Sharing this journey on Patch

Before I get started, I wanted to share the photo of my oncologist, Dr. Nakajima. Here he is:

He's so very, very kind!

I've decided to share my journey with my Patch readers. Of course, I can't go into the detail that I've shared with you  here in my blog, but hopefully I can get women to get mammograms. The first installment is called, "My Battle with Breast Cancer". I know, not the catchy titles, but my editor, Theresa, is smart. She words titles in a way that will get internet readers to find it. I'll post the second part here when it's out on Sunday. Let's just say that I'm a little more descriptive in how I was feeling. In other words, I share the battle with darkness that one wages when confronted with something like this. Sometimes, the darkness wins.

If you've been reading this for any length of time, you know that I dislike October's designation as breast cancer awareness month. And, yes, I know that sounds odd. But the reason I'm uncomfortable is two fold. First, why does any month have to be designated for one particular cancer? In my journey, I've met people with other cancers, who have no specific month designated for them. I've met colon cancer patients, a friend has pancreatic cancer, and my mother in law beat bladder cancer. While my cancer may be trendy, but still deadly, theirs is every bit as deadly. They just don't get the benefit of it being trendy.

The second reason I don't like this month is that it's the Holy Grail of months for manufacturers of all types of products. Everything turns pink for an entire month. Don't get me wrong - I love the colour pink. Always have (as evidenced by the prominent colour of this blog!). But just because the label on a can of soup is pink, doesn't mean that anything is being donated. 

I was at the grocery store, and as I walked in, there were giant photos of cakes & other pastries with pink ribbons all over them. Words like "hope" & stuff were printed under them. When I looked closer, there was no small print. There was nothing saying that any proceeds of these festively decorated cupcakes went to anything - other than the pocket of the grocer.

Something else I'll bet you didn't know. Even those that donate proceeds to charity have a preset cap; in other words, they decide how much of the proceeds are going to the charity that they've chosen before the campaign gets under way. After that cap is met, the rest of the proceeds is pure profit. And here's why that irritates me - the cap is usually some paltry number, say, $250,000. While that may seem like a lot, during the month of October, the sales of all things pink bring in millions. All purchased by wonderful people, thinking that their hard earned money, and their decision to pay more for the pink product, are doing something. The odds are, after the first day of October, the cap has been met. The manufacturers are now left with 30 days of huge profits.

Don't get me wrong - I think businesses have every right to profit. I don't begrudge a company their money. I DO, however, begrudge it when it's done in deceitful ways & profits from the suffering of others. If companies are truly concerned about fighting breast cancer, then let them donate a proceed of the profits without a cap. Then, I could get behind them. As it is, that will never happen. There's just way too much money to be made off the pink ribbon.


I'll post a link to part two of my story on Patch on Sunday. Until then, I hope that you will:





 

Tamoxifen?

Today, I go see Dr. Nakajima, my oncologist. I've been taking Tamoxifen for the almost past 2 years. However, he needs to see if I've become menopausal; if I have, then we need to change the meds I take. I have to say - I highly doubt that I am. Ever since going off the Tamoxifen, my endometriosis is worse, & I've been in a lot of pain. This is driving me crazy! 

The thing is, from everything I've read, the Tamoxifen should have been making the endo worse, instead of helping to keep it in check. Another case of my body not reacting the way it should. Add that to still have neuropathy issues, and these last weeks have been hell. I can't WAIT until cancer is done with me.

I'll let you know what happens today, but probably tomorrow. My column is due today, and I only have it half way done. Yikes!

Relay for Life Part One

As I mentioned in my last update (what, two, three weeks ago? – yikes!), was invited to New Hope to speak at a Relay for Life event. Gotta tell ya’, I’m OK at speaking when it comes to my work or at homeschool functions. Speaking – out loud – about my experience with cancer was odd. And I know you’re thinking that I’ve pretty much lost my mind; I’ve told you every little thing that’s happened along this journey of mine. But there’s a difference – a dumb one, but a difference nonetheless.

I was asked to speak about it in my capacity as a columnist with AOL’s Patch, who I write for. I was concerned because I didn’t want to be known as that breast cancer survivor who writes a humor column for Patch. I want to be known as the humor columnist, who also happened to beat breast cancer. That may sound like one and the same, but not to me & my addled brain.

Now, here’s the REALLY weird catch – I wouldn’t have been asked to speak had I not spilled my battle with cancer to my readers at Patch. I never once considered sharing this journey with Patch readers. Like I said, I wanted to keep both things separate. For some reason, though, on Mother’s Day, I felt a need to write about it. If you’d like to read the article, click here.

I have no idea why, I have no idea that the timing would prove significant, I just knew it was time to tell my story to my Patch readers. I have a strong faith in God; you simply can’t go through the type of Hell that I went through without either having it strengthened or forging the beginnings of that faith. For me, it was simply a natural progression in my journey.

