If I could have just one day

If I could have just one day where I didn't have to think about the fact that I had breast cancer, what a relief it would be. I would settle for just one day. To remember what that feels like - what it was like before. There is before and after - and it will never be what it was. The time when I didn't regret everything. What I would give not to regret everything. One day where I didn't have to live under a shroud of fear and anxiety. I wanted to feel empowered by it, by the fact that I am a survivor, but I don't, not anymore. I used to wear a bracelet that said I was a survivor but I stopped wearing it because I got tired of answering questions about the thing that I would give anything to just forget. It's hard to feel empowered by having survived something that may very well be the thing that kills you, and way before your time. It is hard to live, hard to plan, hard to be optimistic about the future. I am not, on most days. Most days I just wish for something I can't have. I don't know how to live with this anymore. I never did really figure it out, as hard as I thought I tried to.

It's breast cancer awareness month. It's in my face, all day at work, all over the place. Every where I go, a constant reminder.

My friend Nina posted asking people what they would want if they could have just one thing. She got it exactly right. Time.

Every which way but one

In the past two months I have been checked out by my oncologist, her PA, my surgeon - twice, by way of mammogram and ultrasound. I am in the clear until February 3rd 2009. The only thing I haven't done is the MRI. My surgeon told me today that she does not believe that it is necessary at this time (radiology told me to do it in September). And we can revisit the issue in February when I have my mammogram. We had previously decided not to do them at all and she doesn't think it is necessary, but radiology keeps telling me to do it. She says - of course they do - they are radiologists.

I don't know if I feel a lot of comfort by what she said - that it isn't necessary. I mean, am I taking a chance with my life? Probably not but can you ever know for sure? Can I know that the spot that they saw on the mammogram I had two and a half weeks ago was nothing because it did not show up on the ultrasound? Can I have 100% comfort or do I have to live under this cloud of uncertainty? Hanging over me the MRI, the last mammogram. Am I going to let my leave be ruined by this fear? Am I never going to get involved with any man again because of it? Or am going to live the next six months as if I am going to live?

It's been hard to relax during this leave of absence. I keep telling myself that I should be more relaxed, less stressed. It's not work stressing me out. I frankly could care less about that, much to my surprise. But it is what it is. I am the way I am. I feel how I feel. And it's okay.

A little dramatic, don't ya think?

Okay, so maybe my last post was overly dramatic. But it does feel awful and it's true that I don't know what to do and it feels like the prospect of the MRI is going to ruin my time off. But yes, I admit it, that was probably overly dramatic. And to be honest, I am probably not going to do the MRI until January.

Hanging over me

My mammogram was clear. Yes, it was as traumatic as the experience I had in January with the MRI. The only thing that made it less traumatic is that I was able to get a definitive okay after only 3 hours of waiting as opposed to 3 days.

It is a kind of horrifying that I can't describe to you when the technician comes down the hall and says to you - we need more films, the radiologist sees a spot on each breast and can't tell if it is breast tissue. It is further horrifying when she still can't tell from the additional films so they want you to have an ultrasound. And in between all of these trips down the hall and conversations with the radiologist, you wait, and you wait. You wait in a room with other women. I can't bear to wait in that room so I asked if I could please just go somewhere and wait alone.

It is horrible. And then in the end it's fine, but you don't feel relieved for some reason. You ask 10 times, are you sure, are you positive, how do you know, are you sure you can't see it? I have to just tell myself that if the radiologist had any doubts about what she was looking at, she would triple check. But the up and the down and the vagueness and uncertainty make it hard to relax into the "okay." It's Wednesday morning, I've known since 3 p.m. yesterday that it is okay, and I still don't feel okay.

The reason is probably this. So we moved this appointment up from September to get it over with - so that I could go on leave and enjoy it and not be worried about a mammogram in September. That was the plan.

Remember how I said my surgeon and I decided to skip the MRIs because of what happened the last time? It isn't standard protocol and it was so traumatic - in fact it was that MRI experience that resulted in me needed this time off. Remember?

The radiologist wants me to do the MRIs. Now I have a conflict between two doctors.

The reason she says is because she had a hard time telling on the mammogram whether what she was looking at was breast tissue, or whether it was something else and it was hard to tell because my breast tissue is so incredibly dense. When you smash it and look at a 2 dimensional image of it, tissue gets compressed on top of tissue and you can't always tell what is what. The downside if the MRI is that it picks up everything, but presumably could pick up something that a mammogram wouldn't.

Yet my surgeons says it is not standard follow-up. So it's up to me I guess, to decide. If I had known that the radiologist would want me to do it so bad, I could have done it in mid-July and gotten that over with now too. But I wasn't planning to do it because my surgeon said it was okay not to. It is a calculated risk, how much chance am I willing to take with my own life?

The MRI, it has to be timed with my cycle, so it would either be at some point late in August or in September - I have to count the days.

Do you know what that means? That means for a good part of my leave, the fear and anxiety will still be hanging over me. I'm not sure I will be able to enjoy this time off or get the most benefit from it knowing hell is around the corner. I will anticipate it the entire time.

Help - I don't know how to let go of this.

Next week I am calling my surgeon to have her send me to the plastic surgeon - my doctor said she could do a nipple conserving mastectomy on me with implants under the muscle. I know, that seems drastic, but I don't know how much more of my life I can lose to these appointments.

I feel like I am losing my entire leave, the point is being ruined. I won't get another leave like it, and it's ruined.

As good as real and just as bad as the last time

This upcoming mammogram is way too much on my mind.

I can tell because I had a nightmare about it last night - and whenever something is weighing heavily on my mind, I tend to dream about it. It isn't always bad or in the form of a nightmare, but this time it was.

