November 27, 2013
It’s official. MG has lost her melanoma mojo. It has been whisked away by the Big O. Otherwise known as ovarian cancer. That nasty cancer has reared her ugly head again – for the third time.
Most of you are aware that while I was in remission from stage three melanoma, I was diagnosed with stage four ovarian cancer. It was caught on a CT scan. Talk about a total YIKES. That was two and a half years ago. Since then, I have had two major surgeries – a full hysterectomy and a bilateral mastectomy, countless biopsies, and two separate rounds of chemo. Along with the genetic testing that proved I carry the BRCA2 mutation. Basically this just means that I am much more susceptible to cancer. Duh.
A couple of weeks ago I had my quarterly bloodwork and a scan, and sure enough, it is back. Floating around in my body a mere six months after I finished my last round of chemo. Didn’t even make it to a year this time.
Forgive the sarcasm, but I am kind of over it at this point. Thinking I should change my name from Melanoma Girl to Malignant Girl.
My oncologist presented us with three options. First, a clinical trial. Next a drug that is an antibody, not a chemotherapy drug, but has shown success when treating ovarian cancer. Third, and my fave – good old chemo. The problem with chemo is that while it does knock it back down, it does not stay down permanently. It is just a band-aid at this point. The periods of remission are getting shorter and shorter. So we need to look at other solutions.
I started the clinical trial this week. Wouldn’t you know the first full day I end up in the ER? Allergic reaction to the new meds (kind of seemed obvious when it became hard to swallow). Not sure if I can continue on them or not. We are meeting with the doc again on Friday to revaluate.
Soooo, needless to say I have not been a happy camper lately. As you know, this whole cancer thing can be a bit of a downer. Even the normally plucky MG has been feeling the effects of this challenging journey.
So what next for MG? As I mentioned, I kind of feel like I have lost my melanoma mojo a bit. It has been very difficult to focus on the website, FB page and planning lately. I still truly believe that awareness and prevention are the keys to reducing occurrences of this deadly disease. Everything we have done up to this point has hopefully helped to change at least one person’s perception about being safe in the sun.
The last thing I want to do is abandon ship. No worries – I am not going to do that! I have been giving it a lot of thought, and if you will allow me to, I may want to segue from melanoma to ovarian for a bit. For those of you who have been following my page and website for a while, you know that I started a blog titled “The Big O Diary” a couple of years ago after I was diagnosed with ovarian. I am thinking of reviving that blog and maybe even starting a FB page with that title.
I need an outlet for this disease. I had been hoping that if I ignored it, it would go away. No such luck. And now that it is proving to be more prevalent than the melanoma, I have to embrace it like I did with MG. No more fear. What do you think? Are you with me?
As always, I thank you for your love and support. I couldn’t have made it this far without all of you. I genuinely appreciate all of your well wishes and prayers. Hope you all have a wonderful Thanksgiving with family and friends. Most importantly, blessings to those of you who are going through your own cancer journeys, and all the best for a happy and healthy holiday season.
July 15, 2013
When in Doubt, Cut it Out
Allow me to preface this post with a small disclaimer – I AM NOT A DOCTOR. The following is just MG’s POV, so is in no way meant to dispense medical advice – it is just my opinion on a particular topic. Enough said.
As many of you know, I usually steer clear of medical topics and discussions. Mainly because that is not what MG’s message is about, but more importantly, because I am in no way qualified to offer any kind of medical advice, and most people tend to frown on that if you aren’t wearing a badge that says MD.
But after two recent encounters with people who clearly have questionable moles, I began to think and wonder to myself, “Why on earth would you leave those on your body?” I realize that biopsies and mole removals aren’t the most pleasant experiences, and that they leave scars. I still think, however, that that is a small price to pay versus the alternative option.
Based on my experiences with dermatologists, there seem to be two schools of thought. One – hmmm…well, it might be something but probably not…let’s just watch it and leave it on there…come back in six months and we’ll check it again. Or – oops – that looks kind of funky – I don’t think we should wait – let’s remove it now. I am not saying one is right and one is wrong – it mostly depends on the mole itself of course. Although some docs seem to err on the side of caution, while others wield the scalpel with ease.
