The Current Story

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The kids and I are spending the summer in Colorado. I’ve posted many photos on Instagram.

I’m watching True Blood on my iPad. Nowhere safe to watch it on a TV. During chemo, we got HBO so I had more shows to watch. That’s when I got hooked on both True Blood and Game of Thrones.

Anna is loving My Little Pony and Rainbow Loom.

Warren is loving Minecraft and Netflix
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Mike is stuck in New York working until August. We text and talk every day.

I just finished reading The Book of Life.

I’m knitting the Ecclefechan Mittens from Kate Davies right now.

We are all anticipating Season 8 of Doctor Who!

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Cancer Stories: The Beginning

cancer stories the beginning

Maybe for some people it’s easy to pinpoint the first day of their journey with cancer. The day they found the lump or the day the doctor told them. For me it has never been so cut and dry. For me, I think it was the day I finally admitted there was something wrong.

Thursday, July 19, 2012. Two years ago today. I’d been in pain since Monday. I experienced bouts of nausea and an inability to eat for about a month. I’d been anemic and very lethargic since February. But this was the day I could no longer deny that something was seriously wrong.

I hadn’t had a bowel movement in a week but I wasn’t constipated. I had moments of stabbing pain on and off all week. That day, though, I picked the kids up from camp at noon and couldn’t leave the parking lot for the pain. I spent the remainder of the afternoon on the couch screaming on and off in pain until Mike called on his way home from work.

He could tell right away I wasn’t doing well. He told me to call my doctor and ask the neighbors to watch the kids. I was ready and waiting when he got home. I still thought I was overreacting.

The doctor sent me for a CT scan. Diverticulitis is what he thought. I vomited up that awful drink. They did the scan anyway.

A blockage they called it. I was sent home. Tap water enema and miralax were prescribed.

You never know how much your husband loves you until he is willing to give you an enema. I never want to find out, but I hope I would do the same for him.

That’s it. That’s the beginning of my cancer story. We had no idea how serious this was. We had no idea how much worse this would get. We had no idea how this would change all of us.

I don’t know if I will continue to share the horrific parts of my cancer story. There are so many wonderful parts I want to share instead. So many small miracles and revelations I’ve experienced since it all began. Those are what I want to share. Those are what I want to remember. But this was my beginning.

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Autism Stories: Bedtime Music

Bedtime Music_edited-1 As an infant through toddler, Warren would never sleep in his own bed. Then, when I was pregnant with my daughter, we had to transition Warren to his own bed. He was always a restless sleeper and it was no longer a safe situation.

We quickly discovered that Warren woke several times each night. It took a lot to get him back to sleep. A lot more than I had in me at the time. I’d read somewhere that classical music can help people relax and there are many compilations available for young children.

We purchased the Baby Einstein Lullaby Classics CD and set Warren up in his own room. Without fail, and still eight years later if the music stops playing while he is sleeping, Warren will immediately wake up. He wore out two copies of the CD and two CD players because we kept it on repeat all night, every night.

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When we got an iPod and were on vacation we decided to download the album from iTunes. Eight years later he still falls asleep to it. Except that he chose not to listen to it while sharing a room with his cousin these past two weeks. He made that choice and we respected it.

I have done no research to back this up but I have offered this experience to parents who have the same sleep issues with their child. Many are hesitant. They say they don’t listen to classical music. It’s not really about what people tend to listen to during the day but what their body needs during sleep. And it certainly wouldn’t hurt to try it.

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Cancer Stories: Zofran

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I remember being told how the side effects from chemo for colon cancer were mild. If what I experienced was mild, I can’t even imagine what moderate or severe side effects must be.

They gave me IV Zofran as they began my first treatment and sent me home with a script for more with instructions on when to take it. The thing is when you have no idea what your body is about to experience, these instructions end up being more like suggestions.

At first we were able to get the script filled at the pharmacy but in the future it would come in three month supplies through our insurance company. That first week, though, I had no idea how to handle this.

If you have read previous posts, you may remember I had a colon resection a month before starting chemo, so I was still on the mend from that and returning to eating after not doing so for nearly a month. Well, add chemo to that mix and my desire to eat was gone and my nausea was just increasing.

My first treatment was on Tuesday and the pump was unhooked on Thursday. By Friday morning, I was eating nothing but saltines and drinking water but no amount of Zofran could get things under control. I ended up in the ER the next morning after being violently ill most of the night. I was dehydrated and in sever pain. They sent me home but gave me a script for Phenergan as well. After reading up on the drug I did not want to take it until I spoke with my on oncologist.

After seeing her the next Tuesday for a follow up we discussed what happened. She added Protonics, told me I could take the Phenergan and advised that no matter how little I feel like eating I must eat even if it is bland food. Saltines were not enough.

I must point out that at this time in my life, I could not keep weight on. Though I was very overweight at the rate I was losing it, I would be in serious trouble if I didn’t get under control.

The following week we went into chemo with a plan. I received IV Zofran during treatment and they told me when I could take the next dose at home. I then had to take it every eight hours no matter what until Saturday. They also added in another dose of IV Zofran when the pump was removed on Thursdays. I took the Phenergan but only at night before bed. This seemed to help a good deal. I still felt horrible but things were under control.

