August 24, 2011
My six-inch abdominal incision is healing nicely. So is the one under my right arm. The pain has been minimal and very manageable, which is nice. However, I have another issue that is much more bothersome. It is called sweating. Otherwise known as hot flashes. Major ones. Now that my uterus has been removed, I have been introduced to menopause overnight. Fun stuff. It is especially nice when I take the time to paint on my eyebrows (they are almost non-existent at this point), and then feel it coming on. Within a minute I have sweat beads on my face and all over my body. I can even feel it running down the back of my legs. So gross. I definitely need one of those little motorized fans. Or maybe a bunch of them. Kind of like reading glasses – one in every purse, car, and corner of the house.
I have asked my docs about HRT but do not know if I will be a candidate yet. I should find out later this week during my post-op appointment. Something about if my cell receptors are going to want to stimulate tumor growth or not. Definitely don’t want that. If I am not able to take it, then I am going to start researching natural remedies. Black cohosh and such. Does anyone have any experience with this that you would be willing to share? I would appreciate any insights you may have!
Since hubby had to leave the day after surgery, I have been blessed with wonderful visits from caring family and friends over the past two weeks. My mom, dad, stepmother, sister, best friend, sister-in-law, aunt and uncle have all been here to take care of me during the healing process. It has been really nice to spend time with everyone and I appreciate their willingness to hang with a hairless person who takes lots of naps and ten minutes to cross the street. Love you all!
One cruel irony – my hair is starting to grow back. I have peach fuzz all over my head. I even had to shave my legs today! Poor follicles – they don’t know what is coming and will be totally confused when they are hit with the chemo tomorrow. I am so curious to see what it looks like when it finally comes in. Will it be the same basic boring brown or will it be crazy, kinky curly blonde, black or even gray? That would be kind of fun. As long as I am reinventing myself, might as well go with a totally new ‘do, right? My sis-in-law just commented that maybe I will even want to keep it short this time around. Short (or bald) is certainly easier than maintaining 10-12 inches of thick, wavy hair. A new look for a new decade? We shall see.
Heading to the hospital early tomorrow AM for round number five. Second to last treatment – yay! Hope everyone has a great rest of the week and weekend. See you on the other side!
August 15, 2011
Narcotics are not my friend. In general this is probably good practice (the chief of police would certainly approve), however, a certain amount are usually needed after major surgery in order to manage pain. This proved to be very challenging last week when I awoke from surgery with a six inch incision, yet the drugs they were giving me were hindering my ability to do the things necessary in order to be discharged from the hospital. Let’s just say that I was a weeping pile of mush. What to do? Continue taking the required pain medication, or wean off of it so that I could get rid of a major case of med-head?
The docs (with strong encouragement from hubby) decided to take me off of the Dilaudid and give me “Super Advil” instead. Thank goodness. Within a day I was drinking fluids, taking short walks down the hall, and munching on dry toast. It was like the fog had been lifted from my brain. The next morning my IV was removed, and I was discharged with honors. I was still very sore, but so thrilled that I would now be able to sleep through the night without being awakened every four hours for vitals, heparin shots, and a gaggle of doctors who spontaneously poked and prodded me at will.
What’s the lesson here? I am not saying that pain meds are bad for everyone – just for me. I have taken them in the past and kind of knew this already, but the recent reality slap was a harsh reminder. It amazes me that some people develop an addiction to these things. I cannot imagine becoming dependent on something that makes me feel like I want to throw up all of the time. I am not sure what I will do for future surgeries, but at least now I have a mental souvenir of what not to do.
The end result was certainly worth all of the above aggravation. NO MORE CANCER! My surgeon feels very optimistic that they got it all. The amount of disease had diminished due to the chemo, which made the surgery less invasive too (makes my other organs very happy). I may have a lovely scar from stem to stern and no reproductive capabilities, but I will take that over Tampax any day!
Going forward, I still have two more rounds of chemo in order to zap any minute cells that still may be floating around. The next one is scheduled for the end of August. So I have a couple of weeks to hang out and recover before then (thinking of catching up on my movie and reading list for the summer). The only major restrictions I have over the next six to eight weeks are no heavy lifting, driving, or nookie. The first two I can do without, but the last will certainly be missed for a while!
