There is no doubt about the fact that cancer is one sneaky beast. Lurking in the darkness. Slowly creeping up through the shadows and rearing it's ugly head at any time.
I have always known this. I have lived this while watching relatives and friends face the disease before I did. But it is another thing altogether when cancer sinks its fangs into you.
I have been neglecting the blog so much over the last couple of years because truthfully, all has been relatively stable for me since my recurrence at the end of 2014. Life has been full and busy - just like I have always liked it. Work, photography, travel, family, pups, friends, cooking...fitting as much into each day as possible. This summer I was feeling the best I have in years. One of my bff's and I devoted ourselves to a morning bootcamp class before work and I faithfully attended for about 12 weeks. It felt so good to finally feel more like myself - energized, strong, and comfortable in my own skin. It never ceases to amaze me how quickly that can all change.
On September 15th I awoke around 2am to excruciating back pain...the kind that is impossible to describe unless you have experienced bone pain from cancer. I have felt this before and know it all too well. I felt like my back was going to shatter in a million tiny pieces. I woke Mike up and asked him to please try to rub my back in the hopes of some relief. To make a long story short, after suffering through the work day and barely getting through it, I ended up in the ER that night. This started a cascade of events which have led to where we are today. At the risk of skipping some details, but saving some energy, here is the "highlight reel".... ;)
-Completed bone scans, CT scans and spine MRI's the last week of September
-Learned on Sept 29th that I had progression in my spine at multiple levels which also caused my T8 vertebrae to be fractured
-Underwent high dose radiation treatments to my spine every day before work for two weeks which concluded on October 14th
-After initially only feeling some fatigue and slight nausea, I encountered severe side effects the week after radiation ended. My esophagus was an innocent bystander caught in the crossfire of radiation and the damage was unexpected and extremely painful. It was not a sore throat due to the radiation burn that you would expect. It was more like trying to swallow glass through a tube that had narrowed down so tight that even water caused ridiculous pain and coughing. It become so bad that I avoided food and liquid altogether; resutling in a 8 pound weight loss over 4 days, along with severe exhaustion and overall feeling like crap.
-Could finally start eating towards the middle/end of last week and have been feeling MUCH better!
So, that brings us to today. I went in this morning for a follow up with Dr. F, my oncologist. It is too exhausting to detail right now but basically, I thought he wanted to stay the course on my current treatment because it has been keeping the rest of my body free from disease and limiting the disease to my spine. I was taken by surprise this morning when he immediately stated he wants to switch my treatment plan completely to two targeted therapy drugs. I had been feeling in my heart that it was time to switch treatments but I guess I just didn't expect it today and I wasn't prepared. It unleashed a flood of emotions and uncertainties about the future....
What will these side effects be like? Will this change my quality of life? Will I be able to maintain my normal busy schedule? Will I feel nauseous? Fatigued? Lose/gain weight? Will this work and for how long? What if I have another progression soon and blow through yet another treatment option? What if it doesn't keep the disease limited to the bone? What will happen if this fails?
I have been beyond blessed these last 5 1/2 years to maintain a pretty great quality of life despite all I have been through. I don't want to lose that. I don't want to start to head down that road of jumping from one treatment to the next because things have stopped working. I don't want to hear, "there is nothing else we can do for you". I learned tonight that another young friend with MBC was just told those exact words yesterday. She has entered hospice and it's just heartbreaking.
The other tough part of today was making the decision to finally have my ovaries removed. My disease is fed by estrogen so my ovarian function has been medically suppresed since I was first diagnosed...first through chemo and immediately following through that lovely shot of Zoladex I receive every single month. Dr. F has always said that there is no real difference between the Zoladex and having my ovaries surgically removed. I told him to tell me point blank if it would better my chances for survival to have them removed and he said the research can't prove that. So, we decided to stay on Zoladex and not rock the boat by having surgery.
Well, today he finally said, "If it was me, I would have them out." That's all I needed to hear. I know it will be a pretty straightforward laproscopic procedure, and I am not worried about the surgery itself at all. But it just feels like another huge punch in the gut. Another glaring reminder of all that cancer has robbed from me. I feel like I have been dismantled piece by piece of all that makes me a woman - the loss of my hair, my eyelashes, my breasts, my ovaries, my ability to bear children. It is a pain that runs so very deep and having my ovaries removed opens that wound up...a wound I have tried so desperately to close up and allow to heal.
