Friday, March 25, 2016

Stage 4 - A New Life Begins


If you’ve read my blog before, you know that I wrote each and every little thing that happened to me from diagnosis to when I thought I was cured. It was a way for me to release inner fears, but it was also meant to help others. I was always candid, and as you may know, always silly. This go ‘round is different for a reason. But first, let me catch you up.

In October, I went for my yearly scan - the magical 5th year. Supposedly, if you get to year 5, you’re in the clear. I took my daughter with me and we went to lunch and shopping afterwards; kind of a celebratory day. Until dinnertime.

The phone rang and it was my oncologist, Dr. Nakajima. He informed me that they had found something in the scan. There’s a spot on my spine, a little bit on my liver, and an enlarged lymph node. He said he was pretty sure my cancer had come back. As I spoke to him, all 3 of my children and my husband, Matt, came into the room. The look of horror on their faces as they heard my side of the conversation and figured out that cancer had come back was heart breaking. Dr. Nakajima said his nurse would call in the morning to line up all the necessary scans.

I hung up the phone and looked into the stunned eyes of my family. And then we cried. After several minutes, I kicked into mommy mode. I told them the truth, that it was very, very early in the cancer, as far as Nakajima could tell. And he’d said that it was very treatable, and I said that over and over and over again.

I couldn’t stand myself. I was the one who let cancer invade their lives again. I know I didn’t ask for it, didn’t want it, and was definitely frightened of it, but if not for me, our lives would be our family’s version of normal. It’s a bitter realization, and yes, I know it’s not my fault, but I’m still responsible. When you’re a mom, bringing any kind of sorrow into your children’s lives is tantamount to opening the door and inviting Satan in.

The funny thing is, Matt and I had just returned from a long, celebratory weekend to Ocean City. We hadn’t been there for a while (cancer kinda gets in the way), and there’s an old historic hotel, The Flanders, that I had wanted to go to for the past 25 years. We went there to put a period on the last 5 years and to begin another chapter in our lives - one that didn’t have cancer as part of it. I even made a slide video; you can see it here. It was wonderful, and I’m glad we went, but the irony isn’t lost on either of us.

I had a few scans, including a PET scan. I’m going to go off topic for second, though, because I think it’s important for you to know what to expect when you’re told you need a PET scan. I was told that it would take a few hours, so the night before, I charged up my Kindle and off I went in the morning. And here’s what they DIDN’T tell me. I couldn’t read my book, a magazine, a phone book, nothing. I was injected with some kind of dye, and told I had to lay still for 90 minutes (yup, an hour and a half). No reading, since even that small eye movement would light up like a Christmas tree. Folks, I’m a fidget and being still for 5 minutes is difficult. Being in a dark room, lying on an uncomfortable gurney, listening to their “soothing” music (if new age is your thing, then, yes, I guess it was soothing. It just irritated me and made the time slow to a crawl), I lay there. New age music has its place - just not in MY musical repertoire.

In what seemed like years, rather than an hour and a half, the nurse came in and I was brought into a room with a machine that rather looked like an MRI machine. The rest of the test took maybe 15 minutes, and I was finally done. Why am I telling you this? Because if being still for an hour and a half, while enduring crappy music is your thing, then a PET scan is going to be a piece of cake. My advice? Bring some music you actually like with you. It’ll make the time pass quicker - I think. I hope.

But as usual, I have digressed. Back to the story.

It was finally confirmed - I was now living the Stage 4 lifestyle. New medicines, more drugs, more pain, and a life that was now going to be full of scans and blood tests. For the rest of the time I have left on this earth.

But, on the bright side, there was a new medicine called “Ibrance” that just came on the market. It’s being touted as a new wonder drug, and can extend the length of my life. At Fox Chase, where Matt and I went for a second opinion, Dr. Carlson confirmed Dr. Nakajima’s opinion that due to new therapies, coupled with how early the cancer was caught and that it’s a slow growing cancer, my outlook is pretty good. And that’s what brings me to why I haven’t been too vocal about it for all these months.

