"A mixed bag"....That was Dr. F's opening line as he shared my latest scan results with me today. I had a new round of scans completed Monday and saw Dr. F today for the results, now that I have completed three months on this new chemotherapy regimen. The "mixed bag" he referred to goes a little something like this.... Good news:
Not so good news:
This is often the dilemma with metastatic cancer - treatment can be working in one area of the body, but maybe not somewhere else. Another dilemma is that treatment options are not infinite so at what point do you decide the current chemo is not effective and move onto the next...knowing full well that the more options you blow through, the less that remain for the future. Thankfully, I have an extremely experienced, knowledgable, and collaborative team of physicians who I trust wholeheartedly to help guide my decision making. My oncologist and radiation oncologist consulted with each other and with the radiologist who wrote the report on this round of scans. They believe that the scapula metastases might be old. The difficult part of these scans is that bone damage due to active metastatic disease can often present similarly to that of areas where the bone is healing from old mets. They are hoping that I might not be having progression of disease in the bone, but that this chemo might be healing mets that were in the scapula already but weren't detected on the last scan. There is no way to definitively know unless we biopsy the bone. No thank you - been there done that. Not fun. As for the growth of the tumors in the liver, my docs think that it could be due technical error with difference between the current and previous radiologists reports and could even be due to a difference in the amount of contrast during testing. I am not well versed on this, but I am taking it as a positive sign if the growth seems that small that it could be chalked up to something like this. Overall, Dr. F said there there is not enough evidence for him to want to change course of my treatment, especially because I am tolerating it pretty well. So, I will stay on this chemotherapy (6 pills each day- 2 weeks on treatment, 1 week off to let my blood counts rebound) until we re-scan again in 3 months. I will continue with blood work and visits to the oncologist every 3 weeks, as well as an infusion for my bones, and as always, if I am not tolerating treatment or have any change in my symptoms, we will bump up scans right away and forge a new path. I have so much to be grateful for and that will remain my focus. One of the greatest sources of my gratitude is that I haven't had many of the major side effects that others experience on this chemo. The biggest issue I am having is the hand-foot syndrome that I feared from the beginning. My skin has started to take a beating over the last week in particular. It is cracked, peeling, burning and sore. Bag Balm gives me the greatest relief, but it makes it difficult to do much with my hands when they are lathered with this greasy stuff. The good news is that although my feet don't look so great either (and even worse since I took this picture), they aren't painful and sore like my hands are. I continue to stay active, without this affecting my quality of life. If I am being honest, I do wish these scans showed more improvement. But, I am grateful that there is any area of progress at all, and that things don't look worse. I will remain hopeful that continued progress will be seen in 3 more months.
Thank you for all the love and support this week, and always. This is not an easy road and I know I couldn't do it without the support of my friends and family. With love and gratitude always, Meg xoxo
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No news is usually good news in our world, which is why it's safe to assume that if the blog hasn't been updated, my health is likely stable. Unfortunately, we are at a new crossroads where it appears I will have more frequent blog updates. Don't get me wrong...I am so grateful that people still care what is going on with my health after 10 1/2 years of traveling this cancerous road. But, I would be lying to you if I said that I didn't wish I could just remain flying under the radar in "Stable-ville"...a blissful land where most people forgot that I lived with Stage IV cancer because I look healthy and don't talk about cancer much...a place where my scans are nice and boring. But, here we are. This feels like an entirely new ball game, friends. Not only is this the quickest I have ever experienced a recurrence (aka - quickest I have "failed" my treatment....how much BS is that?! As if it's somehow the one fighting cancer every day, doing their damned best to live a healthy and meaningful life that has "failed"? I'll climb off my soap box for now), but this also means that I have hit the end of the road for treatment options that are in a category called "endocrine therapy". They have served me so well over this last decade but I was on the very last one available, in combination with a "targeted" therapy, and the cancer spread worse than it ever has before. The real gut punch and game changer is that this is the first time that my breast cancer has spread from my bones to a distant organ. It has spread throughout my entire spine, my sacrum (tailbone), my left hip and my left arm - but it had always stayed in the bones. The reason this is so significant is so that (pardon my bluntness) metastatic breast cancer can't kill you if it's in your bones. It can surely be uncomfortable and require a lot of radiation (thank goodness for that because it definitely helps ease the pain!) but you don't die from it in your bones. It's when this awful disease sneaks into your vital organs that you really need to worry. I have known this since the beginning. While I am positive and optimistic, and have always remained hopeful, I also know the facts. I have been well aware of the fact that this disease eventually outsmarts the treatment and spreads. And metastatic breast cancer, in particular, likes to spread to the bone, lungs, liver, and brain. The thought of it spreading outside my bones, and into my organs, has taken up a small recess in the back of my mind for the last 10 1/2 years. To be here, to be living in the reality of that now, seems surreal. If you didn't see my post last Thursday, this is what I shared on social media when I found out the results of my scans.... I’m sad to say I didn’t receive the news I expected today. My cancer has spread to my liver. I'm in a bit of shock honestly. But, I know we will pivot and find a new path forward. We have done it plenty of times before. While I wish I had more time on this current treatment, I’m a grateful it gave me a really good 16 months. I will be starting a more aggressive chemo next week and praying that it not only works, but that the side effects don’t keep me from living the life I love. That is my greatest fear. I know I say it all the time, but I genuinely mean it…I am beyond grateful for the love and support from our friends and family. I don’t know how anyone gets through this stuff without it. Today, I will let myself feel, process, and grieve what I need to. Tomorrow is a new day to be thankful for. ...On to the next Image is original artwork from Morgan Harper Nichols I started chemo yesterday.
