How Cancer Still &%@$# With Me

Twice since my daughter died have I been convinced that Mary Tyler Son had a brain tumor. 

The first time was last April when four days in a row he woke up complaining of a headache.  Headaches, but specifically morning headaches, are one of the primary symptoms of pediatric brain tumors.  I didn't know that before I moved to Cancerville, but now it is seared in my brain.  His two year old self also seemed not to be 100%.  His appetite was down a little.  He was a little more needy.  Yes, those are both symptoms that something could be seriously wrong as well.  It doesn't matter that they are also symptoms of a cold or a virus or a simple change in mood. 

My thoughts raced.  I went from 0-60 in seconds, anticipating his diagnosis, treatment, and certain death.  I spoke about it with Mary Tyler Dad incessantly during that week.  A pit presented itself in my stomach that grew larger by the hour.  I dreaded picking Mary Tyler Son up from the babysitter, wondering what she would reveal about the symptoms he surely demonstrated.  Every day, it was the same, "Nah, he's good.  He ate well and played well and all seems fine."  That didn't matter.  All I felt and all I saw confirmed the worst.  It was happening again.

On the morning of the fourth day, I called my sister at 7:00 a.m.  She was sleeping.  Bah!  How can she sleep at a time like this?!  Then I called my Dad.  He gave me sane and good advice.  Call Dr. Stew.  He was right.  We contemplated calling our pediatrician, but when you're worried about your only surviving child having a brain tumor and one of the leading pediatric neurooncologists in the world is in your cell phone, you call him.

I did.  Dr. Stew returned my call by lunch time.  He was just as I had remembered him.  Calm, compassinate, caring.  He listened to my concerns and asked me questions.  At the end of that exchange he told me that he was more concerned by the tone of my voice than anything I had said.  He offered to see Mary Tyler Son that day.  He offered to schedule an MRI before the weekend, if that was what was needed.  And then he spoke some wisdom that I think about every day, "You can't ever erase what you know," he told me.  I felt better instantly.  Just confirming that Stew was there and available seemed to be enough to soothe my panicked and traumatized soul.

Strangely, Mary Tyler Son never complained of another headache.  I got over it and life returned to normal.

Until, that is, last week.  On Wednesday morning, as he was leaving for his sitter, we noticed a distinct limp in Mary Tyler Son's gait.  He told us that his foot hurt from the "perfect rock."  The perfect rock is a largish granite rock in a neighbor's yard that we walk past daily en route to his sitter.  Mary Tyler Son likes to crawl on it, stand, and launch his little three year old self off of.  He is proud of himself.  I encourage it regularly, standing there and applauding his every leap.  Sure enough, his sitter confirmed that, yes, Mary Tyler Son and his little friend had been jumping off of it repeatedly on Tuesday afternoon.  Because our neighbors had picked him up and sat with him until bedtime so we could be at a St. Jude's fundraiser (oh, the irony), we hadn't noticed it until Wednesday.

But, you see, none of that mattered because in my head Mary Tyler Son had a brain tumor.  A modified gait or loss of a physical milestone is another one of the primary symptoms of a pediatric brain tumor.  What we were seeing was surely that.  His foot looked fine.  I could flex it every way under the sun and there was no pain.  This had to be, of course, a brain tumor.  Mary Tyler Dad thought I was crazy and overreacting.  There was more discussion about seeing the pediatrician.  We set a deadline for Monday.  If on Monday there was still a funny gait, we would deal with it then.  I tried to breathe.  In and out.  In and out.  In and out.  The dread was highest again at pick-up time.  What would the sitter say?  Would she, too, see what I saw -- the initial formations of the disease that would take both my son and daughter?

Adding to my anxiety/fear/terror was Mary Tyler Son's words.  He starting asking, in a whiny tone and with his arms extended, "Mama, carry me."  Those three words plague me.  They clang around my head like the clapper inside a bell.  Loudly.  LOUDLY, LOUDLY, LOUDLY.  Those words fill me with dread as they are the exact three words Donna spoke before she herself was diagnosed with her brain tumor.  I thought she was being lazy, or wanting to be coddled.  Most of the time I would carry her in those couple of weeks, but some of the time I required her to walk, even when she wailed or cried.  That particular memory haunts me. 