I have several friends that I’ve met on my journey, ones that are really, really sick. I’m going to lose a few within the next year; one I said goodbye to last year. I don’t feel right announcing this on my FB page or any other social media right now. These women won’t have the necessary criteria to use the new medicine. I wish I never had to make this announcement, pray that I won’t lose any more friends, and hope that no other woman or man has to deal with breast cancer or any other form of cancer. But sadly, none of those dreams will be realized anytime soon.

Cancer is insidious and is an equal opportunity destroyer. It changes you, it frightens you, and you experience thoughts and feelings that you probably would never ponder until it breaks down the door of your life and and invades like a Storm Trooper. There is no Obi Wan Kanobi, no magic pill, no cure. It is now going to be part of the rest of my life and the lives of my beloved Matt and our children.

On the bright side, with the support of family and friends, there will be many happy days to come. Life continues with all its milestones, including the fact that on May 14th, our daughter, Elyse, will marry HER Knight in Shining Armour, Rob. We have a bridal shower to plan, a service to attend, a reception to hold and a new son to welcome. Life continues and it’s still wonderful, full of love, happiness, and many more joyful memories.

I’ve decided to look at this new part of my life with hope and the same humour coupled with the goofy escapades that have always been a part of who I am. I will fight and I’m sure I’ll stumble. But that’s OK, because that’s part of life.

I’ve chosen to embrace hope. The human spirit, our belief in God, and our love of family and friends are things that cancer can’t take away from us.  

And that is what will make us triumph over cancer.

 
(If you’d like to get in touch with me, feel free to “like” either one or both of my Facebook pages, “The Brunette Lucy” or “The Brunette Lucy vs. Breast Cancer”)







Friday, January 15, 2016

Cancer, Stage 4 - exit left!

It's funny how the human mind works. After I'd been cancer free for a few years, I stopped keeping up on this blog. I guess it was because I figured that if I didn't talk about it anymore, cancer would die from neglect. But that's the thing about cancer, it really doesn't care whether or not you ignore it. IT makes up the time schedule, whether you feed it or not. Sometimes, it decides that the battle should begin anew. It's reared its ugly head, and has challenged me to another duel. I am now Stage 4 - my cancer has metastasized.

Due to other health issues, my niece, Melody, has dubbed me the "Queen of Beating the Odds". Well, it's time to pick up the crown, give it a good scrub, and put it back on my head. Along with a hefty suit of armour.

It's time to go to war.

I'll write more this weekend, but let me say this. There is an arsenal of new medicines that have just recently (within 3-6 months) been approved in this fight. And I intend to use each & every one of them.
 







Thursday, April 10, 2014

New nipple - hopefully

Well, folks, Dr. Morrissey tattoed my new nipple a few weeks ago. It started out really dark, and didn't match ol' lefty even a little bit. He said it'll lighten up, which is has, but it's not quite a match. We're going to wait a few months & see what happens. And hasn't that been the story of my battle with cancer to date?

Anyways, I've finally decided to write my book about my battle with cancer. Just as I've been here with you, I'm going to be very candid about what I've been through. I just recently realized that I was Stage 3c, which is one step away from metasticizing. Translation - whole different outcome. I would have been annoying the daylights out of St. Peter to let me thru the Gates of Heaven. I'm Lucy, though, I can annoy even a Saint. So I'm a very, very lucky girl. And St. Peter can breathe a sigh of relief that he doesn't have to deal with me yet. Then again, I might be going the other way.

Keep your fingers crossed that I can finish this book! I get distracted easily and . . . . . oh, look, a butterfly!
 

Monday, January 27, 2014

It's late & I'm heading into bed soon. I'm up, though, cause I have an appointment with my oncologist, Dr. Nakajima. I have to have a real talk with him - and I haven't told you about it because I don't want you to worry that you may experience the same thing. I'm pretty sure I'm in the minority.

Anyways, I've been experiencing shooting pains from my elbows to my hands. When it reaches my hands, they tingle, itch and/or feel like they're being poked with a hundred needles. Needless to say, it isn't pleasant. Couple that with my joint pain, the pain that radiates from my back to my front legs all the way to the soles of my feet, & I'm hurting a lot more than I thought I would at this time.

