5 Years Later.

Here I am. 5 years later.

Still alive.

Did you have more faith in this moment than I did?

It felt good to end this blog after radiation was complete, but the end of the blog was not the end of my walk in cancerland.

So lets catch up, shall we?

About 5 months after radiation was over I went back under the knife to have my implants…implanted. That’s all I really have to say about that.

In June 2013 I had my last Herceptin infusion. It was bittersweet as the Herceptin didn’t affect me like chemo did. Herceptin caused me to feel kind of flu-like for about 24 hours and made my nose run all the time but other than that I felt fine. Going in every three weeks for my infusion made me feel safe. I was surrounded by a group of wonderful nurses who showed me great care and concern. The Herceptin was specifically designed to target my particular type of breast cancer so therefore I felt like it was saving my life. I have asked for boosters multiple times since that last dose 3.5 years ago but thus far no one has agreed to give me that booster. I guess Herceptin boosters don’t exist.

Hmmmm…talking about that leads me to this.

Yes, 5 years ago today I was diagnosed with breast cancer. Everyone says the 5 year mark is the pivotal moment. If you make it that long without recurrence your chances of recurrence decrease significantly. So I have made it 5 years from my diagnosis.

But only 3.5 years since my last active treatment.  (And I won’t even go into the fact that I still pop a pill daily to treat my cancer. I mean, I won’t go into it yet)

But 5 years from diagnosis is the standard norm. I don’t agree with it tho. In my mind I will reach 5 years in June 2018.

But today I have lived 5 years past a breast cancer diagnosis. There is no denying that. And I am so thankful.

Anyway…back to my health…

In Jan 2015 I had a partial hysterectomy (I still have my ovaries). This surgery wasn’t really cancer related, it was more like post treatment menstrual problems related…you don’t really want to hear about that.

Just about every part of me that could be scanned has been scanned. It is a fact that after you have cancer and have a medical issue that can’t easily be explained the first thing any doctor does is scan you to rule out cancer. In my case, cancer has been ruled out time and time again. Dare I say that getting old sucks? No. I won’t say it. The alternative is to scary.

In June 2016 my amazing, kind and wonderful Dr Shah (my chemo doc) left LVHN to advance his career and while I miss him terribly I am now being followed by the just as wonderful Dr Scialla. I had my first appointment with him in Jan 2017 and immediately felt just as safe in his care as I did in Dr Shah’s. He and I talked extensively about this little pill I pop daily. Tamoxifen. Tamoxifen is used for women whose breast cancer overexpresses Estrogen. My cancer overexpressed estrogen by a small amount, 5% I believe. There is research going on right now that taking Tamoxifen for 10 years may be better than the current standard of 5 years. I will reach the five year Tamoxifen mark in  Feb 2018. I do not want to stop taking this pill, even tho, as I understand it, my chances of survival are just as good stopping it as taking it. As a matter of fact, there is a blood test to check it efficiency. I have refused to take that blood test. It is psychological, I FEEL SAFE taking this pill.  I don’t have horrible side effects and I think that like Herceptin, it is saving my life.

Plus, when I stop taking it I will need to have my ovaries removed. So even tho that damn Estrogen tried to kill me, I still want to keep my ovaries. At this point, Dr Scialla has agreed that I may stay on it for a total of ten years unless I change my mind.

Tamoxifen=treatment.

And I am healthy.

I am a survivor.

Of many things.

I survived being diagnosed with cancer. I survived 3 surgeries. I survived chemo. I survived radiation. I survived Herceptin. I survived my sleep last night. I survived my drive home from work yesterday. I survived 5^th grade math.  I survived some creepy guy in downtown Easton asking me for a hug the other week.

I don’t want a pat on the back or a high five for “fighting like a girl”, for “beating cancer”, for being a “survivor”. Today I am asking you to think about (pray for) those who will lose their “battle” with cancer, not because they didn’t “fight” hard enough, but because cancer is relentless. Because “winning the battle” is all about luck, not about how hard you fought. I am not (was not) brave or strong, I did what I had to do so I wouldn’t die. And so many people are still doing that, knowing ultimately they won’t “win”, but trying to increase their chances, to live longer, to have just one more good day. These people are the real hero’s, the survivors, the fighters, warriors, or whatever word you choose to use.

I was unlucky.

And then I was lucky.

I survived. With grace, dignity and sarcasm. I survive now, each day, with grace, dignity and sarcasm.

I am a better person because of my walk in cancerland. More cynical perhaps, but overall I am a better person.

Thank you my friend, for all your support.

This will, hopefully, be my last post.

Remember my first post? Here is the first few lines. The only thing that has changed is my age.

Today:
I am 44
I am a daughter
I am a sister
I am a wife
I am a mother
I am a friend
I am a nurse
I am a hiker
I am a kayaker

But let me add:
I am alive
I am healthy

Moving On

So…the “hard” stuff is done.

I have gotten the dreaded “C” word diagnosis.

