Yesterday, I was introduced to NED! "No evidence of disease"!!!!
I saw Dr. F for my results of my latest round of scans and immediately burst into tears when they told us that the scans looked great and that I was still boring just like 6 months ago. :) But, what shocked me even more was the fact that the bone scan said there was no evidence of metastatic disease in my bones! Well, hello there NED!!!! Now, let me please explain that Dr. F doesn't put a whole lot of stock in those words. He said he doesn't get "overly excited or impressed" and that these scanning machines are not perfect. He says it's much like looking down from an airplane and trying to see a dandelion in a field. It's near impossible to spot just one but if there are a lot of them in a big patch, you can see them easily. So, he basically means I still could have little isolated cancer cells in my body but right now there isn't enough of them to be detected on the scans. I have always understood this and I am okay with that. I understand that sometimes people hang their hats on "NED" and then they have a scan a few months later that shows a change and they have a huge let down after feeling like they were as close to "cancer free" as possible. I truly understand that and I have always been happy to hear that I am "stable"...but for right now...for just a few days (or months)...I am going to be extremely thrilled that I am hanging out with NED! I know it doesn't mean I am cancer free or that I am cured. It means that right now my medicine continues to work and keep me in remission. It means that I can continue with my current treatment. It means that my bones, although still damaged, are healing. And most importantly, it means that I can continue having a really amazing quality of life. The few side effects I experience from my meds (hot flashes, fatigue, joint aches) are so minimal in the scheme of things and I don't let a day go by where I am not grateful for that. There are still little things we will keep an eye on. My platelets are on the low side and I have been having a lot of issues with bruising. If those continue to drop, I will have to have a bone marrow biopsy to see if my meds are impacting my body's platelet production. There are a few other minor issues I have been having but nothing big and nothing that Dr. F is really worried about. THANK YOU, THANK YOU, THANK YOU for all of your support, love and prayers! I couldn't be happier and couldn't be more grateful. I do believe in the power of prayer - I believe in God's ability to work miracles and I am not giving up the faith that maybe there is one in store for me. It has taken me this long to truly be able to even put those words out in the universe, but maybe - just maybe, I could live a long, healthy life in complete remission without this awful beast robbing me of my future. For now, I am believing that this can happen for me and I will continue to fall asleep each night with a smile on my face...dreaming of NED. ;) With a grateful and overjoyed heart, Meg xoxo
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New favorite word #1.....STABLE! The scan results are in and everything looks good! Stable...no evidence of active disease...nothing new...continued healing of the affected spots throughout my spine. Can I get an "AMEN!".....Woohooooo!!!!!!!
Second favorite word..."Boring". That's what Dr. F called me today and I take that as the biggest compliment I have received in a long time. I have yearned to be "boring" - medically speaking, anyways. Although Dr. F doesn't get all excited and enthusiastic, he did express his satisfaction with these results and said we will just keep the course since it seems to be working well and keeping my disease dormant...and that's what we are hoping and praying for, for a long long time! No other real news to report - I will continue with my two injections into my abdomen every 4 weeks, follow up with Dr. F every 8 weeks and continue to be scanned every 6 months. I wish there were better words for me to use to truly convey my appreciation and gratitude to all of you for your love, support and prayers...but really there is nothing else I can say except for a HUUUUGGGEEEE, "THANK YOU!" Thank you so very much for everything. Truly. You have no idea how much comfort and hope it brings me to know so many people are thinking of us, praying for us, and supporting us. It really does make a huge impact on Mike and I, and I hope you all know how immensely grateful we are. What an incredible start to 2013! If these results are any indication of what this year has in store for us, I think it's going to be an amazing year. Happy New Year to all of you and I wish you all nothing but health and happiness in 2013! xoxo, Meg I'm having a tough time getting into the Christmas spirit this year. I don't know why or what that's about. I think I just feel tired. I keep waiting for the day that the fatigue is gone, but it just seems like I will never feel the way I once did. Maybe I just need to come to terms with that, huh? Everyone keeps reminding me that it's normal to feel this way and that my body has been through so much - and I know all of that - it's just frustrating at times. Dr. F says that for every round of chemo you have, you can expect 1-2 months of fatigue....so, 15 rounds of chemo x 2 months of fatigue/round = 30 months! 