In the end, Mary Tyler Son is fine.  No worries.  I have relaxed, as of Mother's Day, as his limp has disappeared.  And with the limp disappearing, so too have the commands to carry him.  I am breathing again.  In and out.  In and out.  In and out. 

PTSD is how cancer still fucks with me.  As Dr. Stew says, I can never erase what I know.  And I know too damn much.

Filed under: Pediatric Cancer

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  • Breaks my heart, MTM - I am so sorry for what cannot be undone.

  • In reply to jiyer:

    Thank you, jiyer. Thank you. MTM.

  • My sweet Sheila, I can only imagine what it is like for you. It takes a huge amount of self control to not let yourself go there - every small ache or pain I have is a relapse of my cancer - every sore feeling I get in my breasts is another tumor. When my girls don't feel well they automatically have a serious illness. I can't shake it.

    I believe that MTS was given to you as a gift. He isn't going anywhere, he is your little savior. That little angel is going to be a world class paleontologist who will be around to make you proud of every move he makes. I want to believe that and so it must be so!! XOXOXO

  • In reply to Teppi Jacobsen:

    Mary Tyler Son is most definitely our blessing, our salve, our joy.

    And I love the idea of him growing up into a paleontologist, though he still wants to be a doctor when we grows up. Or a chair.

    I heart you, Mama. MTM.

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    Every day, I think about you thinking about this. When either of my twins has a little something different going on, I think about how this would scare the shit out of you. And then I think of that part in "The World According to Garp" when the protagonist/father chooses their house after an airplane crashes into it because it is "pre-disastered." The logic being that the odds of anything catastrophic happening to that house are now astronomical. I also believe that my magical thinking several states away from you creates an even stronger barrier of improbability that the evil fucking bastard cancer could fuck with your family again. I also believe that the bizarre coincidence of your mother, Donna's brain tumor and your daughter, Donna's brain tumor have wiped your slate so immaculately clean that the evil fucking bastard cancer simply cannot take anymore from you and yours. I do believe it.

  • In reply to mary w:

    Okay, Mary W, you need to stop this. You should not be thinking about me thinking about this every day when I clearly state that it has happened TWICE since Donna died. Not even close to every day.

    My new theory about you is that you are a genius. Did you know that extra bright individuals have a greater sense of empathy? Yes, I think that is what it is. You feel things more deeply and empathize more easily because you are a genius.

    But I secretly hope you are right that we are finished with cancer. It doesn't work that way, but I can still dream.

    All my love. Lady. MTM.

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    In reply to Mary Tyler Mom:

    I AM a genius.
    And you are my idol.
    What does that say about you?

    And, just to be unclear, I don't think that you think about this everyday. I think about you thinking about it everyday. Maybe it's because my twins are so full of developmental delays and behaviors uncannily similar to brain disorders. But did you think of that? No? Well, we can't all be ultra-empathetic geniuses.

    And while there may be no rhyme or reason to the madness of cancer, statistics and probabilities exist because they work, and you are statistically very likely to be finished with cancer. So there.

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    Oy. This hits close to home. I would love to believe that having been struck once by cancer, our family would be immune from here on out... but because we know too much, our worries are magnified. Sigh. From a breast cancer scare (biopsy site still hurts, four months later, is that normal?) to lumpy dogs, to my oldest (age 20) stressing out about a cyst... seems sometimes like the worries and fears and mind-always-heading-towards-the-worst-possible-inevitable-conclusion will plague us long after the cancer battle ends. Lemme tell you, it's a crappy way to live a life. At least one dog's lump disappeared, thanks to Chinese herbs, specifically Xue Fu Zhu Yu Tang. Who would've thought? Chinese herbs=hope. T-cells=hope. Still choosing hope, roomie. In spite of everything.

  • In reply to Liz Anderluh:

    Oh, I am too, Liz. I will always and forever choose hope, because the alternative is not a life I ever wish to live.

    This time around, as opposed to last year, I refrained from calling Dr. Stew. I self-talked, and whenever the panic would reach a crescendo, I would detail why it was probably not a brain tumor in my thoughts. His appetite is good, his mood is good, he was jumping off the rock time after time after time, there are no headaches, etc. Sigh.

    All my love. MTM.

