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.
Hi-ya friends...the Malley household is hustling and bustling like the good ole' days lately. Mike is in full swing with the baseball season (pun intended...hehe), I have officially started a new business venture (which I'll fill you in on soon), and I have been super busy juggling all sorts of other things like meetings about returning to work and getting tons done around the house before my next surgery...which is in 8 days! yikes! It finally feels like we are back to a little bit of what life was like before I was diagnosed - full schedules involving both work and play, cooking & eating dinner together every night (and at the kitchen table - no longer eating while laying on the couch or in bed), and just enjoying feeling well enough to tackle all sorts of things.
I realized that my 30th birthday came and went without me ever wrapping up my ambitious "30 before 30" list. I will admit - I didn't accomplish everything. But I will say, it was a valiant effort and I will definitely continue to cross off the rest of my list as the year progresses. Here is how I fared....
I have some pretty big things coming up in the next week. This coming Sunday, April 29 is the Mid-Michigan Race for the Cure in Lansing. I am proud to be the "New Balance Honorary Survivor" of this years race and I will be speaking at the opening ceremonies on the steps of the Capital building. I am using this opportunity to not only share my story, but stress the critical importance of further research in the field of breast cancer. I think that Komen and other organizations have done a great job of spreading awareness - but it's time for more! We all know what a pink ribbon means. Now it's time to really step up our game and put our money where our mouth is and find a cure! I am nervous to be speaking in front of hundreds, perhaps thousands, of people but I feel like it is my responsibility to advocate for myself and the other men and women that are battling for their lives right along side me. Publicly speaking about myself and what I have been through is always an emotional thing for me so I am grateful that some of my close friends and family members will be there to support me. That truly means so much to me. The opening ceremonies begin at 1pm at the Capital in Lansing. If you would like more information, want to join our team, or donate to this cause, please click here.
The next big thing on the agenda after the Race for the Cure is that I will be having surgery next Friday, May 4. This is the next step in my reconstruction process. The surgery itself should only take a couple hours and I will come home that same day. I will share more details on that next week but needless to say, undergoing surgery is always an anxious time. I will once again be asking for all of you prayer warriors out there to start storming the heavens again.
In the meantime, here are some snapshots from my iphone to show you what I have been up to lately....weekly trips to the farmers market, lots of Kettering baseball games, new tasty recipes, juicing my veggies, roughly 30 or so pills every morning and then again at night, zoo trips with friends, doctors appointments, and babysitting our sweet Goddaughter...life is good!
Hope you all have a great weekend and that I see some of you on Sunday at the Mid-Michigan Race for the Cure in Lansing!
This week has been filled with all sorts of up's and down's which has led to this post being delayed a bit. It seemed like every time I would sit down to write, I would feel a certain way and when I would come back to finish it later, I would be feeling a completely new set of emotions and delete everything I had previously typed. So, where to start?...
We had a wonderful Thanksgiving, followed by a great weekend in Chicago to celebrate our friend Mike's wedding. We had a really fun weekend and it was nice to catch up with some old friends that we don't get a chance to see too often.
On Monday, I headed back to see Dr. M (my plastic surgeon) and after one more fill of my tissue expanders, he gave me the okay that we could be done with this step so I could move on to radiation. So, come Wednesday morning I was back at Karmanos for a couple hours getting all geared up to start this next leg of the journey.
I met with Dr. R (my radiation oncologist) for awhile to talk about how I have been doing post-surgery, and to go over all the potential risks and side effects of radiation. Oh you know, just the unavoidable scarring down of up to 1/3 of my right lung, potential demineralization of my ribs putting me at risk of fractures, possible rupture of my tissue expander, lymphedema, fatigue, and burning/scarring of my skin...just to name a few. No biggie, just another day in the life of a cancer patient...being constantly faced with choices that bring uncertain and potentially dangerous outcomes no matter which way you go. Radiation brings many risks, but I feel that lingering cancer cells pose an even greater risk...therefore, the choice is to let the radiation begin! I will have radiation treatments every single day (Monday through Friday) starting this Monday, all the way through the end of January. However, we have decided to hold off on radiating my spine at this point. This is a much more dangerous area of the body to radiate, and a place that we don't want to radiate unless we really have to. Right now, I am not really having symptoms of back pain due to my cancer. I have an achy and sore back most days, but it is more due to deconditioning and fatigue, rather than the metastases. So, for now we will wait and see how I feel and if the time comes when pain becomes a bigger issue, maybe we will radiate.
