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 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!
Yesterday, I was introduced to NED! "No evidence of disease"!!!!
I saw Dr. F for my results of my latest round of scans and immediately burst into tears when they told us that the scans looked great and that I was still boring just like 6 months ago. :) But, what shocked me even more was the fact that the bone scan said there was no evidence of metastatic disease in my bones! Well, hello there NED!!!!
Now, let me please explain that Dr. F doesn't put a whole lot of stock in those words. He said he doesn't get "overly excited or impressed" and that these scanning machines are not perfect. He says it's much like looking down from an airplane and trying to see a dandelion in a field. It's near impossible to spot just one but if there are a lot of them in a big patch, you can see them easily. So, he basically means I still could have little isolated cancer cells in my body but right now there isn't enough of them to be detected on the scans. I have always understood this and I am okay with that. I understand that sometimes people hang their hats on "NED" and then they have a scan a few months later that shows a change and they have a huge let down after feeling like they were as close to "cancer free" as possible.
I truly understand that and I have always been happy to hear that I am "stable"...but for right now...for just a few days (or months)...I am going to be extremely thrilled that I am hanging out with NED! I know it doesn't mean I am cancer free or that I am cured. It means that right now my medicine continues to work and keep me in remission. It means that I can continue with my current treatment. It means that my bones, although still damaged, are healing. And most importantly, it means that I can continue having a really amazing quality of life. The few side effects I experience from my meds (hot flashes, fatigue, joint aches) are so minimal in the scheme of things and I don't let a day go by where I am not grateful for that.
There are still little things we will keep an eye on. My platelets are on the low side and I have been having a lot of issues with bruising. If those continue to drop, I will have to have a bone marrow biopsy to see if my meds are impacting my body's platelet production. There are a few other minor issues I have been having but nothing big and nothing that Dr. F is really worried about.
THANK YOU, THANK YOU, THANK YOU for all of your support, love and prayers! I couldn't be happier and couldn't be more grateful. I do believe in the power of prayer - I believe in God's ability to work miracles and I am not giving up the faith that maybe there is one in store for me. It has taken me this long to truly be able to even put those words out in the universe, but maybe - just maybe, I could live a long, healthy life in complete remission without this awful beast robbing me of my future.
For now, I am believing that this can happen for me and I will continue to fall asleep each night with a smile on my face...dreaming of NED. ;)
With a grateful and overjoyed heart,
I'm having a tough time getting into the Christmas spirit this year. I don't know why or what that's about. I think I just feel tired. I keep waiting for the day that the fatigue is gone, but it just seems like I will never feel the way I once did. Maybe I just need to come to terms with that, huh? Everyone keeps reminding me that it's normal to feel this way and that my body has been through so much - and I know all of that - it's just frustrating at times. Dr. F says that for every round of chemo you have, you can expect 1-2 months of fatigue....so, 15 rounds of chemo x 2 months of fatigue/round = 30 months! 2 1/2 years of lingering fatigue - sheesh! I know things could be worse and I don't mean to complain, there are just times where feeling this way starts to bum me out. It has been very hard to come to the realization that I just can't do things like I could before. It has hard to realize that putting in just a 6 hour work day can leave me feeling totally drained. It makes me wonder, if we were somehow able to have children one day - would I truly be able to care for them the way a good parent should? It breaks my heart a little bit to think the answer to that question might be "no".
When the fatigue really sets in, he seems to bring along it's good friend "Ms. Extra Emotional". I am just feeling a little bit more emotional and anxious than normal, but I am sure that also has something to do with the stress of the holidays and the fact that my scans are coming up next week. It seems like I am feeling more nervous about my scans this time, but I am sure I have felt like this before every other round of scans too. I feel a little scared that if they don't come out good, I will blame myself and beat myself up for it. I have felt so tired lately that I haven't been working out and I haven't been cooking and juicing as often as I usually do. I have still been eating pretty healthy, but we have definitely been indulging in some treats over here. I am well versed on how diet and exercise can affect my disease, and although I don't obsess over it, I have been beating myself up about it lately. I don't want to put blame on myself if my disease does end up progressing, but right now, I am worried I might feel that way.
