The Day My World Changed

It feel like I’ve been writing this post in my head forever. Since the 1st anniversary of my cancer diagnosis, when it all came back to haunt me but I had nowhere to put it. It’s also been in my drafts folder and I accidentally posted it last month – completely unfinished. Sorry about that! It’s going to be long so I won’t hold it against you if you check out or skim.

I’m technically posting it a day early because I rarely pay attention to my blog on weekends. This weekend especially, will be spent focusing on my family and appreciating that I’m here to do it.

This weekend is the 5th anniversary of when my world fell apart. It was actually a several day process but on February 19, 2006, I heard the word cancer for the first time. I wouldn’t hear the words gastrointestinal stromal tumor for a couple of days but this is the day the “c-word” took on a new meaning for me.

It was combined with the word metastatic, which oddly enough made me think of Sculley on X-Files. That was a word used to describe her cancer and I knew it was bad news. I’m such a dork! In my defense I was also on some amazing drugs.

Later in the ICU, through my fog, I heard the surgeon tell my husband things like “we took out all we could” and “you’re lucky you brought her in when you did. She wouldn’t have made it to morning”.

That last statement haunts me the most because my girls were at the age where they got in bed with me each morning. I can’t let my mind go there.

I should back up though and tell you the rest of the story. The part where I didn’t see it coming. Where I took the diagnosis I wanted to hear – a harmless fibroid – instead of getting those nagging questions answered.

It started May 2005 with a pain in my side. Just a twinge that drew my attention to what they referred to as a palpable mass. To me it was weird lump that seemed to be getting bigger. One I could feel when I would lie on my back. I had it checked and was told it was a fibroid. I was put off and told to call if it felt like it twisted.

My mom had a history of fibroids and endometrioma. I took that and ran with it. Easy peasy, harmless fibroid. Nothing serious. Cool.

Nine months later I thought I had the flu and an early period with cramps. It started on a Wednesday, I blew off the girls’ swim lessons and put a heating pad on my stomach. During the night I was up sick and really weak. Science Guy wasn’t feeling well either so of course it wasn’t anything serious. Nothing unique to me.

On Thursday morning I remember a stomach pain like nothing I’d ever had before. Not even labor had knocked me on my ass in the same way this did.

I considered the twisted fibroid theory. I sat on the floor in the hallway outside the bathroom trying to catch my breath and waiting for the pain to pass because I couldn’t move any farther.

D1 stepped over me on her way outside to the bus and said “Mom, you should go to the doctor”. The pain stopped, as I’m told it would have after a rupture, so I didn’t listen.

I should have listened. She still reminds me of that occasionally.

My “flu” continued through Friday and into Saturday. There was no way to get the bath hot enough to stop my chills but I kept trying.

By Saturday afternoon I hadn’t been out of bed but I was sure I was getting better. Moms don’t get sick. Especially a 37 yr old mom with 3 young girls.

I’d been online (of course) and had decided SG and I both had strep. I read that stomach pain and nausea could come with untreated strep.

 By evening I finally agreed we should both get checked. We dropped the girls off at the neighbor’s house and headed to the “Urgent Care” at the mall. Yes, the mall. Isn’t that where everyone goes when they’re dying? Who doesn’t want their last meal to be a soft pretzel?

It was the height of flu season and as we waited there forever I felt weaker and weaker. I remember telling SG that if we had to wait any longer, I was going to stretch out on the floor. That should have been a clue. I don’t do dirty mall floors!

After what felt like hours, we were finally called back and yes, we both had strep. The nurse who had done the swabs came back and re-checked my blood pressure – then quickly left the room. The dr. came in and asked us which hospital we wanted to go to. He would call ahead and let the ER know we were on our way. We picked the closest one, only blocks away, but still didn’t know exactly why he was sending us. He didn’t tell me my blood pressure reading.

I knew I was weak but I’d taken a long shower, washed my hair, put on makeup and walked the length of the mall to the clinic. I was ok. Probably just dehydrated.

