Sunday, December 30, 2012

A Stage By Any Other Name....Is STILL Melanoma

When I was first diagnosed with melanoma, April 2011, I was told by my dermatologist and surgical oncologist that I was stage 2a.  I had to undergo a wide excision biopsy which left me with a 7 inch scar on my leg that looks like a shark bite.  I had a lymph node removal and was sent home to wait for results and recover.  It was the darkest time of my entire life.  I reached out on Facebookland and through the internet, I was led to several of my now friends.  They really helped me through the darkness and have been supportive and understanding.  I was told with stage 2a, that I was good to go, since my surgery got all the melanoma and the lymph nodes were clear, but I couldn't help but worry that melanoma was lurking somewhere inside of me, undetected, and was not going to be found until it was too late.  I have struggled with this so much, that in June I went to see a melanoma specialist at the University of Michigan for a second opinion.  They read my original slides, and told me I was not stage 2a, but stage 1b.  It was hard to adjust to.  Mostly because, I had also been struggling with the fact that some of my new friends where stage 3 and 4 and were going through horrendous treatments.  Some had passed away.  I felt like being a stage 1 or 2 was not significant.  I felt like I had no right to say I was a warrior.  I felt guilty.  I was going to a cancer support group and I met one of my dear friends there, that is fighting Stage 4 melanoma.  She has gone through hell and she does it with such dignity and strength.  I felt guilty that she was going through so much, when I was told I was done and clear.  I felt uncomfortable at the group since I was not going through a battle like they were.  I felt like I didn't belong.  I couldn't imagine going through what my stage 3 and 4 friends were going through, and I was scared to find out someday. 

Then one day, I realized that it was MY feeling that way and no one was saying that my journey was any less than anyone else's.  No one was telling me I was not worthy of being called a warrior.  I was accepted as a stage 1 WARRIOR by everyone.  We are all dealing with different stages of melanoma and I don't mean statistical stages, I mean different stages, just like in life.  We are all somewhere different in our journey, and we come together and support and love each other, even though most of us have not met before.  And would not be connected without melanoma.  We have a bond that is like family even though I may not talk to every one of my fellow warriors, I enjoy knowing how they are doing and being part of their lives. Supporting the ups and the downs.  Mourning losses, celebrating milestones, and sharing experiences, joy, sorrow, and tears.  Hugs and many prayers pass over cyberspace between us.  I personally, have felt nothing but support, until recently.

 I have never been so hurt and disappointed, since joining Facebook, as I was yesterday.  I was mourning the loss of my dear friend's daughter, who passed away, by spending time with my daughter out of the house away from Facebook.  I knew that I shouldn't spend the day crying, and instead I should grab every opportunity to spend time with my loved ones. But, I did cry. We went to see Les Miserables, and I cried a lot.  My daughter was next to me and I know how precious that is.  We had a great time together. When I got home, I went on Facebook, and that is when I saw this:

"Today I am going to tick people off...just because I can...and because I am angry because we lost "___" to Stage 4 Melanoma.  My heart goes out to people who have been diagnosed with Stage 3 and Stage 4 because they have a REAL battle on their hands.  People with Stage 1 or 2 have very good odds of living a NORMAL and long life.  I resent the fact they continue to draw attention to themselves while the real warriors are fighting for their lives.  I resent it when Stage 1 and Stage 2 people compare themselves to late stage warriors when they haven't had to FIGHT.  I had to get this off my heart."

Wow.

I have a huge problem with this for so many reasons.  I believe in freedom of speech, and this was (purposely) put on her personal Facebook page and not on a group page for all melanoma warriors in the group to see it.  First of all, she started off by saying she is "going to tick people off...just because I can."  So she was upset by a fellow warrior passing away and decided to tick off people that love that young warrior, by cutting them down?  I am not only offended because of what stage I am, I am offended that she, as a supposed friend, doesn't care about anyone with Stage 1 or 2.  We didn't go through a REAL battle?  We aren't still going through a REAL battle? Hmm.

Second, we all know what each stage means, and we all want to be stage 0, 1 or even 2...and stay there!  But, we all know one loose cell and a stage 1 can become a stage 4 in a heartbeat  Does this mean that any one person is less important than another?  I agree that our stage 4 warriors are fighting for their lives and I HATE it. I understand that stage 3 warriors are in trials, hoping that they will become NED and never advance to stage 4.   I DON'T understand the resentment towards others because of what stage we may be.  I feel that hate like that is not good, ever.  We should be "stage-blind" when it comes to melanoma, because stage can change.  It is melanoma.  That alone is scary.    I thought this person was my friend, but then I find out that she looks at us all as a stage and that we are only considered warriors if we are a stage 3 or 4 in her eyes.   It is her opinion and unfortunately it has hurt a lot of hearts.  The comments that proceeded were many and they have since been deleted.  I tried hard not to let it get to me, but it did.





I think we all need to bond together, and especially at a time like this, remain positive and supportive.  Anything less is just destructive and hurtful.  We are all fighting the same beast.  It is laughing it's ass off because we are destroying each other with negativity.  We need to remember,we all have special things and special talents we bring to the melanoma table, and we ALL have times when we are frustrated and angry.  We may not always see eye to eye and we may decide not to like what someone says, just like a family.  But if we start destroying the family, what do we have left?