I am not trying to be blithe here about a serious topic, but I have to say that I feel strongly about removing a mole in question. My choice is always to excise it. I do realize that after the past three years of dealing with various surgeries and endless tests, I have become much more tolerant of needle sticks than the average Jane (this coming from a girl who used to have to be held down in the doctor’s office when I was a kid to get a shot). This is not to say that they don’t hurt a little, but they don’t bother me as much as they used to. Plus, I have so many scars now that I am not really concerned about adding another. Plus, I have a new mentality about things on my body that may cause cancer – if there is any chance that my uterus, my breasts, or any one of my many moles could potentially end my life, please remove them, and quickly. Although I am not sure how I would feel if it were an arm or a leg or a major organ. I have definitely been lucky in that regard and know that would be a much harder decision to make.
So, if my derm had not removed that mole in question three years ago, would I be here now? No one knows for sure. I do know that I have met and talked with many people through MG who have for sure saved their lives and/or avoided serious risk, so to me it is a no-brainer. A small amount of pain and a scar for peace of mind? This MG says yes.
January 14, 2013
MG is going out on a snowy limb and declaring her love for winter. Some of you may think I have gone mad, but trust me; the chemo has not yet altered my internal thermometer. I do truly enjoy it. Winter is all about sensations for me. I love living in a part of the country that experiences the change of seasons. It must have something to do with that Yankee blood running through my veins (cold hands = warm heart!).
Ok – so as a disclaimer, this love of winter does not include extreme weather conditions. I do not relish below-zero temps accompanied by 30 mile-an-hour winds. Or being on the side of a mountain in a blinding snowstorm. Or standing on the shoreline during a nor’easter or hurricane. For me, there is nothing enjoyable about those types of conditions and that is not what I am referencing here.
What I am talking about is the warmth of winter (I know – sounds like an oxymoron, right?). And what might that be exactly? It’s the flush you get from bracing temperatures. I love how the frosty air gives your cheeks a ruddy hue. I love how beautiful everything looks after a snowfall. Fresh and clean. I love the smell of wood smoke emanating from rooftop chimneys. I love wintertime activities. Walking the dog amongst the flurries. Sledding and making show angels. Cross-country skiing and snowshoeing. Believe it or not, I even actually like to shovel (mom probably won’t believe this part). But mostly, I love being able to see your breath in the air when you breathe in and out. It makes you feel truly alive and invigorated.
MG’s four-legged BFF, Gracie, also loves the winter. She sits patiently while I put on her sweater. She springs around like a bunny once her feet hit the snow. She sticks her nose in it and then prances around. I think she forgets that she is a Boxer and not a Siberian Husky or St. Bernard.
Probably the best part of the winter though is coming back inside after spending time outside. Feeling that rush of warmth as you enter the house. Kicking off the snowy boots and downy parka. Feeling the numbness leave your fingers and toes. Making a hot chocolate (add Bailey’s to mine please!) and having it warm you from the inside. Winter evokes a sense of snugginess. It makes you want to spend time indoors with family and friends. Cooking meals together and playing board games. There is just something homey and inviting about it.
MG is also a fireplace junkie, which pairs well with winter temps. I love the ambience, warmth and all-over coziness of a fire. There is nothing more delicious than curling up with a glass of Pinot, blanket and a new book in front of the fireplace. Especially on a snowy afternoon. Totally the best.
Being a melanoma survivor definitely helps me appreciate the winter more too. It is so much easier to be covered up in 30 degree weather versus 80 degree weather. Sunscreen application is limited to the face and neck instead of your entire body. Sunglasses are still a must though – especially with the glare from the snow.
I know you snowbirds out there will adamantly disagree, and I respect that. I am not Florida or Arizona-bashing here. Warm states definitely have their advantages and I enjoy visiting them. But I could never live in one (well…don’t quote me on that. If I make it to a ripe, old age I may change my mind). But for now, give me New England! Bring on the snow!
