Tamox Tears …

What a week … It feels like it’s been a year. :(

The Tamox has not been kind. Nausea. Hot Flashes. Weird puke-burps. No appetite. And of course the worst part for me is the joint pain. The pain went from zero to 60 and it caught me off guard. And I’m only on a 10mg dose. I’m supposed to be on 20mg!! :(

Despite me feeling crappy I was determined to go see my family this weekend so we hopped the ferry and it was really great being able to see my parents and Gerry’s folks …

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But the entire trip I kept thinking “Is this my life now? To be so uncomfortable that I can’t sit for too long and also so uncomfortable that I can stand for too long either?” By the time we got home I was exhausted. Thank goodness I brought my luck-dragon with me for comfort and cuddles.  :)

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Speaking of Fergus … I would like to get him certified as a “PTSD” dog but I can’t seem to find any good solid info (yes I’ve googled) about PTSD Service Dogs for Canada in particular BC. Anyone out there have any info?

Speaking of PTSD the fear I have about the Tamox is intense. I’ve been crying just about every night about the pain. Gerry rubs my back while I sit and sob. This whole year has been about learning to let it go so instead of trying to be stoic – I just let it out. It’s not cute but it’s effective. :)

These Tamox tears are so intense. Gerry told me I was “darker” then he’s ever seen me. It’s much more difficult to recover from Tamox tears … so I’ve made an appointment with a therapist at the Cancer Center. I have a regular therapist but I want to talk to this particular woman at the Cancer Center because she’s my favourite therapist who does the Guided Meditation.

The therapists all take turns running the meditation but this woman is particularly creative. I dig her outlook … so since she deals with cancer patients every day, I think she might have some new insight for me. Fingers crossed.

During one of my nightly melt-downs I had an epiphany. I realized I wasn’t taking everything the Naturopath suggested for joint pain so I went and looked at the sheet of his suggestions for supplements that won’t interfere with the tamoxifen and I was right. I had totally forgotten to pick them up after my appointment with him.

He had suggested Curcumin for joint pain as well as Glucosamine. I think I hadn’t bothered with the Glucosamine because I knew it was made with shellfish so I did a quick Google search found a vegan friendly Glucosamine and the next day I ran to the vitamin store so I could get started.

It’s only been 5 days since I started with both … and I already feel like I’m doing better. I still have achey knees at the end of the night but I don’t feel like jumping off a bridge. So I am now feeling a teeny tiny bit hopeful that I can navigate my way through the Tamox with the support of the supplements.

So let’s all say a tiny “yay”. I’m not ready for a big YAY yet.  :)

In other news – I went to see Carol Armstrong who had come to my YWCA Encore class to talk to us about lymphedema. I am SO THANKFUL that she does this kind of outreach because my arm has been bugging me for a while.

I also want to say thank you to all of you out there in internet land who sent me messages to be mindful about Lymphedema.

I’ve asked my Surgeon, my Oncologist and my Radiologist to look at my chest wall/arm and they gave me a few pokes and told me I was fine. They all said “You’ve only had 3 nodes removed so don’t worry about it”.

My arm has been weak and feeling weird ever since I finished radiation at the end of Dec – but I kept waiting for it to get better. First I couldn’t really use my arm that much because of the radiation burn. Then I thought it was stiff because I had favoured it so much. Then I thought it was stiff/heavy feeling because I had started the Encore program and I was exercising it too much.

Anyway … I had a funny feeling it was something else … so I booked an appointment with Carol for an assessment and guess what. I have edema. Which is swelling in both my arm and my trunk area and some truncal rigidity where I had the mastectomy. It’s early stages and Carol feels that we can get things normal-ish again but it’s going to take some time. She’ll be doing lymph drainage massage and working on breaking down the scar tissue …

So #1. I’m pissed that none of the doctors knew to measure my right and left arm for comparison.

#2. There is no support at the Cancer Center for Edema/lymphedema except for the library. They give you an oncologist. They give you a radioligist. They give you a nurse hotline. They give you mental support with therapy. Where is the lymphedema expert?

