Well, nothing can hold me down for too long. :)
My surgery was last Tuesday with Dr. M and everything went as well as expected. We headed to the hospital around 7:15am, I was in pre-op around 8 or so...goofing around with the hubby to pass the time.
Surgery didn't begin until closer to 10am and the next thing I knew, I was groggy and attempting to wake up in the recovery room. Dr. M told the fam that everything went as well as it could have. He was surprised to discover an unusual amount of scar tissue that had developed on the left side. He said the mesh implant was well incorporated into my tissue, which is what is supposed to happen, but for some reason my body was still rejecting it. He cleaned out the scar tissue, removed the mesh piece, and replaced the implant with a new one.
Unfortunately, I did wake up with one of the lovely surgical drains that I came to despise after my mastectomies, but Dr. M assured me that it could come out in a few days. Dr. M is not only a talented surgeon, but an all around great guy and met me in his office on Saturday morning, even though it was closed, to take out my drain so that I didn't have to wait until Monday morning at my scheduled appointment. It means so much to me to have doctors that not only give me their personal cell numbers but are willing to see me on their day off just to make me more comfortable. I definitely felt so much better after that drain was taken out! Oh, and I should mention that he did a really great job aesthetically as well. I do have some minor post-surgical swelling but nothing compared to what was there before. My chest finally looks symmetrical again and back to the way it looked before this crazy swelling issue began in August.
Since the surgery on Tuesday, I have been taking it a little easy but overall I have been feeling really good. I really dread taking medicine of any kind and feel bad that my poor body has had way more than it's fair share of meds already. So, I took some Motrin the first day or so, but haven't taken any pain meds since. I have felt a little sore (mostly on my side where the drain tube was coming out of my chest), and definitely a little tired - but that's about it. I made sure to have a good chat with the anesthesiologist and nurse anesthetist prior to surgery about how awful my last experience was with nausea. They were really great and tried some different drugs with me and it really paid off because I didn't experience any nausea or vomiting after surgery at all. Woohoo! That's what I was most nervous about this time around.
I did get out of the house for Thanksgiving and spent the day at Momma Jan's with the fam. I was pretty worn out afterwards but it was nice to be with the family. Friday night I escaped the house again to see a movie with some girlfriends, and last night Mike and I went to see The Who! It was his bday gift this year and we had a great time. We were definitely the youngsters in the crowd but Mike loves his classic rock. :)
I am planning on getting back in the swing of things with my photography business this week and heading back to work in the clinic on Tuesday. Thank you so much for all of your prayers and well wishes. They truly do help ease my mind when I am heading into something like this.
As for what happens next, I will get my usual lovely injections this week and then the next big thing is SCANS! Ugh. The dreaded scans. Dr. F only ordered a bone scan and full body CT this time, so at least I get to escape the awful MRI machine. My scans are scheduled for December 19th - Merry Christmas to me. ;) The good and bad news (depending on how you look at it), is that I won't get my scan results until January 3. Good news - If the scans are great, it won't ruin my Christmas. Bad news - I have to wait a full two weeks to hear the news which could drive me crazy. Since I see my oncologist at a satellite clinic, he is only there once each week, and he is off on December 27, which is why we have to wait until the 3rd. This is obviously the most stressful and anxiety ridden time for us so I will definitely be asking for your prayers again.
Guess that covers it all for now. I hope everyone had a wonderful Thanksgiving. It was wonderful seeing so many people comment on facebook about what they were thankful for. I hope that it carries over to the other 364 days of the year because there is truly so much to be thankful for - each and every single day.
A little peek at what I am most thankful for...
Just a quick little note to let you all know that surgery is tomorrow morning. I truly do appreciate all of your well wishes, prayers and good vibes. I need it and crave it and it calms my heart when I hear from you. Mike, Mom, Doug and I will head to the hospital around 7:15am and surgery will take place a couple hours later. I am not sure how long the surgery will last but I think a couple hours at the most. I am hoping that I will be back home and resting in my comfy bed with clean and yummy smelling sheets by late afternoon. :)
Thank you in advance for all of the support and prayers. Truly. I will update everyone when I am feeling up to it. If I don't get back to the blog before Thursday, I wish all of you a happy Thanksgiving with the ones you love.
ps - Speaking of the one's I love....my best girl friends surprised me with a ladies night out last weekend and it couldn't have been more amazing. I truly have the best friends anyone could ever ask for.
It's often quite overwhelming and daunting to think about how much can go on in the span of a couple weeks....how many emotions I go through...how many highs and lows there are...and how my the status of my health can change.
