil, like a blood draw, well you get the analogies.  Although I do think a blood draw would be less upsetting to me if the needles made that whirr sound like the pneumatic drill does in the race.

Your caregiver is your pit boss.  Making sure everything goes smoothly.  Not that that is entirely possible.  No one can foresee nausea, insomnia or any of the other lovely side effects that go along with cancer, but if it wasn't for your pit boss, your race would be more difficult

Everyones race experience is different.  Some go through treatment with little side effects, no major crashes to speak of.  Others have their cars in pit row the whole time of the race.  I have to say I was somewhere in between. 

Once the treatment is over, some people think the race is over, but there could be more races, meaning, complications, more surgeries, recurrance, depression, entirely new cancers.  Different races, different tracks.

We are all just looking to cross the finish line.  Doesn't matter if we get the checkered flag.  Just matters that that we finish the race, that we beat cancer.

I am looking forward to the time when no one will have to race.

Mel is the co-host/producer of The Vic McCarty Show.  Listen live Monday~Friday 10am-Noon on wmktthetalkstation.com.  Also available as a podcast.

Check out my podcast The Cancer Warrior on Empoweradio.com

Thursday, June 10, 2010

How Cancer Survivors Can Stay Positive



                                Another guest blogger.  Enjoy.

It’s a dreaded disease whose very name is enough to paralyze people with fear simply because survival rates are very low. So if you’re a cancer survivor, you know you’re among the select few who have beaten this horrific disease that literally eats away at your body. Death comes quickly to some who are afflicted with cancer; to others, it comes after a long and painful struggle to survive. But to those who actually become cancer-free after coping with the rigors of chemotherapy and other forms of treatment, the news comes as more of a relief than something to be elated about. This is more because cancer is notorious for returning with a vengeance, even years after you’ve been cleared of the disease.


I’ve seen both sides of the coin – I lost an uncle to colorectal cancer nine months after it was diagnosed, and I saw my grandmother beat breast cancer and live for another 20 years before she died of natural causes. So I know how fickle cancer can be – it steals life in one breath and also allows you to beat death if you’re lucky enough.

The key to surviving cancer is luck – you need to be lucky enough to detect and diagnose it in the early stages, you need luck with finding the right and most aggressive form of treatment, and most of all, you must get lucky in being able to rid your body of every last cancerous cell. Once you achieve all this, you can start to look to a positive future, one that is untainted by cancer.

The problem with cancer is that it can come back with a vengeance, so you need to do your best to stay positive in the years following your successful treatment of the disease, and the best way to do this is to:

• Focus on all that is positive with your life: You may or may not suffer a relapse, but it’s not wise to spend your life worrying about one. Focus on the fact that you’re healthy now and that you have been given the gift of life a second time. Look forward to living life fully and doing all that you want to do. And be grateful for all that you have rather than regretting the time you’ve lost to battling the disease.

• Join a support group: You may still be overwhelmed by the intensity of your experience, and if family members and friends do not seem to understand your emotional turbulence, find a support group of survivors like yourself who are more in tune with your condition. When you’re able to give vent to your feelings and listen to the stories of other survivors, you feel positive and uplifted.

• Follow up on your medical checks: You may be cancer-free, but it’s best to continue to monitor your condition and ensure that the disease does not return. The earlier you spot any signs of cancer, the sooner it is to get rid of it. Also, you feel more confident when you get yourself checked and find that you’re still free of the disease.


About the guest blogger:
This guest post is contributed by Kathy Wilson, who writes on the topic of      X-Ray Technician Schools .     She welcomes your comments at her email id:    kathywilson1983@gmail.com

Tuesday, June 1, 2010

Dear Cancer...

I started thinking about this on the eve of an oncology appointment.  If cancer was here, in this room, what I would say to it.

