Work

Today I had to go back to work. It’s part of my normal life. And I am one of those lucky people that actually enjoy going to work. Even when I have a bad day at work, I still have a good day. I’m a home care nurse, so for the 8 hours that I work, it’s just me and my client. I have all day to assist him with whatever he needs, and I am honored to so. I get to use the knowledge and skills I have spent years perfecting to make someone else’s life more bearable. My client is awesome and for the two years I have been with him we have formed a great bond. We are friends. We love each other. And I could spend days telling you how wonderful he is, but there are HIPPA laws I must adhere to. I can say this tho: like my step-daughter Mary, looking at him helps me put my troubles into perspective.

The only downfall of my job is that it is physical. Sometimes that is a good thing. Other times, like when I had elbow surgery, it’s a bad thing. I can’t perform my expected duties if I can’t use my upper body strength. I needed to take six weeks off already this year to allow my elbow to heal. I needed to take two days off a few weeks ago because of the two breast biopsies I had. Because after a biopsy you aren’t allowed to lift, push or pull for 24 hours. I needed to take off last week because of MD appts. I will need to take off a day and a half next week because of MD appts. Which wouldn’t be so bad, if I worked full time, but I don’t. I work two, maybe three days a week.

So that sucks.

And now I am going to have a double mastectomy. And I really doubt I will be able to lift, push and pull for a while after that. Then I will start chemo and I have no idea how that will affect me physically. I know someone who has the same type of job I do and when she had chemo she worked full time and didn’t have terrible adverse reactions. I know someone else who had chemo and became severely anemic. Her bones ached. Physically she felt horrible. So how will I react? Will I put on my big girl bra and say “I can do it?” Or will I spend that time hiding in my room listening to the sounds of summer pass me by.

Which is another thing that really pisses me off. It’s just about summer time. Summer is my season. I love summer. I love the outdoors, I love the lake, I love the mountains, I love the pools, I love the river, I love my kayak. I love the BBQ’s, the beer, the back yard spontaneous get togethers. I love to watch Michelle enjoy summer. I love to smell the scent of chlorine, sun block and sunshine on her. I love when I smell like those things too.

And I know I shouldn’t complain about it. It’s just one summer, I will have plenty more. But I can’t help it. I love summer. And I had plans already for this one. And now I don’t know if they will come to fruition. And then not only will I be pissed off, but Michelle will be too. She is too young to truly understand, she might “get it”, but she won’t really understand. A crappy summer will break her heart. So I will break her heart.

Tyler and Mary

Those of you who know me know I have two step-children. Tyler is 22 and on his way to becoming a respectable young man. He no longer lives at home but comes by now and again to hang out. And eat. Mary is 18 and spends one week with us and one week with her mom. She is a special girl with special needs related to an accident she was in almost 10 years ago. To put it into perspective, what I am going thru now is horrible, but it will end someday, on a happy note. What Mary is going thru now is horrible and will follow her throughout her life.

Alan and I decided to tell Tyler and Mary this news yesterday. Separately. We wanted to explain it to Mary in quite the same way we explained it to Michelle, and not tell her yet about the mastectomy and chemo, to give her time to process this info without putting her on overload. She handled it well and immediately got on the web to find me the right treatment. Mary would do anything she could to help anyone.

We treated Tyler like the young man that he is. Actually, I sat down alone with him and told him. It’s so hard to say those words out loud “I have breast cancer.” I didn’t hold anything back. He knows everything we do. And I directed him here to this blog also, in case he wants to get inside my head. And he likes that getting inside other peoples head stuff. And he respects the written word. We may not be related by blood but we do have that in common. He took it well and gave me the best hug I have ever gotten from him in all these years. And I told him he had to come mow the lawn this summer.

So now everyone knows. Except for all those people who don’t. Those people who live on the periphery of my life. The people I like well enough but don’t really know. The “mom” friends. The folks across the street. You know, those people. And I really wish the news would spread so I don’t have to say those words again.

How Are You

How are you? This is a question multiple people ask you multiple times a day. And you ask multiple people this question multiple times a day. And even if you are having a kind of crappy day you find yourself smiling and saying “I’m fine.”

Recently I have begun to hate this question. From the guy at WaWa, my family, my friends, my medical providers, my every one. I especially hate it when the person doing the asking has a sad look in their eyes. Because that person knows how I am doing. So really, why are you asking?

You wanna know?

Last night was the first night I slept thru the night. The first night I slept more than 5 hours. But before I went to bed I had one Xanax 0.25mg and two Tylenol PM.

I can’t read. I love to read. But I can’t do it right now. Because I can’t concentrate.

I like to play Words With Friends on my smart phone, but I resigned all my games. Because again, I can’t concentrate.

I have a pile of mail 3 inches high. Some of it is bills. And I don’t care.

I can’t speak very well right now. Sometimes I can, but most times I start to cry.

I can’t eat. I’ve lost 4 pounds. When I can eat it’s oranges, grapes, watermelon mostly. Very little real food. I know I need to eat, I just can’t. I can’t keep it down.

I cry when I drive. Out of nowhere.

I can’t sit still but there is nothing I want to do.

But Alan says that now that we have made a decision I can at least say “today was a pretty good day.” And I guess I can say that.

 Sometimes it might even be true.

Genetic Testing

Today I had a Cancer Risk and Genetic Assessment done. This involves a long talk about your family history; ages, illnesses, cancers, deaths. It’s a very involved process. Interesting too.

