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!
Night time used to be my favorite part of the day. The time when Mike and I would cozy up in bed together and I would half jokingly, but half seriously, prod him to tell me his "hopes and dreams" for the future. In a particularly funny voice, I would say it the same way every time, "Sooo....what are your hopes and dreams?" He would always laugh and roll his eyes at me and it became a silly game we would often play. But all joking aside, I loved those conversations about our dreams for the future....where would we want to live, what trips were we going to take, what did we want to name our kids. Mike has always had this incredible way of simply living in the moment and being completely content with that. While I have always been a planner and a dreamer. Not to say I wasn't content with where we were in that moment, but I loved dreaming of the future and what our life would look like. It's one of the most difficult things that cancer has taken from me.
I am grateful that after almost five years of living with this disease, I have learned how to plan and dream again. But it's simply not the same. I have to add little disclaimers to my hopes and dreams now when Mike and I talk about them...."If I make it to 40, let's do _______", or "let's go on that trip next year...if my scans are okay." Have you ever seen "The Secret Life of Walter Mitty"? When I think and dream about the future, it's like a scene from that movie with these incredibly beautiful landscapes, bright and vivid colors....and then all of a sudden it's as if my dream balloon pops and I am struck in the face with the reality of living with an unpredictable disease, and my dreams turn to black and white, void of all the magic in that colorful fantasy world. No matter how hard I try, I cannot dream with the same reckless abandon that I once could.
Of course every situation has two sides to the story and I like to believe there is always a silver lining to be found. Over these last few years, I have come to appreciate living in the moment more than I ever did before. I have learned that I can still have dreams of the future, but instead of 10 or 20 years down the road, I talk to Mike about my dreams for next year and what we want our life to look like. I suppose it's all about learning how to handle the cards that are dealt to you. It reminds me of one of my very favorite quotes....
I am so grateful that many of my hopes and dreams have come to fruition over the last few years. And even more recently, a big one was a family vacation we all took to Mexico the day after Christmas. The older I get, the more I realize that we really don't need much to be happy in this life. All of the material possessions just don't do it for me anymore. I have the hardest time trying to give my family ideas for gifts for Christmas or birthdays. All we really need is to be surrounded by those we love and share experiences that bring us joy and memories we can hold onto.
I was so happy when my family agreed with me last year that rather than exchanging gifts for Christmas, we should take a family trip together. I don't think I had been on a vacation with my brother since I was in the 7th or 8th grade! We all left for Mexico the day after Christmas and not only celebrated the holiday there together, but Mike and I celebrated our 7th wedding anniversary and we all rang in another new year! I am so grateful for this time together and it was a week I will cherish forever.
I have been feeling really well overall. Just dealing with some fatigue that seems to be worse lately and some aches and pains that truthfully probably have more to due with aging and having a physically demanding job. Can't blame everything on cancer I guess. ;) I am scheduled for another round of scans on Monday, March 13th and will get the results that Thursday, on St. Patrick's Day. I am taking that as a good omen for this Irish girl! And hey, if the results aren't good, at least I can drown my sorrows in some green beer, right?! :) Please keep us in your prayers at that time in particular, because I am still enjoying a very good quality of life on these current meds and truthfully, I am fearful that treatments down the road might not be so kind.
I am going to try to make more of an effort to keep up with the blog. Not only to share what has been going on with me, but also because it is a cathartic experience and I think it's important I make it a priority for myself. There are times when I am feeling down that it really helps me sort through my feelings, or look back on all I have been through in order to help give myself a little pep talk to keep on truckin'. I am also grateful it has served as a time capsule of sorts since this journey began and I want to make sure I contine that. I can't believe I only posted twice last year so hopefully I will take some time to document some of the great things that happened, like throwing out the first pitch at the Tigers Game! It was a pretty amazing experience!
