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.
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....
I am being 100% truthful when I say that there has not been one moment throughout these last 15 1/2 months where I have asked, "why me?". I have never said, "this isn't fair", or had a huge pity party for myself. I have had my fair share of sad (okay, even devastated) moments, or times where I felt a little angry, frustrated or discouraged but I have never let it suck me down that big black hole of despair for very long. I have held tight to the faith that God has a plan for me, and although I may never understand it, He is watching over me and wants the best for me. I have spent more time working on my relationship with God since the day I was diagnosed. We had a little heart to heart where I said, "Hey, remember me?! I could really use your help right about now!"
There have been many "coincidences" along this road which I now don't believe were coincidences at all. There have been people that have been brought into my life for very specific purposes at seemingly the exact perfect time I needed them. There have been so many scary and stressful moments where I have been shocked at the sense of calm and peace that I felt come over me. It is in these times especially, that I know God is with me.
Although I was raised in the Catholic church, I found myself distanced from it the older I became. What always seemed to cause me frustration and confusion, and ultimately my lack of participation within the church, was the question of, "if we have an all knowing and all loving God, how does he let such bad things happen to such good people?". I have struggled with this thought since I was a little girl and it has always been a huge source of internal turmoil for me.
I am truly thankful for a few very special friends that help me work through these thoughts, and who share with me their thoughts and beliefs which have helped me understand that God does truly want whats best for me. He is not punishing me through this cancer. But, bad things do happen - and that is just life. I have been finding more peace lately by putting my trust in God and I am sincerely grateful for that.
With that said, it doesn't mean that my faith doesn't waiver. Traveling this road ultimately leads to many moments where it is hard to have faith, where it is hard to remember that God is with me, and where it is a challenge to focus on my blessings. The past week or so has been an true example of this.
Aside from having my scans completed last week and knowing those results are looming over my head, there have been a few other things going on in my personal life that even on their own would be devastating and difficult to get through - let alone all combined at the same time, on top of everything else we have already been dealing with. I had a few days of deep sadness, frustration, and confusion as to why so much could possibly be piled onto our plates right now. Why have I been through so much already at just 30 years old - more than many people go through in a long lifetime? These thoughts led to an impromptu pity party where I was the guest of honor. But, ultimately I needed to throw that party. I needed to let myself break down, release the tears and cries, and with that, release my worries, frustrations and fears to God.
I have come to truly detest the saying, "God doesn't give us more than we can handle" - I just don't believe that. I believe so many of us go through times where it is too much to handle, and that's when we need to rely on Him.
As the dust has settled over the last few days, the clouds of that deep sadness have lifted a bit, but I know I am headed straight into another potential storm on Thursday. I am praying (more like begging) for good news. I could really use a break right now - I need it more than ever.
Thank you for your continued prayers and words of encouragement. That is what helps me get through these difficult times. And thank you to those of you that have prayed for my Aunt Helen. She was taken off life support on Friday but is continuing to hold on. I am asking for prayers that she is able to let go, give her body the rest it deserves, and return to her family in Heaven who await her.
I will post on Thursday after my appointment with hopefully nothing but great news!
***REMINDER - There are TONS of great fundraising events happening to benefit the 3 Day team as they each try to raise at least $2,300 for the Susan G. Komen 3 Day For the Cure. Please check out the details and attend if you are able!
First up, Zumba this Friday night....
THIS WEEKEND - HUGE Garage Sale at Becca's house. Lots of great stuff - not your average garage sale finds! Please visit 367 East Saratoga Street in Ferndale from 8-3pm on Saturday and Sunday.
Next Thursday, July 19th - Fundraiser at Rosie O'Grady's in downtown Ferndale. Please join us starting at 6pm for all you can eat pizza and salad buffet out on the front patio for just $15. There will also be a silent auction and 50/50 raffle. Please pass this invite along to all your friends and family - it will be a great time!
The following week, come join us for some yoga!.....