And I had to get THIS off MY heart.




25 comments:

  1. Thank you, Melissa for sharing! I have had multiple melanomas....and have always felt "a part of" once diagnosed...regardless of stage...BECAUSE, I know that once you have a melanoma, it is a LIFE LONG thing we live with! I also know that once you have had a melanoma, our chance of having another is increased....and that I can never know what's around the corner for me. In my mind, I think of stages in terms of treatment protocol, rather than "in or out of the "serious" club"... Like you said, "We are all in this together!". XOXO

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    1. I agree RTR, we are all part of the melanoma clug and it is lifelong. I also think of stage in terms of protocol since I work in doctor's office. Glad to be in it with you!!

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  2. Great post because I've felt pretty much like you and I don't ever like to complain or even say much in the groups because I feel like there are so many so much worse off than me and I should just be thankful, but at the same time I am an anxious basket case a lot of the time since my August 2011 diagnosis b/c no matter the stage, its still very scary and very real and you still need the support of those that should understand!!

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    1. I hope that you can feel better about sharing your fears and experience in a group. I know, I don't much either. I blog and it is therapeutic for me. We all have the right to speak, and no one can take that away from us. xo

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  3. Is she for real? Wtf?!?! Having stage 1b has been the scariest thing in my life- how dare anyone say someone's cancer is not cancer enough! The scars are still here- the fear is here every waking moment and my surgery and dr exams hurt too! I thank god it hasn't advanced... Yet....and pray and support anyone dealing with any sort of live threatening or changing diagnosis. This has been devastating for me and my loved ones and for now are luckier than others but I know the possibility of being stage 3 or 4 and am taking every opportunity to tell others and give money for research when I can- that is an awful thing to say about your fellow man.

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    1. One bad apple can't spoil the bunch. We are still a family and every family has one. :) I am stage 1B too and I embrace it. I can't change it, but I can keep educating and hope that it saves another person from hearing those dreaded words...

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    2. Good for u! If I can keep one person from going through this then I would be happy. Nobody deserves to be scared for their life... Not stage 0 and not stage 4:/ hopefully this person can see how words hurt and wishes nothing but positivity to all cancer warriors

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  4. Melissa...I agree with you whole heartedly...I think that people who are stage 4 get jealous and tend to lash out not realizing that cancer is cancer and its always in the background whether we like it or not theres nothing to change the diagnosis its there st 1 or 4. Its what you do with the information its how you let it affect you yes st 4 its hard fighting but so is any stage just like you said isnt that how life is? My philosophy is take one day at a time for none of us are promised tomorrow enjoy it and be thankful were still here no matter what st you are..

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    1. I don't know about stage 4 people lashing out, I have never had anyone speak that way. My stage 4 friends are so supportive and often play down what they are going through to not upset others. They are protective of us lower stage warriors. I hope that you don't stay upset and that you instead continue to be supportive and use your experiences with melanoma in a positive way. If we all work together we can accomplish so much!! <3

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  5. I have no words for someone being SO freakin unkind!!! I was stage I for 10 years with the same feelings you described...I didn't go through enough to be a cancer survivor...then the cancer returned, stage IV and I almost lost my life. We all are in this fight together, any stage of melanoma is too much melanoma!!! any cancer is too much cancer, because a stage I can become stage IV.

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    1. I agree with you. I think that we need to remember that we are all in this together and we can do so much more if we fight together and not against each other. <3 I love your name Strong Steph!

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  6. It is so refreshing to me to read this post! I have honestly felt the same exact way since I was diagnosed with stage 1 melanoma. And have constantly got the "well at least it was stage 1." Well hell no- it was still cancer. I was/am still scared to death that it is some where else or going to reoccur. I am very grateful that is was stage 1 but it could have easily been at stage 3 or 4 just like anyone else. Melanoma is melanoma and it ALL sucks!!!!!!

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    1. It does all suck! I have been told that I should be happy that I am only stage 1 many times. I have always been happy about that, but I also feel guilty too. I hate that some of my very good friends are fighting for their lives and not one of them complains. They are truly strong, brave people that I admire greatly. Not one of them has ever made me feel like I was not significant. I will continue to fight with awareness every chance I get, because they can't.

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  7. From the first word I started reading, I could empathise with every single word you wrote Melissa - as I've mentioned before I'm upper level Stage 2 currently (NED)- "currently" being the operative word. As Melanoma Warriors we well know how in a heart-beat a "stage" can change. (that one little cell you mentioned) How our risk for further Melanomas is increased. One of the things I am most proud of and no doubt so are many others who have managed to, or, are still struggling to create a balance between getting on with life and enjoying all it has to offer and not letting this bloody beast invade our thoughts and feed on our fears.
    Melissa I can only but imagine the effort and passion it took to write this post, and I'm sending you the biggest hug from Oz for it. People like you inspire me to gain the confidence to get out of my safety bucket and DO SOMETHING helpful for the cause.
    Happy New Year sweet lady.

