I am not in my body…

I am not in my body…

I have completely disassociated and feel like I am floating above myself most of the time. Why? Because I’m in pain. The Tamoxifen is hurting me. My joints are aching. My bones are aching. I can’t seem to get relief no matter what I do.

And I’m only on 1/2 a dose.  πŸ™ This is the medication they want me to take for 10 years.

Gerry says I’m like a helium balloon … he’s hanging on to the string and I’m floating away.

This is my 2nd time around trying Tamoxifen. This is a different brand of Tamox and we were hoping that I wouldn’t have any issues with it. I’m trying SO HARD to stay on this pill as it is part of the treatment recommended by my oncologist… but in 30 days my life has gotten really small.

I can’t walk on the beach anymore because I’m afraid my legs will give out. Walking up the stairs has become difficult. I spend more time in bed then I do out of bed.

Everything is uncomfortable. All things I normally do to self sooth – are gone. I can’t wrap myself in a big scarf (I love a big scarf) because I am having hot flashes. I can’t snuggle with Fergus because I hot flash. I can’t snuggle with Gerry because I hot flash. I can’t snuggle under covers… because I hot flash. I can’t even tolerate a hug for more then a few seconds before I hot flash.

I can’t go sit in a hot bath and relax (because I have lymphedema and have to avoid hot water). Because of my lymphedema I have to sleep with a pad that sits on my chest to help move the fluid away from my trunk. I attach it to my chest by wrapping a chest binder around me. Try and sleep with that on while you’re having hot flashes as you sleep and I dare you not to cry.

Speaking of Lymphedema I have to wear a compression sleeve on my right arm to help bring down the swelling. It’s like Spanx for my arm. Have you ever had a hot flash in Spanx?? It’s torture.

I can’t go on long walks (or even short walks) with the dog (because my knees are killing me). I haven’t been to Thetis Lake in forever … There is no way I could do it. πŸ™

60a566bebd2311e391a2121a17c5eeae_8I haven’t had friends over or visited family in weeks. I’m canceling visits and spending more and more time in bed because sitting for too long hurts.

It hurts to stand. It hurts to sit. I hurt. I hurt. I hurt. Yesterday I stepped out of the car and almost fell because my knee gave out. WTF.

My brain is giving out too. It’s hard to have a conversation because I’m not in my body. I’m in that place you go when your body is in constant pain.

My teeth hurt. My gums are swollen. I have mouth sores. I feel like I’m getting the flu … but it never lets up.

The hot flashes are intense. The name Hot Flash should be changed to Hot Attack. First you feel woozy and uncomfortable. Like you’re in a dark basement hiding from someone who is trying to kill you. You have that feeling of fear deep inside you start to bubble up… Then the heat starts. It’s like holding a light bulb against your skin from the inside. Hot Flashes are a lot more uncomfortable on this medication then when I was on chemo. Those were more like “hot sweats”.

I tried to take Fergus for a walk around the block and I got to the end of the street and had a major panic attack. What if I can’t make it back? What if my leg gives out? We turned around and came home … Great. now I have agoraphobia?

I looked at the calendar and realized I have been on Tamox for 30 days and it feels like 30 years. I stopped taking it on Friday. Today is Tuesday and I already feel a little better. The fog is lifting and the pain is subsiding. What is this pill??

They keep telling me this pill can reduce my chance of cancer recurring … but at what cost? What is this pill doing to me?

Everyone I’ve met (through my cancer programs) who is on Tamox says the same thing. That they are in pain. That it’s uncomfortable … but that they do it anyway.

I think they are talking about a different kind of pain then I’m having. I have a high tolerance for pain … I’m a tough chick. Scrappy. I have my chest tattoo’d for fucks sakes. I can take pain. But this pain? It’s unbearable. Unrelenting. Feeling like this? I can’t do it.

I feel like a wuss.

Except that I’m NOT a wuss. I got through a mastectomy, chemo, radiation and it was REALLY FUCKING HARD but I got through it with smiles and laughter and friends and family and Fergus.

But this little white pill? It’s knocked me to my knees. Tamoxifen has drained my light. My normally glass half full is now empty.

We are seeing Dr.B on Wed to talk about what to do next …  πŸ™


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32 Responses to I am not in my body…

  1. Wendy Burmister Downey says:

    If you really can’t do the drugs what about alternatives? Look at Dr Gonzalez (http://www.dr-gonzalez.com/index.htm). Try a naturopath. I am not saying I don’t think the drugs are a good idea but if it doesn’t work for you there are other methods worth looking at. Just an idea to think about.

    • Sarah says:

      Thanks Wendy. I have a natro and he has me on supplements to help support my body while I take Tamox but it’s not enough…

      • Sarah, not an endorsement or anti-endorsement, but I know Dr. Gonzalez’s wife if you want an intro.

      • Debora says:

        Sarah, friend of Kimmee’s here. I used to work in cancer research (as an analyst, not a doc). Have you looked at DIM? My knowledge is a bit out of date, but there were some clinical trials going on I think that suggested it might be a good tamox replacement. I see one running now looking at them together too, that might at least reduce the amount of tamox you need. So sorry you’re going through this – it should be freaking done now πŸ™

  2. Vicki says:

    Woah….you are not a wuss. You must know, that those observing your journey from afar, see you for what you are. The strongest, wisest, toughest, most graceFULL person they’ve ever followed. You have opened your heart and your journey to the world, offering support to those silently suffering, and perspective and gratitude to those that are not (in this moment). I won’t insult you with ignorant self help quotes or advice, but please know that the world thinks you are fucking amazing. Hang in there and know that you have SO MANY people thinking of you and sending positive energy your way.