2 1/2 years of lingering fatigue - sheesh! I know things could be worse and I don't mean to complain, there are just times where feeling this way starts to bum me out. It has been very hard to come to the realization that I just can't do things like I could before. It has hard to realize that putting in just a 6 hour work day can leave me feeling totally drained. It makes me wonder, if we were somehow able to have children one day - would I truly be able to care for them the way a good parent should? It breaks my heart a little bit to think the answer to that question might be "no". When the fatigue really sets in, he seems to bring along it's good friend "Ms. Extra Emotional". I am just feeling a little bit more emotional and anxious than normal, but I am sure that also has something to do with the stress of the holidays and the fact that my scans are coming up next week. It seems like I am feeling more nervous about my scans this time, but I am sure I have felt like this before every other round of scans too. I feel a little scared that if they don't come out good, I will blame myself and beat myself up for it. I have felt so tired lately that I haven't been working out and I haven't been cooking and juicing as often as I usually do. I have still been eating pretty healthy, but we have definitely been indulging in some treats over here. I am well versed on how diet and exercise can affect my disease, and although I don't obsess over it, I have been beating myself up about it lately. I don't want to put blame on myself if my disease does end up progressing, but right now, I am worried I might feel that way. There seems to be some misconceptions out there about what life is like once you are diagnosed with cancer - and I admit, before I was in this position, I was guilty of believing many of them. Like you have maybe a rough year or two and then your treatment is over and life is just exactly how it was before. Story over. Happily ever after. Period. Well, even though I have been blessed with good scans and haven't required changes in my treatment plan, life just isn't ever the same. There are always hurdles (big and small) that no one can prepare you for. I am guilty of thinking my friend, Meredith (who also lives with cancer) must have always been doing so great because "she looks wonderful in her pictures on Facebook". Ugh. How many times do we hear, "but you look so great" even though we might not really feel that way. Yes, I am thankful that I don't look exhausted or look like I have a throbbing back ache but that doesn't mean that those things aren't happening. We just don't post pictures on the days were we might look and feel pretty rough. I guess that's why this transition has been so difficult for me. Although I knew this wasn't going to be one battle, but rather a very long and continuous war - I must have still thought that once the initial blast of chemo/surgery/radiation was over, that I would feel perfect again. I didn't expect to battle this much fatigue for so long. I thought I would be able to work more by now. I thought I would be able to clean my house, run errands, and cook dinner without my back throbbing by the end of the day. I thought I could go back to getting 7 hours of sleep and that I would wake up feeling rested - rather than experiencing burning eyes, body aches and exhaustion from the moment my alarm goes off. I am hard on myself. I admit it. But that's just who I am. I have always held myself to high standards and have been able to accomplish anything I want - and this is a tough pill to swallow to not have any control over how this fatigue continues to plague me. Does it completely limit me and diminish my quality of life - no, definitely not. I continue to be busy and fill up my social calendar like crazy because I refuse to just lay down and hibernate. But, it's frustrating nonetheless. I know I have said this many times, but I am truly BEYOND thankful for Mike. The bottom line is that I couldn't do this without him. When my back hurts, he massages it. When I am exhausted, he grocery shops, cleans the house, does the laundry, cooks dinner. When I am beating myself up emotionally, he reminds me to be gentle with my broken heart and spirit. He is everything to me. I also want to give a little extra thanks to a few of my amazing friends. You know who you are -- the ones that shoot me a quick text to see how things are going or to say they are praying for me, the ones that make the effort to make plans so we can spend time together, the ones that let me talk their ears off on the phone or when we get together - even if it's about sad things like this damn disease. I truly feel so blessed to have such amazing, inspiring, and thoughtful friends in my life. Please keep my family and I in your prayers this next week as I head in for my scans on Wednesday morning. It will no doubt be a bit stressful, but I pray that we are learning to navigate these waters with a little less anxiety and fear than we have in the past. I won't get my results until January 3rd. I could have tried to get them earlier before Dr. F goes on vacation, but I wanted to enjoy the holidays without the fear of bad news. So, please pray that we are too overcome with the holiday spirit and joy of being surrounded by family and friends to worry about these results. Thank you for your continued love and support. xoxo, Meghan Addendum 12/14/12 - After going back and reading this post, I just want to add that I do feel very good most of the time. And, I don't mean to complain. It just so happens that I usually feel the urge to blog when I am a little bit emotional. It always helps to release my feelings and emotions this way but I hate to sound like I am complaining so much. I am grateful that I feel as good as I do and that I have a great quality of life - despite the annoyance of the fatigue. Thank you for understanding and bearing with me as I try to relay the realities of what my life is really like, while also expressing my gratitude for the many blessings that I know I have. And because a post is always better with pictures....a quick glimpse into my recent happenings over the last couple of weeks, courtesy of my lovely iPhone.... 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. xoxo, Meg A little peek at what I am most thankful 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. xoxo, Meghan 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! xoxo, Meg 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. xoxo, Meg 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!