I am grateful it is an oral medication that I can take at home; 3 pills in the morning and 3 again in the evening. So far, aside from a little nausea, I am feeling okay. I have felt so HUGELY loved and supported, but I am not going to lie, I have also had waves of sadness that creep up on me at unexpected times. It's just the reality of where I am at right now. I am extending myself a lot of grace, leaning into those I love, and allowing myself to feel whatever I need to feel. I know I will get in the swing of things with this new treatment and that I will continue on as I always do. Life is too precious to do it any other way. More to come soon. Thank you from the depths of my heart for loving and supporting us. We know we are so loved. xoxo, Meg Last month was quite the special one. I was blessed to celebrate another birthday, received stable scan results, and reached a milestone I wasn't sure I would ever see. Ten years since my Stage IV cancer diagnosis! An entire decade living with this disease! I always assumed that day would bring a flood of emotions; a flurry of thoughts about what this last decade living with disease has been like. But in all honesty, it simply didn’t. I woke up and started my day like any other. Texted Mike good morning since he is out the door so early, snuggled with Gracie, got in a workout and savored my morning coffee as I got ready for work. Had a usual busy day in the clinic, got home to walk Gracie, then raced out to celebrate my wonderful step dads birthday with the family. It felt like a typical, normal day. I had every intention of composing a blog post that night as a way to process my emotions, since it has always been a cathartic experience for me. But those emotions I was expecting never came the way I figured they would. I didn't force myself to write or share any thoughts marking this occasion. I didn't want to force it just because it was a special anniversary. Over the last several weeks, I have taken more time to reflect and that's when it really hit home for me. That "typical, normal day" was the celebration - that right there was IT. That was the destination I was cautiously hopeful I could reach. The place where I was able to go about a normal day with cancer being in the recesses of my mind, instead of the forefront. Where pain, worry, fatigue, sadness or fear took a back seat to happiness, laughter, gratitude and the small every day moments that bring me joy. Where even the major milestones would simply feel like another beautiful spring day...okay, maybe a spring day with some champagne! I couldn’t imagine this place ten years ago. Turns out it didn’t take me a decade to get here. I am grateful I have found my way here more often than not, even on days where it has taken a whole lot of effort. But, I’ve also lost my way plenty of times too, where the road has dipped and spiraled. Where the tough stuff wins the day. Where this disease gets the best of me or I lose sight of the things I swore I would never take for granted. But ultimately, I am proud to say that I have tried to live life to the fullest. I have tried to take heartbreak and grief and turn it into healing and gratitude. I have tried to support others along this journey, knowing how isolating and scary it can be. And I have tried to stay rooted in the knowledge that this is my one precious life and I want to make the most of it. I can't say enough 'thank you's' to truly give thanks to each and every person who has supported Mike and I over these last ten years after the devastating blow of this diagnosis. Without the love and support of our family and friends, I don't know how we would have made it this far. We feel so blessed and truly so grateful. Here's to another 10!....and many, many more! xoxo, Meg A special thank you to one of my besties, Kyle, for spoiling me with roses, balloons, cake and bubbly to celebrate this special day! Oh, and did you see Mike's incredibly special post on Facebook? Yes, that's right folks...Mike posted for the first time on social media! Please read his beautiful and heartfelt message. Truly something I will treasure for a lifetime. 10 years and the things I have learned........Hello everyone, I don’t share much (or anything really) on social media but I really feel the need to get this “out there”. Tomorrow Meghan Malley gets scan results and it has really caused me to do a lot of reflecting lately. We are coming up on the 10 year anniversary of her diagnosis with stage 4 breast cancer. It is hard for me to wrap my head around the fact that it has been that long. I can remember like it was yesterday when she called me at work during lunch and told me the news. That was certainly a life changing day in so many ways. I am very proud of my career as a teacher and coach but I can assure you over the past 10 years I have been the one doing the learning- from Meghan. The way she has dealt with her medical situation and all comes with it is truly remarkable. I wanted to share some things I have learned from her along the way. 1. I have learned that you can face any situation you are confronted with and choose how to react to it. I don’t really believe “everything happens for a reason”, but Meghan has taught me that even when something happens to alter what you thought life will be you can choose to still create a beautiful life. I have learned that a husband and wife and their dogs can be every bit as much of a family as any other type of family that is out there. Thank you Meghan for teaching me that . 