As much as I’d like to always just make you guys (and myself) laugh, I’ve got to be honest.  Over the last week, I’ve had mounting anxieties, and last night the fear in my heart erupted.  All over Josh.  In the form of my tears and snot.

You see, lately, I’ve been on the up and up, and, for the most part, I’ve been happy.  Happier than I’ve ever been, actually.  Mostly because I appreciate my life so much more now.  And I really know who I am.  Also, probably in part due to a hefty dose of denial.

But then three things happened, and I came crashing down.

  1.  Sam died.
  2.  I had a dream about an old classmate who passed a few years ago.
  3.  I started reading stories of women who are metastatic — like on purpose.

Let’s just start from the bottom up.

When I was first diagnosed, I wanted NO information.  I am aware of how stupid this sounds and really is, but I just couldn’t handle it.  All throughout treatment, I did the opposite of what most women do.  I avoided doing my research.  Oh, at times, I tried because I’ve always been a studious girl.  I read much of Dr. Susan Love’s breast cancer bible, but it only served to scare the living crap out of me.  The last straw for that book was when it “taught” me that women who found their cancer while breastfeeding had poorer outcomes (or you know, died more often).  Nope.  Just, no thanks.  I can’t do anything to change that so let’s just not even discuss it.  Please and thanks.  And back to the library you go, Dr. Love.

Part of the reason that I started this blog was because I couldn’t handle reading other people’s horrifying experiences with breast cancer.  I think a lot of people draw strength from identifying with others, but for me, it was like watching Friday the 13th before my very own stay at Camp Crystal Lake.

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It is only now that I am trying to peek into the breast cancer world a little more.  I have been researching VERY slowly, and in doing this, I have stumbled across some blogs of women whose breast cancer came back and are now terminal.  And I can’t stop reading them.  They often take my breath away and always strike fear in my heart, but I regularly check on these women.  I feel like I owe it to them.  I feel like I can’t just shut them out because it scares me.  What if that’s me someday?  I’m not sure how much good it’s doing me now though.

Also, I had a dream about a former classmate (who I was friends with in middle school and early high school) who died a few years ago.  In the dream, he really just said hi and said he had to get back to work on the yearbook.  I was delighted to see him because I knew it had been a while.  But when I woke up, I couldn’t shake the feeling that maybe Chris was trying to tell me something.  Give me a warning or welcome me over or something.  I also know that this is ridiculous.

But here’s where it’s not ridiculous.  On Monday night, I went to Sam‘s wake.  Seeing that sweet little boy like that knocked the happy denial right out of me.  You don’t get more real than that.  And seeing the grief of his parents reminded me that cancer just doesn’t care.  It really just doesn’t give an eff.  Like Miley Cyrus.  Or my daughter when it comes to wearing pants.  (Again, here’s the link to donate to Sam’s family.)

So for the past few days, all my pains = recurrence.  Because, obviously, pain + wild anxiety = my children growing up without a mother. Gah.  Does anyone have a chill pill?  Not Ativan.  I’m already taking that.  Like, a legit chill pill?

My mind is wild, frantic.  I’ve taken two steps forward, one step back.  And I wonder if that’s how the rest of my life will be.  Will I have to beat back this fear forevermore?  Will I always have moments of wide-eyed panic and silent alarm?  Will I have to learn to manage my ice cold gut every time I have a random ache?  Because, let me tell you, it’s a deep, dark rabbit hole, you guys.

I guess, as long as I’m taking two steps forward, one step back, I’ll eventually make it to a less fearful place.  And truly, in whatever state of mind I’m currently in, I am just so happy to be here.  To be alive and with my family.

But seriously, any advice from you “survivors” out there?  Or anyone else?  Bueller?

19 comments on “My Imperfect Storm.”

  1. Heather, you made me laugh at tears and snot. The fact that your words are so real make me smile and chuckle at your humor. I guess our fear will never go away as we know that breast cancer is real and reality is that it can come back. Cling to this. 2 Timothy 1:7 But God does not give us a spirit of fear but of power, love and of sound mind. Keep you chin up and enjoy healthy happiness!

    • “But God does not give us a spirit of fear but of power, love and of sound mind.”

      Thank you!

      And thanks for validating my fear. Although, it needed (I’m back out of my head for now) tempered, it’s real, and I don’t think people actually know how scary breast cancer can be.

  2. Hi Heather! First of all, I am very sorry for your losses. No child should be going through this. It’s just awful and sad. My condolences to the family.

    Like you, I was dx at the age of 32. I started a blog last month because to be honest with you, I find survivorship to be the most challenging part of my cancer journey. I am 3 years out from dx, and currently taking Tamoxifen (for 10 years!). I have no children. I want a child badly! Anyway, not to bore you with my story…to get back to your post…be careful what you make yourself believe.

