Mike, mom and I arrived at Karmanos on Friday morning hopeful that gamma knife would be the start of the next phase of healing and putting this brain tumor behind me. Unfortunately, we didn't get the news we expected. After a painful set up to screw the metal halo frame into my head, a cage was placed on top and then I was wheeled off to have both a brain CT and brain MRI. Once the updated scans were complete, my neurosurgeon and radiation oncologist came into my room to consult with us.
The news was not only surprising to us, but also to them. And due to how physically awful I have been feeling since, I am going to try to keep this brief and to the point.
Based on this information, my doctors did not feel comfortable moving forward with gamma knife radiation to the original (and largest) tumor. Gamma knife would cause my brain inflammation and swelling to temporarily worsen and it was no longer the safest and most appropriate course of action. We were all incredibly disappointed, but at least thankful they decided to move forward with gamma knife to the other two newer spots that were discovered. I was back home by Friday early afternoon, and truthfully, I have felt the worst I have ever felt in my life since. The decline I have had since even last Wednesday has been shocking. I am experiencing horrendous episodes of pain that shoot from my head, through my neck and back, all the way to my legs that cause my entire body to feel like it's locking up. This induces a wave of panic, nausea and occasionally vomiting and has been happening every few hours. It's frustrating and exhausting and I'm praying for relief soon. Which brings us to the new plan:
I am scared of what's to come. I know too much as a neurological PT and all the potential risks associated with brain surgery. Please cover us in prayer that everything goes as smooth as possible. That I don't suffer a hemorrhage, nerve damage, infection, and a host of other complications that could arise. This is not what we expected, and certainly not the plan we hoped for, but we remain grateful for options, an excellent team of physicians and nurses, and the most unwavering support system in the world. One day at a time....sometimes even one hour or one minute. Praying the next time you hear from me, I am feeling much, much better! xoxo, Meg
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It's been two weeks since my last update, yet somehow, it feels like at least a month has slowly passed by. I'm going to be very honest when I say that this has been an incredibly hard time. I wish I could say that each day I have started to feel a bit better, but that has not been the case. I have been facing quite the array of symptoms and side effects. It has been a daily struggle that has been at times equal parts frightening, frustrating, and humbling. Thankfully, I have an incredible medical team helping me through this and the single best caregiver anyone could ever ask for in Mike. The main thing I am also continuously reminding myself is that this is hopefully all very temporary and that everything will improve once the brain swelling continues to subside and I am able to slowly get off these medications that come with their own host of side effects. Thanksgiving day was the first time I started to feel a little bit of light at the end of this tunnel and began to feel slightly better. We had a relaxing holiday here at the house with our parents, Mike's brother, Dan, and our sweet nephew. It was so nice to be together and celebrate an extra special day of thanks, despite all we are currently facing. Before the holiday, my neurosurgeon lowered the dose of my steroids, in the hopes of offering me some much needed rest. I was thrilled about this news, but looking back now, it ended up back firing. I suffered greatly last week with a significant increase in horrendous headaches, neck tension to the point of not being able to move my head, visual changes, dizziness, lightheadedness and balance difficulties. The frequency and severity of these symptoms increased exponentially and were occurring every 3-4 hours, around the clock. Luckily, my amazing radiation oncologist checked in on Monday and did not like what he heard from me. He ended up tripling up on my steroid dose, and although I knew that would affect my sleep, I did not even care if it would give me relief from the rest of these symptoms. Sure enough, Tuesday night I ended up getting 1.5 hours of sleep, but the rest of my symptoms lessened so it was totally worth it! The scariest side effect lately is that I have had several episodes of severe lightheadedness, where I completely lose control of my legs. They start to wobble and shake and I completely buckle. Thankfully, Mike has been with me each time this happened and has completely prevented me from hitting the ground, and likely becoming significantly injured. As a neurological physical therapist, these kind of symptoms especially freak me out, with what I know about the brain, but again, I am reminding myself that this is temporary and will hopefully improve soon! In the midst of all of this, we have been hugely blessed by so much love, support and bright spots in our days. We continue to be surrounded by the most loving family members, friends, and co-workers -wishing to cater to any and all of our needs. I started to feel well enough to venture out a little each day and was able to visit with my girlfriends, spend time with extended family, and stand in my front yard on Tuesday night in complete shock and awe as I listened to an incredible choir of nearly 60 friends sing us Christmas carols to brighten our spirits as we prepare for this gamma knife procedure! What an amazing and touching display of love and thoughtfulness, all organized by my girlfriend, Sara! I feel like the luckiest girl in the world to be surrounded by so much love and kindness and our words of thanks are simply not adequate to capture our endless gratitude. This morning I had my usual weekly chemo scheduled, and before that, it was my 8 week check in appointment with Dr. F, my oncologist. While he has been aware of our current situation, I haven't seen him in person since everything changed on November 12th.