After meeting with Dr. R, I headed in for my CT simulation. This is when my radiation therapist and Dr. R used a CT machine to determine the exact location and size of the area to be treated. After a bunch of different marks and assessments, I received 4 permanent little blue tattoos to mark where the radiation beam would be directed at each of my treatments. My right chest wall will be the area radiated, so I now have one small tattoo under my right collarbone, one over my sternum, one near my waist on my left side and the last one near my waist on the right side. After this procedure was over, I received my usual monthly injection of Zoladex (the one that suppresses my ovary function), and also received my first injection of Xgeva, which is a bone strengthener that I will be getting every month from now on. Needless to say, when I left Karmanos on Wednesday afternoon, I truly felt like a human pin cushion.
Last Wednesday night, Dr. R called me which made me a little nervous to say the least. Luckily, all she wanted to tell me was that I needed to have some of the saline removed from my left breast so that it wouldn't interfere with the angle of the radiation beam. I knew that some of the fluid may need to be removed but I was completely shocked after leaving Dr. M's office on Thursday afternoon when they removed nearly half of the saline from my tissue expander. I had a "little" meltdown in my car while driving home - for the first time, I truly felt so sad about how I looked. I worked so hard to tolerate the quick expansion of my expanders and I felt that all of the discomfort I went through was for nothing. Now I am left with this stretched out skin and a deflated looking breast and it was just an emotional moment for me. I didn't realize how different it would look after having 150 cc's removed and for whatever reason, I just lost it. I rarely complain about all of the things my body has had to go through - how I have been poked, prodded, cut up and stretched. I know that it is not the biggest deal in the great scheme of things. But the simple fact is that sometimes it's just a lot to take. I know my dissatisfaction with the way I now look will only be temporary but sometimes I just need to let myself be upset and then I can move on and get over it.
Thankfully, immediately after pulling myself together from that appointment, I left to pick up my wonderful friend Meredith and we headed to our support group meeting. I always feel better after going to those meetings and it was just what I needed that day. We had five new people attend this time and I am grateful for the love and support each person brings to the group.
Friday I visited many of my old co-workers at the Rehab Institute of Michigan and it totally made my day to see them. I am grateful for the time I spent working there and the friendships I made because many of these women continue to be my biggest supporters as I go through this battle.
The real part of this week that has weighed heavily on my heart is hearing the news that a special friend of mine is not doing too well. This is a friend I have met along this journey, who is also battling cancer. We have so many crazy connections and similarities (not to mention we were born on the same day!), and she was diagnosed with advanced cancer just about a month after me. I have spent much of this week worrying about her, praying for her, and trying to remain positive about my own health while being faced with the devastating reality of what this disease can do to a vibrant, beautiful 29 year old woman like her. If you could please say some extra prayers for my friend and her family. Prayers for healing, decreased pain, strength, and peace as she bravely continues this fight. I would really appreciate it.
This upcoming week will be another busy one filled with daily radiation appointments, the start of therapy for my chest muscles and shoulders, holiday shopping, and a few special events in the evenings too. Please keep me in your prayers, because I know they are helping me each and every day. Although I make sure to enjoy each day and I am very optimistic about my future, it doesn't mean that there aren't daily struggles and it is your love, support and prayers that help me through those times.
Loved spending time with some of my favorite ladies the night before Thanksgiving
All dolled up with my handsome husband at Mike and Noreen's wedding! ....ps-can you tell the hair is starting to take on a life of it's own?!
My beautiful friend Julie and her husband Joe were at the wedding too - so glad we were able to spend some time in Chicago together. Love you, Poo!
Well, it looks like I am starting to return to the land of the living...(very) slowly but surely. I finally started to feel better this past Tuesday, and I couldn't be more grateful. It truly felt like it was never going to happen. Each day since then, I have started to feel a little bit better than the day before but it is amazing to me how drained and exhausted I feel even though I do nothing but lay around all day. It's the craziest thing and I have to try very hard not to let it frustrate me too much. I have never in my life spent this much time doing nothing, staying indoors, and actually staying in bed or on the couch all day. I can tell I am feeling better because I have started to feel very antsy and bored.