Hope everyone has a great week!
August 1, 2011
OMG! Another gorgeous morning on the seacoast of New Hampshire. Sunny skies, beautiful ocean breezes, zero humidity. All that, plus a cup of Dunkin’ coffee in hand – what more could a girl ask for?
I can see why the early settlers chose this location for their new home. Did you know that Portsmouth was founded in 1623? That is only three years after the Pilgrims at Plymouth. As a novice history buff, I have been doing lots of reading on this stuff lately and it fascinates me. Some people like math and science, but MG LOVES history. More specifically, colonial history. Our rental house is smack dab in the middle of it all, and I trying to take full advantage of it. Instead of the sun, I am soaking up pre and post Revolutionary dates and facts this summer. Did you know that Portsmouth had its own mini-tea party? Or that Washington stayed here shortly after he was elected President? I am thinking of getting a powdered wig and wearing it while I tour the historic homes. What do you think? It will be no less obvious than my bald head. Ha.
As far as health and cancer goes, I have been feeling great since recovering from chemo number four a couple of weeks ago. Surgery is scheduled for August 8, so I am on hiatus until then. Sweet! One more week to go. I have been using this time to connect with local family and old friends. I have made some great new friends too! Not to mention eating lots of lobster, fried clams, and ice cream (no counting calories for me this summer!). It has been just what the doctor ordered.
Speaking of docs, I am headed down to Beantown tomorrow for a few pre-op appointments. I have to meet with them for blood work, anesthesia prep, surgery details, etc. After the operation, I will have a recovery period, and then chemo number five on August 25. Chemo number six should be in mid-September, and then hopefully, we will be done. I can’t believe how quickly time is passing and that the end is in sight. Where did the summer go? I am conflicted between wanting the process to be over, but also wanting to prolong my time here. Don’t want to wish it away. Need to remind myself to stop and smell the salty air.
The best news is that hubby comes back into town tomorrow! I have missed him and can’t wait to see him. After the hospital appointments, we are headed to Fenway to catch a Sox game and spend the night in the city. Fun! I am going to call ahead to the Cask and Flagon so they can have a frosty Harpoon Summer waiting on the bar for me!
Hope everyone has a great week! Enjoy!
July 21, 2011
Today is Day 8 and I am feeling great! (sorry – couldn’t resist the cheesy rhyme). I love waking up without that draggy-druggy feeling. It is kind of like magic when it happens. It makes the memories of the last week of hell sort of melt away. I want to wrap my arms around this day and give it a big, giant hug! I feel as content as a person who has slept well, and is drinking her morning coffee with a gentle breeze coming through the window next to her. Oh, wait, that’s me.
It’s a good morning to write and take advantage of the laptop while hubby is on a conference call. He is a laptop hog. Even though he has his iPad, he still “needs” my laptop to work while he is here. I am happy to share, but all day long? Seriously? I will have to come up with ways of distracting him in order to get it back later – hmmmm……
OK – time for some quick reflection. Now that I am more than halfway through this process, I have been starting to think about What’s Next. When treatments and surgeries are said and done, what is next for me? I know that I want to dedicate myself to cancer awareness, but in what capacity? Just MG, or MG and Ovarian? Or something else entirely? Do I want to create another organization or support an already worthy one? Do I volunteer? Write? Speak? All of the above???
I know I don’t need to make these decisions now, but they are circulating in my head more and more. I guess just mulling them over is OK. I do always come back to the same thing however – Making A Difference. It is that simple. I want to make a difference for cancer. How exactly to go about doing that though is lost to me at the moment. Chemo brain.
So, for now, I just look forward to the immediate good things on the horizon. And today that would be an upcoming sisters’ weekend! My wonderful sis is flying up from Hotlanta to spend some quality girl time with me, and we will be joined by our younger (we don’t hold that against her) and totally fab local sis for some shopping, dining, drinking, and generally painting the town red time. Woo hoo – can’t wait!
Today’s post is not all that thought-provoking, but more about just feeling good and going with the flow. Relax. Enjoy the sticky hot summer. Eat an ice cream. Or two. I had a twisty cone last week and it melted all down my hand while I frantically tried to lick it under control. The ice cream won. Good stuff.
Oops – hubby is off his call. Bye for now!