The past few weeks have been nothing short of exhausting and overwhelming. There are times when I want to share with you all what has been going on but I don't even know where to start, and it makes me feel exhausted just thinking about trying to catch everyone up to speed. I apologize for that because I know you are all waiting for updates and want to know how things are going. Prior to my last post about the loss of my uncle, I was prepared to tell you about my trip to Vegas for my friend Nikki's wedding. It was great to see my old college roomies and have a few days of R & R - although I actually got a little extra time than I bargained for since I accidentally booked my flight home on the wrong day. :) So, I got a little extra fun in the sun and enjoyed not only the warm desert air and sunshine, but laughs with friends, good food, a great Cirque du Soleil show and even won a few bucks! I am grateful for feeling well enough to travel and spend time with friends!
After I got home from Las Vegas, it was back to full blown busy mode with 2 or 3 photo sessions each week, an amazing acoustic Ben Harper concert in Ann Arbor with Mike, doctors appointments & my monthly injections, support group meetings, and a fun fall baking day with girlfriends.
The past week or two so has been an especially difficult one for me. Of course, it all stems from the loss of my Uncle Kevin and all of the emotions that brings. Then last Wednesday, Mike and I were invited to an impromptu small dinner with Ambassador Nancy Brinker - the founder and CEO of the Susan G. Komen for the Cure organization. My local Komen affiliate has been wonderful about listening to my concerns regarding how isolated the metastatic breast cancer community often feels in the midst of all the Komen events and fundraisers. I will write a more in depth post on this another time but the meeting was my opportunity to voice my concerns and opinions to Ambassador Brinker herself - and that's exactly what I did. I would say that dinner went well but it was the start of another emotional few days for me involving a lot of talk about cancer, cancer, cancer.
The following day, Mike and I left straight from work to be with my family in Grand Rapids as we prepared to lay my Uncle Kevin to rest. Thursday night and Friday were spent remembering what an amazing guy he was and what a great impact he had on so many people. As I said before, these things are even more difficult for me now that I am living with this disease. It makes me wonder - what songs will be at my service? Who will speak? Is this how my family will be talking about me? I am thankful that Mike lets me be free to talk about whatever I need to, at any time. So, as we left Grand Rapids and drove to Chicago, we talked a little bit about my funeral. No, I am not dying - and I don't plan on heading that way for a very long time. But the reality of this disease forces us to discuss these things sometimes. And contrary to what you may think, it actually makes me feel better to talk about it. It doesn't help when someone says, "don't talk about that" or "that's not going to happen". Let us talk about it because the thoughts go on in our minds anyways and if we are free to discuss it, it lifts some of that weight off of our shoulders. ("Our", as in those of us living with metastatic breast cancer and other incurable diseases.)
We arrived to Chicago on Friday night and I was looking forward to just relaxing with our good friends Beth & Ben - and that's just what we did. We were not only in Chicago to visit our friends, but we went so that I could attend the Metastatic Breast Cancer Network's Annual Conference. Although, it was great to meet up with some of my friends living with MBC, the conference was difficult for me emotionally. I think I will talk about it more in my next post, but let's just say I was hoping to feel encouraged, uplifted and empowered and instead, I left feeling emotionally exhausted, frustrated and very sad.
First thing on Monday morning, I found myself back in my plastic surgeon's office. Haven't had the chance to tell you guys, but the swelling in my left breast returned a few weeks ago. I know Dr. M told me that if the swelling ever came back, surgery was inevitable. Well, after discussing the issue once again, asking more questions, and shedding a few tears - I left my appointment with surgery on the books, as well as a decreased sense of confidence that this will be the last of these problems. Of course, I trust Dr. M very much, but there is just no telling what will happen after he opens me back up. He will be removing the mesh tissue that we think is causing all of the problems. He will also remove the implant and replace it with a new one. Not only am I worried about the usual side effects from surgery - infection, pain, and the fatigue that it brings over me - but I am worried about what will happen once that mesh is removed. I obviously needed that mesh the first time around because my skin wasn't strong enough to support the implant on it's own. I am now praying that somehow I will be able to successfully support the implant without the mesh, because if I cannot, it means more complications and more surgeries down the road.
I know that this is nothing major in the scheme of things and that things could be WAY worse. I get that -believe me, I do. But, for the first time last week, I finally hit a point where I just didn't want to try to find the silver lining. I didn't want to have a pity party, but I just wanted to be able to feel sad and discouraged and know that it was justified to feel that way for a little bit. I began to question many of my decisions. Did I do the right thing by having the left breast removed? Should I have just dealt with the mastectomy and foregone the reconstruction? Am I causing my body more harm than good in the long run by going through all of these surgeries and procedures? Once I let myself ask these questions, express these emotions, and work through my feelings, I felt better and could get on with my day.
So, surgery is now scheduled for November 20th - if I told you a later date, that's because there was an earlier opening so they are getting me in a little sooner. Please pray that everything goes very well and that my body can sustain this reconstruction without the mesh, and without further surgeries and complications.
Thanks for your constant love and prayers.