My new treatment plan will consist of two new drugs I will write more about later. They are extremely expensive so I have to wait to start them until I receive insurance authorization and I don't know when that will be. I will take an oral pill daily for 3 weeks and then have 1 week off, then repeat. The other drug is an intramuscular injection that I will receive in the good ole' tush. I will receive it every 2 weeks for the first 3 rounds and then every 4 weeks after that.
There are side effects of these new drugs that are highly likely, including a significant decline in my blood counts which will place me at high risk for infections as well as cause fatigue. There are many other possibilities but these are the most likely. I will have blood work completed every 2 weeks to make sure my counts stay in a range that is safe enough to receive the treatment.
So this is where we are, friends.
This is the plan until this disease starts crawling back up from the darkness and threatening to rock our world once again. But, with each attack it wages, I will beat it back down and chase it right back into the shadows...running it out of the sunshine where I choose to live my life.
Please keep me in your prayers. I am feeling a bit overwhelmed and down right now, which is not a place I like to be. Please keep Mike and my family in your prayers. Spefically, please pray for wisdom for our medical team to help us to make the right choices for my care; for strength to endure whatever may come our way; and for faith and perserverance while remembering that we are in God's hands and are loved and cared for every step of the way.
I promise to write more soon and keep you all updated.
Thank you for always being the most incredible support system anyone could every ask for. It is appreciated more than you will ever know!
Here I am! Did you think I forgot about you?
A little sneak peek of our adventure in Maui....
A new addition to our family! Meet Gracie!
On Tuesday I had my radiation simulation, including another awesome tattoo...
How is it that time just passes in the blink of an eye? All of a sudden, here we are at the end of another year. It never ceases to amaze me at how fast life continues to roll on - no matter what we are dealing with. I suppose that is a good thing in many ways. It helps drag us along during those tough times, until finally we can feel the weight start to lift and the sun shine on better days.
As I sit here reflecting on this year, I feel such a mix of emotions and thoughts - all of which culminate to one overriding message. Perseverance.
The year has been filled with many up's and down's - which is true for all of us - although especially lately, it seems like the lows have been more frequent and deeper to crawl out of. We have had many blessings including a new home, continued good scans, and countless great memories with family and friends. But, this year has also brought many challenges for us emotionally which have tested our faith and trust in the greater plan that God has for us.
The past few months have been the most challenging for me emotionally since my initial diagnosis. Due to a variety of issues, I hit a new low and struggled to even find the joy in each day. For the first time, I truly wondered if I was being punished for something. I felt an overwhelming sense that we were continually knocked down and made to endure heartache after heartache, while it seemed like others around us, received abundant blessings and joy. It is a very dark and lonely place to be.
As I have worked through these times, I have simply resigned myself to the fact that our lives will forever be filled with pain and heartache. Living with this disease has impacted our lives in countless ways, many of which I am just now starting to fully understand and experience. The continued physical toll is heavy, but the emotional toll is often times unbearable. I have recently felt as though this can turn you into a pretty selfish person - focusing on how hard you have it - how sad you may feel - how your future will never look like what you always thought it would. I fell down a slippery slope of sadness and guilt and failed to see how I was pulling Mike down right along with me.
The one positive aspect of hitting your own personal rock bottom, is that you have no choice but to go up. To make the slow climb out of the darkness and back into the light. It allows you to take time to reflect, to evaluate, and to reset your life's compass back on the path that you would most like to travel.
I share these personal struggles not only as a cathartic tool, but to also help remind myself that it is okay if I am not able to feel grateful, positive and optimistic 100% of the time. I have struggled with guilt and feeling like a fraud when I experience these tough times because so many of you always think of me as being so happy and positive. I am trying to release myself of these chains that bind me to the sense that because I am alive, I must be grateful at all costs - because I have lost friends that would trade places with me in a heartbeat. I am learning that because I have been able to stay in remission, doesn't mean the collateral damage of this disease will leave me - and that it's okay and perfectly human to have moments of despair, sadness and even self pity. Yes, I am so grateful - for so much - but this life is also very difficult at times - more difficult than I would have ever imagined.