We are also continuing to sell the adorable kids apparel as well! Please contact me for orders or you can place an order directly from Brinley's website at
http://littleonesforacure.blogspot.com. The onesies are available in 12, 18 and 24 months (special order at no additional cost, 3, 6 or 9 months) and the t's are available in 2T, 3T and 4T sizes.
If you would rather make a donation directly to the 3 Day team, please visit the link here.
and pick a team member to donate to. Thank you for your support!
Last but not least, my dear friend Kyle is once again participating in the 30 mile Ride For the Cure in Ann Arbor on August 4th. Please consider helping her reach her goal by donating here.
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.
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!
Could you hear the sound of my huge exhale this morning?! I think I let out the biggest, loudest sigh of relief I have ever experienced in my life. The scan results were great - thank you God! I am so grateful, so relieved, so over the moon with hope and optimism.
Leading up to this day, I had been feeling an odd sense of calm about these results. Of course there was a part of me that was nervous, but it was different this time. I felt such a sense of peace and faith that no matter what Dr. F told us, it would be okay. If the results weren't what we hoped, we would figure out a new path and continue to travel down it with just as much determination as we have up to this point. But then my back started hurting a little bit - and the nerves started to set in a little. My back had been feeling great but it started to feel a little more achy and stiff the past few days and I started thinking, "oh my God, is this a sign that it has spread throughout my bones?" Mike reminded me that we spent many hours sitting in uncomfortable conference chairs in New Orleans and then walked 5 or 6 miles a day as we explored the Big Easy. But, I couldn't help but worry that it was a bad omen.
Even still, I felt good this morning - I felt calm and pretty relaxed heading into my appointment. That was until Dr. F walked into the room. Last time, he walked right in and said, "your scans look good". Boom - good news right off the bat - then I could breathe. Well, this time he walked in looking more serious than normal. Immediately, I looked over at Mike and felt worried. He proceeded to ask me about my symptoms and how I was feeling...why is he asking me this first? Does that mean things are worse? What isn't he saying? He then asked about New Orleans and we chatted about the conference, he did a full physical exam and it wasn't until about 8 hours later (or so it seemed) that he finally sat down on his stool and said, "the scans look good". AHHHHH.....I can breathe! And then the floodgates opened. I couldn't help but cry - for the first time ever, I cried in front of one of my doctors. Tears of joy, tears of relief, tears of gratitude.
Overall, the scans showed no new evidence of disease. The medications I am taking are continuing to keep the cancer under control and prevent the further spread of the disease. The spots that have been visible on my spine continue to show evidence of healing. I can continue to stay the course and keep doing what I am doing. THANK YOU GOD!
Thank you to all of you for your continued prayers, cards, emails, texts, etc. I truly believe in the power of prayer and I feel so blessed to have hundreds of people around the country (and some even around the world), praying for me and my family and sending us positive thoughts and well wishes. I can never say enough how much it means to us. I am not only celebrating this news with Mike and my mom, Doug and Jeff - but with my extended family, my friends, and each and every one of you that has followed my journey and kept me in your thoughts and prayers. Thank you so much! Life is good - have a wonderful day and take some time to be grateful for all the blessings in your life!
ps - I haven't had time to go through all my pics from the conference and New Orleans yet. I took over 500 of them! But here are a few quick shots from my iphone :) We had a wonderful time in New Orleans and I can't wait to tell you more about it soon!
Let the "scanxiety" begin....ugh, it's that dreaded time of year when I get all my scans redone. I try very hard to remain calm, optimistic and hopeful - but let me tell you, it's pretty tough. I have come to realize that this scanxiety is something that will never go away. It doesn't matter how many times I have a good scan - the worry, doubt and fear all come creeping back in when it's time to be scanned again. Although I like to focus on how wonderful it will feel to get news that I am still in remission, that I can stay on my current treatment regimen, and that everything I have been through is paying off - I can't help but be terrified of the alternative. That the cancer is active again, that it's spread, that my medicines are no longer effective, that it's infiltrated my liver or brain.