So, now here I sit during my new favorite time of the day...the very early morning (of Saturday or Sunday in particular), before the sun rises. If I haven't run myself ragged the day before, I am able to crawl out of bed when Gracie wakes me at 6:00am. The house is dark, as is the entire neighborhood. After feeding the dogs, I start the fireplace and sit with a cup of coffee on the couch. This is the one time of the day where I allow myself to bask in the quiet, in the stillness that surrounds me, and be alone with my thoughts. It is in this time of the day that I enjoy the gift of another sunrise, another day full of hope and possibilities...and that in itself is enough...a dream that has already come true.
ps - Happy Valentine's Day to all of you...just an extra excuse to tell those you love just how much you appreciate them. Nothing better than that. So with that said, I hope you know how much I genuinely appreciate all of you who continue to be amazing friends and devoted family and those who keep us in our prayers even if you have never met us. Sending you lots of love today!
Hey there long lost blog readers. Man, it has sure been awhile. In all actuality, this is really just a test to see who is still checking in on me. If you read this, leave a comment and then I will know to bump you up in your ranking of people I love most. haha, just kidding. I truly can't believe how long it has been since my last post. I remember writing my very first blog entry and commenting that I was going to pray for a time when my life would be too ordinary and boring to even write about and hoped the blog would be short lived. Well, I can't necessarily say that life has been "ordinary" or boring either. But I will say that as the months, and now YEARS have passed since my diagnosis, I am able to focus more of my time and energy on other aspects of my life besides cancer.
I continue to have days or even weeks, where I might struggle a little more...whether it is due to joint pain from my medication, stress about a fellow survivor dealing with a recurrence, or saddness regarding the tough issues and ways this disease has affected Mike and I on a deeper level. But, I have tried my best to work through these times on my own -or by talking it out with Mike or close friends. I will admit that I continue to struggle with a great deal of survivors guilt after losing so many friends to this disease and so it has become difficult for me to log on to the blog and vent about the hard times I am facing. I know those friends would give anything to have even one more "bad day" with the ones they love. The logial part of my brain knows it's okay (and even healthy) to let these emotions out, but the emotional side of my brain tells me to try to suck it up and deal with it more privately rather than feeling pity from others or perhaps subconsciously seek pep talks through you all via the blog.
We are all dealing with tough stuff in life. I don't have a single friend or family member who isn't trying to cope with some aspect of stress, heartache or loss. And although there have been many times where I let myself slip into the darkness of feeling like we constantly get hit blow after blow, worse than many people, I try to do my best to snap myself out of it and count my blessings instead.
On that note, if you are one of the incredible people who has been used to following my story through the blog but I don't know personally; you might not know that I had another round of scans last week and everything looks really good. I am still stable with no new disease anywhere and it looks like this treatment has been working! This is the second set of scans I have had since radiation in January due to my recurrence in my spine. I have been dealing with some new side effects that started in June but nothing too serious or severe enough to make me reconsider this course of treatment. If it is working...keep it coming!
So, I just wanted to say a quick hello and remind you all that I am still here - plugging along as a wife, puppy momma, daughter, sister, friend, physical therapist and photographer. I am staying way too busy and although I am often tired, I am thankful that being busy also means I am feeling well enough to pack too much on my plate.
Thank you to all of you who continue to love me, support me and cheer me on - even when things seem calm and uneventful between scans - because truthfully, you may never know when I am struggling emotionally the most. It comes and goes and seems to hit during the most unexpected times. I promise to try to make more of an effort to show up on the blog more soon because I do think it is a healthy and cathartic practice for me and the love I receive in return is priceless.
Happy Fall - my favorite time of the year!
ps - There have been so many great events and activities I have been fortunate to have been a part of this year. I will definitely post more pics, info and videos soon but for now, here is a recent pic of Mike and I from my brother in-law Dan's wedding a couple weeks ago. It was a gorgeous wedding in Charlevoix and we are so excited to welcome Amber into the family!
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!
A glimpse at my Groundhog Day routine at radiation....
My blog to keep you all