I have undergone a bilateral mastectomy.

I have undergone 6 chemo infusions.

I have gone to the radiation therapy department 34 times, for a total of 78 “zaps”.

All in the past 9 months. During that time I have dealt with a myriad of side effects. Both emotional and physical. I have watched all my hair fall out. I have watched my muscle tone waste away. I have watched my body drop 15 pounds. I have looked in the mirror and not known my own reflection. I have watched my skin turn red and now I am watching it peel. I have watched those people I love, and who love me, deal with this while trying their hardest to keep my spirits us. I am still dealing with problematic fingernails. I am still fatigued yet still have trouble sleeping.

But…as I said…the hard stuff is over.

There is still more to do. I will have Herceptin infused every three weeks until July. (I love Herceptin, it has saved (is saving?) my life. I don’t want to stop it).

I still need my expanders removed and my implants…implanted.

Soon I will start popping a daily pill, and will pop it for the next 5 years. This pill comes with its own horrid side effects, but, like everything else I have done, I will give it my best shot, while holding onto my right to stop popping it if I so decide.

I have never had a full body scan but I have been told by my oncologists that there is no evidence of disease in my body. None. NED. I’m on a wing and a prayer.

And I am done blogging. I am still walking in cancerland, I will never fully leave this place, but I am done blogging about it. I hope to never, ever have to blog a Part II. I appreciate all of you who have come along on this walk with me. I thank you for your comments, prayers, love and support.

I will be giving back, and paying it forward, for the rest of my life. Because I know of no other way to properly thank you. Every good deed I do in the future will be done in your name. Thank you.

If you have enjoyed reading this blog may I direct you here: http://www.butdoctorihatepink.com/. Ann is a wonderful woman and blogger. Her diagnosis started as mine did (stage 2) but quickly morphed into Stage 4 metastatic disease. She is more graceful, more dignified and more sarcastic then I could ever be. She is my hero.

If you would like to watch me say “thank you” to you time and time again then please go here:  http://www.thechemobag.com and here: https://www.facebook.com/TheChemoBag

With much love and gratitude I leave you with hugs and peace.

Leah

Breast Cancer Survivor.

Survivor??

Lately, I haven’t had much to say. This blog started as a place to keep people informed, then morphed into a place where I could moan and groan and complain “oh woe is me”. I like to think I did my best to maintain some dignity and grace as I trudged thru this muddy place I like to call “cancerland”. I like to think that my words have helped someone else; either on their own walk thru cancerland or by reminding them that the grass isn’t always greener, that everyone has a shitty story to tell and therefore we should judge less and love more.

 

Actually…what I would really like to do is say “good-bye” to this blog. I would like to end it on a positive note…With a picture of the certificate I will soon receive, the one that says NED. No evidence of disease.

 

But I am not ready to do that yet. Not yet.

 

Because I don’t know if I believe it or not. The NED part, I mean.

 

Is it unfortunate that I am “too informed”? That I have read too many horror stories of women just like me, women who battled against the big “C” with every weapon available to them, only to succumb to it later? Possibly. Probably.

 

The odds are in my favor. “Statistically” (how I loathe that word) I am a breast cancer survivor. Most likely the chemo and the rads have gotten rid of any rogue cancer cell that was lingering in my body. At least, that is what all of my oncologists tell me.

 

I have 7 more rad treatments left. That’s it. 7. And it hasn’t been as horrible as I had anticipated. As a matter of fact, my rad onc Dr. Mc says my skin looks really good, “considering”. I could get into the appearance of my skin, but I won’t. It’s a dull story and compared to how I felt after my surgery, and how I felt for the 20 weeks following my first chemo, I feel fine.

 

I would like to just get out of cancerland and go back to the real world. But I know that for the rest of my life I will be walking with one foot in cancerland. While my “active” treatments may be coming to an end, I still have a lot of cancer treatments ahead of me. The Herceptin (my miracle drug) will continue to be infused once every three weeks until July 2013, I will soon begin popping a daily pill for the next 5 years to block my overproducing estrogen from producing cancer (can I just say here, that like all the things I have been told to do to get rid of this nasty cancer, I don’t want to take this pill?) and there is still one more surgery I need to have. And then I just wait. And every day that I wake up without cancer will be a day worth celebrating.

 

But I would like to wake up and NOT have cancer be the first thing I think about. I would like to go to sleep without cancer being the last thing I think about too.

 

I knew how to live my life before cancer. I figured out how to live my life with cancer. I have no idea how to live my life as a survivor.

 

Insurance

Insurance is defined as (simply):  protection against something going wrong.

Last week when I saw my Rad. Onc, when she told me I did not have cancer, that my cancer was removed from my body on May 31, 2012 when I had surgery, she also told me to look at chemo and rads as “insurance”.

Protection against something going wrong. Like, say, my cancer coming back (either local or metastatic).

So now this word “insurance” is stuck in my head.