  3. Shannon says:

    Hi Sarah
    I read your blog all the time and I always want to post something giving you hope and reassurance that this won’t last forever but who am I to say that? I have never been through what you have been through and I hope I never do but what I have done is many marathons. While that is not the same thing in ANY way I think it’s the closest to pain and mental hell I can relate to the horrible experience you are going through. What gets me through some of the hardest parts is a mantra. I know, I know, it sounds silly but when you can’t move another inch and every piece of your being is yelling at you to give up, I repeat over and over ” you are better than this, you are the best thing in the world”….So, I will say this mantra for you….Sarah, you are better than this horrible little pill….You are the best thing in the world…….
    Sending you oodles of support and mantras….

  4. Lucy (moon_grrl) says:

    I’ve said it before and I’ll say it again: you are sooooo not a wuss. You are one of the strongest individuals I’ve ever had the privilege of knowing on this little planet of ours. My mom served a ten year Tamoxifen sentence. For as thankful as we were to have something that might reduce the chances of her cancer recurring… well, we were even more thankful when she was done with it. To this day I don’t know what the hell was in that little white pill. You are on my heart and mind, Sarah. I’ll be sending good thoughts and positive energy Wednesday when you see Dr. B. Hopefully you’ll be walking in the sunshine with Fergus soon.

  5. Rebecca says:

    You ARE NOT A WUSS repeat until you feel better. All of us are so proud of you and all that you have accomplished in such a short time. Only YOU can decide what is best for you. Talk to your Dr. about other alternatives if any and take it from there. Sometimes you have to choose the little green pill instead of the little white pill sorry Matrix reference counldnt help it. Tell your Dr. your symptoms and how it makes you feel. Maybe there is an alternative, alternative “medicine” you could take instead of this stuff that makes you feel so lousy.
    Take care and stay strong.

  6. Colleen says:

    We were just reading some stuff about power & vulnerability in my Black feminist thought class! It seems way strong of you to say that you’re hurting and proactively find alternatives rather than conceptualizing strength as putting yourself through more hell. I guess I’m just saying that you still seem like a badass tough girl to me — I hope you can find a good alternative with your doctor.

  7. Catherine says:

    So not a wuss – so not. It’s hard, and it sounds like it’s hitting you harder than most people react. I’m so sorry you are feeling this pain and floating – I hope you can be given better options with your visit to the doctor.

  8. Sheila says:

    I had breast cancer 13 years ago, but no Tamoxifen because I was estrogen-negative. We endure surgery, chemo, radiation and other treatments because we are willing to do what we believe is necessary to get rid of the cancer. After all that to get well only to start feeling like hell because you are taking a drug to try to prevent a recurrence! Weigh the benefits vs. the risks and don’t make decisions based on fear. I believe you defined above what you absolutely need in a recovery plan: being able to enjoy time with family and friends, getting some exercise, and walking your dog!

  9. David Miller says:

    No, dear Sarah, nothing wussy about you: chronic pain wears people down. I have no wise advice or inspirational message, but please add me to the list of people sending love and (gentle) hugs.

  10. Beth says:

    My knees hurt today too. I had the mouth pain in the beginning. It stinks. It has gotten easier over the months but it still stinks. I hope your doctor was maybe able to brainstorm alternatives. Thinking of you.

  11. Hey dear Sarah,
    I was caring for my mum in Calgary, back in 2006, when I came across your book, and it totally gave me respite from the crazy world of hospitals and power-of-attorney and the emotional trauma surrounding what was going on with my mum.
    Your vitality and colour and beauty and strength of character was and is a beacon for me <3
    I, like so many others, am sending all my love and energy, and holding you in my prayers…
    I hope so much that you can connect with the wellspring of all-good-things rising up around you, from your loving followers around the world,

    Sunny warm wishes and hugs from Italy,

    Clare xx

  12. Yusuf says:

    I have had cancer twice (I always say I had cancer but it never had me) and everyone reacts differently. 10 years..loom into alternatives.
    Yes you want to live as long as you can but it Tamoxifen is metaphorically killing you, you do what you have to do. In the end it is your body and your life.
    Maybe half of half a dose. Keep weaning until you can endure. If it is zero then alternative is your, well, alternative.
    I think you are incredibly strong and am cheering you on from across the country.

  13. Dale says:

    I feel your pain. I would, if I could, take it from you. Do not despair and keep up the good fight. This may be a pyrrhic victory but it will be your victory.

  14. Andrea says:

    Dear Sarah,

    here in Germany the mistletoe treatment is well known as an alternative therapy.
    Maybe it’s interesting and helpful for you.
    Get well soon.


  15. Kali says:

    I know this is an older entry but just wanna throw my 2 cents in. Not everyone can tolerate Tamoxifen. It’s a good thing to take (according to the research we have currently), but how good is it if it makes your life complete HELL? Quality of life has to be considered, too.
    I’m sure you’ve thought of all this before. Every person and their body are so unique. Because of my work (oncology clinical trials) I’ve often thought about the “torn” feeling your sort of situation can create. There will always be people who aren’t able to adhere strictly to the protocol, and maybe that’s not always a bad thing. The arms of research reach only so far – some things are just not known. πŸ™‚

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