But it all boiled down to one vial of blood. And that vial of my blood is now being sent to a lab in Utah to see if I have the BRCA 1 and 2 genetic deformities in my DNA. We all have the BRCA genes. All of us. Men and women. Some of us have deformities to it. And in about 2 weeks I will know if I do.

So the info I am about to share is what I learned today, to the best of my knowledge. I have pages of notes that I took while I was there but that doesn’t mean that I am 100% accurate in what follows.

There are three different results I could get from this test.

1.       I could be BRCA +. That means I carry a hereditary gene that causes breast cancer. So, just because I have breast cancer doesn’t mean I have that deformity. If it is positive, it will be suggested that I have my ovaries removed. Because our ovaries produce estrogen and my estrogen is behaving badly. If it’s positive they would suggest my mom get the testing too. Her ovaries were removed at a young age so it’s possible that she has avoided breast cancer due to a BRCA deformity because of that. If she is positive then it will be suggested that my brother (yep, a man) be tested (he could be a carrier…and then so could his son….and his….and it’s also linked to other cancers too, like prostate), and all the women on her side of the family. If her test was negative then they would suggest that all the women on my fathers side of the family get tested (funny, I don’t remember her saying my father should be tested). If I am positive then they would suggest that Michelle get tested at the age of 18. And then start regular mammograms at the age of 29, 10 years younger than the age her mother was when she got diagnosed with breast cancer. If I’m positive my risk for a second form of breast cancer goes up to 64%.

2.       I could be BRCA -. And if that’s the case, then my genes didn’t cause this cancer. And I will never know what did. Malfunctioning cells, I suppose. And my risk for forming another type of breast cancer is the same as the general populations. But they would still suggest that Michelle start breast screening at age 29.

3.       The results could come back as “Variant of Uncertain Significance”. This happens to <3% of the population. As a side note….you know that saying “bad things happen in 3’s”? Ok, 1, some of you know about the elbow surgery I had in January. They found a muscle in my elbow at that time that only 5-8% of the population has. 2, I have a form of breast cancer usually found in post menopausal women. And 3, well, I think that’s going to be this weird variant. If it did come back as this, there is another test called the BART test. I don’t know what those letters stand for but I know that I don’t meet the insurance companies two guidelines for having this test. I would need to have been diagnosed with breast cancer under the age of 50. Which I was. And I would need to have 2 or more family members who have been diagnosed with either invasive breast cancer or with ovarian cancer. Which I don’t. And this test is upwards of $700. So nothing like the man making it easy for women to take care of themselves, huh?

Here is something I wrote real big on my notepad: Having a double mastectomy removes 95% risk of another breast cancer!! Unfortunately I don’t know if that is a general statement or if that would be with a positive or negative result.

Either way, it reinforces my decision.

And I was told that often women with a family history of breast cancer who have this genetic testing come back positive often remove both their breasts prophylactically, and not because they have breast cancer.

And that also reinforces my decision.

And while I ask you to respect my decisions I will respect yours too. But let me be Jane here for just one moment. If breast cancer is in your family and the worry that you may get it is always in the back of your mind, go get this test. Even if you don’t really know your family history. Go anyway. I bet you could get this test and then just hold on to the results until when, and if, you are ready to find out. At least it’s there. I'll go with you and hold your hand.

I did this test for me. Not because I have breast cancer but because if it’s positive I want to have my ovaries removed.

And I did it for Michelle. So she can be prepared with the knowledge she needs as she becomes a woman.

Me

I realize there are people out there reading this blog who don't know me. So I would like to share a  picture of me with you. This photo was taken last summer while friends and I were kayaking down the Susquehanna River. This isn't the best picture of me, but it is the perfect picture. Because it will show you who I really am.

Jane

This morning I had a 45 minute conversation with Jane. Remember Jane? My nurse navigator, my hand holder, my partner on my way to survivorhood? That Jane. Poor Jane. She has been reaching out to me and trying to talk to me since day 1. Which wasn’t that long ago, I know, but to me this past week has felt like half a year. But every time she got me on the phone I would clam up. Truth be told, I really haven’t physically, verbally spoken to many people this past week. Just a handful of people have heard my voice. But she was doing her job, and I am part of her job. And I know I need her, I’m not an idiot. I just couldn’t talk. And I couldn’t hear either. So I emailed her and invited her to visit this blog. She wanted to know my thoughts and they are all here so I figured this would be a good place for her to be.

Then after I got the call from Dr. Chung…oh my God, I needed her. But she was out of the office, which I knew, because she had emailed and told me. But I left her a teary hiccup-y message and asked her to call me after 9 this morning.

At 9:02, she called. But by then I had had my moment of clarity. And while she has access to my blog she hadn’t read my Chemo or Clarity postings. So I filled her in. I told her what you all already know. I told her my final decision. And she, like a good navigator, told me my pros and cons. She again informed me of my other options. And when she was done doing her job, she graciously accepted the decision Alan and I made based on what we feel is my best bet on a long life, and the least risk of a recurrence of breast cancer.

But here is a truth: A double mastectomy may not be needed in my case. Its quite possible that my cancer mass is small and the cancer hasn’t spread. The only way to determine that is the MRI. But if I don’t do the MRI, I will never know. But lets say it is small and hasn’t spread. I could have a lumpectomy, followed by chemo. And then I could wait. And wait. And wait. And for the rest of my life wait. Because it could come back. It could come back after a mastectomy too. But the chances of that are slim(mer). And I want the best possible long term prognosis. So while my choice may not be the choice you think is right, I say “PUT ON YOUR BIG GIRL BRA AND GET OVER IT!” This is my life. And I can’t get those 2 nasty words out of my head. Invasive. Aggressive.

