Depression2

I am in Free Fall but Determined to Climb out of Depression

joyIt’s been the most difficult New Year that I have ever experienced. On a personal level I am trying to approach this year with ease and joy. It’s been two years since Li died and I am drowning in depression. Not sure whether anything I am doing is worth anything. I have never worked so hard without feeling any reward. When I was volunteering at least I felt worthwhile every day helping people right in front of me. I have so many important friends on social media and I have been so fortunate to meet so many special people as a result, but sometimes it’s so hard to keep up with all the information especially as I try to simplify everything.

Meanwhile my very close friend has brain mets and just finished whole brain radiation and it’s just so unfair. I wish the treatment wasn’t so tiring for her. I am so grateful for her friendship and I try to do whatever I can to help but she just doesn’t deserve to be going through all of this. I am glad that we live close to each other and I love getting together especially walking with my dog Shelby to visit.

Twitter : justvisiting123: Why isn't @Jada_FA on the cover ... 2014-02-11 15-01-24Jada my friend on Twitter died at age 34. I only knew her through Twitter. She touched so many of us in the breast cancer social media community. She was so young and beautiful. Here is a stunning picture of her pre-cancer. I did some calculations (hoping my chemobrain math is still working) starting with the fact that there are 450,000 deaths a year from metastatic breast cancer (Source: GLOBOCAN 2008), I calculated that Jada is one of the 1238 people all over the world that died on Jan 28th because of Metastatic Breast Cancer. That’s over 51 deaths every hour.

Pancreatic Cancer Action wish I had breast cancer copy

People have other cancers that are just as important. Yet the Official Pancreatic Cancer Action (PCA) came out with an ad campaign with a bald women’s picture saying, “I wish I had breast cancer.” Many of us connected with social media were outraged. The PCA really doesn’t understand breast cancer statistics. The pancreatic ad also made me sad. My dad died from pancreatic cancer and I know that the disease is usually caught at Stage !V. I did some calculations and discovered that about 22 people die a day from pancreatic cancer in the UK while about 32 women die a day from breast cancer in the UK. I know they wanted to raise awareness for pancreatic cancer but I wish they would come up with a new ad and really raise awareness. Once again we need to be united when it comes to all cancers.

Tamoxifen Brain_1379462921276_3014655_ver1.0_640_480On a personal note I am thinking that maybe it’s the medicine I am taking that is making me extra depressed. I took the awful tamoxifen for five years. Now with the ATLAS and aTTom studies at ASCO 2013, they are recommending taking tamoxifen for ten years instead of five. My oncologist suggested I try raloxifene (Evista) which is supposed to be a “tamoxifen light.” When I first took it, I was amazed that there were no side effects.  But during my third month on it, I started getting non-stop hot flashes again, blurry vision, and feeling horribly depressed.

I am ER+, PR-, Her 2-.  Every study I have read about tamoxifen (for example: http://jco.ascopubs.org/content/23/4/931.long) and PR- when ER+ states that this is known to be resistant to tamoxifen. In San Antonio sitting next to Dr Dana I appreciated when she pointed to the speaker who I believe was Jason S. Carroll, PhD right as he said “ER+/PR- responds poorly to tamoxifen.” Thank you Dr. Dana for acknowledging the research I discussed with you about this, because I have heard different opinions from doctors. Unfortunately the data presented didn’t have the study published. I have suffered with this stupid drug especially being spooked by a recurrence of my breast cancer after not taking the tamoxifen.

Breast-cancer-revelation-other-hormone-receptors-could-be-targeted-for-novel-therapiesI apologize for those who don’t know theses technical things about breast cancer and to those who do since only 3-5% of cases are ER+ PR-. and there are very few studies since it’s not common. I miss being able to talk about all of this with Li. We loved discovering all the important information related to our cases. Because she was triple negative early on we didn’t understand that treatment options are limited. When she started hospice we both laughed at how much we thought we understood about breast cancer at the beginning when we went through chemo together. We both realized how little we knew until this disease took over our lives.

2225The official Advocates 4 Breast Cancer website is coming together, yet we hit an unfortunate snag. Without getting too detailed, we needed to change the domain hosting company to get ready to launch the new site. Our emails had to go with the domain server and due to technical issues some emails were lost and lots of time was spent on the issue. The problem took a huge chunk of time glued to the phone and computer with support, with lost emails and all sorts of computer issues. Today a miracle happened and after having the engineers look in to the issue, crossing my fingers, I put the settings in and the current mail is working. I apologize to everyone who may have tried to contact me and thought I didn’t respond due to having my email missing.

