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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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 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 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.
I had a week to think about this latest news, to read the MRI reports and luckily have an impromptu appointment with my radiation oncologist last Thursday when I ran into him at Karmanos while there for blood work and an injection; all before meeting with Dr. F on Thursday morning.
The MRI report and meeting with my radiation oncologist revealed cancerous activity at more than one place in my spine and also elaborated on some of the damage that has remained there for the last few years due to cancer, radiation and other side effects. The good news is that over the last two weeks, the pain in my back has subsided substantially. So while my radiation oncologist said we can definitely radiate this area (even though part of it has already been radiated once), he would suggest waiting to play that card until I absolutely have to. And I agreed. Radiation to the spine carries a great deal of side effects, not only potential damage to the spinal cord, but also damage to surrounding structures. The last bout of radiation I had to my spine left me feeling like I was swallowing glass and resulted in dropping too much weight in a few short days from my inability to eat or drink. My radiation oncologist, Dr. M, assured me I can call him any day, at any time, if my pain returns and I need to get in for radiation. He is simply the best and I am so grateful to have him on my team...and grateful I don't need his care again quite yet! Mom and I headed to my appointment Thursday morning, where we came with a handful of questions, but also a lot of faith in Dr. F and his opinion. Dr. F shared that there are plenty of arguments to support changing my treatment at this point, but just as many to support watching and waiting. These are some of the main points of our pretty long discussion together:
When the study was published in 2016 about the combination of drugs I am currently on, it was hailed as a huge success because the "progression-free survival" rate was 9.5 months. I have been on this treatment for 22 months now so I am extremely grateful for that! And if I can squeak out some more mileage on it, all the better! On another note, I will be meeting with the Phase 1 Clinical Trial doctor at Karmanos in a couple of weeks to see what trials they have. It is a scary thought for me because the phrase "clinical trial" has also felt like the words "palliative" or "hospice"....words you hear when things are extremely dire and there aren't many options left. But luckily, Dr. F explained it to us in a way that made a lot of sense and didn't feel nearly as terrifying. Aside from meeting with the clinical trial doc, Dr. F is going to watch me a little closer for now. I will still have blood work every couple of weeks, injections every 4 weeks, see him every 8 weeks and get scanned again in 3 months instead of 6. I feel in my gut this is the right plan for me at this particular time. I feel good about it - as does Mike, mom and my doctors. So we wait...and we watch...and pray that the pain doesn't return and that these rogue cells chill out and hibernate for a good long while. In the meantime, my blood counts have plummeted once again (never seems to be any rhyme or reason), so I wasn't able to restart my treatment on Thursday. It does explain some of the additional fatigue I have been feeling lately. I will have repeat labs done next Thursday and hopefully restart then. I think that about sums it up. Thanks for all the love and prayers! xoxo, Meg It's not quite the exciting package one hopes for that appeared on the front porch today. No fun new pair of shoes from Nordstrom or random gadget from Amazon. This package is filled with potential to cause a range of symptoms from nausea, vomitting, diarrhea, fatigue, low white blood cell counts and mouth sores...just to name a few. But, this small box of 21 capsules is also filled with hope, potential stability and the return of healthier days. The only thing I do know for sure is that this package is filled with a whole lot of uncertainty. And although I am used to living with a great deal of it, this time the unknown seems a bit scarier. This new medication is one of two new drugs I will be starting this week. This oral medication is called Ibrance, and is also known by the generic name of Palbociclib. Ibrance is what is known as a "targeted therapy". In very simplified terms, targeted therapies aim to attack the cancer cells without harming the body's normal, healthy cells. Therefore, targeted therapies, while they come with their own list of side effects, aren't as toxic as traditional chemotherapy agents. Ibrance is a targeted drug that blocks proteins in the cancer cell which in turn helps prevent the cells from dividing to create new cancer cells. I will be taking Ibance daily for 3 weeks, followed by 1 week off which will allow my body some time to recover and for my blood counts to bounce back up. Due to the high risk of my white and red blood cell counts dropping significantly, I will have blood work drawn every two weeks to make sure I am safe to continue on this treatment. Not only does this week mark the start of Ibrance, but it will also be my first time receiving Faslodex. The drug has the generic name of Fulvestrant and is the intramuscular injection that I will receive every two weeks. The two of these drugs together have shown very promising results in recent studies. You could read about that here. Faslodex is known as an "estrogen receptor downregulator" which means it binds to the estrogen receptor site of cells and causes the receptors to break down, thereby preventing the normal cellular responsen to estrogen. This is important since my breast cancer is fed by estrogen. Even though I am in medically induced menopause, we want to make sure there isn't any other way these cancer cells can by fed by any stray