Archive | June, 2010

Working on whipping myself back into shape . . .

28 Jun

“One of the basic insights of truth is the awareness that things may happen around you, and things may happen to you, but the only things that really count are the things that happen within you. Whatever circumstances we encounter, we are still in control of our attitude. We can always choose to respond with forgiveness and love.”

I am not sure who said that, but, I came across it and am borrowing it.

Here is hoping for a better week ahead!

Love and peace,

Lisa

Sunday is better . . .

27 Jun

Well, I woke up on a better side of the bed today, fortunately. I was able to get a bit more sleep than days past and that is clearly a help.

Yesterday was tough and the days preceding it were not much fun either. I have to get adjusted to this Tamoxifen. It reduces the risk of recurrence in ER+ (estrogen responsive) cancers by 40%. My oncologist considers me cured . . . but, that is based partly on some assumptions that I will do certain things. For example, she presumes that I will exercise 5 days a week (of the kind that raises your heart rate, so cardiovascular exercise), she presumes I will keep my weight under a certain amount, that I will stay on a low fat, organic, high in vegetables and fruits diet, and she presumes that I will take Tamoxifen everyday for the next five years.

She has been quite complimentary to me about how I have – as she puts it – attacked the cancer. But, it has taken so much energy and work to do all of these things . . . just constantly thinking about my food intake (how much, what, when) has been a major part of my day it seems. And, quite frankly, I just want a break from all of it.

I slacked off of my regular, anti-cancer diet for part of this past week. Normally one day of being off track would make me nervous. But, this time, I just couldn’t care about it anymore. That only lasted about four days. I am back on track now. But, it is exhausting sometimes.

Anyway, I am feeling better. And, oddly enough, yesterday I started back on my healthier food (not that I went crazy and ate horribly all week or anything) and it seems to have perhaps made me feel better this morning? I don’t know if that connection – in just one day of eating well can make that kind of a difference. But, I know that when I feel as if I am failing by eating things that are not in the right categories for me, that it does affect my mood and outlook.

I have friends who are cancer patients and survivors and they so often comment to me (when they see me eating, or rather, refusing cookies at a support group, for example) that they could “never give up sweets” or they could “never give up coffee” or meat or french fries or diet coke . . . etc.

And I just find that incredibly shocking. Here you are fighting this disease, fighting to keep it from coming back and letting doctors carve up your body and pump it full of toxins so you can live and you can’t give up having a diet coke? I think that is so crazy. And, I also think it is sad. Sad to tell yourself that you have no control over your own actions and sad to be dumping things into your body that absolutely put you at greater risk of either not surviving or of getting cancer again.

And sometimes I hear this from my fellow cancer patients – about that “super healthy person” who runs every day and then is suddenly struck down by a heart attack. And they tell me about some person who drinks x amount of alcohol every day and smokes every day and lived to be 100 years old. I don’t know. They tell me these stories to justify their own lack of involvement in their diet I suppose – I don’t know. The last thing I want to do is to make another cancer patient feel bad about what they are doing. It is not for me to tell someone else how to eat or live. But, I think that what we do does matter. I know that for me, part of why I do what I do is because I feel that it gives me some amount of control over this nightmare. It makes me feel as if I am doing something pro-active (and I hope and pray that I am).

It reminds me of that story about the guy who is told to evacuate his home because there is a flood on the way. He refuses and says, “I’m not worried, God will save me.”

The flood waters rise and he climbs up on his roof to escape the water. Someone comes along in a boat and says, “Jump in, I will save you” and the man says, “No thank you, I am know God will save me”. Then along comes a helicopter rescue team and they throw down a line to the man and tell him to grab the line and he tells them, “No thank you. I know God will protect me.”

The flood waters rise and the man drowns. He gets to heaven and when he sees God he asks God why didn’t you save me? and God replies, “I sent you someone to evacuate you, I sent you a boat and I sent you a helicopter . . . ”

I have a brain and the ability to read and study and do research. And, I believe it is my obligation to use those tools that I have to do my very best to survive this thing. It is sometimes overwhelming and it sometimes doesn’t seem possible. But, most of the time it is possible and I just have to stay on that track.

So this Tuesday I am going to go back to my support group (but, with my own snacks, I am serious, it is a sugar, brownie, cookie, cake, and soda fest – crazy). I think it will help me to see them again. Inevitably there are women there who are newly diagnosed (that is just the absolute worst time). And, as difficult as that can be to hear about, it is really helpful to be able to help them by sharing how I got through that time. It is pretty uplifting actually, makes it seem like there was a reason for what I have been through . . . or at least that something good can come out of it.