There seems to be some misconceptions out there about what life is like once you are diagnosed with cancer - and I admit, before I was in this position, I was guilty of believing many of them. Like you have maybe a rough year or two and then your treatment is over and life is just exactly how it was before. Story over. Happily ever after. Period. Well, even though I have been blessed with good scans and haven't required changes in my treatment plan, life just isn't ever the same. There are always hurdles (big and small) that no one can prepare you for. I am guilty of thinking my friend, Meredith (who also lives with cancer) must have always been doing so great because "she looks wonderful in her pictures on Facebook". Ugh. How many times do we hear, "but you look so great" even though we might not really feel that way. Yes, I am thankful that I don't look exhausted or look like I have a throbbing back ache but that doesn't mean that those things aren't happening. We just don't post pictures on the days were we might look and feel pretty rough.
I guess that's why this transition has been so difficult for me. Although I knew this wasn't going to be one battle, but rather a very long and continuous war - I must have still thought that once the initial blast of chemo/surgery/radiation was over, that I would feel perfect again. I didn't expect to battle this much fatigue for so long. I thought I would be able to work more by now. I thought I would be able to clean my house, run errands, and cook dinner without my back throbbing by the end of the day. I thought I could go back to getting 7 hours of sleep and that I would wake up feeling rested - rather than experiencing burning eyes, body aches and exhaustion from the moment my alarm goes off.
I am hard on myself. I admit it. But that's just who I am. I have always held myself to high standards and have been able to accomplish anything I want - and this is a tough pill to swallow to not have any control over how this fatigue continues to plague me. Does it completely limit me and diminish my quality of life - no, definitely not. I continue to be busy and fill up my social calendar like crazy because I refuse to just lay down and hibernate. But, it's frustrating nonetheless.
I know I have said this many times, but I am truly BEYOND thankful for Mike. The bottom line is that I couldn't do this without him. When my back hurts, he massages it. When I am exhausted, he grocery shops, cleans the house, does the laundry, cooks dinner. When I am beating myself up emotionally, he reminds me to be gentle with my broken heart and spirit. He is everything to me.
I also want to give a little extra thanks to a few of my amazing friends. You know who you are -- the ones that shoot me a quick text to see how things are going or to say they are praying for me, the ones that make the effort to make plans so we can spend time together, the ones that let me talk their ears off on the phone or when we get together - even if it's about sad things like this damn disease. I truly feel so blessed to have such amazing, inspiring, and thoughtful friends in my life.
Please keep my family and I in your prayers this next week as I head in for my scans on Wednesday morning. It will no doubt be a bit stressful, but I pray that we are learning to navigate these waters with a little less anxiety and fear than we have in the past. I won't get my results until January 3rd. I could have tried to get them earlier before Dr. F goes on vacation, but I wanted to enjoy the holidays without the fear of bad news. So, please pray that we are too overcome with the holiday spirit and joy of being surrounded by family and friends to worry about these results.
Thank you for your continued love and support.
Addendum 12/14/12 - After going back and reading this post, I just want to add that I do feel very good most of the time. And, I don't mean to complain. It just so happens that I usually feel the urge to blog when I am a little bit emotional. It always helps to release my feelings and emotions this way but I hate to sound like I am complaining so much. I am grateful that I feel as good as I do and that I have a great quality of life - despite the annoyance of the fatigue. Thank you for understanding and bearing with me as I try to relay the realities of what my life is really like, while also expressing my gratitude for the many blessings that I know I have.
And because a post is always better with pictures....a quick glimpse into my recent happenings over the last couple of weeks, courtesy of my lovely iPhone....
I couldn't remember if I had a previous post with this same title, but it doesn't even matter if I repeat it because there is no better phrase to describe how I feel lately. I am exhausted. Wiped out. Completely drained. I don't think all the effects of radiation hit me until the very end, and now that they have, I am reminded of what true fatigue really is. It is much more than feeling a little sluggish, having heavy eyelids, or wanting to kick your feet up for a few minutes. The fatigue I feel is the kind where I could fall asleep at a red light. I wake up with my eyes burning as if I never slept because even 9 or 10 hours of sleep isn't enough. It's a level of fatigue where I arrive at the gym feeling like I already worked out for over an hour even if I just woke up. It's hard to explain unless you have experienced it. I will admit, however, that I have also been doing way too much and trying to live my life like the "pre-cancer" Meghan did...and I guess I am realizing that I am just not ready for that yet.