As much as I love my doctors and modern medicine, I have to truly give thanks to the big guy upstairs for this latest news. Thank you God for hearing all of our prayers and allowing these steroids to do their job so that I could avoid surgery! My prayers - and all of your prayers - have been answered and I couldn't be more grateful. Surgery has officially been cancelled!
I called Dr. M's office last week and asked if I could move up my appointment from next Monday to today because I really needed to know if I was headed to the operating room or not. I was done with my course of steroids last week and could tell that they obviously helped decrease the swelling but wasn't sure it was enough for Dr. M to think that we could cancel surgery. Well, I saw him first thing this morning at 8am and he was extremely pleased with my response to the meds. He said all along that he really didn't want to have to operate on me and it posed all sorts of potential problems to go back in and open me up. So, when he saw me today he was very happy and said that the risks of the surgery don't outweigh the benefits right now. He said that there is a 90% chance that the steroids have calmed things down enough that my body won't have any other reactions to this mesh device he implanted. On the other hand, if it flares up again and I notice more swelling, I definitely have to have the surgery. But, we will cross that bridge when (and if) we come to it. As for today, I am just rejoicing in this good news and thanking God for giving me the break that I so desperately was praying for. I know I could have handled the surgery but I was definitely praying that it wouldn't be necessary. Now I will pray that my body starts to accept this mesh tissue as it's own and that no future problems arise.
These last few weeks have been filled with many tough moments for Mike and I. Any time something like this comes up with my health it reminds us of the demon we are fighting. Not that we ever truly forget but we got back into the rhythm of our busy lives and started planning for the future and didn't let this disease dictate each and every move. All of that comes to a screeching halt when a complication arises. This latest course of events brought a lot of emotions, fear and worry back to the forefront of our minds. It reminded us yet again that the future is unknown - for all of us. It reminded us that we need to be thankful for each and every day because we don't know what is ahead around the next corner. It reminded us that although we can try to plan and set goals for the future, this disease has the potential to rear it's ugly head and interrupt our lives at any given moment - and that is a hard pill to swallow. As much as I feel like I have handled this roller coaster pretty well since March 23, 2011 - there are many moments along the way where the sadness and despair could easily take me over.
I truly thank God for Mike every single day for riding this storm out with me and for being there for me in my darkest hours. I truly don't know how he does it - how he holds it all together for me - how he watches me break down and then he ever so gently puts the pieces back together and makes me feel whole again. In my heart I know that we were put on this Earth to be together and that if I have him, I can make it through anything. Mike - I love you through the depths of my soul in a way I never even knew possible until my ability to grow old with you was threatened to be taken from me. You are the light through this darkness and it is because of you that I can see my way to brighter days.
Thank you to everyone that has kept me in their prayers. I am so, so grateful for each and every one of you and so blessed to have the amazing support system that I have.
I am off to Vegas this Thursday to celebrate my college roomie, Nikki's wedding! I am so excited to spend the weekend with my Miami ladies and now I feel like I have even more cause to celebrate. Watch out Vegas---here I come!
One of my very best friends (thank you, Meg!) encouraged me to sign up for these daily inspirational and uplifting emails back when I was first diagnosed. Some days they are about relationship drama or working out issues with friends, or something that doesn't necessarily apply to me. But, more often than not, I feel like the messages couldn't be more fitting and this one in particular really resonated with me this weekend. I think it is something we could all strive to be better at. I know I will refer to it often as I continue to ride out this roller coaster....
Well, things haven't really turned out as I had hoped since my last post. I am far too exhausted, physically and even more emotionally, to go into every detail - but let's put it this way - last Thursday was one of the worst days I have had since the initial days of my diagnosis. My ultrasound was completed but then when it came to having the needle aspiration, literally, all hell broke loose. The few hours spent at the hospital ended up being in a small exam room accompanied by my mom, 3 physicians, a radiology tech, and my plastic surgeon on the phone (who thankfully stepped out of surgery to call me and acknowledge my frustrations, and try to reassure me that he will take care of me and figure this out).
What set this entire drama in motion was when the tech informed me they wouldn't be doing the aspiration because there wasn't enough fluid - before the radiologist even looked at the report!!! I simply lost it...I felt blown off...I felt that I wasn't being taken seriously....I felt like I wasn't able to voice my frustrations...I felt angry, upset, furious...I felt like, once again, the exact department that told me nearly 3 years ago I was fine and had nothing to worry about after my initial ultrasound and mammogram, was once again failing me. I could have screamed....and nearly did. I was so angry and frustrated that I couldn't help but sob.
