I'm Ready

My greatest hope for today is that this cancer is confined to my breasts. If it is, then after today the cancer will be gone...and all the other stuff I have to do? Just precautionary.

"Feelings Aren't Wrong, They Just Are"

Ok, I am really trying to stay occupied these last days before my surgery. But man, it is hard. I keep thinking “I should….balance my check book, do the laundry, change the sheets, mop the floors, clean the bathroom….” But once I start doing one of those things..I stop and hit the couch. This waiting is the worse. Wait wait wait. And then, once surgery is done it’s wait wait wait for the pathology report, then wait wait wait for chemo to start, then wait wait wait to be told I am NED. I will have a preliminary pathology report by the time I wake up from surgery…but it will be just that…preliminary…so I can’t put too much faith in it. A little maybe, but not much.

And my phone keeps ringing, and I keep ignoring it. Is that rude? I have nothing to say. I don’t need anything right now unless you can perform a miracle. I don’t want to talk about it. And I have nothing else to talk about. I listen to the messages being left tho, or read the text or email, and I smile and say a silent “thank you” to you, but most likely I won’t respond. Don’t take offense. I am entitled to my feelings, even if they are different from yours. But what I need is most likely very different then what you may think I need.

That being said…can I go one step further? One step that is possibly ruder? Don’t visit me in the hospital. I know that this surgery is my second step to becoming a true survivor (the first was accepting the battle) but still, it’s not like the last time I was in the hospital. That time I had a beautiful baby to show off. This time I will be in pain. Doped up. Sad. Boobless. And I don’t want visitors. I just want to spend my time in the hospital recovering, so that I can come home on Friday as planned, and not have to spend another night.

I realize that some folks are having a hard time understanding where I am coming from. And trust me, I don’t mean to be rude. But this is my battle and I will battle it my way. I have a great support system, I know that. Many people willing to help, many people helping, many people going above and beyond and I appreciate it. I do. Really I do. You have no idea how much.

The Long Weekend

Every day is a race for me to find something to do, enough somethings to do, to keep my mind occupied and my body in motion. The more I do, the busier I am, the less time I have to think about myself. With that in mind tho….I don’t want to really go anywhere. I mean, nowhere like the mall, or out to eat or something like that. Nowhere that I will be surrounded by people I don’t know. Happy bubbly people piss me off.

So as I entered this long weekend I began to worry. What am I going to do? How will I occupy myself and my family? It’s easy when Alan is working and Michelle and Mary are at school. Week days are easy. But weekends? Especially long weekends with everyone home? Oh boy, now what?

But lucky for me this weekend has been busy. A birthday party and a BBQ on Sat. And when I left the BBQ, Michelle stayed for a sleepover with her BFF. She stayed there for almost 24 hours. Which gave both her and me some much needed time away from each other.

And it gave me Sunday morning free. But what to do?? It’s kinda cloudy, I hear thunder and it looks like it might rain at any second. Oh! I know! Lets go kayaking!! Yep, Jill and Susie devised a way for me to get in my yak this season. Sunday morning at 9, weather be dammed. So even tho it rained a little bit when we first got on the Lehigh River we had a wonderful trip. I had truly thought this summer season would pass me by without once getting on the river. But thanks to these two wonderful ladies I was able to enjoy my favorite past time once before all my treatments start. My smile Sunday morning was huge, and real. Thank you Susie and Jill (+1). I really appreciate it. So much. I love you.

And Sunday night a few good friends stopped by to just hang out and eat chili with me. I know, chili is a weird thing to eat on Memorial Day Weekend, but I make good chili and I wanted to do something nice for my friends. So mom, Paulette, Stacy and Lynn all came by to hang out, eat and chat. It was a good end to a good day.

And today we will BBQ. Just the family. And it will be nice. A nice way to end my last weekend as the me I am. Before I become the me that fought hard and won my battle against breast cancer.

Ductal Carcinoma In Sutu

Today I received a written report of my genetic testing. In it I see that besides have Invasive Ductal Carcinoma I also have Ductal Carcinoma In Sutu. Remember I talked about that before? The type of cancer I was hoping I would have? Guess I do have it…kind of perturbed that I didn’t know it. So I went and checked my pathology reports (doesn’t everyone get copies of those things?) and didn’t see it on there. So I checked again, reading each and every big Latin word until…there it was. DCIS.

Wow. 2 different cancers at the same time in the same breast AND just for added pleasure, I am HER2+++. Why, it’s my lucky freaking day, isn’t it?

And some people think I am going overboard by having a bilateral mastectomy. Hmmmphhh.

May 31 can’t come soon enough. I’m over this shit.

What To Expect When You Are Expecting A Mastectomy

Yep. There is a class for that. Someday maybe an app for that? An approx 2 hour class that lets you know what to expect during and after a (b/l) mastectomy. I didn’t want to go…for the simple reason that it is just so unreal. But Jane, remember Jane? My new BFF? She really encouraged me to attend so I grabbed my mom and off we went.

Luckily, there was only one other woman there (along with her husband) because I really didn’t like the thought of sitting around with a bunch of women in a circle discussing our upcoming mastectomies. Kind  of thought it would be like a “Hi, my name is Leah and I have breast cancer” kind of scenario. The other woman? Her surgery is tomorrow. I am holding her close to my heart tonight.

So anyway, it was them, me and mom, Jane, a breast cancer survivor and briefly a woman who I will see in about six weeks who will check me for lymphedema. Have I mentioned that yet? No? Well, not going to now either. That’s just another one of those “if this then that” things. I’ll talk about it if I get it.

So….from what I understand, during the surgery Dr. C (surgical oncologist, remember?) will first and foremost do a sentinel lymph node study. That is kind of hard to explain but a radioactive isotope dye will be injected into my right breast (ok, nipple really ) the day before surgery. That dye will show her my sentinel lymph nodes and they will be removed and immediately checked for cancer cells. If cancer cells are found she will remove some more nodes…and on and on till they find a node without cancer. (do I have this right mom?) So, anywhere from 2 to say….17ish or more lymph nodes could be removed. Fun huh? Then she will remove the whole right breast and when she moves over to the left breast (no node stuff there) Dr. S. will move in (plastic surgeon) and place the expander under my pectoral muscle. Then he will do the same to the left. A port will be inserted under my collar bone (for chemo) and I will have 2 drains, one on either side of my torso, like…in the armpit area I think. And then I will wake up, about 5 hours later. Boobless. Easy peasy. And settle in for an overnight stay.

The drains won’t be as bad as I have thought they would be. I think I can handle the care of them. But still…the thought of emptying them out…ewww….They will stay in till I am emptying less then 30cc/24 hrs. Usually about 10 to 14 days. And, during those days, I will not be able to raise my arms above my head. No more then 90*.

The list of restrictions is endless…really. I’m not going to get into it. And, since every week after surgery I will see Dr. S. to get my expanders expanded he will be in charge of all those restrictions. I will only have one post op visit with Dr. C. I think that is weird, but whatever. Anyway, I hope that it won’t take too long to lift the restrictions once the drains come out. I can’t help but wonder how long till I can lift 50 pounds. This, surprisingly, is exactly how much Michelle weighs.

I will be sent home with the area of my body that use to be breasts glued and steri-stripped. No bandages at all. Which seems weird, I know, but there is one very good thing about that: I can shower. And I checked, I can reach my head if I just lower it a little and raise my arms 90*.

And for added comfort I was sent home with these nice little fabric bags that I can tie around my neck and put my drains in. For the days when I don’t feel like wearing my cami with the drain holders and fake boobs already attached.

It would be hard for me to believe all this stuff if it weren’t happening to me.

MUGA Scan

So far the easiest thing I have had to do in my battle to beat breast cancer is have the MUGA Scan. MUGA stands for Multiple Gated Acquisition. What this test does is measure the ejection fraction of the left ventricle. Accurately. It was like they took a moving picture of my heart as the left ventricle pumped out the blood to the rest of my body. The left ventricular ejection fraction (LVEF) is an excellent measure of overall cardiac function. The ejection fraction is simply the proportion of blood that is expelled from the ventricle with each heart beat. So, for instance, if the left ventricle ejects 60% of its blood volume with each beat, the LVEF is 0.6. (A normal LVEF is 0.5 or greater.)