Many years ago I was involved in a car accident (not my fault). My car was totaled. My insurance company paid off my loan, paid for my ER visit and subsequent physical therapy. There was even a few bucks left over for money towards a new vehicle. I paid my insurance and my insurance took care of me the way it was suppose to.

Alan and I have medical insurance, we pay into it monthly and as a result they help us with medical bills. They help us cover the cost of all these medical bills. (I don’t want to get into the money part of cancer but let me just say this: that shot I got the day after each chemo? $15,000. Each. 6 chemo’s, 6 shots. You do the math).

So you see, having insurance is a good thing. It helps. Without it we would sink into a deep whole of debt that we could never recover from.

But my point is, we pay for insurance and when something goes wrong we use that insurance to help us out.

So…chemo and rads. My insurance. I have paid for this with money. With sweat. With tears. With fatigue. With nausea. With every ounce of energy I had. Worst payments ever.

I have paid my dues (18 more rads to go).

So who pays if something goes wrong?

Me.

Happy News.

Wow! All I can is “wow”! I have had a fantabulous Birthday weekend and I just want to share it with all of you…I have given you all a lot of sad news/bad news/angry news over these last 8 months, so here is something to make you smile.

Starting with last Thursday, Dec 13, my official birthday. I had a lovely lunch with a dear friend I don’t see enough of. Luckily we chose a place to eat that will bring you a free “birthday” dessert but doesn’t sing and dance and make you feel like an idiot. It was good to spend time with her, just to sit and chat and be able to taste a yummy meal. There was one moment during lunch where all hell could have broken loose…but didn’t. It was a very funny moment for Lynn and me but for you…well, if I explained it, you would just be left scratching your heads. Lynn has been a strong voice of reason for me these last months, our friendship is precious.

Alan and Michelle presented me with cards and new charms for my bracelet and we had a lazy night eating breakfast for dinner and just chilling out at home.  Peaceful, calm. Family.

On Friday I went in for my radiation (9 now done, out of 34) as usual and then saw Dr. M. for a bit. Every Friday I see her after radiation. I worked up the nerve to ask her if I “had” cancer or “have” cancer. As far as I can recall, here is how the conversation went:

Dr. M: Oh no, you don’t have cancer anymore. There is every indication that all the cancer was removed from your body on May 31, 2012 when you had your surgery.

Me: But there was cancer found in that one lymph node…

Dr. M: Yes, but only in one lymph node…

Me: (interrupting) But they only removed one lymph node…

Dr. M: Yes, and the cancer found in that one lymph node was so microscopic that it is highly unlikely it had time to spread to another lymph node. And as you finish up treatments you will be scanned again…

Me: (interrupting) But I have never been scanned. Except for my brain and that was because my vision became blurry…

Dr. M: I scanned you. When you had your mapping done you had a CT Scan done of your torso. I can see all your lymph nodes and upper internal organs. There is no indication of cancer anywhere in that scan. If there were a few loose microscopic cells floating around in your body the chemo would have taken care of them, and if not the chemo then the radiation will finish the job.

Me: So all this treatment is for “just in case”?

Dr. M: Yes. When radiation is over I will give you a certificate that says NED on it. No evidence of disease.

Me: So I don’t have cancer.

Dr. M: No Leah, you don’t have cancer.

I don’t have cancer. Happy Birthday to me! Merry Christmas to me!! I will take her statement on faith and believe it is true. What other choice do I have??

And then there was Saturday. Best. Party. Ever. It is hard to surprise sneaky, micromanaging, nosey me. But there were definitely a few surprises. 40 pink balloons? Surprise! The hugest “40” cake in the world? Surprise! Pink luminaries lining the street in front of my house, my driveway and my front walk? Surprise! My brother and sister in law ringing the bell? Huge Surprise! There had to have been 40+ people in my house that night. Multiple bottles of wine finished, laughter, food, happy children. I couldn’t have asked for a more special night. And micromanaging me didn’t have to do anything. Even on the day after when I was reminded how horrible feeling hung-over was, Alan shooed me off to bed while he cleaned up.

I really thought this Holiday Season (including my birthday) was going to be a bust, but I was so wrong. I couldn’t be happier. I have everything I need, everything I want.

Including evidence of eye-lash regrowth.

Happy Birthday To Me

So…I turned 40. Yep. The big 4-0. In the past I have been one of those people who would say “sure feels good to be 28” when I was really 38.

But not this year. I am 40! Thank God, I have lived to see this birthday.

Reality check people: having a birthday is a good thing. A really good thing. And I won’t ever take another birthday for granted, or lament the fact that I am getting older. The alternative to getting older is not an option.

Turning 40 actually makes me laugh a bit. This is the age when most women get their first mammogram, and here I am, with no more mammo’s to gram.

Once again, I find myself thanking my troublesome boobs, so problematic that I had my first mammo at 25, and my last at 39. All those benign lumps and bumps helped to save my life. By the time I had my last mammo, getting a mammo (or ultrasound) had become routine.