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    every time i feel an odd flutter on my stomach or have some kind of strange uterine pain, i tell myself that i probably have cancer. when my daughter was born 7 years ago i had a colposcopy done on my cervix and it came back with abnormal results. HPV in its worst form can cause cervical cancer and I have a pretty bad/abnormal form of it... i have put of any tests and such that i could do to figure out what is actually going on inside my body... i almost refuse to know. still on the fence as to if i would want to know.

    my dearest cousin was diagnosed with a Glioblastoma multiforme 5 years ago and still fights her balls off to this day. my grandmother died of pancreatic cancer, my boyfriend's mother diagnosed with breast and lymph node cancer... i cant deal. too much cancer around me so i just choose not to know if i have any. is that wrong?

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    In reply to CortneyDizzle:

    Yes, it is wrong. Please, please, please don't do that to yourself or those who love you. My mother subscribed to the same thought process: she knew for years that something was "not right" with her, but if you don't go to the doctor, he/she can't tell you there's something wrong. Turns out my mom had advanced cervical cancer that metastasized to her kidney and colon. She died a few months before my 26th birthday. She didn't get to be there for my wedding, or to see me become a mommy myself. My daughter doesn't have a grandmother, and I lost my biggest supporter. I'll also add that cervical cancer is preventable if it's detected early. My mom hadn't gone to a gyno appt. in over 10 years.If she'd taken that simple step of a yearly exam, she could very well have still been here with us. I can't begin to tell you the kind of anger I had to work through, knowing that she might have prevented her own death by simply going to the freaking doctor for a Pap once a year. Please, please, please... If you don't want to know for you, do it for the people you'd be leaving behind if you had something and did nothing. Best of luck to you.

  • In reply to CortneyDizzle:

    I just wanted to let you know, that I too have had that same exact scare, when I was pregnant with my first born. It scared me too, really bad. When I got knocked up again, I immediately told my new doctor, and they ran tests, it dissapeared! Apparently it can go away by itself, don't get me wrong there is still the risk that it can come back, but just regular pap smears can detect it, I was told to get checked once a year. Hope this helps your worries, btw my son and daughter are 4 yrs apart.

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    How cancer still f#$*& with me: Even though it's been seventeen years since my father died of cancer, I still lose my breath sometimes when I think how he would've loved my son. I still feel robbed, for myself, for my mother and my siblings, for our children. Even though it's been seventeen years, I still get that lump in my throat that I just can't swallow through. I still sometimes remember him at his worst, but am so grateful he made so many good memories with us when he could. Cancer is a wicked thief with no regard for age or circumstance. But each time we survivors choose life, choose to mourn and work through our anger and not let it eat us alive, choose to smile and remember why we miss our loved ones so much, I believe we give each other hope. You give me hope, MTM.

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    Cancer screws with me on a daily basis. If it isn't me questioning Owen 100 times a day about how he is feeling, it's checking in on all our friends going through treatment knowing it could just as easily be us there back in the hospital, if it's not that it's the little jerks called kids that pick on and tease Owen for the things that cancer took from him. I know he's fine (not today he will be staying home from school with a fever) but cancer wise, he's fine, for now, hopefully forever, but it will always be lingering in my mind. Your shy guy is an amazing kid and he is going to give you more scares daily, he's a boy they are like that. Hope to see you guys soon.

  • Sometimes I have to wait to read your blog until I know I have some time to plan for a cry. I just hate that you are going through this.

    I don't know if your fear will ever go away. We learn from our experience, sometimes unfortunately. A much more minor example from my own life was trusting a pregnancy after two miscarriages.

    MTS is a strong, healthy, happy boy who likes to jump off rocks! That's all, no boogie man here. Maybe your own mantra of "choose hope" is the best advice here.

  • Sheila. I have never been directly affected by cancer, thank goodness, but for some reason(probably some kind of mental illness) my brain ALWAYS goes there, too.
    If I get a cold, I am convinced it's cancer. If Lucas has a headache, I swear it's cancer.
    I started this train of thought sometime in my teenage years when I got stomach aches a lot. The doctors never took me very seriously and I have never been diagnosed with anything, and to this day I have digestive issues, but back then when I was in high school, I convinced myself that I had stomach cancer and that I'd never see graduation.

    I also developed a teeny-tiny little bump behind my ear at some point, and I was sure that was cancer, too. I had a dr check it out and upon feeling it, he said it was probably a cyst. It's never gotten bigger and is still there many years later, I'm sure he was right.
    BUT what if he hadn't been? Then there's a good chance that I might not be here today writing this.

