I Have No Idea How To Title This. Random?

So I am thinking about indulging myself with another glass of beer. Mmmm…sounds so good, so normal. But I am resisting, for now, and drinking peppermint tea…not quite the same.

I am slowly finding my way back to being a warrior. It helped today that I felt good. Again, I am not going to get into the nitty gritty of the side effects, it’s enough for you to know that my “good” days are less and less each time…

Not that I’m making excuses, but you try a 21 day cycle in which you only feel real good on only 6 of those days.

I remember a while back I met with a therapist…as part of my cancer treatments LVH provided me with a therapist. I met with her a few times but that last time I saw her I left feeling pissed off. I met with her at some point between my surgery and the start of chemo…back when I was still in shock over my diagnosis, still scared of what came “next” and still so afraid I would die. I remember just sitting there crying and saying “I don’t know what to do”. And she suggested that maybe I needed to swallow an anti-depressant daily. That’s when I got pissed off and left.

An anti-depressant? Me? No thanks. Yet I have no shame in admitting I need an anti-anxiety to help me shut off my mind at night so I can sleep, coupled with 2 Tyl PM. I have no shame in admitting that I sometimes take that anti-anxiety during the day too…mostly so I can again shut off my mind so I can nap. I have no shame in admitting that sometimes I take a less than conventional approach to keeping my nausea at bay…none. No shame. Whatever works.

And two days ago I probably could have benefited from an anti-depressant. Today? Not so much. So I can’t help but wonder…no, that’s wrong, I can’t help but be sure that a lot of my emotional instability is directly related to my chemo. A little talked about side effect. This is not an excuse, it is a fact. At least, for me it is a fact.

But in less than one month I will be done chemo. Done. Hopefully forever. Did you know 30% of women with breast cancer have a reoccurrence? Just something for you to sleep on…

Trust me, I don’t want to be the self pitying person that I sometimes am. I want to go back to the Leah that laughed a lot, that smiled a lot. The Leah that lived life on the edge of a mountain without fear of falling off. I want to be the Leah that got a rush of adrenaline from pushing herself to the limits. I want to live that life again.

Huh….

Well…I suppose I could do that right now. Seriously. What a thought this is that just came to me. I could strap on my harness, hang off the side of cancerland and have NO fear; because when I look down what I see below me is you. My support team. My cheerleaders. You won’t let me fall. You won’t let me get hurt. You checked my knots, my harness and the ropes. You’ve got my back. And if I get scared, well then, I just blow my whistle and you will come help me.

I have you. Thank God I have you. I need you. I love you. I thank you. I promise you this: I will make every effort to bring myself back to the Leah you know and love. With your help and guidance and tough love I can do it.

Pity party over. Warrior Princess on.

Getting Over Myself

I can’t stop thinking about that email I got. The one that told me to get over myself, get a grip and do as told. It’s hard to do this. I know I have been feeling down lately, and I do have good reason for it. I don’t share all my thoughts in this blog, there are some things I keep to myself, but trust me when I say what I am going thru is harder than I thought it would be. It’s harder then you can even imagine.

That said, I do need to get over myself. I am going to try to regain the warrior spirit that I once had. Baby steps.

I started today by going out in public wearing a bball hat that says “Fight Like A Girl”. That doesn’t sound like much but for me it was huge. I don’t go out wearing bball hats. I wear scarves. Or (rarely) a wig. What I said before is true; I avoid eye contact with strangers. I do. I don’t want to see their expression when they look at me. I walk with my head down. So today, instead of just walking around “looking” like a cancer patient with the scarf on my head, I advertised it. My hat said “here I am, battling cancer!” And I looked everyone in the eye. I smiled at them even.

Like I said…baby steps. That was my step for the day.

And it wasn’t easy.

But I did it.

And it lifted my spirits a little. Made me feel a bit more human.

But not as human as the 8oz of beer I just treated myself to!

A Kick In The Ass

I guess everyone needs a good kick in the ass once in a while. Here was the one I needed, copied from an email I recently recieved:

 

"I know you were just "rambling", but how about you get this taken care of the way the professionals tell you to so that you can enjoy MANY more Thanksgivings, birthdays and Christmases instead of just focusing on the ones this year? I know you're sick and tired of being sick and tired. I do. But you can't win by fighting half a battle. How do you say it? Put on your Big Girl pants (or bra) and just get it done. This may not be worth anything other than my 2 cents."

Doesn't matter who sent it, what matters is I needed to hear it. Thank you.

