Tuesday, January 31, 2012

Dear Life,

Dear Life,
Please simmer down. I'm not talking insanely fun wedding planning. I'm talking surprise surgeries and other unexpected and unwelcome medical things.
Two weeks and one day out from my right implant removal surgery, and I feel pretty good. I am mostly (mostly) past the whole I-only-have-one-breast-for-my-wedding-thing, and have moved on to adapting to it and my prosthesis and new prosthesis bras and clothes. Which are amazing. There is a reason prosthetic breasts are about $300 a pop each. Because they look and feel real, and every day that I feel like I'm "faking it" with two boobs, I feel better about my appearance and therefore better about myself.
No matter how crazy it sounds (and unexpected it sounds), I think one of the main reasons I am dealing so well with only having one breast and not the other, for the first time ever, is because, for the first time ever (since my mastectomy in May), my pain is minimal. I still have the pain from the surgery. The pulling and tight feeling of the scar tissue healing. But already, I'm in a lot less pain NOW than when I had my implant. Even three months post surgery. And, frankly, at this point, I just want to be comfortable.
I say it time and time again: I haven't been comfortable since before my mastectomy in May. Chest pain, back pain, pain driving, pain sleeping, pain moving, pain opening doors, pain sneezing, pain carrying purses. With the expander it was like I had a rock in my chest. Constant pulling, tugging, stretching and spasms. The right implant, though made of silicone and not "rock," didn't prove to be much better. (Hence it ripping my skin from tightness).
At this point in the game, I'm less concerned with how many breasts I have, and more concerned with moving and living comfortably. And maybe, just maybe, I can do that now, for the next six months, until I begin reconstruction again.
Today marks the two-month countdown til the wedding and I am entering a new "zone." This is the Marjie-pampering zone. This means I am going to be, besides the wedding planning and puppy craziness, taking care of ME. Scheduling manis and pedis, massages and facials, teeth whitening, hitting the gym more often, and other things that help me take care of me. I want to feel good about me, even if that means putting a little more mascara on my eyelashes to cover what I don't have on my chest. I still feel beautiful, and for the most part I still feel whole, even without a breast. The little part of me that doesn't feel whole yet is the part of me that has to convince myself that I AM whole. That I am still me, 100 percent, despite what body parts I do or do not have. The prosthesis is wonderful, and they make wonderful clothes for women like me. But at the end of the day I take them off, and what isn't there isn't there, no matter how much I try to pull it and twist it like taffy. Does that upset me? Yes. But moreso, it challenges me. It challenges me to see ME in a different way. It's a challenge I never imagined, in a million years, I'd have to embark on, especially just months before my wedding. So that's the part that needs filling. The part of my brain that's not quite sold yet on how I look.
And also the part of me that has to convince myself that all this is OK - that I'm a different type of bride but that's OK. I always, no matter how hard I try not to, compare myself to other brides. I know it isn't fair that I've had to deal with breast cancer on top of four surgeries on top of a Li Fraumeni Syndrome diagnosis on top of planning my wedding, working full time and living full time. A bride should be planning her wedding and that's it. But I know life doesn't stop just because you think it should. Things happen no matter what's going on in life. It just sucks that I've had ALL this to deal with, one thing after another, WHILE I'm supposed to be enjoying this very valuable moment in my life. But I HAVE been enjoying it. I didn't ask for this challenge, and I didn't ask to be a special bride. But as Popeye says, "I yam what I yam."
And my two engagement parties, three bridal showers, bachelorette weekend, and upcoming two aufrufs are going to be proof enough that none of this interferes - or even TOUCHES - the magic that is this pre-wedding phase. And I have to believe it won't come near the wedding itself either.
So life, please simmer down. Just a little. Let me focus on these next few weeks and weekends, which are booked up to the wedding. And let me focus on me and my puppy and Sean. And let me be in the zone I want to be in.
As I write this, I ask myself: "Why am I asking Life's permission? Why am I addressing Life?" After all, it's me who's in charge. Two-month countdown and all the excitement and joy that comes with: GO!
{100th post on Pink and Pearls!}