It was a long test, which was fine as it allowed me to nap. And I really needed that nap yesterday.

This test was needed and will be performed 4 or 5 more times over the next year because the Herceptin I need to take to kill any stray HER2+ cells left in my body after the b/l mastectomy can be toxic to my heart. Also, one of the two chemo cocktails I will end up taking would also be toxic to the heart muscles. So yesterday’s MUGA scan was the baseline scan, the rest will be to monitor. And while I really don’t like the idea of damaging my heart, it is a risk I will take. And maybe in 15 or so cancer free years I will have troubles with my heart. But the benefits of the Herceptin and the chemo cocktail outweigh the risk factors. Besides, my heart is fine. I asked the technician to tell me if she saw that my heart was broken, or if there was a chunk of lead in there and she assured me it is fine. I will find out soon enough what my EF is. I could probably call my oncologist today for those results. And knowing me, I will call him.

So anyway, what they did was inject something called PYP into the vein of my left arm. PYP would then go and attach itself to my red blood cells (RBC). And then I waited 30 minutes. After 30 minutes they injected a radioactive die called TcOu (Technetium 99) into a vein on my right arm (so glad I have good veins or they would have had to insert an IV) which then connected to the PYP that had attached itself to the RBC and lit it all up. So….RBC>PYP>TcOu.

And then I laid down for approx 30 minutes and napped while a scanner moved above me to take moving pictures of my heart at work. Pretty cool, huh? If I could have seen those pictures being taken I wouldn’t have napped. But the monitor was behind me, so I napped.

Yay!! I napped.

And I slept well last night. I do love the Ativan. And this morning I will have breakfast with Pam. A weekly date we have had for the past school year that we have skipped for a few weeks.

Breakfast with Pam=normal

More Mid Day Ramblings

I have been amazed at how many times I have heard from folks after starting this blog who say “Leah, your blog has inspired me too….”, “Leah, your honesty and humor has helped me too….”, “Leah, after reading your blog I realized that…”

Really? Because I re-read this blog and think “Leah, you are a wreck. Your emotions are all over the place. How can anyone read this?”

But I am glad to have helped you. It was unintentional but it does my heart good to know that what I am going thru has helped you go thru something. Or realize something. Or be inspired to do something. For me tho, truly, this blog started out as a way to keep multiple people informed and turned into the biggest cathartic life saver. I feel free when I type. I just wish I had something else to discuss.

Last night was a real bad night. Kind of like the nights I had the first week after this diagnosis. There were a lot of things on my mind. There are always a lot of things on my mind, but last night it was just worse.

During our trip to WV a lot of pictures were taken. And two pics that my friend Susie took I just can’t get out of my head. If you are a facebook friend of mine then you have seen these pictures. The first is a close up shot of me hugging Michelle. All you can see of Michelle is the back of her head. The second picture is Alan, Michelle and I. I’m sitting on Alan’s lap and Michelle is sitting on mine. I remember waiting for Susie to take the shots. In my mind I am saying “OK, smile Leah. You are somewhere beautiful surrounded by friends who love you and the best of Mother Nature.” And I thought I had pulled it off….I thought I had pulled off a happy, smiley face. But seeing the pictures, all I see is sadness in my eyes. A smile too…but my eyes just take over. Susie says it’s not a sadness as much as it is an intense look that leads the looker directly to the core of my soul. Alan says “Yes, that is the look people see when they look at you.”

I had no idea.

Late yesterday afternoon I talked to a good friend of mine. His sister was just diagnosed with breast cancer. God dam…it’s a freaking epidemic! I offered my assistance, in any way I could for his sister. And I told him that the folks that help me the most are the strangers that have worn (or still wear) my shoes. I don’t know if I will ever hear from her, but she is also dominating my thoughts. My heart is breaking for her and her family.

And then last night we took Michelle to her therapist. I have decided against discussing what happens during those meetings, Michelle deserves her privacy, but I can say it is a very emotional time for all of us. And at one point I needed to just get up and leave the room. I had a small meltdown and then pulled it together and was able to go back and join the family therapy discussion.

But by 9 PM last night my small meltdown swelled into a tsunami of emotion. I was raging. I wanted to call all the folks who have been getting on my nerves and tell them to get the hell out of my life. And at the same time I didn’t want to talk to anyone. I sent Alan and Michelle up to bed so that I could be alone. And I raged. And raged. Things were thrown, things we punched, hard alcohol was drunk directly from the bottle. I wanted out. OUT. Out of my home, out of my skin, out of me….OUT. But there is no way out. I know that. But that doesn’t mean I don’t want OUT. Just out. Please. Took me about an hour and a half to get thru it. But get thru it I did. And I’m glad I got thru it. And I’m glad I didn’t call anyone. And I’m glad no one called me. Because I didn’t want to talk to you. Well, maybe you Melanie.  And I have high hopes for today. Mostly because I have no energy today for any rage.  I will be perfectly happy today sitting on the couch.

Until it’s time to go for my MUGA scan. Got to check the ol’ ticker, make sure it can handle the toxins that will soon be pumped into my body.

Dam…

West Virginia, Mountain Mamma (don't want to go home)

I just returned home from a long weekend at Seneca Rocks WV. If you have never been there, I suggest you go. Even if you are not a rock climber. The area is beautiful. Stunning. Breath-taking. Awe-inspiring. Twice before I had taken a day trip to WV, once to climb that 72 foot pillar in the Potomac River and once to have my first (and last) experience at spelunking. But on those two trips, I can assure you, the scenery wasn’t as nice.

Michelle, Alan and I went down there with 10 other people, of those 10, I know 7 well. And on my other two trips down to WV I was with some, if not all, of these people. The other two trips I made down there were high adventure trips for me. This time, for me at least, it was a low adventure trip. So on those other two trips I had to trust not only my ability to do what I went down there to do, I also had to trust the people I was with. I had to trust that they would keep me safe, that they would check my ropes and my knots, that they would prevent me from stepping over the ledge if I wasn’t properly secured. Both those times I had thought there can’t be a scarier ledge to be on.

I have trusted these people with my life and my safety on many occasions. I have trusted them with the lives and the safety of Alan and Michelle too, many times.

But since this nasty diagnosis I had only seen one of them. I had talked to the others, or received emails from them, but I hadn’t seen them. And even tho we were all in the same town at that same time I didn’t really see much of them as we were all busy doing our own things. Until Saturday night. Because that is the night I planned a BBQ. I planned it. It was my idea, everyone thought it was a good idea, so it happened.

But about 30 min. before everyone arrived at our cottage, I found myself back on a ledge, but unlike the other ledges I find myself on with this group, I was not attached to a rope. So I spent a few minutes alone with Alan, I told him I didn’t know how to behave that evening. That I wanted to go home, that I just couldn’t be around so many people. Even tho I love these people, and they love me, at that moment I just wanted to go. Because I always feel like there is a huge assed elephant standing between me and whoever I am talking too. I hate that feeling, but I can’t avoid it. And I don’t have much else to talk about these days…..goes right back to that “how are you” question. Seriously, that question stumps me.

And after talking with Alan I called Melanie. I have written about her before. She is the local friend of a friend that is going to the MD appt with me this week. She knew exactly how I felt. In her words “it felt like everyone was looking at my boobs.” Yep, that’s it exactly. Everyone is looking at my boobs. Even if they are not, in my mind they are.

And most likely, the next time I see these people, I won’t have boobs. Or I will have fake ones. Either way, I think I will still feel like everyone is looking at them. Or the place where they use to be. Or whatever. However you want to say it.

Because two weeks from now, I won’t have boobs. No boobs. Just some saggy skin, 2 drains and an IV port below my collarbone. For chemo. Oh. My. God. Is this really happening to me? Really?? REALLY???