If I hear the words, "the chances are rare that this is anything serious" or anything to that affect every again, I will absolutely lose my mind. I am so sick of those types of words. Those words and that mentality from the medical community is how I even got in the stage IV position. I feel like the medical community failed me and that if they took my concerns seriously and didn't blow me off because of my age, I could have been diagnosed at a much earlier stage. I blame them for my stage IV status and I blame them for what will likely be my shortened life expectancy. So, to make a long story shorter - upon feeling those same emotions once again, I unravelled and voiced my extreme frustrations through an uncontrollable stream of tears. I ended up literally storming out of that room after we talked in circles and realized there was nothing else they would be doing for me that day.....needless to say, I didn't make it back to work as expected.
So, today (well, actually yesterday - now that it is 1am) it was back to Dr. M, my plastic surgeon, to figure out where to go from here. The ultrasound showed some fluid accumulation but not nearly enough to account for how swollen I have become. The swelling is actually in the tissues and cannot be aspirated. Dr. M is fairly confident that my body is having a reaction to the collagen mesh piece that he had to insert during the surgery in May to help support the left implant. The most likely cause of the swelling is an irritation or sort of rejection of this mesh piece, rather than my body recognizing it as it's own and absorbing it into my own tissue as intended. There is still the chance that the swelling could also be an infection, a rare lymphoma or some sort of lymphedema that has developed in the mastectomy pocket.
After discussing the various options, and after more tears of frustration, this is the plan....I will complete a course of steriods to see if that takes care of the swelling. I started the steroids today and will continue taking them for one week. Bring on the jitters, uncontrollable snacking, lack of sleep and all the other fun that comes with 'roids. ;) I will see Dr. M on 9/24 to see what the result of the steroids is. If the swelling persists, surgery is scheduled for October 4th. This will be an outpatient surgery to remove the collagen mesh tissue and to take out the existing implant and replace it with a new one. A sample of my tissue will also be taken at that time and sent to the lab to determine if everything is A-OK or if there is any sign of lymphoma.
I am obviously hoping that the steroids help, but I feel like surgery is a very real possibility this time. I once again broke down at my appointment today just out of pure frustration. I am just tired. I am tired of the constant issues and although I am aware that things could always be much worse, I just really wanted a break for awhile. I am grateful that these issues aren't directly cancer related and that I am still stable as far as my disease is concerned. Speaking of which - I will head to Karmanos tomorrow morning for my 8 week follow up. My oncologist, Dr. F is on vacation so I will just see Lynette (his nurse practitioner) this time and have to fill her in on all the latest and greatest drama.
I will obviously keep everyone updated and let you know what the plan is after my appointment with Dr. M on the 24th. Please keep me (and especially Mike and my mom) in your prayers. We are all just feeling overwhelmed, frustrated and exhausted - not only with this current issue but there are always other things going on too and it all piles up sometimes. I pray that whether I just need medication or if it has to be surgery, that it will be effective to deal with this problem and that there won't be any other complications or side effects.
Thank you for your love and support.
ps. We had an amazing weekend up north at Torch Lake with dear friends and I am so grateful we had that chance to get away and decompress. It was much needed!
Our precious Goddaughter, Alice....
Sweet Miss Emma enjoying the gorgeous Torch Lake summer day!
What a crazy, busy, wonderful couple of weeks it has been. Between the Johnson's visit, 3 Day festivities, our friend Zak coming to visit, celebrating Mike's birthday, a family reunion and an extremely packed schedule for Meg Malley Photography - things have been super busy!
We had such a good time having Brinley, Andy and Andrew here for a week. It is always so great to see them and to be able to spend so much time together. Mike and Andy are like partners in crime and always have a great time when they are together, and of course, Brin and I never have moments without lots of laughs and tons to talk about. It was so amazing to see how much little Andrew has changed since I visited them in Florida in February. He is a total cuddle bug who gives great hugs and kisses. He loves to pretend to cook, and carries his pots and pans everywhere he goes. He is active, smart, and full of smiles. The week flew by too fast and of course I miss them already, but I am so grateful that they were able to come visit. I love you guys!
And then there was the Susan G. Komen 3 Day For A Cure....how do you even summarize this event? You truly need to experience it in order to appreciate how moving and special it is. I am so grateful that five of my wonderful friends (Brinley, Nikki, Becca, Chanell, and Janine) dedicated so much of their time and energy to training, fundraising, and completing this 60 mile, 3 day challenge.
There has been quite a bit of controversy and drama with the Komen organization this year. On top of that, after my diagnosis, I learned that many women in the metastatic breast cancer community feel very upset with Komen due to the way that funds are dispersed, and the disparity regarding dollars allocated to metastatic research. Although I may dedicate an entire post to my feelings on these issues at some point, today is not that day. What I do want to share is that despite what anyone may say, I am grateful for what the Komen organization has done to raise awareness for this disease, and even if it's only one cent put towards metastatic research- I am grateful for it because every little bit helps.