November 19, 2012
The Big O Diary – Round 2 – Post 1
The Big O Diary is back! Why??? Because I have ovarian cancer again. Ugh.
The verdict came in late last week. I had some spots on the CT that were questionable, so had the PET scan and then an unpleasant biopsy to confirm the origin. Results show ovarian cancer, and no melanoma.
Now how is that possible since my ovaries, uterus, and all of the rest of my “lady” parts were removed last summer? Because that devious little witch of a cancer got into my lymph nodes, and is apparently still floating around in my body. This time it resurfaced not only in my pelvic area again, but also on my left side under my rib cage in a place attractively named the gutter (space between my ribs and colon). Nice. They thought maybe it was melanoma since that was the general area of my original tumor, and it seemed unlikely that the Big O would have found its way over to that part of my body. Yet somehow those tricky ovarian cells managed to sneak their way in there. Bizarre. Gotta love metastasized disease.
There is plenty of good news, however. First and foremost – there is no cancer in any of my major organs. I am feeling incredibly grateful for that. Also, I don’t need to have surgery, I won’t have any hair loss, and best of all, I should be back in full remission at the end of treatment!
So, I start chemo again on December 3. Six rounds, once a month. I am dreading it, but my oncologist seems to think it will be easier this time around. I am really hoping she is right. I am also very happy that it is only once a month this time too so I can have a life and not be a slave to the schedule. I am going to be on a combination of Carboplatin and Doxil. Last time it was Carboplatin and Taxol. Apparently Taxol gives you the hair loss, so this time I won’t go bald – sweet! I honestly didn’t mind not having hair on my head, but the worst was losing my eyebrows and eyelashes. Talk about looking sick, plus my eyebrows are STILL growing back from last year! Soooo happy I don’t have to relive that.
Now we just need to determine logistics. Since the treatment is only once a month, do I move back up to Portsmouth or travel back and forth? Still have to figure all of that out. Due to lots of holiday stuff going on here, we are going to fly back and forth to Boston for the first treatment. Hopefully the return flight won’t be too miserable. It is only two hours, so will plan to sleep through it. That sounds plausible, as long as I don’t need a barf bag or extra fluids. Imagine if I ran the call button for the flight attendant and said, “Um, may I please have an IV and a bag of saline instead of the peanuts and diet coke? “ Do you think they would charge me an extra fee for that?
Last but certainly not least, I want to thank you all again for your thoughts, prayers and posts. I couldn’t get through all of the ups and downs without this wonderful community. I truly appreciate your concern and caring.
July 5, 2012
MG is all about making her own decisions. The good and the bad. When I was younger, I made a lot of bad ones. I was very immature and naïve. Most of them only affected me, but there were some that hurt others, and I wish I could change that. But I can’t. That is the thing about choices. You make them and that is pretty much it. So you need to make as many smart ones as possible. If not, then you certainly need to learn from them, so you can make better ones in the future. This is where I am now. Really thinking about my choices. How do they affect me and the people in my life? Now that I am 40, hopefully I am older and wiser (at least most of the time).
When I was in my teens and twenties, I made the choice to spend a lot of time in the sun. I lived 15 minutes from the beach and made it a priority to go there as much as possible in the summer. If I couldn’t get to the beach, then I would put my beach chair in the backyard, deck or driveway. I loved the sun. I would sit and relax and read for hours. It felt great. I am not going to deny that and pretend that I didn’t like it, or that I thought I looked better with a tan. I definitely did.
I used a tanning bed a couple of times but ultimately decided against it. Why would I pay for something that I could get for free? Plus, I am slightly claustrophobic, so the whole idea of enclosing myself in a burning capsule did not appeal to me. They smelled funny too and kind of grossed me out.
This is the thing about tanning. I feel that most people are not making informed choices. The message has either not reached them yet, or they have not educated themselves about the risks, or they are just simply ignoring it. The fact is that tanning is bad for your skin. Period. End of story. It may give you a summery glow and make you feel prettier or more attractive, but it causes significant damage and can result in skin cancer. Oh, and it can happen to anyone regardless of race and skin color. Again – fact. (For a complete list of UV-related facts, please see the Melanoma Research Foundation’s website – www.melanoma.org).