July 6, 2011
Treatment number three has come and gone. Husband has come and gone. Friends have come and gone. I am sitting here alone thinking about the last few weeks. I am feeling a bit ambivalent and not sure what to write about. What do I want to share? How best to articulate my thoughts and feelings?
Let’s start with the easy stuff. One thing is for sure – I love it here. I love, love, love being back in New England. It feels so good. I love being able to hear the boat engines on the harbor, and feeling the cool breeze coming in through the screen door. I love the smell of the salty air. I love taking Gracie for long walks along the historic streets. I love hearing the familiar accents (no R’s please!). I love that my family and friends are so close. It makes the recovery days that much easier.
Also easy – I love my husband. He is simply the best. Not sure what I did to deserve him, but I hope he knows how much I appreciate and love him. I miss him so much when he is gone too.
Now for the challenges.
Chemo. Now that I know what to expect, it makes it both easier and harder. Day 4 has turned out to be the worst, but then by Day 7, I start to turn the corner. So knowing that is coming makes it harder because I know how bad I am going to feel. Better though, because I know when I will start to feel better. A trade-off.
No hair. Wearing scarves and hats in 90 degree weather is not all that fun. Going bald in 90 degree weather is not a smart option since my scalp has never seen the light of day, yet it is cooler (why, oh why, could I not have had cancer in the winter?). So what is a girl to do? Well, this girl has been sweating her ass off during the day, but staying covered up. At night, she is embracing her baldness and wearing it proudly. OK, that is not completely true. Sometimes wearing it proudly then other times feeling like a freak. Depends on the day. I know I have said before that I will not allow the length of my hair to define me, yet sometimes it is hard to feel pretty and sexy with no hair.
MG. Admittedly, MG has been a struggle for me lately. I am not sure why. It was so simple before, so clear. I knew what I wanted to do and I did it. Easy breezy. Now it is hard for me to focus on. I think it is because of this manipulative ovarian cancer who is trying to steal the limelight. Bitchy cancer wanting all of the attention! I can’t wait until she is gone.
MAD For Cancer. This is my new brainchild, born out of the need to somehow connect to the ovarian cancer, and still embrace the melanoma. I want to Make A Difference, but not sure yet what that looks like. I created a FB page, but have no pics yet, and no concrete ideas. The premise is for people to share what they are doing, since so many people are doing so much. I hope that it will evolve with me during this journey.
That’s it for Post 4. I have a scan on Friday, then meet with the surgeon, then hopefully surgery. Will post again as soon as I can!
Oops – almost forgot another easy. All of the support, prayers, and posts that thoughtful and caring people have sent to me. It is remarkable and always helps me get back to a good place. Thank you!
Sorry for the delay in updates! It has been a hectic couple of weeks and I haven’t been able to blog as much as I would like, plus I can’t read or write without nausea until Day 8 or so. Here is the latest and greatest…..
As some of you know, we decided to move to the Boston area for the summer so I could have all of my treatments and surgery at the Dana-Farber Cancer Institute. We decided this after we got home from chemo #1. The travel took a lot out of me (getting on a plane after chemo treatment is as much fun as… well, a chemo treatment), so we thought it would be easier if I were able to stay in New England for the next few months. It was a bit of a scramble, but we managed to get it all organized in record time. Then we packed up the car and the dog (who has more shoes than me), and drove east. Boston or Bust, baby!
En route, we got the call that our summer rental arrangement had fallen through at the last minute. OMG. The cute little historical house I had my heart set on was no longer available. It was due to extreme extenuating circumstances, which we understood, but I was crushed. Totally. I love colonial history and was so excited to live in a house that had been built around the time of Paul Revere. Plus, chemo #2 was right around the corner and I needed a comfy bed to lie in for the next week or so. Let’s just say that our arrival was not as joyous as I had hoped, and definitely amped up our stress levels a notch or two.
But positive attitudes and persistence prevailed! As I noted in my last blog post – Everything Happens for a Reason. Not only did we find an even better place to live, but we stayed with our amazing friends while we finalized the details. Time spent with great people + lobster + wine = soul replenishing yumminess!