Remember what happened to me in January when they thought I had breast cancer again - right - well, this was just as real and just as scary and just as bad as the last time. Waking up this morning did not feel like a relief - I felt like I did in January when it was real.

In my dream I was at the hospital - they kept telling me that I didn't necessarily have it again but might very soon but they couldn't really predict. I was hysterical. Some how my mother showed up. Now, if you know anything about my childhood and my mother, you know that this is the worst possible person to show up. I was going around the hall outside the room telling the nurses that I was going to kill myself and I needed someone to get my doctor. No one would pay attention to me - they kept telling me she was too busy to talk to me. I kept begging for her and no one would get her and telling them I was going to kill myself and they wouldn't get her for me. They let me leave the hospital in a hospital gown with my shoes. I left the rest of my stuff there.

It was horrible you guys. Horrible.

The thing is folks - that's exactly how I feel - that I would kill myself if it happened again because knowing what I know now, I would rather do that than go through anything like what I went through the last time. I told the psychologist at the cancer center that - that I would kill myself if it happened again. She told me that it now says in my record that I am not to be allowed to leave the hospital in the event it ever happens again.

They let me leave.

I woke up.

Crumbling all around me

It just occurred to me, just now, that I am starting to freak out about my mammogram next Tuesday, July 29th at 12:15 Central time. We moved this mammogram up from September on the theory that I would be able to get the most out of my time off if it wasn't in anticipation of my whole world crumbling all around me again. The anticipation of these appointments is horrible. I keep thinking it has gotten better, but it hasn't. I am freaking out an entire week in advance.

I just try not to think about it. I try. And I think about it anyway. And what I think about is not something I can describe. What I feel is not something I can describe either. I've tried before and it isn't possible.

And when I tried to describe it before, this is what I said: "It's like hanging out with someone, that really means a lot to you. And you know that it's the last time you will hang out with them for a really long time, maybe ever. This might be goodbye, in fact, it probably is. But you don't like the idea of it, or the word even - you find it impossible to say, so you try to ignore that fact while it crowds out everything else until it's the only thing you can think about. The harder you try to ignore it, the more aware of it you are.

This person means so much to you that you count down the time you have left. You count down the days, the hours, right down to the minutes, the whole time anticipating that moment when you have to let go of them. This person means so much to you that you just desperately want to enjoy every second, so you try to, you focus on it. You concentrate on it, the minutes, you hear the seconds ticking even. You are desperate to make it last. You try so hard to make those last days and hours so perfect that you fail to enjoy it at all. Before you know it, it's over.

You've wasted the entire time anticipating the inevitable end. And you've anticipated it so hard that you missed the very thing you most wanted to savor. You beg for just a little more time, just a few more minutes - as if a few more minutes before the end can really mean anything or make any difference. You just don't want it to be over. You want to stop time.

Every second of the days that lead up to one of these appointments is just like this - it's like the last moment you will have with someone, and you know that it's over and you just don't want it to be, but you don't have any control over it, and try as you might to enjoy it, you can't because all you can think about is the inevitable ending. Just try to imagine the very worst possible thing that could happen to you - and how your life will be ripped out from underneath you when it happens - and you know that when it happens nothing will ever be the same again. And imagine you know just exactly when it's going to happen and how much time you have until then. And imagine what living in those moments is like - the impossibility of it."

Living in the anticipation of it is almost unbearable. The feelings, intolerable. And I have nothing to numb them.

My doctor describes it like this - she says it's like walking around with a hatchet hanging right above your head, and you don't know whether or when it's going to drop.

I am trying to live in spite of this. I feel like I have progressed no where.

An almond in a bunch of grapes

I am not sure this is the best comparison, but it's what my surgeon said. When I had breast cancer, it definitely didn't feel like an almond - it felt like a very very large grape. Nevertheless, that's what she said - think of it that way when I look for things. I have lumpy breast tissue, not a lot of fat and very dense. And a breast cancer that didn't feel like breast cancer - so, how the hell am I supposed to know what I am feeling?

Two and a half weeks ago I had an appointment with my oncologist - just a follow-up. I posted about it - it was fine, except that I couldn't get comfortable with the outcome. She said there was nothing there - that the lump that I felt in my left breast, the one I didn't have it in - was a gland and was nothing.

Now, how comfortable would you feel if you had previously had breast cancer and your doctor said, yeah, I feel the lump, but it is nothing? And I trust my doctors - I have good doctors. But does my doctor actually expect me to be satisfied with her guarantee that based on feel alone, the lump is nothing?

I tried, for two and a half weeks to get comfortable with it. But how can you - when you know in the back of your mind that if it is something - you are wasting very valuable time. I just couldn't get comfortable with it.

So I went to my surgeon which is what my onc told me to do. And she said yes, I feel the lumps, they are nothing, I am sure of it. But she did an ultrasound anyway, because I told her I could not function the fear and anxiety were so bad, and indeed, there is nothing there. We looked at my lumpy breast tissue, the ducts, my nipple, my muscle, the little bit of fat.

Now I feel relieved, finally. Don't I? I feel like I should feel more relieved than I do.

She told me to come see her every three months instead of every 6 and she will do a breast exam so that I don't have to. I can relax people - well, except that I have a mammogram on the 29th.

Two celebratory cookies, a brownie and a raspberry bar because we have something to celebrate

My appointment was fine. There is one thing that I am worried about but I am trying to be rational. We feel something on the other side (or at the very least I do, and I think she did) but my doctor says it is a gland. Hmm. I have to keep telling myself that if she had any doubt in her mind, any at all, even a little, we would be checking and double checking and triple checking. I'm not totally comfortable with the fact that we aren't checking, but that's how sure she is that there is nothing there.

