I have started writing a post a handful of times but always seemed to get sidetracked. I continue to have the best of intentions to write more, but truthfully, I haven't made it a priority. Don't give up on me though, friends! :) I still do want to get back to writing more. I have been pouring my energy into a lot of other healthy, self care outlets these days and it has been such a wonderful transition for me. I am taking more time to read some truly life changing books, listen to inspiring podcasts, commit to a daily intention and gratitude practice, spending time with a new therapist who I have connected so well with, take the most relaxing evening baths in our new jetted tub, and continue to make my physical health a priority by cooking healthy meals and exercising. I have committed to all of these things for several months now so I am feeling grateful that these practices have become true habits.
I always put a little pressure on myself to play catch up on the blog if it's been a bit since I last wrote. So, I'll do the Cliffs Notes version....
We had a really nice Christmas spent with our families and then a wonderful week of fun with our favorite Floridians, the Johnson family. They flew up right after Christmas and we spent some truly amazing days up north at the sweetest A-frame cabin in the woods. We checked off all of the best winter activities Michigan has to offer...skiing, ice skating, building a snow man, having an epic snow ball fight, and snow tubing...just to name a few. It was the most perfect week spent with four of our very favorite people!
The day the Johnson's flew back to Florida, I went right back to Karmanos and saw Dr. F, had my bloodwork checked, and received my first dose of a brand new medication which I will get in the form of an infusion.
Dr. F was happy to hear that I had been feeling well, and he said that my scans results showed that all spots were stable and behaving. Great news! Mike and I were very relieved to hear that. But after we received the written copy of my scan results, we felt slightly deflated. Upon reading the report, we learned that the cancer had spread to a few other areas that we never knew about, including another region in my back and my left hip. So, while Dr. F said that things were stable and nothing appeared active and new, this was news to us. We had already left our appointment so I didn't get to ask Dr. F more about it but I assume that these spots looked old on the scans and in turn, everything looked stable. But at some point the disease had spread to these areas and damaged my bones further. So, we felt like the wind was let out of our sails a little bit.
Overall, we were still very grateful for stability and that I was feeling well. But, it's discouraging to see that this sneaky beast continues to creep into other areas and further damage my body. Reading the reports was a little overwhelming and a few of my good PT friends also read them and shared the same thoughts....there is A LOT of widespread damage throughout my spine. I must be more patient with myself and make smarter decisions about not pushing my body too much.
I became incredibly sick later that night and into the early hours of the morning. I came down with the flu, fast and furious. It was a horrible few days with symptoms that I haven't felt in years. And although I didn't think about it at the time, I now wonder if it wasn't the flu at all...maybe it was the new infusion that I received earlier that day. I was taking to one of my nurses a few weeks later when I was in for some shots, and she said that those symptoms can sometimes be a reaction to that drug. I see Dr. F in a few weeks and will be due for my second dose of this medication. I am honestly nervous about getting it again but I'll wait and see what he recommends.
I am scheduled for another round of scans in about 5 weeks, so I will share an update after that. I have truly been feeling really good so I am hopeful that the scans will be uneventful.
Everything else is going well and we feel the same as everyone else living in the midwest...we are sick of winter by now. Ugh. The cold temps and grey days seem to last forever this time of year. But, Mike and I were just chatting the other night about how the days are getting longer and that brings hope of spring which is around the corner!
Thanks for the texts and calls to check in when I was a blog slacker. :) I'm always so grateful for the love and support as we continue to navigate life with this disease lurking in the shadows. And hopefully that's right where it stays, for a good long while!
oh! ps - we celebrated our favorite boy's 12th birthday! We love you so much, Wrigley!
Happy holidays, everyone!
How are we already here? I am sure I say it every year (and have probably even written it here before), but time truly does fly by fast and faster each and every year!
I am happy to report that I am feeling much better than I was a few months ago. The end of the summer and fall brought a type of unrelenting pain that I had never experienced before and it was a true test. Living with chronic pain became one of my greatest fears once I learned the reality of what bone mets can do, and it terrified me to think that the symptoms I was feeling might become my "new normal".
After many weeks of forced rest, which involved little else besides going to work and then straight to the couch or bed, I finally started to have reprieve of my symptoms. Not only did this give me great physical relief, but mentally and emotionally too. On top of that, it allowed me to hold off any potential radiation therapy to my spine.