The benefit of being awake all night on steroids, is that I finally had the time and energy to start to mentally and emotionally process what all this means (my cancer metastasizing to my brain) and consider what I wanted to ask Dr. F about how this may impact my treatment plan and future. I learned over 12 years ago to be careful about Google searches and internet deep dives, but I am also passionate about being my best advocate and being very informed on what is going on with my disease and what the latest treatment options may be. So I came prepared this morning with a list of questions and topics to discuss. Unfortunately, things did not go as planned. After checking in at Karmanos, heading to the infusion center to have my port accessed, and blood drawn to assess my lab work before chemo, I stood up to walk over to the clinic side of the building to see Dr. F and another episode of severe dizziness, lightheadedness, instability and legs buckling occurred. I lost all control of my legs and could no longer stand or walk. Thankfully, I felt it coming, warned Mike and held on to him tightly as my nurse yelled for a wheelchair. They wheeled me over to see Dr. F and eventually I started to feel better. We aren't sure why this is happening but it's likely a side effect of the steroids and I usually start to feel better after laying complete flat, eating some food, and having fluids. Because of how awful I was feeling, Dr. F decided to hold my chemotherapy for today. While I was disappointed to miss a third straight week, I know he is right and that there is no sense to pile this on the day before I am about to have high dose brain radiation. He wants to progress forward on a week by week basis for now and take things very slow; allow my brain time to rest and recover, and know that a few missed chemo infusions is okay in the grand scheme of things. We had a really good appointment and Mike and I both felt better after discussing the situation with him. I will share more of that in a follow up post, as I can tell I am losing some steam. :) The biggest news for now is that we are officially "a go" for gamma knife radiation! I will be arriving at 6am tomorrow morning at Karmanos to start this process! It's expected to be a 6 hour or so, outpatient procedure, so hopefully we will be home by the afternoon. There will be a team of my radiation oncologist, neurosurgeon and other physicists there to run brain CT scans, brain MRI's, screw a metal halo into my head, and set the stage as perfectly as possible to deliver this high dose radiation directly to the cancerous tumor, and hopefully avoid all my healthy brain tissue. The goal is that they are able to get rid of all the cancerous tissue in this "one and done" procedure and that after a likely increase in swelling and inflammation, I will start to feel better over the course of the next several weeks. Mike and I, along with my medical team, are feeling very optimistic and hopeful about gamma knife radiation, and grateful this is an option for me. We would be so thankful for your continued love, support and prayers as we head into this next phase of my healing and recovery. I will be sure to update you all once I am feeling up to it- hopefully sometime soon. I feel surrounded in love, peace, and hope for brighter days ahead. xoxo, Meg This has been quite possibly one of the most difficult weeks we have ever experienced since my diagnosis almost 13 years ago; honestly, maybe in my entire life. I feel overwhelmed even at the thought of trying to summarize everything that has happened, all that we are currently experiencing, and events that are likely to come. So bear with me as I do my best, and be prepared that this is a lengthy one. Last week I battled very intense fatigue that was out of the norm for what I have previously been experiencing on this chemotherapy regimen. I struggled to make it through each work day and found myself in bed by 6pm each night. When I arrived to chemo last Thursday, I reported my symptoms to my nurse, who could tell I felt lousy. All my nurses usually tease me for immediately busting out my computer and diligently typing, working, and holding meetings throughout my hours in the infusion center. But not last Thursday. They were concerned about my symptoms, and ended up discussing the situation with my oncologist, Dr. F. I suspected my bloodwork would show decreased levels that might account for my symptoms, but the lab values were good. Dr. F. made the decision to hold my treatment anyway and not pile on to what I was experiencing. He said he knows I never complain, I am very in tune to my physical symptoms, and that one week off from chemo would likely do me some good. After experiencing a few other symptoms on Saturday, I