Let me be REALLY CLEAR, though! I contracted MRSA during the mastectomy & spent months trying to knock it out. I had 3 additional surgeries & an extended hospital stay so they could administer IV antibiotics. They also left the wound open, packed it, & cleaned it. It wasn't pleasant. Then I had the max amount of chemo they could give you followed by 6 weeks of radiation - a lot of people don't have to go thru that many. What I'm experiencing is unusual. Please don't think that because I'm sharing this with you that it's in any way normal. If you have any questions, or want to pick my brain, please leave a message either at the bottom of this blog or directly to me at tamkells@gmail.com. Please put "cancer" or something like that in the memo line, though, so I know it's okay to open the email.

Anyways, I've been having pain & Dr. Nakajima gave me pain meds a few months ago. I don't want to have to continue to take them, which is evidenced by the fact that I don't get in touch with Dr. Nakajima before any appointment to ask for more. I take them sparingly, but the fact of the matter is that I need to ask him for more.

The weird thing is that I'm nervous about doing that! Matt keeps telling me that I just went thru Hell, & am dealing with painful side effects & that's his job to help me. Still, I don't want him to think I'm trolling for drugs. Matt made me promise I'd ask though.

I'll let you know this week what happened. Also, if you have ANY suggestions about dealing with this neuropathy & the tingling/numbing/needles sticking in my hands, I'd sure appreciate your input.

K, gotta get to bed. It's after 2:00 am! Thank you so much for your continued prayers.



Tuesday, October 15, 2013

PINKTOBER (or, shoot me now)



During Pinktober, I and my fellow cancer bloggers, rail about the world turning pink and all the money to be made by slapping a pink ribbon on just about everything. However, for the record, I want to thank everyone who purchased the products, signed up for the walks, and wore (or wear) pink ribbons. I know that you wanted to help, and thought you were doing so. I can’t tell you how deeply I appreciate what you’ve done. BBC (before breast cancer), I did the same thing because, like you, I never knew the truth. Still, if you want to wear the pink ribbon – you go right on ahead! I’m not offended! I think you’re awesome; I just want us all to take the next step & demand honesty from those that claim to be helping us find “the cure”. Again, thank you for wanting to help the cause and women like me. God Bless You.



I can’t help it, but every time Pinktober rolls around, I think about Ralphie in the movie, “Christmas Story”. Aunt Clara made a big pink bunny suit for him, which his mother forced him to try on. As he comes down the steps, his mother thinks that it’s adorable while his father shares in his son’s horror. He says that Ralphie looks like a big pink nightmare. All I can think about is the other months, staring as October is forced to wear pink; you just know they’re all laughing and pointing. Which is sad, because October should be equated with falling leaves, apple cider, pumpkins, and Halloween. 

Sadly, like Ralphie, it’s now just a big pink nightmare.

I have my own rants coming your way about this time of the year when all the world turns pink and companies slap a pink ribbon on just about everything. Hey, there’s money to be made! But before I rail, I want to share a post from my blogging sister, Ann Silberman. Ann is a metastatic cancer patient, and is fighting each and every day. The way I see it, if anyone can beat Stage 4, it’s Ann (and my friend, Stacy).

You can keep up with Ann on her blog, “Breast Cancer? But Doctor – I hate Pink”. Here’s her story about being contacted to help a guy “save man’s real best friend – boobs”. Ugh. Wouldn’t it be nice if the emphasis was on saving the woman, not the boobs? Anyways, here’s what Ann had to say to the idiot:


Look at this jerk. He actually wrote me a private message and asked me to support him in his effort to save "man's real best friend...boobs." and asked me if I wanted to "rock a tee shirt" like a dying woman has the energy to "rock" anything, and support Komen and some damn race. He didn't bother to call me by name, (more evidence that those of us with mets are not people) he didn't learn my stance on Komen, didn't even gather a little clue by the name "I hate pink." He just blithely asks me to help him get MONEY so he can enjoy himself. He's spamming me, obviously, but hey, it's for the "cause" How could I possibly object?

My response? In part: "I, along with many metastatic women, do not support Komen and won't have anything to do with them. Komen does not help the ONLY women who will die of breast cancer - those of us with metastatic disease. Out of hundreds of millions of dollars raised, Komen donates only 17% towards research that could possibly result in a cure. The rest of their money goes to throw parties and races for the "Survivors" which also include women who never had cancer. Their profound focus on early detection has caused tens of thousands of women to lose their breasts over a disease that is called DCIS which could never, ever have killed them. Research would help them too.

