Spending four days in the warmth and (occasional) sunshine of Florida with the Johnson fam was definitely good for the soul. Although Brin and I chat every few days and she is so great about sending me pictures and videos of my little buddy Andrew, it pales in comparison to spending time together in person. It was so much fun to see how much Andrew has grown and changed over these last few months and I was so grateful to be able to be at his first birthday party! Brinley put so much time, attention and love into Andrew's party and it was simply perfect. From the adorable whale shaped desserts, to the starfish sandwiches, and the month by month pictures documenting Andrew's first year -Brin thought of everything! All of the adults and kiddos had a wonderful time, and most importantly, Andrew was showered with lots of love and attention as he celebrated his first birthday!
Brin, Andy & Andrew - thank you so much for such a wonderful visit. I am so grateful for these moments together. I love you guys so much and miss you already! ps-tell Puka I miss his nightly snuggles too! ;)
Last week was the first week since mid-September that I didn't have at least one doctor appointment! So crazy. It was nice to have some time to just rest, visit Julie and her kiddos in Ann Arbor, and celebrate two of my besties turning the big 3-0! It was fun to get a little dolled up on Saturday night and go out to celebrate with my friends - it's been awhile! Happy birthday Meg & Nic!
I am so thankful for fun times like these because often the days in between can be difficult for me. I am feeling good physically, but the mental and emotional aspect of living with this disease is a day to day struggle. In the past week, I have heard of three women I knew of (although never met) dying of metastatic breast cancer. The week before that, two women in my online support group passed away. Most of these women were in their thirties. Each and every time I hear something like this, it is a huge blow and usually puts me into a funk for awhile. It just feels surreal sometimes to think about the fact that I am battling a disease that will very likely take my life one day. Some days I just can't believe it. Thankfully, I have the most incredible husband on the planet and he always knows how to help me regain my focus on the positive and all the blessings in our lives. I am also so grateful for my new dear friend, Lorri. She is riding this same crazy roller coaster and we have so much in common - from our amazingly supportive husbands to our thoughts on our lifestyles and nutrition. During our first phone conversation which lasted nearly 3 hours, we basically completed each others sentences. I am beyond grateful to be able to call or text Lorri when I am feeling down or scared, or when I am excited about a great survivor story I heard. It is such a blessing to have a friend to turn to that truly knows exactly what I am going through and what a difficult journey this truly is.
And of course, as always, I continue to thank God every night for all of the prayers and support from all of you. I truly mean it. I will never be able to accurately put into words what it means to me when I meet someone that follows the blog and they tell me they are praying for me. Or when I get an email from a newly diagnosed woman that has been directed to my blog and she says she finds strength and inspiration from it. I just never expected it and I am not sure how to react when people say these things, but I just want to thank everyone that continues to support me and pray for me. Next month will be one full year since I was diagnosed! Can you believe it?! I truly never realized how much strength and hope I would receive from all of you following my journey, so all I can say is thank you for being there for me each and every step of the way for all these months. Please continue to keep me and my family in your thoughts and prayers.
I came across this passage today and it made me think of my own journey. It was especially poignant for me today as I thought about the women that we have lost over these last few weeks. It is a constant struggle whether to allow myself to read other women's blogs, or whether to allow myself to become close to other women with late stage disease. I know it puts me in a vulnerable position - as many become very ill and sadly succumb to the disease. But although it hurts, I will continue to reach out to them, just as all of you have reached out to me. Thank you for never giving up on me.
"Write about your own experience. By that experience someone else may be a bit richer some day. Read widely of others’ experiences in thought and action – stretch to others even though it hurts and strains and would be more comfortable to snuggle back into the comforting cotton-wool of blissful ignorance. Hurl yourself at goals above your head and bear the lacerations that come when you slip and make a fool of yourself. Try always as long as you have breath in your body to take the hard way, the Spartan way – and work, work, work to build yourself into a rich continually evolving entity."
- Sylvia Plath
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!
Chemo is over!!!! It's been 20 long weeks - 5 months - 4 brutal rounds of Adriamycin & Cytoxin - 11 rounds of Taxol - 15 rounds in all - total hair loss, including eye lashes and eye brows - 5 days of dramatically low blood pressure - 1 episode of passing out - 4 injections of Neulasta from Mike - countless medications - many headaches, visual changes, back and joint pain & muscle spasms - too many needles and pokes to access my port - weeks of annoying hot flashes, runny nose and eyes - daily fatigue with countless hours spent in bed, and.......I MADE IT!!! I am not the type to toot my own horn, but I must admit that I am pretty proud of myself for making it through these last 5 months. I rarely complained and tried to keep my head held high through it all, because I knew I could do it. I know I can get through anything, especially with my amazing support team. I swear, if all it took to beat cancer was sheer drive, motivation and hard work - I would have had it beat already! I can't thank you enough for all of the many ways you have shown your support throughout chemo - it has truly helped us get through the hardest times. I am so grateful that this first huge hurdle is over and that I made it through in the best shape possible, but I know the journey continues. There will be many more hurdles along the way, so let's get on to the next!