Knowing myself as well as I do…I would most likely have been on the phone today with my Gyn saying “I’m 40 now, schedule my mammo!”

It has been 8 months since my diagnosis; imagine what havoc these aggressive HER2+++ cancer cells would have done to my body if say…I found out now that I have breast cancer. What a mess that could have been.

What a freaking mess.

I am done with messes, thank you very much. I am done being a mess. I am happy, I am in a good place, I love and I am loved.

40 is the new 20. It is time to celebrate folks!

Have Beer...Will Ramble.

I suppose now would be a good time to ask one of my oncologists if I have cancer. Or have I had cancer? I am never quite sure which it is. Have or had? I don’t know what cancer feels like; I only know what the treatments for cancer can feel like.

It’s an odd question, I know. My mom would say “Leah, you are cancer free”, and she is probably right. So while still undergoing treatments for cancer can I honestly say that I don’t have cancer?

If I honestly believe that the surgery took all the cancer out of me, then is everything else prophylactic? Is it?? Huh??

It sure as hell better be.

Because, while feeling really good mentally and physically right now, I am so over it.

Mostly I am over looking like a cancer patient. I am tired of the head scarves; I am tired of the missing eyelashes and eyebrows (and the eyelashes...they are still falling out). I am tired of looking in the mirror, although I am an expert at not seeing certain things when I look in there. Seriously.

And, after 6 radiation treatments, I am over radiation. According to my rad onc, I am an “early reactor”. Which is big time medical jargon for…my skin is already pink. And I’m sore. Don’t bump me.

But I will keep going, for now, because I haven’t received permission from anyone (Alan, Mom, Mike) that I can stop…

On a good note…I’m still in chemopause!

Oh, haven’t I talked about that before?

I am cracking myself up…

Smile ya’ll…life could be worse.

 

Radiation...NOT...

Today was my first scheduled radiation treatment. And guess what??

It didn’t happen…

…and no, not because I decided at the last minute that I wasn’t going to do it…although I was (am) still tempted by that thought.

It didn’t happen because the X-rays taken today did not match the CT scan taken the other week when I was “mapped”.

It is such a long story, and yes, I will bore you with all the humiliating details.

Once again, I found myself topless lying on a cold metal table with my arms above my head and my head turned “just so” while 4 (yes, 4) women I don’t know huddled around staring at my chest, drawing on me with sharpies, measuring this and that, adjusting my position down to the millimeter while mumbling to each other.

And once again, silent tears streamed down my face. Humiliated, cold and now in pain.

Pain? Yes, pain. Because somehow or other my left breast (can I call this expanded area a breast? For lack of a better word?) is now in the radiation field and the techs decided to “move” it and then “secure” it by using tape…

…sounds like a good plan to the uninitiated but uh…these breasts? Well, they don’t move. At all. And if you pull my breast to the side and secure its position with tape, well then, it is going to cause me pain. And it’s not going to result in the desired effect because no matter how hard they tried, the breast won’t move enough to be “out of the way”.

So…maybe, just maybe, I will need to go back to the Plastic Surgeon and have him remove some of the saline from the left breast. Not the right breast mind you…oh no…just the left. Some of the saline? Or all? Well, no one was really sure.

I knew these expanders would cause trouble for me during radiation, but before radiation? This was unexpected.

So…yeah…I suppose I could walk around for the next six months (at least) lopsided in the chest area. That sounds like fun…and oh so good for my peace of mind…(please read this in a voice that drips with sarcasm to get the desired effect of my words)

Or maybe, just maybe, the radiation team can come up with a new plan of care, a new map per se, so that I can be radiated without deflating a breast and without causing damage to any important and hard working muscles on the LEFT side of my chest. This will require the radiation team to start again at square one, to re-map me, to maybe, just maybe, add more tattoos to my skin. Yeah…whatever…I like this idea better then the whole deflate a breast and walk around lopsided idea…

So that is the idea that they went with…all dependent on Dr. M’s approval. I was there an hour and a half and when I left all I knew was that Dr. M would call me with her final decision.

Which she did. She believes that the re-mapping will work fine, she apologized for the troubles (an apology wasn’t necessary, I want things done correctly if they are going to be done), she asked if I was OK (I am sure the techs told her I was crying. Poor Dr. M, every time she sees me, I am crying), she assured me that from this point on there won’t be troubles like I had today, she assured me the areas that “need” to be radiated will be radiated and that no other area will get caught in the crossfire and she assured me that I could leave my expanded breasts just the way they are. Both of them.

And I will go back in on Wed., I will once again be X-rayed and hopefully this next X-ray will match today’s X-ray and then I will be radiated for the first time. Then I will be one down, 33 to go.

And in case you were wondering, I did not wait in the communal waiting room. I waited in an exam room, in private, where I didn’t have to make conversation about the weather with any other person wearing a hospital gown. And while glad to avoid the “elephant” sitting in a room full of cancer patients, the desired privacy issue wasn’t met as I still have to walk thru the halls wearing the gown.

