Tamoxifen blues?

26 Jun

Today has not been a good day. I am so tired of not feeling like myself. This constant pulling in my body from the surgeries and the implant and the expander and incisions healing . . . there is not a moment where I am unaware of what has been done to my body. I wish so much for a day when I don’t feel it constantly. It ranges from tolerable to painful and uncomfortable enough that I could take medication for it (I have a whole arsenal of things to take). But, I don’t take these medications because I just can’t stand that either. The feeling of being displaced by a drug.

I am starting to think there isn’t much difference anyway . . . being displaced by medication or displaced by feeling this way – physically carved up. I am sorry, I hate to talk this way, but, it is how I feel. Oddly enough, when I had the mastectomy I didn’t feel this way. I don’t know why. I guess because I wasn’t as uncomfortable then. And, also I was so focused on surviving that the physical aspects of it were the least of my concerns.

I just want to feel like myself.

I had planned on going to the gym today to ride a stationery bike (something that doesn’t involve my arms, but, would give me a chance to get a cardiovascular workout). But, I kept trying on one thing after another to wear (t-shirts to work out in) and nothing seemed to work. If I go with something over sized (which is what I would normally have worn in the past) it is too heavy on the reconstructed breast. If I go for something more comfortable, then I have a very obvious uni-boob thing going on.

And, as I was changing from one shirt to the next, it suddenly occurred to me that I will never undress in a gym locker room now. I don’t know why this realization bothered me so much, but, it did. It is not like I particularly liked changing in a gym locker room. But, now I wouldn’t dream of it, it would be freakish I think. That is how I am feeling I guess . . . freakish.

I spoke with my Mom this evening and I caused her to be upset. I hate that. Those days are supposed to be over with, but, I was upset and she knew it and well, she started to cry. I feel awful to have caused, and to continue to cause, this pain. I just want to leap out of my body and go somewhere else, some place where I can’t feel my chest tightened up against me, some place where it doesn’t hurt to reach for something, some place where I can actually move my arms in a normal way (I can’t straighten out my arms at all which makes it really difficult to do certain things). I keep hearing that this will get better, but, I don’t know how or when.

I am supposed to start physical therapy – ideally I would be going three days a week – that would mean three $30 co-pays – so $90 a week. How ridiculous is that?

My band has a gig on July 1st, I can’t play yet, don’t know when I will be able to. They keep asking and I keep telling them what I am told by my surgeon (who has given me so many time frames and every time one passes, she simply gives me a new one – so I can’t trust her or rely on her for any realistic estimates of when I will be back to playing).

My poor Mom. She was just trying to help me, she told me that some day all of this would be a memory and I would look back on it and not think about it like I do now, that I would feel normal again. But, that just isn’t possible I don’t think. I don’t see how, really. I don’t look normal, I don’t feel normal. In fact, in so many places I don’t feel anything. I have no feeling in a lot of my right arm. No sensation at all. Also, in my back and my front there are significant sections of my body that feel nothing. And, I know that having the next surgery will simply add to more of this expanse of no feeling. It is weird. I know I should just be glad to be here. And, I am. But, I am in pain every morning that I wake up and I am so, so tired of this. I wish I had not had the reconstructive surgery – at least that is what I think right now.

I know that if I had not had the surgery then I would be able to move freely – I would not have these limitations. I also would not have all of this extreme tightness, or the pain or the pulling in my muscles. It is such a creepy feeling really. It is bad right now and there are times when it is not as bad as this, where it is tolerable. But, today was just one of those days. I tried to be a little more active – doing things around the house, lifted a couple of things etc., and that caused things to really tighten up and become very uncomfortable.

This just needs to stop. I thought that if I was ever lucky enough to get clear scans – and better yet – hear the words “cured” – that I would have nothing to worry about, that this would be over. But, the physical consequences (and now, I guess the emotional ones) are sort of crashing in on me a bit.

I dread this next surgery – I want to both postpone it and get it over with as soon as possible at the same time. I can’t imagine going through it again and I can’t imagine putting the right side of my body through what the left side just went through. But, that is what I have to do.

I guess getting it over with sooner is probably best. But, I don’t know. I need to get back to my life, to work, to some semblance of normality – but, that seems so far away.

I think what bothers me a lot right now is that I feel that I have really, really been misled by my doctors. They feed you this information about how things are going to be a year or a year and a half out and, well, it just isn’t like that. I suppose if I had a job working for someone else, instead of working for myself, then I would have a very different experience. I would be able to go back to work when I was well enough, see people, interact with people on a daily basis and collect a paycheck during these times. But, having my own business means that I have to be certain that I can work everyday for many months in a row – I can’t risk letting clients down or not being able to keep a commitment. I can’t simply call in sick. And, since my work is seasonal, in order to have work to go back to, I have to be well during the entire busy season, not just part of it.

I called this post “Tamoxifen Blues”. But, maybe it should just be called cancer aftermath blues 🙂 One of the things that is on the Tamoxifen warning label is that it can cause depression (great), anxiety and mood changes (great, great, great).

For me, I know that I am affected mentally when I don’t physically feel well. But, usually I can keep it in check. But, think it is just all getting to me. It has been such a long road and it isn’t over yet. I really don’t know when it will be. I am frustrated by so much right now. I have been having days where I feel well enough to work – that is a really good thing. But, I don’t have work and I can’t be sure for how long I will be able to work – could I work a full week – five days, back to back?

I have no idea.

Maybe next week I will try to structure my days for that and see how it goes. I guess that would be a start.

I know that there are three things that I desperately need to do – 1) I need to exercise, 2) I need contact with people in person, and 3) I need to get back to work – I need to earn money (and if not yet work, then something that has some meaning to it).

So I guess I will make an effort to do something tomorrow.

I do have plans to see a couple of friends tomorrow. So that will force me to get out of the house (I didn’t set foot outside except to get something out of my garage today). That is not good.

Well, sorry for the depressing ramble.

Please keep me in your prayers, I could really use it.

Love and peace,


4 Responses to “Tamoxifen blues?”

  1. Sandy June 27, 2010 at 12:46 AM #


    Still praying! Let me know when you have some time and we’ll go walking. I’ll even drive us to Bolsa Chica if you want. Maybe we can even have a picnic lunch…You tell me what you’re up for, and we’ll do it!


    • cancerfree2b June 27, 2010 at 10:54 AM #

      Hi again,

      Maybe some urban walking is in order. I like the shops down on Second Street and also downtown too. I am open to anything.


  2. cancerfree2b June 27, 2010 at 9:49 AM #

    Hi Sandy,

    You are the best! I could use a change of scenery – that is for sure! How does tomorrow look for you? I could drive to meet you somewhere, or we could both meet at Bolsa Chica if you want to . . . or a new place entirely – I can drive now, so I am okay for distances like that. Maybe we could walk in Long Beach if you want – I haven’t been to that bluff area in a long time or if there is somewhere else you like to go near you. Bolsa Chica is also fine. I just thought I would put it out there.

    I am open to go anytime tomorrow – so you pick. My only constraint is that I would prefer not to be walking during the heat of the middle of the day so I can avoid that extra sun exposure.

    Otherwise, I can go anytime!

    Thank you for you continued prayers . . . they must be working because I do feel better today. Yesterday was just really rough.

    I look forward to seeing you!


  3. cancerfree2b June 27, 2010 at 10:55 AM #

    For some reason my second comment shows up first, oops.


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