Don’t get me wrong; I had days when I railed against God. More specifically, when I was enduring my third surgery for the MRSA infection I contracted during the mastectomy.  And even more so when I was in the hospital for almost a week with the wound kept open, having the packed bandages changed twice a day, and watching a beautiful snow fall outside my window. I was so lonely, because my family & I love snow storms. We pop corn, light a fire, and watch as the snow drifts to the ground, turning the world into a magical wonderland. I was angry as I sat in my hospital bed alone, knowing that my family was home, missing me there with them. Thankfully, it was a hissy fit and I got over it. You really kind of have to put it into perspective – I was ALIVE.

Alive.

Many women didn’t survive this disease, and the odds were even worse for women who had it at the stage I did. I still have demons I battle, and I’ll tell you more about them. But for right now, I’ve digressed – big time.

So, due to my decision to share my battle with my Patch readers, Linda Pickett saw it and asked me to come and speak.

I’ve never been to a Relay for Life event before. I’m just now getting mobile again, in between reconstruction surgeries. But I was impressed by the people there. We walked around, and saw all the tents that were pitched. The camaraderie was palpable. Still, I’ll be honest, I was uneasy. Goes back to that whole keeping my identity separate. Hey, I’m a super hero in my own mind – keeping my two identities separate.

Come on, give me a break – I’m old. I can have delusions of grandeur once in a while, can’t I?

Part Two, where I tell you all about the awesome people I met there, coming by the weekend!!

Relay for Life - New Hope

Today, I went to New Hope to speak at the American Cancer Society Relay for Life at the invitation of Linda Pickett. She'd read my article "Different Kind of Mother's Day" in Patch. I had an amazing time & have lots to tell you about. I'm going to have to do it tomorrow, though, as I'm so, so tired. Plus, since I was operated on recently on my left boob, it's bothering me. I also have pictures to go thru, plus I met an AMAZING musician, Abraham Weaver (aweavermusic@yahoo.com), his wife and their daughter. I'll be giving his specifics out as well, since I think he I & his beautiful family are awesome.

Will post photos tomorrow! In the meantime, good night. And good night to all those wonderful people who are spending the night in tents at New Hope-Solebury High School tonight as part of the 24 hour Relay for Life. God Bless them all.

Oh, & Jack, you were one of the highlights of my day! Thank you.

Second surgery on ol' lefty is done!

I had surgery on ol’ lefty Thursday morning; round 2. If you’ve been reading me, then you know that I had a mastectomy on the right breast, and what I teasingly call a “half-ectomy” on the left. Due to the area where they took the lump from the left side, the nipple pointed down and to the left. And, no, I promise I won’t tell any more jokes about it being all embarrassed, and how the “twins” are fighting with each other & making my life intolerable.

Anyway, they did a breast lift, and so far, it looks like it’s evened the girls up. Next, after I heal, they’ll put a nipple on the bionic, baby Barbie boob. Hopefully, that’s IT for surgeries due to this damned disease!

I have to be honest – I’m a little surprised by how painful this was. Dr. Topham had said that the implant surgery (the first to try to even me out) was more painful, so I was taken by surprise. After the last implant surgery, I needed additional pain meds, so I decided to be pro-active this time. I asked them to write for more, since they can’t phone them in. Plus, it’s an hour & 15 minute drive to the doctor’s office in Philly, & I wasn’t in the mood to make that trip for a prescription – even if I was really hurting. I tried to make the original script last, but honestly, it was difficult. I was happy that I’d asked for the additional medicine; we filled it. But, on the bright side, I don’t think I’ll be needing all of it for this surgery. I should be good by Wednesday & just be on aspirin.

The reason I bring this up is that I NEVER ask for more medicine before going home from surgery. I usually try to make do with whatever I’ve been given – and I’ve suffered. I guess I’m finally at the point where I’ve had more surgeries than I care to have had in the past two & a half years. I’m to the point where I know myself, and I know the possibilities of how much I’m going to suffer. I’m done doing it. And that’s why I’m telling you about it. If YOU, like me, have been mousy about asking for help with pain – knock it off! This stuff hurts and it’s no picnic. You’re not going to become a junky; don’t feel ashamed for asking for medicine. If you need to reach for a pill – reach for it. Don’t let the stigma of taking narcotics make you suffer.

The road we’ve traveled has been hard, difficult, hopeful, sometimes funny, often times frustrating, terrifying, full of inspirational people as well as those that aren’t quite so inspirational, sometimes silly, frequently embarrassing, and the list goes on. We’ve experienced more emotions in a few years than some people experience in their lives. Heck, our loved ones have experienced them as well, no matter how hard we try to shield them. Please don’t add misery without help intrude on an already difficult journey. Speak up!

 I hope that if you’re just starting out on this journey, this blog has been helpful. I hope I’ve told you what to expect as you go on. I hope that you know you aren’t alone. I hope that if you need to reach out, you’ll contact me. If not me, someone. This is not a journey that is best taken alone.