So to recap. I got very depressed taking a medication hoping to avoid another breast cancer recurrence that I am not sure can help me anyway. With research and a note to my oncologist, I just stopped taking the medicine. Now I hate having to consider taking an antidepressant and I hope the new one works. That’s the problem with medications. Each one causes the need for another one and then it goes on and on. I have had problems with many ones I’ve tried because they made me sick.

no-health-insurance-5Time has been lost over these technical problems with the web site. So please bear with us as we iron out issues.I personally have to make going to the gym a priority and make sure I am taking care of myself. It’s so hard with so many problems all over me. I also have to do another surgery on my breast in a few weeks. I could start another rant about my health insurance especially because it’s gone up 40% in price over the past few years including a recent 15% hike. It’s frustrating financially, time-consuming and I know I am not alone. Scorchy wrote a post that had me in tears about her issues and the financial drain called The Road to Ruin. Yet I am so grateful that I have insurance and my awesome plastic surgeon accepts it. She has fixed some previously botched work. This will be my ninth surgery on my breast, but I am lucky I tolerate surgery very well and I trust Dr. La Via. I  love my docs.

PIIS1470204509703201.fx1.smlI am very upset about my close friend’s metastatic cancer and brain mets. I am grateful that she still keeps me laughing even through difficult circumstances. She is amazing. I luckily have lots of support from family and friends and I know that what I mostly need to do is breathe and appreciate things that really matter. I think the hardest part is feeling no control over outside events. It’s such a combination of frustrating events and I just have to pass through this, one step at a time. With all that is going on I know that I must make the most out of every day and not let these things drag me down.

It’s so important to be in the moment and find daily joy in things. So with that in mind I remind everyone reading and myself that sometimes things can get overwhelming. I will trust that everything will sort itself out and try to find joy in things again. It’s best to allow myself to understand that’s all I can do is keep going and know that things will get better.

IMG_5794Luckily I have Shelby and she is a great source of joy in my life. I thank Li every day for the gift of Shelby. I made a silly movie trailer of Shelby with my iMovie program that makes me smile. I couldn’t get the program to make things perfect, but that’s OK. I have to let go of being a perfectionist. I hope it makes you smile.

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36 Comments on “I am in Free Fall but Determined to Climb out of Depression”

  1. kymlucas February 12, 2014 at 11:15 pm #

    I’m so sorry to hear you are in this dark place. Please, please hang in there. Sending positive thoughts, good karma and prayers.

    • Susan February 12, 2014 at 11:49 pm #

      Thank you for the positive thoughts and prayers. They are really helping.

      • kymlucas February 12, 2014 at 11:52 pm #

        I know sometimes it just helps to know you’re not alone.

  2. nancyspoint February 12, 2014 at 11:16 pm #

    Hi Susan, Well, what can I say that might help? I’m sorry about your friend’s brain mets. I feel awful about Jada’s tragic death. There continue to be so many losses, as you pointed out. On top of everything else, I’m sorry you are dealing with depression too. Sometimes it seems as if the bad stuff just keeps piling up. Rest assured what you are doing matters – a lot. I hope it helps to know that so many others out here care about you. Some hugs full of love and support are heading your way right now from me to you. And I’m so glad you have your sweet Shelby. Seeing that sweet face does make me smile. xxx

    • Susan February 12, 2014 at 11:47 pm #

      Thank you Nancy! I can feel all of the love with the hugs and especially all of your support. You are such a special person and I am glad that Shelby brought you a smile. You always know just what to say! I send you tons of hugs back.

  3. The Accidental Amazon February 12, 2014 at 11:20 pm #

    Oh, Susan, big hugs. Been there. All of it. xoxo, Kathi

    • Susan February 12, 2014 at 11:40 pm #

      Thanks Kathi. I know that I am alone and sorry you’ve been there too. Big Hugs back!

  4. scooby101 February 12, 2014 at 11:33 pm #

    Would be interesting to see if the new drug is the source of the depression. You’re surrounded by a lot of challenging issues too. Maybe it’s a combination of things. When everything piles on you at once it makes it even tougher. But whenever you get down, just look over at Shelby. She will definitely brighten anyone’s day!

    • Susan February 12, 2014 at 11:38 pm #

      Thank you Julie so much. I know you understand this so well and I am so grateful that you are here and so much help. You are so right about Shelby!

  5. Matthew Katz (@subatomicdoc) February 13, 2014 at 12:55 am #

    Susan, I’m so sorry to hearing you are having a difficult time. It’s normal to go through periods of feeling depressed but it doesn’t help when you have a lot coming at you all at once.

    I think it’s great your website is coming together. I’m going through the same painful process. Snags seem to be the rule of thumb. It sounds like you’re back on track and hope it’s smoother going forward.

