Hi Friends!
July 5th was my last post and it’s been so long I don’t even know where to start or how to explain why I haven’t been posting, but I’ll give it a go.
Life has been full and busy with family and lake trips with friends and that all is so great and it makes me so happy. This picure was at a campsite with a beach area just a couple of weeks ago at sunset. Isn’t it just gorgeous? Happy place for certain!
However, my body and brain feel like sludge, so that part’s not so great and it feels like the “not so great” parts of life are consuming me physically and mentally. I lost all interest in blogging as I was really struggling to push the negative things happening to the back of my brain and pull the positive, fun and happy things forward to share. Some days, many days, I feel like I am operating on autopilot. My days seem filled with doctor visits and complaints, (Complaints from me. I’m the one doing the complaining) and who wants to read about that? Nobody I know. So I just stopped sharing.
But…..today is August 31st. It’s an important day for me as this is the 4th Anniversary of my double mastectomy. Some days that feels like forever ago, and some days this body of mine still feels so different and unrecognizable as if it all happened yesterday.
Because I found my lump that sent me to the doctor in the first place, I promised myself that I would always share my story and remind family and friends each month to do a self breast exam as a part of their self care. It feels like my duty. One thing I can do to help. So coming here today is important and being here, writing, is a good place for me to be.
I hope that in continuing to share my story that I can bring some comfort to others diagnosed with breast cancer, even if it just helps them feel a little less scared. I hope to help family and friends have a better understanding of what it is someone with a breast cancer diagnosis may be going through, even though all of our stories can be so very different.
Now, check those boobs. Look for any lumps, dimples, changes in color, discharge. Feel for any changes. The more frequently you do this, the more familiar you will become with your own body and if something ever does change, you will recognize it. Then, call your doctor and advocate for yourself.
I won’t go into all of my current doctor visits, but I will say this. ALWAYS be your own advocate! Ask questions. It’s YOUR body. Get a second opinion if that is an option for you. I decided to get a second opinion from a rheumatologist as every joint in my body is hurting. This particular doctor is telling me something completely different that the first rheumatologist. This doctor is doing quite a bit more lab work and asking me a lot more questions than the previous doctor. I feel more heard. He tells me that I do NOT have an auto immune disease. Anyhow, more testing and appointments over the next few weeks with hopefully some answers. Advocate for yourself.
I’m on year three of Tamoxifen (an estrogen blocker prescribed to breast cancer patients with estrogen positive breast cancer), which my body has hated from the beginning. The oncologist tells me that what I’m experiencing physically has nothing to do with Tamoxifen. Both of the rheumatologist that I have seen tell me they have several patients on Tamoxifen experiencing the same things and that they DO feel the Tamoxifen could be playing a role in what I am feeling happening inside my body. I have two more years to take it. Some days that sounds like an eternity, but I know it’s important as it reduces the risk of reoccurrence, so I have to keep reminding myself of that. I guess my biggest concern is…..will I feel better when I no longer take it, or will I feel like this forever? I think that’s what has gotten to me lately. While I know without a doubt that a positive attitude can make all the difference in the world when going through a difficult time, pretending like you feel fine when you don’t takes a lot of mental and physical energy. I’m tired.
And menopause. Ugh. I had my complete hysterectomy in March of 2018. My only changes post hysterectomy seemed to be hot flashes, (like, I have them all the time) which is also one of the most common side effects of Tamoxifen, so I’m just going to have hot flashes and I’ve adapted to those. My mood was fairly level for the longest time. If anything, I was less emotional. Maybe even a little numb. Now? I’m easily irritated and short. I cry all the time. Like deep cry. Not just a few tears but a cry from the gut and I have no idea why. While I’m crying I don’t know what I’m crying about. I feel overwhelmed with all of these unexplained emotions. Sad. Happy. And any in between. I also have intense brain fog recently. Like, what the heck is happening there? I can’t complete a sentence frequently, so I just stop talking mid sentence. It that menopause? I have no idea but it’s a daily occurrence.
I finally went for a sleep study and I have mild sleep apnea. They suggested a dental appliance as a first option before doing the CPAP mask. I liked that idea so I went for a consultation. The dental appliance was $2,100 out of pocket!!! I said “no thank you”. Now I suppose I need to look into the mask. I am not sleeping well most nights, which probably isn’t helping with the emotions that are all over the place.
How have I been dealing with things? Not great. While I have stayed active (I did decide that HotWorx wasn’t for me, but I’ve fallen back in love with Yoga with Adrienne on YouTube!) with walks and yoga and practiced so many other healthy behaviors, a good month of feeding my feelings has me at a place on the scale that I hate. I mean, really hate.