Now, what are we celebrating? We are celebrating that I passed the critical "two year" mark without incident and without even knowing it. You see, apparently, when they tell you that it is most likely to come back in the first 2 years - they count that two years from the date of diagnosis not the date of completing treatment. So two years came and went - right at the time that I was dreading my birthday and I didn't even know that I had something to celebrate.

Of course that doesn't mean it won't come back but - well, why can't I just be positive about it?! I passed the first hurdle. Now she says there is a 5-10% chance that it will come back in the next 8 years, and if it doesn't, then I am in the clear - it won't come back. She says there is even less chance of it showing up as a different incident rather than a recurrence. This is all based on the combination of factors, type of cancer, etc. Those aren't bad odds, right? My oncologist says that basically means that it isn't coming back, so I better figure out how to live.

I want to believe her, but I can't seem to. She's so confident about it that it scares me.

So, anyway, I am celebrating with my favorite things from my favorite bakery and you can have some too if you come visit me...Jod...!!

I might as well blog

I figure I might as well post because I am not doing anything else. Although lately I feel like I don't have much to say. I am trying to work, but unsuccessfully. I've mostly been unsuccessful at working for two weeks now. I don't totally know why. A combination of my erratic mood swings, something else I can't post about, this appointment, and other unidentified things. Right now I am listening to my secretary have a shouting match half-way across the office with the facilities guy about which side of the file folder the label should go on and whether files should be done left to right or right to left. Seriously, they are screaming at each other.

I am not feeling too bad about this appointment that I have at 3:45 at the moment - but what I am feeling bad about is my inability to deal with what I went through on a larger scale. I need to figure this out because right now, the terrorists are winning as a friend would say. And she is right, they are. The fear I have about this happening again and what it will mean more or less rules my life. It is ruining my life in my opinion. Most days I feel like this whole experience has ruined my life. I have only moments where I am not overwhelmed by the fear of it and those moments are only when I am with my nephew Ellis. Otherwise, it colors every thought I have, everything I do, my relationships with everyone, my future plans, or lack thereof, everything. And I realized recently that it has ruined my ability or maybe I should just say taken away my desire to ever get involved with another man. Because when it happens again, I would rather just be alone. I don't want to put another person through that. I don't want someone to have to watch me die a miserable, horrible death. And if I know that the odds of it happening to me are double the odds of it happening to someone who has never had it - well, then I feel like I should just be alone. It's just how I feel. It is a kind of suffering and pain that I don't want to put on someone else and I can avoid doing that. It is something that I am incapable of sharing with another person. I don't even really like to mention these appointments, and sometimes I don't, because truly, I would really just rather deal with it alone. I don't want anyone there, I don't want anyone to do anything. I don't think it's a normal reaction to this situation, but it's the way I am.

Of course I have had moments in the aftermath where it felt like perhaps it had changed my life for the better - because I have a deep appreciation for just how easily your life can be changed or taken from you in a split second. But it doesn't last. The knowing what does and doesn't matter in life doesn't last. The living in the moment doesn't last. And you might think that it would be easier after I what I went through, to enjoy life and to really experience it and live it and love every second of it. But it is actually harder, to my surprise. Before I lived in this state of unawareness that we all live in I suppose to some extent, where we don't think about dying young, of course we don't, because why would we? We assume we have this life ahead of us and that our dreams will come true because why wouldn't we think that? For me, I think it about it everyday, about dying, all day, all the time. I think about what will happen and when and who I will be leaving behind and how sad it makes me. I think about what I will never experience and never have and all the regrets that already overwhelm me. I think about how angry I will be to have wasted the precious little time that I did have, yet I can't stop. It is preventing me from living. Because what's the point anyway? But what if I live? What if I don't die, only to find that I wasted the time and all of the opportunities? Right now what I wish is that I could let go of everything I ever wanted in life so that I could stop living in the fear of never experiencing it. That's what I want.

And I know what you are thinking, you could be hit by a bus tomorrow. What's the difference, you don't live in fear of that. And you are right, I could be and no, I don't live in fear of it. It's just that, well, that isn't the same. And I know you don't understand if you haven't been through it, and I don't expect you to. And don't suggest that I try a support group, because I don't want to and I'm not going to. I have a strong aversion to support groups, well, except AA if you call that a support group - which I don't. Because see I don't want to sit around and talk about it all the time. I don't want to think about it all the time, anymore, ever. I am tired of talking about it. I am tired of thinking about it.

The time in between these appointments is better, it's less in my face, it's easier to ignore, I can sometimes even convince myself that it never happened even though every time I take my shirt off I have a reminder. It's just that ignoring it isn't working as well as I would like it to and I think eventually it may stop working all together.

It is quite possible that this doesn't become better, it doesn't get better, or easier, it only becomes different.

I am starting to panic

I am soliciting prayers again.

Hi folks. Bad week again - not work wise so much as mentally and emotionally.

I have a follow-up doctor's appointment with my oncologist on Friday. I've known about this for a while. I thought I was fine about this. Well, this morning, I started to panic. I am totally in panic mode. I almost can't function. I wonder if that is why I have been a mess the past two weeks and just didn't realize it.

Why am I panicking? Remember how the last follow-up went? They thought I might have breast cancer again. See HERE, HERE and HERE.

I wish I could describe to you what kind of hell I am in. Go read the post at the first link - that's the only way I can describe it. It is agonizing, it is terrifying, it is debilitating, I can't live like this. I can't live this way anymore you guys. I can't do it. This is destroying my life. I need some other way to deal with this.

And, here's the thing - this should be a nothing appointment - it is what I call an "in between" appointment. If I am this scared of an appointment that should not be all that scary - then imagine the next one when I have a mammogram. And am I going to do another MRI - which was disastrous the last time? Cause if I am - I have to do that in mid-July. Unfortunately, this next mammogram is scheduled for September 11th. Is the anticipation of it going to ruin my leave of absence? Do I need to move it?