Dear  Cancer,

I go between being really pissed at you and being grateful.  Pissed?  You are wondering why I am pissed at you?  You stole almost two years from me,  where instead of having surgeries, chemo, radiation, nausea, constipation, insomnia, anger, having my pee turn red, having mouth sores, being bald, not being able to work as much as I used to when I should have been playing hockey, riding my bike, being outside enjoying the weather, not being so fucking tired I wanted to sleep, then not being able to sleep because of insomnia, making dinner then not being able to eat because I felt like shit.

You make it hard for me to think, because of chemobrain.  I used to know the answers to things, but some days I just struggle to put sentences together. 

I have scars, both emotional and physical because of you. You made it hard for me to look at myself for the longest time, that has passed, but I am still angry about it.

You are the reason my friend Nick Corea is no longer here.  You took him from us too soon.  I still remember that day when I found out he was gone.  It was like it was yesterday.  You robbed the world of a great man.  For that you will never be forgiven.


You wonder why I am grateful?  I am not grateful for you, lets make that clear.  I am grateful that I found you early, early enough to get treatment to stop you.  I am grateful that I found strength that I never knew I had, Grateful that I have an awesome support system of friends, family and co-workers.  The medical staff that I had was the best anyone could ask for.

Grateful I found a voice not only for myself, but because of you, I can speak for those who can't, who are too afraid, too sick, too weak or just too afraid.

Grateful for the network of people that I have found who hate you as much as I do.  Who want to eradicate you as much as I do.

Grateful I have found a purpose.  Ha, you think you did all this for me?  I realized strength and determination was in me all along, it just took something as vile as you to bring it to the surface.

Now you can leave.  You can leave all my friends alone.  You can leave people I never met alone.  You can go away.  Never come back.


If you do the last five things I ask I will be eternally grateful.

Mel is the producer/co~host of The Vic McCarty Show.  Listen Live Monday~Friday 10am-noon eastern standard time on wmktthetalkstation.com

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand now, and also available on itunes

Monday, May 17, 2010

Cure or Cancer Free?


I got into a heated debate, well lets say argument with a friend of mine about doctors using the word cure.  Once again, I have to say  this is my personal opinion, which will, I am sure piss some people off. I get stubborn that way.  I have my own beliefs.  I am not saying they are right, they are just mine.  Like I was telling my friend.  This is only my opinion, you don't have to like it, and if everyone had the same opinion as me the world would be a pretty boring place.

I hate it when doctors use the word cure when describing cancer.  Let's be honest.  There is no cure, not for one tiny little variant strain of any cancer. I wish to God there was.  I wish all oncologists would be put out of business, but that is not the case.

My friend asked me why it bothered me so much, Here is why: THERE IS NO CURE FOR CANCER.  For me, my definition, cure means there is 100% chance that your cancer will not return.  No doctor can say that, because, well once again, no cure. 

After I argued with my friend, I googled cure for cancer, just to see what I would come up with. Couldn't find anything listed.  Now I hoped against all hopes that I was wrong, that I would see something  on oncolink or something posted from the New England Journal of Medicine. 

Nothing.

I am cancer free, that is what the surgeon told me when he removed the cancerous tumor from my body.  If I was cured, then I would have assumed there would have been no need for the months of chemo, radiation and targeted gene therapy afterwards.

But I went through all that, and I still take tamoxifen, and I will until 2012.  I still get blood tests and scans, and have appointments, and I still worry a little every time,  because I am not cured, but because I am cancer free. 

I will advocate, I will blog, I will keep on doing my podcast.


Until there's a cure.

Mel is the producer of The Vic McCarty Show. Listen Live Monday~Friday 10am-noon eastern standard time on wmktthetalkstation.com

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand and on itunes

Monday, May 10, 2010

Decisions, Decisions



Another guest blogger
this blog took me ages 2 write down.. i was already thinkin a few weeks ago that i should finally write a new one again but i just didnt found the right words. but finally, finally i found a really good reason n the right words as well...

