“Losing Yourself”

It’s fitting I’d find this quote on Instagram today, because I do feel like I’m “losing myself”.

It’s partly due to losing connections with certain people who I’m supposed to consider family, as well as the loss of some friendships. These relationships were important to me in the past. As I noticed these people distancing themselves, I didn’t think much of it. I had a lot of other people supporting me.

As always, my fellow cancer “thrivers” understated the most. I mean, they had been in the trenches too. Even if we weren’t in that metaphorical “foxhole” at the same time, they know everything I go through, all the terrible things that run through my head way too often. They know that sometimes even replying to a text message is too much. They have perspective others in my life don’t and hopefully, for their sake, never will.

I could only wish my biggest complaint was that my nail polish chipped right after I left the salon. Or, that my order from Amazon came late.

So, No, it “literally” wasn’t the worst day of your life because say, your boss yelled at you. Yes, it sucks, and no one wants that. “Literally” the worst day of your life is when: you hear “you have cancer”; or you have to say “goodbye to a loved one; or that lump they found is not just cancer, but that you’ve actually been diagnosed with “terminal cancer” and you should start “making arrangements”. I’d say picking out my own coffin would “literally” be the worst day of my life.

I know you don’t have to suffer tragedy to empathize. I also know that people are people, and what seems like a bad day for them isn’t what a bad day for me is like. My bad days usually include, falling flat on my face just trying to get up from the toilet, or being so fatigued I can’t walk without my cane and someone or something next to me. The really bad days include trips to the ER, or so many doctors’ appointments back-to-back, I leave my apartment in the early morning and don’t get home until after dark. Of course, the really really bad days are spent in the hospital (and I’ve done my tour of so many a friend joked I should start a blog on the food service in each).

Anyway, back to “losing myself”. Throughout these last 5 1/2 years, I’ve remained consistently positive. Sure, I’ve had bad days, some bad weeks, but now it’s very, very different.

I’m heading into procedure Number 6 on Thursday.

Well, this being “Black Friday” seems quite fitting. My last post discussed how I’ve now become one of “those” people who hates the holidays. I was never that person. In fact, I couldn’t stand those people! Since my diagnosis in 2014, I’ve lost count of how many holidays I spent in the hospital, or separated from my husband because MY sickness caused problems with his family (ya know, when you get married you think, “oh, now we’re all going to be one big, happy family!” Ha. What a joke!)

Some fences have been mended. Once those relationships are fixed, then others suddenly crash and burn. People you thought were “family” are no such thing. Friends you thought would stick by you, don’t want to be around you because it’s “depressing”.

I do know ultimately that removing the toxic people from my life is better. However, that doesn’t mean it doesn’t hurt losing more and more relationships. I find myself becoming angry and bitter. It truly feels like I’m losing more and more of myself – that strong-willed “have no fear” cancer thriver. I just hope I can find the will to find myself again.

Relationships, “It’s Complicated”

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I could write for days on this topic… but, for now just a brief post.

When you’re the sick one, so often YOU have to “manage” all the feelings, emotions, mental state of family, friends, significant others, etc.  Yes, they love you.  Yes, they’re concerned about you.  Yes, they worry about you.  Yes, they mean well.

Yet, unless you’ve been there, it seems like so many of our loved ones don’t understand that while we’re going through physical, mental and emotional hell all of THEIR concerns and worries also get projected onto us.

If I had just a nickel for the amount of times I’ve had to reassure, or at least tell those around me, “Don’t worry.  I’ll be okay.”  Well, I’d have a lot more money in the bank!

It breaks my heart when I hear people, who have battled this disease and come through it, talk about all the people who walked out of their lives when they got sick.  The healthy ones who “couldn’t handle” it!

Closing in on six years in this “Big C Club”, I’m only now beginning to understand why that happens.  Ultimately, most people act weak until they have to face something tragic, go through something that challenges them to their core, or somehow become aware/enlightened of their own inner-strength through mindfulness or meditation practices.  We all have this strength.  Yet, so few people are aware of their inner-power, i.e., the power of our true spirit/soul/nature/whatever term you choose.