And again, she offered me support groups. SOS: Support Of Survivors. It’s a group of volunteer breast cancer survivors who will talk to me. And I should accept that support, but I’m not ready yet. Currently, I have Francine, a survivor, my newly crowned “booby sister” to talk to, and an acquaintance going thru cancer treatments to talk to. But I have a feeling once I am told my surgery date, I will be sending out an SOS.

And I vow to one day be on the other side of that SOS.

But I did accept one offer. The one for family support. For Michelle. Because she needs it the most. This has been devastating to her, and we have not yet told her our plans. She has seen those sad little bald baby pictures and she doesn’t want that to happen to me.

So again…I am waiting for a call. Always waiting. Every time one question gets answered, 18 more questions pop up.

But, at least now I can actually speak to Jane, and hear what she says. And that has got to make her happy. Thanks Jane.

FYI #2

This blog is set up on the Pacific Time Zone. I am not computer savvy enough to fix that. So if you are noticing the time of my posts, if that is something you find important, please add 3 hours.

Hair And Friends

Ok, so I now I have to come to terms with chemotherapy. Hair loss. As many of you know, I have a love hate relationship with my hair. Mostly hate. It’s too thin. It’s too frizzy. It’s too gray. When it’s long I look like a hippie and when it’s short I look like a poodle. And it’s all going to fall out. And eventually grow back in. Good Lord….that is going to be a mess. Besides gray, what color is it?? I don’t even want to know. But I like to wrap bandanas around my head. And I guess I will learn how to tie a head scarf knot. And Kimi offered me her hair but I think by the time she cut it and they turned it into a wig my hair would be growing back in. Plus, it will cost money. Lots of money. Like $500 or more from what I’ve seen. And as much as l love her blonde hair, I am not a blonde. And Mike, well…we don’t want to go there, do we. He’s sweet and well meaning…but really….ewwwww

Then my friend Romina puts a link on FB for www.friendsarebyyourside.com They will direct you to a local participating Salon where women with breast cancer can get a human hair wig. FOR FREE!! Yeah Baby!! So I call the closest salon but the lady who answered didn’t know what I was talking about and the manager and the owner were both out. I have watched enough of Tabitha’s Salon Takeover to know that if neither the manager nor the owner of the salon is there then, well, it’s not a place I want to go to. So I called the next two closest places but they don’t participate anymore. HOWEVER!! The stylist Martino Cartier is the dude who started this program and he has 2 salons in NJ. www.martinocartier.com AND I HAVE AN APPOINTMENT WITH HIM NEXT THURSDAY!!! YEAH BABY!! I am so excited because I was so worried about it and less than 24 hours after I started worrying about it my worries are over. Thank you Romina!!

This morning, after Paulette read my blog, she texted me and this is what she said “2 things about your blog that bothers me. 1. At the YOUNG age of 39? Who are you kidding? You’re old like the rest of us. Come to terms with it now. 2. Nice way for you to get BOOBS! Get a D!! Then let me check them out!” Then she asked if she could have the $150 worth of bras I recently bought at Victoria’s Secret. (What timing huh??). Nice friend right? Don’t worry tho, I had a great response to that but I won’t share it here because I love her so much I don’t want to embarrass her publicly. But she knows I spoke the truth.

Also this morning my friend Judy texted me to tell me that she emailed my blog to her sister and her sister in law. The three of them are running in the Dirty Girl 5k for breast cancer next week. And they are going to wear Team Leah T-shirts. I love Judy too.

Last night when I got the call from Dr. Chung I was so shaken and so upset that my friend Pam took Michelle to her house. She stayed there for a few hours and had dinner there. Thank God for Pam and the fact that her house is right near mine. This morning I called her to thank her again and she must have read my blog already cuz she answers the phone all sing-songy and says “I think it’s great that you made this decision Leah. It’s the right one for you.” I love Pam too.

And my new friend Francine just texted me too, asked if I was interested in making a cast of my (current) breasts before I get my new ones. I am waiting for her to send me more details about this but I have a feeling when I get them it will make me laugh. I love this woman too.

I am so blessed and look forward to a long life surrounded by these five ladies, and all of you. Thank you all for the love and laughs.

The clarity I received is bringing me a sense calmness I truly thought was gone.

Clarity

Last night I had the most amazing conversation with a complete stranger named Francine. She said I could blog about her and our conversation and so blog I shall!

But first let me tell you how I found her, or, how she found me. The other day I hi-jacked Alans FB wall and reached out to his friends for support and love. I added my blog to his page in the hopes that some men would stop being such manly men and reach out to him. His friend Patrick in CA reached out, to both of us. And then his girlfriend Francine reached out to us too. Francine is somewhere around 35 or 36 years old. And 10 years ago (10!) she was diagnosed with Stage II breast cancer. When we spoke last night I was horrified by her story and touched by grace and charm. Cancer ruled her life for years. She had it all. Lumpectomy. Radiation. Double Mastectomy. Chemo. Breast Reconstruction Surgery. She is now a 6 year survivor.

She was open and honest with me. And for the first time in 7 days I spoke to someone about my cancer without crying. (7 days…seems like a lifetime…)

Because my biggest fear is the unknown. There is so much I still don’t know. Like…has my invasive and aggressive cancer been aggressively invading other parts of my body? I don’t know. Based on the fact that I don’t have swollen lymph nodes, I will guess not. And nothing will tell if it has except for a full body scan. Which I might request.

And people have been asking me this past week “What do you want to do Leah?” Yesterday Dr. Chung said “You have to make a decision.” But I still have all these unknowns. And I want answers. And I could take some time and get those answers. I could probably have them all within a month.