2. I have learned that you can take a difficult circumstance and help others in similar situations to an amazing degree. I have learned that if you feel underrepresented by major organizations than you can impact change within them- I have seen Meghan do this. I have learned you can share your story with others and provide hope to them. I have learned you can take phone calls from newly diagnosed strangers and give of your time and energy and love. I have lalearned that if there isn’t a support group for young people living with cancer, then you start one. I can’t imagine how many people have benefitted from this. 3. I have learned that you can prioritize your own physical and mental health and that this investment of your time and energy will greatly improve your quality of life, especially when you are facing major health treatments. I am so proud of Meghan for taking such good care of herself both mentally and physically. 4. I have learned that you can empathize with others on a different level when you face these challenges. There is no doubt in my mind that Meghan is able to relate to her patients who are facing catastrophic injuries and illness in a way that most people simply can’t conceive of. I am in awe of how well Meghan does her very important job given that her energy levels and pain levels are so often impacted by her illness and treatments. 6. I have learned to never put off things you really want to do. Meghan has helped me to see the value of “going for it”- take the trip, go to the event, call your friend you are thinking of. It is kind of a cliche but I truly have learned to do this from living with Meghan these past 10 years. 7. I have learned the tough times are ok. It is important to allow yourself to feel sadness and to grieve losses. Meghan has done an amazing job of staying so positive throughout all of this without ignoring or failing to deal with the realities. 8. I have learned you can keep a sense of humor in the face of adversity. Meghan can always make her doctors laugh and keep perspective when meeting with them. She also will make “dark” jokes about her illness that probably only she and I would find funny, but it really helps sometimes. 9. I have learned that it is important not to let statistics define you. Whatever the “odds” are given your circumstances those odds themselves are NOT your circumstances. Meghan has taught me you can crush those odds and she is going to keep doing that. 10. I have learned to never lose sight of “the invisible battle”. The people we all deal with every day are going through things you have no idea about. Extend grace to people as much as possible. We had a friend over for dinner the other night who remarked that it really was amazing to see Meghan and how she lives and that “ you would never know”...that really made me think. Extend grace and patience to people as much as possible. Maybe your PT that is working with you just had to race into work after a long meeting with her oncologist.... maybe your teacher was up all night with his wife who was experiencing horrible pain.... I wanted to put this out there for a couple reasons. The biggest one is to celebrate something that is so worth celebrating during what has been such a tough year for so many people in so many different ways. Another major reason is that I hope someone out there will come across this at “the right time”. I can tell you that 10 years ago Meghan and I were desperate to find stories or examples of people doing well for this long with this diagnosis. I have learned so much in 10 years, but above all I have learned that life can be beautiful through alll the ups and downs. Thank you Meghan for teaching me... Birthday getaway to Lake Michigan with this handsome husband of mine. Grateful to have Dr. F by my side for these last 10 years!
I've been dragging my heels writing an update. I think that is because there is just so much I could say....the research studies I read outlining the "progression free survival times" of each of the options on the table, the details I learned about each of these drugs and their various side effects, the opinions my oncologist shared about not only these treatments but the state of my disease overall, and the various emotions that have bubbled up at different times over the last week or so. I have had a little "paralysis by analysis" about what to share, mixed in with a bit of fatigue now that I have returned to work, and topped off with the simple fact that I have thoroughly enjoyed all of my remaining free time without worrying about this disease or wanting to blog about it. But, with that said, I am so very grateful for all of the love and support so I did want to take the time to share the latest update regarding my treatment plan. Mike and I had a 45 minute telehealth appointment with Dr. F last Tuesday. We went through all of my options and discussed the pros and cons of each. We asked questions, shared our thoughts and opinions, asked Dr. F for his and ultimately decided on the next course of action.
I will be switching treatments to another combination of endocrine (hormonal) therapy and what's called, "targeted" therapy. The last treatment I was on was also a combination of these types of drugs. I have been on some form of endocrine therapy these last nine years, due to the estrogen receptor status of my particular form of breast cancer. This is my last option of endocrine therapy before moving on to stronger chemotherapies, so it was worth it for me to give it a go. It appears that my disease is becoming somewhat resistant to endocrine therapy but we are going to move forward and pray that it works for a very long time. The endocrine therapy I will be switching to is called Exemestane and the side effects will likely continue to be menopausal in nature, which is something I have continued to deal with for the last 9 years anyways, so no biggie! The side effects may include: hot flashes, headaches, fatigue, joint pain, nausea, increased appetite, insomnia or increased sweating. The targeted medication is called Afinitor. Research has found that it has promising effects when used in combination with Exemestane. Both of these medications are oral pills that I will take every day. The main side effect of Afinitor is mouth sores. They do not sound very