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    1. Thank you Rose! It is hard to balance living a normal life and not give into our fears. xo

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  8. I often say it's luck of the draw when someone has a melanoma removed. Melanoma is the common denominator for all of us, no matter what the stage. I'm 3A and respect anyone who is lower-you were fortunate enough to catch it before it advanced. No guilt there, you got it 'in time'. I waited too long. Awareness and saving lives needs to be the common goal for melanoma survivors. Thank your lucky stars you are clear now. I pray it stays that way for you and am proud you are speaking out!!!

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    1. Thank you so much! I do feel fortunate and I also feel that since I have been blessed with catching my melanoma early, I need to be out there educating and that is what I am doing! xo

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  9. Wow! I was diagnosed with two primaries within six months, one was stage 2A and the second stage 1B. I still need CAT scans every six months and since I have dysplastic nevi syndrome my chances of developing more primaries is pretty high so when I hear people saying that stage 1 or 2 melanoma survivors are not "real warriors" it pisses me off. We are all in this together. Melanoma is melanoma no matter what stage it was diagnosed at. We should all have a common bond with each other and support one another at every stage. Stage 1 and 2 survivors have the same emotions as stage 3 and 4. We are scared!! It is always in the back of our minds every single minute of every single day. My heart breaks for patients who advance to stage 4 or are diagnosed at stage 3 or 4 and they are true warriors, as are we. I hope whoever wrote that little blog realize that we are not comparing each other according to what stage each of us are in. We are all in this together. We ALL have to FIGHT this awful disease. He or she needs a real lesson on respect.

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  10. So I read this a few days back and couldn't leave a comment via my phone because blogger is retarded that way.

    Anyway, I wanted to say that you have taken what so many of us feel and have said ourselves only to be shushed or told "your one of the lucky ones". I don't think anyone who has had any form of cancer would agree with that statement. I hate that we live in a world where this disease is staged. I have learned over the years that while I am lucky to have caught the disease early each and every time, I myself like many others, have gone through our own personal hell of a treatment. So we haven't had to have chemo or radiation... our bodies are cutting boards and we have scars inside and out and the last person that told me I should be grateful I caught it early, I told them I would rather not have it all. Luck has nothing to do with it.

    So thank you my friend for writing such an awesome post that says what so many feel and relate too.

    Your words are an inspiration!

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    1. I would agree that I would rather have not had it at all! But, we have it and we are all in it together regardless of stage. I think we need to remember to be respectful of each other instead of hurtful. xo

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  11. wow, you wrote exactly what I thought. Glad I'm not the only one! I also found mine early - stage 1a. It was 3 years ago this month. For that person to say anyone below stage 3 is not a fighter doesn't know what I go through every day. It was not just cut it out and resume life like it never happened. NO! not a day goes by without damn melanoma on my mind every time I walk out the door! It changed my life and sometimes I don't think people understand. I think we can all comfort/support those fighting for their lives, continue to protect our skin, and educate the rest on sun safety and the dangers of tanning beds.

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    1. Exactly Linda. I know what you mean totally. Keep on educating my friend!

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  12. just found your post via @prettyinpale.... Amazing, and I'm sorry you had to read that from someone! I've felt exactly the same way. Whether you are Stage 1 or 4, we all went through that couple of weeks before we found out for sure. And in that interim period, you prepare for Stage 4. I couldn't even begin to comprehend the strength and grace someone undergoing treatment for later stage Melanoma needs... but I sure as hell can identify with that sick feeling in our stomach when it comes to the realisation that your life has changed forever.

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    1. Very true. I was so depressed waiting for my results, and then they sent them for a second opinion and I thought for sure it was my worst nightmare come true. I have so many friends that are fighting with stage 3 and 4 and I love them dearly. I have a huge respect for what they are going through, and all of them have been nothing but understanding and supportive of each biopsy I have had.

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  13. I was also stage 1 and have felt the same way. Especially when my family was fairly dismissive of everything that happened. I was diagnosed the day after my grandfather passed away and had my surgery the day before his funeral so they were a tad preoccupied!

    But what I wanted to add to the conversation is that each persons journey is unique. If you are diagnosed stage 3 and have lots of resources and access to experts and treatments your diagnosis may actually be better than someone diagnosed with stage 2 but no insurance, transportation, support, resources. So is the stage 3 warrior having a more 'valid' cancer experience than the stage 2 warrior? I think we can all agree that the stage 2 warrior is in a heap of trouble and has a survival rate that is affected not just by that number but by his circumstances.

    After my mole was removed by my family Doctor and was found to be melanoma I was immediately referred for surgery. Not to a dermatologist - to a plastic surgeon. I didn't know better and didn't see a dermatologist until almost a year later. I have a 3 inch scar. Not 6 inches. Not 7 inches. No follow up... nothing. Things are a little different in Canada. I live every day with the fear that the size of the scar - not the safe margins - was top of mind that day.

    Within a year a mole appeared in the scar and turned out to be benign. I have had another 2 removed since - also benign.

    Anyone who thinks I am not a survivor has a hole in their head!

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