like some of u may know have i been in a emotional desaster lately.. i've been through a lot of ups n downs and i honestly have 2 say that it wasnt that easy 2 handle like it seemed.. first i was much more than happy that i was finally done with all this cancer crap.. got some good news that i was almost done with chemo.. i mean 2 more chemos 2 go isnt that bad.. so last monday i started chemo again.. i wa supposed 2 stay in hopital for 4 days this time.. i know what u might think now.. "well doesnt sound that much this time so it cant b that bad.." but peeps u have 2 know that the more shorter it was this time the more harder have been my chemodrugs.. it was really pushin me down this time but somehow i always found a way back up after everydays at least 8 hour session..

side effects like nausea hit me up really bad.. tuesday night i thought i would die.. i didnt even sleep cuz i needed 2 throw up nearly every 30 minutes.. after the 15th time throwin up i simply stoped counting.. my stomach started hurting really bad n one time again my heart become really weak.. maybe the second reason why i couldnt sleep.. i really think that its another reason cuz i was simply scared that i would almost pass away again, like i almost did 3 times before as i got my monstersession how i call them.. i've absolutly no clue why my heart isnt able 2 take all the drugs wich suddenly should help me 2 get better even if i have 2 go through hell before.. anyways that wasnt the only thing wich got more and more worse 4 me in the last week...
it also got more hard 4 me 2 breathe.. first i thought "that isnt that bad christina, maybe u r just exhausted from fighting.." well truely understandable that i thought that first cuz i really have been through hell over and over again the last weeks and month.. but my docs have become really worried and so they did some tests ( x-rays, bloodtests, CTscans n all that stuff ) i felt really uncomfortable cuz i didnt know what they thought it would be.. i just could read in their faces that it couldnt be something good.. i was so worried.. and i was allowed 2 be worried cuz of that.. well they did the test on wednesday n i got the results of that on friday.. they told me that my lung got attact with another sarcoma.. i truely dont wanted believe what ive just been told n so i asked if they r kidding me.. but sadly they havent been kidding me :S they said that they r goin 2 add 4 more chemos and that it might be fixed then.. i thought fine.. doesnt sound that bad.. 4 more chemos thats nearly nothing after everything i already faced in the past and so i was just happy that it wasnt "that bad" ...

cuz they had some trouble in the laboratoy i couldnt get the results of me blood test on friday.. and so i got them yesterday.. i went to my doc really happy cuz i thought everythign is goin on well.. drugs r workin n i was suppsed 2 go home.. but i've learned that u shouldnt be to optimisic when u r about 2 get the results of ur bloodtest -.-'
as soon i went into the room i formally could feel that somthing isn't right.. there was just something in the air.. so i sat down n asked the doc "whats wrong?? why r u looking so upset??" the room was filled with silence.. after arround 2 min ( wich seemed like 2 ages to me ) he finally looked up to me n started telling me that my medicatons stoped working for a reason they didnt found out until now.. ( u need 2 know that it was already the second time where they stoped working n we already changed them a couple of weeks ago ) i got a lumb in my throat, my eyes were filled with tears but i tried 2 hold them back as good as i could in that situatioin, i didnt know what 2 say i was just shocked that it happend again... then he continued telling me that they wouldnt have any idea what to do next and so they faced me with the hardest decision a human is ever able 2 be faced with...
i've been told that i would have 2 opportunities.. number 1 would be: stop the treatment and gettin rid of all the suffering and being able 2 enjoy the last 6 month i would have untill i'm gone... number 2 would be: continue the treatment getting much more chemo and another round of different drugs wich they are normally not usin for leukemia patients cuz its a really rough medication.. wich still doesnt mean that i'll make it though.... so i've been faced with dying happy within 6 month or dyin full of pain and even more suffering within 2 years... i've been so shocked that i couldnt say the tiniest word anymore.. my eyes started burnin cuz there were already overfilled with tears.. i just wanted 2 get outta the room.. so i just got up n went out.. my doc asked me what i wanna do n i just said i need a bit time 2 think about everything..
and well here i am now.. sitting alone at home cuddling my doc n asking god if its fair or not.. well i really dont have any idea what 2 do.. cuz a 21 year old woman shouldnt worry about how long she will b on earth, she shouldnt have 2 pick #1 or #2 (doesnt matter wich # i'm goin 2 pick cuz my life will totally change again) its not the right time for a 21 year old 2 worry about stuff like that!! normally i should worry about whom i'm goin 2 date or what i'm goin 2 wear or how i'm goin 2 do my hair but not about how long she wanna stay n wich way might be the right way.. i'm sitting here in tears right now cuz i just wanna wake up outta this nightmare.. dont know but somehow its like a slap right into my face cuz it's like i've been fightin so long for nothing.. it seems like it have been a waste of time... just the fact that i'm goin 2 die doesnt matter wich option i'm goin 2 take is truely killin me.. there's so much stuff popin up in my head.. so many what if questions but most of all i'm worryin what others r thinkin about the decision i'm goin 2 take.. i´m scared that they r goin 2 blame me for "givin up", scared that i´m goin 2 break so much hearts out there, scared that i'm goin 2 lose more loved ones and friends like i already did at the beginnin of this journey...
on the one hand i really wanna fight until the bitter end but on the other hand i dont want 2 suffer that much anymore... its just a freakishly weird feeling wich is overcomin me since a couple of hours... and the fact that i'm facin a decision like that alone without any support of my family doesnt really make it easier.. cuz this is exactly one of those moments where u just wanna have ur mom around.. but i know that that will never happen cuz she just doesnt care..