Radiation Ramblings

I am in such a state of anxiety regarding radiation that it kept me up late last night as I tried to work thru my thoughts. There are many reasons why I don’t want to do it and I think the main one is that I just want to be done. Done done done done done. No more. No thanks. Move along…

There is the issue of having to put off my exchange over surgery. That’s a big issue to me. The expanders are not comfy. They are like Tupperware sticking out of my chest. Sometimes it’s hard to get comfortable in bed. Sometimes they make it hard to hug someone tightly. They don’t hurt anymore per se, but I am definitely aware that they are there. And I hate them and would like to get rid of them. Sooner rather than later.

A woman I met online sent me some photos of her radiated skin. Ouch. Oh. My. God. Ouch. Now I know her experience could be different from mine but seriously, ouch. So this has now become an issue. And I know she didn’t send me the pics to scare me, she sent them because I asked her to tell me the truth. I am thankful she did. I keep saying (because I keep being told) that rads will be a walk in the park after all I have already been thru. I beg to differ…and I haven’t even started rads yet.

When I spoke to the other rad onc he assured me that waiting a bit less than a month from the end of chemo to start rads would be ok, so that I could be done by Christmas, per my request. But I can’t get out of my head something else he said “by Christmas you will be in pain. And your skin will be burnt.”

But in hindsight…

I now have an appt with the original rad onc, Dr. M, on Nov. 2. Seems so far away. And here is what I am going to ask her…instead of being done by Christmas, can I wait till after Christmas to start? Is there a huge problem by waiting 60 days instead of 30?

I need time to heal. My body needs time to heal. Mentally and emotionally I need time to heal. My soul needs time to heal. I am exhausted, in every sense of the word.

Since April 20 I have been living on a rollercoaster of emotional and physical pain. I have needed drugs to quiet my thoughts so I can sleep. I have needed drugs to ease the physical pain I have experienced. I have needed drugs just to get thru the day without killing someone. I cry when I think about having to go back in for two more rounds of chemo.

I just need a break. And I think a good time to do that is Oct 23 to Dec 26, 2012. Allow me to enjoy Thanksgiving, my birthday, Michelle’s birthday, Christmas and the 3 other family members birthdays while feeling good…at least physically feeling good..my emotions and my soul will need more than 60 days to heal.

Allow me to rest. To put my energy into the holiday and birthday season without the added stress of daily radiation treatments, fatigue and skin issues. Allow me to host a holiday dinner for 15+ people. Allow me to celebrate the birthdays of those I love.

I need a break.

But I believe that my request for a 60 day break will be denied. I am hoping at the least that it can wait until after my birthday.

 

NED!

No Evidence of Disease. This little jargon is one all cancer patients aspire to. NED.

Last Saturday morning I woke up, opened my eyes, put on my glasses and looked around. And the room looked funny….blurry…so I wipe the sleep out of my eyes and try again. Still blurry. I close my left eye and everything looks fine. I close my right eye and…blurry. Hmmm….

I was prepared for eye problems, vision changes even before I began chemo. Remember? I even went out and bought new glasses in case my eyes became too dry to wear my contacts. So I took out the info I received regarding TCH to find which of the three were to blame. It’s the T. And the C. By the end of the day the blurriness caused a throbbing headache.

But, like a good cancer patient when I went to the infusion center on Tuesday morning I informed my nurse of my blurry vision. And she called Dr. Sh who sent over his nurse. I passed her eye exam (it was kinda like the one you get at a DUI checkpoint) and she informed me that Dr. Sh was ordering a CAT Scan of my brain. Just to be sure no nasty little HER2+++ cell had wormed its way up there. He also wanted me to go to my eye doctor and have him take a look.

But first things first…why go to the eye doctor if I have cancer in my brain? So on Thursday I went in for the brain scan. Easy procedure compared to everything else I have done lately. And guess what friends? NED IN THE BRAIN! NED NED NED NED NED!!!!!!!!

NED. Since being told this wonderful news I keep thinking NED. It’s safe to say I am NED in the breasts. There was no cancer in the left breast, a small tumor and some DCIS in the right breast….and since  I no longer have breasts I think it’s safe to assume that I am NED in the breasts. Only one lymph node was removed and that lymph node had a 0.35mm micromets of cancer in it…so while I can’t say with 100% assurance, I think it’s safe to say I am NED in the lymph nodes too.

NED. If I were to have another child and that child was a boy I would name him Ned. What a beautiful sound.

However, if I am NED everywhere why am I still undergoing treatments? Why am I planning on putting myself thru 2 more rounds of chemo and why am I agreeable to radiation?

Because I don’t want to someday say “Oh shit…I should have…”

But (again in a whiney voice) I don’t want to do it.