I can't do this anymore. I can't.

I need people to pray for me.

About faith and surviving

I don't know what ever made me think it would be easier this time. It's harder actually and I don't know why. People have always told me that the difficulty would ease with time, but for me it has been the opposite. The anniversary of the day that I was diagnosed with breast cancer is fast approaching. I can't breathe. It is still 8 days away though and I wonder if the next 8 days are going to feel like this. And the days after, if I live through them.

This time of year has become something, well, that I can't describe. To say that I dread it wouldn't be accurate, but I would give anything to just freeze myself in a moment that isn't this one. My birthday is 2 days after the day that I was diagnosed. The day in between, the 16th of May, is a day that is almost intolerable for me. This time of year was always a time of reflecting for me - the night before my birthday was always the time of year that I re-evaluated everything. I left nothing unchecked and for many years, year after year, I would write a suicide note on that day. Now all I can think about is how desperately I want to live and how overwhelming the fear is that I might not get to. A fear that I mostly ignore, but am not always able to.

It is moments like this one where I am confronted with the fact that I never really dealt with anything I went though. I never processed it, I never came to terms with what it means. I have never figured out how to live with it. And while I do have a real appreciation for life, for the fact that it can be taken away from you or permanently changed in an unanticipated tragedy, in a heart beat - a split second, in an otherwise benign moment - while I have an ability to appreciate even the smallest of things that I never used to even notice - trying to live in the aftermath of it, is, well - I can't find the words to tell you about it. The only thing I can say about it - I have said before. It's like this - imagine that you could know the moment when it would all be over - you could anticipate that second when it would all change - and then imagine what it is like to live in the hours and days leading up to that moment - imagine trying to live in the anticipation of it. Every day of my life is like this - trying to live in anticipation of that moment. And what do you do with the time? You try to live it, you try to love every second of it, you try to make the most of every last, little bit of it, you try to be grateful. But you think mostly about what you regret and what you would change and the fact that you don't have the time to. Time. There have been many things that I have wanted, that I have wanted desperately, that I still want. But I would give it all up - I would hand it all over in exchange for one thing. Time, and more of it.

I was thinking this morning about the fact that I am still sitting here when perhaps by all accounts, I shouldn't be. I was thinking about how that came to pass and where to turn in these moments that feel unlivable. I was thinking about faith because I have this faith in a higher power - through AA - that is probably almost unshakable. Almost. But what does that mean? There but for the grace of God go I. It doesn't mean that I won't get breast cancer again. Even God can't make that happen for me. I have come to realize that. I have come to appreciate through my own experience and through the experiences of others, some of whom I have met here through the blog world, that really bad things happen to really amazing people and there are some things even my faith in a higher power can't fix. I don't even pray for God to please let me not get breast cancer again - except for on very rare occasions. What my faith means to me today is simply that whatever I have to go through - whatever it is, no matter what it is - I will walk through it more gracefully than I otherwise would have. It means that in a moment of utter desperation, I may be granted that temporary reprieve - otherwise known as grace. That is all I can really hope for.

I was thinking also about this woman this morning - I don't know her but I posted about her last year. She was dying and I honestly don't know whether she has passed away yet or not because I no longer know the person who told me about her. But I think about her and I pray for her sometimes. What I pray for hasn't changed. I pray for her the same thing that I pray for myself - and that is simply to be unafraid. I pasted that post below because she was on my mind this morning.

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May 16, 2007
The day in between

Today is the day in between. The day in between the day I was diagnosed with breast cancer last year, and my 30th birthday. It is the day after everything changed. The day after nothing made sense anymore. The day after I and my life would never be the same. It is the day I didn't kill myself, even though I had planned to.

It is the day, every year, that I question everything and accept nothing. The day that I wonder how I got here, right here, to this moment and I am always amazed, no matter where I find myself. It is the day that I recount the ways I wish my life were different and that I analyze the ways that my life does not meet my expectations. But unlike other years, I will not forget that I am grateful.

The gratitude though is colored with what I can only describe as doubt and a feeling of unworthiness. That I, of all people, for whom God has performed multiple miracles, did not deserve it. There is this woman - and I don't know her, but a friend told me about her. We share the same name. She is 35 and dying of cancer. She has a family and small children. I pray for her.

This morning I thought, why, God, would you take her away from so many people who love her, when I have no one to leave behind? And though I can't say I know exactly what it would be like to go through what she is going through, to die, as I sit here, living, I feel for her a pain that is almost intolerable. It is ripping my heart out. I have tried to imagine it - in order to prepare myself for the very real possibility that I may one day be sitting where she is sitting. And today, right now, I think I know what that would feel like. It is indescribable.

When I pray for her - I pray for the things that I pray for myself. For God's will above all other things and that she can go on, unafraid - that she has peace, that her children can find some way to understand what there is simply no explanation for, and that she has the strength that I have. Mostly I pray that she is not afraid, because I would be terrified.

If you are reading this, and you know me - so you know my name, please pray for her. I do believe in miracles.
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In my name

A friend called me this morning to ask if I would mind if she walked the Breast Cancer 3 Day walk this fall in my name. Of course I don't mind - it means a lot to me that she would do that. I actually want to walk in it myself. I even wanted to last year, but didn't want to walk it alone (meaning without a friend). Should I walk it with her? She says she wants to walk it in my name even if I walk with her - she's going to have t-shirts made with my name on them to wear every day.