What I feel most proud about regarding the 3 Day event this year is that my friends know how I feel, they know what is important to me, and they went above and beyond to spread my message about metastatic breast cancer awareness throughout this 3 Day event. I often feel lost in the "celebration" at breast cancer events. I am not the same type of "survivor". Breast cancer is not in my rearview window. It's not in the past and it's not something that will ever be behind me. I live and breath it every day and often times I don't feel quite as celebratory as many of the women at these events that have beat their disease because they were fortunate enough to be diagnosed early. So, what did my friends do? They spread the word about metastatic disease everywhere along their 60 mile journey. They brought it out of the shadows even though it's not the perfect success story. They talked about it, displayed the words "Metastatic breast cancer" proudly on their tents and signs, and they raised awareness for the fact that thousands of women continue to live with this disease each and every day and that we have not been truly successful until a cure has been found for all of us! Not just those diagnosed early.
Team Meghan Malley Rally got robbed in the tent decorating competition. They should have won with their awesome Olympic themed decor...."Going for gold for Metastatic Cancer"....I loved it!
I was so proud of each of them (and all the other walkers!) and loved chasing them around and cheering them on all weekend long. They were amazing!
A huge thank you to the friends and family that came out to our cheering station on Saturday. It was so nice to see you there, supporting the walkers, and supporting me by your presence. The MVP of the day goes to Momma Jan - best cheerleader around...hands down! Thank you Mom and Doug for all you did that day- I appreciate it more than you know. Love you!
And a special, HAPPY 30TH BIRTHDAY to Becca Boo!!!! She celebrated the big 3-0 while walking all day long for this cause. What a great friend that is!
I am exhausted just looking back on the pictures from that weekend. :) What an emotional 3 days it is and I can't thank everyone enough for being part of it. Whether you walked, cheered, donated, or kept the walkers in your thoughts and prayers that weekend - thank you so very much!
After the Johnson fam left last Wednesday, our friend Zak came into town and we celebrated Mike's birthday, which was Saturday. It was a great weekend filled with lots of friends and family. HAPPY, HAPPY BIRTHDAY to my very best friend and the most incredible person I know. I am so very honored to be your wife and I look forward to celebrating many more birthday's with you in the future. Love you so much!
Well, it has been 7 weeks since I received my great scan results and I was really hoping to make it until the next scans in January before I had to deal with any new speed bumps, medically speaking. Unfortunately, that is not the case. I have been noticing some changes with my left breast over the past few weeks - swelling, changes in shape, warm to the touch. I have learned by now that I need to trust my instincts about my own body so I got in to see my plastic surgeon, Dr M. as soon as I could.
I saw him this morning and he is concerned. He doesn't know exactly what is going on and the cause of the swelling could be from a few different sources. To spare you all the details, many of which I am still trying to understand, this could be as minor as some blood accumulation due to some trauma that I wasn't aware of, all the way to something very serious such as a type of lymphoma that (VERY) rarely occurs after receiving breast implants. Needless to say, I am very worried. I don't want any complications. I don't want more surgery. I was finally starting to feel "normal" for awhile. I picked up more hours at the clinic and Meg Malley Photography is booming and keeping me so incredibly busy! I head to the hospital tomorrow for an ultrasound and needle aspiration of the fluid that is accumulating in the left side of my chest and breast. I will then have to wait for awhile until the results come back from the lab telling us what this is. I am praying that it will only require some simple intervention, such as Dr. M draining the fluid. I will be sure to keep you posted. Please keep me in your prayers that this is nothing serious and that life can continue as "normal".
Hope everyone is doing well and enjoys a wonderful Labor Day weekend. We are headed up to Torch Lake with our friends and I can't wait for some R & R!
I am super excited to be coming to you from my desktop computer, and not the laptop - which means I have peeled myself off from the couch! woohooo!!! It's the little victories, people. ;)
Friday was a bit of a doozy for me but thankfully, all in all, surgery went well and was a success. I had to be at the hospital at 6:30 am for all my pre-op stuff, went into surgery a little after 8am, and was out of surgery a couple hours later. Dr. M came out to talk to the fam and let them know everything went well. The surgery itself was fairly uneventful except for one complication on my left side. There was an area where my pec muscle had sort of collapsed and wasn't covering the tissue expander properly. It's so interesting to find this out because I knew there was something wrong with this particular spot ever since my mastectomy. I could not only see, but feel that something was different there but no one knew what it was. Just one more example of how we should always trust our intuitions about these things - we know our bodies better than anyone! Anyways, Dr. M had to implant some sort of synthetic mesh tissue to build that area back up and apparently over time my body will begin to recognize this as normal tissue and start to heal itself. Modern medicine is amazing, huh?!
