- November 30, 2019 at 5:41 pm
I’ll try to keep this as brief as possible, but brevity has never been my strength. I was diagnosed with state 3c malignant melanoma (on my head and in one of my cervical lymph nodes) back in April and had surgery in May. I have been getting Nivolumab infusions every four weeks (I am scheduled for a total of 12) and have my 7th coming up on 12/16/19. I also have a second surgery on 12/6/19, as one of my more superifical lymph nodes near the original surgical incision swelled up in October and my oncologist thought it would be best to remove it all for a biopsy.
I was only 34 when diagnosed (turned 35 exactly two months after my surgery) and the old saying “you learn who your real friends are” has never resonated with me more. Don’t get me wrong, I have a few close friends who have been wonderful throughout this all, some of whom I haven’t even known very long (maybe a year or two), but even some of my family members have been less supportive than I thought they would be. I’m no saint, but if someone in my life was going through what I am, I would be there for them. I’m very loyal to people I love, probably because I’m quite introverted and only love a few people on this earth. I understand some people don’t know what to say, or feel uncomfortable around people with cancer because it makes them think about their own mortality, but man does it hurt. I’ve had a lot of people say really insensitve and ignorant things to me too, which I have seen in many cancer forums seems to be a trend.
I know I should have grace with people, but it gets harder and harder. I feel like I don’t have the patience to care about superficial nonsense, which seems to be the only things other people care about these days, especially with the pervasiveness of social media in our lives and the general lack of depth in our society. It’s all about having fun, feeling good, and making one’s life look as wonderful as possible. I call it Keeping Up With the Joneses 2.0. But I just don’t have it in me to deal with it anymore. I’m facing some serious stuff and have to think about how my life will be forever changed by this disease. That I’ll always be worried about my health even though before this, I considered myself to be a very healthy individual. I haven’t been perfect in my life, but since my mid-20s, I’ve been an avid gym goer, I don’t drink much, and I don’t smoke cigarettes (although I stupidily used to when I was in my late teens/early 20s and occasionally in my 20s). I also was never a regular sun bather, have always been pretty good about wearing sunblock (I wear it every day) and have never stepped foot in a tanning salon. I tested positive for the BRAF mutation and my dermatologist even said I have virtually no sun damage on my body and that the genetic component to my cancer is very strong. That actually scared me even more because I realized that even if I do everything “right,” this disease can still come back and probably will considering my advanced stage.
I should say that aside from my cancer diagnosis, the past year and a half has been particularly hard. My seven-year-long relationship ended in June, 2018 and I still live with my ex because I can’t find full-time work (partially due to my cancer treatment and partially due to the poor economy and lack of opportunities in my city), but even if I did find a job where I could support myself, I would lose my Medi-Cal benefits which are paying for all of my treatments. As many job seekers know, most jobs these days have crap benefits, if any, and I can’t risk losing my current ones just so I can make a little more money, which would be futile anyway because all of my money would be going toward my treatments. Nobody seems to understand this and I feel like both my ex and other people in my life think I’m just being lazy. In addition to my relationship ending and my uncomfortable living situation, I was passed over for a full-time position at the community college where I’ve worked on and off for 5 1/2 years (consistently for the past 3 years) right after I broke up with my ex in the summer of 2018. I was told that I was well qualified and that my interviews were excellent, but that it was just “really competitive.” They hired a girl who had quit working there over four years ago who decided to move back to town. I missed out on great benefits that probably would have covered my treatments, a $55,000 annual salary (right now I make less than $16,500, which is the income limit to be coverd under Medi-Cal) and a pension. And I have to see this person every day of my life while I continue to struggle emotionally and physically and she has gotten married (two days before my surgery actually) and is currently pregnant. I also had an awful rebound relationship right after my long-term ex and I broke up, which was extremely stupid on my part. He really affected my self esteem and I’m ashamed I let someone do that. He dumped me two days before Christmas last year, although in hindsight, I’m glad he did because I can’t imagine having someone like that in my life during my cancer diagnosis and treatment. I have also had a lot of relationships deteriorate, including my relationship with my aunt who is my only family member in town. I just feel so alienated from everyone. Some people haven’t contacted me in months. Some just say insensitve things that I can’t seem to get past. They don’t understand and the more they try to “help” by saying stupid things like, “well at least you have a good kind of cancer. It could be worse, you could have pancreatic cancer,” or “well, you did spend a lot of time outside,” (which isn’t true at all) or “you’re going to beat this,” the more I pull away. And the more I pull away, the more isolated I become. I know it’s a vicious cycle that I’m perpetuating, but I just don’t know what to do anymore. I’m looking for a therapist, but the list is long and I have a lot of research to do.