On the way to the ER I remember things getting bright and I could only see the outline of the buildings and trees. I guess I knew that might not be good but I still walked through the hospital parking lot, hanging on to SG, and into the triage area. We told them they should be expecting us so they got me in right away. They asked a few more questions then again, took my blood pressure.

50/30.

They wheeled me right back. It funny how fast they can move when they want to. It felt so good to stretch out on the gurney. Not exactly memory foam but I thought it was heaven.

The rest of the evening was a blur. Snippets of images in my mind. Pieces of conversation.

A comment out in the hallway about my white counting being over 250,000 – followed by whispering and a palpable sense of urgency.

Someone asking if my abdomen was usually extended. (Well that was kind of rude. Were they calling me fat?)

A painful CT as I struggled to follow the breathing instructions.

I remember being told they had called a surgeon and that he arrived very quickly.

I remember him talking about possible renal failure and surgery post-haste.

Something about calling in his team and that they weren’t sure what they’d find until they got in there. Where’s Dr. House when you need him?

Science Guy looked like hell and worried me. He was pale and sick but never left my side except to call the neighbor and get overnight bags up to the girls. My mom called as he was leaving to take care of things. He filled her in on the bare minimum. She started getting things in order for the drive over.

By midnight I was in surgery.

I was in there for something like 4 hours. I’ve never quite known for sure. It’s a one of those small details that got lost in the aftermath.

I do know SG was in the waiting room. Alone and sick in the middle of night.

He was watching the Olympics between naps. One of his students’ family was also in the waiting room awaiting the birth of their 1st baby. What he must have been going through brings me to tears even 5 yrs later.  So much happiness on one side of the room and him sitting alone until the surgeons brought him the news of my cancer on the other.

The primary tumor had ruptured my small bowel. They’d repaired what they could and removed what they could but there was so much more than they could take out. I was in the ICU.

My mom talks about the drive over. She only remembers pieces. They were on auto pilot as any parent would be. As I would be if it were one of my girls. SG hadn’t said the word cancer but they knew.

My dad can’t talk about it. My grandfather (his father) had checked into the hospital with cancer years ago and never made it back home. He’d also gotten the “we’ve taken out all we can” speech.

The next 10 days are mostly a blur to me. I remember a lot of pain.

I remember the girls coming to see me and the looks on their faces when they saw the number of tubes going into my body.

I remember the devastation on my mom and dad’s faces. Quickly replaced by looks of love and reassurance. And pain.

I remember D1 with her little mask on because she had bronchitis and it was the only way they’d let her in to see me. I put a mask on instead so she could take hers off. I was already scary, I couldn’t look much worse. I remember the look on her face when she heard the word cancer. She’d lost a classmate to brain cancer the month before.

I remember D2 wanting to be in bed with me but since she couldn’t lean on my stomach, she wrapped her arm around my legs and put her warm little head on my thigh. That’s where she stayed every day after kindergarten.

I  remember  4 yr old D3 being excited I had SpongeBob on the television in my room and that I knew where the chocolate milk was kept by the nurses station. Everyday she came and I envied her innocence and trust that I’d be ok.

I remember how much sunshine and joy they brought into a dreary, but flower filled, hospital room.

I remember studying their pictures on my window sill and wondering how much longer I’d get to be with them.

I remember my lungs being drained and my stitches being cut to check for infection because my fever kept spiking.

I clearly remember a rookie nurse asking me how I felt about “having cancer with young children at home”. I remember thinking she was the biggest bitch I’d ever met! Still do.

I remember my oncologist coming in, introducing himself and immediately saying there was a new pill for GIST. It didn’t used to be treatable but the new therapy showed promise. I remember relief.

I remember a conversation with the surgeon where he commented on my puzzling attitude in the ER. He said that no matter what he said to me, how bad he made the surgery sound, how much he tried to prepare me for the worst, my response every time was simply, “Ok”.

