Wednesday, March 9, 2016
The truth about 5 years
I cannot wrap my around the fact that this month I will hit the five year mark of having been diagnosed with stage III breast cancer. FIVE years!
I still remember that day in March in 2011 like it was yesterday. I remember seeing a surgeon at 12:00 in the afternoon and being told whatever it was that I was feeling in my chest was nothing. He told me because the ultrasound tech did a bad job on the ultrasound, he was sending me back for a mammogram, just because. I had no family history, I was 31 and healthy. He just wanted to prove a point. After getting the mammogram a lady asked me to please return to Dr. P's office, there I sat in an exam room with my friend Stephanie (Ryan went back to work because we were told this was nothing). I asked Steph to grab the mammogram report off the door so I could see it. All I saw was "CATEGORY 5. HIGHLY SUSPICIOUS OF MALIGNANCY", that's all she wrote. I went numb. I heard him say the words "this is cancer", I just stared straight ahead and all I could manage to say was "Gabrielle and Cole. I cannot die". I remember staring at my phone and not having a single clue as how to use it. I eventually managed to text Ryan "I have cancer". That's all it said, he called me, I couldn't answer. I walked out of the surgeons office that day and into his waiting room where Ryan was coming through the door, I collapsed in his arms and just kept saying "Gabby and Cole, please don't let me die. Why is this happening". Everything from that moment on moved super quick, I went from finding out I had to cancer to starting chemo in a weeks time. God, I remember that first chemo treatment, the nerves, the tears, the uncertainty. Waking up the next day feeling like I was very hungover and feeling like I had the worst flu of my life. I remember the collapsed lung, the chest tube placement, the sleepless nights. I think I cried every night after the kids went to bed for a good year. I remember one day, about 3 chemo treatments in, asking Ryan to come in our bedroom. I asked him to sit on the bed with me and I lost it (more than the usual lost it) I told him I couldn't do this anymore. I was not strong enough, I couldn't take being this sick. I didn't want to have to fight to live. I didn't want to cry every single time I looked at my kids, I didn't understand why this was happening and I just wanted it over. All he did was tell me to think of how those words will affect Gabby and Cole. They were 3 and 4. They needed their Mommy, he needed me. After that day with Ryan, I got angry. Angry because he was right, I was not going to let someone else dance with Cole at his wedding, I was not going to let someone else help Gabby pick out her wedding dress. Anger is what got me through the rest of the treatments. I wasn't going to write a blog post about five years, partly because I am superstitious that since I haven't hit five years talking about it is bad luck. Partly because I thought I was over it. Well, if anyone read this blog, they may recall a post back in 2011 when my therapist (who was also a big reason I was able to continue and fight) he had me write "goodbye letters" to Ryan, Gabby, and Cole. Well, looking through my hope chest the other night, I found them. I wasn't going to open them, I was actually going to just throw them away. However, I did in fact read them.
I can't help but be stuck in my own head this month. I know the reality that five years is just a number, I know that cancer can return at any point. I know I will forever live with this mental game. I also know that for anyone who has heard those dreaded words "this is cancer". Whether it be you personally, a spouse, a child, a friend, a parent, a sibling, anyone close to you, five years is a significant achievement. It means the chances of it actually coming back are a lot lower, it means you made it to the mental finish line. I cannot wait for March 24, 2016 when I can say it's been officially 5 years. Until that time though, I am having a rough go around. I am worrying about little thing I feel, I am worrying about things out of my control again. Every March my anxiety spikes a tad, this March, my anxiety is off the charts! I know in my heart all is going to be fine, I just wish I could make my head believe the same things!
Sunday, November 8, 2015
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.
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.
Tuesday, August 11, 2015
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.
Sunday, May 31, 2015
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.
Monday, May 25, 2015
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.
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.
Wednesday, October 8, 2014
Losing someone is never easy.......
"Don't cry because its over, smile because it happened"- Dr Seuss.
It's funny the friends and relationships you form with other people who are in your boat. Since my diagnosis 3 years ago, I have made numerous friends through cancer. It has been one of the good things, meeting new people, creating new bonds and friendships with people who understand what your going through or went through. I have been fortunate to make several friends, a few have become very good friends. I never imagined I would have to say goodbye to one of them.
