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!
My blog to keep you all