Life is about perseverance. It is about riding the waves of the good times, but being able to pick yourself back up when you get knocked down with your face in the sand. It's learning how to brush yourself off and get back out there to try to ride that wave of happiness once again. Because in the end, those moments of pure joy are worth every second of despair and defeat that may be encountered along the way.
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Seems like I have sand and surf on the brain, huh? :) Well, that's because Mike and I are leaving for California the day after Christmas. To say that I am excited, is definitely an understatement. We have wanted to take this trip and venture along the Pacific Coast Highway for years and I am so glad we are taking the time to do it. That is one gift that living with disease can give. It makes you realize that there is no sense putting off your hopes and dreams if you have the ability to make them a reality. Do it today. Do it now. We never know what tomorrow will bring. We need this time away together so badly and I cannot wait to see the ocean, and the Redwoods and watch the sunset with Mike by my side.
Not only will we be celebrating our 6th anniversary on this trip, and New Years Eve, but we will be celebrating another round of great scans! I saw Dr. F last week and found out that everything still looks great! He is very please and so are we - to say the least! I will continue with my current meds and 6 month scans - no need to change course. Thank you all so very much for your prayers and support. Going through those tests is such an anxiety ridden time, and your loving words of hope and encouragement mean so much to us.
Thank you for loving us and supporting us along this journey. We hope you have a wonderful holiday season with your nearest and dearest. We look forward to great things in 2014. See you in the New Year!
Can't wait to share our images from California in the next post. Until then, a few iphone pics of my beautiful friends, family, pup and yard. :)
This is definitely the longest I have ever gone without updating the blog. I'm sorry for worrying some of you. I started hearing more and more comments like, "I hope everything is okay - you haven't updated your blog in awhile." Rest assured that you can take it as a good thing and it just means that I have been busy living my life and trying my best to not think about cancer...although there isn't a day that goes by that I escape it. The past month or so has been a full one - we celebrated my birthday (and 2nd Cancerversary!!!), Mike started his busy baseball season, photography sessions are picking up, and....we bought a house! Woohooo! We closed on our house the second week in April and we are very excited about it. Mike and his best friend, Justin have already gutted a ton of the house. We have started some major renovations and can't wait to see it all come together. We will continue living at my Mom and Doug's house until most of the remodeling is complete. It is an exciting time for us and we are so grateful to have found a home in our favorite area - where we have more space, less noise, and are surrounded by deer and all sorts of beautiful wildlife....all while being only 20 minutes from my Mom, 10 minutes from the Karmanos satellite I am treated it, and even closer to work. I'll keep you all posted on our renovation process (which has become a part time job!) - you know I will document it all with my trusty camera. :)
I continue to feel pretty good and I couldn't be more grateful for that. My hot flashes have been a real annoyance lately and I have been dealing with sleep disturbances for quite awhile now. I know that insomnia is extremely common with cancer patients and although I don't think I truly have insomnia, I can't remember the last time I have been able to sleep through the night. My back has been feeling good and I am so grateful to be able to work and exercise with minimal pain - although it always does remind me when I start to over do it and need to rest.
I saw my oncologist, Dr. F on my birthday and he was pleased with how I am doing. He agreed with my thoughts that we should just stay the course with my current treatment as long as it's working. I continue on my oral meds as well as my monthly injections into my abdomen. Dr. F even went as far as to say that I don't need to see him for 12 weeks (instead of 8), and that I could even bump my scans back to every 9 months instead of 6! Although I love the idea that I don't need to see him for 12 weeks, I am not quite ready to push the scans back to every 9 months. The thought of that just really scares me right now so we are going to stick with the 6 month schedule. I have friends scanned every 3 months and it's terrifying to me how much has changed with their disease in that short time, so I don't want to go too long between my tests. I am just happy to be doing well enough for him to even suggest that. And to think that I don't have to see him for 12 weeks when there used to be a time that I saw him every single week - it just makes me very happy, relieved and grateful. My next round of scans is scheduled for June 5 and then I will get the results on June 13 when I see Dr. F next. Of course, I always appreciate extra prayers around scan time, so thanks in advance for that. :)
I also want to extend thanks to all of you that offered words of encouragement and prayers for my dear friend, Jeanne' that I wrote about in my last post and for all of my Mets Babes. Little did I know that while I was actually writing that last post, Jeanne' had passed away. I found out the next morning - on my birthday. It was a very difficult time for many of us - to say the least, but I am grateful to know she is in a better place, and finally able to rest her tired body.