started to wonder if I had a virus of some kind. I even took a Covid test on Sunday morning, which turned out to be negative. Shortly after taking that test, my situation took a very scary turn for the worse. I felt nauseous and raced from the living room to the bathroom, but that is the last thing I remember. Thankfully, Mike was home and found me slumped on the floor, where I had vomited. He scooped me up, I started convulsing, and became unresponsive to him. I had experienced a seizure, one of what we now know to be two or potentially three seizures that day. Mike acted quickly to call 911 but I asked him to reach out to Dr. F first to see if we should go to Karmanos downtown, instead of the nearest hospital, so that my medical team and the emergency team could have shared access to my medical records. So that's what we did- headed downtown Detroit to the hospital. I struggled the entire way; retching into a Tupperware bowl, and crying to Mike about how he doesn't deserve this. Through tears and immense fear, I sobbed about how he deserves nothing but a happy life, a healthy wife, one that could make him a proud daddy- not this; anything but this. I prayed out loud - more like begged and pleaded to God, to see us through this and allow everything to be okay. sWhat ensued after arriving at the hospital was nothing short of painful, scary, and heartbreaking and resulted in two days spent in the ER, before a bed opened so I could be admitted. The blur of those days is intense, with countless nurses and doctors, tests, meds, and monitoring...but the end result is serious and significant. An immediate CT scan of my brain showed a mass and substantial swelling surrounding it. A follow up brain MRI nearly 30 hours later to get a more detailed look confirmed our greatest fears. I have been diagnosed with a brain tumor, which is likely metastatic spread from my breast cancer, and the culprit behind my seizures and symptoms. Aside from the obvious fear of losing my life to metastatic breast cancer, the worry about the disease spreading to my brain has been my greatest fear. When breast cancer becomes metastatic (stage IV) it usually spreads to the bone, liver, lungs and brain. Now here we are with three of the four checked off. While I know it is such a miracle I am still here all these years later, it also feels like time has just accelerated exponentially since the progression from my bones to my liver, and now to brain involvement; it terrifies me beyond expression. I am so blessed and abundantly grateful to be surrounded by incredible medical professionals. Between the internal medicine, oncology team and neurosurgery teams downtown, combined with my current medical oncologist and radiation oncologist, I knew I would find some semblance of relief once a plan was devised. Yesterday, the tumor board (a group of doctors and specialists) met to discuss my case and the two best options.
They ended the discussion leaning towards gamma knife, as long as I was okay with that. Gamma knife is a much less invasive, one day outpatient procedure and easier recovery. The goal is to get all of the tumor out but if symptoms potentially arise from more swelling or growth, I will need brain surgery after all to fully remove as much of the tumor as possible. I agreed with the plan to move forward with gamma knife radiation. I am on a slew of medications right now, which are quite frankly, making me feel lousy. The neurosurgeon wants to increase my steroids for the next two weeks to try to get the swelling down as much as possible leading up to gamma knife, which will likely be 11/30 or 12/1. Following the procedure, I will remain on steroids to make sure the swelling isn’t worse, will receive brain MRI's every 3 months, and stay on anti-seizure medications for 6 months. In addition to all of this, I resumed normal chemotherapy today and also received my 3 month heart test to see if my heart function is still good after this intense cardiotoxic chemo. As much as I am honestly feeling pretty horrible right now, I was relieved to receive the chemo that we know has been keeping the bone and liver mets at bay. I pray it continues to work, that my heart is healthy, and that I have not blown through another treatment option. Last but most certainly never least, I want to extend my hugest heartfelt thanks and gratitude to this man pictured here...the only one who could help crack even the smallest smile on my face during such a devastating time. Mike, you are an absolute Godsend and I cannot even imagine where I would be without you. Your love, compassion, empathy, and care knows no bounds and I am forever thankful to have you by my side during all of life's greatest times, but especially during these most challenging ones.