With each day, I feel stronger and more hopeful that I will get back to where I was. I am not as scared of hurting myself at work while trying to do all I can for my patients. I am able to walk the dogs with Mike each evening. I am back to the gym with modified workouts, and learning how to be more patient with myself. I continue to have some symptoms that remind me that I need to take a rest and sit down for a bit. I am learning that I have to respect these signals from my body and that they cannot be ignored.
The fall and start of winter has been full of enjoying time together, and with family and friends. We took a trip to Connecticut to visit our friends, Beth and Ben and their kiddos, celebrated our nephew's 2nd birthday, hosted over 30 people for Thanksgiving and started a complete bathroom remodel!
I did meet with the team at the Karmanos Phase 1 Clinical Trial program and I'll save those thoughts for another blog altogether. In a nutshell, it was a very eye-opening and pretty overwhelming appointment for my mom and I. Thankfully, it's not a road I need to travel down just yet.
My counts have been good enough to stay on my current treatment and we are praying that it continues to be effective and prevent the spread of any further disease. We will know if that is the case or not after my next round of scans which is on Christmas Eve. Isn't that how we all want to spend the day before Christmas?! I will have scans that day, return on the 27th for my injections, and then again the following Thursday, January 3rd to see Dr. F for results. Please include us in your prayers that these scans show improvement in my spine and no new disease anywhere else!
I will have some pretty great distractions during that time as our dear friends from Florida (the Johnson family) come visit! Brinley and Andy are surprising the boys with a trip to Michigan for Christmas! They have been begging to come up here and see some snow. We are heading up north for skiing, tubing, snowman building and all sorts of other winter fun!
I can't help but feel a real sense of gratitude at how joyous this holiday season has felt for me. As I reflect back, I know that the holidays have been very difficult for me since I was diagnosed with cancer. I used to love Christmas so much but after my diagnosis, it became a time of year that left me feeling sad - whether that was due to wondering how many more Christmas' I would have, or because of how quiet our house felt when it was supposed to be filled with the laughter and chaos of children...it just became a hard time. But this year feels different. I am enjoying every part of it, without feeling stressed, overwhelmed or sad.
I feel excited to celebrate Christmas with those dearest to us....to celebrate another wedding anniversary with Mike...and to enter a new year feeling full of hope and optimism.
Thank you for riding the waves of life with me. And for following my journey, as I am constantly learning, growing and navigating life with a chronic disease as best as I can.
I hope that each of you enjoy the love and joy of the Christmas season and have a very Happy New Year!
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!
It's been a long time...I think that will likely change, and I will start posting more. Until I get some other thoughts together, here is my recent post from facebook/instagram....
The past 5 weeks have been some of the hardest I have faced. I have been living with severe pain which I knew in my gut was coming from a recurrence of cancer. When you have experienced pain that comes from cancer in your bones, you can pinpoint it in an instant. It led to feelings of desperation, isolation & depression. My thoughts were confirmed today when my oncologist shared that I have a new tumor in my spine.
This news opens the flood gate of questions & opinions on what the next course of action is. The truth is that no one knows what the right move is. My doctors can make educated guesses but no two cancers are the same and while someone might respond positively to one treatment, others may not. It all feels like a crap shoot with potentially devastating consequences, and leads me to often feel like a lab rat.
I have been blessed to live these last 7 1/2 years with a good quality of life. This pain has threatened that and has been very eye opening. To make matters worse, Mike ended up hospitalized last weekend with very scary symptoms. After a huge battery of tests, all appears well and he is feeling much better-thank God! But during those hours in the hospital, all I could think about was our life TOGETHER. That I have all I could ever need, as long as he is safe & healthy. In the blink of an eye, it all became extremely clear. I know we will get through this TOGETHER. I don’t know what we will decide about my treatment, but I know with Mike by my side, I can get through anything.
Living with a chronic disease has been the greatest trial of my life. It has taught me so much, humbled me immensely and made what truly matters become crystal clear. While I still stumble & learn as I go, one thing I know is that people living with chronic conditions need support- not just during the obvious times (when they get bad news & undergo surgeries), but also during the not so obvious times. Life is busy & chaotic...but it’s also precious, fleeting & often times hard for those who are struggling. Never underestimate the power that your love can have.