I am dying of cancer. It is not cute, it is not pink. It is not about bras, and it's not about "rocking" anything.

You want to show support for women with cancer? Than learn something, don't just do something you enjoy already (exercise) and pretend you are helping. Read my blog. Read sites like "Think Before You Pink." Watch the movie Pink Ribbons, Incorporated. Read the New York Times article (where I am quoted) here:

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?ref=magazine&_r=0

Ugh, I hate this month, where every idiot in the world wants to make a buck off the suffering of the 40k women who will die this year of breast cancer and everybody thinks because I have written about my terminal disease of breast cancer I MUST support Komen. That is how brainwashed they have people.

Do not help this guy and in fact, let's get the word out that if he wants to run in a damn race then he should effing pay for it himself. His prizes for donations include such sensitive and charming items as "sweater puppy solo cups"

UGH UGH UGH UGH UGH

I suggest you ask any other metastatic women to support you as you will likely get a very similar response.




Thanks, Ann, for always telling it like it is. If you’d like a REAL eye opener at how low Komen will go to get money for feel good walks & parties, check out Ann’s latest post on her Facebook page. You can read it here.

Un freaking believable.


Sunday, September 1, 2013

Houston, we have a nipple



Looking back on recent posts, I see that I have been remiss in telling you about what you get sent home with once you have a brand new nipple. Ready to find out what this sci-fi like technological wonder is?  Really? Okay, heeeerrrreee it is:


It’s a piece of foam that they cut a hole in, held onto your breast with tape. Don’t get me wrong; it works. The thing is, after seeing all that they can do with rebuilding my boob, I expected there to be some amazing contraption (that I never would have dreamed of) protecting the new nipple. Eh – the point is, it works, so there you go.

The second nipple surgery has gone quite well! Plus, Dr. Morrissey didn’t need to do a skin graft or take fat, so there wasn’t any pain – woo hoo! It’s looking good, well, with the exception of the ugly black stitches. Ever notice how black looks even darker when it’s up against a light colour? I’m so white, I glow in the dark, so the stitches are kind of scary looking.

The good news is that there has been no oozing or scabbing this time!! The bad news is that it looks like a little cone head. Hopefully, that’ll change in time, or else I’m going to look perpetually cold.

I see either Morrissey or Jason next Wednesday. I’ll let you know how it goes!

In the meantime, here’s a big head’s up!!!

YOU CAN NOT WEAR UNDERWIRE BRAS IF YOU’VE HAD DIEP FLAP RECONSTRUCTION SURGERY (and probably TRAM flap surgery as well).

Dr. Topham told me this, but that was a while ago. I guess I conveniently forgot, as at the beginning of summer, I was going nuts because I needed a strapless bra. Ever tried to find one of those bad boys without a wire in them? Trust me – it’s like rooting for truffles in a fish tank. I’d found this really cute dress, but it was strapless. Finally, I decided that since it was only this one time, I dug out an older strapless bra – with underwire. I trotted around, all happy with my smart self, arrogantly thinking I knew what I was doing.

Until that night.

I took off my bra, glanced down at my boob, & saw that it was misshapen – really, really misshapen. It looked like something out of a sci fi movie. I freaked out a little.


Okay, I freaked out A LOT. But it was the weekend so I couldn’t call Dr. Topham and let’s face it – a trip to the emergency room was out of the question. Although if I’m being honest, it did cross my mind. Fortunately, the boob was back to its normal boob like shape in the morning. Crisis averted.

Still, I wanted to find a strapless bra that didn’t house those little torture wires; I began to look everywhere. They have plenty of those boob squishers called “bandeau bras”. If you happen to wear a cup size over “B”, then this isn’t for you. Well, that is unless you want your boobs flattened, sending them migrating to your back, thus parking your nipple in your armpit. If that’s cool with you, then have at one - and send pictures.

However, one glorious day, I took Boy to the Philadelphia Outlet mall, where I saw a Maidenform store. I knew that I wouldn’t be able to sleep if I didn’t at least give it a shot, so I went in. A really sweet girl (who I took to calling Angel when I retold the story) asked if she could help me; so I told her that I was looking for what constitutes the Holy Grail of bras for reconstructed boobs. She thought for a second, then went towards the back of the store, stuck her hand in a display, and brought out a wire free strapless bra.