Thursday, January 19, 2012

On my wedding day

As any writer knows, when the words hit, you write. You don't wait until morning, because you've got the drive now. So, here I go with a post, as I wait for my Ambien to kick in.
I'm not gonna lie. I've been mostly surviving on chocolate and Ativan these past few days. An unexpected surgery turned my world upside down. I was cancelling work meetings and assignments and plans with friends, and all of a sudden I was forced to picture myself at my wedding, nearly two months away, without one of my breasts.
But as I once told myself, and something many people have told me: life isn't always what we expect or want it to be. Things change and things happen, and we are forced to make sacrifices, whether we want to or not. We are forced to adapt, to accept new normals, to live differently than we may have planned.
My entire life I pictured my wedding a certain way. I've dreamed of this day since I was a little girl. I've dreamed of this day in more detail, and more thoroughly, since actually getting engaged. But two months out I have to re-create this vision I was so set on. I was set on having both my implants for my wedding, filling out my wedding dress just right, and not being reminded (by the look of my chest), for once second, I had breast cancer just months before.
But strong people realize what they have to do to move on and accept life as it now is. Ok, so right now I'm admitting I'm a strong person. And this is my new story:
I never imagined I'd get married with only one breast, and I definitely never imagined I'd lose that breast to cancer. But what I did imagine was marrying the most wonderful man in the world. My soulmate. My meant-to-be. My everything. I did imagine having a big, beautiful wedding filled with the people we love most - our family and friends. I did imagine I would look beautiful and my dress would be the most beautiful dress anyone had ever seen. I imagined I would have fun. I imagined I'd laugh and cry and dance and sing and close my eyes during certain portions of the night, praying that it never ends. And I believe I can, and will, have all of those things.
So I won't have a breast? So what? I'll have everything else, and it's the everything else that really matters. Maybe I'll be able to move more freely without the tight implant, and dance without pain. Maybe I'll actually be more comfortable. I don't know that yet since it hasn't even been a week since the surgery, but I do know the right implant (the one that was exposed and then had to be removed) was tight. I wrote about it a lot in the blog. It was tight and pulling and never felt any better. It makes sense that it ripped my skin. It didn't work out and that's probably why it hurt so much and never got comfortable for me. So maybe I'll have less pain during the wedding, and if that's the case, this all was a blessing in disguise, this unexpected surgery.
I could almost laugh at the whole situation - what happened Sunday night. I could laugh and think, "is this seriously happening ... two months before my wedding?" I could also be mad, and trust me, I have been. Instead of laughing I've been crying and instead of being mad I've felt sorry for myself. I tried so hard to do this, I told myself. Live my life and be OK and be strong and have fun and go on my bachelorette weekend, and look what happened: my implant had to come out two months before my wedding!
But instead of thinking all that I'll just embark on this new challenge of me finding my whole-ness for my wedding. I won't find it in any body parts. (Well, maybe my heart and head.)
The whole-ness. It's all in here, on the inside. And I do know this: on my wedding day, my breasts are the last thing I'm going to be thinking about.

Wednesday, January 18, 2012

4th post of today {taking this all in}

I know I've already posted a bunch of times today, and for good reason. There's lots for me to sort out. I had an amazing bachelorette weekend that ended in unexpected surgery. As much as the surgery was unexpected, the results are moreso. I'm faced with learning how to deal with new normals, and finding NEW peace and balance (something I hadn't quite achieved yet) in the (now) weeks leading up to the wedding. I wasn't mentally or physically prepared to deal with another surgery (a fourth in six months), and how that leaves me after, which is without a breast. So where do I go from here? How do I gather my thoughts and my strength, and how do I garner my power, to find a way to keep going and to thrive in this time of my life where I need it the most?
Sure, this really isn't the best time to be dealing with multiple surgeries and the emotional and mental affects they have on you. Not any time before the wedding, and certainly not two months before the wedding. Funny. Life. But it happened anyway. My implant is out and we can't go back in time. Instead I have to learn, all over again, who to be in all this. Our RSVPs our floating in, fast. My first dress fitting, which WAS scheduled for Friday, has been pushed back. I need to find mastectomy bras. I need to deal with, YET AGAIN, ANOTHER, brand new normal. I was really, really ready for things to settle down. And as much as I hate all this that's happened these past few days, I accept the challenge, because I have no other choice. I accept the challenge that not many are faced with: how do I be a bride and feel beautiful and whole with only one breast? How do I feel beautiful and whole on my wedding day, and how do I feel like ME on my wedding day? How do I feel like ME with only one breast? What makes this bride different from all other brides? I could tell you a million different things. We could start with the breast cancer and then go onto how the reconstructive surgery didn't exactly "work," and then we could talk about a scary LFS diagnosis. Yes, all those things make me a different bride. At 27, especially. And no, I didn't ask for all of this, and I didn't ask for ANY of this.
What makes me different is the challenge (yet another one) I embark on, starting today. The breast cancer made its mark. I was diagnosed in April. It was taken out and reconstruction began. This was all supposed to be in the past. But what the breast cancer did - remains. It's effects remain. And they will, for months and years until my "breasts" are complete. But who has time to wait for surgeries and recovering and implants and expanders? I have to be complete now, with or without breasts. And I have to get married, with or without breasts. I have to remember what really, really counts. I am better than this, I am stronger than this, and I'm getting married on March 31 LIKE THIS.