When I received my three month supply of Zofran in the mail, I was shocked to discover I had enough to take three a day for every day of the month for three months. Luckily this was way more than I needed.

April 18, 2013 was the day my pump was removed for the last time. I took a few Zofran once in a while as my body adjusted to no longer getting chemo. I still had a lot left.

At a visit to my oncologist’s office last month I asked if they could use my leftover Zofran. They are each individually sealed. They said they would be thrilled. I was very lucky to have such excellent insurance and cancer treatment has still cost us a great deal but some people don’t even get Zofran covered by their insurance they told me.

Last week, I delivered 18 boxes with 10 pills per box to my oncologist’s office. Just about one year after my last treatment. I was nervous to give them away for a while. Remembering that nausea is still terrifying but I’m glad to be able to spare someone that experience if I can.

It is also a comfort not to have those boxes staring back at me from the medicine cabinet reminding me what I went through and may go through again.

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My Boy, the Doctor and the Easter Bunny

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This was my boy yesterday celebrating Impossible Astronaut Day for the second year. He fell in love with Doctor Who and continues to loves it. He carries his Whology book in his backpack to school every day and brings it out to educate his friends when necessary. I don’t think there is a child in his grade that doesn’t know about Doctor Who and some may never have seen an episode but could describe the show in detail!

On Sunday, we did the whole Easter egg hunt at home and gave the kids small baskets. My mothers employers gave the kids baskets but tried to claim they were from the Easter Bunny. Warren asked who they were really from so I told him and added “I don’t know why the Easter Bunny would bring baskets for you to them.”

At this point he has this look on his face that means he wants to say something but he doesn’t know if he should. So I tell him to go ahead and say what he wants. I was pretty sure I knew where this was headed and I was right.

“I don’t really believe in the Easter Bunny any more. I still believe in Santa because I think I heard him when I was in 4th grade”

My response was simply “That’s fine but do you want to believe in Santa because your afraid you’ll get socks and underwear for Christmas if you don’t?” This of course gets a chuckle out of him. So then I add that “believing in Santa is like believing in the Doctor. You can’t prove his existence but you really hope he is real.”

We also talked about how freaky it was to think of an 8ft rabbit hopping through our house but the story pretty much sums up my son. He knows the difference between real and not but he has hope that maybe there is something a little magical, a little extra special in this world.

Warren will be 12 in less than a month. Warren is on the autism spectrum. Warren has proven time and again just how much he is capable of understanding and doing.

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Cancer Stories: FaceTime

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I love technology. I don’t want to imagine living without it. I don’t know how I lived before the internet but modern technology has never been as close to my heart as when I was hospitalized to have a liver resection.

What a blessing it was every day to have my iPad and iPhone just to have something to do for all those hours I lay awake in pain. The IVs made my hands and arms swell which really limited my activities. I was even able to type what I needed to say when it was difficult to talk.

Of all these benefits, the best was FaceTime. Not only could I talk with my kids each night before bed, I got to see them and they got to see me a little more each day.

This screen shot is from January 8, 2013. The kids had been by for a short visit after school. When Mike left that night at 8pm, Warren was still awake when he got home. Anna had already gone to sleep. She needs her beauty sleep. Mike set Warren up with the iPad and I was ready with my phone when he called. Before cancer, I could count on one hand the number of times I wasn’t there to tuck my kids in. I’ve done my best to make sure I’ve continued to show my kids just how much I love them and how important they are to me.

People constantly talk about how technology has detaches us from each other. Not this time. This time, it brought us closer together. It gave me and my children a chance to be together.

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Cancer Stories: The Tooth Fairy

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Life doesn’t stop just because mommy gets sick. The night I entered the hospital and my battle with cancer began, the magical parts of childhood did not stop. Anna lost another tooth that evening. It was tucked under her pillow as she went to bed. None of us knew what that night would bring. She was excited for the money from the tooth fairy. My fight started a few hours later but the tooth fairy had yet to visit. In fact, she didn’t visit that night.

The next night, the kids stayed with my mother while Mike went to work and I stayed in the hospital. Still no tooth fairy. The child was becoming a bit disappointed. It’s not like the tooth fairy had never missed a night (oops!) but never two nights.

We consoled her saying everyone was awake in the middle of the night Friday and you were at Grammy’s house Saturday. On Sunday, Mike and the kids were picking his mother up at Newark Airport at midnight and making the 2 hour drive home from there so the tooth fairy still didn’t show up! Finally, Monday night the tooth fairy arrived and apparently, was much more generous than usual! My mother or our neighbor, who stayed with them the first night, would have happily taken care of it but it was overlooked unfortunately by all but Anna.

These are the times when it’s hard to keep up the magic of childhood we create but they are also the times when they and we, need it the most. Anna needed that magic. I needed that smile as Anna proudly told me that the tooth fairy finally showed up. I needed that toothless grin that only childhood magic can put there.

This is one of many tiny memories I want to hold on to and share that are part of my cancer story.

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