But, on a good note, the BBQ went well. My friends are awesome people. They love me, I love them and we all had a real good time. So much food to eat, beer to drink, funny stories being told. It was normal for a while there. I felt normal. Normal. It was such a nice feeling. And I wish I was still there with them, sitting around a fire pit, being normal.

 I did do my best to avoid a lot of hugging tho. Because nice long hugs, like doctor offices, make me cry. And these folks are good huggers.  I am glad I got to see them, I am glad I got to be “normal” with them. Especially since they are wingnuts…some of the most un-normal people I know. I love you guys and ladies!! Thank you for my last hoo-rah before treatment. I can’t wait for next years trip. I send you all the hug I was unable to give you.

Shopping

Today I met my mom at Kohl’s to do a little shopping. We were both on a mission. She needed some nice summer T-Shirts and I needed some short sleeve button down shirts for after my surgery. You see, I was told that button down shirts will come in handy after my surgery, to avoid having to raise my arms up over my head. Makes sense, right?

Only problem is the short sleeved button down shirts for women I saw and tried on were made for style, not comfort. I mean, I couldn’t even use my right hand to scratch my left shoulder with one of them on. And I am not built like a linebacker, they are just not comfortable. And since in my normal life I put comfort ahead of fashion why wouldn’t I do that post op too? So I moved on to the mens department.

Saw a few nice Chap shirts. They fit. I could scratch my shoulders and all. But really? $25 per shirt. How many do I need? 2? 3? Maybe $75 spent on shirts I DON’T WANT. On shirts I resent needing?? No thanks. I couldn’t do it. I almost cried. So I wandered back over to the womens dept to critique my moms choices of shirts.

Besides, tomorrow I am being measured for these little cami shirts that have built in boobs and pouches for my drains. Forgive me if I am mistaken, but don’t you put on a cami over your head? So if I can wear that post op, then why do I need a button down on top of it?

Just doesn’t make sense to me. At all.

So I just left. And went and got my eyebrows waxed.

Which seems kind of redundant, doesn’t it??

Gonna touch up my grey roots again soon too.

Thanking My Boobs?

Today I was responding to an email my aunt sent me, and as I typed I was hit like a ton of bricks by something I had written. I will copy and paste it here:

“Thank you for that info., I have never doubted nor questioned my decision to have a b/l mastectomy. Other people however...well....i can tell they think I'm going overboard. Don't care tho, these are my boobs so it's my choice.

I'm very anxious to be rid of them. They have been nothing but trouble for years. So, I guess I should actually thank them, if they hadn't been such trouble then I probably still wouldn't have had my first mammogram. And I think this last one was my 5th.”

Now wait a minute…did I actually say that?

I'm very anxious to be rid of them. They have been nothing but trouble for years. So, I guess I should actually thank them, if they hadn't been such trouble then I probably still wouldn't have had my first mammogram. And I think this last one was my 5th.”

Again, let me repeat part of this:

I guess I should actually thank them

Unbelievable.

Thanking my boobs for causing me trouble for so many years.

But if they hadn’t, and since this is not a palpable tumor I might just being going thru the summer without knowing I have a breast cancer.

And then what would next summer be like?

Happy (?) Mothers Day

I hope you all had a good Mothers Day. I did. Really, I did.

But it sucked too

I couldn’t help but sit at the dinner table, looking at my family, and contemplate time. There I was with my husband, my daughter, my step daughter, my mom, my dad and my nana and all I could think was how much time do we all have left? Nana is getting old. My folks are getting older. We have all already learned from Mary that something horrible can happen at any unexpected moment. And I have cancer. So how much time do we have?

The other day when Tyler was over we googled the stages of grief. Depending on which website you look at there are either 5 or 7 stages. We looked at the 5 stages. First was denial and isolation. Then anger. Then bargaining, depression and acceptance.

Ok. I never denied. But I did isolate. Still am as much as I can. Anger??? Oh yeah, sooo pissed. Bargaining? What chips do I have to bargain with? Depression? Could happen, really it could, I can see it happening. And acceptance. I have accepted this shitty fate of mine, I don’t like it, but I accept it. What choice do I have? None, except denial. And then I would die, so that is not an option.

But I think now I was wrong about bargaining. Honestly, that’s something I’ve been trying to do lately. Like, if I can just have 40 more mother days I will….if I can live long enough to see my grandchildren I will….if I can get thru chemo without getting really sick, or gaining 45 steroid pounds I will….if Michelle will cheer up I will….well, you get the idea.

But what about guilt? I’m 50% Italian and my mom is, well, she is my mom. And I know guilt. Boy, do I know guilt. And I have lots of it. Guilt that I have to put my family and friends thru such turmoil. Guilt that people are worrying about me. Guilt that Michelle is so sad. Guilt Guilt Guilt. Guilt that so many people are helping me and I will never be able to repay them. And if you look up the 7 Stages of Grief you will find that guilt is one of them. And that makes sense. Because how can you go thru something like this without some guilt?

So last night I reached out to a friend of a friend. A woman I don’t know who reached out to me last week. A woman who is a breast cancer survivor. A woman whose cancer was different but whose treatments are similar. She talked me down off my ledge. She said all the right things, she made me laugh and she waited patiently while I cried.

And after I got off the phone with her, something unreal hit me like a ton of bricks. There I was, standing on the ledge, unable to get control of myself and so I reached out. I reached out to a woman I don’t know. Not Alan. Not my mom. Not a friend. A woman I don’t know. Because, and this is important, she gets it. She “gets me” right now in a way that no one else can. Because she has stood on the very same ledge before. She understands the emotions. The anger. The guilt. The everything in way that even the people closest to me can’t.

And she offered to go to an MD appt. with me next week. A stranger offered to go to an MD appt. with me. That is an offer I would have refused from some of the people I know. Weird, huh? I accepted her offer tho.

And there is also another stranger that has reached out to me. A woman who is HER+ like me. A woman who is 18 months ahead of me on her treatments. Yep. 18 months. Go figure. This woman gets me too. Her emails are full of truths, and humor. She tells me it’s ok to be selfish. It’s ok to remove myself from situations or places when I feel uncomfortable. She tells me it’s ok to remove myself from people who appear uncomfortable around me. She told me that everything I feel, every emotion I have, is ok.

These two woman, these two strangers….wow….I am so glad they found me

May 11, 2012

Every journey, like every book, has a beginning, a middle and an end. So I can’t help but wonder, when did this journey begin for me? April 20 when I got my diagnosis? April 17 when I had my biopsy? April 10 when I had my last mammogram? Perhaps my journey began 9 or so years ago with one tiny little cell that decided to rebel. I may never know where the beginning was.

But I feel like the beginning is now. Right now. Not yesterday. Today. And the beginning is going to last just one day. Today. The end will be the day I am told I am NED. No Evidence Of Disease. And everything between this first day and that last day is the middle. Everything that happened up until today has been the prequel. And I sure as hell hope that once I reach the end there is not a sequel.

Because today all my ducks lined up. They are all in a row. All the necessary doctors have been met with (with the exception of anesthesia). All decisions have been made. All consent forms have been signed. Today, things have begun to move forward. There are still things to find out, of course….the pathology of my cancer, what chemo to take and many, many more things…..But today, today the chips fell into place. Oh thankfully, the chips have fallen into place.

I will be having a bilateral mastectomy on May 31.

And tonight I will sleep.

The Core Group

Like most women I have a core group of friends. Four women who came into my life over the years and each enrich my world in their own unique way. These women are all quite different from each other and they don’t all know each other. But they each serve a purpose in my life that is unique to them. Each one of them does something for me that no one else could. I love these women, and you would too if you knew them. I want to share them with you, in the order that they came into my life.