Honestly, before I got sick, I absolutely loved the holidays.  They’re a time we should be happy, joyous, surrounded by those we love and who love us.  I could never stand the people who complained about how “stressful” they were – it’s the exact opposite of what the holidays were meant to be!  I relished in trying to find that perfect gift for everyone.  I would sit there with such anticipation, so beyond excited to see the reaction on loved-ones’ faces when they’d open their gifts.  Decorating my Christmas tree every year with either “Elf” or “Christmas Vacation” on the TV has been my own little tradition since I got my 1st apartment.  I loved having my “girls’ holiday dinners” with my close friends.

Yet, these past few years I’ve dreaded the holidays.  Besides the fact that some medical catastrophe always seems to creep up around November/December, or around Easter especially.  Well now on top of all that, there always seems to be some kind of family-related “drama” – and if it’s one thing in my life I do NOT want, it’s drama.  It all circles back to the sad reality that when you’re sick:

  • Some people will inevitably turn their back on you because “they can’t handle it”
  • You, despite being sick, have to inevitably “manage” other people’s emotions and feelings
  • You will be a “topic of conversation”, like it or not
  • How many times will I have to answer, “How are you feeling?” though truthfully no one really wants the hard-nosed truth.  Imagine sitting around the table, while that delicious turkey is being carved and answer, “Well, I feel like absolute s##t almost everyday.  I struggle to just walk to the bathroom.  I sleep until noon because my body is so treacherously fatigued that if I wakeup any earlier, I may fall.  I can’t go outside because the cold air seeps itself down to my bones and my entire left side becomes completely rigid.  I have headaches almost everyday that debilitate me.  And, I’m one of the lucky ones!  Someone I knew just died of cancer.  But how are you?”  Yep, your family will really want to dig into those mashed potatoes and gravy after that…

So, yeah, as if cancer doesn’t suck enough, it makes relationships pretty “complicated” to put it lightly.

 

 

 

 

Helpful Resources and Information I Wish I Had When First Diagnosed

I intend to update this post constantly, as I am always coming across new and helpful resources.  I believe they can be utilized regardless of whether you are newly diagnosed, or a long-time member of the cancer club. 

This is in no way an exhaustive list, but these are some valuable websites and organizations I personally connected to.  I also don’t claim to be any type of expert!  You have to do what is right for you.  So, I have included some of my personal advice based on my experiences and those I’ve met along the way.  

One invaluable piece of advice I have heard over and over again, as well as advice I’ve given:  DO NOT GOOGLE!  Don’t get me wrong – it’s hard not to in our digital age.   Try your best to avoid the overwhelming urge to search out your symptoms, diagnosis, etc. on chats or less-than-established websites.  I have heard horror stories of patients googling one symptom, or one treatment option, and becoming convinced they will die in the matter of months.  I’ve also heard countless patients tell me that they entered an online chat on some random site only to feel helpless and more frightened about their diagnosis and/or prognosis.

On the flip side of that though, I have met a number of people, who did their own research on their disease and found cutting-edge treatment options.  That led to numerous conversations with their doctors and in some cases, changing doctors/hospitals after weighing all the options.  Again, do what is right for you.    

Overall though, I’d recommend focusing on sites such as:  American Cancer Society (cancer.org); National Cancer Institute (cancer.gov); Association of Cancer Online Resources (acor.org); and, the Mayo Clinic (MayoClinic.com).  They are the experts – not us.

For brain cancer-related sites, I rely on the National Brain Tumor Society (braintumor.org).  Disclaimer: I am heavily involved in NBTS, so I am admittedly biased.  Some other brain tumor organizations people have found helpful are:  American Brain Tumor Association (abta.org/) and Voices Against Brain Cancer (voicesagainstbraincancer.org/). 

I also found my hospital’s website, as well as their social workers, key resources.  Again, I am extremely biased towards my hospital (I wouldn’t go anywhere else), so I won’t include their specific link.  Although, despite how incredible my doctors and hospital are, I found that I had to be the one to reach out for these resources.  So, be proactive.  Seek out social workers.  Ask them for information and helpful sites, organizations, publications…  Be your own advocate.  It’s incredibly challenging, especially early on in your diagnosis.  Don’t you have enough to worry about?  I strongly believe it benefits in the end though.