In my mind there was no other response but “ok, do what you have to do”. I had failed miserably in my attempt to diagnose myself. I knew it was more than I could fix with rest and fluids. His job was to “fix me and get me home to my girls”. I was not going to leave them! I hadn’t said goodbye or told them how much I love them one last time. They still needed me. SG still needed me. Whatever he had to do to get me back to them was OK!

And I remember coming home. There are no words.

The last 5 years have been snippets of clarity mixed with the same old day-to-day that everyone faces.  I’m sorry to say I haven’t been one of those people who sees cancer as a gift that brings new perspective.

I will never write a book about crazy sexy cancer because to me it’s more along the lines of obnoxious fucking cancer.

But I’m still here.

D1 was in 3rd grade then – now she’s months away from starting high school.

D2 was in kindergarten – now she’s on her way to middle school.

D3 was home with me – now she’s on the downhill side of elementary school.

I’m here for holiday programs and birthdays. I’m here to play games and to help them with homework.

I’m here at the end of the day to crawl into bed with SG and just appreciate so much what we almost lost.

I often wake in the middle of the night to find that he’s holding my hand in his sleep. I think it’s his attempt to keep me here with him through the night when I came so close to leaving him before.

I’m where I belong and no matter what it takes to stay, no matter how many surgeries or drug changes, I still say OK.

106 thoughts on “The Day My World Changed

  1. Well I didn’t expect to be crying before 6am, but Marinka sent me over here for your anniversary, and I’m so glad she did. I love your candor and honesty and humor. THANK GOD you’re still here! Hope you have a wonderful, healthy, relaxing weekend with your husband and girls! ps – hi, I’m Christy!

  2. I’m struggling to write a comment that will convey the admiration that I have for you and for your family. You’d been through something that no one should have to go through, certainly not a mother with three daughters. I am in awe of your courage and honesty and I’m honored to call you a friend. Lots of love to you and your family. xo

  3. “Congratulations!” seems pretty fucking trite after a your incredibly moving post.

    I think “Ok” is a great response–honest, true, straightforward. Like your writing.

    Here is to many many many more anniversaries.

  4. Here’s to more posts celebrating the journey of life.

    You bring such a perspective that is a good slap in the face for everyone.

    Life can change in the snap of a finger.

    I am so happy that we are celebrating with you today.

    This is wonderuful, wonderful.

  5. “Skim or skip ahead?” Are you kidding? I hung onto every word of your post, realized I hadn’t taken a breath till I reached the end. Marinka sent me here, I’m so glad she did. Your story frightened and moved me. It was a bravely, beautifully told wake up call for all of us. Thank you so much for sharing it.

  6. What a post, man. What a post.

    I appreciate your need to mark this moment and honor it in the telling. We are here with you today for that. Cosmic hat tip to you..

    I appreciate you bringing attention to those nagging suspicians, the way we all ignore our guts sometimes, especially women.

    I appreciate the way you described your daughters in their reactions. I have two girls and you made me ache. I could feel that warm Kindergartener’s head. I can imagine that stab of unfathomable pain when you can’t help but picture if you hadn’t woken up in the bed that day.

    I appreciate what you said about House. Any time I’ve ever been sick at the doctor and they’ve taken a guess at what’s wrong I’ve thought, “Aren’t you even going to search my apartment??”

    I appreciate you for telling your story. I’m so sorry for all you went through. I’m so glad you are still here, surrounded by what sounds like a beautiful family.

    Take care.

  7. They say the day you are diagnosed is the day you become a survivor. *That* is an anniversary worth celebrating, so congratulations. I think of you and your family often.

  8. I forgot to say that I’ve read this post many many times but every time I read about SG holding your hand in his sleep I tear up. What a love story you two are. If I didn’t love you so much, I’d be totally nauseated.

  9. Pingback: Tweets that mention The Day My World Changed « Lost in the Chaos -- Topsy.com

  10. I don’t know you but am giddy at the 5 year anniversary. I am going though this process with a friend diagnosed 11 years ago.

    This is the most glorious news!

    • Thank you! Yay for 11 years – So happy for your friend!