Thank you for the support during the tough times & thank you for the love during the “every day” times.
Today marks six years since I received the news that I had cancer. Six years (and likely quite a few more before I was diagnosed) that I have been living with stage IV metastatic breast cancer. For those of you who know a lot about my diagnosis, you realize what a huge deal this is. Unfortunately, you don't hear of many women living beyond a few years with this diagnosis, even less living more than five years, and here I am at six! And doing quite well, if I do say so myself. ;)
I remember when I first started to wrap my brain around my stage IV diagnosis, I researched all I could about it and searched high and low for stories of women living six or seven years with this. I scoured the internet, went to all sorts of support groups, attended conferences all over the country, spent hours in online chat rooms and discussion boards. I was desperate....desperately seeking a story that could give me hope. A story that would help me feel like I wasn't living in total denial when I dreamed of living more than two or three years with this disease. I will never forget how it felt to finally hear a story of someone not just living, but truly enojoying a good quality of life, six years in with MBC. It was like I could finally exhale just a little bit and it gave me hope that if that person could get there, so could I.
Early on, I set a goal that I just desperately wanted to make it to my 40th birthday. How insane is that to now have the perspective at 29 years old to pray, "Please God, let me at least live until I am 40." I still repeat that same prayer and I am so grateful that on Tuesday I was able to celebrate another birthday and another great year on this Earth. I have five more to go to get to that big 4-0, but I now believe I will be sticking around for quite a few more after that.
You all know that it hasn't been an easy year for me with this disease. In fact, one of the most difficult yet as I dealt with another recurrence, more bone pain, another bout of high dose radiation, a fourth surgery, and the start of a new and intense treatment that has left my counts in the gutter. There have been many emotionally difficult times, where I have truly questioned God and cried out in frustration that this is the road my life has to travel. But as I have said before, the good days far outweigh the bad. The laughter FAR outweighs the tears. And at the end of the day, living with this deadly disease has given me a perspective on life that you just cannot have otherwise...unless you truly have to cope with the thought of your death in an extremely real way.
I am grateful each and every day for the life God has provided for me.
I am grateful for the countless other ways that I am extremely healthy aside from this cancer.
I am grateful that I am able to endure all of these treatments as well as I do.
I am grateful that on most days I am very easily able to count all of my blessings.
I am grateful for amazing friends that help me see those blessings when the days are more difficult.
I am grateful for the medical team at Karmanos Cancer Institute that treat me like family rather than just another patient.
I am grateful for a family who loves me fiercly and would do anything for me.
I am grateful for an absolutely incredible mother who I cannot imagine life without.
And of course, I am grateful for Mike. My insanely patient, loving and supportive husband. I completely mean it when I say I truly don't think I could live this life without him - he listens without trying to "fix" me when I need to vent about my feelings, he lets me cry and break down when I need to, and he makes me laugh harder than anyone else I know. He will forever be the greatest blessing of my life.
Thank you to all of you reading this for loving and supporting me these last six years. Thank you for your prayers, well wishes, good vibes, healing thoughts....whatever the case may be. Whether you know it or not, you have each helped hold me up and supported me along this journey, and for that I am forever grateful.
Let me just preface this post by letting you know that I am feeling pretty drained right now. I don't know about you all, but I fully admit one of my biggest short comings is that I become a hot mess when I reach this point of exhaustion. I am an awful mix of overly emotional, often times crabby, usually extra sensitive, with a splash of pessimism and negativity....sounds like quite the picnic to be around, huh?! So, I apologize in advance if that lovely cocktail of emotions seeps into my writing a bit too much tonight.
Everything went well with my surgery which was just about 4 weeks ago. It lasted a couple of hours and I was able to go home that same day. I spent that weekend resting, catching up on some good tv and becoming obsessed with my adult coloring books. :) I returned to work that following Tuesday for a half day and then went back to my regular schedule for the rest of the week. It was probably a little too soon but luckily I have a lot of great help at work so I was able to take it a little easy. Once I hit the two week mark post surgery, I felt pretty much back to normal, aside from a little soreness at my incision sites, which I still have.