of course I'd post pics of my bachelorette! :)

Despite the whole emergency implant removal surgery at the end of my bachelorette weekend, the weekend was INSANELY fun! We had the most amazing time! My best friends are amazing, and my Maid of Honor Karishma, went all out with the food, drinks, favors, decorations and goodies! Although it would take me 5 million years to describe every last PERFECT detail, here are a few: hotel rooms decorated with pink and white balloons and streamers, walking the boardwalk, taking pictures on the beach, seeing a palm reader, visiting a candy store - Sugar, which has the world' biggest and best candies, gift bags for everyone with shot glasses, casino favors, a lipstick pen, pink and silver beads, magic wands, glorious dinners, dinner at the Red Square which had a $60 martini on the menu, and sharing amazing salon and tuna with Julie, singing and dancing all night at the karaoke bar, getting a group of guys from Connecticut to buy us shots all night, and me in turn giving them beads, dancing (a lot) with another bachelorette, an almost-stripper the first night, sharing personal things with friends, laughing together, crying together, Betty Boop candies, ManCandy, inside jokes, bachelorette checklist. The weekend was incredible, and easily one of the best in my life. Thanks to my amazing friends for making it an amazing, memorable weekend. It was more than I could have ever hoped for or imagined. To my friends: you are my life. You are my world. Thank you for giving me the best bachelorette weekend a girl could have! So those are my words...here are the PICTURES! (most from my camera, some from others)

Interesting ... part 2

What makes this so interesting/shocking/confusing:
I didn't want to have any more doctor's appointments and worries and anxieties before the wedding. Ooops, no - surgery instead. I wasn't mentally prepared for surgery, and trust me, you have to be mentally prepared for it. Mentally prepared to be in pain and feel sick and the Bactrim and Percocet, and drain, and showering is difficult and you have all new wounds and you have to move slowly and be careful and can't lift anything and can't take care of the dog you just got and can't work and can't see your friends and can't keep your plans you already made because you thought, for one teensy second, YOUR LIFE WOULD BE BACK TO NORMAL. (silly me for filling my calendar with plans .... I thought I was done with all this....)
Oh, and should I mention when all my healing is done and I'm feeling better and I'm back to life, I still won't have a breast on one side? At least with the tissue expander and implant I was faking it. It appeared I had a breast there. I looked normal from the outside. I could forget I had breast cancer. I didn't have to be reminded every day of what it did to me, what it robbed me of. Oh, and we were done in such record time! My implant surgery FIVE months before the wedding! Perfect timing!
Now, it doesn't matter how many cups I have sewn into my bras or how many special mastectomy bras I have or wear, every day getting dressed I am going to be reminded of it. I can't just put on clothes and go. And people could tell me: "nobody will know the difference," etc., and as much as I believe them, they also have to understand that I know the different and I'm the one without a breast .... without a breast for my wedding. I was supposed to be healed and happy and at least look normal from the outside, especially for my wedding.
And even as I say all these things, I'm not sure if going through more surgeries and more pain and more expansions is even WORTH IT. The pain was so bad, I'd almost rather just not have a breast there.
The truth of the matter is, I have a long road ahead of me in which I'm going to have to accept what my body is now, get used to it, and be OK with it for the wedding - the most important day of my life where I once imagined I'd have all of m body parts. I'm going to have to accept all this without any warning. I had no prior knowledge I would have an implant removed, and no prior warning I would have this mental and emotional road ahead of me. How do I feel whole again? That's the question now. That's the goal now. How do I feel whole? How do I accept what my body looks like now, two months before my wedding? How do I accept that THIS bride is very different from all other brides? How do I accept all the pain I went through - multiple surgeries and expansions - was almost not worth it? How do I accept I've had four surgeries in six months, and after all that, after all the pain and the steri strips and the healing and the pain and the healing I am without a breast?
In case you didn't know before, let me tell you: breast cancer never ends.