      Wow – I wonder what kind of therapies they’ll have for my type of cancer in 6 more years. Maybe it’ll be that one that finally makes me cancer free?

  11. I completely understand the “okay” response – I would react the same way. For the same reasons. This was incredibly moving – and terrifying. There really aren’t any words to do justice to the experience of reading it. Thank you so much for sharing your story.

  12. Marinka sent me over here. Your story is heartbreaking, but your courage is really inspiring. Thank you for reminding me to be more grateful for what I have. I am sending warm thoughts for many many more anniversaries for you.

  13. I didn’t cry before 6 but I sure did by 9:36. What a riveting (if terrifying) story, amazingly told. Am in awe of your insight and your strength. So happy Marinka sent me here.

    Huge congrats on an anniversary worth celebrating as big as you can. This weekend and every other.

  14. Wow. Just wow. Marinka was all “Read this” and I was like “Whatever, MOM” and then I did and I’m floored. I had to read this three times, the third time reading much of it aloud to my husband, who was just as riveted.

    I’m so glad you’re still here with us. So very glad.

    • Oh I know – she’s kind of bossy that way isn’t she? Good thing she’s so lovable too!

      Thank you for reading and commenting! Really – you read it 3 times? Even I lost interest after 2. ;-)

  15. So many parts of this story made me both shudder and grin. You showed both the fragility and the mettle of the human body and spirit. Like Marinka, I completely lost it at the part you talk about your husband holding you hand in his sleep.

    Wow. Just wow.

  16. I’m so glad you’re not all Crazy Sexy Cancer! I feel like I’d be the same way and I’m guessing you have a lot of company. I have three girls and one of them is in Kindergarten so putting myself in your place is not a far stretch. Thank you for sharing this with us. The writing -it was really really beautiful.

    • Thank you! I’ve tried to be all “yay, cancer will make me a better person” but it didn’t happen.

      Hug those little girls – I’m sure they love their momma!

  17. Thank you so much for sharing this powerful story. Brings me to tears and to my knees in appreciation for health, love and happiness – the trio that we never see but feel most when we lose them.

  18. Usually Marinka’s emails to me are offensively rude and laddened with erection stimulating mail order nonsense(possible exaggeration). However, today I’m so happy to know someone like her, to turn me onto someone like you. Five years. Unbelievable. I love the poignant voice you take and the way you tell this story where i want to jump up and down and just say horray! Mostly, because im bad with words and youre right, that nurse does sound like a bitch.

    • Oh good lord, she sends those to you too? What is it with her and erections?

      Thanks for following her advice today and thank you for the nice comments.

      Re. bitch nurse – we saw here on the school playground about a month after surgery. My 3rd grader said, “punch her mom!”

      Another time I should have taken her advice.

  19. Well, now you’ve got the west coast crying in their coffee. 8:32 a.m. This post is stunning, but I have no doubt that that is because you are stunning. So glad you are here to write it, but even more glad you’re here for your girls and your husband.

    • Thank you for the kind words! I’m on mountain time and all of you are making me cry if that helps. I’m glad I’m here to write it too. I keep coming your direction for surgeries. Not that I’m a stalker or anything, I’ve just seen your tweets about Spokane.

  20. What an awesome post – what can I say that hasn’t been articulated by so many other people who recognize your bravery and the uniqueness of your story. You have a very lucky family and I wish you all joy over the next year.

  21. I remember when I was in school my mom went in for what they thought was a hernia but when they started the surgery they realized it was actually a large tumor that had pushed through her intestinal wall. We were lucky that it was benign but I remember the terror of realizing that mom wasn’t immortal and to this day that experience reminds me to love a little more loudly every day. Today with this post I got another reminder. Thank you for that.

  22. Annie, I don’t know you (and I usually don’t care much for strangers) but I am truly, truly happy for you on your anniversary!

    I loved the honesty and “do whatcha gotta do attitude.” In your honour, I am letting my previously exiled children back into my bed this evening.

    Thank you. And they thank you, too.

    Here’s to many happy anniversaries to come.

