As Mike laid in the hospital bed in pre-op, we laughed at each other and decided we are much more comfortable in our usual roles. I couldn't help but giggle as I watched my normally calm and collected husband become anxious and jittery while I became the quiet (yet nervous) caregiver waiting in the wings. Thankfully, Mike's surgery went just as his surgeon had hoped it would and he is feeling better each day. He started to go a little nuts sitting around the house after a few days, so he happily returned to work on Monday. There is still a ways to go as far as wound healing is concerned, but we are glad this little speed bump is behind us. Thank you so much for your thoughts and prayers - we truly appreciated it so much!
Although this was the first week in a very long time that I wasn't at Karmanos, I still had a couple other doc appointments to go to. On Monday I met with my plastic surgeon Dr. M for my follow up now that radiation is over. He is very pleased with how well my skin looks. You would never believe how quickly it healed! The bright red, perfect square outline that adorned my chest two weeks ago has almost completely disappeared. I honestly contribute this to religiously applying Aquaphor all over my chest three times each day, in conjunction with a very healthy diet. Dr. M said everything looks great and we can proceed with our plan to swap out the expanders and put in the implants. That surgery is now scheduled for May 4 and I am very much looking forward to it!
Aside from doc appointments, another big appointment I had this week was to get my hair did! ;) For the first time since shaving my hair 10 months ago, I was ready! It has been growing like a weed since the late summer and I was fearful I would wake up any day now with a mullet so I knew something must be done, stat! I went to a new hairstylist that does a lot of short 'dos and she came up with a great plan for me. It's a little tricky to try to keep a cute short style since my ultimate goal is to grow it back out. She just trimmed it up a bit and blew out the curls a little so that I ended up with this wavy faux-hawk...what do you think?!
While I was at the salon, I experienced something that I knew was bound to happen but I just wasn't sure when. All of these many months since my diagnosis, I have lived in somewhat of a cocoon. Nearly everyone I encountered knew my story, or could tell I was bald, or saw me at Karmanos where every patient is obviously dealing with cancer. It has always made me feel protected and secure. But I knew that the time was swiftly approaching when I would enter back into the real world and have to try to be "normal" again - not Meghan, the cancer patient. I had a feeling it would be a difficult transition.
The hairdresser asked, "So, what's going on with your hair? What do you want to do today?" I proceed to tell her and her assistant that I lost my hair from chemo and this is my first haircut since it started growing back at the end of the summer. I am proud of being a cancer survivor and I have no shame sharing this with them. Well, her next set of questions go something like this...
Hairdresser: So, what kind of cancer 'did' you 'have'?
Me: Breast cancer
Hairdresser: Did you have surgery too?
Me: Yep, chemo followed by surgery and then radiation
Hairdresser: Wow, so now that all of that is done, you are cancer free and it's gone?!
Me: Ugh..........um, well, not exactly.......(start sweating and feeling a little awkward)
This is where I think, "crap, I knew this was going to happen eventually". How do you try to explain to someone that you didn't 'have' cancer. That you still do HAVE cancer and that you always will. How do you try to make other people understand without freaking them out or having to spend an eternity sharing your life story with them?
Me: Well, actually I have stage IV breast cancer which means it has spread past my breast and lymph nodes to other areas of my body, like my spine. There is no cure for it.
Hairdresser: (looks dumbfounded, mouth agape) Oh really? (It's obvious she doesn't know what to say next) Are you going to lose your hair again?
***It's at about this time that I notice that I have also captured the attention of the clients and hairdressers on either side of my chair***
Me: Well, there is a chance I will have to have chemo again. I am in remission right now and hope to stay that way. As long as my cancer behaves and doesn't start causing problems again, I will be okay.
She was a total sweetheart and was very kind and compassionate. But none the less, it was a difficult moment for me. Sure, I could've just said - "yep, I am in remission" and left it like that. It would have led her to believe I am cancer free and have put that chapter behind me like many survivors are able to do. That would have been the easier route. That would have made her and the others listening a lot more comfortable. It would have opened the door for them to say, "Yay! Congratulations! That is great that you are a survivor!" But I don't get those kind of cheers. Many people have no clue what to say or how to react. And I don't blame them for that in the slightest. But, that does not mean I mislead them into thinking I am cancer-free. So many of us with metastatic cancer already feel like we are overlooked, or ignored - that our stories aren't shared - that our triumphs aren't celebrated because we aren't able to be that perfect success story - the one that is the happy ending that everyone wants to hear.