fun to deal with-especially considering how much I love to eat! So in conjunction with the daily medication, I have to use a steroid mouth wash 4 times each day. Additional side effects may include: infections, diarrhea, swelling of arms/legs/ankles/face, feeling weak or tired, rashes, cough, nausea, fever, decreased appetite, abdominal pain and headaches. I have never been one to worry too much in advance about these side effects so we will just take it one day at a time and hope that most of these never arise. The medications arrived from the speciality pharmacy on Tuesday and I started them immediately. I have scans again this upcoming Monday to get a baseline as we change treatments. I will meet with Dr. F on June 11th to find out how my scans looked and to discuss how I am feeling on the new treatment. After 3 1/2 years of the same treatment and knowing what to expect, I would be lying if I said I wasn't nervous to start these new medications. I am also nervous that there is a chance they won't work and my disease will progress. That is a terrifying thought, as the number of treatment options ahead of me decrease. But I will continue to stay positive and have faith that this will work, and work for a very long time! Thank you for your continued love, support, friendship and prayers! xo, Meghan Friday afternoon my phone vibrated. I looked down at the number and took a deep breath. I immediately recognized it as a call from Karmanos Cancer Institute, and sure enough it was Dr. F, my oncologist. He informed me that there was just enough tumor sample in my ovaries to allow the lab to complete the testing for the genetic mutation. As he talked for a couple minutes, my mind started to swirl and I knew it wasn't the news I wanted. This was taking too long...he was dragging this out...he kept talking...he would have told me by now if it was good news...I know him well enough to sense these things. The biopsy was negative. Damn it. What comes along with this news is the fact that I do not qualify for the treatment we were hoping to try next, called Piqray. It acts upon a mutation in the tumor called PIK3CA. Approximately 40% of women and men with my type of breast cancer (ER+, HER 2-) have this genetic mutation and Piqray works to inhibit this pathway. It has shown to be a very promising treatment, with minimal side effects, which is why we were really hopeful this would be our next move. So, it's time to pivot. What do we try next? How many options are there? What does the research say? What are the side effects? Nausea? Neuropathy? Fatigue? Which are infusions that I have to go into the clinic for? Which are shots? Which are pills? What about clinical trials? What will allow me to have the greatest quality of life? Mike and I will have a telehealth appointment with my oncologist on Tuesday afternoon to discuss all of this and hopefully formulate a plan we feel comfortable with. The extremely difficult part in all of this is that no one has any definitive answers to these questions. Nothing is black and white. None of this is that simple. There are averages, probabilities, statistics. We don't know what will work next. It feels like a crapshoot, and that is tough to digest. Not even 40 minutes later, my phone vibrated again. My boss called and notified me that I was being called back to work, starting Monday. I am grateful to have my job back, but I couldn't help but shake my head at the irony of all of this. After 8 1/2 weeks of being laid off and also waiting on the next treatment decision, all of this is happening at the exact same time. I was hoping to be able to use this down time to adjust to a new treatment regimen, but that's not the way it has worked out. Once again, it's time to pivot. Luckily, I am able to take over our telehealth patients which will allow me to work from home for a bit, until I am needed in the clinic. Of course there will be a learning curve while figuring out how to treat my patients remotely, but I'm fortunate to have the opportunity to ease back into work in this way....and to minimize my risk of exposure to illness by being in the clinic. A lot of news to digest in less than one hour. I felt a wave of emotions on Friday night...nervous, anxious, disappointment, relief, fear, worry, gratitude. I have been in a safe, lovely little bubble with Mike and the pups for the last 8 1/2 weeks...and I'm not ready for that to end. I don't want to be anxious about my health or feel stressed over work. I woke up Saturday morning and made the conscious decision to choose positivity and to focus on gratitude. That has always been my compass which will steer me back to living life to the fullest, no matter what circumstances swirl around me. Today I choose to be grateful that I even have treatment options. I choose to be grateful that I have an oncologist whom I trust. I choose to be grateful that I have a husband who will support any treatment decision I make. I choose to be grateful that I will trust my gut, advocate for myself and ultimately be the captain of this ship - always. I choose to be grateful that I haven't had much pain over the last couple of weeks. I choose to be grateful that I have a job; one that makes a difference in peoples lives. I choose to be grateful that I will have a paycheck; that I can work from home, and that one day I will be back in the clinic with my co-workers who are dear friends. I choose to be grateful that we have had such a wonderful weekend and that it reminds me that the sun always rises, the world keeps on turning, and that life goes on. We will continue to ride this wave. We will continue to be resilient enough to handle what comes next. Time to pivot. xoxo, Meg We have continued to make the absolute most of this slower pace of life and extra time together. Hiking, biking, gardening, kayaking, relaxing...it's been such a blessing amidst all the chaos in the world right now.