The only issue with our new rental is that we couldn’t move in immediately. So, some more amazing people – my dad and his wife – welcomed us in. We have been with them for a couple of weeks and it has been so comforting. The perfect amount of love and support. Even though the circumstances could have been better, this time spent with them has been priceless and I will cherish it. They have provided me with the opportunity to completely focus on getting through treatment and will not allow me to lift a finger. Cooking meals every night, doing laundry, walking the dog (wait – am I sure I want to move out?). An enormous hug and thank you to them – love you!
Staying with my dad has also been a homecoming of sorts. I moved from Boston to Cincinnati in 2000, and we visit often, but it is not quite the same as living here. Being a New Englander is in my blood (just call me Yankee Girl). I love my life with hubby in Cincinnati, but I can’t tell you how much I am enjoying being back and reconnecting with my family and oldest friends. It is so reassuring and familiar – like wrapping yourself in a warm, soft blanket. Mmmmm…cozy.
So what are my favorite things about Boston? I thought you would never ask! First and foremost, there is a Dunkin’ Donuts on every corner, which is wicked awesome. I love Dunkin’ coffee and get it at every opportunity (plus the Munchkins rock). I love driving like a maniac, and swearing like a sailor at all of the other crazy drivers. I love reading the Boston Globe. I love that the Red Sox are on the local channel. I love dialing 617. I love being near the ocean and being able to take in a deep breath of salty air. I love taking walks with my dad and the dog. I love calling my friend of 20 years and saying, hey, want to meet for coffee or lunch? I love that one of my sisters now lives in the same state. I love that at our new place we can walk one block to buy lobsters that were pulled out of the water 20 minutes before. I love the fact that I feel most like myself when I am here. It is all super good.
The one downside is that my hubby is not able to be with me all of the time. He is going to commute to and from Cincinnati. He is here with me during treatments and then will fly home on Day 7. He is working hard to bring home the bacon, while taking care of me at the same time. Incredible. He is the MAN. I miss him, adore him and am so blessed and lucky to have him in my life. Thank you, sweetheart!
Today is Day 12 and I am feeling almost 100%. Yea! Packing again and getting ready for the move on Wednesday. I have nine more days to enjoy before treatment #3, and plan to squeeze every drop of goodness out of each of them. We are renting in a quaint, coastal town one hour north of Boston that was founded in 1630. It has beautiful parks, great restaurants, and more American history than even John Adams could stand. Sweet! Portsmouth, NH here we come!
MG has had a crazy couple of months and is finally feeling back to normal today. Wow – what a ride! Just sitting here and trying to get my head around what has happened recently. So many changes in such a short period of time. Due to the situation and circumstances, I feel like a whole different person lately (and I certainly look like one in the mirror!). Each step in this process has been challenging but has also offered worthy life lessons. So, where did this new person come from and what has she learned?
First, the diagnosis. That took a while. I struggled a lot during this time, knowing that I had cancer again, but not knowing what it was. The waiting was the hardest part. Waiting for appointments and then test results. Patience has never been my strong suit. I had to remind myself again and again that the doctors needed time to assess the situation so we would know how to appropriately proceed. It was hard to do, and I am very relieved that we finally know and are actively working on it now.
Lesson #1 – Patience is a virtue, and I need lots more practice.
Second, the first chemo treatment. Ick, uck, yuck. That was quite the experience. Nothing like the interferon that I took for melanoma. It is better and worse. Better because it eventually wears off and I get to feel like I do today. Worse because it was truly awful. You feel like a Mack truck ran over you and then backed up just for the fun of it. Those of you who have experienced chemo can relate. You have absolutely no control over your body and how you feel. It can be very frustrating.
As I lay in my bed most of last week I kept thinking to myself – this too shall pass. Not sure where that came from, but it helped get me through the worst of it. The fatigue, nausea, dizziness, bone pain, insomnia, and 20 pills a day would eventually come to end at some point. Knowing that gave me a sense of strength and peace and allowed me to rest a bit easier.
Lesson #2 – Appreciate the good days and relinquish control on the bad. It will get better.
Third, the hair. As you can see from the pics, I had pretty long hair. It took me years to grow it to that length and I loved it. I loved the fact that I could go days without washing it and all I had to do was flat iron it and it still looked good. I loved being able to wake up in the morning and pull it back into a ponytail or braid. I loved how my husband would tug on it affectionately. It made me feel sexy and confident.