    Your sense of loss for friends struggling and who have passed is normal, too. But I’m thinking of you and sending you my support, it seems like clearly others do too :)
    Best, Matt

    • Susan February 13, 2014 at 2:08 am #

      Matt I am so touched by your words. Your compassion is so heartwarming. I also really appreciate your support. And yes the snags are frustrating, but they will work themselves out. Thank you for helping me feel better. Best back to you – Susan

  6. sandy February 13, 2014 at 1:05 am #

    Prayers sent up Susan. I hope it passes soon. Few things in life are as painful as depression. Sandy

    • Susan February 13, 2014 at 2:19 am #

      Thanks for the prayers Sandy. They really help. I am sure this will pass. xoxo

  7. Cancer Curmudgeon February 13, 2014 at 1:25 am #

    So sorry to read the first part of this post, but ending is wonderful. Give Shelby the Oscar (am a pet sitter by profession, so perhaps am biased).

    • Susan February 13, 2014 at 3:14 am #

      I love your bias. Pets rule. Thanks for making me smile about Shelby’s Oscar! xoxo – Susan

  8. Maria Fowler February 13, 2014 at 2:42 am #

    Susan, I can only speak for myself but your work is a god-send to me. I’m muddling along trying to reach some giant goal, I’ll never possibly make and you are right there to help guide me to the information I need.

    I use your work to find studies of interest to women with metaplastic breast cancer. You are helping me create a place for women to gather and create a supportive community. In turn that community is going to help me get the attention of the research community. So you are helping bring those groups together so that we can make progress on metaplastic breast cancer.

    A lot of times it does feel like I’m sitting at the laptop and talking to myself. I too wonder if anyone hears me so I do understand that. But you should rest assured that your work is of great value to us all and me in particular. I thank you from the bottom of my heart. Hope you feel better soon.

    • Susan February 13, 2014 at 3:30 am #

      Maria, I admire all of the work you are doing for metaplastic breast cancer. I am so glad that my studies are useful. Your support means the world to me. I think we both need a dose of confidence that we are going to reach our goals even though “the water is muddy” on the way. Thank you so much for all the kind words! xoxo – Susan

  9. Breast Cancer Authority February 13, 2014 at 2:49 am #

    Reblogged this on Breast Cancer Authority and commented:
    Honest and heartfelt feelings shared from a very personal level. Wow, so worth the read. Thank you so much for sharing. I know it ain’t easy: never is.

    • Susan February 13, 2014 at 4:55 pm #

      Diana thank you so much for reblogging this post. I am so uplifted by so many positive responses.

  10. Kate, of Kate Has Cancer February 13, 2014 at 4:36 am #

    Oh Susan. I am sorry you feel this way.

    I was shocked by Jada’s death too. She was so kind. I miss her. And having mets myself, her death hurts and scares me.

    I can hear the depression in your writing. My husband suffers from it too. “Suffers” just begins to describe it. I hope you will soon find something that can lift your mood. I wish knowing you have the community’ support was enough to ease the depression. You accomplish for us, you know. Your voice makes a difference. Thank you.

    May the coming months bring you joy and comfort.

    • Susan February 13, 2014 at 8:00 pm #

      Kate, I am so uplifted by the outpouring of support. I am sure for you Jada’s death hurts and scares you especially because you have mets. I am sorry that your husband has depression too. I am confident that things are going to get better and I thank you so much for your well wishes. xoxo – Susan

  11. Beth Gainer February 13, 2014 at 5:30 pm #

    Dearest Susan, I’m so very sorry about your friend with brain mets. Cancer is a horrible thing and no one deserves it. I know how you feel about Li. I feel the same way about my terrific friend Faun who died from metastatic breast cancer. I miss her everyday. You have so much coming at you at once; it’s understandable why you feel the way you do. Cancer is all about loss. I’m also sorry about Jada. I hope you have support resources in place. Maybe grief counseling would help? Just know you are not alone, and there are many people who are going through what you are. Depression is real.

    I have a friend with Stage IV pancreatic cancer. I know he’s going to die and it makes me sad. It’s so hard to be in that deep dark space of depression. Since cancer, I find myself there too often for my liking.

    On a good note, your video of Shelby was sweet and adorable!! What a cutie pie.

    Sending you much love,

    Beth

    • Susan February 13, 2014 at 6:29 pm #

      Beth you are also dealing with a lot right now too. I am sorry about the death of your friend Faun and your friend who has pancreatic cancer right now. Yes cancer is all about loss. Since I usually am very upbeat it was hard to admit that I am depressed but I know that I will lift out of this. I fortunately do have so much support and for that I am very lucky. Sending you tons of love back – xoxo – Susan

  12. Lori February 14, 2014 at 1:18 am #

    I’m so sorry you’re in this place, Susan. Perhaps it helps a bit to know that we’ve all walked that path, and in a sense you’re not quite as alone as you might feel! Sending you love and light…hang in there! XOXO

    • Susan February 14, 2014 at 5:10 pm #

      Lori it really does help knowing I am not alone although I wish that so many didn’t have to walk this path. I promise I am hanging in there and I know everything is going to be alright…xoxo – Susan

  13. Mandy Dee Twitter February 14, 2014 at 3:06 am #

    Can I write about this on my twitter feed?

