Cancer, Anxiety, Remission. There's a combination......

Anyone who knows me (or has read my blog) knows this blog is my catharsis. Whenever I am feeling anxious, sad, mad, scared, anything that relates back to my diagnosis, I open my computer, tune the world out and let the words and thoughts flow. This entry is no different. My posts have gotten very few and far between, which is good. I know I "ended" my blog last year, but for me, I cannot walk away from it. It's the one place I don't feel judged, the one place I feel like I can be as open and honest as possible, also it's a lot cheaper than sitting on a couch in an office pretending like I am letting everything out.

Any person who has ever heard the words "you have cancer" or have heard those words spoken to a loved one, understands what an emotional journey this is. A journey that, unfortunately, doesn't stop after the treatments stop. Don't get me wrong, I am beyond blessed and happy that in 4 months I hit the 5 year mark. I know the significance of that milestone in the medical world, I also know the reality, it's just a number. I secretly struggle just about everyday still with the anxiety of having been diagnosed at 31. Maybe it is because I was diagnosed with Stage III cancer and well there is only one more "stage" beyond that. Maybe it is because I am an anxious person to begin with and this certainly doesn't help an anxious mind heal. Maybe it is because I have worked in Oncology for 10 years and I feel a thousand different emotions and see every possible outcome on a daily basis. Maybe it is just the plain fact that once you have walked in these shoes, the fear never goes away.  Or quite possibly it is just because I have an appointment with my oncologist this week and I feel like my luck is running out. I think a person who is diagnosed with early stage cancer and a person who is diagnosed with locally advanced cancer handle anxiety differently (as it would be different for a person with metastatic cancer). I did read an interesting article (that sparked my thoughts on this subject) about how the anxiety of having had cancer increases as the years go on, instead of decreasing like your chances of recurrence do. I also get more anxious around my appointments, I am still seen every 3 months by either my surgeon or my oncologist, I try to not get worked up about these appointments, however I think in my mind I am waiting for that one appointment where I hear that word "recurrence". I fully understand how low my chances are of cancer returning at this point, but that doesn't really ease my mind. I guess, like I said earlier, I feel like at some point my luck is going to run out. All of these increased anxious thoughts and feelings could also be related to early menopause. Thanks chemo!!!

A lot of people have been asking me when my surgery date for the hysterectomy I decided on is. Turns out, after an appointment with my GYN over the summer and some additional soul searching, I decided against the surgery. Well,  apparently I may have made the right choice. I was informed having gotten chemotherapy at a young age puts you at an increased risk for going into menopause early (my body did go through a temporary menopause while I was receiving chemo. That was a fun summer). I have been experiencing quite a few symptoms that I just chalked up to Tamoxifen (it is a tricky little pill) or just my anxiety problem. However, after talking to my doc, turns out some blood work is needed as these symptoms are also indicators of early menopause. I mean hey, why not at this point. I have mixed feelings on this. I also was told Tamoxifen can put you in a menopause like state as well. So there's that too.

I have done some research (my absolute favorite thing) on cancer survivors who had the same diagnosis and treatments that I had, turns out an increased anxiety level a few months before that milestone 5 year mark is the norm. I can justify it in my mind, the day you get your cancer treatment plan in place nothing is looked at past 5 years (at least not 5 years ago, cancer treatments have changed, things may be different now. Tamoxifen is now 10 years instead of 5). I just had my binder of my medical records out the other day and read my first cancer patient office note. It stated if I had no treatment what so ever I had a 65% chance of NOT surviving 5 years. With the adjuvant chemotherapy, radiation, mastectomy and Tamoxifen route I took, I had a 75% chance of being alive and disease free at 5 years. 75% is wonderful and those are odds that I am more than happy to have, but that 25% still lingers in my head. Especially when 5 years is in 4 months. I get no one is promised tomorrow, I think I just struggle with the statistics. In my research, I also read that even though the fear or uncertainty will not fully go away, once you get past the milestone year, the anxiety level starts going down. I really hope there is truth to that, not sure I am going to make it to March with this level of anxiety.

Nana

"Love is the greatest gift that one generation can leave to another"-Richard Garnett

  Anyone who knows me, knows I am not really good at speaking my feelings. I am better at writing down what is in my mind. I find it easier to express emotions through writing.