I don’t feel like a good role model right now for my members. It’s hard to stand up in front of a group of people and feel on your insides like you are failing them. I feel so passionate about my job and about helping other people reach their goals and discover what changes they can make in their own life that will help them reach their goals, but I feel like I’m not succeeding right now at doing those things with them. I’m disappointed in myself to say the least and that’s a hard thing to say here to you, my readers.
After the thumb fiasco from September of 2020 to March of 2021, I felt my energy level drop. I could feel my positivity fading. I felt like I was making so many good decisions in how I was living my life and taking care of my body over the last 10+ years, but it’s like my body doesn’t appreciate those since the cancer. My body doesn’t seem to be cooperating with me. The unexpected meniscus tear and knee surgery. The unexpected wrist surgery. The thumb. All of the joint pain I’m now experiencing. Is this all Tamoxifen related? Is it related to menopause? Is it part of being 54? I’m not sure. I just know that something needs to change and I’m feeling a little lost right now as to what I can do in order to feel better.
So there’s an update. I much prefer sharing funny stories, camping trip tales and new food finds, but today you get this. This part of life that just isn’t any fun but also a part of life that happens. I am extremely grateful to be cancer free and I remind myself of that daily.
Thanks for being here and reading.
I hope you all are having a fantastic summer and enjoying some fun activities, adventurous trips and making wonderful memories!
Several of you reached out asking where I was and you have no idea how much I appreciate that! Thank you! You’re all just the best.
I’ve missed this little corner of my world.
Until next time.
“love the life you live, live the life you love”
Lois, Thank you for the reminder to celebrate each day. I feel like for the most part I’m pretty good at that but I know recently I haven’t been as mindful about doing that. Thank you so much for your sweet comment. I appreciate your words and I appreciate you taking the time to send them to me. I hope you get to enjoy some sunshine on your face today.😊
Renee,
Thank you for reminding me to talk to myself like I would my best friend. We say that so much in the WW workshops and sometimes (often I suppose) I forget to do that myself. Your comment was very sweet and it sounds as though you’ve really been through a lot and you seem to have adapted a great attitude about accepting it and making the best of each day. Thank you so much for your kind words and prayers. Sending them right back at ya! Also thanks for the comment about menopause brain fog. I keep thinking I’m going crazy!!
Wilma, Thank you for sharing your experience on tamoxifen. I know I’m not alone. So happy to hear you are on the other side of things. I will get there too. I need to work on my patience. I’m certain that if I didn’t stick with WW as a lifestyle I could be much more uncomfortable. Thanks so much for reading and taking the time to comment.
Nancy, I absolutely loved reading your comment! You took me back to a day where full of frustrations and I ended up finding the good in it. I remember being so frustrated but looking at the beautiful place I found myself lost in and enjoying it. Thanks for such a great reminder and thanks for taking the time to comment. I appreciate you!
Thank you Denise. Miss you lots! Hope life is going well for you.😘
Hi Trisha, Menopause truly is awful, and I keep telling myself, this too shall pass. I mean, eventually. Right?? Thank you so much for your comment! I will get back to Blogging more often.
When January 2021 arrived, I thought that this year had to be better than last year, what with Covid and all. Wrong. My torn meniscus in May and breast cancer diagnosis (stage 1) in July changed my plans. Not responsible for either event, but responsible for moving ahead, somehow. You have overcome so much more than I can ever imagine that you deserve a ticker tape parade. I call cancer treatment slice, dice and poison, and Tamoxifen is definitely a poison, as all chemo is, so it is not surprising that you are having some negative side effects, including brain chemistry issues. My prayer for you is that your doctors will find the right treatments for you, so you can get back to enjoying life instead of enduring it. CPAP therapy is more effective than a dental appliance, and while you may have to trial a couple of masks to find one that you can work with, you will feel more refreshed in the morning, which does make the rest of the day easier to get through. My sleep apnea is mild, too, and I use the ResMed AirFit P10 nasal pillows system, with a chin strap that I found on Amazon, since the one that came with the system kept sliding off my head. If you’re a mouth breather, you will need a chin strap. Best wishes for a better rest of the year. Thanks for posting the good, the bad and the ugly; you’re living an authentic life, just like the rest of us, and inspiring me to keep the faith that this, too, shall pass.
Have missed you! Thinking of you.