estrongen that may be floating around. I will receive my first injection of Faslodex on Thursday, along with my monthly injection of Zoladex that keeps my ovarian function supporessed. On Friday I will meet with a gynecological oncologist at Karmanos to discuss my surgery to have my ovaries removed. Fingers crossed that I tolerate this treatment well with as minimal side effects as possible. And of course, that this treatment plan is successful! I have blood work next week to check how my counts are responding and will then see Dr. F the week after that to see how I am tolerating the treatment. It sounds like I will have scans in about 3 months to see how things are looking. As always, thank you so much for the love and prayers. Please keep them coming! xoxo, Meg ps - We just got back from a trip to California where I was invited to the Dr. Susan Love Research Foundation Metastatic Breast Cancer Collateral Damage Project. I am really looking forward to sharing more about that soon. But until I have the energy to write that post, enjoy these little snapshots of my free day spent with Mike. :) There is no doubt about the fact that cancer is one sneaky beast. Lurking in the darkness. Slowly creeping up through the shadows and rearing it's ugly head at any time. I have always known this. I have lived this while watching relatives and friends face the disease before I did. But it is another thing altogether when cancer sinks its fangs into you. I have been neglecting the blog so much over the last couple of years because truthfully, all has been relatively stable for me since my recurrence at the end of 2014. Life has been full and busy - just like I have always liked it. Work, photography, travel, family, pups, friends, cooking...fitting as much into each day as possible. This summer I was feeling the best I have in years. One of my bff's and I devoted ourselves to a morning bootcamp class before work and I faithfully attended for about 12 weeks. It felt so good to finally feel more like myself - energized, strong, and comfortable in my own skin. It never ceases to amaze me how quickly that can all change. On September 15th I awoke around 2am to excruciating back pain...the kind that is impossible to describe unless you have experienced bone pain from cancer. I have felt this before and know it all too well. I felt like my back was going to shatter in a million tiny pieces. I woke Mike up and asked him to please try to rub my back in the hopes of some relief. To make a long story short, after suffering through the work day and barely getting through it, I ended up in the ER that night. This started a cascade of events which have led to where we are today. At the risk of skipping some details, but saving some energy, here is the "highlight reel".... ;) -Completed bone scans, CT scans and spine MRI's the last week of September -Learned on Sept 29th that I had progression in my spine at multiple levels which also caused my T8 vertebrae to be fractured -Underwent high dose radiation treatments to my spine every day before work for two weeks which concluded on October 14th -After initially only feeling some fatigue and slight nausea, I encountered severe side effects the week after radiation ended. My esophagus was an innocent bystander caught in the crossfire of radiation and the damage was unexpected and extremely painful. It was not a sore throat due to the radiation burn that you would expect. It was more like trying to swallow glass through a tube that had narrowed down so tight that even water caused ridiculous pain and coughing. It become so bad that I avoided food and liquid altogether; resutling in a 8 pound weight loss over 4 days, along with severe exhaustion and overall feeling like crap.
-Could finally start eating towards the middle/end of last week and have been feeling MUCH better! So, that brings us to today. I went in this morning for a follow up with Dr. F, my oncologist. It is too exhausting to detail right now but basically, I thought he wanted to stay the course on my current treatment because it has been keeping the rest of my body free from disease and limiting the disease to my spine. I was taken by surprise this morning when he immediately stated he wants to switch my treatment plan completely to two targeted therapy drugs. I had been feeling in my heart that it was time to switch treatments but I guess I just didn't expect it today and I wasn't prepared. It unleashed a flood of emotions and uncertainties about the future.... What will these side effects be like? Will this change my quality of life? Will I be able to maintain my normal busy schedule? Will I feel nauseous? Fatigued? Lose/gain weight? Will this work and for how long? What if I have another progression soon and blow through yet another treatment option? What if it doesn't keep the disease limited to the bone? What will happen if this fails? I have been beyond blessed these last 5 1/2 years to maintain a pretty great quality of life despite all I have been through. I don't want to lose that. I don't want to start to head down that road of jumping from one treatment to the next because things have stopped working. I don't want to hear, "there is nothing else we can do for you". I learned tonight that another young friend with MBC was just told those exact words yesterday. She has entered hospice and it's just heartbreaking. The other tough part of today was making the decision to finally have my ovaries removed. My disease is fed by estrogen so my ovarian function has been medically suppresed since I was first diagnosed...first through chemo and immediately following through that lovely shot of Zoladex I receive every single month. Dr. F has always said that there is no real difference between the Zoladex and having my ovaries surgically removed. I told him to tell me point blank if it would better my chances for survival to have them removed and he said the research can't prove that. So, we decided to stay on Zoladex and not rock the boat by having surgery. Well, today he finally said, "If it was me, I would have them out." That's all