 

You Almost Got The Dirty Truth

You almost got the dirty truth. You almost got the “bad” and the very very “ugly”. I almost clicked on “publish”, and then at the last moment I changed my mind. I didn’t even save it as a reminder to myself, or as something to publish another time.

I had an “oh woe is me” week. The chemo hit me hard physically and emotionally. I was beaten and drained and decided to share with you all the ugly side effects. And then didn’t. I wrote it on Sun and Mon but kept waiting to publish it, and then ultimately chose to delete it.

And today I feel better. Well, chemo mouth still sucks and boy oh boy do I love to complain about that. But other than that I am feeling quite human. As a friend of mine said: you start your first chemo feeling 100% but each time you sit in that chair the percentage decreases….so I would guess this last chair time I was at about 65% when I sat down. I long for the days of 100% but am getting used to functioning at less.

Yet my inner toddler still cries, wants to cuddle up on the couch between my parents and let them rub my sweaty forehead.  My inner toddler still wipes her snotty nose on the back of her hand…actually….my adult me does that too as the Herceptin makes my nose run and run and run and I am too damn young to stick a tissue up my sleeve….My inner child needs to be parented. And that is something another friend just told me: it’s time to parent myself. I’m not too good at that.

I just read a small article about Breast Cancer and it said in it that living with BC is like having a big white elephant trailing along behind you…no matter where you go or what you do that stupid elephant is there and sometimes you need to just say to it “hey elephant….I’m gonna go hang out with my husband now and you just can’t come with me. Stay here and I will see you later.”

It’s true ya know. Think I will name that beast Ellie. She is distracting and sometimes I can’t meet the eyes of strangers because I know if I do I will see their thoughts floating above them like a cartoon bubble…”oh, look at that poor lady in the head scarf walking around with that elephant..Better her then me; I’ll give her a nice sympathetic smile…”

So today I will run some errands and leave Elllie behind, she can keep an eye on the cats. I will look all strangers in the eye without fear of what they are thinking. I will wipe my snotty nose on a tissue. I will put on my big girl bra and get over myself for the day. Just today. I will look no further than today. Tomorrow could be completely different, but I doubt it. I need to stop my incessant worrying and just live in this moment. Enjoy the cool weather, enjoy my family, enjoy myself without the added weight of Ellie. Ellie is a bitch and I am going to do my best to leave her behind at every moment that I can.

4 Down, 2 To Go.

Is it over yet? Oh no. I have two more to go. I know that sounds good, only 2 more, that means four have been done, but still…..two more. Ugh…I need to do this two more times. Two more. Yuk.

I wish that at the very least I could know what to expect each time, but I don’t. It’s different. So it’s always a mystery. Remember I mentioned before that the effects are cumulative…not as in worse each time, just longer each time. Well….that’s true. At least, for me it is. Usually after an infusion I am feeling good till Wed. PM, maybe Thurs. AM. But not so this time…this time by Tues night the fatigue had set in….

….and that wouldn’t have been so bad except that Michelle was home. And I hate to appear sick when Michelle is around. Or tired. Or anything less then 100%. So perhaps when this is all over I can start a new career as an actress as I feel like I did a pretty good job of hiding just how tired I was from her. At least, on Tues I did. But I had to drag my ass out of bed on Wed Thurs and Fri morning just to appear “normal” to her. And I know I could have stayed in bed, Alan could have taken control. But I just can’t help it. I want her to see me feeling good, not feeling bad. But who am I kidding?? She isn’t stupid. She knows I feel horrid. And she says to me “mommy, I hate this cancer crap. It is hell.” And I am too tired to reprimand her about her language so instead I just say “me too.”

I was very afraid of how these past few days would go with me feeling like a dead person and Michelle being home (over the summer she stayed with my folks during the “bad” days) but it went ok. Thanks of course to my husband and my mom who just step up and take over. And I can make it thru if all I have to do is sit on the couch and watch SpongeBob. And I only have to do this twice more, right?

But lately my mind has been on an old friend. We met when I was about 25 and even tho she was a good 20 years older than me we were friends. We had books and movies in common. We enjoyed dinner, drinks and dancing. We could spend hours together doing nothing and just having fun. But I cut her out of my life after Michelle was born. I didn’t regret it then, and I don’t regret it now. The circumstances aren’t important now. It was what it was and cutting her out of my life back then was what I needed to do for me. For my sanity. There are people in this world who I believe aren’t meant to be there with you forever. You serve your purpose to each other and then move on. Which is what she and I did.