Now some people will get lucky and tan all of their lives and not get skin cancer. Sure – that can certainly happen. Someone can smoke all of their lives too and never get lung cancer. Here is the difference though. Every single one of us knows that if we put a cigarette in our mouths that we are increasing our risk for cancer. It has taken 30 years or so, but we now know it. The companies who make the product know it as well. That is why they have to put warning labels on their packaging. This is where we need to be with tanning beds. Ban them for minors and put warning labels on them. For those of legal age, let them know about the risk, so they can make an informed choice. Give them that opportunity. If they still decide to get into the tanning bed, then fine. At least they know the risk.
We are lucky to live in a free country. We can’t force someone to do something that they don’t want to do. What we can do is help to educate and encourage. This is what MG is all about. Planting the seed about embracing your skin just the way it is. It may take 30 years, but hopefully we can start moving away from the idea that we look better when we are tan. It needs to be a change in mindset and behavior. And we need to do more than just ban tanning beds. Why? Because the 16 year old who is not able to go to a tanning bed, but still wants to be tan for her prom, can just go out in the backyard and lie in the sun. She may be out there for hours. In certain cases, especially if she burns, this can be even worse than using a tanning bed. Therefore, MG’s messages of SPF – Sexy Pale Female, Realize the Risk and Be Sun Savvy are meant to embrace an overall approach to being safe in the sun.
I realize that some may say that if I hadn’t had melanoma I would not be pushing this agenda. They might be right. I will be honest and admit that sometimes I do miss the feel of the sun on my skin and the long days on the beach. When I look at old pics of myself with my super summer tan, I get a little twinge of nostalgia. But was it worth it? Unequivocally NO (thank you significant scars for that constant reminder). If I had known the facts, I could have changed my behavior. I could have avoided surgeries and chemotherapy. This is why I share my story and try to educate and encourage others about the risk. So that you can make better choices than I did. Informed choices.
I am very optimistic that as awareness for melanoma increases, the amount of people who choose to tan will decrease. We can return to an age where pale skin is celebrated. Coco Chanel started the tan craze 90+ years ago. I think her time is up. Let’s start a new trend.
KNOW THE FACTS. MAKE A CHOICE. AN INFORMED ONE.
As promised, I am conducting sunscreen reviews this summer. I want to focus more on all natural products, however, they are more difficult to find on the shelves at our local supermarkets and pharmacies. After considerable searching, I did find one recently at Target. It is Neutrogena Pure & Free Liquid. A daily sunblock with an SPF of 50. The label says that it is a broad-spectrum UVA-UVB, and that is 100% naturally sourced. The active ingredients are Titanium Dioxide and Zinc Oxide.
Since I am curious by nature and also a stickler for details, I called the company to further inquire about the ingredients and how it is “naturally sourced.” After holding for a few minutes, the nice woman at Neutrogena informed me that unfortunately she has no information on how the ingredients are sourced, and will inform the quality control department that they need to have more information available on that. Good idea.
I also checked Neutrogena’s website and it claims the following – “it’s formulated with PureScreen™ — a powerful blend of 100% naturally sourced sunscreen ingredients for superior broad-spectrum protection. Free of fragrances, dyes, oils, and irritating chemical ingredients, Pure & Free™ Liquid Sunblock is great for sensitive skin!” It is also hypoallergenic, fragrance-free and PABA free. So, overall the product seems to have some good attributes, yet it is not descriptive enough about what those naturally sourced ingredients actually are and how they source them. Digging in a mine? Picking off of a tree? You would think that the information would be readily available.
So, I cannot attest to the accuracy of how natural this product is, yet it seems to work fairly well. It is extremely thin and goes on dry and absorbs very quickly. It may even be a bit chalky and certainly does not add any moisture. You have to rub it in completely to eliminate the white residue, but it does go away. It comes in a very small bottle (1.4 ounces) and averages about $12.00. Pricey for such a small amount, especially when you have to reapply so often.