My friendship with this person has been a little bit up and down (just meaning that things have happened that seem to have made us less close than we once were - though when we reconnect from time to time, it doesn't feel like it) - but she's one of those people that no matter whatever happened or happens between us, or whatever we may disagree about or feel differently about - if I needed anything, and I do literally mean anything - I know absolutely for sure, without any question, that she would show up for me. No matter what, no questions asked. In fact, she is the reason I stayed sober through surviving breast cancer. Without her, I am quit sure I would not have.

For some reason though - the thought of doing this walk is daunting. It isn't the fund raising that scares me (you have to raise a certain amount to "enter") - I'm sure that I can raise a lot of money - between AA people, my friends, my family, my colleagues, maybe even strangers who read my blog - I'm positive I could do it and that I could help my friend raise the money she needs also. I've heard from people who have walked it that it was the most amazing thing they have ever done, and one of the most difficult.

I don't know what is stopping me from committing to doing it. It just seems overwhelming or something to train for it. And could I do it? Could I train for it and actually walk 60 miles? I mean, if ever there were a cause or a reason for me to do something like this - this would be the reason. Rarely have I ever let fear stop me from doing things. I think I have mostly been fearless in terms of pursuing what I wanted out of things like my education and my career. And though there were times in the middle of everything I went through when I thought perhaps I wouldn't make it - I survived that with a kind of strength that I have been told is unparalleled. But it was a strength not my own - it was given to me, that was grace.

So why don't I feel strong enough to do this walk, when I know that I have the strength to do literally anything? I want to do it, but I'm scared to.

All packed up, and

It is with mixed feelings of course that I am going back home tomorrow. I need to go home, I haven't been there in a week, but I wish I could stay and absorb more of the wonder of looking out the window with my nephew or playing with an old lotion bottle or a hair curler. Sometimes I wish I could just suspend time.

The mail hasn't been gotten in a week, my cat is alone, I need to make my car payment, go to a meeting (it's been 8 days, but who's counting), figure out what's going on at work - oh right, that place, get back into exercising regularly, do my taxes, make a dentist appointment, meet with a sponsee, back to my daily routine of praying and meditating. It's back to reality and all that comes with it. My reality is not something to complain about, I'm not saying that.

When I had this breast cancer scare last week, it really threw me off, more than ever in the past and more than I expected. I handled it both better and worse than I would have anticipated. It scared me so much that what I really wanted was to take an unpaid leave of absense from my life for a while. I seriously wanted to walk into work and say see you guys later, I need to figure a few things out and I can't do it here. And it's true that I do feel like I need to figure a few things out, but I can't take an unpaid leave and check out for a while. It just isn't a possibility. I will have to figure those things out some other way I suppose. Regardless, I just needed some time. I needed to pause for a moment and step away from my life.

So instead I spent a week at my brother's house in Boston, where I "worked," but it was more of in theory than anything and mostly I just goofed off. Next week I will regret it when I look at how many hours I have to bill to catch back up by the end of the month - but, let's just forget about that for as long as we can. The time that I took was and it wasn't enough. I leave with what I came for, and with unanswered questions, and with even more questions. But I did figure a few things out. Next post.

Oh, and I am also sad.

The story of how I found out I had breast cancer

Several people have asked me how I found out I had breast cancer in the first place - since I was 28, with no known family history and no risk factors. I also happen not to have a gene for it, which I know because I did genetic testing after I found out. I was just that unlucky and unlikely, less than 1%. So, here is the story. It's not that exciting, just a little bit of a caution to all women, that's all.

I'm no authority on breast cancer statistics, although yes, I do know a lot about it, but just to clear up one common misconception, 80% of breast cancer instances are in women who have no known family history and no risk factors. You may think you are less likely to get it if no one in your family has had it, but it isn't true. If you aren't checking yourself, you need to be. No matter how old, or rather, how young you are. I wasn't checking myself, not with any regularity anyway. It can save your life you know. How early you find it can mean the difference between taking chemo drugs and not taking chemo drugs, between losing your fertility as a result of those drugs and keeping it, between it spreading and not spreading, and it can change your long term odds significantly. You need to check yourself.

I had moved to Chicago for a job but hadn't started yet so I went back home for my annual exam because I still had insurance there. My doctor found something that felt like a fluid filled cyst during the exam. Right at 12 o'clock and very high up. Impossible to miss, if you were looking. It wasn't there last year when I had my exam. How could I never have noticed it, even if I wasn't checking every month? It had to be a cyst right? I was 28 and it was huge, squishy and freely mobile. If you know anything about breast cancer, you know that it is never described as soft and squishy and freely mobile. It is described more like a hard pea, and locked in place. So when you are checking yourself, don't only feel for things that are hard. The problem though is that it is hard to distinguish between lumpy breast tissue and other soft lumps. So if ever you are in doubt, don't make any assumptions.

She told me not to worry but just to get it checked again when I get back to Chicago. I panicked. She sent me for an ultrasound. They said it wasn't fluid filled, definitely solid, had to be a fibroid, because I was 28. Just check it again when you get back to Chicago they said, but you don't need to worry. So I started my job, got my insurance all set and made an appointment. Same story - not fluid filled, definitely solid, but it has to be a cyst because I was 28. The doctor said it was unusually large but that it didn't necessarily need to be removed. She recommended waiting for 6 months, checking it again and if it was getting bigger, well, then we would think about removing it. But couldn't it be something other than a fibroid? Shouldn't we check? She said no, that I was only 28.

We went back and forth about it and finally I said, I want to know now that this isn't anything. Why would I wait 6 more months to know that this isn't anything, if you could tell me now? Because you are only 28 she said, you couldn't have breast cancer. It would be extremely unlikley. So I said, well, let's just check then. If you can prove it to me, I want you to prove it to me now, not later. So she gave in eventually after a lot of discussion and did a biopsy and told me not to worry because the chances that it was anything bad were less than 1%. Well, the rest is history right. It came back as breast cancer and the course of my life has been forever altered. She didn't know what to say and I switched doctors. Not only did I have breast cancer, but about as dangerous as it can be in terms of cell growth and spread. The tumor was already 4 cm. In an ideal world you catch it when it is less than 1 cm. You need to catch it a lot earlier than I did. I was lucky that it hadn't spread (at least as far as we can know that). Can you even imagine if I had waited 6 more months, on her recommendation, just because of my age?