  On Saturday my husbands family lost their matriarch. Ryan lost his Nana, my mother-in-law, Pam, lost her mom. Gabby and Cole lost their great grandmother and I lost a woman who showed me so much in the 16 years I knew her. Nana was a strong, caring, compassionate, loving, stubborn, and big hearted person. From the very first time I met her, she was Nana. Not Mrs. Ridall, not Ms. Evelyn, but Nana. She welcomed me into her family with open arms, she always made me feel comfortable, she always made me feel as though I was her grandchild my entire life. She had a special quality about her. No matter what she had going on in her life she always made time for you. One thing that always stood out to me was how much she loved her grandchildren and in return, how much her grandchildren loved her. 

 When I received the phone call on Saturday that Nana wasn't doing well, my heart broke. My heart broke because Ryan was 2 hours away at a baseball game he couldn't leave, Pam and DR were 6 hours away trying to get home as quickly as possible. I headed to the hospital (with my sister, because I called her frantic) to sit with Nana. I was not prepared for what I walked into. As I walked into the room and saw Nana it took every single ounce of everything I had in me to keep it together. I stood there for a few minutes looking at her and trying to figure out what the right things to say were or what the right thing to do was. 

 As difficult as it was seeing her like that, I am so very thankful and honored to have gotten to spend the last few hours of her life with her. She asked to hold my hand at one point and I sat on the hospital floor (yes, germ-a-phobic me sat on the hospital floor) and held her hand and rubbed her head while she replayed memories of her life in her mind. She wasn't able to really speak, so instead I just reassured her that everything was going to be ok, that her family loved her so very much. I thanked her for showing me what unconditional love looked like, for raising a fantastic daughter who was an equally as wonderful Grammy. I thanked her for having a hand in raising Ryan and I told her he was the most incredible person I knew. But most importantly for me, I told Nana how much I loved her (again, I am not good at expressing my feelings). I sat on that floor holding her hand and rubbing her head for 2 hours. That is 2 hours of my life that I will forever cherish. 

 When we lose someone we love, we have to find the beauty in the situation. Watching someone take their last breath is not easy, being there the moment they slip away is haunting. However, just like I have always done in my life, I turned to my sister. She told me to think of that last breath as a milestone. Nana took her first breath in hospital room surrounded by people who loved her deeply, she lived an incredible 82 years, and then took her final breath in a hospital room surrounded by those who loved her deeply. Her life came full circle. Her memory, her amazing qualities, her values, and her will forever live on in her children, her grandchildren, her great grandchildren, and anyone who was lucky enough to have her in their life.

"Don't cry because it's over, smile because it happened "-Dr. Seuss

Rest in Peace Nana, I love you.

I have made my decision.....

"Sometimes the questions are complicated and the answers are simple"-Dr. Seuss

Oh, how powerful our brains are! One of my biggest flaws has been (and unfortunately always will be) my need to over think every situation. It's human nature and it's in all of us to make things much more complicated than need be. I have struggled and obsessed over the question of ovarian suppression vs Tamoxifen. What is right for me? What do the books say is the best option? What would? What if? How come? How long? I have thought so much that I wore myself out.

I have talked to friends and family, I have created a folder (anyone who knows me, knows my love of calendars and folders. If I can create a folder on something, I am all about it). I have printed out just about every single article I could find on the benefits of ovarian suppression in ER positive breast cancers, on menopause at 35, on hysterectomies, on oophorectomies (removing just the ovaries), on the recovery, on the surgery. I have read and re-read every line. I have highlighted statistical facts, I have highlighted opinions, I have highlighted information solely because it looked important. I have been consumed with this for over a week. I had a mini break down the other night over this. I am pretty sure I just mentally wore myself out. 

The other night as I was driving home from work, I was thinking about how I make this choice. I started crying in my car and when I got home I held it together during dinner, then I went into our bedroom and I lost it. Ryan came in and asked me what was going on. I broke down and told him everything. Every fear, every reason I did not want to get my ovaries out, every reason I did want to get my ovaries, how I know I am making this bigger than need be, how I wish I was never told about this new option, how I NEEDED him to tell me what the right thing to do was. Ryan just simply said "do what's in your heart Amy".  I felt like saying well, if I knew that I wouldn't be sitting her crying! However, when he said that, something inside me told me, my answer wasn't in research papers, it wasn't in Google's search engine, it wasn't in any of the places I was looking. To some this might be a no brainer, to some this might seem like I am making a mountain out of a molehill. It's just my head, my heart, and my gut are telling me different things. My head says stay on Tamoxifen. My gut says do the surgery. My heart, felt torn between the both. 