The reviews online are mostly good from an effectiveness standpoint. People seem to love the fragrance-free aspect, as well as the fact that it does not cause blemishes or breakouts when applied to the face. I did not see many comments from people concerned about the ingredients, or lack of specificity.
I may have to re-think my allegiance to Neutrogena. I have used their products for years, but am not sure if they practice what they preach when it comes to sunscreen. If a company representative cannot explain how the product works and where the ingredients come from, then you have to think twice about purchasing it. Hopefully they will work to upgrade their sunscreen standards so that consumers have all of the necessary facts in order to appropriately protect their skin.
As always, a wonderful resource for sunscreens is the Environmental Working Group’s annual sunscreen guide. The 2012 version is not out yet, but here is the link for last year.
Thanks and remember to Lather It On (but do your research first!).
Hi MG fans!
It’s official…I can now be with you anytime, thanks to a new chapter in MG’s history: Video Blogging. Check out my first post!
February 7, 2012
This is my first post in 2012, so Happy New Year! Or more accurately, Happy Groundhog/Valentine’s Day!
I am finally free of tubes and on my way to a full recovery from the recent double mastectomy. It is definitely weird to look in the mirror and see a flat chest staring back at me. I have been a C cup for most of my life, so I got used to having an ample bosom. It had its obvious perks (no pun intended), however, I am LOVING my new look. It is so refreshing to be able to slip on a comfy T with, wait for it – NO BRA. What an amazing feeling!
The next step is for the incisions to continue to heal, and then back to the doc in two weeks for my first enhancement. The plan is to periodically fill the tissue expanders until we get to a size that I am comfortable with. I am thinking B cup this time around. No more underwire for this girl!
The best part about having the final surgery behind me is that I feel DONE. Done with cancer for good – hopefully. At least for now certainly. Clearing out the cobwebs. Shaking off the residual chemo brain. Getting excited about the future. It is all so good.
I am starting to work on the MG spring and summer campaign for 2012. Keep your eyes peeled for website updates, new T-shirts and fundraising dates. I am also going to make myself available for speaking engagements again soon! Get ready – potential and possibility are just around the corner!
December 7, 2011
BRCA 2 Blog – Post 1
In my last post, I talked about my struggles with the transition from patient to survivor. The one thing I failed to mention (because I felt that it warranted its own post) was the biggest reveal of the summer – I tested positive for the BRCA 2 gene mutation.
For those of you who may not be familiar with it, the BRCA2 gene is part of everyone’s DNA makeup, and provides protection against tumor development. If someone inherently has a mutation, this means one of the two copies of this gene has been altered. The result is an increased risk for certain types of cancers – primarily breast and ovarian.
For me, the diagnosis was a relief of sorts. I felt that it gave me some explanation as to why I have had two late stage primary cancers in the last two years. Does it mean that it caused my melanoma? Not definitively. As the genetic expert, Dr. Judy Garber, explained to me, what most likely happened is that the mutation made me more susceptible to tumors as a result of overexposure to the sun. So basically, both were factors.
This also means that I have a very high risk percentage of developing breast cancer. After what I just went through, there is NO WAY I ever want to have to have chemo again, so I am electing to have a prophylactic bilateral mastectomy (proactive both boob removal). This does not mean that I can never develop breast cancer, but it significantly reduces my risk.
This decision is not for everyone. There have been lots of articles recently about this very topic, with most saying that it is a drastic measure that does not need to be taken. Personally, I disagree. My feeling is that anything I can do to reduce my risk is worth it. Plus, the idea of needle biopsies, breast MRIs and additional CT scans every few months seems unnecessarily unpleasant.
Believe it or not, I am actually excited for the surgery. I can’t wait to get rid of them! It will be such a relief, and to top it off, I get some new boobies! Sweet! I can’t wait to parade them around the pool next summer (covered with lots of lotion and protective layers of course).