I hope everyone is doing well. Thank you for your continued love and support.
ps-Team Meghan Malley Rally is once again participating in the Detroit Race for the Cure. Please come join us on May 18th (even if you don't officially register). More info can be found here... http://www.active.com/donate/detroitRFTC13/2013MMalley
Some quick snapshots of all of our happenings lately....you can also find my "picture a day" challenge over on Instagram - follow me @megmalley to see what I am up to, including more house updates!
Some sneak peeks of the new house projects....
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!
We finally received the good news we were praying for! Thank you, Lord!!! And thank you to all of you, our amazing family and friends for your non-stop prayers and well wishes - it definitely paid off!
I am totally wiped out from an extremely long and exhausting day, so hopefully I include all of the important details. We had long appointments with both Dr. F and Dr. B today which meant we were at doctors offices from 9:45am until 3pm with a one hour break for lunch in the car while driving. It's all worth it though, for such great news!
We met with Dr. F first and he informed us right away that the test results looked great! He said that the CT, MRI, and bone scan showed the following...
--breast tumors demonstrate significant shrinking
--axillary lymph nodes demonstrate shrinking
--there is evidence of healing in the bone throughout my spine
--no new evidence of disease! BOOYAH! (okay, not exactly Dr. F's words)
Overall, this was the best possible news we could have received and we couldn't be more relieved and thankful! I am so grateful that these past five months of chemo haven't been for nothing, and that the cancer is actually responding well. Dr. F was very pleased and said that we are definitely headed in the right direction. He said that the imaging studies will always show abnormalities throughout my thoracic spine where there has been cancer, but now there appears to be evidence of healing. He even said that I may not have to have radiation to my spine, which would be wonderful!
The rest of my appointment with him consisted of formulating our plan of where we go from here. So, here's the latest...
--start hormone therapy (Tamoxifen) - a daily oral medication which will interfere with the activity of estrogen, which is what is feeding my cancer
--start Zoladex - a monthly injection to suppress my ovary function. This will shut down my ovaries and stop them from making estrogen so that the tumors cannot get the estrogen they need to grow. This also means MENOPAUSE! Just another "perk" of having the big C. ;) Who would have thought I would start menopause at the age of 29?!
--after surgery, start Denosumab - a monthly injection to strengthen my bones and try to protect them from further damage due to metastasis
So, today I started the Tamoxifen and received my first injection of Zoladex - a humungous needle which is injected into my abdomen = fun times! I will have a follow up appointment with Dr. F in 6 weeks and will be re-scanned every 6 months at the absolute latest - it could be earlier than that if I am having any new symptoms or concerns.
After a collective high five between Mike, Mom and I, we nearly skipped out of Karmanos and headed over to Beaumont to meet with Dr. B. After a physical exam and review of my imaging results, Dr. B also informed us that she was very pleased with my progress. She said that she didn't expect my cancer to respond so well to the chemo since it normally responds best to the hormone therapy. We met with Dr. B for at least an hour, discussing all the details of the surgery, what I can expect, and what recovery will be like. Dr. B's wonderful nurse, Linda then used this great new device to take some measurements of my arms in order to compare them to post-op measurements to track any possible lymphedema. Lastly, we finally set our date for surgery. Friday, October 14 is the big day for the bilateral mastectomy. I am definitely nervous about it but happy to finally have a plan and know when it will be. This will give me some time to get my energy level and blood counts back up since they are still pretty low due to chemo.
So, that's the latest and greatest news! More upcoming appointments on the horizon are...
--meeting with Dr. M my plastic surgeon on October 3 for final preparations before surgery and the start of the reconstruction process
--meet with another new team member, Dr. R who is a physical medicine and rehabilitation doc at Beaumont to take more pre-op measurements and assessments. He will also be the one to let me know what my restrictions after surgery are and when I can start physical therapy in order to get my range of motion back in my arms....good thing I have some connections to some awesome PT's :)
--meet with another new team member, Dr. R who will be my radiation oncologist. I will meet with her before surgery to discuss our plan for radiation to my right breast and chest wall, and possibly my spine. Radiation will start about 4-6 weeks after surgery.