#3. If Carol had not done outreach at the Y. And I had listened to the doctors instead of my gut I would be walking around thinking my arm was fine and it would be getting worse. :(

I feel like I SHOULDN’T HAVE TO DO MY OWN DIAGNOSIS. That they should know what to look for. Ugh. So now I have to get fitted for a compression arm sleeve …

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I went to the Rexall located on Nanaimo Street. I love that store. The staff there are so helpful and anytime I’ve gone in there with questions or looking for something medical they go out of their way to help.

The woman who fitted me for my sleeve made me feel so comfortable and kept assuring me that I was going to be fine and that the sleeve would make me feel much better. Then she said “Do you want me to order you a black one? You look like someone who likes to wear black.”

Ha ha. How did she know??  :)

I was talking to Dr.B on the phone the other night about how scared shitless I am not to take this Tamox. I told her that I hadn’t anticipated all the side effects from after cancer treatment.

I was so focused on the tumor and getting through the surgery then the chemo/radiation. I didn’t anticipate the Tamox to be just as difficult. I didn’t expect to have issues with my lymphatic system. I didn’t expect to be as weak as a baby. I didn’t think I would have no appetite and not enjoy food anymore. I didn’t expect to have such deep PTSD and anxiety from all the trauma of cancer treatment.

So fingers crossed this Curcumin and vegan Glucosamine keep doing what they’re doing to help offset the Tamox joint pain and while we’re at it let’s all take a deep breath and ask the universe to cut me a little bit of slack. :)

More joy.
Less pain.
That’s not too much to ask for… is it?

 

 

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22 Responses to Tamox Tears …

  1. Lucy says:

    Sarah…hang in there. At some point I hope you see there is a light at the end of the tunnel and you will feel great. I’m watching my sister go through a similar healing process and even if the progress is slow, it is progress. You got this. You can beat this. You are strong. You are Sarah Kramer!

    And, to @Emiliana, she can kiss my sagging white veggie ass.

  2. Jessica Philip says:

    Sarah, We met at the Prince concert here in Toronto, I was tipsy, you were adorable. I just wanted to say that I have followed your blogs throughout this journey you have been on. YOU ARE AN AMAZING WARRIOR! I pray that you continue on with the strength of one million armies. Tonight I am making a dessert from ‘How It All Vegan’ and I will thank you and what you have taught me about food before we eat it. Thinking of you! xo Jessica

  3. Lucy says:

    Make that @vegan_circus can kiss my sagging white veggie ass. I got so disgusted by her comment that I couldn’t see straight.

  4. Catherine says:

    You are sooo right, you shouldn’t have to diagnose yourself. Lymphodema is coming along, but it’s still not spoken about enough. FYI, I really love the sleeves from Lymphdiva. They’re in the state, and I order them up. People have commented on my sleeve several times.

    Small “yay” for the supplements helping. I hope you find all the support required to sort this out. And that lady at the start who mentioned the personal stuff. . . geez. You really don’t that kind of follower – none of us do.

  5. Catherine says:

    P.S. It’s not too much to ask for. I’m hoping for you that you get there soon.

  6. Tashina says:

    Reading this is so powerful and inspiring. I really applaud you for your honesty and openness. I like that you are telling it like it is, sharing your struggles, and sharing what’s going on. You are kicking ass and you are SO much stronger than you even realize! What you’ve gone through in the past year and how you’ve decided to not let it stop you from living your life is truly inspiring. <3

  7. Tanya says:

    Hi Sarah, I feel like there’s so much I want to say!

    First, don’t worry about @vegan_circus, your life/time is too valuable to waste it on negativity.

    Second, perhaps try these 2 websites to see if they might be able to help you with getting Fergus set up as an assistance dog. You could peruse the sites, but could also try emailing them asking for info/contacts/links to someone that could help you use your own dog. Sorry, I’m in Alberta, but hope these help:
    http://dogswithwings.ca
    http://www.dogguides.com/index.html

    Lastly, please know you are not alone in your recovery. My Aunt is going through almost everything you describe along almost exactly the same timeline. When we visited earlier today we were discussing her new compression sleeve. She has some Physio appointments now too, as well as some exercises she has to do at home. Your candor & honesty here are very helpful to me to help understand what she is going through, so thanks for that, and I hope it helps you to talk to all of us about it!