In one of my very first blog entries I wrote about a patient at the cancer center who I ran into in the chemo room. This was not just another patient (I don't mean that in any negative way), this patient was a favorite of mine. From the first day I met him, he was special, he was always happy, always positive. Even when he was feeling like crap from his chemo he always wanted to talk about my family, my life, he always told me "it is what it is" or "what am I gonna do, feel sorry for myself". He was the very first patient I told that I had cancer to, he was at the cancer center (by coincidence) the day of my first chemo. He saw me in the chemo room, stopped us and said "what the hell are you doing back here", when I told him he responded with "not you". He then put his arms around me gave me the biggest hug and said "you are going to beat this kid". He shook Ryan's hand and told him whatever we needed he was there for us. We ran into him a bunch of other times during my course of treatment and he always asked about me when he went in for his appointments. Once I returned to work, he would come in, ask for me, give me a hug and tell me how great I looked (even when I had no hair and knew I looked horrible, he always told me I looked great). He sat down with me once I was in remission and he told me how pissed off he was that it happened to me. I told him cancer doesn't discriminate and he wanted to hear nothing of that, he wanted to know what was being done to make sure I stayed in remission, what needed to be done to help my mental state of mind, whatever I needed he reassured me it was going to be alright. He became more than a patient, he was my buddy, he had a piece of my heart.
Earlier this year, his cancer came back. I was devastated when he came to my desk that day. He sat down looked at me and said "well sweetheart its back, it doesn't look good", I remember telling him "no, you are going to fight and you are going to beat this again, you have to". Every time he came in for treatment from that day on he always came to my desk, called me "sweetheart" or "kid" and never wanted to talk about himself. He only wanted to know that I was fine, that I was still in remission, that I was taking care of myself. He downplayed every aspect of what he was going through. He truly was a selfless man. I mean, he would always bring in cakes or breakfast, but what I always remember is the hug I got after each appointment. He would hug me so tight that some times I was certain he may pop an implant. He came in for an appointment last month, he came to my desk sat down and said "its over kid", I told him no, no it wasn't. I wasn't listening to him, I didn't want to hear that. I told him he still had fight in him and they were going to figure something out. He came in last week for another appointment, at that appointment, it wasn't him. It took everything I had to be strong while he was there, I wanted to cry, I wanted to wrap my arms around him and tell him I was sorry, tell him it wasn't fair. Not him! I couldn't make eye contact with his wife, she was trying to be strong for him. Today, he went to Heaven. Today, he was set free from pain. Today, the world lost an incredible man. Today, a piece of my heart broke.
Mr. Brooks, you will never fully know how much you mean to me. How much encouragement you gave me. I am glad you are free from suffering, I am glad you will finally get to rest. It will be hard to not see you, I will miss your hugs, I will miss your humor. I will hold onto the memories that I have of you.
It's funny the friends and relationships you form with other people who are in your boat. Since my diagnosis 3 years ago, I have made numerous friends through cancer. It has been one of the good things, meeting new people, creating new bonds and friendships with people who understand what your going through or went through. I have been fortunate to make several friends, a few have become very good friends. I never imagined I would have to say goodbye to one of them.
In one of my very first blog entries I wrote about a patient at the cancer center who I ran into in the chemo room. This was not just another patient (I don't mean that in any negative way), this patient was a favorite of mine. From the first day I met him, he was special, he was always happy, always positive. Even when he was feeling like crap from his chemo he always wanted to talk about my family, my life, he always told me "it is what it is" or "what am I gonna do, feel sorry for myself". He was the very first patient I told that I had cancer to, he was at the cancer center (by coincidence) the day of my first chemo. He saw me in the chemo room, stopped us and said "what the hell are you doing back here", when I told him he responded with "not you". He then put his arms around me gave me the biggest hug and said "you are going to beat this kid". He shook Ryan's hand and told him whatever we needed he was there for us. We ran into him a bunch of other times during my course of treatment and he always asked about me when he went in for his appointments. Once I returned to work, he would come in, ask for me, give me a hug and tell me how great I looked (even when I had no hair and knew I looked horrible, he always told me I looked great). He sat down with me once I was in remission and he told me how pissed off he was that it happened to me. I told him cancer doesn't discriminate and he wanted to hear nothing of that, he wanted to know what was being done to make sure I stayed in remission, what needed to be done to help my mental state of mind, whatever I needed he reassured me it was going to be alright. He became more than a patient, he was my buddy, he had a piece of my heart.