Thanksgiving was hard this year. I hadn’t been in a “party” situation since everything happened and I realized quickly as everyone arrived at my friend’s house that I wasn’t up for it. I actually ended up leaving without saying goodbye, which I realize is rude to a lot of people, but it was either that or bursting out sobbing in front of 15 people, some of whom I had never met. My ex came with me because he has no family or many friends in California, plus we’re still close friends. Listening to people talking about their great jobs and how happy they are, couples having babies and everyone fawning over the pregnant woman, and just being around happy, married couples while I sat across from the person who wasted seven years of my life and who never wanted to progress with me was excruciating. Not to mention that people were picking on me constantly that day. One person even joked about my cancer when I told him to stop smoking around me. He said, “well you already have cancer so what does it matter!” Another one joked about how he didn’t believe I made what I brought over because it was so good (but not in a complimentary way. He was insulting me, as in “there’s no way YOU made this”). I realize I’m a little more sensitive right now, but I felt these comments were beyond inappropriate. I don’t even know these people THAT well. All of the superficial conversation seemed cacophonous at one point and I hid in the bathroom trying to stave off an anxiety attack and fought back tears. I managed to eat, but left shortly after because I just couldn’t take it anymore. I cried all the way home and went to bed at 7:30pm.
I feel like a lot of stories I found at first on the Internet about cancer survivors were told by people who found some enlightenment in their experiences. That they have a new lease on life. They feel stronger and more in tune with what’s important. I’m sorry, but I just don’t find cancer enlightening at all. I feel scared, alone, and less confident in myself as a healthy person. I have managed to get back to the gym and am in pretty good shape considering everything, but even that isn’t completely mitigating my feelings of despair and loneliness. I feel myself losing my patience with people more and more. I also feel like other people who have had cancer won’t take me seriously because I don’t seem “sick enough.” I have a nice full head of hair (except for the huge scar from my surgery that I can luckily hide and a small scar on my neck), am relatively attractive, and I have been tolerating the Nivolumab infusions pretty well aside from some minor side effects. Of course I’m grateful for those things, but I definitely think people don’t take my situation as seriously because them.
Thanks to anyone who had the patience to make it through this rambling post. I appreciate your time and wish you the best in your own journey fighting this insidious disease.
- November 30, 2019 at 6:52 pm
I understand the awful feelings associated with this beast. It seems like sometimes nothing is going right, but then you wake up the next day and keep going. It sounds like you might benefit from being in a support group. Have you considered looking for a group? Most treatment centers have resources. It might be something to think about. I hope and pray things start looking up for you and you can start seeing the light at the end of the tunnel. I am two years out from a stage IV diagnosis and still standing! In fact NED!
Also, you might want to consider posting with a nickname, that way people can follow your story. They are more likely to respond to someone who posts a name of some sort.
BubblesParticipantI am sorry you are feeling down. It is understandable. You have to realize that even those who are the “life of the party” have “down” times too – though perhaps they hide it well. And most folks just don’t know how to deal with their own discomfort around those in difficult circumstances. So, there is that.
- November 30, 2019 at 7:02 pm
You are correct. Life, especially experiences like cancer, changes you. I have LIVED with melanoma for the past 16 years. Much like you, diagnosed with Stage III at age 39 with 10 and 12 year old kids. UNLIKE you, there were no valid treatments available, so I did in fact progress to Stage IV with brain and lung mets in 2010. BUT!!!!!!!!!!!!!! In a lucky break, participated in a Phase I Opdivo trial later that year and I am still here, my last dose administered in June of 2013. NED for melanoma still. So….
1. Patients now have the option of effective adjuvant treatment and your odds of beating this disease are much better than you seem to be giving yourself.
2. Should you recur – which yes, is a reality with which you must live – you STILL have treatment options and reasonable odds to beat that recurrence.
3. I have more than 20 scars on my body and vitiligo from my treatment. Do I like it? Not in the least! Does it define me? Hell no.
4. Am I thankful to have had melanoma? Did it bring my life together and make me realize the wonder of it all? Absolutely not!
5. Have I lost those I thought would never fail me? Yes.
6. Have I discovered new strengths and amazing peeps who help me bring grace and beauty to my world? Yes. In spades.
7. Will it get easier? Sometimes. Sometimes not.
Here are some posts I have written over time spent LIVING with melanoma that may (or may not) fortify and build your spirit:
2010: Looking forward – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/09/looking-forward.html
2010, November: Thankful – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/11/i-am-thankful-for-loyal-friends-and.html
2011: The toll – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/07/toll.html
2012: I feel pretty -http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/03/i-feel-pretty.html
2012: I am not me anymore – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/07/i-am-not-me-anymore.html
2013: The light that shines – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/02/the-light-that-shinesdespite-cancer-and.html
2013: Ubuntu – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/04/ubuntu-oo-bun-too-i-am-because-we-are.html
2014: Tears and melanoma – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/tears-and-melanomatheyre-not-always-sad.html
2014: Real beauty – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/real-beauty-way-more-than-skin-deep.html
2015: My story – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/health-monitor-magazine-focuses-on.html
2015: What to say to a cancer friend – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/what-to-say-and-doand-notfor-cancer.html
2016: Ratties and hope – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/part-2-ratties-and-hope.html
2016: Don’t give up – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/dont-give-up-dont-ever-give-up.html
2016: Something good – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/something-good.html
2017: Bucket lists – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/01/melanoma-bucket-list.html
2017: Lucky me – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/lucky-me-im-53-living-with-melanoma-and.html
2018: Where I’ve been, where I’m going – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/where-ive-been-where-im-going-fractals.html
2018: Thanksgiving – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/11/i-am-thankful.html
2018: Scars – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/scars-are-more-than-skin-deep-love-that.html
2019: March Forth – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/03/march-forth-no-matter-tempest-that.html
2019: I arrived alive at 55 – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/08/i-arrived-alive-at-55.html
My latest is posted above.