    Oh, one more thing, the Glucosamine can take some weeks to a few months before you feel better, so that’s awesome if you’re already feeling an improvement! (Er, full disclosure, my experience is animal-based, but I understand the use and effects are similar in humans). And curcumin is what’s in turmeric (the bright yellow pigment in curry), FYI!

    Wishing you much love and patience!

  8. Lisa Kat says:

    Hi Sarah

    I just wanted to thank you for sharing your journey. I am training to be a nurse and your posts help me to understand what cancer patients really go through and how I can be supportive in so many other ways than typical nursing care.

    Wishing you the best!
    Lisa

  9. Lisa says:

    Hi Sarah, I am a fan of your books and am so sorry to hear about your struggle with cancer. My dad is also fighting cancer (prostate) and he is also having trouble with edema in his leg. It’s been going on for years now and none of the docs can figure out what’s going on. Stockings have helped a bit, my mom is doing lymph massage on him nightly, and he’s on pretty heavy dieuretics. He says that general exercise (for him that means walking) seems to help the most so maybe when you are a bit stronger you’ll be able to move around a bit more. It’s so frustrating, and I echo your call for a specialist on lymph edema because clearly there is a need for more research/better understanding about this awful side effect. I think your blog is awesome and that you are awesome and I hope that you get some relief from your pain. I am also extremely envious of your spring photos as warm weather is still eluding us over here in Ontario. I lived in Victoria many years ago and I swoon and sigh at the mention of cherry blossoms :-)

    • Sarah says:

      Hi Lisa
      Lots of love to you and your family … have you googled for a Lymph RMT in your area? Perhaps they can help your Dad with some fresh ideas??

      HUGS!!
      xoxo
      SARAH

  10. Rebecca says:

    No it is not too much to ask for. I think that you do deserve a break. It will get better. I am sorry that you are having such difficulties.
    There is one person I know of that has a more emotional service dog and takes her dog with her internationally. You might want to contact her for some suggestions. Her website is http://gigigriffis.com/. She might be able to help you find out what you need regarding PTSD service dog info. Good luck and hope it helps.

  11. Sneaky says:

    I have found this stage of treatment (post-surgery/chemo/radiation) to be the hardest. No, it isn’t too much to ask for. I’m half a year ahead of you in the schedule and I hope the fact that things are getting better for me gives you hope that what you are asking for is within reach.

    Also, if you come to the mainland would you consider seeing my massage therapist? I have had lots of experience with different RMTs and none of them come close to what she can do…she takes a more holistic approach and can identify problems through touch like no other. Six months ago I wouldn’t have believed that I could be relatively pain-free in my chest/arm/shoulder, but she’s helped me get there. Can’t say as I had lymphadema, but I definitely had cording and all sorts of scarring/fibrosis built up from radiation.

    Lots of loving kindness thoughts being sent your way.

  12. Jen says:

    Hi Sarah :)

    My colleague’s dog, Lola, was just certified as a St. John’s Ambulance Therapy dog. He will now be able to bring her in to Children’s hospital here in Vancouver. I think the info is here, if you haven’t already checked this out ;)
    http://www.sja.ca/English/Community-services/Pages/Therapy%20Dog%20Services/default.aspx

    Best of luck (dragons)!

    Jen

  13. Tiny yay. {{{BIG HUG}}}

  14. Yusuf (Formerly Ammon..in case ppl care) says:

    Sarah…@Eliamiana may kiss all of our asses. Even my semi-vegan amd trying assm hang tough as you have been. I bet yiu get 100 happy tweets fir every asshat one like that.
    You are vegan queen and cancer bitxh-slaoper. We love you.

  15. Denise says:

    Sarah, I get SO MAD because so many women are given totally WRONG information about Lymphedema! I got Lymphedema for carrying 3 heavy plastic grocery sacks in one arm. So many women have gotten it after flying a short plane ride. You are not alone in getting wrong information. The good news is it may settle down. Mine has. I still have to wear a compression sleeve but it is about 50% better than it was at its worst. Denise

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