The importance of vigilance

Kari's survivor story

Thanks to Dana Farber Cancer Institute for allowing me to repost

Bio of the host of video:
Dr. Kenneth Miller, medical director of Dana-Farber's Lance Armstrong Foundation Adult Cancer Survivorship Program knows that the end of cancer treatment is not the end of the cancer experience. As an oncologist, and a husband of a two-time cancer survivor, Dr. Miller knows that survivors need to find a new balance in life, one that recognizes where they’ve been medically, and where they’re going for a healthy future. The Living Well Beyond Cancer video series available for viewing online at www.dana-farber.org/livingwellbeyondcancer features Miller interviewing experts from the fields of oncology, psychology, nutrition, and more, outlining many of the issues survivors typically face, from fear of recurrence to long-term health concerns to creating a wellness plan.

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

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

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/
 

Battling your demons

This blog entry has been a long time coming.  I have been depressed.  I didn't really realize it until just recently when I talked to my doctor.  It may come as a shock to a lot of people, as I hid it very well.  

Looking back I think it has been at least since December since the depression started to affect me.  I used to be a gym rat, but I haven't really been to the gym in a long time.  Oh sure I can make excuses like I was tired or work, but I face the fact that it was depression.

My doctor asked me if my depression was so bad I couldn't get out of bed, I laughed to myself, thinking, well I wouldn't have a job if I couldn't get out of bed now would I?  I still have my sense of humor.

I would do just enough to skate by at work too.  You are probably thinking, uh you work at a radio station, you don't have the missile launch codes or anything like that how can you just skate by?

Well I would do just enough.  On the outside to everyone else I looked happy and fine, in my head I was freaking out over everything, everything would make me upset.  You name it, it would probably upset me.

Cancer is easy for me to understand.  Cells reproduce into a tumor. Take out the tumor, no cancer.  In the simplest of terms right?

Depression, as described by dictionary.com is:

sadness; gloom; dejection,  a condition of general emotional dejection and withdrawal; sadness greater and more prolonged than that warranted by any objective reason

That explains it, that is how I felt.  Its not something you can just "get over"  Believe me I tried.  I had hoped it was just some passing thing.  That the chemicals in my brain would be jacked just enough to make me upset and sad. 

I tried to read about it Serotonin-norepinephrine are the chemicals in the brain, but blah blah medical terminology, I got distracted.  

People have said to me when I tell them I have been depressed, well its no wonder you have been through a lot.  Yeah but I should be able to handle this shouldn't I?  After all its been over a year since I have been done with treatment.  I shouldn't be feeling this way.  At least that is what I would tell myself, fighting my own sad or angry thoughts, trying to make them stop.  I survived cancer, and the treatment and now some chemicals in my head aren't reacting properly.

I was taking one pill (effexor) once a day to deal with my depression (as I said before in other blogs, I have a hard time asking for help) 

I met with my doc for a routine appointment and she was concerned about my mood.  Even that pissed me off a little (that should have told me something I thought to myself what do I have to be a happy freaking monkey all the time?)

The final straw that made me realize I needed help was when I thought someone unfriended me on facebook.  I started to cry.  I was at work and doing a live airshift.  I texted a mutual friend of mine and we chatted about it.  Turns out our friend's facebook page was hacked and she had to turn it off.

The next day I called the doctor and asked if I could take effexor twice a day.  It has made a world of difference.  

The moral of my story:  Don't be afraid to ask for help if you need to.  Your doctor, your priest, a therapist, whomever.  You are not in this fight alone.  At times it may feel like it is just you against the world, but that is not the case.  

Trust me, I know.

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

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