But I have aggressive and invasive breast cancer. And I can’t get those words out of my head. Aggressive. Invasive. And if these past 7 days have felt like a lifetime, imagine what another month would do to me?

Here is one thing I know, the biggest truth I have: I want to live. Live to see Michelle graduate college. Live to see Michelle get married. Live to see Michelle have babies. Live to see the Grand Canyon. Live to go to Costa Rica. Live to visit Italy. Live live live live live live live live. Is that asking for too much?

It’s my life that is on the line here.

And I have invasive and aggressive breast cancer. At the very young age of 39.

Somehow, in a way I really can’t describe, Francine was able to put this all into perspective for me. Its not something specific that she said, I really can’t put my finger on what happened but by the time I hung up the phone I had something I had been searching for these last 7 days.

 Clarity.

And guess what? Before I spoke to Francine, Alan spoke to Francine. And he felt the same way I did when he got off the phone with her. Like he could finally breathe. There is something about this woman Francine.

Some of you may think what I am about to say is putting the cart before the horse. But the way I think of it is this: I can finally see the forest thru the trees.

I need to be more aggressive then this unwanted visitor that has decided to take over my body. I’m in charge of this cancer and I am going to kick its ass.

Alan and I agree. I gave myself the night to sleep on it and when I woke again at the horrible hour of 4 AM I did not immediately think “oh no…what am I going to do”, I did not immediately cry. No, my first thought was “I HAVE A PLAN!”

 I will get the genetic testing done tomorrow as planned. It will be good info to have, and helpful info for Michelle to have as she becomes a woman.

Then I will have a double mastectomy

Then I will have chemotherapy

Then I will have a C cup

FYI

I have been asked quite a few times if it's ok for people to share my blog. OF COURSE IT IS! Put a link on your facebook wall, email it to your friends. I can use all the love, support and prayers I can get.  If you know someone who has had, or is currently being treated for, Invasive Ductal Carcinoma. Or who is ER+ (weak) PR- and HER2+ I want to hear from them.

Oh my God, I really want to hear from them

Chemo

For the past 6 days I have been trying to process, and come to terms with, the most devastating news I have ever received. It’s real difficult and it hasn’t been processed or come to terms with.

And now I have worse news.

Further testing on the biopsy samples have shown to be Estrogen + (but weakly), Progesterone – and HER2 +. From what I understand, this is not a great combination. Google it if you must, but I don’t recommend it. It ain’t pretty. (Mom, I know you already have). In a nutshell, this is aggressive. Like its owner. It’s not good. At all. No cancer is good, but some are easier to treat and some have a better long term prognosis.

Dr. Chung called me this afternoon. From what I understood of that conversation I could right now choose to skip the Genetic Testing for the BRCA 1 and 2 gene because she feels that would come back negative. Google that too, cuz I ain’t getting into it. I could also skip the MRI right now too, if I want. And go right to a mastectomy. But without the MRI would I risk removing just one breast? Remember, this is INVASIVE breast cancer. And now it is also AGGRESSIVE.

My other option is to have the Genetic Testing anyway, because it really is good info to have. And have my MRI as scheduled on May 9. Ok, but that is 12 days away. And my next scheduled appt. with Dr. Chung is 16 days away. Then from there, I will schedule a surgery. Either a lumpectomy or a mastectomy. So lets add another week to that. Now remember, I have INVASIVE and AGGRESSIVE cancer. Dr. Chungs nurse said “two weeks isn’t enough time for it to spread, now maybe two months…..” OK, but how long has it been there before it was found? For all I know, today is the two month mark.

Dr. Chungs nurse, knowing that I am also a nurse, (oh…ok….after speaking to Dr. Chung I cried for a while, calmed down and then called her nurse) asked me to think of it clinically and not emotionally. But I can’t. I may be a nurse, but first and foremost, I am human. I am scared. Really scared. And all I really want is to live. 30 more years will be enough.

And Alan and I right now are both waiving our hands in the air and saying “Screw this, chop them off!”

And I still don’t know what Grade or Stage my cancer is. If I knew that I think it would help me make a decision.

But no matter what I do, lumpectomy, mastectomy, double mastectomy, I have no choice but to have chemotherapy.

I need Jane.

Hematology/Oncology

If you have been waiting to hear about today's appt. you will have to wait a little longer. I got my Wednesday's mixed up. the appt. is Wed. May 9.

Sorry about that, I've been a bit distracted lately

Support

Someone asked me yesterday “Leah, it’s only been a few days, why are you telling everyone about this already? I wouldn’t tell anyone!” My answer was this: When I told the few people closest to me the response was overwhelmingly positive. And so a told a few more people and got the same response. And then people I don’t even know reached out to me (on my request, thru mutual friends) and they were a wealth of info. And there is a line of survivors now standing behind me, more people I don’t know, willing to assist me in any way they can. So why not share this news? Perhaps someone out there has (or had) the exact same cancer I have, and wouldn’t I just love to talk to that person??

Did you know that while I go thru treatment there is a local group that will come to my home and clean it? I didn’t know that either. I will call on those people, but I admit, I feel sorry for them.

Of course, not all the responses I received were exactly what I wanted. Some folks are actually more emotional than I am. Some folks couldn’t stop texting, calling and emailing me, and if I didn’t respond quickly enough they would text again, email again, call again. And that was not helping. At all. I need to be strong for me, my husband and my daughter. I need to be strong to remain sane. I do not, and will not, need to be strong for you. Don’t get me wrong, I understand your emotions, if I were you and you were me I’d probably behave the same way.