    Unlike you, I read everything from the start. I even joined a group of 200+ breast cancer patients with all kinds of stories. I am the type who likes to research. I want to know it all. I understand how scary this can be for some people. And it must be so difficult for you because you have children. What I continue to tell myself is: I am NOT a statistic. We are all different and react differently to treatments. I say it is good to educate yourself so you can make the “right decisions” when it comes to your health. But you can’t compare your case with other people’s cases because we are all different.

    Denial packed up his bags and left the day I was diagnosed so I am becoming more aware of my reality, and more accepting of it too. I believe with time, you will feel more confident and more comfortable when handling and facing cancer-related situations — whether it is good or bad. I realize the problem with me is accepting death — and perhaps this is everyone’s problem. It’s no longer too difficult for me to talk about it. It was before. This doesn’t mean we will be gone tomorrow. You can live a very long time. So can I. But we don’t know how long and we never will. This means we take today and make the best of it. Remember, you are not a statistic. You have done everything you could possibly do to survive, and continue to do so. Know in your heart you will be OK.

    You remind me of me with these strange dreams. We convince ourselves is a sign of some kind. But why do we always have to go to the dark side? why couldn’t you believe that perhaps your friend is telling you he is proud of you and he is watching you? Perhaps you go to the dark side because this is your new comfort zone — to be prepared because of what you just went through. The reason why I go to the dark side is because I feel better that way. In a strange way, I convince myself of the worst case scenario so that I don’t get dropped and hit the ground like I did when I was diagnosed. I think it has gotten better though but the worry will always be there.

    Oh boy! I just realized I wrote a lot. I can go on for a long time on this subject. Survivorship is challenging. You were in a “military mode” in order to take care of yourself. Now that the war is over, you are just realizing what just happened and the seriousness of it. This is also why your husband feels stressed and tired (read other posts from you!). It will take some time for your “new normal” to settle in. It will happen, trust me. This is a process. Remember it’s not cancer you are fighting anymore. It is the mental game. And this you have control over.

    We have a lot in common, BTW. I was dx with the same type of bc as you. I am sure we will read more of each other.

    P.S. I love Ativan!! But I also try meditation, exercising, writing…among other things. This has helped with my anxiety.

  3. I hear you. My “survivor reassurance” is that the fear gets weaker as the days pass. Believe it or not, you’ll curse yourself when you discover you are taking things for granted again. You’ll be shocked when you realize you’re making lots of distant future plans without a thought about being sick again (said plans will have nothing to do with future MRI appointments).
    My coping method: give it to God. He is carrying you, your family, the women you’ve been reading about, Sam’s family, everyone. He’s got the whole world in his hands… Hey, that should be a song. 🙂

    • “You’ll be shocked when you realize you’re making lots of distant future plans without a thought about being sick again.” <---- Yes, please! Thank you, Liz, for the reminder to give it to God.

  4. My mother had breast cancer when I was a sophomore in high school. She went through chemo and everything. She has been in remission for over 15 years now. I can tell you that she is diligent about the foods she eats and making her yearly check up at Barnes. She makes them read it right then and there before she even leaves the building for peace of mind. Yes, it can come back, but it can also not come back. Don’t let fear run your thoughts.

    “Live in the now” – Wayne’s World (which really, shouldn’t we all be living through WW quotes 🙂

    • Thanks, Kelly. I love to hear about your mom and women who are doing so well years later. It’s too easy to focus on the ones who aren’t!

      WW, yes!

  5. I think we “hunker down” to tunnel vision when we are going through treatment, so lots of this stuff comes up after we start getting better. It did for me, that’s for sure. I’m 5 years out and I can say it has gotten better. I get a weird pain and my brain still goes there, but I don’t stay in that place. Because I/we can’t live in fear forever; it will just make us sick again. After treatment I promised myself that I would limit what I added back into my life – I wouldn’t overschedule again. Ha! I’m back to being my old over-extended, planning for the future self. It’s really great.