However, as soon as they told me that it was going to fall out before my next treatment, I wanted it off. All of it. I was paranoid that it would start coming out in chunks and did not want to wait for that to happen. Plus, I wanted it to be as short as possible so there wouldn’t be as much to fall out. So, as soon as I felt like I could get out of bed, I called Kimmie, my wonderful friend and stylist, and off we went to the salon.
It wasn’t as bad as I thought. Once she cut off the braid, I was over my anxiety. It was actually kind of freeing in a way. All of that heaviness gone, and no more worrying about rain or humidity! Plus, think of all of the money I am going to save in cuts, colors, and blow-dries. I still don’t recognize myself in the mirror, but I getting used to it, and at least now have a pretty good idea of what I am going to look like bald.
Lesson #3 – My hair does not define me or how I feel about myself.
Finally, I have been amazed and humbled by the kindness and generosity of my husband, family, friends, doctors, nurses, neighbors, and even casual acquaintances. My feelings are hard to put into words. I have had cards, flowers, hugs, phone calls, thoughtful gifts, prayers, visits, posts…..the list goes on and I find it difficult to express my gratitude. I am so incredibly blessed and lucky to have all of these people in my life.
Lesson #4 – Never take these relationships for granted and always work at honoring them.
I can feel all of these experiences starting to transform me into a new person. I am still figuring her out, but I hope she will be strong and brave in the months to come. I do know though that the new me is no longer going to allow the length of her hair (or any for that matter) to determine who she is and how she feels about herself. The new me will be a more patient person who isn’t rushing through life and trying to control it every little step of the way. The new me will appreciate every good day that she has. The new me is going to spend every moment possible with her family and friends and make sure they know how much she loves and appreciates them. At the risk of using too many proverbs in one post, everything happens for a reason, so I am going to use this new cancer as an opportunity to hopefully become a new and better me.
After a month of doctor appointments, tests, and an exploratory surgery, the final verdict is in. MG has stage four ovarian cancer (I am calling it The Big O). No melanoma or breast was found in the tissues they extracted during the surgery. That is the silver lining. As we all know, stage four melanoma is very difficult to treat, while ovarian has many tried and true treatments. All of the docs are very optimistic that we can beat this and be cancer free in 6-7 months. Fingers crossed!
Today (May 11) is my first chemo treatment at the Dana Farber Cancer Institute in Boston, MA. Why come here you might ask? Well, allow me to explain that a bit. First of all, I absolutely adore and respect my oncologist in Cincinnati. He is a melanoma god, and more importantly, a wonderful person. He has treated me so well over the past two years and I can’t thank him enough. However, we decided to get a second opinion (with his blessing), and chose the DFCI for a few reasons. First, it is one of the best cancer institutes in the country. Second, it has its own gynecological floor, with an amazing line-up of docs and staff. Third, it is in my absolute favorite city – Boston. Fourth, and certainly not least, I have a lot of wonderful family and friends here. So, it wasn’t that tough of a decision after all!
Now that we have officially started this brand new journey, of course my thoughts are how best to continue working on MG while receiving treatment for ovarian cancer. I worked so hard on the campaign for this summer and I don’t want it to be a bust, so I am hoping that I can continue promoting Respect the Rays over the next few months. I also want to be true to this new cancer too, so need to think more about that, but I have some ideas already. First, I am going to be starting this new blog post called The Big O. What do you think? Kind of catchy, no? Plus, it is fun and I can do a lot with it. I will post it on my MelanomaGirl site (www.melanomagirl.com), plus the MG FB page, as well as the new MAD For Cancer FB page. This way I can cover all bases.
I already have ideas for T-shirts for The Big O and Mad For Cancer. Going to get my sister dream team (Jill and Jenny) together when I get home this weekend and see what we can come up with for designs. I am thinking of an O-MG! T that stands for Ovarian/Melanoma Girl, as well as a teal striped umbrella with an O for the shadow and offer it as a limited edition T. I would love anyone else’s ideas too – please feel free to share! The new MG Ts are ready to go and posted on the site, but still have to add the updated PayPal and order some inventory. Thanks for your patience!