I will allow you your tears, of course. You can hug me. I know you are sad for me, you feel helpless and you want to help me. You may even NEED to help me. And perhaps, even tho you know I have cancer, you haven’t seen me yet. So that first time that you do, cry if you must, and hug me too. Tell me how much it sucks and then PUT ON YOUR BIG GIRL BRA AND GET OVER IT!

Follow my lead please. Am I crying? If so, go ahead and join me. Have I asked you about you? If so then tell me about you.

Yesterday as I was walking to the bus stop a neighbor was driving down the road. As she approached me I saw her window coming down and thought “oh boy, how is this going to go?” I like this neighbor, I consider her a friend. I am very comfortable talking to her and I’m always happy to see her. We hang out as neighbors often do, in the back yard or on the sidewalk while the kids play. She is dear to me and I love her boldness, she makes me laugh. But we are not super close friends. And she got the “Dear Everyone” letter. And she emailed me, and texted me and offered me any assistance I would ask of her. So when she pulls over I immediately ask her about something fun that is happening in her sons life, I don’t think I even said “Hi”,  but I wanted to control the situation and she followed my lead. And we talked for about 7 minutes, till the bus got there, and my cancer was only briefly discussed.

AND THAT IS EXACTLY WHAT I NEED.

Here is a truth: This cancer won’t kill me, but it will kill a friendship if my friends start treating me differently. I am still the same. I am still sarcastic, I am still socially awkward, I still speak before I think, I still make jokes that my mom doesn’t think are funny. I am still me. Right now, I am not even sick!! Physically, I feel fine. Everything I could do a week ago, I can do today. Emotionally I am still a bit of a wreck, so if you want to help then just be you, and talk to me like I am the me I was last week. I love you too.

Let me tell you about my friend Mike. I have never met him. He doesn’t live too far away but our paths haven’t crossed. We have a bunch of friends in common and because of the power of Facebook we connected a while ago. He makes me laugh. He is sarcastic and speaks without thinking. He is a bit (pea)nuts. He just sent me an email that I am going to share with you. I hope it makes you laugh the way it made Alan and I laugh. This email represents the kind of support I also need. The laughter in the face of cancer:

I feel TOTALLY awkward now after reading your blog in it's entirety. I thought I would make a nice gesture to make you feel better so I looked at your profile pictures and saw that you have curly hair. Since I have straight hair on my head; I shaved off every curly hair I had on the rest of my body and put them in a bag to send you so that you could have a "curly haired " wig made if you needed it and then I see this Kimmi person has already offered you her hair. Now I am just plain embarrassed and to make matters worse, now my (pea)nuts itch! That's what I get for trying to be nice!!!

Plastic Surgery

So today I met with a Plastic Surgeon. On the off chance that I may need him to someday give me a new boob. Or new boobs. Whichever. Have you even been in a plastic surgeons’ office? I haven’t. I expected to be surrounded by a bunch of long legged, tight faced, raised eyebrows kind of girls. But instead what I saw was a bunch of middle aged men and one old woman. I don’t even want to know…

Dr. S. was super nice (and cute too ladies….). He wasn’t quite sure why I was there tho. As of now there is no reason to believe I will even need his services. Ok, to be honest I guess my chances of needing him are 50/50. But I suppose Dr. Chung just wants me to know all my options, which leads me to believe that when I see her again on May 11 I am going to have to make some hard choices. Fast.

So Dr. S showed me a slide show of reconstructed boobs. And told me there are two methods of reconstruction. The first is the expander/implant method. Kinda self explanatory, right? They remove the boob(s) then immediately insert an expander. Then they will periodically fill the expander with air until the skin is stretched enough to insert an implant.

The second method, while more time consuming, sounds more natural to me. It’s called DIEP Flap. I don’t remember what DIEP stands for. What that does is take skin, muscle and tissue from my abdomen and move it up to make boobs. Maybe I should say breasts here? I don’t know. My mind keeps saying boob job. Anyway….as it turns out, I only have enough excess tissue, skin and muscle from my abdomen to make one boob. Yep, ONE!! Cuz I’m skinny!! I offered him a bit of my thighs tho, but apparently that won’t work. Unfortunately for me tho, this means if I need a double mastectomy I will have to go with option #1.

Either way, somehow that makes no sense to me, I will still have a nipple. A reconstructed nipple (OMG, dad I am sooo sorry, your face must be bright red)

And, FYI, he did not feel sorry for me enough to throw a little free Botox my way. I tried.

Tomorrow I meet with Hematology/Oncology. Friday I meet with Genetics.

Sorry Mike, no boobie pictures. You are just (pea)nuts!!

Next week, life as normal.(?)

Tonight

Tonight when I told Michelle it was time for her to shower she asked me to join her. Which was weird because showering together stopped a long time ago when she began to notice the differences between her body and mine. But I agreed just to see if there was something deeper to her request.

There was.

She used that time in the shower to examine me. To feel for herself that there isn’t a bump to feel. To tell me that she almost cried today at school coming in from recess because she was worried about me. To tell me she wanted to talk to the guidance counselor today but she was unavailable. That she instead talked to her principal and he made her feel better. She asked me again if I was going to die. I told her that I didn’t think this cancer was going to kill me, but that we still needed more information. She asked if I would have my breast removed and I told her I would, if it would save my life.

Then I received an email from a “mom” friend. You know, the friend you make because your daughters are friends and luckily you get along with the mom? Anyway, at school Michelle talked to this little girl about me. And, in my opinion, this little girl is stronger than me. And a good choice was made by Michelle in talking to her. Michelle did not tell me about this conversation tho. And I doubt I will ask her about it. She is allowed to have her secrets, and I am glad she has a friend like this girl.