I refuse to help perpetuate that problem. So, although it made me a little uncomfortable, and although it sparked a few blank stares my way, and even if it incited a hot flash - I will continue to share my story - the real one, the uncensored one. I am sorry if it makes someone feel uncomfortable but I would be doing a huge disservice to all of us that battle chronic illnesses if I didn't speak honestly about what I am dealing with. Rather than being part of the problem, I am choosing to be part of the solution. I see it as a privilege to educate as many people as I can and to let them know that there are thousands of people out there like me. We are still survivors! We are surviving this disease each and every hour, each and every day - and we need you to help support us and celebrate our victories with us, no matter how small they may seem.
So although this transition back into the "real world" hasn't fully taken place, certain aspects of it have begun. I know once I eventually return to work and interact with new patients again, somehow my cancer may come up. Or when I meet someone new in my personal life and they ask if we are going to have children, this may come up. I don't plan on rambling to every stranger I meet at the grocery store about my disease and what the word metastatic means, but when the situation presents itself and I am faced with that choice to either gloss over the details of my diagnosis or share the truth behind it, I will always choose the latter. And I believe we will all be better for it.
Well, it's now 2:20am and my alarm is set to go off at 6:20am so I better hit the hay. Will I be tired in the morning? Sure thing. But will I really care? No way. Want to know why? Because I am headed to West Palm Beach, Florida to visit this little munchin and help celebrate his 1st birthday!!!
That's right...I am escaping the cold and headed to sunny Florida for a nice long weekend. I cannot wait to see Brinley, Andy and little Andrew! I haven't seen them since a super quick visit while we were in Fort Lauderdale for Labor Day. It's going to be the perfect "end of radiation celebration" gift to myself and can't wait to see my favorite Floridian friends. I hope you all have a wonderful weekend!
ps - If you could say an extra prayer for my friend, Pam as she undergoes a double mastectomy on Monday. Pam, I am sure it will go just fine and you will be back up on your feet before you know it! Hang in there!
There always seems to be so much on my mind when I sit down to prepare my next update. I can assure you that there is never a shortage of topics or things I want to share. Sometimes the hard part is narrowing down all the things that are running through my mind to figure out exactly what I want to focus my energy on. I guess that is what I do everyday - I choose what to focus my energy on that day and try to tune out the rest. So when people say, "you are so positive" or "you have such a great attitude", I really do appreciate it but it's simply about making the conscious choice to do your best to block out the negative, focus on the positive, and enjoy each moment.
But, I also feel that it's important to say that it's not all positive, happy thoughts, 100% of the time. There is a part of me that is sad - every day. There is a part of me that is grieving - every day. There is a part of me that is scared - every day. And there is a part of me that feels lost - each and every single day. But, I go to bed each night watching Mike as he falls asleep, quietly reaching out to hold his hand without waking him, and thanking God for another wonderful day with my husband...because that is all I ever truly want.
My hair began to slowly grow back about a month or so ago (while still on Taxol) and within the last couple of weeks it has really started to get longer and thicker. So, last week when we went to the cider mill, I decided to be brave and venture out without my scarf. It might not sound like a very big deal to most, but until you are forced to lose your hair, you have no idea what it feels like to go through these types of transitions. Losing my hair wasn't as devastating as it is to many people, but I became very used to my wig and scarves and aside from when I was inside my house, I had something on my head 24/7. I remember stepping out onto my porch once to get the mail and realized that I didn't have a scarf on and all of a sudden I stood paralyzed, looking around to see if any neighbors saw me. I felt like I was just caught naked by the entire community! So now that my hair is growing back, I have found that it was hard to part with the security blanket that my scarves and wig had become.
It feels like another crossroads - the start of a new path. It's a little hard for me to put into words but with my hair growing back it sometimes feels like people will think that means I am all better, or the cancer is gone because chemo is over, and that I can just go ahead and return to my "normal" life. And unfortunately, none of those things are true. Yes, I will now have hair and I won't be as readily identified as a cancer patient without my scarves -but it doesn't mean I am okay. I am reminded of this cancer inside me each and every day when my back aches and throbs, when I am fatigued after lunch with a friend, and when I think of the long road ahead. I am a little nervous that because people say I look good and I will now look even less like a patient, that I will be expected to just put the pieces back together and move on - but please realize this is far from over and I am still fighting.