I also owe a huge thank you to my mom for dropping everything to care for our pups and race down to the hospital to be with us. No one flies into momma bear mode to protect her baby like retired nurse, Momma Jan. We also have an enormous army of family and friends who have inundated us with calls, texts, meals, flowers, offers to help with the dogs, and provide any other form of assistance they can. We both feel beyond blessed to be surrounded by so much love and care. I could never get through all of this without you. One day at a time. Love you and thank you for loving me. xoxo, Meg This summer was filled with many great moments with family, friends and our little family of 4. We made time for the things that bring us joy and created a lot of wonderful memories. But Mike was right when we were walking the dogs the other night and he simply stated, "This year has been hard." In truth, it's only been 6 months since things really changed with my health, but at times it seems like it's been much longer. I am grateful that I am handling treatment well, but it's also draining and challenging scheduling my life around weekly chemo, battling fatigue, and feeling fearful about the future. It's hard for me to notice the way cancer is progressively chipping away at my life- the way I feel short of breath walking up hill with Mike and the dogs each evening, the fatigue I feel at the end of the work day, the changes I notice in my own reflection in the mirror each morning. All of this has weighed heavy on us over the last 6 months and while I am always trying to be optimistic, I know it is also healthy to acknowledge the truth and reality of the situation. The past few weeks have brought added anxiety as my first set of scans since being on this treatment approached. I have had daily headaches and jaw pain which I am hoping is simply attributed to the underlying stress of knowing how significant these scans are. Two weeks ago I underwent a MUGA scan to assess the impact of this treatment on my heart function and last Wednesday I spent a full day at Karmanos completing the usual battery of body scans.
Last Thursday, Mike joined me for an early appointment with Dr. F to get my scan results. It is with the greatest sense of relief and gratitude that I report my scans were good! What a huge exhale from Mike and I. We truly needed this good news more than ever to help boost our spirits and add a little wind to our sails. The scans showed that the many areas of bone mets are stable or healing and the tumors in my liver actually shrunk! Additionally, my heart scan looked good with no significant decline in my heart function since starting this chemotherapy regimen. I can't even articulate the wave of relief that washed over us. It's truly a challenge to describe this feeling in words - one where you feel like your life and future truly hangs in the balance. The one consideration is that while this is indeed working, I am already approaching the lifetime limit on how much Adriamycin a person can safely receive before it has a negative impact on the heart, and can ultimately cause heart failure. So Dr. F has decided to reduce my dose and continue weekly chemo (this drug combined with another) and stay the course as usual. He will continue to monitor my response to treatment and my heart function with scans every 3 months. So there you have it folks....some really good news! Hallelujah! Boy, did we need it and I am sure grateful. We celebrated while enjoying a weekend away in Saugatuck where we celebrated another beautiful wedding, enjoyed Lake Michigan, and slept better than we have in awhile. :) Thank you for your continued support, love, and prayers. We are always so humbled and thankful. Here's to breathing a big sigh of relief for the next few months! xoxo, Meg For most of my life, I have been an avid journaler. At one point, I had boxes and boxes of journals dating back to at least 7th grade. I have a vivid memory of purging things one day and deciding I was going to get rid of all the journals. My mom emphatically begged me to save them and promised me a day would come that I would regret throwing them away. Of course, I thought I knew more than her at the time, but as usual, she proved to be right. I really wish I could take a trip down memory lane with those journals right about now. Ever since these last scan results, I haven't been able to bring myself to journal. It's normally my favorite way to start the day - grabbing a warm cup of coffee, cracking the window to hear the birds chirping, and curling up in a living room chair with a cozy blanket before Mike and the dogs get up. It's a practice that has always helped me feel grounded and present - a time to reflect, process and practice gratitude. I keep waiting for the feeling to return - to want to sit down and get my thoughts and feelings out on paper. But truthfully, that feels exhausting to me right now. I think there has just been too much going on and so much to process that it feels overwhelming to even try to sift through it and write - whether it's in my journal or here on the blog. I will say I am emotionally feeling much better as time has passed, but this last news devastated me to my core in a way I haven't felt before and induced a level of fear I had not previously experienced. While I haven't felt up to sharing a lot, I am also so grateful people care about me and want to know how I am doing. Four weeks ago, after increasing hair loss, I asked Mike to shave my head. I had a lot of emotional build up about this - not only about how obvious it would now be that I'm sick, but also fear that I might never see myself with hair ever again. If this treatment works, I will stay on it indefinitely - which means I will remain bald. It's a very surreal thing to think about the fact that you may never see yourself with hair again. I felt a wave of relief once Mike actually shaved my head and this step was behind me. Although it's still a very vulnerable feeling to be bald, I am getting more used to it each day. I am thankful to report that I have been tolerating my weekly chemo infusions well. I have continued the cycles of treatment every Thursday for three consecutive weeks, followed by one week off. The main side effect I am dealing with is fatigue, which at times is incredibly frustrating and most definitely impacts my overall quality of life. I am doing my best to continue to work full time, spend time with family and friends, and prioritize my health and wellness. A lesson I am continually reminded of is that no matter how hard things get or how difficult they may seem, life does go on. The shock and sadness of devastating news eventually starts to subside and we start to sink into a "new normal". So I'm continuing to do my best to enjoy the small things that bring me joy like daily walks with the pups, saving my energy for weekend fun with those I love, and desperately trying to extend myself grace when I run out of energy and know I need to rest.