And Michelle’s BFF’s mom, Stacy, is also a great friend of mine. And Stacy talked to her daughter today about me. And we made plans for the weekend, and I know Michelle’s BFF will hug her, and cry with her if need be.

 Because that is what BFF’s do, right Paulette?

On top of all this, I have received an overwhelming amount of love and support today after my “Dear Everyone” letter. Thank you. I love you too.

Surgical Oncologist

So by now you have read my “Dear Everyone” letter, so this entry will be less factual and more emotional.

I’m sure by now you all have at some point in your life had the chance to consult with/meet a surgeon. Are they not the most non-personable persons? And I don’t mean that in a bad way, what I mean is this: they just know. They know what you are going to ask before you open your mouth. They can answer your every question while you just sit there. It’s what they do. And it’s what I have always expected of a good surgeon. It drives me insane, but I swear while in med school future surgeons take a class on how to be emotionless. Think of Dr. Yang on Grey’s Anatomy. She’s a robot. As all good surgeons should be.

But being there, being told that while yes, I have cancer, we do not need to rush. That getting all the needed info is the most important thing to do right now. And Alan and I are sitting there thinking “but this is me you’re talking about…everything should have been done yesterday!” But…my friend Lien put me in touch with someone who is going thru something similar, except she has DCIS, the cancer I was hoping to have. “The cancer I was hoping to have.”? Did I really just say that?? Anyway, turns out, waiting 5 weeks after diagnosis until surgery (of any kind) is normal. Normal. What the hell is normal about this??? I have a cancer that usually only attacks post menopausal women. Whatever….

Already the Plastic Surgeon has contacted me. I will see him this week. I could end up with a free boob job. And if for some reason I need a double mastectomy, I am coming back with a C cup….just saying.

This afternoon I went to a pub where my friend Kimi works. She is a certified CPR instructor, EMT and intern for a DA. She’s super cool. Anyway, I need my CPR renewed because even tho I have cancer, I am a nurse too and I need to do what I need to do. And don’t we all go to pubs to renew our CPR? So as I said, Kimi is super cool, from the moment I met her I knew that. She’s my kind of person and we hit it off when we met a year ago. But she is not a close friend. I sent my “Dear Everyone” letter and then went to see her, but she did not get that letter. So she was my guinea pig. I looked her in the eye and told her I had breast cancer. And she says “oh, you’ll be fine…my aunt went thru…..” and then she whips her hair out of its bun and lets that long thick, dirty blonde, almost down to her ass hair loose and says “I’m growing it to donate it”. I asked if I could have it, if need be and she said “yes”. And by the time I had gotten home she had already found out what wig place would do it. Would cut her hair, turn it into a wig, and save it for me.

So now Kimi is a close friend. And I can’t wait to take her out kayaking.

The Letter

Here is the very generic letter I just emailed.

Let me preface this email with an apology. I am sorry that I have to tell you the news you are about to read. I am sorry that I did not contact you directly, privately, to share this information with you. I ask that you try to understand my reason for sending an email. That you can respect the fact that emotionally I am unable to have this conversation over and over again with so many people.

On Friday, April 20 I was diagnosed with Invasive Ductal Carcinoma. Breast Cancer. It’s my right breast that has turned its back on me. As many of you know, I have had years of lumpy bumpy breasts. I have had mammograms and breast ultrasounds every 6 months for the past 2+ years. I have had 4 benign fibro adenomas removed. I have had 4 biopsies. I had 2 of those biopsies in the last 2 weeks. The second one came back as cancer.

I did not find a lump during a self breast exam. My last mammogram was free and clear. This cancer has been found early. Even knowing now that it is there, and knowing where it is (straight up 12 O’Clock), I still cannot feel it. Neither can anyone else.

Today Alan and I met with Dr. Chung, she is the head of surgical oncology at Lehigh Valley Hospital. We had hoped to leave with all the answers we wanted and a firm understanding of what is next. However, if you have ever been in, or know someone who has been in, a situation such as this, then you know that was an unrealistic expectation.

Here is what I know right now as fact. I had a mammogram that showed tiny salt sized microcalcifications on my right breast. There was no mass seen at that time. If you know anything about mammograms than you know that anything bad shows up as white colored. If you have dense breast tissue, that also shows up as white. I have dense breast tissue. So just because no mass was seen, doesn’t mean there isn’t one.

My next step is to have an MRI of both breasts. The MRI will be able to show if there is a mass and if there is cancer in other areas that was undetected in the mammogram. A physical check of all my surrounding lymph nodes today showed absolutely no swelling. My MRI is scheduled for May 7. It’s seem far away, I know, but there is a reason for that date and it has to do with my menstrual cycle and we really don’t need to go there, do we?

I am waiting for calls from: Medical Oncology. Plastic Surgery (don’t jump to conclusions here) and Cancer Risk and Genetic Testing. I need all these people to help me put all my ducks in a row. At first I declined the genetic testing…I mean, I already know I’m at risk for cancer, right? But they insisted based on the fact that most people who have Invasive Ductal Carcinoma (IDC) are post menopausal. Once again, I am a medical anomaly. Also, it will help determine my risk for ovararian  cancer, which is harder to detect.

After that…well…it’s a lot of if this, then that. And if that, then this. This is a process that I have to go through, one step at a time. And I will keep all of you updated through my blog:

www.onmywaytosurvivorhood.blogspot.com

Please feel free to contact me privately for any reason. All you Facebook users, please refrain from writing on my Facebook wall about this. I will eventually make a public announcement there too. All of you who know Nana, please don’t mention this to her, I will tell her at a later date.