Paulette. She didn’t like me when she first met me. She thinks she had a valid reason for that but I think she is off her rocker. Well, ok, maybe her reason was valid. Maybe. But over the course of a year a friendship blossomed and she is too wonderful for words. She just gets me. Besides my family, she was the first person I called with this news. And she was the first non family member to see me. She is tough. Real tough. Like, Tough Mudder tough. And she has my back. At all times. Which is good, because if she is behind me then she can’t get lost. She is my sister from another mother. Michelle calls her “Auntie Paulette.” You could all benefit from a little Paulette in your lives.

Pam. We moved into the same neighborhood at the same time. I saw her out walking with a little girl in a stroller about Michelle’s age the second summer we were here. Pam is a lot quieter than I, more reserved. I kind of forced myself on her so that her daughter and my daughter could play. The girls developed a friendship and so did Pam and I. We are each others go to person. Need an egg? Call each other. Need a last minute babysitter? Call each other. Breakfast once a week? That’s us. The friendship is easy and I think she enjoys my sarcasm as much as I enjoy hers. I can sit for hours with Pam in complete silence and yet hear so much. If she ever moved I wouldn’t be able to stop the tears. I am her emergency contact person on all her kids forms. How cool is that? She doesn’t even ask anymore, I just know my name is there.

Stacey. I love the way this woman came into my life. My daughter and her daughter developed a friendship during their preschool years. A few play dates later Stacey and I became friends too. Stacey always smiles, even when she doesn’t want too. She’s the friend who always knows what’s what. She speaks her mind and tells it like it is. The girls’ monthly sleepovers are a play date for the whole family as we all get along so well. I trust her explicitly with the care of my child and she trusts me with the care of hers. I look at her daughter as an extension of Michelle. They, like their mothers, just get each other. And the friendship is easy, unforced, uncomplicated. I can always count on her for a laugh.

Val. Val and I met because we have a fun hobby in common. She is my “lets go play in the woods” friend. If I need to hike, I call her. A walk along the canal? Val is my girl. Nowhere to go on Thanksgiving? Lets join Val and her huge family at her table. If I need someone to play the devils advocate, Val is the person I turn too. She can always see the other side, see things I can’t see. I think it’s her social worker background that makes her so grounded, so fair. Sometimes it’s frustrating to me when I am upset over something and she shows me the other side. She is often right. But that is what I love about her. She isn’t afraid to show me when I am wrong.

And during this time in my life they are right where I need them. They are there. And I know it. And they make me strong. They don’t smother me with tears, they don’t call daily, they don’t interrupt me when I want to talk and they understand when I don’t. If they ask how I am doing and I say “fine” they don’t question me further. Because they get me. And I get them. And sometimes, with friends like this you just don’t need to talk. They treat me like I am me. And they still share with me the frustrations and problems in their own lives.

I could blabber on and on with countless stories of these women. The good, the bad and the ugly. But I won’t. It’s enough for me to just share this little piece of non cancer related info with you. I hope you all have a Paulette, a Pam, a Stacey and a Val in your life. Because you can’t have mine.

I am so blessed to have these women in my life. And so many other women too. You give me strength and courage and laughs. And I thank you.

Genetic Results

If you missed my post regarding Genetic Testing go back a bit and find it. There is a lot of info there and so there is no need to repeat myself.

I DO NOT HAVE THE GENETIC DEFORMITY KNOWN AS BRCA+!!!

Hematology/Oncology

Yesterday I met with Dr. Sh. He is my chemo guy. Nice guy. Young. Handsome. Smart. Calm. All the things I want in a person who is going to fill my body up with poison.

Yesterday was not that first time I walked into a cancer center but it was the first time it really hit me that I was walking into a cancer center. There was a bald headed woman there. And it stopped me cold. I probably stood there for 2 seconds but it felt much longer. And all I could think was “how did I get here?” His office is the place where my chemo will be administered. My chemo. Into a port that will be surgically placed below my collarbone on the day of my b/l mastectomy and will stay there until my chemo is done. Oh my….sigh….

Anyway, until the pathology report is back from my b/l mastectomy I won’t know what my exact cocktail of chemo drugs will be. It will be one of two tho, that I do know. So I’m not going to get into it. I could fill a page with the “if this then that” scenario but I’m not going to. And it will take about 2 weeks after surgery till I know which cocktail is mine, so you are just going to have to wait right along with me until I tell you about it. Waiting. Sucks, doesn’t it?

But, to the best of my understanding, this is what I do know. Because of my HER2+ (actually, the correct way to write that is HER2+++) status I will take Herceptin. This medicine is not chemo. It is a drug that specifically targets the growth properties of the HER2+ to keep the cancer from spreading (I hate to say metastasizing) throughout my body. There are studies on this drug going on to see if it can be used alone, but the studies are ongoing and so it must be used in conjunction with chemo. If I understood him correctly they will flood my body with Herceptin during each chemo treatment. Once chemo is done I will continue the Herceptin IV until I have had a years supply of it. My port will come out tho after the chemo is done.

I will take Tamoxifen for five years. I don’t remember if I start that before chemo, during or after. I will take this because of my mild ER+ status. That’s ER for estrogen. I wrote about that before so go back and find it if you missed it. Wikipedia explains it best: tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked. Got it?

Before, three weeks after chemo starts and every three months for a year I will have blood work done. And I will have something called a MUGA test. Not exactly sure what that is yet but I know it’s some kind of heart test.

I will not be allowed to have my reconstructive surgery until I am completely done with chemo. No one has told me that I need radiation treatments but if it does come to that I will not be able to do the reconstruction surgery until after that too.

There is more info I received, and more info I need to obtain, but I’m not going to discuss it yet because again, it’s a lot of “if this then that.” And I don’t want to talk about it.

The worse news I got yesterday was that because my chemo will significantly reduce my immune system and thus increase my risk of infections, Dr. Sh strongly recommends that I do not go into lakes, rivers and oceans because of the bacteria that float around in there.

Bummer

Control Issues

Here is something many of you may know about me. I am the kind of person who wants what she wants when she wants it with no time to wait. If you say we are leaving at 5, we had best leave at 5. I would rather be 15 minutes early and wait for you then be 2 minutes late and have you waiting for me. I will tell Alan we have to leave the house at 3:30 when we really don’t have to leave till 3:45 just so I can be sure he will be ready.

I am impatient. And I have control issues. It’s true. I admit it. Normally I wouldn’t admit it, but I will now. And I like to worry. A lot. Keeps me on my toes. And there is so much to worry about, all the time. Not just right now. Always. Never once in my 39 years have I not had an opportunity to worry about something.

And so now I have this cancer and nothing is being done according to my time table. And I get it. I do. There is info to be gathered, schedules to coordinate, doctors to consult with. Yadda yadda yadda. Poor Jane, once I found my voice she came to know the real me quite quickly. “When?” That is what I ask her every time we speak. As if she has that answer and is just being a big ol’ meanie and not telling me. Poor Jane, who I call while watching a DVR’d episode of Grey’s Anatomy that I have to put on pause because something happened on the show that worried me. Poor Jane, who has to hear me say “no” every time she asked “did you read that pamphlet I gave you about…”

I read them all in the past 24 hours Jane. I did. I may not retain all the info. But I read them. And now I have about 2000 more questions…

But anyway…about this impatience and these control issues. And the side note of worrying. I can be impatient all I want with regards to this cancer. It won’t help me, no one is rushing just because I say they should. But they should. Things should move faster. You know what is worse than finding out you have breast cancer? Waiting for it to be treated. Good Grief. And I read that pamphlet you gave me Jane, the one where it said breast cancer starts out as one tiny little cell, that it can take that cell 9 years to reach the size of 1cm. 11 years until it’s palpable to the touch. So in my estimation this has been brewing for 10 years in me. Because no matter how hard I try, and I try often, I can’t feel it. So get it out already.

And I have no control now. None. I had only one choice to make: lumpectomy vs mastectomy vs double mastectomy. The rest of the stuff that is needed to treat and kill and get rid of this cancer is just that. Needed. So what choice do I have? None.

And worry? Puh-leeze…..