I am gonna have to get over this issue of mine. Maybe. But I doubt it.

Post Chemo, Post Port, Pre-Rads.

So here I am, 5 weeks post chemo and doing well. Amazing really. I suppose I have felt this good before, I am sure pre-chemo I have felt better actually, but still…I feel amazing. I feel like “me”, only better.

There are some lingering side effects still going on; I am more tired at the end of the day then I used to be, my muscles still ache a bit (but that could be the Herceptin, more on that later), my mouth still has a weird taste in it, but only after I eat or drink something sweet, I am still waiting for my hair to grow and what the hell is up with my fingernails?? Seriously, these suckers are gonna fall off. I just know it.

But I feel good, damn good. Relaxed even. More energized. Happy. Who’d a thunk it??

On Nov. 19 my port was removed my Dr. C., the surgeon who placed it, and performed my b/l mastectomy. Originally I was told that the port would stay in for the duration of my Herceptin infusions and for “just in case you need more chemo”.

Just. In. Case. I. Need. More. Chemo.

Those words have haunted me for months. Like a neon bubble over my head. The port was a constant reminder of my illness, as if I don’t have enough reminders of it. So imagine my surprise when Dr. Sh. had told me it could come out. He was the one who uttered the above mentioned scary words. Guess he doesn’t think I will need chemo again in the foreseeable future. Who am I to argue with him? He is the MD after all.

Altho, Dr. C seemed surprised when she took it out, as she held it above my head, all 12+ inches of that strangely blue port and its’ catheter, that Dr. Sh. said it could come out.  “Don’t you need this for the Herceptin?” she said as it dangled over me. Nope. They can start an IV every three weeks for that, thank you very much.

By the way, I had my first of my every three week Herceptins the other day. Feel fine. Nose is runny (normal) and muscles ache a bit but otherwise, I feel fine. Thank God. I really do enjoy feeling in fine.

Really. You have no idea.

And my hair…a great topic of discussion these days, is growing in. Some places are longer than others; I think the longest is at least an inch, the shortest maybe ¼ inch. Whatever. It’s growing. There aren’t any bald spots anymore. And as soon as I no longer see scalp I am getting it colored. What is up with all the gray?? And…as it turns out…my hair isn’t as dark brown as I thought it was (as I colored it??). It’s growing in light brown, and, as of now, straight. I’m sure it will curl eventually.

So I have a few more days to enjoy until radiation starts, and enjoy them I will.

Happy THANKSgiving.

Yesterday, Thanksgiving, I tried to count up all the things I was thankful for. The list was endless. I think it is human nature to just take for granted what we have when we really don’t want for anything. I have a loving family, a network of friends that I adore, a comfortable home, a vehicle and a job when I am ready to go back to it. Which, by the way, I am sort of ready to do.

There are things I want, but nothing that I need. It has been a hard lesson to learn. But it was clear last night as Alan and I discussed whether or not he should stand in line at Walmart to get that TV that was on sale for our bedroom. We have a TV up there, an old one that sits precariously atop of a dresser. It works fine. But it’s old and clunky and can’t be attached to the wall. I have wanted to replace it for a long time. But I don’t need to.

Really, I have taken so much for granted in my life. I am ashamed of myself when I think of it.

My eyes have been opened. I have stood face to face with my mortality and decided living was better than dying and so I chose to fight. I have no idea if I will truly win this fight or not. I believe I will, but I don’t know. It isn’t up to me. Cancer cells want to live too, and fight desperately to do so. What they are too stupid to know is that while fighting to live they kill their host. And then they die. If I were a deeply religious person I would say it is in God’s hands. But I’m not deeply religious.

Even so, I will say it anyway. It is in God’s hands. I will fight it because God has given me the ability and resources I need to fight it, but ultimately my life is in God’s hands.

Did you see what I just said there? Need?? Yes, I need to fight, to live. Not because I want to, which I do, but because I need to.

Because I think God has bigger plans for me and he doesn’t want me to continue to live as I have been living. He wants me to live better, stronger.

I didn’t think cancer would change me, I figured I would do what I need to do and then just go back to being me. I see now that I was wrong about that. I see a new and improved me coming out. I see a better person emerging. One who doesn’t sweat the small stuff, one who plays more, laughs more, and (if possible) is more sarcastic. I see a more loving me, a more tolerant me, a calmer me, a less judgmental me, a me who more quickly sees your point of view.

Yesterday I jokingly made fun of someone who wasn’t here, and then felt bad about it. What I said was in humor but if overheard would have hurt that persons feelings. The old me wouldn’t worry about that, the new me feels bad.

I hope you can see this new me when you are with me. I hope my struggles have opened your eyes too. I hope you see now what is truly important and what is not. I hope you remind me of who I am now when I falter.

I am thankful to you, my reader; you have helped me thru cancerland in some way or another. Your support means the world to me, I could never repay you, but the kindness you have shown me will help me to “pay it forward”. And when I do so, I will do it in your honor, for all you have done for me.