  6. I was one of those…you know, the cut and dry diagnosis and treatment that was popular at the time, 2007. I did all the research, I knew the odds…and so on and so forth. I logged onto blogs..found out most of them didn’t apply to me and I went on my merry way. When I got the word of recurrence just a couple of years later, I got pissed and decided to change some things in my life, take charge of my health (physical, mental, emotional)…and take each day as it comes. It’s like missles some days…and then, it’s another day and you’ve got to figure out how to handle it like a “normal” person. I still get angry with people who complain about stupid stuff…I’ll never feel different about that and I don’t wish horrible things on them so that they’ll truly know what a “bad” day is. I deal up close and personal with people dying from cancer …family, friends, friends through mutual diagnosis, so on and so forth. Young ones dying is extremely difficult and there is just no comforting words for those parents. Just knowing how much we grieve over someone else’s child gives us just a tiny fraction of the pain they must feel. Cancer is a hateful, vengeful, ugly beast. I will never see any good in it, nor will I see any good that comes out of it. I can’t spin anything that much to see a positive in this horrible disease. That being said…I don’t know if you ever get over being suspicious over a new pain or lump or bump…but being proactive is not bad…being consumed is. You will find your way..you’ll see. I am stage IV…I know my future according to statistics…but those stats aren’t me, so I’m kicking ass and taking names. Oh, and I’m living a full life, enjoying my friends and family, not sweating the small stuff and making plans…lots and lots of plans.

    • Thanks for this comment and your support. Keep kicking ass, taking names, and planning. You are inspiring!

  7. Tough stuff, Heather. We never know God’s plans and He works in mysterious ways. But He’s opened the door for you to use your amazing gifts and experience through this trial to benefit hundreds of others. You’re just getting started, and I think He has big plans to continue to use you for many years to come because you’re such a beautiful testament to what life on this planet is really all about. I pray that He will give you peace through the scary bumps along the road.

  8. Love your blog. I call it going to Crazy Town. I typically would visit Crazy Town in the middle of the night, when it was quiet, and everyone was asleep. There are no trains out of Crazy Town at that time of night. One night I woke in the middle of the night and was convinced that a big black/brown spot on my chest was a new cancer. It turned out to be a piece of a chocolate cookie that had fallen and dried on my chest. How crazy is that? July of 2014, I had my last Herceptin infusion. I used to visit Crazy Town quite frequently right after treatment. Now my visits are far less frequent. There are very few things we can control in life. Trying to live in the moment and keeping a good sense of humor has definitely helped me. I see from your blog you don’t lack a sense of humor. Hang in there – that fear does get better with time. Best wishes to you and your family.

    • Thank you! I am back out of Crazy Town (thanks for naming this for me!), but I know I will return again and again. It’s good to know it’s not just me. And last week, your chocolate cookie story really made me laugh / helped me. I FEEL YOU on that night. It’s irrational fear. Glad to know it gets better with time. Thank you, again!

  9. You’ve just described very well what all of us cancer survivors go through. I can’t remember when you finished your treatments(MY chemo brain) but from my own experience living with the fear gets easier in stages. I am 3 years out of being diagnosed (stage 3a, grade 2, ER+PR +) & 2 yrs + 3 months out of treatment, discounting tamoxifen. The first year all I did was cry. The second year I started to see a little light at the end of tunnel but I awash still very scared & began to follow some mets blogs as well. People in my bc group at time thought I was nuts but I had to go there. I think it’s ok as long as it doesn’t completely overwhelm you. I stopped reading (mostly!) for a while & then picked it up again when I put more distance between diagnosis day and present day. It’s been the last year or so where I’ve started to live again & cancer isn’t top of mind every waking day. Don’t get me wrong, it’s there, deep down at the back of my brain & soul but it no longer controls me. I guess you could say I control it, to an extent? I’m still scared, I still read blogs(not just bc blogs), I still have flickers of imagining my two little guys growing up without their mother. But the difference is (for me)a bigger part of me is starting to realize i cant control what will happen。what will be, will be。sounds simplistic, i know。But i think its what happens to most humans。the psyche (universe,God,whatever you believe)takes over and lets you get on with your life。it knows we humans can usually only cope with so much for so long and then we have to turn it off and return to land of living。a new lanscape, sure but its still living!an analogy: when 9/11 happened it was horrifying, horrific, unbelievable。Almost 14 years later, how often do those of us who werent directly affected think about it? not because we dont care, because we couldnt function any other way! Built into our survival instincts。on a hugely smaller scale i think its the same with anyting horrific we face, individually or as a group。i really apologize if this is too abstract for you! its just how i see it, and it may not be the leasr bit helpful for someone else!

  10. A your Telegraph articles, you mentioned how you thought God had brought this cancer upon you and that it’s all in His hands. God was not taken by surprise by your cancer and if He wanted, He could cure you straight away. But, sometimes God puts us into situations only for the purpose of helping other people with the same problem. I think you have helped a lot of people with your blog and newspaper articles. I admire your courage and willingness to share your deepest thoughts and fears. I am a cancer survivor for 19 years now, I remember my concern, not necessarily for my impending death, but more for my wife and kids. I started fixing up the house and doing all the odd jobs I’ve been putting off for such a long time. I didn’t want my wife to deal with it. Scripture tells us, “In this world you will have tribulation, but be of good cheer, I have overcome the world.”(John 16:33). I’m praying for you.

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