I also restarted Ibrance the Sunday after surgery, which was January 15th. That made recovery from surgery a little harder to deal with the fatigue and a few other side effects from the Ibrance. I had blood work done two weeks later and although my counts did drop, they were safe enough for me to stay on the medication.
Well, the last two weeks have felt especially difficult. I feel like this medication has really been kicking my butt. I am exhasuted in a way that I haven't experienced in years...probablay since back to my intravenous chemo days. Once I reach the second half of my work day, I can feel myself start to hit a wall. By the time I get home around 6pm, I find myself going straight to bed or to the couch. I can no longer commit to any plans during the week and find myself feeling overwhelmed at the thought of more than one committment on the weekends. Most of you know this is the farthest thing from normal for me. I am usually running around doing a million things and enjoying every second of it! To say that this new lifestyle has been difficult for me, is an understatement.
I beat myself up if I don't feel up for going to the gym before work, or cooking a healthy dinner when I get home at night. I get down on myself for not having the energy to do more on the weekends lately and feel guilty if I say "no" to certain invitations or have to cancel plans. It is frustrating and discouraging. A constant reminder of my disease. I hate it.
Today I went in for my appointment with Dr. F which included more bloodwork and my shots of Faslodex. Check out these two beauties that have to go into the tush!
I had already decided I was going to ask to lower my dose of the Ibrance. Dr. F had mentioned to me at our last visit that most patients end up needing a dose reduction because of the way this drug just wipes out bloodcounts and causes some harsh side effeects. I was reassured when he said that the drug is still just as effective at the lower doses so it wouldn't be an issue to drop to a lower dose.
When he arrived in my exam room and asked how I was feeling, I was honest with him that I have been feeling super run down and that my quality of life has not been so stellar lately. He shared my bloodwork results and told me that things are looking quite low. My white blood cells and absolute neutrophil count (ANC) have dropped pretty drastically and are no longer in a safe range for me to continue on this treatment. Other aspects of my bloodwork were low too but these are especially crucial because they are the cells that you need to fight infection and illness. Dr. F agreed with lowering my dosage and said that at this point it is getting dangerous to continue with my counts this low due to my risk of other complications. He has directed me to remain off of the drug for another week in the hopes of my counts coming up a little before I start the reduced dosage. I will have bloodwork done again next Thursday before I am given the "thumbs up" to start treatment again.
None of this was surprising to me, and truthfully, I was almost relieved to see how much my counts had dropped so that I knew my exhaustion and fatigue were justified. Sometimes I am hard on myself and wonder if I am just being lazy and wonder why I can't just suck it up and stop being so tired. I guess it is good to see the numbers to remind myself that it is not something I can control - that significantly reduced blood counts truly wreak havoc on the body and the way it is able to function.
The real kicker today came when Dr. F shared that breast cancer cells were found in my ovaries once they were removed during surgery. I actually completely forgot that they would be sent off to a pathologist and that I would be receiving a report based on those findings. Dr. F said that he wasn't surprised nor was he concerned. He said that he occasionally sees this where although the ovaries were shut down with medicaitons and injections, cancer cells were still found there.
The good news is that they are now gone and that this doesn't really change my treatment plan at all. The other side of the coin is two-fold for me. First, it is a reminder that this sneaky and awful disease is likely lingering all throughout my body. Dr. F pointed this out to me in the way that only he can - where it doesn't sound harsh but still very real with a slight sting to it.... "Meghan, we have always known that you very likely have metastatic cells in many areas in your body. They are just too small to be detected on scans." Ugh. Punch to the gut.
The second part of this news that has rocked me a bit is now dealing with the "should have, could have, would have" nonsense. Should I have had my ovaries taken out years ago? Could that have helped me remain stable longer? Would that have prevented my spine fractured caused from the cancer....which is feed from the estrongen...which is created in the ovaries. See where my mind is going here?
Dr. F had always assured me that the medication management to shut my ovaries down is just as effective as having them removed, and since I was dealing with so many other surgeries and issues, he thought it was best to put that on the back burner. I am in no way upset with him but today I got the impression he is somewhat leery that the medication that shuts the ovaries down is just as effective as having the surgery to remove them. And that is the tough part. I have always taken an aggressive approach to combating this disease and tried to do whatever I could to increase my chances for survival and I have never questioned any of my decisions. I have always felt so confident in the path I have taken and the direction I have gone with my medical team. And now for the first time, I am second guessing myself. I wish I would have had these bastards out earlier. I wish I would have removed the estrogen creating organs years ago.