The waiting game....It's never fun, but in the midst of a global pandemic, it has been taken up a notch. It has been longer than expected since I have shared an update and that is due to the fact that I was waiting for more information to actually update you on. Last week marked 6 weeks since I had been off treatment and over 5 weeks since the biopsy of my sacrum. Just as a little recap, that biopsy was completed in order to test whether my cancer has a particular mutation that would qualify me for a new promising drug, since we have come to another fork in the road regarding my treatment plan. I was told the biopsy results would take two weeks for the independent lab to complete, but I didn't hold my breath knowing full well that everything is delayed these days in the midst of COVID-19. While I awaited those results, I completed 10 radiation treatments, started to have pain relief, got off the meds that made me feel lousy, felt super grateful and relieved...and then the pain returned. It's been a bit of a rollercoaster, which seems to be par for the course when I'm in the midst of a recurrence. The good news is that after re-introducing the nerve pain medication, I am feeling better with minimal side effects...bonus! In all honesty, I have actually been surprised at how patient I have been while waiting for these results. (Patience is definitely not one of my virtues!) I have been able to let go of any stress or anxiety about it, knowing full well that it was entirely out of my control. But, come Week #4, I was hoping for some type of update. I called my nurse and was told that the lab had completed 3/5th's of the testing. Fast forward to Week #6, and I was starting to get a little antsy. I checked in once again to see if there were any updates, and that's when the rollercoaster ride continued. The first thing my nurse said was, "the biopsy is positive"...and I literally said, "yes!" out loud. However, my excitement and relief were quickly dampened when she said the lab did not have enough tissue to complete the testing. The "positive" aspect she was referring to was that the pathologist reported that indeed this tumor is metastatic breast cancer that has spread to my sacrum - which is what we already assumed. The fact that there wasn't enough tissue to complete the testing for the mutation was devastating. It has been very unsettling to be off treatment for 6 weeks; the longest I have ever gone in 9 years living with MBC. And now to top that off with feeling like that biopsy of my bone (which was not fun), and the subsequent 6 weeks of waiting...has all been a total waste. The plan now is as follows:
There are a few other important considerations that further complicate things. The one that weighs heavily on my mind is that no one knows if this tumor mutation survives in tissue that has been preserved for many years. There is a great chance that even if I have a positive mutation, the test will be negative because the tissue they are testing is 3 years old. On top of that, what if there still isn't enough tissue there to test? Do we have to wait until my tumors grow large enough to have a painful biopsy yet again in order to have a complete test? All of this scares me. To top it all off, communication with my treatment team has been poor and for the first time in 9 years, I have felt very in the dark and have been left with a lot of unanswered questions. For now, I am focusing on the hope that being back on some type of treatment contains my disease and hoping/wishing/praying/pleading that there is enough tissue in my ovaries to complete the testing and that the result is positive. I continue to practice letting go of what I cannot control and will continue to live, love, laugh and soak up every moment I can....despite remaining on this rollercoaster. xoxo, Meg Mike and I enjoyed a hike last weekend and coming upon this tree felt so poetic to me. Sometimes we are forced to bend so much that we think we might break. It's amazing what all living things can endure.
It has only been 10 days since my last post and yet, somehow it feels like a lifetime. I'll cut to the chase and let you all know that I am feeling much better and human again, but I'm not going to lie...this last week included a few of the toughest days I have ever experienced. Last Monday, Mike drove me downtown to Karmanos for the biopsy of my sacrum. Due to the coronavirus, he had to drop me off at the front door at pick me up hours later, once the procedure was over and I recovered from the anesthesia. I consider myself a pretty strong and resilient person, but it sure would have been nice to have him there with me. The biopsy went well and the surgeon told Mike over the phone that he believes he obtained enough samples of the tumor for it to be tested for this particular mutation. It was sent off to the lab and will take a few weeks to hear back on the results. While the biopsy went as well as it could, the nerve pain down my right leg increased dramatically in the days that followed. This type of pain is unlike anything I have ever experienced and so hard to even put into words. It's a horrendous combination of burning, stabbing, throbbing, tightness to the point of feeling like someone is ripping your muscles and nerves right out from under your skin. There is no position of relief. No way to stand or lay that brings comfort. No hot pack, jetted tub, stretch or massage that makes any bit of difference. The pain became so bad that while Mike threatened to force me to the ER, I tried everything and anything I could get my hands on to see if I could find any relief - or honestly, to just knock me out so that I could be relieved of this misery. I was completely desperate - and scared. It sounds so dramatic, even as I sit here and type it, but it is no joke. I have been through a lot of physical pain over these last nine years and I think the only thing worse than what this has been like was when a tumor fractured a vertebrae a few years back. Luckily, we didn't have to go the ER on Monday night and I finally passed out and was able to rest. I started radiation on Tuesday morning and while I laid perfectly still on that hard steel table, tears flowed right down my face. It was not only the pain that brought me to tears, but the forced stillness and resulting acceptance. Here I am again...for the fourth time...I am relegated to this place...to this room...to this machine...to this table...to be radiated...to try to tame this beast...this beast who just won't quit. By no means am I ready to quit, but it is extremely difficult to stay mentally and physically prepared for the "battle" when you are entering it already worn down from pain and exhaustion. The very kind radiation techs, whom I have known for years, were able to get ahold of my nurse who came to see me after that first treatment. She was surprised to see the look on my face and knew right away that I was feeling bad. She assured me she would talk to Dr. F when he arrived that afternoon and call me with the plan for better pain management. When I heard from her later that day, the pain was so intense that I had to ask Mike to go get the scripts filled for me. Once he returned home with the medications, I realized it was the same nerve pain medication (gabapentin) and steroid dose pack that I was on the previous week, with minimal reduction in my pain. I felt discouraged that this plan might not be effective, but obviously wanted to try anything to get relief. Fast forward to Thursday, and I am back at radiation for my third consecutive treatment, and in tears once again. This regimen offered very little relief and the pain had become nearly unbearable, I saw Dr. F after radiation was concluded and explained my symptoms. He shared that the effects of radiation could take 6 weeks to kick in and that in the meantime he wanted to put me on oxycodone. While I was nervous to take such a strong medication, I knew that something more aggressive needed to be done to get this pain under control - and fast. Within 30 minutes of taking that medication on Thursday afternoon, I had a huge reduction in my pain! I was so grateful and relieved, but soon realized that there was a new price to pay. The oxycodone brought a wave of nausea, dizziness, fogginess and groggy feeling that lasted at least 4 hours after the smallest dose. While feeling such relief from the pain, I felt discouraged and lousy from these side effects -but it was worth it in order to finally get some true rest, both physically and emotionally. I continued with radiation on Friday and although Mike had to drive me due to the dizziness, my pain remained under control and I was grateful! Going to radiation appointments every day has always felt like a sort of "Groundhog Day". But now with the coronavirus, social distancing and not working, it REALLY feels like "Groundhog Day". Attending these appointments every morning is my only excuse to leave the house, aside from walking the pups. I get to change into those fashionable blue paper pants, which are 100 sizes too big and threaten to fall to my ankles every time I move. Back on March 19th when I found out about the recurrence, we completed the simulation for radiation. In addition to tattooing parts of my abdomen, a mold was made around my legs that would keep me from moving while on the table. Once the techs place this mold down, they cover it in sheets and I climb up on the table and get into place. Once I am in place, I have to pull up my shirt, and shimmy down my awesome paper pants in order to expose my entire lower abdomen and hips. I recorded some time lapse footage for you here, as I did years ago during another stint of radiation. Pardon the blurred out areas - didn't want to share anything indecent with ya. ;) I completed 4 treatments last week, will have treatments every day this week (Mon-Fri), and will have my 10th and final treatment next Monday. I am praying that I receive pain relief from radiation much sooner than 6 weeks from now, and in fact, that might already be the case.
