the pass

I’ve been at the cancer center for nearly three hours. It’s a beautiful new facility. The waiting rooms are bright and airy and as inviting as they can be. I’m sipping the free coffee while I wait.

I hate it here. I hate everything about this place. I hate the tired eyes, the fear, the tears, the worn-out smiles. More than anything, I hate seeing the kids.

I rode in on the elevator from the parking garage with a little girl and her mom. The girl was no more than Katie’s age. She wore a pink bandana over her bald head. I’d gotten into their elevator by mistake – it was headed in the wrong direction. I gave an exaggerated shrug and joked with her that I had just wanted to ride with her for a while. She gave me a beautiful, shy smile. There but for the grace of God.

I’ve been texting with friends while I wait, trying not to think. I let myself get enmeshed in their drama. It’s a lot easier to think about right now than my own.

Once a year I come here, to the High Risk Monitoring Program. Once a year, I’m prodded and poked and checked. Once a year, I get a pass. Until next time.

The nurse finally calls my name. Well, half of my name at least. They’re big on confidentiality around these parts. She thanks me for waiting ‘so patiently’. I laugh and tell her not to make assumptions. She laughs too. She makes small talk as we wind our way down the long hallway to the examination room. I’m not listening.

She leaves me to change into a gown for the third time today.

“Front or back?” I ask. I used to try to figure it out. Now I just ask.

“Opens in the back,” she says as she pulls the privacy curtain.

I change, yet again. And wait.

I wonder why it is that in a breast cancer clinic, the gowns would open in the back. Does that make sense to anyone? I look around but find nothing of interest so I play with my iPhone. I chuckle and amuse myself by posting a status update on Diary’s Facebook page.

Proof positive that gender inequality is still alive and well — the mammogram. I promise you that if men had to smush their unmentionables seven ways to Sunday into a machine once a year to check for cancer, there’d be a laser version of that thing by now.

The doctor comes in to find me surreptitiously hitting “Share.”

We chat a bit.

She says, “So I hope you’ve had a good year.”

Not so much, doc. I don’t answer.

She swivels on her chair and looks right at me.

“HAVE you had a good year?”

Damn, what’s up with the direct question?

“No, not really.”

I try to laugh, but instead emit some weird, sharp noise.

“Oh, I’m so sorry,” she says. “Is there anything we can do?”

I wonder what on earth that might be, but thank her anyway.

We talk a bit more and then she asks me a more relevant question.

“Jess, have you ever considered adding in a yearly MRI to your monitoring program?”

My mom survived breast cancer. Her mother did not. In addition to my yearly breast exams at the OB-GYN, I come here to the cancer center once a year for a mammogram and exam. I see the same doctor, overseen by the same panel of experts, every year.

“Some people would rather not submit to the MRI,” she says. “It’s forty-five minutes face-down in a tube. But it gives us very different information than the mammogram. It uses contrast to really see the breast tissue and alert us to any changes or abnormalities.”

She goes on to tell me that the MRIs ultrasensitivity often leads to false positives. I tell her I’ve experienced the same with mammograms. This ain’t my first rodeo.

“So what do you think?” she asks. “Given your family history, it shouldn’t be a problem with insurance.”

I say the following.

“The reality is this. I have two little girls.”

My voice cracks. I’m not going to get through this without crying. Screw it. I don’t care.

“One of them has autism.”

I take a deep, jagged breath.

” Truthfully, I can’t imagine how their lives would work right now without me.”

She hands me a tissue.

“I come here once a year and each time I figure this is going to be the one. I hope that I’m wrong, of course, but given my history, it’s not exactly far-fetched.”

She doesn’t say a word.

“So that being said, if it does happen, I need to know that I’m doing everything I can to ensure that we catch it as early as we possibly can. So whatever there is that I can do toward that end, I will do.”

She hands me a wad of tissues. I use them to wipe my now soaking-wet face. I take pride in the fact that I remembered not to wear mascara. It’s the little things.

With no further questions, she orders a standing MRI that will alternate with the mammogram. One more safety net. I will now be seen every six months. Her voice cracks as she tells me the plan. I guess she gets it.

I don’t have time for this stuff. Truthfully, I don’t even have the emotional energy to spare for it. But it’s non-negotiable.

My girls need me.

I call Luau from the car.

I’m OK. I got the pass for six more months.

I hate this.

Susan G Komen For the Cure

Avon Walk For Breast Cancer

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58 thoughts on “the pass

  1. Oh DOAM, not 1 of us hasn’t had the same thought, “how their lives would work right now without me”, cause we are the mama’s that fight, advocate, fix, understand, educate and get it like no on else. I am thrilled that you passed the exam, and even more that the opportunity exists for you to receive the best possible treatment options available in the country. You are not ever alone in this process, feel the love and warmth of this blog, cause it is all here, for YOU! xoxox punkin!