anyways i just hope that i'm goin 2 take the right decision.. cuz like i already said i dont wanna dissapoint someone with the decision i'm goin 2 choose.....
decision over decision n it seems like there wont be an end so far...

"when i would have 3 wishes, the the only one would be NO MORE CANCER!!!!!" - by my own

about the blogger:
christina is a 21 year old cancer fighter who got diagnosed with ALL leukemia in december 2009. she's fighting the fight of her life all by her own without any support of her family or friends...
u can follow her journey here : http://justchristinah.jimdo.com/
http://just-christinah.livejournal.com/
http://twitter.com/justchristinah

Friday, May 7, 2010

Advocate..

 
 
 Another guest blogger
When this whole thing started, meaning, form the moment I was told, "You have cancer." (and actually, those weren't the words, they weren't even speaking directly to me. They were telling my mom, and said, "She has cancer." and I just happened to be laying in the hospital bed next to her, drugged up from a 9 hour spinal fusion surgery, and overheard them. Either way, same impact.) and for quite some time after being diagnosed, any kind of cancer campaigning really rubbed me the wrong way. Pink ribbons made me angry. And I'll admit, even now, pink buckets of KFC for cancer just seems inane. Part of that is my opinions about the fast food industry, but something about the way cancer awareness is presented to the public, is a bit euphemistic, to the point of being cutesy.

But I'm experiencing, both with myself and through meeting cancer survivors, that once people reach a certain comfort level in their own situations, that there's almost a natural progression towards advocacy and awareness, and just wanting to help. 

My biggest topic, I want to advocate, and actually bring change to, is early detection. And not just to the public, but to the medical industry, as well. Here's a little background on me: I'm 29 now, I was diagnosed 2 years ago at 27. There is no history of breast cancer on my mother's side, my father's sister died of breast cancer at 50. I was 24 at the time, so breast cancer didn't seem like an immediate concern then, though looking back, I probably already had it. Plus, doctor's tell me that paternal genetics don't really factor in, anyway. Well, ok then.
 
But I wasn't a complete dullard. I had been doing self exams in the shower from the time I was a teenager. My mom had this model her obgyn gave her of this little squishy plastic breast with some, what I can only assume were, marbles embedded in it. It hung in the shower, and I felt it, and felt my own, and aside from it not even feeling like a real breast, I never felt anything even remotely close to this doughy, plasticine-like, marble filled maquette in my own breasts. Granted, I was just a teenager at this point, but I continued self exams throughout my 20's, and was told a variety of different methods for examining, and what to look for. I was told, "Lumpy, like oatmeal, was ok lumpy." Well, what kind of oatmeal are we talking about here?? I like my oatmeal lumpy. I was told not to dig around in the breast, that abnormalities would be felt with a flat hand. I was told pain is an indicator, but that premenstrual pain and firming was totally normal. And I was told that every woman has one breast that's larger than the other.