On Sunday, I decided to try to see how the day went without the oxycodone. It made me feel so crappy that it was worth testing the waters to see if I had any relief without it. And thankfully, I did! I haven't taken it the last few days, and my pain has been very tolerable with gabapentin alone. *Cue, HUGE sigh of relief. So, the good news is that I am feeling a bit more like myself for the first time since my birthday 10 days ago. I am still able to enjoy daily walks with Mike and the pups, get in comfortable positions in order to binge Netflix shows, and feel less dizzy and groggy so that I can laugh with friends during all these fun Zoom chats. I am still a little foggy, have other fun GI side effects from radiation that I will spare you from, and seem to be battling a bit of fatigue. These new times we are living in due to the coronavirus are uncertain and unprecedented for all of us. In some ways, life with incurable cancer has prepared me for this....living with uncertainty, feeling out of control, not knowing if you can be well one day and sick the next. Learning how to move forward and navigate life while accepting that so much is unknown, is something I have been forced to practice for many years now. I try my best to remain grounded in gratitude, express and stay curious about my emotions in healthy ways, and surround myself with people who lift me up. Of course, that last part has been tough in a time of social distancing. But, thank God for phone calls, Zoom, FaceTime, social media, texts, snail mail, meal drop offs...and all the other ways we can still show love and support for each other. For that, and so much more, I am abundantly grateful. Thanks for checking in and supporting us along this latest bump in the road. And for bearing with my long winded posts...let's hope each week is not as eventful as this last one was. Please stay home and stay well, my friends. xoxo, Meg I am not even sure where to start. I think I may have started a great majority of my posts that exact same way, especially now that I only seem to write when I have a bigger update. Actually, I have a good place to start....IT'S MY BIRTHDAY! I feel so grateful to simply wake up and inhale that first big ole' breath today. I know that sounds so cliché but once you have been through this kind of journey, you realize that it's anything but. While this will likely be the most uneventful and bizarre birthday I have ever had (considering we are basically in lock-down mode over here), I am just thankful that I am with my favorite human and two fur babies in our cozy home that we love. Onto this less fun news... Back in December, I started experiencing increased low back pain, with occasional radiation of pain down into the right side of my butt. At times, it escalated dramatically and became a very deep, gnawing pain. Right before this started, I had been battling a bad cold that lasted for several months, and then I experienced the death of three dear friends within a ten day period of time. So, I attributed the pain to prolonged standing in heels at the services for these friends, and increased stress to my back from so much coughing. I remember being nervous for our road trip to Asheville over New Year's because sitting for too long also became painful, and I was also concerned that I wouldn't be able to hike. Luckily, I was able to find ways to get comfortable in the car and we had a wonderful time with friends. My pain eventually subsided. Throughout January and most of February, I felt great. I was making it to the gym regularly, working full time and travelled not only to Asheville, but also to Florida to visit one my besties and to Denver for work, and to squeeze in time with more friends & family. On Monday, February 24th, I started having some radiating pain down my right leg. I have a lot of issues throughout my spine due to this cancer, including a herniated disc. So, I thought I might have just overdone it. We had gone hiking three days that week, I had been doing more yoga and I figured I needed to just scale back a bit. But, as the week progressed, so did my symptoms. By the end of the week, I was unable to sit down for more than five minutes without intense pain and burning down the back of my right leg. I could no longer sit at work, which thankfully we are on our feet almost all day anyway. I would cry on my drive home from work each day; unable to find any relief while seated in the car. That Friday night I watched a movie with Mike while standing up. There was no other position of relief...not sitting, not laying on my stomach, side or back. Nothing. Night time became unbearable. The pain started to elevate to a point that not only left me in tears and crying out for relief, but it would also induce a bit of an anxiety attack; leaving me desperate for relief and Mike asking on more than one night if he needed to take me to the ER. Of course, I always said no. As a physical therapist, I started to became concerned. I knew how my symptoms should respond if this was an orthopedic issue. Red flags were popping up in my mind, but I held out hope that there was still a chance it wasn't cancer. That weekend was really tough, to say the least. If I remained standing, I was okay. The second I would sit, I would be in horrible pain once again. The following Monday, I called my oncologist to say that I needed help. I couldn't take the pain any longer. They prescribed me a nerve pain medication, which provided some relief but not enough. By the end of that week, they prescribed a steroid pack to decrease the inflammation and attempted to move up my scans but couldn't. They were already scheduled for March 16th, which was just over one week later. So each day, I have just been getting through the best I can; standing as much of the day as possible, focusing on deep breathing through the pain when I have to sit, and taking all sorts of