Let the "scanxiety" begin....ugh, it's that dreaded time of year when I get all my scans redone. I try very hard to remain calm, optimistic and hopeful - but let me tell you, it's pretty tough. I have come to realize that this scanxiety is something that will never go away. It doesn't matter how many times I have a good scan - the worry, doubt and fear all come creeping back in when it's time to be scanned again. Although I like to focus on how wonderful it will feel to get news that I am still in remission, that I can stay on my current treatment regimen, and that everything I have been through is paying off - I can't help but be terrified of the alternative. That the cancer is active again, that it's spread, that my medicines are no longer effective, that it's infiltrated my liver or brain.
My wonderful friend Meredith has taught me to try to think of the worst possible scenario and how I would handle that, and what would our plan be. That way, it takes away some of the fear of the unknown and you can try to help prepare yourself in some way should that be the news you receive. I have been spending some time thinking about this lately and trying to think about how my life could once again change in an instant when Dr. F delivers my scan results. Would I have to start chemo again? Would I need more radiation? Do I need to start new medications? What would the side effects of those be? Do I need to look into clinical trials? Last night as Mike and I laid in bed, I asked him that very question -"What would we do if the results show it has spread?" His response is just another example of why I am so blessed to have him love me. Without hesitation, he simply stated, "We would do anything we had to do to get you better."
Over the course of these past 11 months, I have been slowly adjusting to living a life with cancer. I have come to understand that I will deal with this disease and its effects in one way or another for the rest of my life. Fine - no problem - I can do that. I just want to remain stable. I pray that the disease is still stable, and that I can continue living my life as I am right now. Aside from a few minor things, I have very little side effects with my current treatment plan. I feel good about 90% of the time. I am enjoying being back at the gym and back to yoga classes. I look forward to returning to my job after my next surgery. I am able to travel and spend time with family and friends without worrying too much about how my body will hold up. So, I can't help but worry about these upcoming results changing all of this for me.
I used to say, "okay, I have cancer but hopefully I won't lose my hair", and then it went to "okay, I have to lose my hair but maybe I won't have to lose my breasts." Then it once again changed to, "well, I have to lose my breasts but please just let me still be able to have children." Sadly that statement was forced to transform once again into, "well, I can't have children but please just let me be stable and lead a long life with Mike." And of course "stability" is what I truly want - if I can't be cured (although I do still believe in miracles!), then I pray for stability - for a long, long time. But it all truly boils down to one thing - I can (and have) given up so, so much - and I would gladly do it again in a heartbeat if I knew it would allow me to lead a long and happy life with the people I love. But you see, no one can make such promises. None of us know what our future holds and how much time we have. The difference is that I never used to worry about dying before - I took it for granted that not everyone is afforded a long and healthy life like I assumed I would have. So, I have to make the conscious decision to try to release the worry and fear and give it up to God because I am not the one in control. All I can do is continue to live each day to the fullest and be grateful for each day.
With that said, I would sincerely appreciate as many prayers, healing thoughts, and uplifting words as you can possibly share right now. These times are very tough- not only myself, but for Mike, Mom, Doug and Jeff as we all anxiously await the results. Please pray that this disease is still in remission, that my spine is healing, that my organs are free and clear of disease, and that our anxiety and worry doesn't consume us while we wait for the results. My tests are scheduled for this Tuesday and Wednesday and we won't receive the results until the following Thursday, which is March 1st. You have no idea how much your prayers, thoughts, and comments help lift us up and keep our spirits high during these times!
Thankfully, Mike and I will have a great distraction from my scan results. We leave for New Orleans on Thursday morning! We are actually going to attend a breast cancer conference but we will have plenty of extra time to just enjoy the city on our own. We are such great travel partners and always have the best time when we are exploring somewhere new with each other. Exactly one year ago was the last trip we took by ourselves when we visited Seattle just a few weeks before I was diagnosed. Check out some images from our trip here. We had the best time and I am sure New Orleans will be no different!
Friday evening through Sunday morning we will be attending the Annual Conference for Young Women Affected by Breast Cancer. Young women under the age of forty come from all over the world to attend this conference. There are excellent guests speakers, many of which are leading researchers in the field of breast cancer. There are numerous break out sessions dealing with everything from integrative medicine, an update on the latest metastatic research, and even sessions solely for male caregivers. We are both looking forward to learning a lot and I also hope to meet other young women with metastatic disease such as myself.
Of course, we will find plenty of time for some beignets at Cafe du Monde, grabbing a great cajun meal, and checking out the sites of the French Quarter. We are really looking forward to it. Thanks in advance for all of your thoughts and prayers for my upcoming tests - I will be sure to update the blog next week once I get the results!
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!
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