Then I sent my all of my biopsy slides and films etc. up to the hospital in my home town for review. Up there I found out that the tumor, based upon the characteristics of it, probably grew to that size in less than a year. I asked the radiologist at this other hospital if it looked like breast cancer on the films. What does it look like? I just wanted to know. Turns out it isn't all that obvious on ultrasounds or mammograms (or MRIs as we just found out) whether something is malignant or benign, but he told me that if they saw the same thing in someone even 10 years older, the doctors would have been terriried. He said that the sole reason the doctors and radiologists told me to wait was because of my age. It's simple, it's just a numbers game, because to them I am just a statistic, an unlikelihood. I also found out that in between the original ultrasound and the one that I had one month later - the tumor had grown measurably. It was extremely fast growing.

I really can't imagine why a doctor would ever tell a woman to wait if there is some kind of lump in her breast. It doesn't make sense to me. Likely or unlikely, it just doesn't make sense. We are talking about life and death here, we are talking about differences that impact your survival.

The bottom line is, you need to check yourself, even if you are only 20, you need to check yourself every month at the same time. And if you find something, don't wait to get it checked out and don't make any assumptions because of your age and your family history. And if your doctor is making assumptions, you need to get a new doctor, period. Just get a new doctor. Don't let them tell you about statistics and your age because it's not going to matter how unlikely it was when you find out later you have it and it's spread all over your body and can no longer be cured.

And now the waiting is over, so, let the celebrating begin

Hi everyone. Everything is okay. I don't have breast cancer again! Thank you God, and thank you to all of you wonderful people who have been checking back and praying, etc.

I had an MRI biopsy (unpleasant) Wednesday and when I had the MRI, one of the two spots had disappeared (which means it was hormone related). So they just biopsied the one spot and I've been waiting since Wednesday morning to find out whether everything is okay. And it is! But that might have been the worst few day wait of my life. It was horrible. But, let's not dwell on that. Because it's over and everything is okay!!!

So now, we celebrate! I started with a little shopping trip that cost me um, only $200, but I've only just started.

And tomorrow I am going to Boston for the week to visit my brother, sister-in-law and nephew, and I'm going to enjoy every last little second of it. There is nothing like playing with my nephew to remind me what being present in the moment is all about.

More later, as I process what I just went through, but for now, a special thank you to my friend Tricia who is a 10 year breast cancer survivor and who inspires me because she was told she only had a 30% chance of living, and to Netta who saved my life the first time around, to my friend Pam who will always be the first person I call if ever there is a risk that I might not stay sober through something, and a very special thank you to someone else, you know who you are, for listening.

I wish I had something more positive to say

I suppose I shouldn't characterize this as bad, so let's say it's neutral at this point. My MRI was fine on the right where I had cancer and questionable on the left where I didn't have cancer. The spot that previously enhanced on the left is not there, but, there are two other suspicious spots showing up on that side that were not on my MRI 11 months ago. How suspicious, I can't really say. They aren't actually described all that suspiciously and if I had never had it before, they would wait 6 months and do another MRI to see if they are still there. I was told so many things yesterday that I don't know what to make of it. They see this all the time and it's nothing. It's possible to have enhancements go away, I have had that happen for example, but these two spots show up very clearly and everything else is quiet on that side.

It could very well be nothing, because MRIs are sensitive and like I mentioned in that last post, doctors don't like to do them for this very reason. Or, it could be something. It's probably more likely nothing, but because I've had breast cancer before, my doctor is going to biopsy both spots to check. Unfortunately, because I've had it, they will biopsy anything they see basically. And because I defied the odds the first time, well, we can't base it on odds alone.

These two spots did not show up on the mammogram or ultrasound that I had 5 months ago, and it can't be felt. I thought that was encouraging. However, my doctor said that it is entirely possible to have breast cancer go undetected by touch, mammogram or ultrasound. That's comforting isn't it ladies? Can we really trust anything to catch this? It seems not.

Anyway, I don't know when I will know anything and I probably won't post again until next week. So, if you could just keep praying, I would be grateful.

Waiting sucks

This basically just sucks. Waiting sucks. Having to work while waiting sucks. It's distracting on the one hand but it sucks. The weekend overall was okay though. I just did what I always do, cleaned, ran errands, did laundry, went to a couple of AA meetings, talked to a couple of friends, worked out, and bought two books on Buddhism and recovery/the AA twelve steps. This has always been interesting to me and made more sense to me than other things in this little spiritual quest I've been on.

I left a message for the physician's assistant this morning - but so far I haven't heard back. But then again, the MRI was at 5:30 p.m. Friday and it's only 10 a.m. here. So, I'm sure it's not been read yet. When my morning conference calls are over, I am going to call my oncologist and my surgeon. Because why not right? Why not call everyone I can. It's going to be okay right? It has to be. I'm resisting the urge to make any more bargains with God about this. I'm trying not to, but all I can think is - if this turns out okay, I'm going to change my life. I am. I am going to change it.

I feel sick to my stomach.

Edited to add: The PA just called. The report is not available but she will keep checking and call me when she gets it. She thinks she can have it by the end of the day. If she doesn't, she will see if she can get a preliminary report but she will call me this afternoon either way. I love this woman. She deserves some kind of award for being the best medical professional on the planet. I seriously wish she knew how awesome she is. I wish I could tell her. Seriously - she's amazing. And I did start shaking when the phone rang - I recognize her number - we've talked so many times. I am surprised I haven't just saved it in my cell phone. More later...