measures to survive the spike in pain at night. Last Monday, March 16th I headed to Karmanos on my own for scans. Mike wasn't allowed with me due to new rules surrounding the COVID-19 virus. I spent the day receiving a full body bone scan, chest/abdomen/pelvis CT, thoracic and lumbar MRI. I was already preparing that this would be an emotional week for me...as a self-admitted sensitive, sentimental soul. Scans, birthday, anniversary of my diagnosis...and then throwing in this insanely scary and uncertain time with the coronavirus and basically being in lock down at home since I am immunosuppressed. So, we waited for my appointment on Thursday and I just prayed the results would show what on Earth was causing all of this pain. And they did. This devious disease decided to basically eat up part of my sacrum (tailbone) and press into the nerves that exit there. ...."destructive lesion in the right hemi sacrum abuts the exiting right S1 nerve root and severely compresses exiting right S2 nerve root." Yikes. Well, that explains the pain alright! I wasn't surprised, nor was I sad. I was grateful something was found and that I knew I could have radiation to blast this tumor to bits and get rid of this pain. But somehow along the way, I seemed to overlook one major factor. That I would now be booted from the treatment regimen I have been on for over three years and have to move on to something else.....something new, something different, something we don't know will even work...something unknown. With my mind whirling a bit, I tried to focus as Dr. F. explained four potential options. (Note: once again Mike wasn't allowed to go with me so I felt extra pressure to remember all of the details.) I won't get into all the various options and pros/cons right now because I'm already long-winded enough. Basically, his first choice is a drug that was just FDA approved last year and acts upon a mutation in the tumor. The only way to know if this drug would potentially work for me is to know if my particular tumor has this mutation. That means it needs to be biopsied. Problem #1 - Dr. F explained that he wasn't sure it could be biopsied because of the location of the tumor. Problem #2 - If it could be biopsied; we would have to delay radiation (which is where I will get the pain relief from!) until the biopsy is completed because radiation will destroy the tumor Dr. F then explained they still have my original tumor tissue from my breast from 9 years ago. He could send that in to be test to see if it has the mutation. But... Problem #3 - No one knows if the mutation survives 9 years of tissue preservation. So, while Dr. F went to go work on finding out about the biopsy, he sent Dr. M, my radiation oncologist in. We went over the side effects of radiation to this region and what the regimen will look like. I'll post later about all that. He said he wanted do start as soon as possible. So, after I received the rest of my treatment on Thursday (shots in the tush and an infusion for my bones), I had the prep work done for radiation. Again, I'll post more later about that. Meanwhile, Dr. F returned and had good news...the radiologist said he thinks they can get the biopsy of the tumor! Yes! But... Problem #4 - It could be 1-2 weeks because they are short staffed due to the need for help managing the Coronavirus. Unfortunately, they are low on anesthesiologists. So, Dr. F said we will give it one week to wait and then we must start radiation. This is where I was going to ask for your prayers....that I would get scheduled for a biopsy next week. But guess what?! I already did! WOOHOO! They called yesterday afternoon and my biopsy is schedule for Monday morning. I will go under anesthesia and they will biopsy the tumor in my tailbone. It will be mailed off to a lab and hopefully take no more than 2 weeks to receive the results. In the meantime, I am off treatment. So, my next prayer request is for doctor completing the biopsy to get a good sample, and for that to test positive for the mutation so I can be eligible for this treatment. There we have it, folks. That's where things stand for now. Oh, and I forgot to mention I got laid off on Wednesday....can you believe the insanity of this week. It's almost comical at this point. The good news on the job front is that we hope everyone will be rehired once the virus is contained and we have patients to treat once again. But man, Jesus take the wheel! So, now I'm off to enjoy the sunshine of this chilly spring day. To soak up not only the Vitamin D, but all the love that I am being showered with lately. I am truly overwhelmed with gratitude for the incredible family and friends that I have. I can never thank you all enough. xoxo, Meg ps- Look at the love I woke up to this morning....a surprise visit from family singing me "happy birthday" after decorating our front yard in balloons, pinwheels and signs! I FEEL SO BLESSED! ❤️ As we embark upon “Breast Cancer Awareness Month”, I am grateful to see TIME magazine share the story of this courageous young women with metastatic breast cancer. Many of us living with mets (stage IV disease) often feel overlooked during celebratory events (or months!) which focus greatly on being “cured” and “beating” this disease. (And it's not lost on me that the title of this blog is "Let's Beat This Thing", but cut me some slack since I started this before I knew any better). ;) Those of us with metastatic breast cancer often don’t qualify for certain treatments due to our disease progression...suffer continuous and progressive side effects from the never ending treatment..and yet, can often feel like we are the forgotten ones...as if society at large thinks we have found a cure for this disease or that early detection will most definitely save your life, which it might not. If you have a few minutes to read this impactful article, I strongly encourage you to do so. This is