I felt very self-conscious at the cider mill last Sunday, and not to mention cold from the breeze on my head that I hadn't felt in a long time! :) Although my wonderful husband reassured me a million times that I looked beautiful, and that he loved my new "edgy" look, I didn't feel like myself anymore without my scarves. But, I realized that I needed to step outside of my comfort zone once again and take this step forward. I haven't put a scarf back on since. Each day last week I ventured out to different places, all while sporting my new pixie cut. I have become a little more confident and feel a little bit more myself each day - although I am still caught off guard when I catch a glimpse of myself in a mirror or store window. I did wear my wig to our friend Matt's wedding last Saturday because I just didn't feel right without it once I was all dressed up - but that might be the last time I wear it for long while...maybe ever!
So what do ya think?!.....
And if you are wondering...yes, it is starting to curl in the back, and yes, it is starting to look more and more red each day. I have heard all sorts of stories of women having their hair come back in all kinds of new ways after chemo but something tells me that this little ginger is going to get her red curls back...and I never thought I would say it, but I really hope I do. Through this experience, I have come to really appreciate what I had and the uniqueness that was my hair - getting that back will help me feel a little bit more like myself again...and I miss that.
Things are still super busy around here. I continue to struggle to find a balance between social activities with friends, household responsibilities, photography, and doctors appointments. In my mind, I continue to think that I can go, go, go like I used to-but increased back pain has been a reminder lately that I am doing too much and need to rest more. Before surgery, I have four more doctors appointments, four photography sessions, a fundraiser luncheon for The Pink Fund, a family reunion, starting a young adult cancer survivor support group at Karmanos, a few get togethers with friends, the charity fashion show benefiting the YSC, and the amazing benefit concert on Sunday that Patty is planning for us! Just to name a few! ;) Don't worry Mom, I am going to make sure to get plenty of rest in there too.
Tomorrow is the fashion show benefiting the Young Survival Coalition - it should be a fun time and if you would like to attend, you can still buy tickets at the door.
This Sunday is the wonderful benefit concert that Patty has been tirelessly planning for us. It is going to be such a fun time with fabulous music, and the silent auction items are incredible! I can't believe how generous everyone is! These are just a few of the great items available on Sunday....2 acoustic guitars, Red Wings tickets, two autographed hockey sticks from the Red Wings, an incredible gift bag from Martha Stewart Living including an autographed book and tickets to a live taping in NYC (a package valued at over $400!), an autographed football from Detroit Lions quarterback Matthew Stafford, local restaurant gift cards and much more! Patty and Eric from Berkley Music - we are so thankful and truly excited for Sunday!
Hope to see you Sunday if you are in our neck of the woods. Thanks again for the continued prayers, love and support for not only myself but for my family too! We truly appreciate each and every one of you!
ps. Mike would like me to mention that he took the colored pic of me posted above. He's finally learning how to work the camera - maybe that means I'll finally get to be in more pics now! :)
It was the most surreal experience yet. Unintentionally, I peeked out through my peripheral vision where I saw nothing but flesh tone color - no red, no curls, no volume...no nothing. From the corner of my eye, I could only see shape, texture, color, form - and it all appeared so foreign. I felt an odd clash between utter curiosity and a paralyzing fear, knowing that when I turned around to look into the mirror, it would be real. It would make it all real. It would be real that I no longer have hair - real that I have been undergoing chemotherapy = real that my body is fighting - real that I am battling cancer.
I watched their faces as Mike, my mom, and Kyle all witnessed each piece of hair fall to the floor. I held my mom's hand as the electric razor sent chills down my neck. I listened as they all commented on the newly discovered shape of my head. I stared into my loving husband's eyes as he watched his wife undergo such a drastic transformation...and he didn't care one bit. My amazing husband looked at me just like he did on our wedding day - with more love and affection than I ever thought possible. From that moment on, everything was okay.
Truth be told, I now feel a huge sense of relief. I am glad to have this next step behind me. I wasn't scared or nervous leading up to this day - I was just eager to get on with it. I am grateful for my incredible support system that spent the day with me today, and of course for Susan and her amazing team at Susan's Special Needs. I cannot thank them enough for making what could have been a very traumatic experience, a much more comfortable and peaceful one. The work they do is truly life changing and will leave a huge impact on my heart for the rest of my life.
Below are some of the images Kyle captured from the day...don't be frightened by my half shaved, half punk rocker hair in the second pic ;)
The initial wig fitting...
Loving the new wig...it looks just like my hair does when I straighten it!