As you can see, it's going to be a long road ahead. But what better motivation to forge ahead than receiving such terrific news, like I did today! I can't thank you enough for being there for me - for all of the texts, phone calls, emails, blog posts, and facebook messages I received in the last couple of days. It truly makes me feel better to know that I have so many people praying for me - you guys are the best! Keep the prayers coming because we still have a long way to go. But for now, I will bask in this great news. For the next five weeks, I am going to focus much of my attention on trying to regain my energy, slowly begin exercising again, and taking the absolute best care of myself in anticipation of surgery. And you know I will also be mixing in fun times like this Saturday at the U of M game (thanks Aunt Clare!), a friends wedding, taking my hubby to a great concert, many birthday parties, strutting my stuff in a charity fashion show, our fundraiser on September 25, trips to the cider mill...and much more! Thanks again everyone! And thank you God for answering our prayers!
In honor of the coming of my favorite season, here are some fall pics from a wonderful trip to the U.P a couple of years ago...
Big birthday celebrations are not really his thing. He hates to be the center of attention and never seeks out the limelight. But on this one day of the year, my fabulous husband begrudgingly allows me to spoil him and give him some extra special attention, which he most definitely deserves. Mike would not be a happy camper if I went on and on about how much I adore him, how much he means to me, and what an impact he has had on my life over the last 12 years...see above sentence regarding his discomfort with extra attention. ;) And with my gift of gab, you all know what I really want to do is just that...write sentence after sentence after how incredible he really is. But the thing is, I don't even need to do that. Most of you that are following our journey, know Mike personally...and to know him, is truly to love him. Period. So, as one last birthday gift to my amazing husband, I will not gush about him - I will simply say that we had a wonderful time last Thursday celebrating his birthday. We had a very special and meaningful day together reminiscing about the past, dreaming of the future, and enjoying time with our family and friends. Happy birthday to my very best friend - can't wait to celebrate many more together!
The time has now come to round up the troops in order to bombard the heavens with prayers and good vibes. A CT scan of my chest, abdomen, and pelvis is scheduled for first thing tomorrow morning. Then on Tuesday morning I have an MRI of my thoracic spine followed by a full body bone scan. This is the first time I will have these scans done since I was diagnosed back in March. I have been so busy lately that it doesn't seem like I have had too much time to worry about these tests. But, I am wondering if subconsciously, I am more stressed about it than I thought. For the past week or two, I have been waking up at least 4 times each night, and have had difficulty sleeping for more than 2 hour increments. I wake up in the morning feeling like a zombie, with a sore jaw on top of that from grinding and clinching my teeth. I am really hoping that it's just due to anxiety and it will resolve after these scans are completed.
Repeating these tests is obviously scary, stressful, and overwhelming for a lot of reasons - one of which is because it brings me right back to the first few days and weeks of this entire ordeal. What a terrifying time that was for us. This time around I know what to expect, which definitely helps - but I don't think the fear and worry will ever go away. For the rest of my life I will be monitored by scans, tests and blood work and the truth is that as positive as I may be, I will always be terrified of what could happen. The reality is that things could always be worse, the scans could always show progression, and we could once again be faced with devastating news. I pray this is not the case, but I feel that preparing for the worst has helped me deal with whatever may come my way.
Early on in this journey, Dr. F explained to us that because my cancer is driven by estrogen, the hormone therapy I start after chemo will actually be my best weapon against this disease. Although we all agreed to start with chemo to try to contain the spread of the disease systemically, it is actually the hormone therapy I will start next that we will expect the greatest results from. With that said, we are prepared that these scans may not show any big changes since chemo started. And that is okay! The key is that we don't want to see any spread of the disease. If I have remained stable, that is good news to us - and if there does show a decrease in the tumor size or spread, that is icing on the cake!
I will finish (yes, I said FINISH!!!!) chemo this Thursday, September 1. I can't believe how fast these 15 rounds have flown by. I have some mixed emotions about wrapping up with chemo - it is my routine now, I know what to expect, I feel comfortable there, I know how I will feel afterwards, I know everyone and everyone knows me. But, I also know that it's time to move on to the next hurdle and get on with the show.