Life goes on.....the hard, the sad, the scary....but also the joy, the laughter, the memories. August will be our busiest month of the summer with a much needed vacation, two weddings, a wonderful event benefiting Hope Scarves, my brother visiting, and Mike's birthday. I'll find out exact details later this week when I see Dr. F, but I'm pretty certain that my first round of scans since starting this treatment will be at the very end of August or early September. I know the scanxiety will start to build as soon as that is on the calendar. But once again, we will remember that life goes on and we will continue to find joy in the in between. xoxo, Meg The last two weeks have felt like an avalanche of thoughts and emotions. I have been spending a lot of time trying to navigate through it in my own mind and having some very difficult and honest conversations with close family and friends. I have tried to carry on as usual and had a lot of fun over the last two weeks between Memorial Day weekend festivities and a getaway with my undergrad girlfriends - but I would be lying if I didn't say this latest news has remained at the forefront of my mind. It has felt like a pot of boiling water, bubbling up to the surface, ready to overflow at any second while I struggle to quickly fit the lid back on and push down all the scary thoughts before they consume me. Thoughts about what this could all truly mean, what if the next treatment doesn't work, what happens when there aren't more options, is this the last time I will enjoy feeling relatively healthy, how much time do I have, what will happen to Mike, to my mom....it's overwhelming and all too real. This is the most scared I have felt in the last 12 years since my initial diagnosis. I knew I would be able to start feeling a little better once we had a plan. Today we decided upon one. Mike and I met with Dr. F today and he shared that the results from my cardiac test came back great. So thankful for positive news! His recommendation was to start a new chemo regimen of adriamycin and cytoxan, with treatment every week for three weeks, followed by one week off. While I did set up an appointment with the Phase 1 clinical trials team for next week, it doesn't sound like there is anything incredibly promising for me there so this is our best chance for some stability right now. After a lengthy conversation, we all agreed on this plan and I headed to the infusion center to get started. What a weird feeling and full circle moment to be returning to the same two chemo drugs that I first started with all those years ago. But as I've said to Mike and Dr. F - I feel a little relief about facing the devil I know vs. the devil I don't. I've taken these drugs before. It was tough, but I did it. I handled it once and I will do it again. So, one round down - hopefully many more to go! I will stay on this for at least three months as long as nothing unexpected happens. After that, I will have scans again to see if it's working. So, we are first praying that my body handles this treatment well, that it is effective, and that I can stay on it with a healthy and strong heart, as long as possible! Oh, and they expect I will start losing my hair in the next 2-3 weeks. I'll save my thoughts on that for another day. I'm wiped out after 5 hours at Karmanos today. But I will say it's bothering me more than it did 12 years ago to think about losing my hair. It's not about the actual hair, it's about the mental game it plays on you when you start to "look sick". There is no forgetting about cancer or pushing it to the recesses of your mind like I've been fortunate to do for many stretches of time over the years. I am so thankful for such an outpouring of love and support after my latest update. When things get especially hard, it's all of you that keep our spirits up and remind us we have a huge community of support and we are never in this alone. I am truly so grateful for every single thought, prayer, well-wish, comment, text, call, note, meal - the list goes on. I love you all and thank you from the bottom of my heart for continuing to be on this journey together with us.