  2. yet another thing we have in common. My mom is a breast cancer survivor and I had to wait 3 long years after her surgery to get my mammogram (nursing, pregnant, then nursing again). Clean bill here too. My dad, however, was not a cancer survivor (pancreatic) and with every checkup I think they’ll say that something might happen to me. Or my husband.
    So glad you got that clean bill of health, and I’m glad they’re giving you one more way to have a sigh of relief. With you every step of the way.

  3. Thank you so much, Jess, for once again bringing all of us into your personal, intimate space… and for bringing it in such terms of raw, emotional fire. I don’t think all of us are brave enough to say out loud that we feel the weight of the world on our shoulders every second of every day because we know – KNOW – deep, down inside that we are IT. That our kids MUST have us around forever, because OMG, who else can DO THIS? Who else WOULD do this?

    I just had this burst of emotional sobbing and rage and terror with my Hub the other night… it didn’t hit him what I’d been carrying around for the last few years until screaming through buckets of tears I shouted, “… this isn’t whether our son goes to Harvard or a community college… this is whether or not our daughter ever uses a TOILET… or MAKES A FRIEND!…”

    The weight of the world… Jess, you carry it for so many, not just your gorgeous, brilliant, precious girls… and we are grateful for you, and we get it.

    We all love you!

    • So true. I have screamed and sobbed something similar… I pray your daughter does both of those and even more.

  4. I understand. My mother died from breast metathesized to bone..great grandma..breast. I also have a bulls-eye. I also have a son (age 10)on the spectrum…and although there are plenty of times he shouts he hates me he will also come up to me and grab me around the neck and kiss my cheek. He needs me. We all just keep plugging along.
    God Bless you Jess.

  5. Stand proud that you are doing everything you can to help yourself, husband, the girls and everyone that loves and cares for you. Enjoy the day!

  6. I’m on the six month plan, too. I went Monday, but I’m still waiting for my pass. (I should get it today, with my follow up) I’ve tried (many times) to explain what you’ve written here.. it’s not ever about me. It’s always about what it would mean to them.

  7. I, too, often think about those kinds of “what ifs.” What if something happens to me. What if my children outlive me, as they rightfully should. What if my daughter or son end up being the primary caretaker of their brother. What if…what if…what it. I hate that you, in a proactive effort, have to stand before the chasm of What Ifs every 6 months. You’re so strong.

  8. I truly am not wanting to be a downer, but I do think it’s important that we have some form of “what-if” planning done. ESPECIALLY when we’re “it”. Watching Elizabeth Edwards’ life unravel in public made me very aware that sometimes… sometimes terrible things happen. Even when they’re not supposed to.

    Taking precautions is very helpful- and finding the time to make sure that precautions are taken is one step. Every six months is a time-taker, but it’s necessary time.

    Sharon des Rocha Rosa addresses this very well in the blog post at http://thinkingautismguide.blogspot.com/2010/08/when-youre-gone-practical-planning-for.html It’s a harsh reality… but a necessary one. And one that, for the sake of our children, we really should think about…

  9. dear friend: i understand. i lost my father to a brain tumor and every headache is an omen, even though they are really not. hiding won’t prevent it, but early detection enables survival. do it for your girls, and for you and luau. xoxox

  10. I’m with you on the long walk every year. My sister is a survivor, my grandmother not.
    And each year I cry as I tell them why I jump at every possible cancer related shadow.
    You are guided by a good team there. In many ways. Love from Down Under (Australia, not some other place that needs to be scanned)

  11. You are the BEST!! My mom died of cancer and all I think about is I am not always going to be here for my kids, so I really need to do everything I can to help my son learn to make his way in the world. So hard. Check your bits ladies-don’t forget!
    XXOO

  12. You have and always will mean the world to me. That’s all there is, that’s it. There is nothing more. You are the best there is….
    My heart pains for you but I admire your strength and courage and I couldn’t be more proud of how you lead your life. You are an exemplar to all. You have always been my little hero….
    Love you,
    Dad

  13. This spoke directly to me. I have numerous autoimmune diseases and a son with Asperger’s and a daughter with Tourette’s. We have NO family. My husband and I are it. My health (or lack of it) stresses me out each and every day.

    When you are “it” for your children the pressure is just ridiculous. God bless your doc for understanding and helping. My doctor just shakes her head and offers up antidepressants. If only an SSRI could fix the daily battle our family faces with ASD and Tourette’s let alone Lupus.

    Hope those twice yearly checks are just clean bills of health to give you peace of mind to go forth each day.