I hate that so much of this is such a crap shoot.
....Try this drug and we will hope it works.
....Sure it might cause you to lose your hair, never be able to have children, feel like crap, cause neuropathy, make your bones ache...but it might help stop the cancer. And yeah, it might not.
....Don't worry - if it doesn't work, there is another incredibly toxic drug that we can try to see if that works. But it might not.
....We can remove your breasts and your ovaries, but it might do anything to prevent the disease from killing you.
....Let's try radiation to your bones and make them fragile and brittle and hope that helps. But it might not.
....You might have a crappy quality of life for awhile but we will scan you in 6 months and see if this drug is working. And if your scans aren't good, sorry - you just lived like that for no reason at all.
Gosh, it really does suck. I really pray that one day there are better solutions than this. Don't get me wrong - I am grateful that there are so many options and so many treatments and medications to try. But each come with a huge risk. And not a single one comes with a guarantee.
So that's where we are at. I have wrote way too much and babbled on and on. Thanks for bearing with me. Let's all go enjoy a glass of wine and a Thursday night of "Scandal". If you don't watch that, you are missing out! Trust me, you want some Kerry Washington in your life. :)
Thanks for loving me through the ups and downs. Through the blog ramblings too.
Please know that if I am doing a crappy job keeping in touch, it is not because I don't care. I am sorry if I haven't returned your phone call, responded to an email or been able to make plans to get together. I truly am. I value my friends and family so much but please understand that I don't have much extra to give right now. It takes all I have to get through the work day and try to add in some exercise which I know is just as important as the medicine I take. Please be patient with me and know that I am doing my best. I have great hopes that this reduced dosage of my Ibrance will have me feeling better soon!
It's go time, friends!
I got the 'thumbs up' from Dr. F this morning that my counts have increased enough for me to proceed with surgery as planned. Truthfully, I am pretty surprised at how low my counts remain after three weeks off treatment but at least they have come up enough to allow me to go through with this surgery as I had hoped. It is the weirdest experience to almost be 'hoping' for a surgery like this, if you understand what I mean. It was just like the time almost 6 years ago when Mike, Mom, Doug and I waited to see if I got the green light to start my first round of chemotherapy. We were so excited (for lack of a better word) when we found out I could start treatment. Who in their right mind would have ever thought that I would be celebrating the fact that I could get chemo that day?! And who would have ever thought I would be happy to hear that I can get my ovaries and fallopian tubes removed tomorrow morning?
It never ceases to amaze me how much the human spirit can endure and what we can become accustomed to in this life.
I know that I tend to overuse the word "grateful" but it is what comes to mind most often and it's the way I am able to best describe my emotions during many of these twists and turns I encounter. Today, I am not only grateful for elevated white blood cells that are protecting my body as best they can from infection and illness, but I am grateful for the gift of almost 6 years. Almost 6 years to wrap my mind around the fact that what biologcally makes me a woman (estrogen), is also the source of what is feeding the disease that threatens my life. Almost 6 years to discover what physical toll the lack of this hormone takes on the body, decades before God intended it to. Almost 6 years to contemplate what life would look like without the precious little baby we have always longed for....the one who would have his daddy's bright blue eyes and equally beautiful heart.
At the end of my days, I am fairly certain that I will still say that not becoming a mother has been the greatest heartbreak of my life. It is a pain I don't wish upon anyone. A pain that extends far beyond my own...not seeing Mike become a father is far worse than the pain I experience for myself. The pain of not allowing my mom to become a grandma...she would be the absolute BEST grandmother in the world! If you know her well, you know this is true. I could write a million posts on all of the emotions and thoughts I have revoloving around this subject, but the bottom line remains the same. It is not in the cards for us. That is a decision that was never ours to make and I have come to peace with that. Who am I to feel as though I am owed anything in this life? Who am I to question God's plan for me? A life with children was never promised to me. Of course, we grow up believing everything will work out exactly as we plan for it to be, but that is just not reality. It's not reality for any of us. We all have our cross to bear and this is mine. Does it make it less painful? No, it doesn't. But do I shake my fist at the Heavens and get angry at God? No, I don't. I wish life looked different for us. I wish we could enjoy the love of children like all of my friends do. I wish for so many things. But, these years have helped me learn how to be grateful for what has been provided for me and for all of the blessings that I do have.