Finally, and most importantly, I can’t begin to thank you all for the incredible outpouring of support you have given me over the past few weeks. I feel truly touched and honored. I read all of your posts and emails, and try to respond to all, but apologize if I can’t get to it right away. I have not been online as much as I usually am, and am hoping to get back to everyday here very soon. Again, thank you so much – MG fans are the best and I am lucky to have you all!
How many people have been diagnosed with three separate cancers in two years? As of yesterday, I guess I can add myself to that statistic. Melanoma, ovarian and breast. The cancer trinity!
CRAZY! I actually looked at my husband and laughed after the doc gave us the diagnosis. WHAT? Breast and ovarian simultaneously? Seriously? After being cancer free from melanoma for two years, this was the last thing I had expected. More melanoma – yes. Two brand new cancers that had nothing to do with melanoma – definitely not.
How does this happen to someone who has no family history of any of these diseases, and is young (relatively) and healthy? We aren’t sure yet. Genetic testing is definitely down the road. The silver lining here is that it is not melanoma, and that it is not in any of my major organs (lungs, liver, brain, etc). These diseases are curable. That is certainly something to be thankful for.
The odd thing is that I am not angry. I am honestly not. I have had my sad moments, but I am looking at this as a bump in the road (albeit a very bumpy road) more than anything else. The thing I am bummed most about is not being able to promote my Respect the Rays campaign in May as I wanted to. The fundraiser and talk will most likely have to be canceled, but maybe I can move it to later in the month or later this summer. We shall see how things play out.
I love that saying, “when life hands you lemons, make lemonade.” I am going to take these lemons to find a way to bridge the gap between melanoma, breast and ovarian cancers. There is possibility and opportunity here. Let’s take this cancer hat-trick and make something positive out of it. That will be my focus over the next few months. I am hopeful that having three types of cancer will truly be a charm at the end of this journey.
Have you ever just wanted to get in the car and drive? Maybe even with no specific destination in mind – just wherever the road takes you? I have that itch. Not sure why, but it is there. Of course, my version includes the hubby and dog, clean hotels to sleep in every night, and some good bottles of dry Rose. Not exactly roughing it, but that’s OK. Everyone has their own vision.
More specifically, my vision is me jumping into a shiny MG-branded VW bus (loving the return of the 70’s) and taking the MG “Respect the Rays™” message across the country.
As a stage three melanoma survivor, I have a passion for positively promoting awareness for this deadly disease. It is a killer of women and men, young and old, of all races and skin types. It does not discriminate. It especially prefers those individuals who have abused the sun and/or tanning beds at some point in their life. It is one of the fastest growing cancers in the U.S. and worldwide. It can develop anywhere on the body. It kills one person every hour.
So now that I have gotten your attention with the scary statistics, what can we do to help prevent occurrences? First and foremost, we can increase awareness through prevention education. Recently, melanoma has been preying more frequently on a younger age demographic. The exact cause has not yet been determined, but all fingers are pointed in the direction of overexposure to the sun and tanning beds. Now, despite what you may have heard, you don’t have to be a beach bum or a tanaholic to get melanoma. What can you can be is an athlete who spends lots of time outdoors (tennis, track, volleyball, golf, etc.), or someone whose occupation has them in the sun quite a bit for extended periods of time (lifeguard, roofer, landscaper). That and not wearing the appropriate amount of sunscreen can put you at risk.
Secondly, be sure to get your skin checked at least once a year by a dermatologist. This is incredibly important for properly diagnosing melanoma. The survival rates increase dramatically if it is detected in the early stages. Plus, a derm can spot something serious a mile away, where you might have trouble determining between what is questionable and what is normal.
So, back to my road trip. How fun would it be to take the MG message on the road? I can totally picture myself behind the gynormous wheel, cool wind in my hair (no a/c), and The Eagles on the eight-track (I think my hubby still has a stash of them I could borrow). It would be so old-school and freedom rock-ish. Love it!
So who wants to squeeze in with us and join the MG Movement? It will be a hot, possibly sweaty, bumpy drive, but I can promise you show tune sing-alongs, lots of Dunkin´ Donut stops, and an enormous sense of gratification and accomplishment. Applicants must have deodorant, a good singing voice, and enjoy lots of slobbery Boxer kisses. Are you in?
Now I just need a VW bus. Anyone have one to donate to a worthy organization?