I decided I needed to find some clarity. I needed something to help me make the choice that was right for Amy. As I sat and thought about where do I find this? Do I pray (well, honestly I am not religious)? Do I listen to the advice I have gotten from friends and family (after all they do care about me)?  Where does clarity come from? Then sitting on the couch staring at my computer screen, I decided to re-read my blog. Now, I have only re-read this blog one time and honestly after I was done, I felt sad. I logged in and started at the first entry, March 24, 2011. By the time I had gotten to round 3 of chemo, I knew my answer. I think I always have, I just needed to be reminded. Having gone through everything I have, I mentally blocked out all the bad, all the feelings of sadness, all the feelings of fear. By this I mean from a chemo point of view. I still and will always have feelings of sadness and fear related to cancer, but re-reading the beginning of the blog, when things were still new and my feelings were still all over the place, I instantly in my gut felt like it was happening all over again. I remembered very vividly all those feelings and fears. Then I found the post, the blog post where I sat in my oncologists office in the very beginning of chemo and asked if I could have my ovaries removed. After learning my cancer was 65% estrogen positive and estrogen was made in my ovaries, I wanted them gone too. At that point I was told there was no statistical evidence that removing your ovaries was any better than taking Tamoxifen. Well, look now, there IS evidence that this option can be more beneficial. All I needed was to remember that I told myself from the start, I didn't care how drastic or aggressive it was, I wanted to do every single thing that would make my recurrence rate the lowest. 

So, surgery it is. I can handle menopause at 35, I am kind of thinking it will be nice to go through it young and get it out of the way. I already have hot flashes, I know what it is like to go from a comfortable body temp to pins and needles and feeling like a fire is rising from your chest up. I am already moody from Tamoxifen (I hope it cannot get any worse, there are plenty of days I cannot stand myself). I am already over weight from Tamoxifen and poor lifestyle choices I have made since this all started. I can handle this. I am strong, I am stubborn, I am resilient. I have asked how soon this needs to be done, since it's not emergent (I am 4 years out from chemo in July) but should be done sooner rather than later, I have decided this fall is a great time to go under the ol' knife again. I would like to work hard and drop at least 10lbs (I read, shocking right, that if you go into menopause over weight the side effects are worse). 

I feel good about this choice. I know it's the right one for me. I will meet with my Gyn in the next few weeks and discuss which surgery he thinks is best, total hysterectomy or an oophorectomy. And then I will pick my date. Four years ago, I told myself being a victim to cancer was not an option. I was lucky enough to be diagnosed before it had spread, I was lucky enough to be get chemo and surgery and to be put into remission. I was and still am willing to be as aggressive as possible to make sure I stay in remission. I have 2 amazing children who are becoming their own and who continue to amaze me everyday with everything they do. I am not willing to possibly jeopardize not being there for every game, every dance competition, every argument they have. I am not willing to not be around to continue to annoy the crap out of Ryan ;) We have been married for only 12 years this year, he has a lot more of me to deal with!

So, like I said in the beginning of this post, "sometimes the questions are complicated and the answers are simple"- Dr. Seuss. 

Decisions, decisions, decisions

So when I started this blog in 2011, it was a place for me to write down my fears, get out my frustrations, to help me deal with everything I was facing and to chronicle every step of the "cancer journey'". I stopped writing on here last year because, well life was good. No need to chronicle the every day activities of a normal Mom to two little ones. Well, the other day I had an appointment with my oncologist, still good 3 and a half years in remission, but I do have another decision to make. The last major medical decision I had to make was saline vs silicone vs gel implants. I hate when I feel confused and unsure of what to do. I hate when my mind is at a crossroads and I have absolutely no clue which "road to take".

There continue to be amazing advances in medicine, especially with cancer and how to treat the disease. There constantly are studies being done on the treatment of breast cancer. The newest one to come to light (or at least be brought to my attention, because I fall in the criteria) is to put young women in menopause who have/had ER positive breast cancer. Now, let me recap, it has been awhile since I have written on here, I was diagnosed at the age of 31 with stage III locally advanced estrogen positive, HER2 positive, infiltrating ductal breast cancer. I have undergone 6 rounds of chemotherapy, radiation to the right side of my chest, a bilateral mastectomy with reconstruction and now I take a pill everyday for 10 years. I was (and still am) comfortable with this treatment option. However, like I said, medical advances are made everyday. The new "thing" to do, is women who were under 35 at age of diagnosis, whose cancer was aggressive enough to require chemotherapy and who are premenopausal after chemotherapy would be to shut their ovaries down and put them on an aromatase inhibitor. Now, I stated I take a pill everyday for 10 years. I take a pill called Tamoxifen. Its an evil little pill! Since my cancer was estrogen positive (meaning it needs estrogen to grow) the goal would be to block the production of estrogen in my body. Tamoxifen, as I have been explained to, acts like a bonding agent and blocks estrogen. I was told to visualize the cells in my body being little key holes and estrogen being the key to fit all the holes. Tamoxifen goes in and blocks the keyholes so the keys (estrogen) cannot fit and cause problems. I have been on this pill for 3.5 years, I have experienced and lived through the worst of the side effects, so far anyway. I have gained roughly 25 pounds, I have hot flashes, I am moody, etc.. Nothing that is too much to handle, the way I look at it, I can handle all those pesky things if it means keeping cancer at bay. There is also effects of being on this medicine for a lengthy time, the increased risk of uterine or endometrial cancer, blood clots, stroke, however the chances of those incidents occurring are small (I think). Well, now that this new ovarian suppression and switching to a new pill has come to light, I don't know what the right choice for me is.