Radiation "Mapping"

I can explain being “mapped” for radiation therapy in two words: Total Humiliation.

Please, join me in this little journey into hell…

First thing you do is go into a unisex changing room to change out of your clothes and into a gown. In my case you only have to change from the waist up. Also, in my case, I cannot take off my shirt without first taking off my head scarf. Which is a pain. It would be more of a pain to take it off, put it back on while wearing the gown then take it off and put it back on after I put my clothes back on. So I brought a hat.

Then you go into a unisex waiting room and wait till it’s your turn to go back into another room.

It will be like this when I go in for radiation too…not just for the “mapping”.

A unisex changing room and a unisex waiting room. I have issues with this. I am not a “flaunt what you got” kind of person. And right now what I “got” is a bald(ish) head and square expanded boobs, that don’t move. It’s embarrassing. And I refused to go into the unisex waiting room. And I will continue to refuse to do so. They will just have to find somewhere else for me to wait. And, while I was in the mood to refuse things, I refused to have a male technician. It’s not just “luck” that my radiation therapist is a female.

But I haven’t even gotten “mapped” yet and already I am humiliated?? Can it get worse?

Yes.

Because then I take off my gown and lay down on a cold metal slab with my arms raised over my head, a big rubber band over my feet (to remind me not to move them) and get drawn on with a sharpie while they position my head “just so” and tell me not to move as I enter some weird round machine that whirrs and does whatever it does. Then, I get three little tattoos, and was told I will get one more on my first rads appt. And was that position ok for me because that is the position I will be in each time I go in for rads?

I just lay there, silent tears coming down my face. I tried really hard not to chew open my lower lip but failed miserably at that. So now my mouth hurts. Again.

The technician told me to find my “happy place” but I couldn’t. All I could think was “Thank God I am not a man with prostate cancer”. Imagine the position he would be in. Oh the humiliation.

Anyways, I will get radiated daily (well, Monday thru Friday, not including Christmas Day and New Years Day) starting on Dec. 3.

Oh yeah…I am sooo looking forward to this.

Looking Backward And Forward.

Recently I met a local woman, my age, who was diagnosed with HER2+ breast cancer. A woman who is at the beginning of her journey. A woman who said to me “isn’t it funny when someone tells you that you are brave? It’s not like I asked to have breast cancer.”

Oh how that brought back memories. I remember thinking the same thing. I think I even blogged about it.

I never felt brave. Or strong. I felt scared, still do…but in the beginning, when you are newly diagnosed and you really don’t know what is coming next there is nothing but fear. Fear of the unknown is something everyone can relate to, but when it’s your life on the line the fear outweighs all other feelings. And feeling strong or brave doesn’t come in to play.

If you talked to me during the time period between Ap. 20 and Oct. 23 then you know I was scared. Yes, I bravely endured a bilateral mastectomy, and I bravely endured chemo. But the significant word here is “endured”. And sometimes I didn’t endure it bravely, sometimes I just endured it. And the thought of ever having to go thru it again brings me to my knees.

I hope I displayed some grace, some dignity, throughout these trials. But I know at times I did not.

But now, now…looking back I can say “yes, I was brave and I was strong”. I did it, and I plan to continue to “do it”. I plan to continue to follow the protocols and standards that have saved many lives before mine.

Don’t for one minute think that my journey thru cancerland is over. I have much more to do before I can close this book, many more chapters to go thru. All I can really hope for at this point is a happy ending.

I have been lucky to have made many sisters in pink while in cancerland. Some ahead of me in their journey, and some who walked right alongside me, going thru everything I was going thru at the same time. These women have been angels to me, life lines at times. The only people I could talk to that really understood me. And now it’s my turn to pay it forward. To help those sisters in pink who are walking behind me.

I pray I give as well as I received. To my new local HER2+ sister, my triple neg. sister and my HER2+ sister in CA…I lift you up in prayer and surround you in light and love.

20 Weeks.

20 weeks have now passed since I first walked into the infusion center at LVH and had my first chemo (Taxotere and Carboplatin) and Herceptin infusion. 20 Tuesdays. Every third Tues I received TCH but every single Tuesday I received H. Every. Single. Tuesday. For 20 Tuesdays.

For those of you who haven’t been paying attention, Herceptin is not a chemo drug. It is a medicine that specifically targets the type of breast cancer I have. HER2+++ breast cancer. Until a few years ago, HER2+++ breast cancer was basically a death sentence.

Now I will go to the infusion center once every three weeks for an infusion of Herceptin until next July. While I am glad to not have to go there every week anymore, my happiness is overshadowed by the fact that radiation is daily for like 7 weeks.

But I do have some time to rest between now and radiation. And during that time period I do not plan on resting. There is so much I want to do. So much I feel I need to do. I feel like I missed so much over these past 20 weeks that I just need to catch up. First on my list of things to do….GET MY PORT OUT!!