Although surgery went well, my experience in post-op while coming out of anesthesia was just about the polar opposite. I truly felt like I was hit by a Mack truck! Every inch of my body ached and hurt, and it honestly felt like I didn't have an ounce of pain medication in my body. On top of that, I was extremely nauseous and thought I was going to vomit. This was nothing like my experience with the double mastectomy. I was a little nauseous after that but my pain was so well controlled - this was a level of pain like I had never felt before! To make matters worse, my post-op nurse was let's just say, less than friendly or compassionate.
I was extremely groggy but I remember telling this nurse that I was in a great deal of pain. Well, she proceeded to say that because I was also nauseous she would not give me any Vicodin until I ate. Next thing I know, she shoves a bowl of saltines in my hand and tells me to eat. Now let's think about this...I have not been allowed to eat or drink anything for 14 hours at this point which means my throat is as dry as the Sahara, I was just intubated with a tube down my throat for 2 hours which means I am very sore on top of the dryness, and to top it off, I am nauseous and don't have the desire to eat one morsel of anything! I remember trying to chew and swallow one of the crackers, and the nurse comes back and says, "Well, did you eat?" I then nod my head yes and she looks in the bowl and with disgust she says, "Ugh, you only ate one - I am not giving you the meds until you eat more." This lovely lady then decides to sort of lecture me and make me somehow feel bad that I can't take the medicine she wants to give me for anti-nausea because I have a major sensitivity to it and it bottoms out my blood pressure...."Well, you would feel better if you could take the Zofran.....Well, I can't give you the Zofran so that's why you are nauseous...." It was as if she thought I was just choosing not to take it to be a pain in the butt or something. So what does she decide to give me? Benadryl! So now she expects me to finish eating those crackers while I struggling with every fiber of my being to keep my eyes open. Ugh - it was not fun.
Thankfully, what seemed like an eternity later, they let Mike, Mom and Doug come back and see me. They had been in the waiting room worried since Dr. M told them they would probably be able to see me 45 minutes after surgery, but in actuality it ended up being 2 hours because of all this nausea/pain craziness. I knew as soon as Momma/Nurse Jan was back there with me, I would get the meds I needed and hopefully start to feel better. Well, the next thing I remember is literally feeling like they were pushing me out of the door. The nurse told Mike to go get the car, my mom helped me get dressed and I just remember begging her to let me get back in the bed. The thought of being transported in a wheelchair and riding in the car sounded awful! I actually don't really remember riding in the car or how I got in the house. I woke up a few hours later in my bed and was so grateful to be feeling a little better and not so, "I was just run down by a stampede of wild buffalo" feeling.
My "Hope" bracelet is so special to me. I have worn it each and every day since last April when my sweet friend Katie gave it to me. She also gave a similar one to each of our Beauts, and one to Momma Jan. I am always bummed out whenever I have to take it off for surgery or an MRI.
Saturday I felt pretty darn good. Of course, I felt a little sore but I wouldn't really even call it pain. Mike had a baseball tournament which I didn't want him to miss, so Momma Jan stayed with me and I also had a few sweet visitors come by to keep me company and bring me treats--thanks friends! And there was one sweet puppy who wanted to be lazy and spend lots of time next to his Momma, on his new doggy bed....
Sunday brought some tummy issues that I always seem to have after surgery. The anesthesia and pain meds just mess up my stomach and make me feel nauseous sometimes so that was the problem on Sunday. I stopped taking the Vicodin on Saturday to try to avoid it's effects on my stomach but I think it takes awhile to have your system bounce back from all of that. I pretty much didn't move from the couch and just spent the day watching trashy tv. :) Yesterday, I started feeling better but was still dealing with a little bit of an upset stomach, but today I am feeling much better! I haven't even sat on the couch once yet today and it's already noon - victory! :)
I am honestly bored to tears and am not used to laying around like this. It's a catch 22 because I am bored but don't feel 100% well enough to go do much. Sadly, Dr. M told me absolutely no exercise for 2 weeks. I seriously just wanted to walk on the treadmill or slowly ride a stationary bike but he said, "NO!" Then when I said, "well, I will be able to just walk around the block, right?" He said, "what don't you understand about this - no!" It was kind of hilarious with the two of us going at it right before surgery. So, I will feel much better when I can get back to the gym and start moving again. I see Dr. M on Monday and hopefully he will cut me a little slack then. :)
In other news, I got my port out! Woohoo! That was a bit of an unexpected surprise. Dr. F told me last September when chemo was over that I could get it out but I was honestly worried that I would need it again for more chemo or something. After my good scans in February, I felt a little better about not needing it but I was still apprehensive. So, after my appointment with Dr. F a few weeks ago, I decided to just go for it and get it out. I figured that it would be nice for summer time to not have this big thing popping out of my chest, and Dr. F reminded me that it's a source of infection so it's smart to have it out. I scheduled outpatient surgery at the end of May to have it removed. Well, during pre-op while I was talking to Dr. M, he said, "Well, we aren't using it today so why don't I just take it out. I do it all the time!" Bonus! One less surgery to worry about. So, although my port never really bothered me and I didn't even mind it too much, I got rid of it and it's nice to have one extra foreign thing removed from my body. Now my little scar just needs to heal up and I'll be good to go.