    • Yay for returning exiled children! I love that you don’t care much for strangers. Neither do I, that’s why I decided to make people cry today.
      Ok, maybe not – this post was more therapy for me than anything. I appreciate so much all the people who have taken the time to read such a boringly LONG post!

  23. I’m so sorry for all the pain you and your family endured, I’m so happy you are here to write this 5 year anniversary post and I’m thankful that I read it today. I woke up not being as appreciative of life as I should be – this a much needed wake-up call. Many blessing to you and yours.

  24. Even though I’ve heard you tell this story before (and have always been in awe of what you have endured) it was so very moving to read it in print form and cry “with” you. You have so many things of which to be proud! I have been thinking of you all week and will especially tomorrow. And I vote for at least 60 more years!

  25. thanks to wendi aarons who never seems to say one serious thing ever on twitter for sending me over. skim? pfsh. i literally hung on every awesomely written word.
    i always wonder how i would handle the big C. i mean with so many people who put faces to the disease, we all know someone, right? i’d like to think i’d face it heroically, with dignity, with an opportunity to shine like Jesus.
    but then i remember my mouth is working before my brain and i feel bad that i’m an ambassador for Jesus because i’m sure he’d be thinking of revoking my saved status just so i don’t ruin it for him forever.
    i also worry about getting alzheimers and saying pretty much everything on my not-so-there mind. complete with the f-bombs. pretty sure i’m going to be one of those swearing alzheimer people.
    i think… based on this one time of meeting you that you have weathered the storm with dignity and grace. heck… mothering on a good day is tough and look. five years later, here you are. family intact, a strong marriage {sleeping hand-holding… swoon} and thriving kids. nothing short of amazing!

  26. Marinka is a bossy bitch with no regard to how this post would make ME feel, it upsets me to think her life doesn’t revolve around my needs.

    And this post, how dare you suggest anyone skim it? I hung onto every word and even though I just met you I wanted to reach over and give you a big hug, unless you hate that sort thing in which case *virtual vodka shot* for you.

  27. I’m so glad Marinka sent me here. Thank you for sharing this amazing journey. Sometimes, I feel immune, because, you know, moms don’t get sick. But when a friend of mine was recently diagnosed with breast cancer, it shook that belief down to nothing.

    Thanks for letting us celebrate with you. Thanks for saying all the truths we need to hear.

  28. Hi. Another Marinka friend here. I never assume I’m immortal (far too neurotic for that) or that anyone I love is (I’ve been through a lot with my son). I started bawling at the part where the surgeon said you wouldn’t have made it till the morning. Then I smiled at the pretzel line. Then I bawled more.

    In telling your story, you’ve helped raise awareness about cancer detection, and about trusting your instincts, so, bravo.

    I hope you are doing something great this weekend to celebrate life and family, all that really matters. Well, shoes do, too, so I wish you lots of shoes.

    I shall return.

    • Hey I like shoes!
      Maybe somebody out there will read this story and go ahead and second guess a diagnosis – before their insides blow up and try to kill them. Thank you for reading and for the good wishes. And shoes.

  29. I read this post early this morning (was sent over by Marinka) while still in bed with my husband and two babes who also crawl in with us every morning. It felt like a gut punch, one that brought tears immediately to my eyes. I raced on with my day, but your story stuck with me throughout… images of you with your children and husband and caught me off guard more than once. I was so struck by your courage and strength, I’m sure it will stick with me for a very long time. Thank you for sharing with us… You’ve touched and inspired so many people, and I for one, am grateful. You are a force… and should expect many more anniversaries.

    Love to you and your family :)

    • Thank you so much! I wrote it as therapy because I had to get those memories out….hoping to give them less power. I had no idea my words would be so well received. I’m truly honored today.

  30. I have no idea who this bossy Marinka person is. I am so glad that you came to find me, Annie. So glad that you pointed the way to this post. That you pointed the way to your story.

    Thank you for that. I am honored.

    This is an amazing piece of writing. An amazing story. You and your family are so lovely. I am so impressed. So happy that you are here to write like this. So happy your husband reaches for your hand and finds it.