I am glad you reached out. There are many caring wonderful peeps on this forum. Perhaps a local counseling service or cancer survival group may be helpful to you. My best advice is – LIVE! Life comes with no guarantees. But it is a beautiful ride – despite occasional pain. I wish you my best. Celeste
JudiAUParticipantCancer is so hard. It seems to interfere with everything. All of your feelings are normal and valid. It take a long time to process, anger and disappointments are normal. Have you considered a cancer support group? I assure you, no one things you are “less” because of your diagnosis and you would be welcome. How about some individual therapy, to help you process?
- December 1, 2019 at 5:06 pm
I simply try to focus on the day to day.
You might consider thinking about things broken up by time. What would make you more economically viable. What what improve your living situation. What would make you feel like you had more agency over your live. Now might be a good time to be be in school, volunteer etc.
SdmotorcopParticipantIt sounds like we are on the same path. I was diagnosed stage 3C in May of this year. I have my 6th monthly dose of Nivo in a couple of weeks. The doctors want to go after a deep node in my thigh that is “rounded” whatever that means. PET scan and ultrasound in a week. I’m lucky that I have a wife and grown kids to lean on when my days turn turn a little dark or the appointments become a bit overwhelming.
- December 2, 2019 at 12:15 am
I understand about friends.. I think a lot don’t really know what to say. I have heard the “you don’t look sick” or “it must not be very bad cause your hair is not falling out” comments. I just chalk it up to people not understanding melanoma or the treatments we endure.
One day at a time.. I look at each new day as an adventure….. good, bad or ugly.
Gene_SParticipantHello, I hope I can ease your mind a little. I do agree with the others to see if you can get into a cancer support group as it at least has many people that are going through the same thing as you.
- December 2, 2019 at 3:17 pm
My husband started out as a 3C melanoma cancer patient as well in 2008. He did progress to stage IV in 2010 and started in a clinical trial in 2011. Back then they didn’t have the combo drugs so he was on Yervoy (back then it was called IPI) and GMCSF. He did have some side effects and to this day takes a small dose of prednisone daily as his body does not produce cortisol. He became NED (no evidence of disease) in July 2012 and has remained that way for over 7 years. If you would like to read more about his journey you can read his profile.
Judy loving wife and caregiver to Gene (Stage IV and NED for over 7 years.
jbronickiParticipantDefinitely could relate to everything you wrote and you have absolutely every right to speak this out loud. I can also relate as just a human that struggles with minutiae of life and superficial conversations and the sometimes idiocy of humanity and the ridiculousness of systems. In my life, I’m certain of two things, the importance of support groups and George Carlin (he taught me it was ok to question the status quo and observe the ridiculousness around us and be ok with my thoughts even if they didn’t align with others and weren’t always fluffy and positive and be ok if not everyone liked me when I say stuff (still working on that one)). By nature, it is hard for some of us to reach out, it’s just not in us to want to burden others and I always felt like I should be dealing with things better than I was (faulty thinking), but a support group where people just let you talk and have the same overwhelming experiences is invaluable. I was in support group for panic disorder in my 20’s, it was eye opening. I thought I had everything together in my early 20’s and then life decided to set me straight for a decade or so. This disease alone would overwhelm anyone and then you add having to fight the medical system and the unfair job situations, it’s a bit much for sure. Many many hugs, thinking about you. I have felt loneliness and despair, and just want to tell you, you are not alone. Thanks for saying it like it is, it helps us and hope it helps just to let it out!
- December 3, 2019 at 2:41 am
MelMelParticipantI agree with everyone’s suggestions but would also like to add a few wise words about what life has taught me. Try to rely less on people and what people around you think. If one seeks or thinks people will make them happy, they will end up disappointed because people will not. The only way one can be happy is to find this happiness within themselves and only you can do that. Once you are happy, other things in your life will fall into place. Without risk there can be no success. Rather than seeing how your ex partner “wasted” seven years of your life, look at it in a different way. Think of all the great memories and experiences you have had, all of which have allowed you to grow and become YOU! You are wiser and better off now. I find getting a melanoma diagnosis (my being stage IV) as a wake up call to take care of myself and my body. You need to concentrate and do the same. Focus on doing things which make you happy and not satisfying others. Have a few friends who you can confide in. Look at this as just one stage of your life, one bump in the road. It’s difficult but possible. Look at all of us on here. If you can spend time with animals, volunteer. They have endless amounts of love which they gladly share. Keep busy and occupied and before you know it, when you least expect it your life will turn around and you will work towards your goals and aspirations. Remember, when there is life there is hope. You are young and your whole life is infront of you and the best still to come!!!
- December 3, 2019 at 3:39 am
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