I needed to hear. I know it will be a pretty straightforward laproscopic procedure, and I am not worried about the surgery itself at all. But it just feels like another huge punch in the gut. Another glaring reminder of all that cancer has robbed from me. I feel like I have been dismantled piece by piece of all that makes me a woman - the loss of my hair, my eyelashes, my breasts, my ovaries, my ability to bear children. It is a pain that runs so very deep and having my ovaries removed opens that wound up...a wound I have tried so desperately to close up and allow to heal. My new treatment plan will consist of two new drugs I will write more about later. They are extremely expensive so I have to wait to start them until I receive insurance authorization and I don't know when that will be. I will take an oral pill daily for 3 weeks and then have 1 week off, then repeat. The other drug is an intramuscular injection that I will receive in the good ole' tush. I will receive it every 2 weeks for the first 3 rounds and then every 4 weeks after that. There are side effects of these new drugs that are highly likely, including a significant decline in my blood counts which will place me at high risk for infections as well as cause fatigue. There are many other possibilities but these are the most likely. I will have blood work completed every 2 weeks to make sure my counts stay in a range that is safe enough to receive the treatment. So this is where we are, friends. This is the plan until this disease starts crawling back up from the darkness and threatening to rock our world once again. But, with each attack it wages, I will beat it back down and chase it right back into the shadows...running it out of the sunshine where I choose to live my life. Please keep me in your prayers. I am feeling a bit overwhelmed and down right now, which is not a place I like to be. Please keep Mike and my family in your prayers. Spefically, please pray for wisdom for our medical team to help us to make the right choices for my care; for strength to endure whatever may come our way; and for faith and perserverance while remembering that we are in God's hands and are loved and cared for every step of the way. I promise to write more soon and keep you all updated. Thank you for always being the most incredible support system anyone could every ask for. It is appreciated more than you will ever know! xoxo, Meg Have you ever had one of those out of body moments where you feel like you are floating above your physical self and somehow watching what is unfolding rather than truly experiencing it? That's how I felt on New Year's Eve during my first radiation treatment. It was almost exactly three years ago that I first laid on that radiation table. I have said this before but it's true in this circumstance as well...some days it seems like yesterday that I was diagnosed and first went through radiation, and other days it feels like a lifetime ago. As I laid on my back in that lovely hospital gown and looked up into the bright flourescent lights, reality struck me and I almost couldn't believe I was there. It hasn't necessarily been smooth sailing, but all in all, I have been doing amazingly well throughout the past three years since I last had radiation. And although I had a sneaking suspicion that something was wrong, it still takes me by surprise sometimes that I am in the thick of things again..waging a full out battle against this disease. Once again, I have nothing but the best things to say about the amazing Karmanos Cancer Institute where I am treated. My radiation oncologist, Dr. M has made me feel very confident in this process and I am grateful for that. Originally Dr. M stated that he really wanted to do a special targeted high dose radiation called Stereotactic Body Radiation Therapy - also known as Cyberknife or Gamma Knife treatment. You can read more about it here but basically it would be a higer dose radiation that only requires 3 treatments and has less side effects. We did the entire simulation for this which required a custom molded cast of sorts of my body which would ensure I wouldn't move during radiation, as well as a bar across my abdomen so that I couldn't take a deep breath which would cause too much internal movement. I had the tattooing done as well so I could be lined up perfectly on the radiation table. During the simulation they also do a few CT scans to determine exactly what the radiation field will be that will receive treatment. Unfortunately, the night before I started radiation, Dr. M called me to say that once he completed the planning after the simulation, he realized that too much of my spinal cord would be within the radiation field. The spinal cord is able to take some radiation, but not at the intensity that the Cyberknife would be. So I have been receiving more tradiational radiation treatment like I did to my chest 3 years ago but thankfully, I only need 10 treatments. I head to radiation each morning before work or on my way home from work and truthfully, it's a super easy and straightforward treatment. It's pretty similiar to what I wrote in my previous post 3 years ago about radiation so if you want to read more details about the entire process, check that out here. I have completed 7 treatments so far and I am so happy to report that I am definitely feeling relief. My hip is feeling much better and although I am not painfree, the difference is truly noticeable and has restored my ability to sleep and relax comfortably while sitting. I am barely taking any medicine for pain and my overall quality of life is significantly improved. So cheers to that!!! Thank you for the continued support. The calls, texts, flowers, blog comments...it all means so much to me. Hope 2015 brings continued happiness and good health for us all! xoxo, Meghan A glimpse at my Groundhog Day routine at radiation.... Here I am! Did you think I forgot about you? A little sneak peek of our adventure in Maui.... A new addition to our family! Meet Gracie! On Tuesday I had my radiation simulation, including another awesome tattoo...