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We will leave for the hospital at 5am tomorrow and surgery is scheduled to start at 7:30am. I believe it will only take a couple hours at the most. It has been scheduled as an admission and overnight stay but I am hoping that if all goes well, I may be able to be discharged home tomorrow. I intend to spend the weekend catching up on lots of tv and being a big ole' bum. The surgeon told me it is about a 2 week recovery but I think that is just due to some soreness. So, if I am feeling well enough, I am hoping to return to work on Tuesday.
Dr. F would like me to resume treatment of the Ibrance on Sunday. I will go back to Karmanos in two weeks to check my counts and see if I can remain on the treatment. If so, I will see him two weeks after that and again check my counts. The good thing is that Dr. F told me today that nearly everyone needs a dose reduction on this drug due to the effects on the bloodcounts. If my counts continue to drop, he will reduce the dosage and we will go from there.
I can't help but say it again and again...thank you so very much for all of the love and support. I feel so completely covered in prayer, love and well wishes - it is truly heartwarming. I have received so much love and in so many different ways, from family, co-workers, patients and friends. And speaking of my friends...they are simply the best! They put together the most special and incredible care package I could ever have imagined.
I had dinner last night with two of my wonderful girlfriends and they presented me with this beautiful box full of "sunshine". It included a huge stack of envelopes that have a different instruction on the front...."open when you're feeling tired", "open when you are feeling loving", "open when you are nervous or anxious". Each envelope is filled with a letter, passage, note, etc from a different friend of mine. The box has a few other fun items in it that correspond with what is included in a few of the envelopes. I was so touched and blown away with how amazing and thoughtful all of my friends are! I want to save each envelope for when I truly need a little ray of sunshine the most, so I haven't even read them. I have no clue who all particiapted in this special project, but thank you so very very much to those of you who did. And for my beautiful friends who organized it all! My life is truly so much more joyful and meaningful because I am surrouned by such giving, authentic, selfless and amazing friends!
I am expecting tomorrow's surgery to go very smooth and that I will be rested up and feeling back to myself in no time. Thank you for all of the love and concern - for the prayers and well wishes. I know deep in my heart that every bit of it makes a difference in not only my emotional and spiritual health, but my physical health as well!
With love and gratitude!
In typical Meghan Malley fashion, these last few weeks (let's be honest, more like months) have been pretty hectic and jam packed with commitments. I finally sat down last Monday night in the quiet of our bedroom and spent an hour gathering my thoughts and reflecting on what life has been like since starting this new treatment. I was all ready to hit "publish" to share that post with you all when the app on my ipad shut down and the entire post was erased! I could have cried out of sheer exhaustion. I had been running on empty and it took my last bit of energy to dig into my feelings to write a meaningful post and in the blink of an eye it was gone. 'Tis the season for added stress and chaos, right?!
The past week has flown by as we celebrated Christmas with family, friends and co-workers. I knew there wouldn't be any time to re-write my post, nor did I want to expend the energy to do so. So, I am going to skip all the details and give you the ole' Cliffs Notes version. ;)
1. I am on my second round of the new treatment which has been 3 weeks on the meds, 1 week off
2. The side effects have been pretty minimal and definitely tolerable : headaches, occasional upset stomach, shortness of breath, and most notably, fatigue
3. The two shots I have to get in the tush every two weeks hurt! And cause me to feel super sore in my glutes. I try to just trick myself into thinking I put in a killer workout ;)
4. I continue to have the shot of Zoladex in my abdomen every month, the shot of Xgeva to keep my bones strong, and bloodwork every two weeks to make sure my counts are high enough to continue to receive the treatment
That brings me to a recent development....my blood counts dropped as expected after the first 3 weeks of treatment but rebounded during the one week off. I was hoping for the same this round but I just found out that things are not working out quite as expected. I went in to Karmanos before work this morning for a quick blood draw, vitals check and to see my nurse for the bloodwork results. She came and sat down next to me and said, "Your white blood cells are critcally low." She continued to say that she called my oncologist and he instructed her to have me stop treatment immediately. Needless to say, I am pretty disappointed. Of course I have been feeling tired and run down but who hasn't this time of year?! I never expected that my counts would be so low that I had to stop and miss the last week of only the second month of treatment. He wants me to stay off treatment until he sees me on January 12th. That is my next scheduled appointment with him as well as the day I will have another blood draw to check counts, 2 shots in my bottom, 1 shot on the left side of my stomach and 1 shot on the right side. I swear, I feel like a human pin cushion sometimes.
