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,
It's often quite overwhelming and daunting to think about how much can go on in the span of a couple weeks....how many emotions I go through...how many highs and lows there are...and how my the status of my health can change.
The past few weeks have been nothing short of exhausting and overwhelming. There are times when I want to share with you all what has been going on but I don't even know where to start, and it makes me feel exhausted just thinking about trying to catch everyone up to speed. I apologize for that because I know you are all waiting for updates and want to know how things are going. Prior to my last post about the loss of my uncle, I was prepared to tell you about my trip to Vegas for my friend Nikki's wedding. It was great to see my old college roomies and have a few days of R & R - although I actually got a little extra time than I bargained for since I accidentally booked my flight home on the wrong day. :) So, I got a little extra fun in the sun and enjoyed not only the warm desert air and sunshine, but laughs with friends, good food, a great Cirque du Soleil show and even won a few bucks! I am grateful for feeling well enough to travel and spend time with friends!
After I got home from Las Vegas, it was back to full blown busy mode with 2 or 3 photo sessions each week, an amazing acoustic Ben Harper concert in Ann Arbor with Mike, doctors appointments & my monthly injections, support group meetings, and a fun fall baking day with girlfriends.
The past week or two so has been an especially difficult one for me. Of course, it all stems from the loss of my Uncle Kevin and all of the emotions that brings. Then last Wednesday, Mike and I were invited to an impromptu small dinner with Ambassador Nancy Brinker - the founder and CEO of the Susan G. Komen for the Cure organization. My local Komen affiliate has been wonderful about listening to my concerns regarding how isolated the metastatic breast cancer community often feels in the midst of all the Komen events and fundraisers. I will write a more in depth post on this another time but the meeting was my opportunity to voice my concerns and opinions to Ambassador Brinker herself - and that's exactly what I did. I would say that dinner went well but it was the start of another emotional few days for me involving a lot of talk about cancer, cancer, cancer.
The following day, Mike and I left straight from work to be with my family in Grand Rapids as we prepared to lay my Uncle Kevin to rest. Thursday night and Friday were spent remembering what an amazing guy he was and what a great impact he had on so many people. As I said before, these things are even more difficult for me now that I am living with this disease. It makes me wonder - what songs will be at my service? Who will speak? Is this how my family will be talking about me? I am thankful that Mike lets me be free to talk about whatever I need to, at any time. So, as we left Grand Rapids and drove to Chicago, we talked a little bit about my funeral. No, I am not dying - and I don't plan on heading that way for a very long time. But the reality of this disease forces us to discuss these things sometimes. And contrary to what you may think, it actually makes me feel better to talk about it. It doesn't help when someone says, "don't talk about that" or "that's not going to happen". Let us talk about it because the thoughts go on in our minds anyways and if we are free to discuss it, it lifts some of that weight off of our shoulders. ("Our", as in those of us living with metastatic breast cancer and other incurable diseases.)
We arrived to Chicago on Friday night and I was looking forward to just relaxing with our good friends Beth & Ben - and that's just what we did. We were not only in Chicago to visit our friends, but we went so that I could attend the Metastatic Breast Cancer Network's Annual Conference. Although, it was great to meet up with some of my friends living with MBC, the conference was difficult for me emotionally. I think I will talk about it more in my next post, but let's just say I was hoping to feel encouraged, uplifted and empowered and instead, I left feeling emotionally exhausted, frustrated and very sad.
First thing on Monday morning, I found myself back in my plastic surgeon's office. Haven't had the chance to tell you guys, but the swelling in my left breast returned a few weeks ago. I know Dr. M told me that if the swelling ever came back, surgery was inevitable. Well, after discussing the issue once again, asking more questions, and shedding a few tears - I left my appointment with surgery on the books, as well as a decreased sense of confidence that this will be the last of these problems. Of course, I trust Dr. M very much, but there is just no telling what will happen after he opens me back up. He will be removing the mesh tissue that we think is causing all of the problems. He will also remove the implant and replace it with a new one. Not only am I worried about the usual side effects from surgery - infection, pain, and the fatigue that it brings over me - but I am worried about what will happen once that mesh is removed. I obviously needed that mesh the first time around because my skin wasn't strong enough to support the implant on it's own. I am now praying that somehow I will be able to successfully support the implant without the mesh, because if I cannot, it means more complications and more surgeries down the road.
I know that this is nothing major in the scheme of things and that things could be WAY worse. I get that -believe me, I do. But, for the first time last week, I finally hit a point where I just didn't want to try to find the silver lining. I didn't want to have a pity party, but I just wanted to be able to feel sad and discouraged and know that it was justified to feel that way for a little bit. I began to question many of my decisions. Did I do the right thing by having the left breast removed? Should I have just dealt with the mastectomy and foregone the reconstruction? Am I causing my body more harm than good in the long run by going through all of these surgeries and procedures? Once I let myself ask these questions, express these emotions, and work through my feelings, I felt better and could get on with my day.
So, surgery is now scheduled for November 20th - if I told you a later date, that's because there was an earlier opening so they are getting me in a little sooner. Please pray that everything goes very well and that my body can sustain this reconstruction without the mesh, and without further surgeries and complications.
Thanks for your constant love and prayers.