But most of all, I hope that I’ve given you a small bit of comfort, and maybe a smile. Laugh when you glue your eyes together trying on a pair of false eyelashes or when you almost blind yourself trying to take a picture of them growing in. Giggle the first time your wig goes askew or flies off in a good wind. If something strikes you funny while you’re sitting at chemo, laugh! Strike up a conversation with those around you; I did. And boy, did I meet some amazing women and heard some fascinating stories.

No matter what, life is what we make of it. This cancer thing sucks – hard. And it isn’t easy. Still, I hope that as you go on, you find the humor in it. It gets better. I’m living proof.

Happy Mother's Day!! Here's a video that my kids presented me with; but I'm not proud or anything!!

The Hat Song

I’m Still Here, just busy!!

Sorry for not writing in a while; just want to let you know that I’m alright. Things have been crazy. I’ll update you with what’s going on with my boobs first. Men, if you’re squeamish about reading about my boobs, I’ve sectioned off that part so you can skip over it. OK?

Lots of boring boob talk – men, feel free to skip:

When I last wrote, I told you that the saline implant in ol’ lefty doesn’t match my new bionic, baby, Barbie boob (also known as ol’ righty). One of Dr. Topham’s interns actually asked me, with a straight face, if I’d prefer to have them reduce the size of the new Barbie boob rather than try to increase the left one. I almost slapped him.

Here’s the thing; I’ve gone through life with medium sized boobs (also known as a B cup). After having one removed and half of the other taken, I was bound and determined to know what a C cup looked like – on me. So when Skippy dropped that ridiculous bomb shell, I actually laughed out loud. And then I realized that he was serious. Thoughts of tackling him came to mind, but instead, I managed to compose myself. I figured I’d show my petulance in prose (awesome sentence right? Took me about half hour using the thesaurus and the dictionary to come up with that one!).

I explained, through gritted teeth, that there was NO WAY I was going to have my brand new perky Barbie boob that was even bigger than a C cup, reduced. In fact, the only way that a scalpel was coming anywhere near Barbie was if, like its predecessor, it tried to kill me. So, now I’m going to have another surgery – hopefully, my last.

The thing is, the implant on ol’ lefty seems to have traveled – to under my arm. So now the nipple is not only looking down, it’s looking to the left. It’s a very sad thing to see and I try to give it a pep talk every now and then to cheer it up. And I meant, literally hoping it would perk up – vertically. Sadly, it still hangs its head in shame.

Soooooo, up next, appointment with Dr. Topham. Now, going to be honest here. LOVE Barbie boob, kind of annoyed that I have to have surgery once again to try to even the two girls out. If things don’t go well – again – then I think my next move will be to go see my original booby daddy, Dr. Morrissey. Bonus, he’s just a 20 minute drive away as opposed to the hour & a half it takes to get to Philly. Here's a reminder about what he looks like:

My appointment is this Friday, April 27^th. I’ll let you know when the next surgery is scheduled for! Keep your fingers crossed.

Boob talk over men, you may resume reading!

The miracle that is my son, Dakota:

The reason I had to reschedule my appointment with Dr. Topham was that Dakota was at Children’s Hospital – for the third time in 6 months. That sucks, but the good part about it is that he’s alive. He was born with a very rare, severe birth defect called, “Pentalogy of Cantrell”. It’s comprised of 5 defects – holes in the heart, missing the outer covering of the heart (pericardium), cleft sternum, holes in his diaphragm, and a large omphaloceale (stomach doesn’t close – intestines & part of his liver grew outside his body). It’s almost always a death sentence. In fact, Matt & I have only located 15 other survivors. He was stabilized at St. Luke’s in Bethlehem, then taken to St. Christopher’s Hospital for children where the diagnosis was made.

It’s the omphaloceale that keeps sending him to the hospital with bowel obstructions. When he was three, we went thru the “summer from Hell”, where he had three bowel obstructions resulting in one surgery for the obstructions and it was also determined that he had a hernia. He had another surgery that summer.

The thing is, we never knew that bowel obstructions were common after omphaloceales. The first time it happened, I just thought he had a stomach flu. We rushed him to his pediatrician, who sent us to Grand View. That’s where he was air lifted to Children’s Hospital. Before they left with him the nurse told me to kiss him goodbye. I don’t remember exactly how she put it, but she basically made no promises that he’d survive the flight. Scary stuff.

If we hadn’t lived in the Philadelphia area and had not one, but two of the best children’s hospitals in the world, Dakota would not be alive. Period.

Writing news.

My latest that’s running in Patch is about not having a clue about abbreviations used in texting. Here's the link:

Have U Mastered Txting Shorthand?

Next up, I’m going to post an article that was written by someone who is disillusioned with Susan G. Komen. It’s very eye opening. Look for that in the next few days!

Before I let you go, thank you. Thank you for taking the time to read about me, keeping up with what’s been going on, and for your prayers. I love the emails as well. I’m very, very lucky to have people, many who I don’t know, check in on my progress.

Thank you so much.