But, it’s the only thing I worry about now. This cancer, its treatment and its effect on my family. All that other stuff I use to worry about? Not worth it. Not worth it at all.

Which makes passing 18 wheelers on Rt. 76 much easier.

The Bad. The Worse. The Good.

So Francine didn’t make it. That’s the bad. My booby sister from CA was in DC and her plans were to travel to PA yesterday and stay about 24 hours before heading home to CA. There were problems with the plane that was to take them from to DC to PA, it wouldn’t go. I’m so sad about this. I was really looking forward to it and had done a thorough house cleaning in anticipation of her arrival. And made a huge pot of chili. Bummer. I have high hopes tho for another, better planned out, not last minute visit. Perhaps we will go to CA once all this crap is over with. Michelle was very upset too. She was really looking forward to meeting Francine. She wanted to see for herself that a woman can have, and survive, breast cancer. And that hair really does grow back. Luckily, my friend Leanne was happy to come over with her kids and eat chili with us. She makes me smile. Her children make Michelle smile and so what could have been a bad night turned in to a good night. Thanks Leanne.

Michelle. Oh Michelle. That’s the worst. It’s as if this child is a wonderful, happy go lucky child until she is near me. Or worse, she has to leave me. Being near me makes her sad. And while Alan and I both agree that I do my best to keep it together around her, there is an underlying vibe of fear and sadness that no matter what, I cannot get rid of. So I’m gonna take moms advice. All the “breast cancer awareness” stuff that is lying around my house will be hidden away before she gets home from school today. I had originally thought that if I treated my cancer as part of “life as normal” then it would be more easily accepted by Michelle. But I was wrong about that. Cancer doesn’t need to stare a 7 year old in the face. If I am home in the mornings she is a basket case. But if I am at work and she doesn’t see me in the mornings, Alan says she is fine. It breaks my heart to know that I break hers. She spent 24 hours with my folks over the weekend but never once did they talk about me.

But…for a little humor….during the neighborhood yard sale last weekend Michelle picked up a Halloween wig and said “How about this one Mommy? It will go good with your new boobies!” First time she made a joke about this cancer and it warmed my heart. Stunned my neighbor but warmed my heart. Because humor is always the best medicine.

And then there is my friend Laura. And this is the good. She found a website www.takethemameal.com (take, not make) that she has offered to organize for me. All she needed from me was a list of local names and email addresses of people I know so that she could contact them. Now she will put this together for me. Online. And folks can just sign up that they will bring a meal to my home on a specific day and at a specific time. This makes things so much easier as I have heard from many folks that they would cook for my family as I recover from surgery and then start chemo. And this will eliminate multiple meals being delivered on the same day. I appreciate Laura so much right now. And I appreciate all the folks who have been emailing and saying “count me in.” And I appreciate my mom who had to tell me twice that I had the name of the website wrong. Take. Not make. I think had she been in my home at that time she would have whacked my head to shake loose the rocks in there.

Just another ray of sunshine to help light my way

Resources

I have been making a list of resources as I go thru this journey. My plan was that once I kicked some breast cancer ass I would post all resources. I think tho that it would be good to share them periodically, in case anyone needs them.

www.friendsarebyyourside.com List of salons in the US that offer free wigs to breast cancer patients.

www.headhuggers.org Knit, crochet and sewing patterns for head coverings.

www.youngsurvival.org Online help for young women with breast cancer

http://www.keep-a-breast.org/programs/treasuredchest/ This company will send you a kit to make a cast of your current or new breasts which you can then decorated any way you want. It’s free

www.takethemameal.com A website where people can help ensure that your family is well fed while you go thru a difficult time. In my opinion this is the best website you can visit if you want to help someone else.

www.pabreastcancer.org Online resource for women in PA battling breast cancer.

Time

Just so we are clear….I know I keep saying I have nothing to do but wait. Wait for the next MD appt. Wait for the next lab result. Wait for a surgery date. Sounds like I have nothing but time, doesn’t it? But really, my time is limited. I don’t have time to respond to each email, each text and each phone call, especially if it is always the same person. I don’t have time to see everyone. Because even tho it seems like I have nothing but time, I am busy. Really busy. I have a lot to do. And what spare time I have, between MD appts. and work, I am going to spend right here where I am. At home. With my family. I don’t want to go for drinks. I don’t want to go dancing. I don’t want to spend time with you when I could be with Michelle and Alan. Or my parents. Does that sound harsh? I don’t mean to be harsh, really I don’t. But it’s the truth. If I had a day free, and Alan was working and Michelle was at school….then maybe. But most likely not. Because I have a home to run, a checkbook to balance, and a million little things to do before I have surgery.

And I don’t yet know when that surgery will be. But, for the sake of argument, let’s say my surgery is on May 31. That is 25 days away. 9 of those days will be spent working. 4 of those days will be spent in WV. (as a side note, this WV trip with Alan, Michelle and friends was planned months ago. If we had been invited along last week, I would have said “no”). 3 of those days will be spent (at least partly) at an MD appt. That leaves 9 free days. 9. That’s it. I love you, but I don’t have time. And I don’t know how to tell you. But my friend Lynn, a social worker and the most diplomatic woman I know, has given me some advice about this. I haven’t seen Lynn in ages, but I had no problem explaining this problem to her, and telling her “I don’t have time for you either.” So if you soon hear words coming out of my mouth that are kind and diplomatic, what you are hearing is really Lynn speaking. But right now, what you are reading, this is me speaking.

But….after the surgery, when I am home I will have time. Lots of it. Because I won’t be allowed to do anything.  So while there may be things you want to do for me, or with me, now, please know that the time I will need you will be then. Really. I will need you. I will need you to come over and play Scrabble, to make dinner for my family, to help scrub toilets. I will need you then. All of you. And I will take whatever you have to offer. But if I don’t answer the phone, or the email, or the text then please don’t take offense. I am having a bad day, I hurt. And I don’t want to talk.

I have been surprised with some of the responses I have gotten when I have told people this news. I know you are sad. Perhaps I am the first person you know that has breast cancer. I know you feel for me. But I will say it again: I am not going to comfort you. I can’t. It’s not about you. I know you feel bad, I do, but vent your worries about me to someone other than me. Tell them how hard you cried for me yesterday. Not me. I can’t take it. I can’t. And someone out there loves you enough to listen to your concerns for my health. For my family. For my life. But I can’t help you. And until I beat this, I don’t want to hear your worries. It won’t help me so knock it off.

I know I sound mad. Perhaps I am reaching that stage of grief that is anger. Perhaps. But if you feel overwhelmed about what I am going thru then take a moment to imagine how I feel. This is my breast cancer, and I am owning it. I am going to do all the things I need to do to beat it. And it’s going to suck.

I am going to lose my breasts. Both of them. I am going to go thru what I have been told is a long and painful reconstruction. I am going to take a cocktail of chemo drugs (poison) to rid my body of this cancer. My body hair is going to fall out. I am going to have to a medicine called Herceptin to keep my HER2+ from metastasizing to other parts of my body.

Me. Not you. Me.

Alone Time

For the past 2 weeks I have been able to do just about nothing. I would go to MD appts., and I would go to work. I would talk to my family and I would play with Michelle. I would go on the internet. But other than that? I didn’t do much of anything. I didn’t cook. Or clean. Or go to the grocery store. Or run any errands. I’ve been a hermit even tho cowering in the corner is not my usual MO.

Last night, and this morning, I have a few hours to myself. And I have plans!! Every floor will be mopped or vacuumed, every counter cleaned, every wood surface dusted, all laundry washed, every toilet scrubbed. I will buy some pretty flowers, a few for the kitchen and a few for the guest room. I will buy groceries and I will plan a few meals!! Yes! Those are my plans! Even tho I spent last night on the web and watching shows I have DVR’d. Even tho I am spending this morning on the web. But those are my plans at least, and isn’t making the plans half the battle?

Because tomorrow my booby sister Francine and her man Patrick (Alan’s college friend) are coming to town. And I really need to clean.