To complicate matters a bit more, the very next day after that appointment where I will be repeatedly poked, proded and stabbed, I am scheduled to have surgery. I will spare you the difficult and emotional details of a rough appointment I had with the gynecological oncologist. Bottom line is that I will be having a "oophorosalpingectomy" on January 13th which basically means I will have my ovaries and fallopian tubes removed. My ovaries have been medically shut down for years but now that treatment has changed, it's as good a time as any to have the surgery just to be sure we get rid of any way my body may allow extra estrogen to be floating around feeding this cancerous beast.
Dr. F had already instructed me to wait an extra week before starting my third round of treatment because he didn't want me on treatment while I went in for surgery. The major risks of surgery are bleeding and infection. The major side effects with my treatment are lowered white and red blood cell counts, lowered platelets and hemoglobin....all put me at risk for increased bleeding and infection. Herein lies the problem. So, now that I have to stop treatment, I will be off for at least 3 weeks - if I am even allowed to resume after surgery. I am hoping Dr. F is just being extra cautious before surgery but I can't help but feel nervous.
Nervous that my cancer may grow during this time off my meds.
Nervous that although I may feel physically well enough to tolerate this treatment, my body may dictate otherwise.
Nervous that my dose may need to be lowered which could be less effective for me.
Nervous to hear that I may have blown through another treatment option.
And ultimately it makes me nervous for the day that I may end up hearing that my body just won't tolerate anything else and I have to stop treatment all together.
I know (at least I hope!) that I am truly far away from that day, but my mind can't help but go there nonetheless. I have had far too many friends here those words and we all know the writing on the wall.
As we enter a time of a new year, anticipated goals and hope for the future...I am feeling a bit scared and fearful of the unknown that lies ahead. Although I am pretty used to dealing with the uncertainty of living with chronic cancer, it doesn't take away those emotions when something unexpected arises.
In the meantime, I plan on enjoying my wedding anniversary tomorrow with Mike. Nine years of complete wedded bliss without any hiccups or bumps along the way....right, Mike?! ;) Boy am I lucky to have him! God's greatest gift to me has undoubtedly been my incredibly supportive, strong and steadfast husband. I am grateful for each and every day I get with him and I will push through any hurdle in my path to enjoy another sunrise with Mike. 9 years married and 18 together! How lucky am I?!
Thursday we leave for a roadtrip to Asheville, North Carolina where we will spend 5 days of fun with some of our greatest friends, the Johnson's, who will be driving up from Florida with their two little boys. I am so excited for tons of laughs, snuggles with the boys, hiking in the mountains, and ringing in the New Year with amazing friends. Mike has come down with a cold and with my extremely low counts, I am worried about getting sick. So if you can sneak a prayer in there for me that I don't catch whatever he has, that would be great! If you are in Asheville this weekend, look for the girl with red hair and a hospital mask over her face. waaah!
I hope you all had a very Merry Christmas! Thank you for the beautiful holiday cards that you have sent to let us know you are thinking of us. I was too lazy this year so here is my digital card for you all....
The dogs may have hated every minute of this but I loved it and can't help but laugh at these cuties. They bring me so much happiness!
I will write a quick update after my appointment on January 12th to confirm if surgery is planned as expected. If my counts don't come up, we will likely have to postpone.
Have a wonderful New Year celebration! 'Tis the season for champagne, confetti and midnight kisses...so enjoy! Keep us in your thoughts and prayers for elevated counts, a safe drive, and a fun (illness free!) mountain adventure with our friends.
A few snapshots of my favorite moments over the last few weeks...including cuddling our nephew, pups enjoying the snow, our beautiful and festive piano and time with some of my favorite girls! 💗
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!
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!
My blog to keep you all