For many weeks now, I have wanted to share what Chemoland is like. But, there has always been something else that I wanted to share at that particular time, so I never got around to it. Today I wanted to give you a small glimpse into the world at the Weisberg Center (aka Chemoland), because it has become a bit of a second home to me - as odd as that may sound. The Weisberg Center is a satellite of the Karmanos Cancer Institute, located in Farmington Hills. The main hospital in downtown Detroit is a part of a huge medical center that is always crazy busy, with tons of people running around, and it can be a bit overwhelming. I am so grateful I get to receive my care at the Weisberg Center, which is a much more intimate, relaxed, and peaceful environment.
Here are a few pics I took to let you see where I spend much of my time these days. The images are limited in order to protect the privacy of patients that were already in the clinic on this day.
A couple snapshots of the lobby...there is also another section over by the windows with comfy arm chairs, a television, and reading materials.
A gorgeous water wall that makes the lobby feel very tranquil
There are three main areas in the building, aside from the reception and main lobby. There is the clinic where I see my oncologist, the front portion of the building where they do imaging and radiation, and then there is the infusion side where I received my chemo.
This comfy green chair in the infusion area is where I have spent many, many hours throughout the last 15 rounds of chemotherapy. There are walls on either side that allow for some privacy, a huge window on one side that looks out onto the garden, a television, and then one side is open so the nurses can keep an eye on all of us.
Behind the building there are beautiful, lush gardens with many animals, flowers, and sculptures. There is a patio with tables, chairs, and benches where family and friends are able to sit and relax. The windows on the left side of the picture below are the ones that you see in the picture above, next to my infusion chair. So this garden is what all of us patients are able to see while we receive our chemo treatments.
Doesn't it look as peaceful and relaxing as chemo can possibly be? Although the Weisberg Center is beautiful, that's not what makes me so grateful that I receive my treatment there. It's the wonderful people. There's Felicia - the receptionist that greets Mike and I every morning with the biggest smile and most heartfelt, "How are you?". She has known us by name since day #1. I don't need to sign in, or wait at the desk for my wristband - I am able to go relax in a comfy chair because Felicia insisted on it from the very beginning -she goes out of her way to come find me and check me in. She somehow knew when it was Mike's birthday and even tried to make it special for him by giving him a little "happy birthday" name tag. She is the best and I wish that every doctors office or hospital had someone like Felicia sitting at the front desk, always with a huge smile, and kind words to try to brighten your day and make you feel better.
I have talked before about how much I adore Dr. F, but I also love my infusion nurses - they are the best! Denise, Traci, and Ashley are the nurses that have taken awesome care of me during these months of chemo, and Tiffany who assists them. They are always so friendly, warm, and caring. As a patient, they make me feel that they truly care about me, that they are really looking out for me and that they are cheering me along! I am so grateful to have such a wonderful team around me. Even though I am glad to finish up these treatments, I will miss seeing them every week.
Although chemo is over, I will continue to spend a lot of time at the Weisberg Center since this is where I will always see Dr. F and where I will receive 30 radiation treatments later this year. If I have to go through all of this, I am at least glad that I get to do it here - a place that makes me feel so comfortable, and where the Cheers theme song is true, "where everybody knows your name!"
At 5:30 am the morning after chemo ended, we left for sunny Fort Lauderdale, Florida. Mom, Doug, Mike and I took a little Labor Day trip to celebrate finishing chemo treatments! Our wonderful friends, John & Paul invited us to come stay with them and it was perfect! They have a beautiful home on a canal off the Intercoastal waterway, only a mile or so from the ocean. We had a perfect trip spent relaxing at their pool, walking along the beach, eating lots of yummy food, and visiting with lots of friends! Aside from visiting with John and Paul, we were able to spend time with my mom's great friend, Sally and her family as well as meeting up with Brinley, Andy, Andrew, and Brin's parents. The weekend flew by so fast, but it was just what we needed to recharge our batteries.
John & Paul's home has the most amazing landscaping - their property is covered with luscious plants, trees, and flowers. You can't even see their house from the street, or from the dock because it is surrounded in this incredible landscaping. While relaxing in their pool, it felt like I was engulfed in a tropical forest that gave us complete privacy from the outside world. It was simply gorgeous.
Being near the ocean is always so relaxing for me. It is a great reminder that we are such a small part of this vast and huge world. Hearing those waves and seeing nothing but the bright, blue sea until it meets the horizon, helps me remember that there is a greater power at work in our lives and He is capable of amazing things.
John & Paul - thank you so very much for letting the four of us come invade your gorgeous Florida home for the weekend. We had so much fun with you and we are so grateful we were able to do this! Mike already misses his morning egg sandwiches. ;)
We are now back to reality. The school year officially started for Mike today and I will be heading back to the doctor on Thursday to get my test results and discuss our future plans. I hope everyone had a wonderful, relaxing Labor Day weekend. I'll be sure to update the blog again at the end of the week to keep everyone updated with the latest news.
Don't forget to mark your calendars for a great event on Sunday, September 25. Our dear friend, Patty has been working hard to make this happen and we are so grateful! Please contact Patty if you would like to contribute to the silent auction. Tickets for the event will be available at the end of the week.
My blog to keep you all