But last night I spent some time on the phone with an 18 year breast cancer survivor, we had nice talk and she helped me get thru a dark moment of aloneness. Thank you. And also last night my friend Stacy called. And like all bad medical professionals, when she hears of a medical condition she isn’t aware of she does some Google searches to help herself be better informed. And sometimes, as you know, Google is NOT your friend. I had told her I had looked up my HER2+ status on the ‘net but didn’t like what I saw and so I had decided to stop looking at it. Besides I meet with another Dr. S., lets call him Dr. Sh. on Wed. and he will be in charge of my chemo, and the Herceptin I will need to take that will specifically attack the HER2+ and so I will direct my questions regarding meds to him. And boy to I have questions.

But Stacy found a website she thought might be helpful to me. www.her2support.org And she was right. An online community where women (and men) with HER2+ breast cancer can discuss their treatment, their option and their successes. And this is what I have wanted to see. HER2+ success stories. Because, and please understand this, HER2+ status is a scary thing. I have said the words invasive and aggressive, but here is the scary word I haven’t said yet: metastasize. To be honest, even tho I have been saying invasive and aggressive, I hadn’t been hiding the word metastasize from you. I hadn’t even thought that word until Friday. Which is weird, because isn’t it another word for aggressive? Anyway, remember what I said before, I don’t have swollen lymph nodes. So my lymph nodes aren’t fighting anything. And it won’t be until after my breasts are removed from my body, and after the Sentinel Lymph Node Study, that we will know for sure. It’s very likely that since this dam cancer was caught so early it is still contained in my breast. But even if it is, that doesn’t change that fact that I need chemo and Herceptin. I don’t get it either. But I will find out why when I see Dr. Sh.

But I digress, again. This website is a god-send. What can make me more hopeful than seeing the words “10 years cancer free!” 12, 16? Wonderful, non sugar coated stories of real women fighting, or have already fought and won, the battle I have just begun? Oh thank you Stacy! What a relief to me. You have no idea. Another ray of sunshine along this dark journey. Mom, this is the website you should look at, stop putting HER2+ into Google. Forget the medical jargon and the statistics, and find comfort, like I did, in the stories of these real women. These survivors. Because some day I will be just like them.

A survivor.

If There Is Anything I Can Do...

When you are going thru a terrible time in your life you often hear the words “if there is anything I can do….” And you always say “thanks, ok, I will let you know”, knowing in your heart that you will never really ask that person for anything. Because what can they do? What would you be brave enough to ask for? How low do you have to fall before you call on those people and say “hey, I need you to….”? Of course, you may ask your closest friends and your family for help, but everyone else?

Everyone who has talked to me since I have gotten this horrible diagnosis has said that to me. And for the first time in 39 years I am saying, to practically everyone, “well…what I need from you is…” For selfish reasons, and for reasons that I feel would be beneficial to Alan. Or Michelle. From the male friend who emails me and says “if there is anything I can do…” and I tell him to CALL ALAN! And be there for him. As only a guy can. From the nurse neighbor who say “if there is anything I can do…” and I say “well, I’m gonna have these gross drains that need to be emptied…” Seriously, there are so many people who really can do something to help me, and I have not been shy in the asking. Take Michelle one day a week while I go thru treatments? Thanks. I think our lakeside summer vacation will be canceled this summer but can we come spend a weekend with you at your lake house? Thanks.

Anyone read Readers Digest? I think it was in there that there was a story about a man who was dying. But before he died he called upon all his friends to help his wife raise their kids. I remember that story, how much it touched my heart. I remember thinking “if that were me, I would ask…” I would ask Paulette to teach Michelle about sports. My brother to teach her about cooking. Jill to teach her about nature. The neighbor to teach her about girl things, make-up, etc. Pam to help with homework. My mom to teach her about gardening. There are so many people who have so much to offer my family.

So, like I said, I have not been shy in asking. But being the person on the needing end of something, of really needing whatever it is you have to offer, I have this advice for you: don’t wait for the person you want to help to ask you for help. Offer it. Be specific. It makes it easier. You know what you have to offer, so offer it. If you’re lucky, the person you want to help is able to tell you what they want. Like I have been able to do. But not everyone has that capability. It’s hard. Really, it is. So offer what you have. It makes it easier. So much easier.

And just in case you are still unclear about this, let me give you an inside glimpse of the thought process of someone who is going thru a really terrible time: “help me help me help me help me help me help me help me”

Got it?

Hugs From Jill

On Wed. when I got the call from the therapist that Michelle couldn’t join that support group, I was, as you know, extremely upset. I was also at work. So on my way home I called my friend Pam to vent and to cry (that is really something I need to stop doing, crying while driving) and she suggested that Michelle come to her house after school. Good idea, as I was noticeably distraught. And once the tears start, for any reason, it takes me a long time to get them to stop. So I get Michelle off the bus and we head over to Pams. Pam hands me a beer and I sit down in her comfy chair and start to regain my composure while taking comfort in the quiet support of a good friend. That’s something all friends of cancer patients should know how to do, offer comfort by being quiet. Seriously. Shut up about it sometimes. Anway, while there my cell phone rings and it’s my good friend Jill, who just happens to be sitting in my driveway.

Jill is a great woman. She is like another mom, and her husband is like another dad. They came into our lives as Alan and I became more adventurous in our outdoor activities. Any time a day is planned with Jill I know there will be snacks involved. Good, homemade, yummy, chocolate-y snacks. No matter where we go, if Jill is there, snacks will be there. Sometimes, if Jill is not there, but her husband is, we still get snacks. No, not sometimes. All times. One of the first times we got together after meeting I had brought Michelle along. And Jill brought some crafts for Michelle to do if she got bored. I didn’t bring crafts for Michelle to do. Jill did. That’s the kind of woman she is.

So Jill and I spent about 15 minutes standing in my driveway talking. And I was so touched by her quick stop over, and what she is doing for me that I texted her and asked if I could use her name in this blog, so that I could share the ray of sunshine she brought into my life with anyone who cares to read it. She responded with a “yes” and told me she hopes my blogging is as therapeutic for me as it has been for her and her family. I simply texted back and “xox” but what I should have said is “hell yes this is therapeutic for me. I don’t care if anyone ever reads it or not! Getting all my thoughts down as I go thru this journey is the best choice I could make. It helps me. A lot.” You really have no idea how much…

But I digress. This is about Jill and our 15 minutes together in my driveway. She hugged me. I cried. She is just one of those people you don’t have to be strong for. You don’t have to hide behind a smile. When you are with Jill, you can be you. And at that time my “me” was a mess. Jill had stopped by to put a head hugger on my head to make sure it was the right size. www.headhuggers.org. She had sent me that link and asked me to choose my favorite head huggers, and what colors I wanted them. Because between Jill and one of her daughters they can crochet, knit and sew any head hugger I would want. When she sent me the link I took a quick look at it and then closed it. Couldn’t do it right then. Choose head huggers? To cover up my bald head? Good grief. Who wants to do that? But “want” doesn’t really come in to play here. Like it or not, “need” is the word I should use. Because I will need a few head huggers for days when I just don’t feel like wearing a wig, or if it itches, or if my head just hurts. So eventually I did look and now her needles are clacking away to make sure my head is properly hugged. My head. Hugged. With love. From Jill.

And she gave me a key chain, a pink boxing glove. And a rubber glow in the dark breast cancer awareness bracelet for Michelle. And a bumper sticker that says “fight like a girl” in pink letters that will have to go on Alan’s car because it’s one of those that stick on the inside of the window and my windows are tinted. And another bumper sticker, that is already on my car. This one reads “HEY CANCER! YOU PICKED THE WRONG BITCH”. I am going to get those words onto a T-Shirt soon. As well as a T-Shirt that says “Surviving”. And then I will gladly explain to Michelle what the word “bitch” can mean. It’s not always derogatory. Besides, last summer I accidentally taught her the word “shit”, so “bitch” isn’t so bad.