Now, if I could just get them all to STOP eating all of that sugar . . . 🙂

Well, all I really wanted to say is that I am feeling better and I guess I wanted to apologize for my rant from yesterday. I thought about deleting it. But, it is there and I am going to leave it. If for no other reason than to remind myself that I can have a bad week and then wake up to have a better day. And, thank you Sandy for being a big part of that better day! 🙂

Please continue to keep me in your prayers.

Much love to you all,

Lisa

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,

Lisa

Pictures from the past six weeks, surgery, etc.

26 Jun

Hi All,

Here are a few pictures from the past six weeks (I will be six weeks out of surgery this Monday – so glad to be on this end of things)!!!

Here you go . . .

Not looking my best - the day after surgery 5-18-10

Roses from a friend to brighten my room.

More fun - running out of places to get a vein . . . this has to be my least favorite place to have an IV - in my neck.

Close up of neck IV (I hope you've already had your lunch) 🙂

Beautiful flowers from family and friends 🙂

Post-op - getting IV antibiotics at home (I had a nurse come in daily for three weeks). So glad to get rid of the IV pole in my living room 🙂

Memorial Day trip to the ER

We can rebuild her! (Memorial Day at the ER).

Slept for the first time in a long time . . .

26 Jun

Well, I didn’t get a full night’s sleep, BUT, I did get some sleep last night. What a difference that makes. This past week has been a mess. I have missed (as in completely forgot) two doctor’s appointments and just all kinds of things. It is probably a combination of the medication and lack of sleep. Whatever it is, it has not been ideal. I have been incredibly forgetful to say the least.

And, I really hate feeling so out of it. I gave myself a couple of days off from Tamoxifen and I was not only able to sleep, but, I feel better. But, I can’t be off of it – not for five years. So, I need to get used to taking it. My oncologist tells me that I need to give it at least three or four months to see if my body will adjust

But, hopefully today will be the start of better days. I feel the difference from having had a little sleep.
I still feel cloudy, but, hopefully things will “clear” up soon. And now I am going to take a pill . . . blech!

Love and peace,

Lisa

Sleep eludes me . . . ugh

23 Jun

It is 4:30 in the morning and I still can not sleep. Last night wasn’t a whole lot better . . . I could not get to sleep until about 2:30 am and then woke up at 5:30 am. I believe the culprit is Tamoxifen. I am supposed to take this drug everyday for five years. It is a tough one.

This is my second time starting the medication. I originally started this drug earlier in the year – not long after completing radiation. I had a lot of side effects (including: headaches, dizziness, nausea, extreme night sweats and insomnia). But, I was still going through treatment (Herceptin infusions every three weeks) and I was still recovering from the effects of chemotherapy and radiation.

My oncologist had me stop taking Tamoxifen because of the side effects (but, with the expectation that I would resume taking Tamoxifen once I completed the Herceptin treatments).

So now I am back on Tamoxifen. I have to say that so far, the side effects are not at all as bad as the first time I tried taking it. Hopefully the side effects that I am experiencing will lessen over time.

I started the drug at a lower dose than what I will ultimately be taking. I will gradually build up to the full dose over some time. Then, I am told, that I should give it about three to four months to see if my body adjusts to the medication.

I hope that the side effects will lessen and soon. But, I am guessing that I may have to expect an increase in side effects with the increase in dose . . . but, I am hoping not. I mean why NOT? I could be lucky with it. I hope that I am.

Tamoxifen reduces the risk of recurrence by 40%. Although I am told I have been cured . . . my oncologist expects me to be on Tamoxifen and I believe that it is part of (my taking it for five years) that she is basing my cure upon.

I am not certain, it is all a bit unclear what it is based upon. All I know is that I am grabbing onto that word . . . cured. Yep, has a very nice ring to it. 🙂

Five weeks out from surgery . . .

22 Jun

It has been five weeks now since my surgery. I am definitely feeling better. Still slow, still not upt to full speed (whatever that is, it is kind of hard to remember now :)). Anyway, I am doing better.

I continue to see my plastic surgeon every week to see how the healing from surgery is progressing. So far things seem to be going well. I see my plastic surgeon again tomorrow afternoon. Hopefully she will clear me for a shower . . . the sponge bath thing is getting old.

Well, there is not a whole lot new to report – getting better, not fast enough, in my opinion . . . but, better all the same.

Love and peace,

Lisa