Other than Nana, this is not a secret.

Alan, Michelle (yes, she knows) and I thank you in advance for all your well wishes and prayers.

Leah

From My Mom

 I guess I will soon find out the depth of my strength

Michelle

We told Michelle. You will be proud of me to know that I kept it together, at least for the most part. She was understandably confused, angry, sad. She pulled away from me at first. Then came close to me. Then pulled away. Then ducked when I reached for her. She cried. She asked me if I would die. She buried herself under her blanket and then left the room. She said she needed to be alone. She went into the study room and played her flutaphone, and sang. And read a book. I checked on her. Alan checked on her. And an hour later she came downstairs. Where she alternated between tears and Mario Kart. We promised her we would keep her informed. I promised her she could sleep with me tonight.

Then, I emailed her teacher. I dropped my cancer on her like a bomb. In hindsight I could have handled that better. I directed her to this blog, that so few people even know about yet. But I will do whatever I need to do to help Michelle, and I will rely on her teacher to assist me.

And now that Michelle knows, I feel stronger. Is that weird or normal? For Michelle I will keep it together. I have to. That’s my job and it’s very important.

Tomorrow morning I see Dr. C.

Tomorrow afternoon I go to a pub to meet a CPR teacher to renew my CPR.

Sounds to me like tomorrow is the first day of my new life. And I will have to drive.

48 Hours

48 hours has now past. My pity party has to end. I need to put on my big girl bra and get over myself.

The only problem with that is Michelle returns from grammy and grandpas house today. Actually, she is home, and gone again to a birthday party. She was home for about 30 minutes before Alan took her to the party.

And right around that 48 hour mark I lost it. I cried like I did on Friday morning when I was told that I had cancer. I cried so hard that Alan told me to take a Xanax and suck it up. Yep, that’s what he said. Does it sound a bit harsh? I needed to hear it. He has spent these past 48 hours being so strong. For me. I have not given him a chance to be sad yet. I have not comforted him at all. I have not allowed him to grieve, or process this. I haven’t allowed my parents to process it either. I made Alan take care of me. And I made my parents take care of Michelle. And I know I have every right to be a bit selfish right now, I know this. But I can’t help but feel slightly guilty over it.

However…it did take Alan over an hour this morning to run to Dunkin Donuts. He said he had to go to the ATM, and get gas in his car…..but I think he just needed some time to himself. He deserves that. I didn’t question him about it. His emotions are not worn on his sleeve, and I respect that.

And now that Michelle has left my parents house and they can begin to process this information. My heart is breaking for them. As a parent too I can empathize with how they are feeling.

Alan thought I should go to this birthday party too. Said it would be good for me to “get out”. But I don’t feel the same way. First, I have no desire to go anywhere….with the possible exception of Mexico…and secondly if I were to go out in public I would go somewhere where I would be surrounded by my closest friends and family. Not to where I am around a bunch of people who are barely more than acquaintances. Where I would have to smile and pretend that “Yeah, I had a nice weekend”, “I know, the weather was much better yesterday than I expected”.

Besides, my eyes are swollen and puffy. The skin under my eyes is dried and cracked, even a bit flakey. There is no amount of make-up in this world that can hide the truth, that I have cried long, hard and often these past 48 hours.

And…in a few hours Alan and Michelle will be home. And he and I together are going to tell Michelle that mommy has cancer.

Invasive

It’s this word “Invasive” that really bothers me. Does my cancer just have invasive properties? Or has in already begun its invasion? And where exactly does it want to invade? And most importantly, why? Why me?

Here is a truth….when I had the biopsy last week I talked in depth with the radiologist, his technician and her assistant. I pushed them all for details. I asked all those questions that some people wouldn’t ask because they figure they wouldn’t get an answer. I pushed them for answers I knew they weren’t allowed to give me….

And I walked out of there and mentally prepared myself to go back for the results and be told I had DCIS. Ductal Carcinoma In Sutu. Even tho I spent the days between biopsy and results high fiving my mom and Alan and saying “I’m going to be part of the 80% of women who get benign results, not part of the 20% who get DCIS results”, in my mind I was preparing myself for being told I had cancer.

 DCIS. NONINVASIVE.

And then I was told I have cancer. And all my preparation went out the window. That’s it. I have DCIS. And I lost it. I mean, really lost it. I shook and I cried and I probably cut off the circulation in Alans left hand. But no matter my state of mind, this Radiologist kept talking and I couldn’t hear a word she was saying until….

INVASIVE. What??? I remember saying that word out loud. Saying it as a question. She must have it wrong. I have DCIS and that is NOT INVASIVE. She must have me confused with someone else. She didn’t. And suddenly I lost it more, if that’s possible.

The Radiologist introduced me to Jane (as in Doe) who is apparently my new best friend. She is my Nurse Navigator and will hold my hand as I journey to “survivorhood” (that’s her word, not mine). She is my go-to person, my mediator. She gave me pamphlets and she offered me counseling, support groups, etc. Jane is petite, and pretty, and she has the kindest eyes I have ever seen. Jane is calm, and talks in a low voice, and allows me to cry uninterrupted before she continues talking. She is also my secretary. She made the appt with Dr. C. the oncologist for me. And she pushed Dr. C. to see me earlier than next Friday, which was the first appt they offered me. Jane is the reason I am being seen on Monday. Tomorrow. I heard her on the phone; she said “But Leah is only 39”.

So like I said, Jane is my new best friend.