Everyone should have a Jill in their life. I am lucky to have her in my corner. She is an asset to me. My family. Michelle. She is kind, loving, smart and funny. She shares willingly and will gladly help me carry this load. She is like a mom. And like the mom I was blessed with, I aspire to grow up to be like her. We could all benefit from a little bit of Jill in our lives.

Plus, she offered to pull me in my inner tube behind her kayak this summer if I am not up to paddling. Or…did she offer to hook my tube up to Alan’s kayak?

Rules

I am going to tell you about two rules I have recently found out about when it comes to breast cancer support groups. This first one makes sense; I get it, but the second one…not so much. In fact, it really pissed me off.

When a member of the SOS group calls you, your caller ID will display “private”. At first, I didn’t think much of it as many people do have private numbers, it was only later that I figured out why it displayed “private”. But I will get to that. Anyway, Wednesday night a woman from SOS calls me, on my request. A woman that also chose a double mastectomy over a more conservative approach and also went thru chemo. I of course, cannot tell you her name but I can tell you this: there are some amazing similarities between the names of the female members of her family and the female members of mine. I think that this, like the fact that Francine and I share a birthday, is a sign of goodness. I no longer believe in coincidences. But I’m getting off track…

This woman was wonderful to talk to. She told me the good, the bad and the ugly without sugar coating it. Without any of that saccharine sweetness people often put into the tone of their voice when they are talking to a person with cancer. She said “yes, this sucks” followed by “you will get thru it”. The most important thing she said to me she said thru an email I received from her yesterday..and I quote:

“Stay your course of proactively seeking information. You are a strong woman with a great sense of humor. What you are showing your daughter is how to navigate the hard core crap that life will throw us with dignity, style, and grace. She will watch her mother take the bull by the horns, even when it is not pretty, and move forward with living. This is a gift that her friends and classmates may never receive form their mothers.  You can, and you will do this for your daughter. Most importantly, you will do this for yourself.”

I truly appreciate this woman. Thank you.

She also told me that her hair started to fall out about 10 days after her first chemo treatment. Dam. (and why did I tell Martino yesterday that I had heard it would fall out in “a couple of days after the first treatment”? Since when is 10 days “a couple”? I knew better, and I said it anyway. I can’t figure that out)

This woman I spoke to has children, but they and were much older then Michelle is when she was going thru treatments. So she said she would have someone else call me, someone who had young children during the time she was diagnosed with, and treated for, cancer.

So SOS #2 calls…and her number displays “Private”, and now I get it. Star 67? Anyway, once again I find myself on the phone with a woman whose female family members have name similarities to the names of the females in my family. So amazing it’s almost creepy. I told her I wanted to meet, to let her talk to Michelle, to let her kids to talk to Michelle. And here is where I find out about this rule: it’s not allowed. It’s private. Ok, I get that. These SOS women don’t need some crazed stalker person chasing them down. It’s really OK, I get that. But that doesn’t help Michelle, so now what? And then Michelle comes downstairs, so I ask this woman, can she talk to Michelle on the phone? She didn’t see why not so I gave Michelle the phone and told her to ask any question she wanted. She wanted to know: how was that woman now? How long until her hair grew back? How old were her kids? How are they? And most importantly, did this woman know that she had just lost her second top tooth? This woman helped Michelle, and I was so thankful for that. Thank you.

Last week I made an appt. with a therapist for next Wed. This therapist deals exclusively with women who have breast cancer and their families. Ultimately, I want her to be Michelle’s therapist, but I (we, Alan too) are meeting with her first. When I spoke with her over the phone I told her one of my main concerns was Michelle. I needed help to help her navigate this journey we are on. She told me about a Kids Support group that meets on Thurs. nights. It’s an 8 week group that had started 3 weeks ago. But she will make some calls and find out if we can join. This group is FOR KIDS who have a family member with cancer. Since Michelle is a KID and her MOMMY HAS CANCER I figured that the therapist making some calls was just a formality. I was wrong. She called me back on Wed. afternoon to report that she checked into it and “they” (not her, this isn’t her group) feel that “it would be in everybody’s best interest to not introduce a new member to the group now that it has already started and bonds have been made.” Ummm…what? That’s one hell of a rule. Wanna know what I think of that? It is NOT in “everybody’s” best interest. Because my family falls into that “everybody” category, and telling us that “no, Michelle can’t join” is not in her best interest. At all. And I can’t imagine being the person in charge and saying “no”. And I suppose there is the slightest possibility that she has a valid reason for saying “no”, there is the slightest possibility that it broke her heart a little to say “no”, but that doesn’t stop my blood from boiling when I think about it. (And hey, I have invasive and aggressive breast cancer; I don’t think it’s good for my blood to boil.) But it is what it is, and I need to roll with it. And I need to find something else for her.

Because what Michelle really wants is to know she is not alone. That there is other kids out there that are going thru this, or have been thru this. She wants to talk to them, to ask them questions. I don’t blame her. We all need that. We all need to talk to someone who is going thru exactly what we are going thru. And it’s easy for Alan and I to find that support. Why is it so hard for Michelle? My Michelle. My baby.

Martino Cartier

Today I saw a guy about a wig. Martino Cartier in Sewell NJ. He is the founder of the organization I mentioned before, but I will mention again, www.friendsarebyyourside.com. A free human hair wig service for woman with breast cancer, with participating salons all over the US.

So Paulette and I leave her house around 8AM for a 2 hour (well, 2 hours from my house) drive to his salon in NJ. My appt. was for 11:30. We were a bit early, to say the least. But we had to take Rt. 76 and 676 thru Phila and early is better than late, right? After a bit a traffic we arrive in Sewell around 10, so we now have an hour and a half to kill. Which we did at Starbucks. And Target. Where I bought a hat. A hat. A hat. I bought a hat to cover up my bald head. My bald head. By July, I will have a bald head. This just can’t be real.

We arrive at Martino’s salon a few minutes past 11 and he comes right out to join us. As expected my throat immediately closed up and Paulette had to do the talking at first. She gently lifts up a handful of my hair and says “See these beautiful curls? We need to replace them. Temporarily.” Could I love this woman anymore than I already do?

Martino asked how I heard of him and his organization so I told him what you all already know. That Romina sent me the link and when I called the salon closest to my home the person on the other end had no idea what I was talking about and the owner and manager were not there,  so I had decided to go directly to the source, him. He was livid! Not at me, of course, but at this local salon. And the next thing I know I am in his office, on his website, showing him which salon it was. AND HE CALLED THEM RIGHT THEN AND THERE AND GAVE THE OWNER HELL!! He was downright pissed off. Told her that I was standing there, right there, that I had driven 2 hours to see him when I could have driven 20 minutes to see her. She  told him they have only had one call in the past year for this service and that she didn’t have enough staff or space to really do this. Oh my gosh was Martino livid. He really was. He said some more to her and then hung up on her. Hung up. On her. It was a priceless moment. He then mumbled something about “atheists” and sent his webmaster an email to have them removed from the website, which it was immediately.

And we got on with my consultation. And by now, I have my voice back. Who wouldn’t after that? I know this foundation is Martino’s baby and all, but he was also sticking up for me. And if someone can get that mad, on my behalf, well….that someone very quickly becomes dear to me. We discussed my current hair and he told me it would be hard to get such a curly wig to match what I naturally have. That most curly hair wigs are made of African American hair. I told him how Michelle wants me to look the same and he pauses and says “well, perhaps we might be able to perm the hair”, and the voice in the back of my head is saying “good, that will make Michelle happy” but the voice coming out of my mouth says “no, that’s ok. I could use a bit of a change.” So my wig will closely match the color of my natural hair (or, the color of Nice-n-Easy medium golden brown anyway) but will be wavy as opposed to curly. I have a picture of it, sort of it anyway. Mine will be lighter, and I will have him cut it a bit shorter. But, as far as wigs go, it’s beautiful.

And so is Martino. Inside and out.