Here's what I did find: one breast was bigger than the other, and before my periods, it would get firm and painful, and the nipple seemed kind of anchored to the interior of the breast, where the other did not. I told my obgyn, who did an exam, and told me to lay off the caffeine. This was probably 6 months before I was diagnosed with Stage IV breast cancer. At that point my main concern was all the other pain I was having. Back pain, chest pain, trouble breathing. I went to several other specialists to address all these other pains, no one really came up with anything. Muscle spasm, was one guess, pneumonia, was another. One of the specialists even did a breast exam. He told me it was most likely Costochondritis, an infection of the ribcage, and it would go away. The night before I woke up unable to walk, with no feeling in my legs, and went to the hospital to learn I had a broken back caused by the metastasis, I remember standing in front the mirror looking at my body, and wondering why I was in so much pain. My whole chest seemed misshapen, and there were dark veins running in the direction of my left breast. Once I was diagnosed the oncologist even said that my tumor is not easy to locate. It was large, and flat, and just kind of blended in. Looking back, that firmness I felt around my periods was probably the closest I ever was to detecting it before it metastasized. But I did mention that to my doctor's, and was told it was pretty normal, just stop drinking coffee. So I don't know what else I could have done to catch it any earlier.

I recently reconnected with a friend and told her my story. She is 32, and said that she has similar symptoms with her breasts, pain, firmness, size difference, even chest pain. I don't want to make anyone paranoid, or turn them into a hypochondriac, so I just told her to see her doctor. She did... they told her to stop drinking coffee. Hearing those words again, made me shudder. I understand it would be unlikely, for a friend of mine to have the the exact same condition, but because I have it, there's no way I can sit here and say it's not a very REAL possibility. Because it is REAL for me. And the sad truth is that cancer IS almost that common.

So my dilemma is, what do I do with this? How can my story help? Especially since my story consists of me having next to no symptoms until it was already advanced! I don't know how that's supposed to help anyone? But I do feel the first step is putting my story out there, and seeing what comes from that.
 
 I understand the medical industry is not going to start doing mammograms on every 25 year old, with no maternal family history of cancer, who's breasts hurt occasionally. But maybe if people weren't only specifically looking for perfectly round marbles, or extra lumpy oatmeal, or knew that zombie veins on their chest might mean more than just poor circulation, and if doctors exams were a little less generic, and their patients concerns weren't dismissed due to age.... then maybe, someone, anyone, might not find themselves where I am now. And that would be something.
 
About the guest blogger:
Kourtney Logan Lampedecchio was diagnosed with stage IV HER2/neu positive breast cancer at the age of 27. Upon discovery it had already metastasized to her spine, deteriorating the T3, 4, and 5 vertebrae, requiring a spinal fusion surgery. Recently, 12 brain metastasis where discovered, and she just finished a course of radiation to treat those. Through it all, Kourtney continues to pursue her passions of spending time with her horse and dog, friends and family, who are her support system, and without them would be lost. She is also continuing to pursue her professional and academic goals of becoming a scenic designer for theatre, by working freelance in the Sacramento, CA area, and attending graduate school in the fall at UC Davis, where she is also currently undergoing treatment. She is now 29, and lives with her family in Placerville, CA. 
You can check out her blog at http://www.kourtneylogan.blogspot.com/
 

Thursday, April 22, 2010

Lessons Learned


 

I am done with treatment, well for the most part.  I take a pill everyday, not so bad compared to the chemo I took for 5 months.   

 
I have met many great people online, and through my podcast, many survivors who are going thru the same type of treatment I did.  I wish I had known about facebook and twitter during my treatment.  I think I would have had an easier time with it.  Yes I did have a positive mental attitude, but some days it was hard to keep that up.  It is hard when you are in the thick of it, that anyone could possibly feel as low or as tired or as shitty as you do.  Trying to explain it to someone who hasn't been there like a caregiver or friend or loved one seems ridiculous "They don't have cancer, how the fuck are they going to know how I feel??!!!"