As we settled into bed on Wednesday night, I pulled out my trusty pink notebook that has been my constant companion since last March. "Okay, time to put our list together", I said to Mike. Thursday morning I had an appointment with my oncologist and per our usual ritual in the Malley house, we generated our list of questions and concerns for Dr. F the night before.
"Make sure to tell Dr. F that my last surgery was May 4th...tell him I just saw Dr. M on Monday and he gave me the green light to exercise my arms...I am back to work and it's going well...still bruising a lot, so how does blood work look?" And before Mike drifted off to sleep, he reminded me for about the 100th time, "please make sure to talk to Dr. F about your back." Ah yes, my back. The one thing that has been a trouble maker from the start. This is the area we have worried about from Day #1 when a questionable little spot appeared on those first diagnostic tests. I was heading into this appointment on my own this time so Mike made me promise that I would be honest with Dr. F about my increased back pain and the symptoms I have been having lately. So, I shared with Dr. F that I feel about 80 years old when I wake up in the morning. That my entire back feels achy and so incredibly stiff. I told him that I experience a dull achy pain throughout my thoracic and lumbar spine at the end of most days. And, I shared with him the terrifying and excruciating pain I experienced on Tuesday when I had severe muscle spasms throughout my paraspinal muscles while sitting at my desk at work. I haven't experienced spasms like that since last fall and it is just about the most painful thing I have ever felt. BUT, I also explained to Dr. F that I have been doing a lot more lately. I have been at the gym more, I have been busy with lots of photo sessions that require me to get in all sorts of goofy positions while photographing children. I told him that I have also been spending hours and hours on end at my desk editing my photographs and learning how to run a business. I told Dr. F that although my family has often suggested I get an MRI done, I don't have any interest in having my scans completed any earlier than originally scheduled. I explained that I have been looking forward to feeling "normal" and enjoying this summer without worrying about test results. Unfortunately, Dr. F really didn't see eye to eye with me on my whole "ignorance is bliss" theory. He decided to move my scans up so we can see what's going on. Logically, I am thankful that he is so attentive and proactive, but right now I am just feeling sad, scared, and anxious. Just when life was starting to feel more normal again, now I have to worry about this. It is so difficult to live this way - to feel all sorts of aches and pains and always have to wonder, is the disease causing this pain? Has my medication stopped working? Does this mean the cancer is spreading? It leads you down a dark and awful path to "Worryville." There is not a doubt in my mind that the psychological and emotional aspects of living with cancer far outweigh the physical ones. The roller coaster of emotions is just relentless and the hardest part is knowing that I will never be able to get off this awful ride. The timing seems like it couldn't be worse. My closest friend with metastatic BC just found out a few days ago that she has had a serious progression of her disease, after being stable with no evidence of disease for the past year. She has been scanned every three months and it's absolutely terrifying to me to think that so much can change in such a short period of time. It has been so hard to think of what she is going through and watch her grieve this news, and experience all of those emotions that we both felt when we were first diagnosed...fear, worry, doubt, doom, disbelief. I can't help but put myself in her shoes and wonder if I will have a similar fate. Will we have to start a new treatment plan? Will I have to have chemo again? Will my quality of life be as good if I am on a new medication with different side effects. I try so hard not to worry, but it is nearly impossible to not have these thoughts race through your mind. I wasn't prepared for this. I thought I would have until the end of August to have my "scanxiety" kick in and all of a sudden, it's upon me. I couldn't stop crying last night and feeling overwhelmed and scared. Today, I am still feeling a little down but I am trying to be very hopeful and optimistic that everything is fine, but all the "what if's" are terrifying nonetheless. I am begging for your prayers. Prayers that my spine is just as healthy (if not healthier!) than it was when I was scanned in February. Prayers that my current medication is still working and I can maintain my good quality of life. Prayers that the aches and pains subside in my back and that it is simply a result of increased activity. And especially, prayers to help me remember that every day is a blessing - that I am able to remain grateful - and that I am not consumed by fear and doubt. Thank you so much! I will be having my full body bone scan and spine MRI on July 2, followed by a chest/abdomen/pelvis CT on July 6. I will have to wait until July 12 to see Dr. F for my results since he is only at my clinic on Thursday's. I will definitely keep you all posted. xoxo, Meghan ps - please keep my stepdad, Doug and his siblings in your prayers as well. Doug lost his sweet and thoughtful dad last night, after leading a wonderful life for 95 years. I know this will be an extra difficult Father's Day for them this year. Thank you for being a great father figure, Doug. Happy Father's Day to you! And Happy Father's Day to my wonderful father in-law, Mike. We are so grateful you are feeling better. Love you! I guess once I had a taste of the sweet freedom after surgery, there was no keeping me down any longer. Ever since