Edited again: Should I be worried that it's 12:16 and she hasn't called? Probably not. She said she could get it by the END of today. End, that means 5, not now. She has other things to do than check my records every 5 minutes. I'm so unproductive. Why am I even here at work? (Because I have two conference calls). Wouldn't I rather be at home waiting? Yes. I would. But I am trying to just be as normal as possible. I came back to work a week and a half after I was diagnosed and then proceed to work 50 hours per week through cancer treatment. The reason why is a story in itself, but I suppose it can only be explained one way - I am a freak. I only need to bill 10.4 hours by the end of this month to stay on target for the minimum requirement, and I have 4 days to do it. So it's okay that I'm not productive. And, why am I talking about billable hours at a time like this? Exactly. Who the hell cares.

Why the MRIs are so upsetting, well, one reason

I've never told most people this. Only a few people know. It makes me so angry to talk about it, that I don't talk about it. First let me say that when I was diagnosed with breast cancer - it was more than a shock, even to the doctors. Because I was 28, with no family history and not a single risk factor. I'll post that story too, sometime soon - because it could save some one's life.

So, the MRIs. When I was diagnosed, I had a breast MRI - to get another picture/different picture - something for comparison later, and to look for anything else that might be cancer. The problem with breast MRIs is that MRIs are extremely sensitive and pick up all kinds of things that are nothing. They pick up lymph nodes and hormonal enhancements and you have to time it just right in your cycle - it has to be between days 5 and 8, otherwise, you are going to get all kinds of things that show up. Some doctors won't do breast MRIs as a breast cancer screening tool because of this. Other doctors will because mammograms are not as good on young women because young women tend to have dense breast tissue. I happen to have very dense breast tissue. So the first MRI was at the very beginning. Yup - tumor was most definitely there. The fist MRI was done on day 21 of my cycle because it didn't make sense to wait.

Then I started taking chemo drugs shortly thereafter. I did the chemo first, before surgery, with the hope of shrinking the tumor and losing less breast tissue. I did 8 rounds of chemo but I had the follow-up MRI the day of the 8th treatment. Amazingly - the tumor was gone. GONE. 7 chemo treatments and it was gone. What showed up was some residual enhancement in the area where the tumor was. This was good news because chemo drugs work, but they don't usually work this well, only less than 30% of the time does someone have what they call a "complete" response to chemo. I had the best possible outcome that one can have to breast cancer treatment. Even more amazing was the fact that the tumor I had - was 4cm. It was huge. It was gone.

The radiologist called me after that 2nd MRI to tell me that the tumor was gone. And oh by the way she says, that nodule on the left (note that the tumor was in my right breast) - it's still there and it's the same size, so that's good. Wait what? The what on my left side? There's a what on the left side? What are you talking about - no one told me that something showed up on the left side? NO ONE BOTHERED TO CALL ME AND TELL ME THAT MY FIRST MRI SHOWED SOMETHING ON THE OTHER SIDE. WHY THE FUCK DIDN'T ANYONE TELL ME THAT MY FIRST MRI SHOWED SOMETHING ON THE OTHER SIDE? No one could answer that question. I promptly started freaking out. My surgeon blamed the radiologist, the radiologist blamed the surgeon. The head of the breast clinic eventually admitted that yes, I should have in fact been told, and yes, it was in fact a mistake that I hadn't been. A mistake.

It took me quite sometime to get that man on the phone and to get him to admit they had made a mistake. My surgeon said it was so tiny and so unconcerning that it probably just slipped by because no one thought anything of it. It just slipped by. And, she said, the fact that it showed up the second time was good news - probably a lymph node or a hormonal enhancement. It could plausibly have been hormonal on the first MRI - because the timing during my cycle was bad. But for the 2nd MRI - I had no hormones, I had no period, I was in menopause from the chemo drugs. But regardless she said - it's still there so it isn't cancer, because if it was, it would be gone because the tumor is gone. So don't worry. Right, okay. I then had another radiologist tell me that she wasn't sure she really could see it on the 2nd MRI - so was it or wasn't it there? And if it wasn't there on the 2nd MRI, what does that mean? That it wasn't there because it was cancer and the chemo got it, or it wasn't there because it had been hormonal? We will never know.

My point - in all the arguing that I did with my doctors and the hospital - was simply that we will never know. We will never know for certain whether I had it also on the other side and by not telling me BEFORE I took any chemo drugs, they took away all my options to know. If they had told me, we could have biopsied it. We could have done a lumpectomy over there and checked the area. We could have checked. Now granted my doctor might not have wanted to go digging around over there if she thought it was nothing (like I said, they don't like these MRIs for this very reason - you go digging for things that are nothing) - BUT THE POINT IS, THEY TOOK AWAY MY CHOICES WHEN THOSE STUPID MOTHERFUCKERS DIDN'T BOTHER TO TELL ME. By the time I knew that there had been something on the other side, it was too late. We couldn't even take out a chunk of tissue at that point and check it - because the chemo worked so well, that when they took out the breast tissue where the tumor had been - they didn't find a single cancer cell in it.

Why does this matter so much? You might say - well, if it was cancer, it's gone. It matters because they tell you that you have to do radiation because radiation significantly reduces the risk of recurrence. I did radiation on the right where we knew I had it. But I didn't do it on the left because we (they) assume it was nothing. So that means if I did have it on the left, then the odds of it coming back are much higher because I didn't have surgery over there or radiation. I tried desperately to get out of doing radiation - I tried everything to get out of it - everything. And in the end I did it because my doctor said to me - they type of cancer you had is as dangerous and deadly as it can be - so you should do everything you can, because why in the world would you give it a chance to come back and spread the second time?