  14. I was diagnosed with breast cancer in May of 2010. Spent the 14 months in treatment. The hardest conversation I had was with my children, one with autism, one without. The hardest question I had to answer was “mom, are you going to die?”. I didn’t and today I am cancer free but I cringe and wonder at every checkup. Prayers that your twice yearly checkups continue to be clear.

  15. Living both scenarios and I shudder to think of my son’s life without me. I’m happy for you, Jess. But, others of us who get dealt this crappy hand fight like hell to beat it because we don’t have another choice. Have a glass of wine and hug your kids close tonight.

  16. Good for you for talking care of yourself. Having recently gone through a cancer scare myself, I have a renewed sense of urgency to care for myself in ways that go far and beyond what I was doing and believe me I was “doin it alright.” Step it up DOAM, as you say, it’s non-negotiable.

  17. Jess, you may not know it, but we somehow are on the same cosmic wavelength. I sometimes think I should look over my shoulder to see if you are nearby.

    Wednesday at my annual pap and exam (‘annual’ being a lose term, since this was my first in about four years) my doc felt a “thickening between 1 and 3 o’clock on the left breast”. My Mom had a ‘dispalsia’ detected in her left breast at age 50, diagnosed at 52, dead at 62.

    I said to my dear best friend, “Of course no Mom wants to die, and every child needs there Mom, but I have no idea who would run this organization, this team, this business that helps our kids”.

    I have 2 on the spectrum, and no Katie-like angel promising to take care of them. I’m as scared as hell. But I also have no time to dwell on it and will just got to my appointment hoping this time the odds play in my in my favor.

    Thank you for writing just the right thing. Again.

    Wishing you good health and a long life…

  18. Im glad you got the 6 months pass. You are doing all you can. There are things that are unfairly not on our control.

    I spent 1 hour f my day laying in the floor trying to breath, to control the stabbing pain in the mouth of my stomach, trying to pull my head up to see where my 2yo with asd was, lost consciousness for minutes and woke up with him all over me, took my cell from my jeans pocket and called a neighbor to come down and take care of him.. I though I said that she says she couldn’t make out what I said and send her husband running downstairs to check on me (she wasn’t home she was drivin and drove back as fast as possible) he found me I. Te floor trying to breath and called 911 went and carry my son to show me he was
    Fine.
    By the time ambulance arrived I was fine. I felt fine, I felt guilty I scared them and didn’t figure out to call 911 by myself …

    I couldn’t control the pain, as weird as it sounds it is the first time I can’t control a type of pain .. I’m good at that. I couldn’t this time .. I just couldn’t. And now I know. No matter I plan to stay alive as long as possible I also have to get people ready just in case, to be able to help my kids … To be there for them. And then to go to the doctor and check what the @;$;/@/ was that pain about

  19. Thanks for sharing Jess. I’m on a similar road. Have you ever had one of the callbacks, that resulted in a false alarm? Those are days without air too. Sarai

  20. Thank you Jess for this post :) As moms we always seem to put everyone else’s needs 1st and often forget about ours. I took a step today towards taking better care of my self today, I went to a real doctor for the first time in like 6 years. You are right we need to do everything in our power to make sure we are here for our children as long as God sees fit.

  21. You inspired me to get my first one too, at 42, I was still making excuses. Thank you, for not only being a voice for all of us, but for this seemingly unrelated yet so terribly relevant sharing of your most personal moments. You make a difference to a lot of people, you must know that.

  22. Before I read your post and the replies, I was planning to put off my mammogram off as long as possible – maybe even a year or so. I’m not high risk thankfully but I’ve got other health issues going on plus my son’s Asperger’s etc. that I just wasn’t planning on taking on the potential of more. Now I will be scheduling it next week because you’re right, I need to do everything I can to be around for as long as possible for my kids. Glad you got your pass! Take care!

  23. This is such a strong post. I’m flooded with emotions and all I can do is send strength and support to you and everyone who has commented. My son makes me promise that I’m going to tell God I’m not going with him. It breaks my heart every time he asks me to say it. I’m going to do everything I can to make sure I stay with him and his brother as long as possible. xo to all.

  24. Booking a long overdue “girl date” with my doctor right now, this is the kick in my pants that I needed. Thank you, you continue to light the way.

  25. Strangely, this was the first thing I read immediately after finding out a close friend’s breast cancer has returned. She has a family too. Praying for all women struggling with cancer, whose families need them alive and well…

  26. Wow! This post hit hard today. My 38 (yes 38!) year old sister is currently in surgery having a double mastectomy. She has two beautiful little girls (one on the spectrum). I go on Monday for my (hopefully only) annual appointment with the oncologist as my mother and paternal grandmother are/were survivors. Every six months, I hope and pray for the pass because I don’t know how my children would make it without me organizing, advocating, supporting, educating etc….best chance is to catch it early. Don’t forget to take care of yourselves parents! Especially when your lives are more stressful raising special children.