If I decide to go with ovarian suppression, I am not willing to get a shot every three months to put me into menopause (I don't like taking medicine, I tolerate Tamoxifen because I have no choice). The route for me would be to have my ovaries removed, since I won't need the other parts, I would actually end up getting a total hysterectomy. Another major surgery. I would also be thrown directly into menopause the moment I wake up from surgery. So, instead of my body naturally and gradually going into menopause (like most women) I was told it would like hitting a brick wall at 60mph. I would have all the effects of menopause, and  I would have to start all over on a new pill for 5 years. Doesn't sound bad, right? Until the kicker, the potential side effects of "throwing" me into menopause would be osteoporosis, heart disease, bone pain, diminished quality of life. Joy! I understand women get hysterectomies all the time and they do fine, but they get hysterectomies because of gynecological reasons, so the hysterectomy is beneficial to them and potentially help their quality of life. I however, do not need one for any reason other then to shut my ovaries down and shock the hell out of body again (it can't really be worse than chemo, right). I also understand these are just "potential" side effects, but the thing with me is, I read every warning label, I research everything, I am that person that NEEDS to know what could happen. Even if 1 person out of ten thousand had a simple side effect/reaction I want to know. I like to be prepared for everything, no surprises.

While the study does show a decreased chance of cancer recurrence after ovarian suppression, it doesn't show an overall survival advantage. Basically, the chances of cancer coming back drop (not significantly but it does drop) and the chances of dying from heart disease or some other complication increase (at least that's how I am understanding it). Unfortunately, tamoxifen used to only be taken for 5 years, a new study proved that extending that to 10 decreased cancer recurrence rates. Since the 10 year Tamoxifen trial and this new SOFT trial are fairly new, there is no statistical evidence stating which one is more beneficial. See why I am confused?

I am the type of person who needs black or white, right choice or wrong choice. I am an over thinker, over analyzer, I have been researching this new information, I have made a pros and cons list, I have been consumed with "what if". I felt the most confident when my doctors told me, you WILL get chemo, you WILL get a mastectomy, you WILL get radiation, you WILL take this pill. Being told, this is your call, I can't seem to figure out what the right answer for me is. This isn't a simple question in my mind. Do I stay the course I have been on for 3.5 years (if it isn't broke why fix it) or do I switch to the new standard of care option (advances in medicine are made for a reason). The hardest thing for me is the unknown (which has and will continue to be the hardest part of this journey). My doctor did ask what my goals were, that is simple, to see Gabrielle and Cole grow up, to not ever have to go through that "journey"again, to grow old with Ryan, the same goal every wife/mother has. I was told, if my goal is to continue to be as aggressive as possible (I made that choice the day I was diagnosed) then surgery and switching pills is the best choice from a cancer stand point. Not the best choice from a now healthy 35 year old stand point though. I did tell myself and my doctors from day 1, that I wanted to do and take whatever was going to make my recurrence rate the lowest it could be, but at the same time, I don't want to decrease my quality of life, I don't want to feel like a 70 year old stuck in a 35 year olds body. Don't get me wrong, every day that goes by that cancer does not recur, my chances of it recurring drop. Each year that I go without recurring, I feel more and more confident this is never coming back. If I am 4 years out and doing fine, do I really want to "alter" myself yet again? I am not a big fan of change, I do best in situations where I can plan my life, where I can plan and be prepared for outcomes ( I am so "Type A" it scares me) I don't like the "well......." feeling.

I had such high hopes that when I got the port removed in April 2012, the big steps would be behind me. In the end I am confident I will do what is right for ME. I am confident I will make the decision that is best for my family. I just need to figure out what the hell that decision is and how I make it.