And as much as I know I need her….I don’t want her. I don’t want what she represents. I have no room in my life for her. And somehow I need to find a way to accept her, to make room in my life for her, because I DO need her. I know that. I just wish she could have entered my life another way.

And while she talked to me, I wanted to leave. Leave the room. Leave the building. Leave her. And when she finally allowed me to go, she hugged me. And I apologized for being so rude, and I told her she had a horrible job. She smiled, forgave me, called me a few hours later to see if I needed to ask any questions, to tell me I could see Dr. C on Monday.

Yeah, I have a question. What is next?

Hawk Mountain

Last night my parents took my daughter for the weekend to give me time to adjust. Which I am so thankful for. I have awesome parents. I am blessed.

So Alan, my husband, who had plans for the day, cancelled his plans and suggested that when we woke up today we head over to Hawk Mountain. What a great idea. Usually, when he and I do something, whether alone or with other people or family, I make all the plans. I map out the route. I pack what will be needed. I firm up the plans with anyone else who may be going. But today, it was all him. Thankfully. Because for the past 29 hours since my diagnosis I have been unable to make a decision. I feel like right now I just don’t have any choices when it comes to my life. And I know that that isn’t true, but remember I am still within my allotted 48 hours of self pity.

I can make a yes or no decision…like, Alan asked me this morning if I wanted some eggs. That was an easy “no”. I am walking a thin line right now between vomiting and not vomiting…and eggs…ewww…But if you give me a choice, if you press me to make a decision, well…I just can’t do it.

Here are a few other things I am finding it impossible to do right now: Sleep. Be indoors. (I am typing this outside) Drive. Look someone in the eye. Not cry…really, the tears just spontaneously appear.

So Alan packed up all we would need and we left around 9 AM. He drove. He led. He handed me water before I asked for it. He even had a Crosby Stills and Nash CD in the car and ready to go. We hiked for miles, stopping at all the scenic overlooks. Saw multiple Turkey Vultures and not much else. The Lookout Trail. The Sunset Overlook. The North Overlook. The Bald Outlook. The Appalachian Outlook. The South Outlook. The Skyline Trail. The Golden Eagle Trail. The River of Rocks Trail. The Escarpment Trail. And back to The Lookout Trail. Before we left we got a family membership. It’s good for a year.

That’s something to look forward too. A year.

Tonight, my friend wants to see me. I understand that, I would want to see her too if the situation was reversed. She would do and go anywhere I suggested. Except I can’t make a decision. So Alan made those plans for me too. And I don’t have to drive.

Well, I did tell her I wanted to go back to Mexico with her, but really, that’s about the only choice I feel capable of making right now.

Unrealistic choices.

But I didn’t CHOOSE cancer. It chose me. So in my mind….right now….I have lost control.

And since I am still well within my 48 hours of self pity, I CHOOSE to accept that loss of control.

Which ultimately, is another unrealistic choice.

2AM Ramblings

So this may be one of those rambling its 2AMandIcan’tsleep type of entries that I honestly hope I don’t have to do too often. I really thought Xanax 0.5mg would have done the trick. I guess not.

So here is the purpose of this blog. You see, I like to think of myself as a real popular kind of person, and I don’t want to have daily conversations about how I am doing, especially with multiple people. Or whats going on next. Or what the Oncologist said. So I am going to direct people here.

Today, right now, only a handful of people know. And they are sad. They feel helpless. They want to help. And what do I need from them? Right now? Nothing. Love, of course, and prayers. But they want to do more for me. Of course they do. I would feel the same way if the shoe was on the other foot……or perhaps I should say…..if the breast was on the other chest wall.

My mother put it best when she said…..well….I can’t print the words she said.

Runner up was my brother. He said “Well, this just suck”.

On Monday I meet with the Oncologist. Dr. C. is the head of the Surgical Oncology Dept at the local hospital. From there I should know more than just that I have Invasive Ductile Carcinoma. After that I am going to contact the other people in my life and share with them this terrible news. And selfishly, I am going to do it by email. I can’t fathom having this conversation again and again and again and again. After that will come the big FaceBook announcement. I plan to make only two cancer related announcements on FaceBook. One will be that I have Cancer. The other will be that I beat Cancer. Guess I’m about to find out who my friends really are. Because they way I see it, if I tell all my 100 friends on FB that I have cancer and they don’t ALL contact me privately to express their disbelief and outrage about it, they are not my friend. But FB will not be my ranting outlet. That will be here.

And rant I shall….

I might cry too. Definitely right now I am. But I have allowed myself a 48 hour pity party. After that I will pull myself together. Really. Honest. I’m gonna try anyway. You can help tho by not making those sad faces when you see me. By not hugging me more than you usually do. Which, for some of you means, don’t hug me.

Most likely I will return to my usual, snarky and sarcastic self. I will make jokes about it. And you will not laugh at them.

But I'm not going to die. As my mom said....and this I can repeat....I have a long life ahead of me, but first I'm gonna have a real shitty summer.

Today

I've always wanted to blog, but knew I needed a platform and I couldn't figure out what to write about.

Until today.

Today:
I am 39
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

Today:
My life has been drastically altered.
I was diagnosed with Breast Cancer.
Invasive Ductal Carcinoma

A year from now:
I will be a survivor

And, if you choose to, you can come here and read about my journey, it's gonna be a hell of a ride.

I don't know much today

I know:
I will soon have an MRI
I will soon meet with a Breast Cancer Oncologist
I will soon have a lumpectomy
I will soon have my lymph nodes mapped...but I don't really understand what that is....
I will soon have to explain this to my 7 year old daughter