Last Monday I wasn't able to go to see Dr. M as I had hoped because my drains were still collecting way too much fluid to have them removed. I was super bummed but hopeful they would be out in the next day or so. On Tuesday, I headed to Beaumont to see Dr. R, the physical medicine and rehabilitation doc. He checked out my range of motion, measured me to make sure I wasn't showing signs of lymphedema, and we discussed the possible reasons why I had been feeling so awful. Overall, he said things looked good but unfortunately, I couldn't really start doing much movement with my arms until the drains came out. This is yet another reason that I have been frustrated by these suckers because the longer they stay in = the longer I have to wait to start moving my arms = the tighter my pecs and shoulders become = the more difficult my recovery will be to regain full range of motion and strength. But, I have tried to be patient and respect my body's healing process. This has been a tough one for me as I have often joked with Mike that there is no way I could ever be a teacher like he is because patience has never been my strong suit. ;)
Luckily, by Wednesday morning my left drain had really slowed down and I was able to get it removed. YAY! This means I can now lay on my left side without too much discomfort. I figured that the right one would at least be out by Friday, but unfortunately this bugger is still in and draining a lot! I can't believe I am going on 3 1/2 weeks since surgery and it's still in. I did receive my first fill of my tissue expanders on Wednesday in the hopes that it would slow down some of my drainage. Imagine having a balloon (but one that feels like an aluminum can) underneath your pec muscles and then having someone inject saline into it while you feel it expand within your chest. It's the oddest feeling - and not the most comfortable to be completely honest. I will continue to go in weekly for my fills for about 6 weeks until the tissue expanders are completely filled, at which point I will begin radiation. So, I am planning on heading back to the doctor tomorrow in the hopes of receiving another fill to slow down this drainage. The theory is that the fluid will continue to collect and drain as long as there is space to do so - if we fill that space by filling the expander, then the drainage will hopefully slow down.
I also had to head over to Karmanos' Weisberg Center on Wednesday to get my monthly shot of Zoladex (the med that shuts my ovaries down and puts me into premature menopause). While I was there, I helped represent breast cancer patients as the Detroit Red Wings presented Karmanos with a check for the money they raised during their Breast Cancer Awareness Game. Former Detroit Red Wing, Chris Chelios was there representing the Wings, in addition to Nick Karmanos, Vice President of Karmanos Cancer Institute. Myself and two other young breast cancer survivors posed with Chris and Nick while holding a banner signed by the entire Red Wings team and hundreds of fans. We were photographed and interviewed by our local ABC and FOX affiliates. Unfortunately, I missed the clip of us on the news that night but some of my friends caught it. It was a fun thing to be a part of and neat to meet Chris Chelios.
I have continued to battle fatigue since the surgery, so the rest of the week was spent laying pretty low. A few visits from friends was really nice and helped distract me from these walls that I feel are closing in on me. On Saturday night, I finally busted out of the house for the first time in 3 weeks for something other than a doctors appointment or support group meeting. Mike and I headed to the movies and it was so nice to just have a change of scenery for a few hours, and go on a date with my cute husband.
I am hoping to head back to Dr. M's office tomorrow morning to get another fill for my tissue expanders which will then hopefully slow down the drainage...keep your fingers crossed! I want to give a special thank you to Aunt Bridget for driving me to my appointments this week and for sitting outside with me after I realized I locked myself out of the house. :) Also, to my wonderful next door neighbor, Teri for cleaning up all of my flower beds in the backyard. She spent this afternoon pulling weeds, cutting back perennials, digging up my annuals, and sprucing everything up - it looks wonderful and I am so grateful since I can't get out there and do it myself this fall.
I truly appreciate all of the well wishes, words of encouragement, and prayers I have received over the past couple of weeks. This has been one of the most difficult times I have had along this journey since my diagnosis. I am grateful to be feeling better but it's an extremely slow process and it's a huge reminder that as strong as I think I am, that can change in the blink of an eye.
I hope to update you all soon with nothing but good news of healing and the removal of this last pesky drain!
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 :)
My blog to keep you all