When I am ready I go back and he will shave my head. He told me to bring Michelle so that she can use the colored hair sprays on my current hair to her hearts content. That she could then help shave my head. That they would pretty her up too. Blow out her hair. Make her feel special. It will help a horrible moment become bearable. Light. Happy. Freeing. I’m bringing wine too.

Going to see a guy about a wig because you have breast cancer is not an easy thing to do. No doubt about it. But taking Paulette with me and meeting Martino made the experience enjoyable. Yep, you read that correctly, enjoyable. I had high expectations of Martino and his salon and I was not disappointed. It was worth the drive. The traffic. And the fact that I forgotten to take the EZ Pass out of Alan’s car.

Martino is another person who has come into my life during this horrible period that I wish could have come into my life a different way.

Mid Day Ramblings

First let me start by saying I AM HUNGRY!! It’s about time too. Since April 20 I have lost six pounds. Now, under normal circumstances I would think that losing six pounds in 12 days is a phenomenal accomplishment. But I am not functioning under normal circumstances right now. And I didn’t safely lose six pounds thru diet and exercise, I lost six pounds because I really didn’t eat. I couldn’t swallow. Or taste. Not even my moms chocolate cheesecake. And while those folks who love me would gently reprimand me for not eating they didn’t make a big issue of it either. Alan saw me eating lots a fruit. So every night he has been making me a large container of fruit salad and I would spend the next day eating it. Yesterday, after seeing Dr. S. I was hungry. So Alan and I stopped at 5 Guys’ and I had one of their horribly delicious burgers. That burger probably contained more calories than I have been eating in two, maybe three days time. It feels good to want to eat again. I need my strength for what is to come.

I feel like I am living on a roller coaster. Just looking at my blog entries I can see that. I am all over the place. Happy. Calm. Sad. Angry. Scared. I don’t seem to stay in any one place for very long. I would like for this roller coaster to reach a plateau so I can just spend some time gently moving forward without going up or down. Is this what a bi-polar person feels like? I can’t organize my thoughts. I can’t remember the mundane tasks of life. I can’t remember what day of the week it is. I don’t have time to return each phone call or email I receive, which is weird because I feel like I have nothing but time. Time waiting. Always waiting. To find out what is next. And now I also am waiting to find out when. And even tho I want everything to have started yesterday, I find myself asking “can it wait till after we go to West Virginia?”

I have a friend named Nancy. She came into my life in much the same way as Jane has. We need(ed) her, but we wished we didn’t and we resented her presence because of the reason she was there. Nancy, like me, is a home health nurse. She, like me, spends her working days making someone else’s life easier. She is my step-daughter Mary’s nurse. And she has been with us since the accident. After nine years (almost 10) she has become a fixture in our lives. Much like the sink. She makes life easier but like any other family member, she sometimes makes us nuts. She was in my home the day of, and the day after, my last biopsy. So she knew what was going on. I had even asked her to check the hematoma that formed at the biopsy site. I hadn’t seen her again till yesterday but I had informed her of the results and directed her here. So yesterday she gives me a big hug, offers all her love and support and then talked to me. We had such a nice talk. Her work day was over so we opened a few Corona’s and chatted for almost an hour.

She told me that she could tell last week that I just knew. That I knew what the biopsy results would be before I had gotten them. She said there was an aura surrounding me that negated my smile and my positive attitude. And she was right. I knew. I did. I could feel it deep inside me, in that place where the truth hides until it’s ready to confront you. I was just amazed that she knew I knew. That the bond that was formed out of necessity could lead her to my truths. It made me love her even more. And I am thankful that she will be in my life, and in my home, as I go thru these next few months. I will need her, and she will be there. And all the other nurses that help Mary? They will be there too, in my home. And while I know that they are there for Mary, they will simply be there. With knowledge and skill that I can draw from. The clinicians attitude that in my working life I am so good at maintaining but in my personal life, when I can’t see what is going on beyond the current crisis leaves me falling to my knees, I will be surrounded by nurses. And knowing that gives me a bit more peace of mind.

And today is turning out to be a good day. Thankfully. Tomorrow Paulette and I head down to New Jersey to see a guy about a wig. And I am looking forward to the day. A day spent with my bestie who took the day off to spend with me. A woman of such strength and character, who can hold my hand and make me laugh as I discuss with Martino the kind of wig I want. Good grief….I am going to see a guy about a wig. I never thought I would say that! Going to see a guy about a wig. A wig. And, since I already told Michelle about the whole hair falling out and getting a wig thing, I can no longer go for straight and blonde, or fire engine red. She wants me to get something that looks like what I already have. And here I thought I could finally spend at least one summer frizz free. But she wants me to look the same, and I get that. Because she and I look alike, and that makes her happy. But still, I’m thinking thick and wavy, a la Cindy Crawford, Sarah Jessica Parker, Julia Roberts….

Plastic Surgery, Take II

Yesterday I found myself back in the Plastic Surgeons office. This time with a definitive plan on how I want to proceed in killing this cancer, and with Alan by my side.

Unfortunately, this appt. was about one hour after Michelle’s bus stop meltdown and I was in no mood to talk. So in walks Dr. S. with his hand extended saying those words I have come to hate. “How’s everything going?” And that is when I had my meltdown. I couldn’t speak. My throat closed up and the tears started pouring down my face. Dr. S. offered me a moment to compose myself but I was able to squeak out “no, Alan can speak for me.”

But, like a good surgeon, Dr. S. was able to tell us just about everything we would need to know, without our ever asking a question. He says that after Dr. C. removes my breasts he will come in and place expanders under my muscles and close me up. Easy peasy, right? The whole procedure will take a minimum of 4 hours. And I can expect to spend at least one night in the hospital. Then I will see him weekly after that so he can expand my expanders until they are the desired size. I’m still thinking C cup but from what I understand I can stop the expanding at any time if I am comfortable with the size/shape. Once the expanding stops, I wait….was it about 6 wks? For the skin to heal and then the silicone will be inserted. And voila! New breasts! But…I cannot bring myself to even talk about the whole nipple reconstruction. It’s just too weird. Sounds to me like I will be ringing in the new year with new boobs. Crazy. And I am still having a hard time processing this. It just seems too unreal.

He also told me that not only will I leave surgery with a port below my clavicle for the chemo (I knew about that), I will also have two “drains” on either side of my chest so that I can (approx) twice daily dispose of the medical waste that will be draining out. Wait. Back up. What?? Drains? Sticking out my sides? That I have to empty? Ewww…I know I am a nurse and all, and I do like to see some gross stuff and everything…but this?? This is nuts! I don’t want that. Really. I don’t. And I am going to be calling on all my nurse friends to help me with this. Because in all this shit I’m going thru, this is where I draw the line.

I forgot to ask Dr. S. how long the drains will be in place. I also forgot to ask how much time I needed to heal before I could go back and do my job unrestricted. He gave me his cell number tho. I wonder if he gets text messages?

So while there Dr. S. needs to take measurements. All kinds of measurements, top to bottom, side to side, diagonal. And don’t forget the pictures!! Oh yes! Pictures from all different angles of my breasts. He says they are all shoulder and down tho. I hope so. I wonder if he will give me a copy? So there I stand in my jeans and shoes, my hospital gown open and pushed off my shoulders while Dr. S. sat on a swivel stool in front of me taking pictures and measurements. Behind him over his right shoulder is Alan. And to his right is the nurse who is kindly writing down all the measurements. Dr. S. is just calling them out like it’s a sandwich order and 15cm. is really code word for “turkey on rye.” And directly in front of me, directly! Less than 5 feet away and only slightly obscured my Dr. S. on his swivel stool is a great big full length mirror! Fun!! So I get to stand there and stare at myself while I’m being measured and photographed and all I could think at that point was “who on earth would put a mirror there? Right there? Where I can watch this? Bahhhh…men…” And then I closed my eyes.

But I did not fail to mention to Dr. S. as I was leaving that the mirror wasn’t helpful. At all.

And so now his scheduler is going to call Dr. C.’s scheduler and they will schedule my surgery.