xoxo, Meg I gently close my eyes
Long, deep inhale through my nose Allow my belly to rise Rib cage expands Diaphragm drops Pause. Slowly exhale through pursed lips Feel my shoulders lower Release the building tension Willing myself to focus on this alone Deep inhale Slow exhale Just breathe The wait is longer than usual Alone in this exam room Just breathe I know him well enough after all these years to sense the results before he speaks. "It's not the news we hoped for." I softly close my eyes Just breathe "Are you having more bone pain? The bone scan shows many areas lighting up...." "How have you been feeling? The liver tumors have grown...." He keeps speaking... Progression Chemo isn't working A couple other options That one could damage your heart This one is too similar to the last Perhaps a clinical trial "Do you want time to think and decide?" Just breathe I calmly listen and try to absorb what he is saying I ask questions and confess I am nervous about a clinical trial I think of all the friends I have lost to this disease and how it started to go downhill for them. I hold it together, until my voice breaks as I say, "This feels like the beginning of the end." Just breathe He stares blankly and then reminds me how healthy I am despite it all My labs are good. My liver is functioning well. "It's a matter of your perspective", he says, "but I don't think it's the beginning of the end." Just breathe He will reach out to the phase 1 clinical trial team to see if there is anything I may qualify for. He is heading to the American Society of Clinical Oncology annual conference next week. Perhaps there is promising research to be shared there on another new option. He has had patients do well going back on adriamycin and cytoxan, the two chemo drugs I started with 12 years ago. Weekly infusions, hair loss, and potential heart damage. How do you decide when there are no guarantees? Next week I will have a test to assess the function of my heart. Not only will this show what kind of shape it's in after all these years of treatment, but it will be a new baseline in case I resume the cardiotoxic adriamycin. Then on June 8th I will meet with Dr. F to review those results, and make a decision on how to proceed from here. I am feeling weary, sad, and scared of what lies ahead. But I know these feelings all too well. I will keep going - one day at a time. Just breathe. xoxo, Meg It's been five weeks since the difficult news of my last scan results and the #1 thing I have been wanting to share is simply, "thank you"! I truly mean it. Thank you! Thank you for the overwhelming amount of love & support texts & phone calls blog comments & DM's thoughtful check in's at work heartfelt cards & care packages home cooked meals & porch deliveries offers to join me at chemo or help in any way we need. The consistent and unwavering support Mike and I have both received is truly remarkable. There is no way to fully convey our gratitude and appreciation and to let you know what a difference it makes. I know every single person has a lot on their plate these days and is busier than ever. For you to take time out of your life to think of us means so much. My port placement procedure went off without a hitch a little over three weeks ago. It has healed nicely since this picture was taken, but it's still sore and a bit uncomfortable. I'll get used to it over time. The first round of chemo went well too. It was a long day, followed by an incredibly busy weekend filled with love and get togethers from family and friends so the fatigue definitely hit me by the end of the weekend. Unfortunately, I also caught a really nasty head cold that lingered for two weeks and zapped my remaining energy. I get frustrated with fatigue and hate needing to slow down or scale back on things I want to do like exercise, cook healthy meals, and say "yes" to all the things. But other than that, I truly have no complaints about chemo so far. This time of year is always extra sentimental for me since my birthday and the anniversary of my diagnosis are only two days a part. Ever since I was a child, my mom has made a big deal of birthdays, and I've always loved that. And of course, nothing puts birthdays into perspective like a a stage IV cancer diagnosis can. Each birthday celebration is truly the greatest gift I could ever receive. Thank you to everyone who shared sweet birthday wishes! In addition to my birthday, this week is always met with the anniversary of the day I was diagnosed with cancer - March 23, 2011. This one moment in time has divided my life into what feels like two separate worlds...life before cancer, and life after. I guess it was a rebirth and forced me to become a new person in many ways.