How is it that time just passes in the blink of an eye? All of a sudden, here we are at the end of another year. It never ceases to amaze me at how fast life continues to roll on - no matter what we are dealing with. I suppose that is a good thing in many ways. It helps drag us along during those tough times, until finally we can feel the weight start to lift and the sun shine on better days. As I sit here reflecting on this year, I feel such a mix of emotions and thoughts - all of which culminate to one overriding message. Perseverance. The year has been filled with many up's and down's - which is true for all of us - although especially lately, it seems like the lows have been more frequent and deeper to crawl out of. We have had many blessings including a new home, continued good scans, and countless great memories with family and friends. But, this year has also brought many challenges for us emotionally which have tested our faith and trust in the greater plan that God has for us. The past few months have been the most challenging for me emotionally since my initial diagnosis. Due to a variety of issues, I hit a new low and struggled to even find the joy in each day. For the first time, I truly wondered if I was being punished for something. I felt an overwhelming sense that we were continually knocked down and made to endure heartache after heartache, while it seemed like others around us, received abundant blessings and joy. It is a very dark and lonely place to be. As I have worked through these times, I have simply resigned myself to the fact that our lives will forever be filled with pain and heartache. Living with this disease has impacted our lives in countless ways, many of which I am just now starting to fully understand and experience. The continued physical toll is heavy, but the emotional toll is often times unbearable. I have recently felt as though this can turn you into a pretty selfish person - focusing on how hard you have it - how sad you may feel - how your future will never look like what you always thought it would. I fell down a slippery slope of sadness and guilt and failed to see how I was pulling Mike down right along with me. The one positive aspect of hitting your own personal rock bottom, is that you have no choice but to go up. To make the slow climb out of the darkness and back into the light. It allows you to take time to reflect, to evaluate, and to reset your life's compass back on the path that you would most like to travel. I share these personal struggles not only as a cathartic tool, but to also help remind myself that it is okay if I am not able to feel grateful, positive and optimistic 100% of the time. I have struggled with guilt and feeling like a fraud when I experience these tough times because so many of you always think of me as being so happy and positive. I am trying to release myself of these chains that bind me to the sense that because I am alive, I must be grateful at all costs - because I have lost friends that would trade places with me in a heartbeat. I am learning that because I have been able to stay in remission, doesn't mean the collateral damage of this disease will leave me - and that it's okay and perfectly human to have moments of despair, sadness and even self pity. Yes, I am so grateful - for so much - but this life is also very difficult at times - more difficult than I would have ever imagined. Life is about perseverance. It is about riding the waves of the good times, but being able to pick yourself back up when you get knocked down with your face in the sand. It's learning how to brush yourself off and get back out there to try to ride that wave of happiness once again. Because in the end, those moments of pure joy are worth every second of despair and defeat that may be encountered along the way. - - - -- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Seems like I have sand and surf on the brain, huh? :) Well, that's because Mike and I are leaving for California the day after Christmas. To say that I am excited, is definitely an understatement. We have wanted to take this trip and venture along the Pacific Coast Highway for years and I am so glad we are taking the time to do it. That is one gift that living with disease can give. It makes you realize that there is no sense putting off your hopes and dreams if you have the ability to make them a reality. Do it today. Do it now. We never know what tomorrow will bring. We need this time away together so badly and I cannot wait to see the ocean, and the Redwoods and watch the sunset with Mike by my side. Not only will we be celebrating our 6th anniversary on this trip, and New Years Eve, but we will be celebrating another round of great scans! I saw Dr. F last week and found out that everything still looks great! He is very please and so are we - to say the least! I will continue with my current meds and 6 month scans - no need to change course. Thank you all so very much for your prayers and support. Going through those tests is such an anxiety ridden time, and your loving words of hope and encouragement mean so much to us. Thank you for loving us and supporting us along this journey. We hope you have a wonderful holiday season with your nearest and dearest. We look forward to great things in 2014. See you in the New Year! xoxo, Meg Can't wait to share our images from California in the next post. Until then, a few iphone pics of my beautiful friends, family, pup and yard. :) |
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December 2021
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