My surgery date is January 23rd. I am having it done in Boston, at the Dana Farber Cancer Institute/Brigham and Women’s Hospital. We head up there next week for consults and appointments. While we are there, I will also have a follow-up from my ovarian summer surgery AND meet with the melanoma docs too. I think it makes sense logistically to move everything under one roof to make sharing information easier.
I have to add here that the genetics team at DFCI is amazing. My counselor, Shelley, is awesome. She is super smart and incredibly helpful. As I mentioned above, I also had the privilege of meeting Dr. Judy Garber, the renowned genetics expert. Her background is as a breast oncologist, so she is very familiar with the risks and rewards associated with this type of surgery. She is a leader in this field and I feel very lucky to have had the benefit of her expertise.
Thus begins another new chapter in my cancer adventure. It seems to be a winding path with pitfalls and pinnacles around each corner. A true journey without any concern about the destination. Where is it going to take me now?
November 19, 2011
Hey MG peeps! I know, it has been AWHILE. First and foremost, I want to thank all of you for the incredible support you gave me over the summer. It really meant a lot to me and I truly appreciate it!
The last couple of months have been a whirlwind. I finished treatment, moved back to Cincinnati, celebrated my 40th birthday, and finally just returned from a week-long visit with my sister and her family in Atlanta. It has been super busy and I can’t believe Thanksgiving is next week. Yikes.
So life is good, right? Chemo is over. Clean bill of health. Traveling and visiting with friends and family recently has been fun. Lots of celebrating. I should be jumping for joy. Mostly, but not quite. So what is the problem?
Not sure. During the summer all I could think of was, I can’t wait until this is over. Then normal life will resume again. I lived in segments – only four more treatments, only two more treatments, only one more. It still kind of feels like a dream, especially now that I am back in Cincinnati (wait – just looked at my scars – not a dream).
I think it was hard to shake the patient mentality. Family and friends were so amazingly helpful that I didn’t have to concern myself with anything. I was pampered and fawned over. That was easy to get used to. Who wouldn’t like being taken care of all of the time? Everyone is so nice, caring and concerned. It is like being wrapped up in a big cozy blanket while wearing those super soft socks (thanks, J.J.!), and being spoon fed your favorite ice cream. AHHHH.
But then suddenly one day someone is tearing it off of you, saying, OK, you are all done now. Bye-bye. No more coddling and warm blanket. Get back to real life.
Real life??? Already? I thought I wanted that all along, and then when it happened I was not ready for it. I certainly did not like being booted out of my comfortable nest. I wasn’t ready to fly yet. What happened to all of the special treatment? Can’t you see that I am still bald and have no eyebrows? What am I supposed to be doing?
Transition is tough. No one prepares you for it. Especially the doctors. During treatment they watch you like a hawk. They know you by name. You can’t make a move without informing them first. Once you are finished with everything, they move on quickly. They have other patients of course, but still it is kind of hard to get over. You go from being newly married to just hanging out as friends every few months. Where’s the love?
As for blogging? Forget about it. It didn’t help that serious chemo brain set in and my synapses completely diffused. I couldn’t get words to form in my head, never mind flow out of my fingers. I was frustrated. I felt like I lost my mojo.
That is when I remembered a magnet that I had on my fridge this summer. It says ‘“Put On Your Big Girl Panties And Get Over It.” I love that magnet. No wonder I was a mess! I had left it in NH (duh) and needed that daily reminder. Nobody likes a whiner. Especially me. And here I was floundering around like a fish out of water.
No more of that! I am happy to report that my brain is firing on most of its cylinders this week and I am getting back into the groove (cue Madonna here). I feel energetic, happy, and more focused. It isn’t perfect yet, but definitely heading in that direction. Writing feels good, but is taking more time than it used to (this blog took me two days to complete when I can normally bang in out in 30 minutes). Ugh.
So onward and upward! I have lots of ideas and stuff in my head that will hopefully translate to tangible results soon. For those who sent emails to me through my website, I am working through them and plan to respond to each and every one very soon. Thanks for your patience! Please stay tuned for timelier blog posts and other MG updates!
Hope you and your families have a wonderful Thanksgiving!