An interesting turn of events

Hi everyone,
I'm not sure exactly where to start so I'll just jump right in: my bachelorette weekend (in Atlantic city, NJ!) was insane! We had the best BEST time in the world! But as of Sunday night I was in Hershey in the emergency room for surgery to have one of my implants removed.
Basically there was an issue with my right implant. (the side I had the mastectomy and tissue expander.) About a few weeks ago I noticed a little "hole" on the side of it...kind of like a wound that started to heal. I showed a few doctors and nobody was that concerned about it, so I didn't think much of it. I just assumed it was my skin healing. Then the wound kept getting bigger and bigger, and wasn't scabbing over like a regular wound should. As of late Saturday night into my bach weekend (post 2-a.m. dancefloor madness) it was the biggest it had ever been, and had started bleeding a little. I knew something didn't seem right, and it killed me to wait to tell anyone because it was worrying me. So I told my friends, we go back to the hotel room, and call my plastic surgeon. The doctors on call paged him, and then got back to us, sometime around 3-3:30 a.m., and told us to come into the ER right away. They believed my implant was exposed, and if left that way for any longer could cause an infection, if it hadn't already. My friends are the best ever, and by Sunday morning Julie and Sean's dad Jeff drove us to Hershey. Sure enough, the implant WAS exposed and had to be removed right away -- that night. Keep in mind since the doctors were preparing for surgery I wasn't allowed to eat or drink anything starting Sunday morning just in case I had to go into surgery. So my stomach was empty and I was so dehydrated, especially after a night of drinking.
So I was with Julie and Jeff. We were on and off the phone with my mom and Sean, trying to figure out who would get to Hershey when, who would watch Campbell, etc. Sean was in New Orleans for his bachelor weekend, and was trying to find the next flight out.
So Sunday night they removed my implant, and put nothing in its place - no expander, no anything. For the first time I am flat there. With the mastectomy in May I at least had a tissue expander put in right away.
So, here goes the medical portion of this post: Basically my skin couldn't support the implant, for a variety of reasons. Too much skin being removed in previous surgeries, just having thin skin, lack of blood supply, etc. So basically my skin RIPPED (formed a hole) around the implant, exposing it. Thank G-D when they got it to it wasn't infected, because with an exposed implant, infection can happen right away and can be very serious. So because my skin was too weak to hold the implant, they can't put another expander in yet, or an implant, because the same thing would happen. So, they have to leave it empty, and let it heal about a month or so. Because a month from now is a month before the wedding (YES, lovely timing!) there is no way I could have another surgery and start the expansion process before the wedding. So, my reconstruction will begin AFTER the wedding, and until then, I'll just be flat on that side. They make special bras for this type of thing, but it's not the same.
Reconstruction process: I'll (obviously) have many more surgeries for this. The first will involve taking muscle and skin from my back, and applying it to my right side, to create more skin/support. Then they will put in an expander under that. I'll go through the regular expansion process (a few months or so), and then have another surgery for the swap-out: taking out the expander and putting in the implant. Since I was going to have a left prophylactic mastectomy anyway, we are going to see if that can be done the same time they do the right expander surgery. Anyway, what I'm looking at, essentially, is DOING THIS ALL OVER AGAIN. ON BOTH SIDE. TISSUE EXPANDER SURGERY. TISSUE EXPANDER PAINFUL EXPANSION. AND EVENTUALLY ANOTHER SURGERY TO GET MY IMPLANTS IN. All over again.

Thursday, January 12, 2012

Good to go!