I found out recently that she died. In hospice. Of breast cancer. Do I wish I could have been there for her? Yes. Do I think she might just be up in heaven cheering me on? Yes. I don’t know the circumstances of her cancer, of her death. We didn’t have friends in common that I can ask. All I know is she died. Of breast cancer. Like millions of other people. And knowing that fills me with sadness. I hope she fought bravely. I hope she was surrounded by love and light. I hope she knows that I always loved her and never thought badly of her.

Now I know someone who died of breast cancer. And that sucks. I hope all of you who read this never think of me that way. The friend who died of breast cancer.

 

 

The Second Opinion.

The other day I got a second opinion regarding radiation therapy. I spoke with another radiation oncologist who agrees with the first radiation oncologist, Dr. M. I wasn’t happy with what he said. And I suppose I could go off and find a third, fourth, fifth opinion until I find a radiation onc who would agree with me.

And to agree with me the rad onc would have to say that I don’t need rads.

But nope, he agrees that I need rads to the remaining lymph nodes under my right arm, the lymph nodes above my clavicle on the right side and my entire right chest wall. Again I was told that if I had a total node dissection of my remaining axilla nodes and none of them show cancer then perhaps they would change their minds about rads. But again, I am not willing to do that.

And again I was told that because of my young age and the aggressiveness of HER2+++ breast cancer having radiation would help increase my overall chances of a progression free life. And that is a good thing, of course. I sure would like to leave cancerland behind me with no regrets and live a progression free life, who wouldn’t?

But (and I say this in a whiney voice) I don’t want to do it. I really don’t. Please don’t make me. I have had enough. Mentally I am broken, physically I am broken. Don’t break me anymore. I’m begging.

I realize the side effects of rads will be nothing in comparison to recovering from surgery, will be nothing compared to the side effects of chemo. But still, they will be something. And I don’t want them. I don’t want to burn, I don’t want my throat to hurt. I don’t want to take the risk that my expander could fail. I don’t want to be lopsided once my exchange surgery is done because the skin on my right side has been compromised.

I don’t want to do it. I really don’t.

And then I am told that there is usually a month wait between the last chemo and the first rads. A month.  Chemo is set to end on Oct 23, so a month later will be Nov 23. So Happy Thanksgiving and Merry F@#$%*& Christmas. Oh yeah…and don’t forget Happy 40^th Birthday. Damn.

You see, rads is daily. Mon thru Fri for like 28 to 33 “zaps”. Except weekend and holidays, because apparently cancer doesn’t spread on weekends and holidays. So even if I started on Nov 23 I would not be done by Christmas because of those dumb weekends and holidays.

So I begged for an earlier start date. Wouldn’t 2 weeks wait be enough? Can I please oh please be done by Christmas. He said Ok…maybe 2.5 weeks would be ok. So of course I pushed it a bit and asked if I could be done by my 40^th Brithday. Nope.

So now I need to go back to see Dr. M and get this shit scheduled. And I hope to God that I can deal with it.

But right now I need to put it out of my mind. I need to turn my energy towards positive thoughts to get me thru chemo tomorrow. I am feeling weak today. I need your prayers.

The New Normal

Sometimes, usually at night when I am sitting on my bed reading before I go to sleep, I feel like this is all a bad dream. Seriously. It’s not like I was ever feeling sick. Ever. I still don’t feel sick. Well, I feel sick after chemo of course, but the only time I feel sick is when the medicine that is supposed to make me well makes me feel sick. Does that make sense? I wonder if this would be easier to deal with if I had least felt sick before the diagnosis. Felt something. Even a lump. I felt nothing.

Nothing has ever been felt. No lump. No sickness. No nothing. I have just always felt fine. So I guess I don’t have cancer. I had cancer, it was found before it made me feel sick, and for that I am very grateful.

And yet as I travel down this road in cancerland I still can’t believe I am here. I still can’t believe this is happening. To me. Not that I would want it to happen to you…I just can’t believe it’s happening to me.

Because I still am living a normal life. Or at least a new normal. I still cook, clean, shop, spend time with family and friends. Now I just have added a few new “normal” things. Herceptin infusion every Tues. Blood work every third Mon. Chemo every third Tues. Neulasta shot every third Wed. An occasional MUGA scan and MD appt. thrown in. Planning for radiation, exchange surgery.  And I have removed a few “normal” things. Kayaking. Rock climbing. Swimming.

I didn’t think I would survive the summer living this new normal life. But I did. Thankfully. And I suppose if I could survive the summer then I can also survive the fall. And winter. And next spring. And then next summer too. Or at least half the summer anyways. Because if things go according to my plans by mid July 2013 all this stuff will be over and I can walk out of cancerland and back into the real world.

However, things certainly don’t always go according to my plans….