We leave for Florida with Mom and Doug super early on Friday morning. Yay! Our wonderful friends, John and Paul have invited us to spend Labor Day weekend at their beautiful home in Fort Lauderdale. We are definitely excited for an "end of chemo celebration" which will include sunshine, sandy beaches, and visiting with lots of friends! Not only will we get to stay with John and Paul but we will see one of my mom's best friends, Sally - one of our biggest cheerleaders and supporters! Then later in the weekend, we are meeting up with Brin, Andy and Andrew again!!! We are meeting them in West Palm Beach, along with Brin's wonderful parents, and I am so happy we get to see them again so soon. I am really looking forward to a little getaway to mark the end of a huge chapter of this journey.
Next week will bring the official start to the school year and Mike will be back at work full time. I know we are both a little nervous about it, but I am confident it will all work out just fine and I will be okay fending for myself at home. :) Mike is such an incredible teacher and he absolutely loves his job, so I am happy that he will be back in the classroom. I am so grateful to the Waterford Kettering administration and staff for being so amazing and allowing me to have my husband with me each and every day these past five months - I don't know what I would have done without him there with me and I am so appreciative to each of you that allowed that to be a reality for us.
A week from Thursday (on September 8), we will go see Dr. F to find out the results of this weeks tests. That will be a major appointment where we will discuss the next part of our game plan and figure out where we go from here. I am definitely having surgery, but there are also a lot of other treatments we may begin right away in the form of oral medications. Later that afternoon, I will also go see Dr. B at Beaumont to discuss final surgery plans and hopefully set the date for my mastectomy.
Wow, just typing all of that makes me feel exhausted - let alone going through it. Please keep me in your prayers this week - if you do already, maybe you could throw in a few extras. Please pray that the 4+ months of chemotherapy have stabilized this disease, that my healthy cells have continued to fight, and that my bones have remained strong and stable. Please pray that my incredible doctors and medical team continue to seek the most comprehensive and aggressive treatments available, that they are able to guide us along a healing path, and that they continue to push for more research and discovery for metastatic disease. Please pray that my family and I are able to ease our minds, calm our fears, and stay positive and hopeful throughout the many days of waiting for my test results.
I will definitely update everyone next week after our appointments. Until then, I want to pass along a moving and inspirational short film to all of you. It was shared with me by an amazing woman I have met that is also battling metastatic breast cancer. It is a powerful message regarding living with metastatic disease and I plan on playing it over and over again when I need a little boost. Please click here to read a short interview with the film's creator, and be sure to watch the 15 minute movie at the bottom of the page when you have time.
Have a great week and a happy Labor Day celebration. A special congratulations to my friend, Stacy! Sorry we are missing your big day - can't wait to see pictures. You will be a beautiful bride!
Sometimes I feel at a loss for words...and for those of you that know me well, you know this is a rare occurrence. ;) Today is one of those days where I am not really quite sure how I feel, what I want to say, how I want to say it. I feel like I am on a teeter totter and I am one slight move away from either falling into that dark space or lifting up into a place of sunshine and gratitude. I am having trouble sorting out the thoughts in my head and in my heart and I am desperately trying to stay in the positive, live in the moment, smile, laugh, and be thankful. Although this journey is going to be the most trying of my life, I know that there is still so much to be grateful for. I am grateful for the constant support and love from my INCREDIBLE husband, my mom & Doug, and all of our friends and relatives. You all have no idea how much of an impact you have on us right now - how your words and gestures truly can turn around a really tough day, and make it brighter again. So please keep the love coming!
This morning Mike, my mom, and I headed downtown to Karmanos in order to have minor surgery to get my port placed for chemo. A chemotherapy port is a small device inserted under the skin (below my collarbone) with a catheter that is connected to the subclavian vein, which then connects to the superior vena cava. The advantage of this pump is that the veins in my arm won't be so beat up with the constant injections from chemo, and blood can also be drawn through the port. You can read more about it here and enlarge the picture at the bottom of the link for more details.