That’s right folks. Dr. Sh says it can come out so out it will come. I hate this stupid thing. It has made getting infused easy, of course, but I look like I am perpetually angry, what with this huge jugular vein thing I’ve got going on…which is really just the catheter making my vein look so big. It’s just nasty. And it’s a constant reminder of my “sickness”. As if I don’t have enough reminders of cancer when I look in the mirror…

The infusion nurses will just have to start an IV in my hand every three weeks from now on. That isn’t very pleasant either but such is life. Life ain’t always pleasant.

Mentally my friends, I am in a better place. I can’t believe I can say that 2 weeks after a chemo treatment, but it is 2 weeks after my LAST chemo treatment and knowing that has done my soul good. So even tho chemo sucked this last time, even tho I still have a stupid cold, even tho a big storm came thru and knocked our power out and even tho my Nana died, I am mentally feeling good. 20 weeks ago you could have told me this, and probably did, but I wouldn’t have believed you.

Next Chapter: Radiation.

You have all heard me complaining about radiation. You know I don’t want to do it. You know I am fearful of what it will do to my skin. You know I am fearful that it will damage my expanders. You know I don’t want to put off getting rid of my expanders and getting my implants implanted any longer then I have too. You know I am torn between getting it started ASAP and waiting till the new year to get it started.

So I am not going to get into any of that again.

Last night Alan and I met once again with the radiation oncologist Dr. M. Again it was discussed the idea that rads is recommended based on my young (?) age, my HER2+ status and because only one node was removed and found to have a small (0.35mm) micromets of cancer. I still wish a few more nodes had been removed…but I again stated that I was more against a total node dissection then I was against rads.

So rads it is.

It’s a big time commitment. It will be daily (ideally once every 24 hrs, but there is some wiggle room in there) for 34 zaps. Not counting weekends and holidays (because obviously cancer doesn’t spread on weekends and holidays) this will take the better part of 7 weeks. Fun times.

I can expect to experience fatigue (but nothing like chemo), redness (like a sunburn) and that is about it.

So now that I have agreed to do it, the only question left is when to start.

Dr. M. was ok with starting ASAP. She was less then ok with starting in Jan. Usually rads starts 4 weeks after chemo…so that would put me at Tues. Nov. 20.

We found a happy medium and my rads will start the first week of Dec. Before then I need to be “mapped”. Mapping is when they tattoo little blue dots on my skin to mark the areas being radiated (think Phoebe from the show “Friends” when she tattooed the whole world on her shoulder).

Alrighty. Now…lets say this cancer comes back somewhere else in my body. It was the chemo’s job to stop that from happening. I did chemo. I did it for the recommended 6 infusions. So if the cancer comes back elsewhere in my body, well…not my fault. I did chemo. I did what I was told. If the cancer comes back locally, meaning it comes back right where it started, well…not my fault. I did (will do) rads. I did what I was told.

My conscience is clear. I have and will continue to, follow directions. I have put my trust in the medical professionals tasked with saving my life. But I once again reserve the right to quit rads at any time. With your permission, of course.

On a funny note…when Dr. M walked in the room she said “aren’t you the pink flag woman?” Nice, huh?

In Michelle's Words

Two summers ago Michelle and I joined some friends for a kayaking trip down the Susquehanna River. About halfway thru the trip was a rope swing hanging over the river where a few teenagers were hanging out and having some fun. We figured this was a good place to stop and eat and maybe try out the rope swing ourselves.

Little Miss 5 Year Old Michelle really wanted to try out that rope swing and after I let her hang on it a few times but only swing out over the water and back to land I asked one of the teenagers to hang out in the water after he jumped off and I would allow her to “let go” if he would stay there and make sure she didn’t float away. He said “yes” so I handed my phone to a friend to record the moment and after making sure her life jacket was secured I gave her a big push on the rope and when she got to the right spot we all screamed “LET GO!” And let go she did.

I have it on tape. Her ponytail went straight up off her head and she splashed into the Susquehanna like a champ. The teenager made sure she got back to land safely and as she ran towards me she was saying “I did it. I can’t believe I did that!”

I did it. I can’t believe I did that.

I did it. I can’t believe I did that. I can’t believe all I have been thru lately. All I have subjected my body too in the name of good health.

I have had both my breasts removed and dealt with a long and at times complicated post surgical recovery. I did it. I can’t believe I did that.

As soon as I was over the worst of that I started having chemo pumped into my body. For a total of six times, over the course of 18 weeks, I willingly allowed poison to be infused into my body. I did it. I can’t believe I did that.

Words cannot describe how I feel about closing this chapter of my treatment. I have a lot more to do before I am done, a lot. But chemo is over. Dare I say the “worst” of it is over?

It will take a long time for my body to heal, to get back to “normal”.

But,

I did it.

I can’t believe I did that.

CHEMO CHAPTER CLOSED

And that is all I am going to say about that.

For now anyway.