I had to blink my eyes really fast cause I could have sworn I saw a halo glowing over her head.

I asked if there were more of these treasures hidden throughout the store, and she sadly informed me that she was surprised they had this one. Oh, well, I didn’t care, I had the elusive wire free strapless bra in my hot little hands and I was happier than a politician with an original idea (whoops – that’ll never happen so let’s just say I was happy). Just at the moment I thought Nirvana was mine, my salesgirl asked if it was the right size.

What?

I stood there gaping at Angel as in my mind her halo fell off her head and Elvira, Mistress of the Night, was looking back at me instead. It’s amazing how quickly one can go from joy to despair.

Thankfully, the band size was correct, but the cup size was one size too small. I thought for several moments, then made a decision to buy the bra. I figured that as long as I had one of those nipple foam devises to protect my new addition, I was gonna jam those bad boys into that bra like I was stuffing a sausage. All was once again right with the world and I took my bipolar self out of the store; of course, after thanking Angel profusely.

Naturally, I wanted another one of these miracle bras, and came home to begin my search on the world wide intranets – only to find that they no longer manufacture this well made bra. Well, of course they don’t – it’s comfortable. My friend, Dorothy, said that maybe I could take wire out of a bra, which was brilliant! So I grabbed an older one out and began the task of yanking the booby destroying wire out. A few cuts, several gashes, a myriad of curse words that I didn’t even know I knew and well over an hour later, I triumphantly held the wire in my bloody little hands. I put it on, and grabbed a shirt. While my arms were heading north to put the shirt on, the bra was headed south. Or, I found out what keeps most bras up – and I’d just removed it.

I’m still looking for a comfortable wire free bra. Wait, I should amend that to strapless. You can find many regular bras without the little torture wires, but that’s because straps hold the girls in place. I have no idea what miracle produced the Maidenform bra, but I’m still looking for another one.

To that end, if you ever stumble upon a Lilyette (made by Maidenform) bra, style #457, would you give me a holler?

This Wednesday, I think Morrissey will take the stitches out of ol’ righty here. Soon, it’ll be time to tattoo her so she looks like lefty. I’ll be sure to let you know, in mind numbing detail, how it looks as we near the finish line. Why should things change now?




Thursday, August 22, 2013

Just a quick giggle

I'm getting a post ready, but until I put it up, I thought I'd share this with you.

If you love something, set it free. If it comes back, it was meant to be...if it doesn't come back it was never yours to begin with. BUT, if it just sits in your living room, messes up your stuff, eats all of your food, uses your phone, takes your money and doesn't appear to realize you set it free...you either married it or gave birth to it!

And you'd get all this silliness for free if you "like" my Lucy page on Facebook. I have NO idea why that's important, but supposedly it is. I contend that my readers are like me - technological troglodytes. We're only using the web for important things, like shopping. In fact, one of my dear readers sent me an email about the time she tried to find my Facebook page, so she had her son Google "The Brunette Lucy". 

And that's how I found out there's a porn star out there going by the same name. 

Anyways, here's my stupid Facebook page in the event you're bored & want to scroll thru & read some of the dumb stuff I post (like the above). Just click the link & my big ol' face will show up (my big ol' AIRBRUSHED face)! I'll never be accused of writing the great American novel, but I sure do think of stupid stuff. That counts for something, right? Okay, here's the link:

The Brunette Lucy

Before I let you go, I have to show you the sweetest, most adorable nurse ever in the whole wide world (aside from my daughter, Elyse). Her name is Kyriel Manzo and she's awesome. She, like Jason (you can see his photo below) work for Dr. Morrissey. Soo, like I always say, if you need a plastic surgeon, see Morrissey. He's a talented surgeon & his staff is the best.

Here's Kyriel (with her dog Bruno):






Isn't she adorable??


I'll post about my second nipple surgery soon! Then I'll tell you about my visit with Dr. Nakajima (oncologist). I have the most interesting conversations with nurses. Here's a hint - we spoke of undergarments of the steel belted, rearranging your innerds persuasion. 





 
My guestbook