Hi everyone! I don't have much time so I'll give a quick update!
My blood test (LDH levels and all) came back normal! I am going to see my doctor again in a month to get whatever vaccinations I'm not up to date on. I'm not crazy about going again in a month, but I know he wants to monitor the lump still, and I know he wants me to have a flu shot. And it's been decided that unless it's an emergency, any test he wants to do CAN WAIT until after the wedding. I'm not putting myself through any unncessary, stressful situations that could potentially be avoided.
I'm breathing again. ::Me ... breathing::
I THOUGHT it was going to be OK, but time and time again, I've learned that I don't know until I know.
Ok, so now it's time for me to focus on this weekend! My bags are packed and I'm ready to go! Bachelorette to commence TOMORROW! Have a great (early) weekend everyone!
I have to remember, when I get shaky and can't sleep and get agitated with the world while waiting for test results, that it probably will be OK, that things always work out how they're supposed to, and that G-d's got my back through all this. Sure, this week hasn't been pleasant. That's an understatement actually. But I'm OK now and I've got fun on the brain ... nothing else.
Here's to an amazing weekend with my best friends, and for Sean to have an amazing bachelor weekend with HIS best friends! Let us both (and all involved), have a safe, fun, incredible, memorable weekend.
I got through this last waiting period. It wasn't easy. It was hard on my body, my mind. It wore on my soul. But all that matters now is that I'm OK. I'm OK now and I'm moving forward.
Let's do this weekend!

Wednesday, January 11, 2012

What causes my rain

I hate having to leave my phone on the full volume setting at work because I'm waiting to hear from a doctor about test results. I hate that I'm burdened by checking my phone all the time when waiting for these results. They could come at any time, at any day. They could say anything. I hate that they DO say anything at any time during any day, and that I have to duck into the bathroom at work to take these calls. I hate that I get test results over the phone DURING work.
I hate that I have nobody to be mad at for doing these tests. I could be mad at my doctor for not considering my mental state when "testing for Lymphoma" less than 3 months before my wedding. But I could also be mad at him for not taking my health seriously. And if he told me he wanted to take blood, would I really refuse? Would I really be OK with not knowing things when we could know things? Would I really be OK with just leaving the lump in my neck without any follow-up? Obviously not, which is why I got tested for LFS in the first place. BECAUSE I know I wouldn't be OK not knowing things, when this information is available. It's a blessing and a curse.
This runs my life. It's good because it runs my life and I can keep my health in check. It's bad because it runs my life and causes me extra stress and anxiety. When I'm waiting for test results I don't sleep. I cry in my car in the way to work. I have trouble thinking or planning for the days ahead. I'm waiting ... hanging on the next thing. I could tell myself: "that's no way to live" and then I could try, or practice, living differently: just LIVING and just BEING, NOT waiting on the edge of my seat every minute of every hour of every day.
I hate that I can only sleep with Ambien. I hate that I'm still in so much pain this long after my last surgery. I hate that I'm not back to "normal" yet, and I hate feeling that as soon as I AM back to "normal" and all healed up, I'm going to have my other breast removed and do this all over again. Tissue expander and all. And I HATE, most of all, that even AFTER I go through the pain - emotional, physical, mental - of having another mastectomy, and go through the tissue expander and the healing and the implant surgery and the healing, that AFTER all that, I STILL have chances of getting cancer. That's what LFS is. I can remove the body parts I can remove, hoping and praying I won't get cancer there. But you can't remove your brain and your colon and your blood and your fatty tissue.
Sorry for another depressing post, but I guess that's what 1-2 hours of sleep will do. I hate that I'm hating all these things three days before I'm about to embark on my (surprise location) bachelorette weekend with my best friends in the world.
I always feel guilty writing about and saying the things I hate, because I have so many things in my life that I love, and so many people. There's, without a doubt, more love in my life than hate, by a longshot. But I guess I can't ignore the things I hate either. Because they're there. They need to be addressed.
I almost have trouble posting this, because I feel it seems I'm not grateful for the things I do have, which I very much am. I think I'm just frustrated with the whole situation. I think I just want my life to not be filled with this stress and anxiety, because I feel I deserve more. But I guess if I really think about it, I do have more, and what I don't have, I'm making. I take control of the things I can, and change into good what I can. I think I have the strength and the power to always do that. I think that will never change. But I guess it doesn't mean I won't have my bad days. If we don't have bad days and we don't have things that make us mad, how do we learn, and how do we grow, and how do we overcome these things to become better? How do we recognize the good? How do we find the silver lining? Or, to sound less cliche, how do we find the glittered high heel in the stack of hay? (That's not right either...) How do we find our sunshine without recognizing what causes our rain?
I love Sean and Campbell. I love my family and my friends. I love the life I have, which is FULL of fun plans and parties and friends and family and love. I love that I'm getting married in a few months. I love that I had three bridal showers. I love that my bachelorette weekend is this weekend. I love that I'll be married to Sean, and that I'll have a family and a life with him. I love that Campbell will be a part of our lives for many years. I love that the people in my life love me. I love that the people in my life make me happy, every day. I love my house and my clothes and my willingness to keep going. I love how I can hate all these things, yet still recognize the good outweighs the bad, all the time, and I am literally one of the luckiest, most blessed people. I love every ounce, every grain, every inch, every morsel of my life and my world. I love how I KNOW everything will be OK, and everything turns out right in the end. I love how I know G-d is watching over me and the people I love, and he's taking care of us, and will make sure everything is exactly how it's supposed to be.
I love how no matter how little sleep I got the night before, or how badly I feel right now, I can pick myself up and feel better by the end of the day. I love how the people in my life contribute to this. I love how I know myself well enough to know what I need, and what I don't need. I love how I've learned that, yet am still learning that. I love how, despite everything I wrote in the beginning of this post, that I'll have the strength to always DO THIS.
I love how tomorrow I'll feel differently about the things I hate. They may still be there and I may still hate them, but I'll feel differently. That is a guarantee. I love how I've learned that.
Today I addressed what makes my storm, in hopes that there are sunnier days ahead.