Thankfully, Monday did end up being my last day of radiation. Yahoo! It is so nice to have this phase of my treatment behind me. Although I do love Karmanos and all the people there, it is really nice to not have to wake up each and every morning and drive there for treatment. Of course, I am still there a few times each week for other appointments, but the fact that radiation is now over is a huge relief and weight off my shoulders. I was a little fearful throughout all my weeks of treatment that my tissue expanders would rupture (a 20-30% chance), or that I would have a terrible skin reaction. Aside from what now looks like a pretty good sunburn, and of course the fatigue, I faired well through the entire process. I will continue to apply my topical steroid and Aquaphor on my skin three times each day and will have to wait and see how it heals. Dr. R (my radiation oncologist) informed me that the normal course of healing is that the skin will stay red for awhile, then turn darker and almost tan looking, until it finally peels off.
It worked out great that my last day of radiation was MLK Day and Mike had the day off. He came with me and snapped my picture as I got to finally ring the bell signaling the completion of radiation. All of the staff and patients clap, hug and celebrate you once you reach this milestone.
Instead of things calming down a bit once radiation ended, the exact opposite happened. I guess subconsciously I thought I could return to my old habits of running around like a mad woman, accomplishing a million things in a day. I succeeded at that for a couple of days but the reality of what my body is dealing with once again set in like a huge smack in the face. I doubt I will even get off the couch today.
Between Monday and Wednesday last week, I had 6 appointments to go to! I swear, you would think I have all this time on my hands since I am not working right now but managing my appointments and medical care is seriously like a full time job. But I also got to do fun stuff too like the weekly Monday take-out and reality tv show night with Katie, a lunch date with Elizabeth and her little Luca, and I spent the entire day on Thursday in Ann Arbor with Julie, Will, and sweet 6 day old baby Mae. Check out this cutie....
Last night we had a great family get together at my Aunt Erin's house with my brother, cousins and their spouses. It was so nice to spend time with members of my family that I don't get to see nearly enough. Before we knew it, it was after midnight and I was finding myself struggling to stay awake.
This week will include another few doctors appointments and my two monthly injections into my abdomen - fun times! ;) But most importantly, we have learned that Mike has to have a surgery of his own on Tuesday. It should be a very straightforward outpatient procedure to remove a cyst on his tailbone that he has had for a few years but has really started to become a problem. In true Mike fashion, my selfless husband has not really been honest with me about how much pain he has been in and how much this was bothering him, until recently. The surgeon said it will likely continue to get worse and that it needs to come out. Due to some travel plans and Mike's upcoming baseball season, he wanted to have the surgery ASAP. So it looks like we are going to have a little bit of a role reversal for awhile....Mike will get to be the patient and I get to play nurse. To be honest, I don't like it. I am so grateful that normally I am the one that's the patient because I would be such a nervous wreck if I had to watch Mike go through what I have been through these past few months. Even though this procedure should be smooth sailing, I am worried and don't want to see Mike in pain. The surgeon said that these wounds almost always get infected so rather than closing it up all the way, the site will be left open and I will have to pack it with gauze and keep it clean. Please keep us in your thoughts and prayers for a quick and easy procedure and complication free recovery. Although Mike is hoping to return to work after one week off, his surgeon said a full recovery should take 4-6 weeks, which means no running! If you know Mike and how many miles he runs every week, you know this will be a huge sacrifice for him. Say an extra prayer that he doesn't lose his mind, or drive me crazy with his restlessness. :)
ps - I forgot to mention that I did see my oncologist, Dr. F for my 6 week follow up since my last blog post. No huge news to report except that my scans are now scheduled for the end of February. I would appreciate all the prayers you can muster up that my scans continue to be as great as they were last time - progression free and healing taking place in my spine. Thank you! Thank you! Thank you!
My blog to keep you all