    THAT is what scares me most about cancer. Most people assume that whatever is wrong with them is something minor. Normal people don't go into worst case scenario mode every time they get a headache, but I do.
    Those "normal" people often ignore symptoms for a long time and regret it later.
    Do you wanna know something stupid though?? As paranoid as I am about getting cancer, and as worked-up as I let myself get over small things, I still rarely go to the dr. I am even more afraid to find out what's wrong. Even though I know what can happen when something goes undiagnosed for too long. I still just sit and stew in my irrational fears. Usually.
    Sometimes I have to give in and get things checked out for my peace of mind. My fear of cancer can completely consume me to the point of not sleeping at night, and that's not healthy either.

    So, I say all of this knowing that right this minute, I am again, being consumed by my irrational fears and paranoia.
    I have been feeling sick for a couple weeks now with a cough and sore neck/throat. No fever, no other signs of illness. Just a yucky cough and some swollen glands.
    There's a new lump though. One that has never popped up before, so it has my brain working on overdrive. I'm going to call my dr today and make an appt. for Monday hopefully.

    Sorry for the ramble. I know that my not having been directly affected by cancer doesn't even compare to what you have had to endure, but I wanted to tell you that I can relate in a way.
    It's a terrible way to live.

    Love and light to you, friend.

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    MTM,
    I remember posing the question to my son's oncologist , "when will we feel like he's really cured, the cancer isn't coming back?" He softly responded (which wasn't his usual, bubbly, loud laughed behavior) "the ghosts of cancer will never go away". I was so thankful for his honesty. The ghosts are there, they get louder and darker closer to follow up appointments, then when any scare subsides (and there are many) they quietly fade into the background. But I do still see them.

  • Cancer always f's with me... I hate it more than anything! I always think its going to do something. There was a point in my life that there were 3 people that I love all fighting at one time. My boyfriend, now husband (Hodgekins Lymphoma Stage 3), my Mom (Breast Cancer Stage 1) and my Step-father (End Stage). It was horrible! My mom and my husband beat the beast, but not a day goes by that I don't think its going to return in them, or come after me or my son. It has attacked and killed others in my family as well, its just a nasty mother F*****er! Your right MTM... Cancerville Sucks. I hate being there, but oh the support you get there is amazing!

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    It has happened to me too! My fam has a history of cervical cancer. My grandma died from it, my mom had it. So I always felt like a ticking time bomb. One of this days my cervix will go to Defcon 4 and that will be that. Well I was having very weird lady problems (sparing the gory details) and I called my doc to make an appointment. I had been married for about 6 years. We did not have any children or any plans to have any children. If it happened awesomesauce if not we could adopt a couple. Not worried at all. Well when this weirdness started, I immediately thought "Oh man here we go. This is the big C. " And a whole lot of cuss words too. So I go to my GP he says he wants to do a pregnancy test. I looked him square in his medically trained practicing longer than I have been alive face and said "Why are you messing around with a stupid pregnancy test when I have cancer?" We had discussed my background and he knew my fears. He said to me, "Because I paid all the money for the plaques on the walls and I get to choose first!" I smiled at this and still said "Ok but we are wasting valuable time on this when I need to have a biopsy." Well that was twelve years ago and I was pregnant with my son. Cancer is a sneaky B*&tch.

  • When you have been through what you have, it is completely normal to have the fear that the same thing will affect your other children. Even with a chronic illness, when you have one child with one, you are ever vigilant with your other kids. Every limp, every cough, every bruise, becomes another possible symptom of whatever it may be that your other child had/has. I love what Dr Stew said to you "You can't ever erase what you know". It is so true. Yet with that knowledge also comes power - power that you are aware of the potential enemy. Get it checked out, stay on top of it, whatever you need to do to get peace of mind. Do your best just as you did with Donna. Nothing will stop you from watching MTS and worrying. Believe me, my children are in their 20's, and I am always watching for that limp, asking about that morning pain, looking for that swelling, listening for that wheeze, all those things that have affected my son for so long now, I worry about affecting my daughters too. Still. You will watch and you will worry and yet he will continue on to jump from that rock (or something higher) because you know that letting him be a child is what he needs to do. So, continue to be the strong mom and woman you are. You are an inspiration. As for MTS, will learn to put up with the "how are you?" questions, just as mine has, because you allow him to go out and challenge the world. You will not let him stop because of the "what if's?" in life; you certainly haven't.

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