Tuesday, January 10, 2012


Hi everyone,
A few things:
I know my post yesterday was really depressing. It was how I was feeling at the moment, and I just write how I feel. But it wasn't exactly me 100 percent. I'm still upset today, but have a better grasp on things, if you will, because of my appointment this morning with my psychiatrist.
So, yes, we're still waiting on the blood tests. I think it will probably be fine. Honestly.
Of course there's always the chance that it's not fine, but I think it will be. But I found out, that's not the point here, and may not even be why I'm so upset.
There's been a lot of anxiety caused by doctor's appointments and tests recently. The doctors I see are always poking and prodding and looking for something and running tests, and in turn, I am always, always ALWAYS waiting for results, which spins me into an anxiety spell, and almost forces me to shut down every time. It makes living life and going to work near impossible, and an every-day struggle to wake up and get dressed. I dread everything when I'm waiting for results. And then, when the results come back, I'm OK for a while, until the next appointment, and until the next test. It's a cycle. And there's two things I could say about it:
1. The LFS is still new to me, and I need "practice" living "this life." Lots of quotations there, but it makes sense. My psychiatrist said that the longer I go having tests and seeing them come back OK, the more I can (hopefully) get used to this. An example, on a smaller scale: you always worry about going to the dentist. Every time you go, you don't have any cavitities. This goes on for months, and then years. Every appointment, always cavity-free. So you worry less, because you see, time after time, everything is OK. I know going to the dentist and having or not having a cavity isn't exactly comparable to going to the doctor for LFS and getting tested for millions of different types of cancer. But my doctor said if I can go through all this, and learn a way to cope with the anxiety UNTIL each test comes back, and SEE that it is OK after, I can start on a new path. It could take years or I could never get there at all. Either way, essentially, I have to "practice" this - that is, going to doctor's appointments all the time, having them run tests all the time, and for the most part, having the tests come back normal. And then starting again. Part of the "practice" is me learning to DEAL (in a way that suits me best) with this new "life." I'm not sure if I will ever get used to it, or ever feel OK about it, but right now I'm still learning. I'm still "practicing."
So, instead of me saying "this is my life now," I have to say, "this is part of my life." And the parts that are unpleasant, I can practice learning how to cope with. Enter right now: running blood tests for Lymphoma for a lump in my neck that MIGHT or MIGHT NOT be a lymph node. Unpleasant. But, like the other bumps in the road, this is a bump too. And like the others, I go through them, and I'll get through this one, too. It just takes practice.
2. My psychiatrist and mother agree: unless an appointment or a test is pressing or an emergency, it can wait. Why put myself through this? I definitely need a break from doctor's appointment for my well-being and mental health. With the wedding now like 80-some days away, I literally cannot mentally handle having these appointments and then having them run tests for cancer. Like my dermatologist appointment Monday. Is that necessary?! I don't have anything for them to look at, and I just saw a dermatologist over the summer. Can I mentally handle them removing a mole (which I'm sure they will) and waiting for biopsy results to see if it's cancerous?! Honeslty, no, and I shouldn't. So I'm seriously debating rescheduling for after April. I know it's probably inevitable that I have to see my oncologist again next month, but maybe he'll push it back if my blood tests come back OK. It angers me to no end how these doctors don't seem to understand my mental state here. WHILE planning my wedding I fought breast cancer and was diagnosed with LFS, and NOW, NOW, when I CAN have one, I want a break. I want these doctors to understand while that I appreciate what they're doing, and I appreciate and am grateful for the high-risk screenings and tests and taking everything seriously, they need to consider my mental state here. I cannot handle any more tests or biopsies or ultrasounds or whatever. Not before the wedding. I wish people would take into account how MUCH I have to deal with right now. But they don't. Instead, it's test after test and waiting and more waiting, every time, to see if it's CANCER. Sorry, but no. It's not necessary. I wish I could cancel all of my appointments from now until April. But I can't. Instead, from now on, I'll ask if what the doctor is recommending is pressing and time-sensitive and a matter of life or death. If it's not, it gets pushed back. Time for me to take control. I can't live like this. It can't be good for me. I wouldn't be surprised if my "lymph node"-neck lump is in fact a lump of STRESS.
And that's all I have for today. Today I am practicing.