This week has been filled with all sorts of up's and down's which has led to this post being delayed a bit. It seemed like every time I would sit down to write, I would feel a certain way and when I would come back to finish it later, I would be feeling a completely new set of emotions and delete everything I had previously typed. So, where to start?...
We had a wonderful Thanksgiving, followed by a great weekend in Chicago to celebrate our friend Mike's wedding. We had a really fun weekend and it was nice to catch up with some old friends that we don't get a chance to see too often.
On Monday, I headed back to see Dr. M (my plastic surgeon) and after one more fill of my tissue expanders, he gave me the okay that we could be done with this step so I could move on to radiation. So, come Wednesday morning I was back at Karmanos for a couple hours getting all geared up to start this next leg of the journey.
I met with Dr. R (my radiation oncologist) for awhile to talk about how I have been doing post-surgery, and to go over all the potential risks and side effects of radiation. Oh you know, just the unavoidable scarring down of up to 1/3 of my right lung, potential demineralization of my ribs putting me at risk of fractures, possible rupture of my tissue expander, lymphedema, fatigue, and burning/scarring of my skin...just to name a few. No biggie, just another day in the life of a cancer patient...being constantly faced with choices that bring uncertain and potentially dangerous outcomes no matter which way you go. Radiation brings many risks, but I feel that lingering cancer cells pose an even greater risk...therefore, the choice is to let the radiation begin! I will have radiation treatments every single day (Monday through Friday) starting this Monday, all the way through the end of January. However, we have decided to hold off on radiating my spine at this point. This is a much more dangerous area of the body to radiate, and a place that we don't want to radiate unless we really have to. Right now, I am not really having symptoms of back pain due to my cancer. I have an achy and sore back most days, but it is more due to deconditioning and fatigue, rather than the metastases. So, for now we will wait and see how I feel and if the time comes when pain becomes a bigger issue, maybe we will radiate.
After meeting with Dr. R, I headed in for my CT simulation. This is when my radiation therapist and Dr. R used a CT machine to determine the exact location and size of the area to be treated. After a bunch of different marks and assessments, I received 4 permanent little blue tattoos to mark where the radiation beam would be directed at each of my treatments. My right chest wall will be the area radiated, so I now have one small tattoo under my right collarbone, one over my sternum, one near my waist on my left side and the last one near my waist on the right side. After this procedure was over, I received my usual monthly injection of Zoladex (the one that suppresses my ovary function), and also received my first injection of Xgeva, which is a bone strengthener that I will be getting every month from now on. Needless to say, when I left Karmanos on Wednesday afternoon, I truly felt like a human pin cushion.
Last Wednesday night, Dr. R called me which made me a little nervous to say the least. Luckily, all she wanted to tell me was that I needed to have some of the saline removed from my left breast so that it wouldn't interfere with the angle of the radiation beam. I knew that some of the fluid may need to be removed but I was completely shocked after leaving Dr. M's office on Thursday afternoon when they removed nearly half of the saline from my tissue expander. I had a "little" meltdown in my car while driving home - for the first time, I truly felt so sad about how I looked. I worked so hard to tolerate the quick expansion of my expanders and I felt that all of the discomfort I went through was for nothing. Now I am left with this stretched out skin and a deflated looking breast and it was just an emotional moment for me. I didn't realize how different it would look after having 150 cc's removed and for whatever reason, I just lost it. I rarely complain about all of the things my body has had to go through - how I have been poked, prodded, cut up and stretched. I know that it is not the biggest deal in the great scheme of things. But the simple fact is that sometimes it's just a lot to take. I know my dissatisfaction with the way I now look will only be temporary but sometimes I just need to let myself be upset and then I can move on and get over it.
Thankfully, immediately after pulling myself together from that appointment, I left to pick up my wonderful friend Meredith and we headed to our support group meeting. I always feel better after going to those meetings and it was just what I needed that day. We had five new people attend this time and I am grateful for the love and support each person brings to the group.
Friday I visited many of my old co-workers at the Rehab Institute of Michigan and it totally made my day to see them. I am grateful for the time I spent working there and the friendships I made because many of these women continue to be my biggest supporters as I go through this battle.
The real part of this week that has weighed heavily on my heart is hearing the news that a special friend of mine is not doing too well. This is a friend I have met along this journey, who is also battling cancer. We have so many crazy connections and similarities (not to mention we were born on the same day!), and she was diagnosed with advanced cancer just about a month after me. I have spent much of this week worrying about her, praying for her, and trying to remain positive about my own health while being faced with the devastating reality of what this disease can do to a vibrant, beautiful 29 year old woman like her. If you could please say some extra prayers for my friend and her family. Prayers for healing, decreased pain, strength, and peace as she bravely continues this fight. I would really appreciate it.
This upcoming week will be another busy one filled with daily radiation appointments, the start of therapy for my chest muscles and shoulders, holiday shopping, and a few special events in the evenings too. Please keep me in your prayers, because I know they are helping me each and every day. Although I make sure to enjoy each day and I am very optimistic about my future, it doesn't mean that there aren't daily struggles and it is your love, support and prayers that help me through those times.
Loved spending time with some of my favorite ladies the night before Thanksgiving
All dolled up with my handsome husband at Mike and Noreen's wedding! ....ps-can you tell the hair is starting to take on a life of it's own?!
My beautiful friend Julie and her husband Joe were at the wedding too - so glad we were able to spend some time in Chicago together. Love you, Poo!
My blog to keep you all