the story of not only this young woman, but it's my story and so many of my friends...many of whom I have already lost at the hands of this disease. https://time.com/5689570/metastatic-breast-cancer-research-treatment/ I am so grateful every single day for how well I am able to manage with this disease. Partly because I know that it is not fully in my control and partly because I know all too well that it can always be worse; that one day these rogue cells will once again outsmart my treatment. And with every new treatment, new and worsening side effects will infiltrate my daily life. I make every effort not to live in fear, but I would be lying if I said that the potential consequences of this disease does not scare me. At times it is easy to fall into desperation and anger - especially when you see other women you have come to know and love, succumb to this disease. But that is not the message I want to spread....I don't want to be fueled by these negative, albeit understandable emotions. Rather, I emplore you to think twice before supporting and donating to various organizations this "Pinktober". I ask you to please investigate what you are truly supporting with your mighty dollar when you purchase pink items, wear certain clothing/ribbons, or promote various charities. I don't judge or shame those who buy a pink kitchen gadget in the hopes of it supporting breast cancer research - that was once me! I proudly registered for my pink Kitchen-aide mixer with the assumption that it was going to make a positive impact in some way...and maybe it did! But, this October, please take a minute to consider who you are supporting and why. If you would like to know that 100% of your donation is going towards researching Stage IV metastatic breast cancer, then METAvivor is the only organization you can truly support. #dontignorestageIV #stageIVneedsmore #morethanpinkribbons #metavivor In other news, my recent scans were great! Overall, everything is looking stable and we will take it! Woohoo! This is the face of gratitude, relief and joy! xoxo, Meghan
Scan reports are in and Dr. F gave me the proverbial thumbs up that everything is stable. Woohoo! On Monday, I had another round of scans including a full body bone scan, chest/abdomen/pelvis CT and a thoracic MRI. Three months ago, I had a thoracic and lumbar MRI which showed stable bone mets throughout various regions of my spine and left hip and I was praying for continued stability this time around...so grateful that is the news I received! Now I can return to my 6 month scanning schedule, if all continues to go well. The only hiccup lately has been the fact that my blood counts continue to struggle against the onslaught of my oral chemo that I have been on for the last couple of years. I have been on a schedule of taking my medication for 3 weeks, and then having one week off to allow my body to rebound. As of late, I have had multiple months where my counts just haven't rebounded as they should, even after one or two weeks off treatment. So, earlier this month, my oral chemo was changed to two weeks on/two weeks off. Hopefully, that does the trick to allow my body to rest and recover- allow my counts to come back up so I am not at risk of infections and other side effects. Overall, I have been feeling really good and have figured out how to best manage some of the symptoms that started last summer and continue to be bothersome. I have learned what can provoke some of these symptoms and how to avoid that. I have learned which symptoms I simply have no control over, and how to emotionally cope with that, without becoming overly frustrated or discouraged by it. I have learned how important various forms of self-care are, so that I can truly allow my body and mind to rest and heal, without beating myself up and looking at myself as lazy, weak, or unable to keep up with my ultra-fit husband. I have been super hard on myself most of my life, so this type of thing has taken a great deal of work and patience and I am learning and growing a lot in that arena. Hopefully, I will always be a "work in progress"...learning how to navigate life as I fumble and make mistakes, but ultimately learn from it and grow. This time of year always feels like a "New Years" celebration, of sorts. With the celebration of my birthday and then the anniversary of my diagnosis two days later, combined with the break in the winter weather and the promise of spring on the horizon, it always feels like a time full of hope, anticipation, and optimism about the rest of the year ahead. I am feeling so thankful that some dark days are behind me and that there is a wonderful spring and summer ahead. Dealing with chronic pain is something no one should ever have to deal with. I have a whole new perspective on that and have great empathy for anyone who has had to deal with it. The physical and emotional side effects seep into all aspects of life and have debilitating consequences. By the grace of God, the pain and other various difficult physical symptoms from new tumors in my spine, chronic sciatica, and severe medication withdrawal have been steadily subsiding and I am living life to the fullest again! Thank you so much for the love and support. I feel it, and let myself feel wrapped up in it like one huge, loving hug from so many friends and family, all at once. What could be better?! xoxo, Meg Time for my second infusion of the new medication to help manage my bone mets. Praying it's smooth sailing this month since the side effects were a bit brutal in January. A beautiful bouquet of roses sent from my amazing friend, Kyle. Every year on the anniversary of my diagnosis, she sends a dozen roses, with a white rose turning into a pink one, marking each year of my survivorship. I cherish this every single year and can't believe I now have 8 pink roses and only 4 white!
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