Talking about it or being upset or bringing it up would just make me feel like my friends were thinking  "God there's cancer girl upset again."  As crazy as that sounds that is what I would think.  I know that was not the case, but in the moment, that is what I felt.

Now I see a friend of mine,  who I met on facebook, start herceptin.  She was nervous about it because of all of the side effects she had.  She had a rougher go of it then I did, she seemed to have a lot more side effects than me.  I kind of feel a little guilty, yes survivors guilt, that she has had more side effects than me.  I wish I could take those side effects away from her, so she could have more energy to spend time with her kids.  

We were talking about people calling us inspirational, as survivors we have heard these words tossed about.  Inspirational, brave

I don't see these words relating to me at all. 

I was told I had cancer

I was told what my options were

I wanted to live

Did I have a choice?  I guess I did.  I could have not fought cancer. That isn't my style.  I enjoy a good debate.  Hell, sometimes I will argue just to argue.  I wont back down from a fight.  

Inspirational???

Brave????
Nope.  Just me...


Mel is the producer/co-host of The Vic McCarty Show.  Listen Live Monday~Friday 10am-noon eastern standard time on wmktthetalkstation.com

Check out my podcast The Cancer Warrior on Empoweradio.com available on demand and on itunes.

Thursday, April 15, 2010

D'OUGH!!!



I still have side effects related to cancer.  Just another reminder of the cancer I had.

"Well you are cured now aren't you?"   Is something I hear often. Really? Last I checked there was no cure for any cancer.  No I am not cured.  I am in remission, in 2012 I will be considered cancer free, that will have been 5 years since diagnosis.  I am not cured.  The day there is a cure for my cancer, or any cancer for that matter I will be celebrating.

It seems that people assume that when you are done with cancer treatment you are done with cancer. 
That isn't always the case.  Side effects can linger for months even years after treatment. 

"Well you are done with treatment you are fine now aren't you?"

 
For the most part I would say yes.  But that is not always the case.

Those of us who have these side effects get used to them.  I have had side effects last longer than treatment.  My neuropathy for example lasted for 20 months, treatment for 14.  Every so often I feel a twinge in my foot.  

Hot flashes are another side effect I have.  I am not going through menopause, it is a side effect of tamoxifen, a cancer fighting drug I am taking until 2013.  I kind of wish I was going through menopause.  I never really wanted to have kids, as a matter of fact when the oncologist said the chemo might put me into early menopause I actually said  SWEET!   I am sure that was not the reaction my oncologist was expecting.


Trying to adjust to this "new normal" has been difficult.  Survivorship has been difficult. It takes a while to get back to how you felt before, or even close to how you felt.

Depression is a struggle for me.  Cancer makes sense to me, in a way, there is a tumor, you remove it, cancer's gone.  Depression, oh well its the serotonin and norepinephrine, in your brain, its a chemical imbalance, it might go away it might not.  Anti depressants work for me.  Its not something you can just "get over."  Some people have it, some people don't.  One of the list of the many side effects on the menu.  Still wishing I could have picked and choosed my side effects.

Because of cancer I am in debt, not as bad as some, worse than others.  Another reason for my depression. 

"Well there is nothing you can do about it so don't worry about it."  is what people tell me.  Ok those damn debt collectors who call expecting something, when I have nothing to give them.  Easier said than done.  When the blinking light on the answering machine reminds me that So and so called from some collection agency and they want their money.  "I want to give you your money I don't have it/"  "Can't you just make a small payment."   Wow what a great idea, I never thought about that.  I am actually being sued by a credit card company for 1400 dollars.   I owe the hospital ten times that amount, they aren't suing me.  

What's in your wallet?  

Uh not much....


Mel is the producer/co-host of The Vic McCarty Show.  Listen Live Monday-Friday 10am-noon on wmktthetalkstation.com

Check out my podcast The Cancer Warrior on Empoweradio.com  Available on demand now and on itunes