I have mixed feelings about support groups.  They work for some people.  They don’t work for others.  My advice: Ask questions.  Find out as many details as you can about the group(s).  Weigh the options.  Are you open, or ready, to seek support from other patients/survivors?  For me, I was frightened to hear other people’s stories.  What if it made me feel even worse about this whole roller coaster, and more specifically, scare the hell out of me?  Would there be people there at the end of their battle, truly facing the worst, i.e. dying?  In the end though, the support group I joined helped me feel less crazy (Like, wow, other people have these crazy thoughts too?) and I connected with some really incredible people.  Specifically, I joined a group through Cancer Care (cancercare.org), and found them to be a good fit for me personally. 

If you are a writer, or just someone who expresses themselves better through writing (I am definitely one of those people), Cancer Care provides a fantastic program, Healing With Words.  They describe it as “an online therapeutic writing group… The group will be a space to respond to writing prompts, share work, and participate in discussion surrounding the writing process itself.”  I absolutely loved participating in this group and many of the articles and pieces I included under this category were provided by the social worker moderator.

Additionally, one particular organization I cannot say enough amazing things about is First Descents (firstdescents.org/).  I really don’t even know how to put into words what First Descents gave to me.  So, I’ll let their site best summarize what they do, in the technical sense.

“First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same….Each program is limited to 15 participants, ensuring individualized care, medical attention and an intimate experience with fellow survivors. First Descents programs are available to young adults with cancer regardless of their financial means. All meals, accommodations and program activities are provided free of charge, including travel scholarships, when needed.”

“At First Descents, we define our lives by the depth of our friendships, the adventures we live, and the moments of laughter, peace, fear, and humility we experience. We remember the important things; the defining things, like brilliant sunsets, big rapids, glassy waves, and endless rock faces. We’re fueled by the feeling of standing up on a surfboard for the first time, paddling through whitewater, and topping out on a climb, always surrounded by friends who feel more like family. These are the moments that define First Descents and the paradigms our programs seek.”      

Through First Descents, I spent one week with 9 other cancer survivors kayaking through the whitewater rapids of Oregon’s Rouge River.  These 9 people are now my FD family, and I don’t say that lightly.  I do not know where I would be without them, and without my FD experience.  The program challenged me physically, emotionally and mentally.  I absolutely came out of that week a better and stronger person. 

As a side note, I almost did not make my trip.  I was scheduled for my program in mid-August.  I learned of my recurrence in June, and underwent my 2nd brain surgery on June 30th.  I then began IV Avastin infusions and one week of intense, high-dose radiation.  Through every single step of the process, I feared I would have to cancel my trip.  However, through my oncologist’s tireless fight, all of my treatment was scheduled around my FD program, and I was thankfully approved to participate.  My FD experience was truly life-changing, and I will forever love my doctors for giving me that gift. 

On another side note, I will probably dedicate a number of posts to FD and what I gained from my experience. 

Basically, if you have the opportunity, apply for an FD program, like now!!!

                  

“The Things I Wish I Were Told When I Was Diagnosed With Cancer”

This is a piece, which I continue to come back to since cancer entered my life.  If I only knew these things when I was initially diagnosed…

The Things I Wish I Were Told When I Was Diagnosed With Cancer

By: Jeff Tomczek

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won’t help your recovery. Fighting for anyone to stick with you won’t cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You’ll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it “chemo brain” for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don’t understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You’ll cry together too. Then you’ll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don’t look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won’t have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won’t die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn’t be a game played on anyone’s terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won’t do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don’t have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they’ll forgive you. They get that you’re going through something they can’t imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.

You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren’t so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world — strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven’t spoken to since grade school will be in touch. Ex-girlfriends, former colleagues… even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

 

When you get to the other side you won’t believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You’ll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You’re going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You’ll be more productive. You’ll understand who truly loves you because they will still be there. You’ll want to meet new people that connect to the newly evolved version of your old self. You’ll want to let go of those that don’t “get” who you are now. You’ll feel a little guilty doing it. Then, you’ll move on. You don’t have time to waste. The greatest gift you’ve been given is that you now understand that and you’re going to make the most of every second. You’re going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.