My check-in time was 8am but the procedure didn't actually take place until after noon. The hours in between were spent getting poked for an IV and blood draw, chatting about upcoming appointments, making each other laugh, and talking about how amazing lunch at The Fly Trap would be. I was not allowed to eat or drink after midnight last night and I was starving! Because I was so hungry, I opted out of the sedation...that's some serious hunger! :) They said that I would have to wait 2 hours in recovery if I chose to be sedated, so I said "scrap it" and just had local anesthesia. The procedure took less than an hour and we were on our way. It's definitely bizarre to have this artificial device in my chest and have yet one more scar to tell the tale of this disease.
Off to lunch we went and we were all feeling good and enjoying the beautiful sunshine. We were soon reminded that we were still riding this crazy roller coaster when I got the call from Dr. F's nurse. As we feared, the MRI results of my spine are again inconclusive. They are definitely worried about the spot at T12 as well as a few other spots that the MRI showed. I also discovered that I have a herniated disc at T5, which as a PT, this surprised me because a thoracic level herniation is rare. So, now we wait...again! I will now have to get a biopsy of my T12 vertebra, which will definitely be the final answer as to whether this cancer has infiltrated my spine. If it has, this means we are looking at Stage 4 level of disease and I can't begin to tell you how terrifying this is. Needless to say, this put a little damper on our lunch, and the three of us had a very real, emotional, and difficult conversation. No matter what stage this disease is, I will battle it with everything I have - but the worry I have for those that love me the most, just about brings me to my knees. Seeing the fear and worry in their eyes is worse than any physical pain I will ever endure.
Thankfully, there is some good news mixed in there... #1 - the spots in my spine could still end up being nothing and this would be the most amazing news ever! My wonderful brother, Jeff gives me the best pep talks lately and reminded me that there is just as good of a chance that this is not cancer and that we need to stay hopeful! #2 - Surprisingly enough, I found out yesterday that most of my genetic test results are in and I am negative for the BRCA 1 and BRCA 2 genetic mutations! This was shocking news to the genetic counselors, and my family. We thought for sure this was genetic and so now it makes me wonder, why the heck do I have this?! The answer to this question doesn't even matter, but can't help but wonder. There is still one genetic test that we don't have the results yet for- so there is a chance it could be that genetic mutation. This negative result is actually very good news for a variety of reasons because it reduces my chance of other cancers and further complications.
Due to today's recent developments regarding the need for another biopsy, my chemo treatments have been delayed. The results of the T12 biopsy could change the course of my treatment, so we now have to wait (ugh - I hate that word!!!) to see what this test shows. We should be getting a call tomorrow to schedule the biopsy for early next week. I think we will all feel better once these tests and preliminary measures are over and treatment can finally begin! To wake up each morning and fall asleep each night knowing this cancer is inside me trying to rob me of my healthy future, is enough to drive me crazy. I cannot wait to begin treatment so I can officially start the real fight! Bring it on!
I have an absolutely incredible weekend ahead of me and I am so thankful for that. After my MUGA scan tomorrow morning for my heart, I am heading to opening day with Jeff. This is how I know he is very worried about his little sister--I teased him by saying, "look what I have to go through to get an invite to a Tiger's game!" Saturday is going to be a complete blast spent with some of my best friends as we paint and redecorate my bedroom. My extremely creative and talented friend Julie has designed an entire new bedroom for Mike and I so that we can have our own little sanctuary to help us heal. I am beyond excited to see it all come together and have this incredible space to relax and recover in! As if all of this isn't incredible enough, Sunday is what our family friend Gina calls a "love fest"! Many of our family and friends are coming over Sunday afternoon to spend some time with us and share their love before my treatment begins. I am so grateful that Gina had this wonderful idea and I know it will be a fabulous day. If you aren't busy from 2-4pm, come by and say hello :)
I hope that everyone has a wonderful weekend with the ones you love. I can't help but thank you again for your love & support. It is the best gift of all!
It was a bit of a challenge to get decent pics of the port since I was taking them myself. The port gets a little cut off in this first image but you can see the incision in the bottom of the image and that's where the port is. There is also another small incision just next to my collarbone.
Side view let's you see that I now look like I could be a member of Star Trek with this lovely, freakish protrusion sticking out from my chest.
And because pretty flowers always make me smile....some macro images of my tulips...
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