  14. vtashman February 14, 2014 at 3:56 am #

    Hi Susan, thanks so much for your honesty. So many of us can celebrate being a survivor but in one day, it can all change. I miss Li too and worry a lot about Annette. Frankly I hope you feel better after stopping Evista but it may not be that simple. I’m hear for you whenever you want to talk.

    • Susan February 14, 2014 at 5:19 pm #

      Vicki I think that writing all if this really helped me realize that I have so much to be thankful for. I am so touched by everyone rallying around me that I am sure this is going to pass. I am talking every step to make sure I can cope with everything happening around me and I know that I am not alone..Thank you for all the support. Hugs and xoxo – Susan

  15. Marie Ennis-O'Connor (@JBBC) February 15, 2014 at 3:56 am #

    Oh Susan, dear Susan, I am only just catching up on this now. Thank you for sharing your vulnerability with us so openly – I honestly believe we can heal not just ourselves, but so many others who are suffering with depression – and so many are- by talking about it. You know depression hates expression! I am so, so sorry to hear you are struggling and I am here for you anytime. I am going to send you a private email too. Holding you in love and light and wishing you strength – much love, Marie xxxx

    • Susan February 15, 2014 at 11:19 pm #

      I am truly grateful for your friendship. Although it was hard to admit that I am depressed I realize that I am not alone. Depression is no fun. Yet knowing that you are in my corner ready to help in any way is so uplifting that I know everything is going to be OK. I do see some light at the end of the tunnel and although this is going to take time, I am on the right path. Thank you for all the love and light. Sending so much love back to you – Susan

  16. karen sutherland February 15, 2014 at 3:30 pm #

    dear Susan,

    thank you so much for sharing your story. I am so sorry for the loss of your dear friend, Jada, so lovely, so young, gone much too soon. and missing Li must be so very hard. and now, worrying and sad for your friend with brain mets. all that grief and all the other things piling on in such a short period of time – it’s just too much. by reaching out for help and support, it’s good that you can see just how many people love you and know that you are not alone. and I can feel your determination to do all you are able to get better. thank goodness you have Shelby – such a sweet-souled companion that gives you unconditional love and comfort. please keep writing and letting us know how you are doing. I am sending you loads of warm hugs for comfort and healing, along with…

    much love and light to help you find your way,

    Karen XOXO ps – my Sadie-girl dog sends you and Shelby happy tail wags!

    • Susan February 16, 2014 at 12:19 am #

      Karen you have such a gift with words. You know just what to say to help me. I know everything just piled on me and it all hit me so hard, yet as you can see I am going to get through this. It is so wonderful that we have this community. I’m am so touched by all of the love coming at me. Thank you also for the happy tail wags from Sadie. I send you back tons of love and light and extra happy tail wags from Shelby! xoxo – Susan

  17. eileen@womaninthehat.com February 16, 2014 at 1:28 am #

    Susan, you have such a sweet spirit and you’re such a gift to us all. Thanks for your honesty. You certainly are not alone. Sending you much love and many hugs.

    • Susan March 25, 2014 at 10:40 pm #

      Thank you so much Eileen. I continue to try to keep myself focused while I am aware that this depression stuff doesn’t have an easy fix. I do feel your love and hugs and they mean the world to me. Because I know if I just do the best I can with so many incredible gestures of true help from those that care time does help heal. There are so many other people who are facing such huge obstacles that I just keep reminding myself to be grateful for so much. Hugs and love back to you!

  18. gshm50 May 30, 2014 at 6:42 pm #

    Susan: This was an excellent post, as was your re-blog of the post from I Hate Breast Cancer. This is my first time visiting your blog, and it is very powerful. Keep on writing and thriving the best you can! My mother beat breast cancer some years ago because it was caught early and she opted for a proactive double mastectomy that seemed to work well for her. At the time I was shocked that there weren’t better options for Stage IV patients, and I see now that not much has changed at all as far as that goes. I keep thinking that decades of research should have us further along in the fight. It seems like some new thinking is needed that revisits and questions even our most basic assumptions about what cancer is and how it operates, and a lot more focus on the patients who need the most help in later stages of the disease. — Sherman Morrison

    • Susan May 30, 2014 at 7:25 pm #

      Thank you Sherman for visiting and I promise there’s more coming. I am glad things worked so well for your mother and I also agree we need better answers for late stage breast cancer. – Susan

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