Thank you for all your kind thoughts and prayers while I went into surgery and have since been recovering. It always boosts my spirits to hear from people and I appreciate it so much!
In other exciting news...this downtime has allowed me to concentrate more on my new little baby, "Meg Malley Photography". A few weeks ago, I officially registered my business with the county and I have decided to take the plunge into being a small business owner. I started a Meg Malley Photography Facebook page over the weekend to post my latest work...feel free to check it out here -http://www.facebook.com/MegMalleyPhotography
And of course, you can see my full website at www.megmalleyphotography.com. I am looking forward to devoting more time and attention to this part of my life because I truly enjoy it so much!
Hope everyone has a great week!
Do you ever sit back and take a minute to reflect on exactly where you are in your life? Not in the sense of a geographical location, but where you are spiritually, psychologically, emotionally. How did you end up there? What events throughout your life led to this exact moment? Where would you be if you chose the other path when you came upon the fork in the road?
We have all ended up exactly where we are based on a series of choices - and those choices have likely been influenced by a number of different people and circumstances throughout our lives. I think one major point of this crazy thing called life, is to learn from those choices - to reflect on where they led you - and to decide if that is a path you should continue to travel down, or perhaps it is time to venture out and try something new.
Are you truly happy in this moment? If not, what can you do about it? Are there steps you can take to actively participate in the direction your life is heading? Or are you willing to sit back and watch it all unfold without attempting to change the angle of your sails and steer yourself towards what brings you joy in this world?
The only way that I have found to live with true happiness while facing this disease, is to try to turn it into something positive. To try to somehow make a difference - to educate, to support, to befriend, to create awareness, to speak out. If I simply sat back and wallowed in self-pity about this hand that's been dealt to me, I would be miserable. What good would that do for anyone? For me, Mike, my family, and my friends - it would suck everyone down into a deep, dark hole. Instead, I have tried to do what I can to turn this situation around and make something good come from it.
I am grateful that New Balance and Chris Pearson, the director of the Mid-Michigan affiliate of Susan G. Komen for the Cure gave me the opportunity to share my story last Sunday at the Race for the Cure in Lansing. I nervously stood on the steps leading up to the State Capital building and awaited my introduction. Just moments prior, I almost lost it as the opening ceremonies began and young dancers performed in front of the crowd. As I watched my mom and saw the tears stream down her face, I was reminded of how hard this is for everyone. But, I knew it was important that I take this opportunity to share my experience and try to make some kind of positive impact.
As Mike and I walked up to the podium, I felt a wave of nervousness wash over me. But after bobbling the first few words of my speech, I took a breath and simply spoke from the heart. I shared my story and emphasized what I believe to be the most important aspects of my journey - that it is a myth that young women are not affected by breast cancer, and that there needs to be more research and awareness for metastatic disease because no one dies from breast cancer unless they become metastatic. Research investigating why cancer cells metastasize and how to stop this from happening are the only ways we will actually find a true cure!
Thankfully, I was able to get through my entire speech without breaking down. That was one of my goals because once those flood gates open, good luck getting them closed for awhile! I want to thank Mike for literally and figuratively always standing right by my side, no matter what. There is no one I would rather travel down this road with than you! Thank you to my family and friends that came out to support me and to all of you that sent me well wishes and good luck vibes from afar. I am so thankful that I have received such amazing feedback from this - especially from my friends in the metastatic breast cancer community. I truly wanted to represent them well and speak on behalf of every single one of them.
If you would like to see my speech, please click on the link below. Looks like I can cross this one of my bucket list..."Share your story in front of 5,000 people!"
Here are a few pics from the day that Kyle captured...
I don't know what made Mike happier - listening to me speak or meeting MSU's football coach, Mark Dantonio and hearing him mention me in his speech to the crowd.
I love all of you guys - thank you so much for coming! Sorry we missed Aunt Erin, Mary, Melis, Brad and Payton in our group pic.
Well, tomorrow at 6:30am we are due to check in at the hospital for my next scheduled surgery - never a dull moment around here I guess. :) My surgery will begin at 8am and will last a couple of hours, followed by a couple of hours in recovery before I am able to head home. This is (hopefully) the last major step in my reconstruction process. Tomorrow, Dr. M will open up my scars from the double mastectomy and he will proceed to remove the tissue expanders and replace them with implants. He will then make some fine-tuning adjustments to ensure a proper fit, size and shape. Dr. M has informed me that I will likely be sore and down and out for a few days. I will have strict restrictions to avoid any lifting, carrying, pushing or pulling for 2 weeks at a minimum, and no returning to work for at least 4 weeks. Thankfully, momma nurse Jan and Mike will be here all weekend and into next week making sure that I am doing just fine. I am expecting surgery to go smoothly and that I will have an uneventful and speedy recovery.