    But the part of this story that made me really cry?

    The image of your young daughter hugging your leg and resting her head against your thigh. Looking for and offering comfort in the only way she knew how. Tears as I type this.

    Annie? I don’t know Marinka.

    So send me more links.

    I like who you are. I want to know more.

    So much love to you.

  31. I’m so glad you’re still here -I’ve only just ‘met’ you and I want many more years to enjoy your company -with luck we will both be around to celebrate many more anniversaries over twitter and the blogosphere.

  32. Marinka sent me and like the others I am glad she did.

    Having nearly died with an ectopic pregnancy I related to your ER/Urgent care stories after all I was fine, it was just a painful miscarriage or so I thought! I remember the morphine giving me a fog of pain relief and understanding how people can be addicted to drugs.

    I am very glad for you and your family that they were able to do what they did, so that you can be there for them.

    I am so happy that your husband holds your hand at night – it is a love story like Marinka said and tears sprung to my eyes on more that one occasion in your telling of your story.

    I am glad that you brought awareness to some of your symptoms and hopefully someone out there will not ignore their symptoms.

    So cheers to your anniversary and I hope that there is so many more that your husband will still be holding your hand in your sleep at 80 something.

    • Thank you! I’m sorry you related to the ER part but am glad you were able to come through as well! I’m glad you followed Marinka’s advice and came over. Thanks for reading and commenting!

  33. I am here because of Marinka as well and feel so privileged to have stopped by.

    I am a mother of 3 myself – all boys and all under the age of 5 – and one of my biggest fears is being diagnosed with a terminal illness. It’s an encouragement to hear how one can go through a situation like that and come out fine on the other side. I love your strength and surrender through it all – how whatever the surgeon had to do was OK because you had to get back to the family that needed you. You’re such a great example of perseverance. If ever I were to go through a situation such as what you went through, I would know who I would think of – you.

    Thanks so much for sharing your story.

    • Thank you Melanie! I think you’ll find that if you ever, God forbid, have to deal with something like this you’ll have more strength than you know. This constant battle has been exhausting and still is every single day but as a mom, that’s what we do right? We deal :-)

  34. Annie-
    Just catching up on my blog reading, and so, I just read this.

    What a moving, and courageous, post to share! You moved me to tears. Thank you for sharing a little bit of you. I hope you found it therapeutic to your soul.

    Your story serves to remind me that every moment we have here, with those we love, is a moment to be treasured. Thank you for the reminder.

    Hugs to you, and heartfelt hope for many, many more anniversaries to come!

    • Thanks Christy! It was therapeutic but i almost feel like there will be a part two. Saturday my mind was going a 100 miles an hour but i had decided to be offline and focused on my family this 3 day weekend. I’m glad I did but there’s still a lot rattling around in there. It’s been a long 5 years! Hugs back to you my friend!

  35. Unbelievably story … so beautifully told … so heartfelt. I’ve been going through this with a girlfriend who was recently diagnosed with breast cancer. Oye, the emotions that I have … I can’t even imagine what it’s like on the other side!

    Happy 5th anniversary. Here’s to many, many more!

    • Thank you Jill – I hope the drugs continue to work and I will have many more too! So good your friend has you to be there for her. That’s the best thing you can do! Just be there and give her a place to be uncensored.

  36. Reading this in bed, I let out a whimper and my husband started to read it over my shoulder. The homo is still crying. You are an amazingly courageous woman & I am so thankful mamabird introduced me to your blog.

  37. I have to say I am “lucky” in that I come from a Jewish family that heartily believes in second and even third opinions and doesn’t tolerate being uncomfortable for very long

    I am so sorry that you had to endure all this and so glad you shared your story. My sister is a doctor and I think she is a good one. (a pediatric gastro, believe it or not) but i have seen over and over again that they are Gods and how important it is to get another opinion.

    Happy Anniversary to you and my you have many, many more.

  38. Pingback: Reader questions and giveaway issues | Blogging Angels

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s