Right. Uh huh. Good point. And what about the left side and the fact that we don't know if I had cancer there? What if it comes back, right there, and it spreads? What if? Yes, it could be a lymph node. No, it probably wasn't cancer. But the point is, we'll never know.

I had a third MRI in March of last year. The nodule wasn't there.

Part of what we are looking for on the MRI is that nodule or lymph node or whatever it was. And I'm just scared because we did everything we could on the right, but not on the left. All because of a mistake - a little something that just slipped by. But it's the kind of mistake that can mean the difference between life and death. Because seriously, what if I had it there and I get it again and it spreads before we catch it? I don't think I'll ever get comfortable with what we don't know about the left side. I will always worry, because we don't know. It's an uncertainty that I'm uncomfortable with.

And I'm still really fucking angry about it because they took my choices away from me and now I have to live with the uncertainty. I'm sure that if this hadn't happened, these MRIs would still be stressful - I'm sure of that. But what happened makes it worse - it makes the whole thing worse.

Doing okay

So I'm alternating between okay and not okay. Mostly I'm okay though. This morning I got up, worked out, went to an AA meeting, had coffee with my sponsor and two other women, and then went shopping. The meditation CD is going to have to wait for tomorrow because parking was a nightmare. Then I came home, had lunch, updated my Google reader with all the new blogs I have to read. Now I just need to update my blog with new links. I was trying to upload a picture of my puzzle, but it doesn't seem to be working for some reason - the upload isn't working. I'll try later. I might go to Target and waste money. I really want a new vacuum. The thought of a new vacuum excites me. Kind of pathetic. When this is over and everything is okay, I might buy an all new wardrobe. Just for fun. The AA meeting was outstanding actually. An 11th step meeting - all about spirituality and it was really really good. I was glad I went. I ran into this women there that I really like that I hadn't seen in a while. She said something that really helped me when I told her what was going on.

Mostly I've been distracting myself. Sometimes when I go through this - I think I need to find a better way to deal with it, because it's exhausting. Other times, I think I should just cut myself some slack and give myself a break. Maybe I am dealing with it pretty well, and in any case, the best way that I can.

There is a reason why I feel so upset about these MRIs, besides the obvious. I'll post the story later - tomorrow probably. It's going to make me seething mad to talk about it. So I don't talk about it, but I guess I should. For now, let's just say that not every last little part of me surviving breast cancer went smoothly - mostly it did - I basically survived breast cancer like nothing happened - but one thing did happen that ended with the head of the breast center calling me to apologize and me trying to figure out some way to sue the hospital and the doctors. And the result of what happened is that I feel a thousand times more upset about these MRIs than I probably otherwise would have. Can I claim emotional distress as my damages? Because that's the only damage I have from what happened, so far anyway.

So - before I work myself into a fit over this thing that happened (which may arguably be no big deal, but the point is, we will never know), I'll just leave it there for the moment.

More later...

And now we wait

Thank you for continuing to stop by everyone - I appreciate it immensely. Lots of people have stopped by again today and it's nice to not feel so alone over here. I've never really had support through anything I've been through - I've mostly just dealt with things alone. Even through breast cancer treatment I was basically alone. My tendency is to push everyone away when I have something to deal with and shut everyone out. I have this everyone go away and just leave me alone type reaction to things. And I always debate - do I mention the appointment to anyone - because if I do, then they are going to ask how it went - or do I keep it a secret and just deal with it, whatever it is? The fear of course - what if it isn't okay and then I have to tell all these people that - and I don't know how to deal with other peoples' reactions. I just don't know how to act. So, let's just hope it's okay and that I have only good news. I am glad that I mentioned it. It's not that I've never wanted support from people, it's just that I've never had it. I think I just might have the most unsupportive mother on the planet.

It takes 3-5 days for the written report - but I don't care about seeing the report - I just need someone to call me. Of course the technician can't tell me anything - so I know nothing at this point. Sorry - I wish I had news, but I don't. The appointment itself was fine though - the MRI isn't the most pleasant because of the contrast that they inject into your body, and I'm tired of needles and IVs. But it was okay. I just got home from it.

Now we just wait. At least when I have mammograms they read them while you wait right there. I have a radiologist that I request and she even takes me in back and goes over the films with me. But for this, we just have to wait. Sometimes a radiologist calls, sometimes my doctor. Sigh. I have a plan (of course I do).

First thing Monday morning I am going to call my oncologist's PA. My onc didn't order the MRI, my surgeon did, but her PA is the most responsive person I've ever met. Seriously - she is amazing. I wrote a post about her once. And I know that I can count on her to get those results ASAP and call me immediately. I'm also going to call my friend who is a resident in the rad onc unit - because she will also call me the second she can get her hands on it. Between one of the two of them - I can probably get my hands on it on Monday. It's good to be connected when it comes to this kind of thing.

Monday seems like a long way away doesn't it? In the mean time, I am going to try to just relax and enjoy the weekend. Because why not right? Amazingly, I don't even have to work this weekend, which is great, given the insanity going on there. And I am going to buy myself a new meditation CD tomorrow, work-out, drink tea, and do a puzzle. I love jig-saw puzzles. I can sit at the table for 10 hours straight and work on one.

Keep sending good thoughts and I will post when I know something! And when everything turns out fine, what should I do to celebrate (besides drink, since I don't!)? Plan a trip to go visit my brother, sister-in-law and nephew maybe?

*Edited to add: I spoke too soon. Now that I've been home for a little while, I'm starting to freak out. I really really want this to be okay. And I really want to enjoy the weekend. But I just don't think I can until I know. Ugh.