the nausea and soreness settled down, it seems like life has returned to it's usual hectic pace. No complaints here though - that's the kind of life that feels most 'normal' to me anyway. And I will always be grateful to be busy since that is a true indication that I am feeling good! A belated Happy Mother's Day to all of you amazing mommas out there! I was able to spend that day hosting brunch for the fam over at our house and then heading out to GG's to celebrate with her, my aunts, uncles, and cousins. There aren't many things I can say about my incredible Momma that I haven't already gushed about in previous posts. All I know is that I would be lost without her, and Mike and I are beyond grateful to have her in our lives and help support us through all of the ups and downs of the past year, in particular. She deserves much more recognition than one special day allows! We love you Momma! ♥ I am also so grateful to have some other pretty amazing women in my life too...especially my grandma GG, and my Godmother, my Aunt Carol. Happy Mother's Day to you both, too! Love you! Last Monday, I had my first follow up appointment with Dr. M since surgery on May 4th. He was pleased with how everything looks and how I have been feeling. Of course, I had to badger him and ask if I can please get back to working out and doing everything around the house that I want to do. He gave me the green light to go back to the gym but I am not able to do anything with my arms for another 4 weeks - no lifting weights, no pushing, no pulling, no picking up friends babies....oops, might have cheated on that last one a few times! ;) It is driving me nuts to not be able to do what I want, but I am trying my best to be a good little patient and make sure that everything heals just as it is intended to. Last Wednesday, I had the privilege of being invited onto the field at Comerica Park during the national anthem and first pitch at the Tigers Game. It was such a neat experience to join other breast cancer survivors as the Tigers honored us with their "Going To Bat Against Breast Cancer" game. I met up with some of my YSC friends there as well. We wore the shirts that the YSC team is wearing for the Race for the Cure - it's pretty astounding to see the ages of our diagnoses on our shirts! I was able to capture a picture of myself on the scoreboard of me taking a picture of the scoreboard! ha-sounds confusing, I know. Can you see where I circled myself in the pic below? Wednesday night at Comerica was a blast! Then first thing Thursday morning, I headed to Karmanos for my monthly injections into my abdomen. In addition to that, I was asked to participate in an interview with our local ABC news affiliate, WXYZ Channel 7. The super sweet and lovely anchor, Alicia Smith, interviewed me. She wanted to know my story and what I have been through, about why I wanted to help start a young women's support group, and why I participate in the Race for the Cure and what it means to me to have others support me there as well. It was a fun morning and one more way that I am trying to help raise awareness for young adults faced with cancer. I haven't heard when it will air but it's going to be sometime this week before the race on Saturday morning. Channel 7 will be interviewing me again live at the race with my entire team there with me! Here I am with Alicia Smith, who couldn't have been any nicer and made me feel much more relaxed on camera. The rest of the week and weekend was filled with many Kettering baseball games, a trip to Eastern Market for flower day, and spending time with two of my favorite munchkins - Emma and Alice. Luckily for me, I have some pretty cute models to practice my photography skills with. :) I also wanted to mention that a group of my wonderful friends are at it again this year and have formed their "Meghan Malley Rally" team for the 3 Day For A Cure event in August. I am so proud of them and honored that they want to dedicate their time and energy to this cause in my name. They are not only focused on supporting me, but on helping to generate more awareness for metastatic breast cancer and the importance for further research to help find a CURE! Their fundraising efforts are underway and if you like to bowl, and love to support a great cause, we have an event for you! Check out the flyer for more details and click here to visit their team page to either join our team or donate! I am not an official participant, but I will be out there attempting 10 miles each day, so come join us August 17-19! Keep your eyes out for me on Channel 7 news this week and come join us Saturday morning at the Detroit Race for the Cure! It is a wonderful event! Hope everyone is having a great week and have a fun Memorial Day weekend! xoxo, Meg ps. - I would like to give a very special thank you to Dr. Schenden and his staff at Schenden's Medical Day Spa. Last week I was completely blown away by a letter that Dr. Schenden wrote me. He told me that some of his staff have been following the blog and have been touched by my story. Dr. Schenden mentioned that they knew one of the "30 before 30" items I wasn't able to cross off my list yet was to get a massage for Mike. Well, Dr. Schenden so graciously sent us two gift certificates for spa services at his medical day spa! One for Mike, and one gift certificate for me too! It was so unexpected and I am so grateful. People often do not realize the impact that one little note, or one kind gesture can have. I was brought to tears by this act of kindness and I am truly so thankful that such compassionate and thoughtful people are out there in the world doing things to help brighten someone else's day. Thank you so much to Dr. Schenden and his staff - It truly meant so much to us! 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! xoxo, Meg |
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