Kyle - Thank you for being the most supportive, caring, and loyal friend anyone could ever dream of! You are a true blessing to me and I am so thankful to have you in my life. Thank you for documenting this day for me. Love you so much!
Isn't my mom beautiful!!!!
My everything ♥
So be prepared to see a new look from me this summer. Whether it's sporting my new bangs, a fun printed scarf, or a stylish straw hat...I am ready for it all. I am super excited to avoid summer frizz, hair gel, and blow dryers for awhile.
Now on to bigger and better things....one of my very best friends, Brinley, and her awesome hubby and baby boy are coming to visit this weekend from West Palm Beach, Florida. I am beyond thrilled to see them and to finally meet sweet baby Andrew!!! This weekend will be filled with smiles, laughs, and lots of cuddle time and I couldn't be more excited for it. :)
Thanks again for all of the love and support everyone! You continue to bring us smiles and joy, even during the hardest times.
Although I would have liked to keep my Mother's Day post front and center for awhile, I feel like I must forewarn you about a big change on the horizon. Right now I am on what many consider to be two of the toughest chemotherapy drugs. Without a doubt they cause complete hair loss, usually beginning the 15th day after your first chemo treatment. Sure enough, like clockwork, last Friday (my 15th day after chemo was initiated), my hair began to fall out. I woke up in the night and felt a few loose pieces on my face, then noticed a few more strays on my pillow in the morning. Over the course of the weekend, I have gradually lost more and more hair. I have since tied it all up and decided not to touch it until Tuesday. You see, I have never been the type to sit around and see what happens. I would rather take the bull by the horns and jump right in with both feet. So, for the past few weeks, I have had Tuesday, May 10th marked on my calendar as "Baldy Day". Tomorrow, I will be shaving my head and saying good-bye to all these curly locks.
I find it sort of funny and ironic, that me, of all people will be losing their hair. My hair, whether I liked it or not, has always been my sort of calling card. If people were describing me to someone else, it was always, "Oh you know Meghan, the one with the curly red hair." I am proud to say my buddy Andy & I were even voted "Best Hair" in high school for goodness sakes! I also have to laugh a little and wonder if God is playing a sick joke on me or trying to teach me a lesson because I have always complained about my hair. It was always "too red" or "too curly" or "too frizzy" or "too poofy." My mom has repeated to me for YEARS, "You should be grateful for your hair. Do you know how many people would pay good money for hair like that!" Just as I have finally learned to accept and appreciate my uniqueness, there goes my hair! I guess I will now have to accept and appreciate my uniqueness in a new way now- with Demi Moore's GJ Jane look! :)
When Mike's mom was battling cancer, we learned of a wonderful place by the name of "Susan's Special Needs", located in nearby Pleasant Ridge. Susan is an absolute Godsend and makes this entire process so much easier and less traumatic. She specializes in all things related to what women may need during and after treatment. Anything from wigs, hats, scarves, mastectomy bras, specialized pajamas for women going through premature menopause due to chemotherapy treatment--you name it, she's got it. She and I have found that we share a million different connections - not only did she assist Mike's mom during this time in her life, but she knows many of our other relatives, her daughter's name is Meghan and she also just graduated from Miami University, where I went to undergrad. Susan has taken exceptional care of me and wants to make this experience as comfortable as it possibly can be for me and my family.
Unless you or a loved one has gone through it, you would never believe what goes into the process of getting a proper wig. It is so detailed and intricate and truly requires a professional like Susan and her amazing staff. This process began my first day of chemo where we had to go and pick a wig type (human hair or synthetic), decide what length, shape, cut, and color. We found a human hair wig that looks exactly like my hair does when I wear it straight, and we color matched it very well. The wig arrived last week and it looks great! I never thought I would even want one and figured I would wear scarves all the time - but it will be nice to have on those days when you don't feel like having everyone look at you like you are sick.
Once Susan and her staff shave my head tomorrow, the process of properly fitting my wig will take a few more hours. Susan's team will complete the initial fitting and then go hand stitch the wig to my specifications, come back out and fit it to my head, and then repeat the process as many times as necessary to ensure a 100% proper fit! So, I will come into the shop with hair, and actually leave with hair!
So, enjoy these last few images I took a few days ago of me with my curly, red mane and be prepared for an entire new look from me tomorrow. My wonderful friend Kyle will be going with my mom, Mike and I in order to help document this next phase of the journey. Be prepared for my Mr. Clean look-a-like pics soon to come! :)
Hopefully, it will eventually grow back out and start to look something like this....
My blog to keep you all