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.