  27. Jess, thank you for this push. Reading your story is both heartbreaking and uplifting at the same time. I have two little girls with different special needs (one has PDD-NOS and the other has a rare genetic abnormality), and I often worry about what they will eventually do without me or my husband. This gave me the kick in the butt to start being more active in my health. Thank you for your strength. It helps so many of us realize our own. <3

  28. This post could not have come at a better time. We just got the results from my mother’s lumpectomy yesterday. She has regularly gone for high-risk screening because of our family history. Her mother died with breast cancer as well as her sister (who was diagnosed at 39). This year she found a lump 2 months before her annual check up. It was a grade 3 tumor 2.7 cm. I couldn’t believe how quickly it had developed. In less than a year she had gone from nothing to this.
    The doctor advised that I need to start getting checked regularly because of such a strong family history. I am only 30, but they said you should start 10 years before the youngest family member was diagnosed. I have a nine year old son, and while talking to my doctor I had the same thoughts as you, “how does his life change without me?”. It is so important to take care of ourselves, not just for us, but for the lil-man (or lil-ladies) eagerly waiting for us at home. It is a horrible feeling living from check-up to check-up, but I have seen how quickly cancer can change everything. Remembering the small face of hope and optimism, the one whose world your life revolves around seems like the perfect reason to keep keeping-on.
    Don’t worry too much about the emotional energy, we’ve all got your back! We’re all of this train ride together

  29. So happy for you that things are okay. My son is 21 now, on the spectrum and doing pretty well. I relate to your posts so much, it’s like a history of my life to some extent. We have not been so lucky, my husband was diagnosed with Non Hodgkin’s Lymphoma in 2011, he has been treated twice and had remissions, it’s back again. Starts chemo next week. Somehow, you just keep going, and try to remember that “Everyday may not be good, but there is something good in every day”. Prayers to you for continued good health. Your blog is a gift to so many. <3

  30. I’m so glad that I read this post – a friend liked it on Facebook and I just felt compelled to read. Now, here I sit at work, crying. lol. I, too, go through this same process every year… and I beat myself up when I don’t go immediately on time… and I dread it and hate it and complain the entire time when I do go. It feels like it’s inevitably going to happen, so it’s just a gamble on which year it will. You’re not alone… I hate it just as much, right along with you… but we must keep going… and praying that we get the pass again! Thank you for making all of your readers aware and for sharing such TRUTH.

  31. I was diagnosed 2 years ago. My oldest has adhd and odd. My other two, well we tey to keep life as normal as we can around treatments and stays in the hospital. You are a strong woman! Just keep swimming!

  32. Jess, I just wanted to share this with you. I am a 3-time breast cancer survivor with a 7 y/o son. I totally understand the feeling. After 2 recurrences each mammogram brings the feeling of waiting for the bomb to drop and with it the thought that my son might grow up without me. I was 34 with my first diagnosis. Second one came 18 months later. Third one 5 years after that. During the adoption process of my son I had to ask the on oncologist to write a letter stating something about my health. I said “if you could just say something like I ‘have a normal life expectancy’”. He said, a little sheepishly, “You’ve exceeded your life expectancy. Your treatment has a 6 year survival rate.” My treatment was in 1998, our conversation was in 2006 and our son was born 2007. I’m alive and well and by the grace of God, still kicking. We do what we must. Keep hanging in there!

  33. Jess,
    I read your blog about being at the breast oncology center on Friday and ended up in tears by the end. My mother is a breast cancer survivor and will be 3 years cancer free on June 3. I am 39 and was 6 months overdue for my annual mammogram that I have had since mom’s diagnosis. Well, my friend (can I call you friend?) you may just have saved my life. As soon as I finished reading your blog I called and made my appointment. I had just been putting it off for no reason. I had my mammogram on Monday and got a call Tuesday that there have been changes and they found nodules. I have an ultra sound tomorrow morning. I am terrified, but am hoping for the best outcome to this scenario. Who knows how long I would have waited if I had not read your blog. I do not have an autistic child, but I am a teacher and I have taught and loved autistic students. Your blog touches me in many ways on many occasions. This time it was personal. Thank you for sharing yourself with all of us. Your words mean so much.
    With Love,
    Becky
    Scared Mom of two

    • Oh, Becky, sending love and hugs and strength and prayers. I get the terror. I’ve been there. It’s going to be okay. It is. xo

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