Earlier this year, his cancer came back. I was devastated when he came to my desk that day. He sat down looked at me and said "well sweetheart its back, it doesn't look good", I remember telling him "no, you are going to fight and you are going to beat this again, you have to". Every time he came in for treatment from that day on he always came to my desk, called me "sweetheart" or "kid" and never wanted to talk about himself. He only wanted to know that I was fine, that I was still in remission, that I was taking care of myself. He downplayed every aspect of what he was going through. He truly was a selfless man. I mean, he would always bring in cakes or breakfast, but what I always remember is the hug I got after each appointment. He would hug me so tight that some times I was certain he may pop an implant. He came in for an appointment last month, he came to my desk sat down and said "its over kid", I told him no, no it wasn't. I wasn't listening to him, I didn't want to hear that. I told him he still had fight in him and they were going to figure something out. He came in last week for another appointment, at that appointment, it wasn't him. It took everything I had to be strong while he was there, I wanted to cry, I wanted to wrap my arms around him and tell him I was sorry, tell him it wasn't fair. Not him! I couldn't make eye contact with his wife, she was trying to be strong for him. Today, he went to Heaven. Today, he was set free from pain. Today, the world lost an incredible man. Today, a piece of my heart broke.
Mr. Brooks, you will never fully know how much you mean to me. How much encouragement you gave me. I am glad you are free from suffering, I am glad you will finally get to rest. It will be hard to not see you, I will miss your hugs, I will miss your humor. I will hold onto the memories that I have of you.
Sunday, September 28, 2014
Sometimes I feel like I am falling apart
Ok, I know that I officially "ended my blog" in the beginning of the year, however, it was such a good therapist for me and I want to keep this entire journey in one place. So here goes my thoughts and emotions on being 3 years cancer free.
On September 16th I celebrated being in remission for 3 years. Yay (or so I thought yay). I have been looking forward to the 3 year mark since the day I was diagnosed. I remember being told, "the first 3 years are the most important", generally speaking my chances of a recurrence are the most high in those first 3 years. I told myself, make it to 3 years and the rest is going to be cake. I am pretty sure I set myself up for failure on that one. Don't get me wrong, I am beyond ecstatic to be cancer free 3 years later! I am starting to find it difficult again to not let the worry train come around and I am sick and tired of being on a pill that makes me not myself.
The worry train; I remember my world falling completely apart on that day in March 3 years ago. I have struggled with intense fear of dying, fear of facing chemotherapy and surgeries, fear of what my life becomes after all this. I was lucky to have a really good therapist and support system (outside my blog) who helped me face those fears one at a time. I conquered everything and made it to the other side. I remember dealing with the after effects of everything was actually harder than physically dealing with everything (if that makes sense). As of lately, I have found myself falling back into that space. I honestly think it is because I am letting life happen again and quite frankly, it scares the shit out of me. Three years ago I stopped allowing myself to look into the future, I didn't want to think about beyond the day I was in. I didn't want anything in my life to change, I felt safe in my secluded little bubble. Well, guess what? Life goes on, you can't live inside your own little bubble. We moved into a new house a couple months ago (a house we have plans for), Gabrielle is following her ambitions on an amazing competition dance team, Cole is busy playing baseball, I am finishing my degree. I have let myself think about and get excited about what is to come. I can't wait to see how our plans with the house pan out, I can't wait to see Gabrielle on the "big stage" (as she calls it) competing with an awesome team, I can't wait to get my degree in my hands and see where that takes me, to see how Cole continues to grow at baseball. The other day I got hit, a huge bag full of bricks right in the stomach hit, hit with fear that letting myself get excited and plan for the future again is wrong. I find myself so excited for what is to come that I am making myself scared, does that make sense? I am afraid that allowing myself to be happy for the future and make plans is going to backfire. I understand the future is a scary thought for anyone, I understand no one is guaranteed another day, I am honestly at peace with whatever the outcome of my life is. However, I do get scared at times still. Yesterday I found a weird, not a lump, more like a ridge in my implant that hurts. Of course I went, in my mind, instantly to the day I found out. I sat on my bed and bawled my eyes out, Ryan kept telling me it is nothing. So much was done to my chest that things like scar tissue or something else is going to pop up, that I have foreign objects in my body and at times I will feel weird things. I am sure it is just a muscle or the implant but it still scares me. It re-affirmed that everything can change in an instant.