Tomorrow

Oh My God. Can it be tomorrow already? Can I just get this done? OVER OVER OVER!! LETS GET IT OVER!

Lately people have been asking me if I am excited that tomorrow is my last chemo, or telling me how excited they are for me. I find that word “excited” to be an odd choice, but I get it…I get why it’s used and I don’t begrudge anyone for using it. But I don’t think “excited” is a word I would use to describe how I feel. I am “happy” that after tomorrow I can close the chemo chapter of my treatment, really, truly glad to be done with it. You have no idea.

But I have absolutely no “happiness” or “excitement” of sitting in that chair again. I am not “excited” to get pumped full of chemo again, I am not “excited” to fall into another chemo coma. I am not “excited” to feel thisclose to death again.

Don’t get me wrong here, mentally I am in a better place than usual for the day before chemo. Because I know this is the last time. I won’t be sitting in that chair thinking “I can’t believe I have to do this 5 (4, 3, 2, 1) more times. Tomorrow I will sit there and think “I’m done, please God let me be done forever”.

But a part of me is scared to stop chemo too. The poison is suppose to save my life, right? How can I be sure I got enough? Or the correct kinds? Because it’s a “standard of care”? Standard of care. As in…this works for most people, let’s see if it works for Leah too? It’s a crying shame that the chemo standards are base on the cancer and what has worked in the past and not the person.

But…on the other hand…this course of chemo I am on has statistically worked. And the Herceptin which I have received weekly since July 10 and will continue to get weekly for two weeks from tomorrow and then every third week until next July also “statistically” works. As a matter of fact, it is considered a “miracle” drug for early HER2+++ breast cancer. I sure hope it works a miracle on me.

Of course, according to my mom the miracle has already occurred. I have more faith in my mom then in any MD or chemo anyway…so “Yay Mom!”

I just want to get it over with.

Field Of Pink (take 3)

Here is what I wanted to say today at The Field Of Pink when Cathy asked me if I had anything to say:

I am grateful for every day that I wake up, open my eyes, and take my first conscious breath of the day.

I am thankful for my family, friends and sisters in pink who gently hold my hand and walk with me as I travel thru cancerland.

I am hopeful that my daughter will live to see a world free of breast cancer.

I am humbled by the outpouring of love and generosity my community has shown its neighbors.

Here is what I said:

Blah blah sniff, cry, blah blah blah. Thank you.

Today was truly wonderful, I am truly happy. I will let the pictures tell the story.

Field Of Pink (take 2)

Recently a friend of mine put on Facebook a picture taken in his hometown of a Field Of Pink. In short this was a picture of a field full of little pink flags. Statistically 1 in every 8 women will be diagnosed with breast cancer so these flags represented 1 out of every 8 women in his town. After seeing this picture I wondered, could something like this be done here in my town.

Turns out that yes, it can. I brought the picture to my local community center and showed it to Cathy who is in charge of these kinds of things, and who is a breast cancer survivor herself. My thought was that even tho this is Breast Cancer Awareness month we could maybe throw this together and plant our field in the spring, when everything is starting to bloom. Cathy had another idea tho and within 8 hours she had put it together so that it could be done this month. As a matter of fact, she put it together so the field could be planted on Oct 21, so that I could participate in the planting and not be in a chemo coma as my LAST chemo is scheduled for Oct 23. To make things even more exciting for me the field in which all the little pink flags will be planted is a field I can see from my back windows.

625 flags will be planted. That number came based on the number of women in my township. So…if 1 in 8 women in my township were diagnosed with breast cancer, 625 women would have breast cancer. Scary number.

Cathy and I have shamelessly been promoting this fundraiser for the last few days and already we have raised over $300. All money will go to my new BFF Jane’s (remember Jane? I love Jane) pet charity The Pink Ribbon Fund. This fund thru LVH helps women AND men being treated for breast cancer pay household bills. All money in this fund goes directly to families in need, and all money that Cathy and I raise will go to this fund. No gimmicks. We are giving. We don’t need 50,000 “likes” to donate this money, we aren’t giving a “portion of the proceeds”, we are giving it all. All you have to do is donate $1 to sponsor a flag.

This feels good. This is doing my soul good. This has given me something to think about other then my own damn self.

Which surprises me because I have been telling myself since April 20 “Leah, just get thru this. Do what you gotta do and then get on with your life. Without looking back. You don’t need to be any different then you were.”

How could I not be different? How could I move on and forget this time period of my life? For the rest of my life every ache I have is going to cause me to think “is it back?” This is HER2+ breast cancer, it is scary and it is ugly and chances are if I were to be diagnosed with cancer anywhere else in my body at any time in my life it will be HER2+. And then I will be stage 4. And my back aches…

I won’t be “cured” until I die of something else.

So how can I just “move on” and give no thought to research? No thought to other (wo)men who are diagnosed? No thought to raising awareness? No thought to raising money? No thought to anything but me? I have been only thinking about myself for long enough now.

Field Of Pink