I would greatly appreciate all of your thoughts and prayers as I head into surgery tomorrow - not just for me but for my family as they anxiously await the outcome, and for my medical team that will be taking care of me. Thank you all so much for your enduring support and we will be sure to update you soon once I am out of surgery.
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!
My life, as I knew it, became dramatically different nearly seven months ago when I received that dreaded phone call. I have had many hurdles laid out in front of me over the past few months and have done my best to take each one as it came, focusing all my energy on crossing that one specific hurdle, before looking onward to the next. It is the only way for me to do it - the only way to survive without being swallowed up in a sea of overwhelming worry and fear of the unknown. Taking one day at a time is the way I try to live my life now. Worrying about the next hurdle in my way only deters me from living in the moment and enjoying this day that God has given me.
So, when people ask me if I have been a nervous wreck about my upcoming surgery, the answer is definitely "no". I have not been worried or scared or fearing surgery. I have been busy doing a million other things and enjoying feeling good throughout these past few weeks since I have completed chemo. But once again, my life as I now know it, is about to undergo another major change. And now that this change will be taking place in less than 24 hours, I would be lying if I said I wasn't starting to get a little nervous about it.
I knew chemo would make me feel crappy but that would eventually pass - and it did. I knew losing my hair would be traumatic but that it would eventually grow back - and it did. I knew that losing my eye lashes and eye brows would look weird, but that they would grow back - and they did - although they are now falling out again! Darn it. ;) But there is no turning back with this. This is the first real permanent step. When it's done, it's done - and there is no coming back. I am nervous about how I will look, how I will feel, how I will adjust psychologically to losing such an obvious part of my body. But what I really keep thinking about is, "Will it ever feel the same again when Mike hugs me?" Every day before Mike leaves for work, he gives me a hug while I lay in bed - every evening when he gets home, he gives me a huge hug as soon as he walks into the house. It's the way we have always been. And now I fear that the numbness and loss of sensation that accompanies this procedure will rob me of fully feeling my husband's embrace every day. Logically I know that it's not the end of the world if I lose sensation across my chest - but I have learned to really cherish the little things, like the tight squeezes from Mike -and the thought of those hugs never again feeling the same, makes me sad.
Tomorrow morning I will be undergoing a right modified radical mastectomy and a left simple mastectomy followed by immediate reconstruction. I won't go into detail about the actual surgical procedure but if you would like to read more about what a mastectomy is, please click here, and to learn more about reconstruction, click here. The surgery will last about 4 1/2 - 5 hours which will involve my breast surgeon, Dr. B performing the bilateral mastectomy followed by Dr. M, my plastic surgeon, coming in after her to start the reconstruction process. There are a few reconstruction methods available, however a few of those did not end up being viable options for me. I do not have enough abdominal tissue to use my own skin, fat and muscle for the reconstruction, which is what occurs during a TRAM flap procedure - the most common type of breast reconstruction. Therefore, after discussing all options with Dr. M, we have decided that the best course of treatment for me is reconstruction with implants. The process is a long one, and not without risks but we are confident that this is the right path for me. To give you a better idea of what will be taking place, here is a rough outline of the steps involved:
Soooo.....do you see what I mean about taking one day at a time? It's just too much to think about otherwise. There are some definite risks to all of this, especially once I have radiation. There is about a 20% chance that the radiation could cause the tissue expander to fail which means I would have to have surgery to remove them and my only available option for reconstruction at that point would be a much more invasive and difficult surgery. Although I am very confident in my decisions and feel in my heart that this is my best course of treatment, it is not without risks and fear - I hope and pray everything goes as well as possible and that we can stick with our game plan.
I am asking once again for all of you to rally around us in love and prayer, just like you always do. Please keep all of us in your prayers - not only for me to come out of surgery safely, but also for Mike, Mom, Doug and Jeff as they will no doubt be worrying while they wait to make sure I am okay. Please say extra prayers for Dr. B, Dr. M, the anesthesiologist, nurses, and all other staff that will be part of my surgery and recovery.
Thank you so much for the frozen meals, comfy clothes, cards, and well wishes that so many of you have sent during these days leading up to surgery. I truly feel your love and support all around me and that's what will get me through this.
ps. Today is National Metastatic Breast Cancer Awareness Day...there is still such a long way to go to research a cure and more effective treatments for this disease. To get a small glimpse of what metastatic breast cancer is like for the 155,000 of us living with it in the U.S please take a look at this short video
I was hoping to leave you with some gorgeous fall pics of my neighborhood but sadly yesterday's rain washed most of the leaves off of the trees. So instead, here's a look at my festive porch :)
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