My wonderful friend Meredith has taught me to try to think of the worst possible scenario and how I would handle that, and what would our plan be. That way, it takes away some of the fear of the unknown and you can try to help prepare yourself in some way should that be the news you receive. I have been spending some time thinking about this lately and trying to think about how my life could once again change in an instant when Dr. F delivers my scan results. Would I have to start chemo again? Would I need more radiation? Do I need to start new medications? What would the side effects of those be? Do I need to look into clinical trials? Last night as Mike and I laid in bed, I asked him that very question -"What would we do if the results show it has spread?" His response is just another example of why I am so blessed to have him love me. Without hesitation, he simply stated, "We would do anything we had to do to get you better."
Over the course of these past 11 months, I have been slowly adjusting to living a life with cancer. I have come to understand that I will deal with this disease and its effects in one way or another for the rest of my life. Fine - no problem - I can do that. I just want to remain stable. I pray that the disease is still stable, and that I can continue living my life as I am right now. Aside from a few minor things, I have very little side effects with my current treatment plan. I feel good about 90% of the time. I am enjoying being back at the gym and back to yoga classes. I look forward to returning to my job after my next surgery. I am able to travel and spend time with family and friends without worrying too much about how my body will hold up. So, I can't help but worry about these upcoming results changing all of this for me.
I used to say, "okay, I have cancer but hopefully I won't lose my hair", and then it went to "okay, I have to lose my hair but maybe I won't have to lose my breasts." Then it once again changed to, "well, I have to lose my breasts but please just let me still be able to have children." Sadly that statement was forced to transform once again into, "well, I can't have children but please just let me be stable and lead a long life with Mike." And of course "stability" is what I truly want - if I can't be cured (although I do still believe in miracles!), then I pray for stability - for a long, long time. But it all truly boils down to one thing - I can (and have) given up so, so much - and I would gladly do it again in a heartbeat if I knew it would allow me to lead a long and happy life with the people I love. But you see, no one can make such promises. None of us know what our future holds and how much time we have. The difference is that I never used to worry about dying before - I took it for granted that not everyone is afforded a long and healthy life like I assumed I would have. So, I have to make the conscious decision to try to release the worry and fear and give it up to God because I am not the one in control. All I can do is continue to live each day to the fullest and be grateful for each day.
With that said, I would sincerely appreciate as many prayers, healing thoughts, and uplifting words as you can possibly share right now. These times are very tough- not only myself, but for Mike, Mom, Doug and Jeff as we all anxiously await the results. Please pray that this disease is still in remission, that my spine is healing, that my organs are free and clear of disease, and that our anxiety and worry doesn't consume us while we wait for the results. My tests are scheduled for this Tuesday and Wednesday and we won't receive the results until the following Thursday, which is March 1st. You have no idea how much your prayers, thoughts, and comments help lift us up and keep our spirits high during these times!
Thankfully, Mike and I will have a great distraction from my scan results. We leave for New Orleans on Thursday morning! We are actually going to attend a breast cancer conference but we will have plenty of extra time to just enjoy the city on our own. We are such great travel partners and always have the best time when we are exploring somewhere new with each other. Exactly one year ago was the last trip we took by ourselves when we visited Seattle just a few weeks before I was diagnosed. Check out some images from our trip here. We had the best time and I am sure New Orleans will be no different!
Friday evening through Sunday morning we will be attending the Annual Conference for Young Women Affected by Breast Cancer. Young women under the age of forty come from all over the world to attend this conference. There are excellent guests speakers, many of which are leading researchers in the field of breast cancer. There are numerous break out sessions dealing with everything from integrative medicine, an update on the latest metastatic research, and even sessions solely for male caregivers. We are both looking forward to learning a lot and I also hope to meet other young women with metastatic disease such as myself.
Of course, we will find plenty of time for some beignets at Cafe du Monde, grabbing a great cajun meal, and checking out the sites of the French Quarter. We are really looking forward to it. Thanks in advance for all of your thoughts and prayers for my upcoming tests - I will be sure to update the blog next week once I get the results!
My blog to keep you all