Tamoxifen. Oh. How. I. Hate. Thee. This little white pill is the devil. I know it is serving me a great purpose and I will continue to take it until I am 42 (7 and a half more years). I don't know how I am going to get through those 7 and a half years. When I was first diagnosed, since my cancer was estrogen positive, I was told after chemo I could do Tamoxifen for 10 years or get my ovaries removed and do another pill option. Tamoxifen has the statistical information that makes me feel the safest. This little pill makes me feel like crap though. I have gained weight (like 30lbs), my emotions are all over the place, my moods are all over the place, I can't sleep at night, I get hot flashes, I bruise like I get beat up daily, my patience is very small, I am just sick and tired of taking it. I know things could be A LOT worse and I am very fortunate for the outcome I received, I just get angry (probably another side effect) that I don't feel like myself still.
A part of me feels guilty for even writing this blog and complaining all most about such minimal things. Like I said, this my therapist and for me, I can write my thoughts better than I speak them.
On September 16th I celebrated being in remission for 3 years. Yay (or so I thought yay). I have been looking forward to the 3 year mark since the day I was diagnosed. I remember being told, "the first 3 years are the most important", generally speaking my chances of a recurrence are the most high in those first 3 years. I told myself, make it to 3 years and the rest is going to be cake. I am pretty sure I set myself up for failure on that one. Don't get me wrong, I am beyond ecstatic to be cancer free 3 years later! I am starting to find it difficult again to not let the worry train come around and I am sick and tired of being on a pill that makes me not myself.
The worry train; I remember my world falling completely apart on that day in March 3 years ago. I have struggled with intense fear of dying, fear of facing chemotherapy and surgeries, fear of what my life becomes after all this. I was lucky to have a really good therapist and support system (outside my blog) who helped me face those fears one at a time. I conquered everything and made it to the other side. I remember dealing with the after effects of everything was actually harder than physically dealing with everything (if that makes sense). As of lately, I have found myself falling back into that space. I honestly think it is because I am letting life happen again and quite frankly, it scares the shit out of me. Three years ago I stopped allowing myself to look into the future, I didn't want to think about beyond the day I was in. I didn't want anything in my life to change, I felt safe in my secluded little bubble. Well, guess what? Life goes on, you can't live inside your own little bubble. We moved into a new house a couple months ago (a house we have plans for), Gabrielle is following her ambitions on an amazing competition dance team, Cole is busy playing baseball, I am finishing my degree. I have let myself think about and get excited about what is to come. I can't wait to see how our plans with the house pan out, I can't wait to see Gabrielle on the "big stage" (as she calls it) competing with an awesome team, I can't wait to get my degree in my hands and see where that takes me, to see how Cole continues to grow at baseball. The other day I got hit, a huge bag full of bricks right in the stomach hit, hit with fear that letting myself get excited and plan for the future again is wrong. I find myself so excited for what is to come that I am making myself scared, does that make sense? I am afraid that allowing myself to be happy for the future and make plans is going to backfire. I understand the future is a scary thought for anyone, I understand no one is guaranteed another day, I am honestly at peace with whatever the outcome of my life is. However, I do get scared at times still. Yesterday I found a weird, not a lump, more like a ridge in my implant that hurts. Of course I went, in my mind, instantly to the day I found out. I sat on my bed and bawled my eyes out, Ryan kept telling me it is nothing. So much was done to my chest that things like scar tissue or something else is going to pop up, that I have foreign objects in my body and at times I will feel weird things. I am sure it is just a muscle or the implant but it still scares me. It re-affirmed that everything can change in an instant.
Tamoxifen. Oh. How. I. Hate. Thee. This little white pill is the devil. I know it is serving me a great purpose and I will continue to take it until I am 42 (7 and a half more years). I don't know how I am going to get through those 7 and a half years. When I was first diagnosed, since my cancer was estrogen positive, I was told after chemo I could do Tamoxifen for 10 years or get my ovaries removed and do another pill option. Tamoxifen has the statistical information that makes me feel the safest. This little pill makes me feel like crap though. I have gained weight (like 30lbs), my emotions are all over the place, my moods are all over the place, I can't sleep at night, I get hot flashes, I bruise like I get beat up daily, my patience is very small, I am just sick and tired of taking it. I know things could be A LOT worse and I am very fortunate for the outcome I received, I just get angry (probably another side effect) that I don't feel like myself still.
A part of me feels guilty for even writing this blog and complaining all most about such minimal things. Like I said, this my therapist and for me, I can write my thoughts better than I speak them.
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