One of my very best friends, Kyle, is the most thoughtful person on the planet and has been sending me a dozen, stunning, long stem roses each year on March 23rd...one pink rose for every year I have battled on against cancer. Each year, one additional pink rose, and one less white. We always talked about how amazing it would be to reach the day when the entire bouquet would be pink. What a milestone that would be! That day was today - I made it! Today, Kyle came to visit me during chemo with this gorgeous bouquet in her hand. A dozen pink roses. 12 years. It makes me emotional just thinking about it. Twelve years of cancer and so many hard times emotionally and physically...but twelve years of soooo... much good LIVING! While the road ahead continues to be uncertain, I am filled with love and gratitude this week. And with that...I'm signing off my long winded post to get back to that - living! We are gearing up for a little adventure to Austin and ready to explore a new city and make more memories. Chemo can't hold me down for long! xoxo, Meg Although I haven't posted an update on here in over a year, most of you likely know that I have been fortunate enough to have had good scans since then and have remained on Xeloda, an oral chemotherapy regimen. While Xeloda comes with some challenging side effects, it has been completely tolerable for me. The hardest part has been what is called, palmar-plantar erythrodyesthia, also known as hand-foot syndrome. This is a side effect of certain chemo drugs that causes redness, swelling, blistering, burning, and peeling on the palms of the hands and feet. While I have experienced pain and discomfort, I have learned how to live with it and not allow it to limit me too much. I was hopeful I would be able to remain on this drug for years to come. That will not be the case. Thursday morning I received some really difficult scan results. The tumor in my liver has doubled in size and my bone mets have spread like wildfire. Cancer has now infiltrated my cervical, thoracic, and lumbar spine, sacrum, pelvis, hips, femurs, shoulder blades, clavicles, arms, and even my skull. Several of these areas were already affected by the rogue breast cancer cells, but many are new, and it is frightening. It is abundantly clear that the treatment I’ve been on for the last year and a half is no longer working. One more treatment option now off the table. My only remaining options from this point forward will involve IV chemotherapy. I leave for California tomorrow afternoon for a work trip and won't be back until next Sunday. So first thing Monday morning, February 27, I will have an outpatient surgical procedure to have a port placed in my chest. Twelve years ago I had my first port put it and wrote about it here. It's pretty crazy to go back and read that post because many of the emotions I was experiencing then, mirror much of what I am feeling now. It felt like such a victory to be able to have the port removed a year later so learning I had to get a new one put in, felt like a gut punch in a way I didn't expect. It's such a visual reminder that I am in treatment - that I have cancer - that I am sick. And I hate that. On Thursday, March 2, I will start IV chemotherapy. The new treatment plan will involve an infusion once every three weeks, so that my body has time to recover between rounds. The main side effects of this drug are nausea, fatigue, anemia, pneumonitis, low white cell counts (higher risk of infections). There is about a 50% chance I will lose my hair. I have shared this news with my closest circle, and then allowed myself a few days to really process it all. I am proud of the inner strength I know I possess, and thankful that I am an optimistic person by nature. But I would be lying if I said this wasn't tough.
Life carries on and so have I - working the rest of the day Thursday and Friday, going to my hair appointment, cheering on our cousin at his lacrosse game, brunch with girlfriends that we have had planned for weeks. Those moments I am able to be distracted by the usual busyness and joys of every day life. But it's the moments in between, alone with my own thoughts, that the tidal wave of emotions and fear comes rolling in. I worked so hard after my initial Stage IV diagnosis to reach a place where I could let myself have hopes and dreams again - where I believed it would be okay to plan for a future. As more years passed, I started to believe it more and more and it started to feel less like a pipe dream when Mike and I would talk about things like owning an A-frame cabin up north, or where we would go in the winters when we could be snowbirds one day. I still have so many dreams - so much I want to plan - things I want to do - memories I want to make - thousands of days I just am begging to wake up next to Mike and fall asleep holding his hand. I am terrified to leave him and to leave my beautiful life. And there goes the spiral of thoughts that I am working so hard to push back. Scared if I let myself dwell there, I won't be able to pull myself out. My goal is to stay as present as I can, for as long as I can. Today, in this moment, I feel just as good as I did four days ago before the this news was dropped upon us. I will try like hell to remain tethered to the present, to not live in a place of fear or what if's - to not waste my precious time that way. But I am human, and it is hard. So that is all I know for now. I am sure more updates are to come. Please keep us in your thoughts and prayers. I am so grateful for our incredible support system that reaches far and wide, and buoys us up during such difficult times. It means the world. xoxo, Meg "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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