I’ve so missed your posts and pictures! Glad your doing as well as you can. I’ve dropped WW because there are no evening meetings and I’m struggling big time without them…menopause is kicking my butt too💗
Oh my! You have no idea how much you have been such a positive role model for me. I know life is a journey with some smooth paths and a few rough spots. I took tamoxifen for 9 years, before I decided that was enough. After 5 they said take another 5. Finally it was causing my uterus to grow to the size of a cantaloupe. Then I had the hysterectomy. I lost track and finally this year with the help of my sister and all of the past encouragement from you, I am finally (slowly) getting my act back together. Stay strong and grateful for the little things and you will survive your 50’s. May all good things come your way. You so deserve them. Please keep posting. I really miss reading your blog.
I am also a breast cancer survivor on a hormone blocker, suffering from massive hot flashes, emotional, depressed, crying jags, etc. Just Like You. You are not alone! But, I can tell you that my GP said my biggest issue was sleep deprivation(due to massive night sweats and hot flashes)and put me on Gabepentin(which I had previously refused from my oncologist!)to help with the terrible sweats and help me get some sleep. Well, she was right. Since I’ve been sleeping better(and – touch wood – not had more than a couple of flashes per day)I am more positive and have a little more energy. I too have another 18 months on the hormone blocker. So perhaps have a conversation with your GP or oncologist about it. Sleep makes all the difference!
Julie, thank you for sharing your journey and honest thoughts. I missed your posts and am happy to see you back. Sharing your ups and downs, yoga, getting out in nature and being with loved ones is often the best medicine. You’re in my prayers and thoughts for better days ahead…any progress is good progress!
You mentioned that you feel like you’re not a good role model. Quite the contrary, my friend! You are being “real”, and that’s what more of this “insta-gram” world needs. It’s easy to share the glorious stuff, but that’s not reality . When you’re honest and open it makes everyone else feel like their reality is more normal. Thanks for sharing, and so good to hear from you, all of it! Hugs, Ronda
Ditto to all of the above! We all hate that you’re suffering and I join the others in praying for you to find answers and relief. Just the fact of your being so transparent here enables US to give you back some of the empathy you always give others. So thank you for sharing your heart with us, even though I’m sure it was hard to put it in print. And wow – that’s quite an anniversary! Thank GOD you made it through that day and the months and years that followed. And thank you for the monthly reminders to check our boobs! We love you, Julie!
You a role model by how honest you just were with us all when you didn’t need to be…..not by numbers on a scale or whether your following the program right now. Be kind to yourself….
Life has a way of knocking us down sometimes, all we can do is pick ourselves up and move forward in the most positive way we can….sometimes that takes a little more time than others and I think that’s ok.
4 years past cancer is something to be celebrated……I have learned in my own cancer journey to try to celebrate everyday…..even if it’s just the sunshine on my face.
I hope you get some answers soon and you feel better
Julie, I’m so sorry you’ve had so many struggles. It has seriously been a terrible streak!!! I have suffered with chronic pain after a freak incident 5 years ago. I went from being fit and working out 5 days a week to using a mobility scooter. The docs can’t figure it out and this is my new normal I guess. All that to say I get it. Chronic pain is a thief … it steals your joy, your energy, your motivation. But you are an inspiration to so many of us. You are doing the best you can with very tough circumstances. Don’t beat yourself up because you haven’t been perfect. Talk to yourself like you would your very best friend. Give yourself grace. You deserve it.
I will be praying earnestly that you find answers for your pain and things that can help. Hang in there and try to find some joy in every day.
And the menopause brain fog is for real!! I would say the wackiest things. But it gets better. Our bodies adjust I guess. Bigs hugs!!!
I was on tamoxifen for 5 years. I had the same symptoms and brain fog and hot flashes and I had hysterectomy after you double mastectomy. They determined that I had fibromyalgia during this time. Infection can really do a number to your joints also. WW helped me with the inflammation and weight loss helped my joints and exercise helped fibromyalgia. I am so sorry you are going thru this. I feel so much better and I pray you feel better also. Hugs, Wilma Bradley
When you were talking about being a role model, I was thinking I would follow you and then I thought about your day you walked a new path and got stuck behind a fence (I said I probably would have just stood there and cried). Every path has its obstacles and you always find your way back (for me I always think there is light at the end of the tunnel). That’s just what your members at WW and readers of your blog admire about you.
Big Hug! ❤️
Menopause is the worst! And is probably causing a lot of your emotions. I feel for you and hope you will see some better times soon. I’ve missed your post! Best wishes!