Monday, January 9, 2012

Welcome to my life

People have no idea, really. We can start there.
I have no idea, really. We can start there also.
I had two doctor's appointments today so I took off work. The first was a follow-up ultrasound of my neck lump. (the one they originally thought looked like a lymph node.) The ultrasound went well this morning. The radiology technician agreed it resembled a lymph node.
But then at my appointment with my oncologist - (sorry if my typing is fast and not good - I am going through a lot of emotions right now.) He said while the lump also looked like a lymph node, there was another "small spot" behind the lump that was "too small to characterize."
So he asked if I'd like to get a CAT scan done. But because of my LFS a CAT scan isn't really recommended unless it's an emergency because excess (or any) radiation can lead to the development of other cancers. So now he wants to check for Lymphoma. Yes, Lymphoma - cancer of the lymph nodes.
He's going to run some blood tests and will let me know how they came back, because he should be able to see from the blood tests if certain levels are elevated. If anything suspicious comes back, he can order a CAT scan or we can do the next thing. Either way he wants to see me in a month.
I KNOW all this extra precaution and testing and these follow-up appointments are for my LFS, and I probably don't have Lymphoma, but it is SCARY as hell when they have to look for it.
And the wedding invitations went out last week. We got a slew of RSVPs back today. My bachelorette weekend, for goodness sake, is coming up THIS weekend and they are worried about this LUMP! I can't stand it!
If this is something or not, it doesn't matter. (well, it does, because if I have cancer again I really have no words to say.)And I pray a million times a day I don't get cancer again, or that anyone in my life does..EVER.
It's the principle. No matter how many times I say it: "this is my life now because of the Li Fraumeni Syndrome," it doesn't help and it doesn't get better every time and it doesn't make me feel better. Welcome, this is my life, where I have literal convulsions sitting in the waiting room because I am so nervous, where every single test matters, where everything could be something or nothing, but they have to make sure it's either something or nothing, but because I have LFS it could COULD always be something. (cancer)
Is this a joke?
Is this a JOKE?!
Let me live my life.
My oncologist also ordered a physical therapy professional to help me with my stretching since my implant pain really isn't getting any better. He also set up an appointment next week with a dermatologist because people with LFS should get their freckles and moles checked every few months. He also prescribed me a higher level painkiller for my implant pain. And there I was counting down to the LAST DOCTOR'S APPOINTMENT BEFORE THE WEDDING. It was supposed to be HIM, except for the dentist (but that doesn't count) and my plastic surgeon. But no, now we've added two more, possibly three or more. One more appointment with him (and more if the lump is suspicious, or the one behind it is, and then one appointment with a dermatologist.) I mean, who knows if I should be scared about that. It's routine, after all?! But no, with me and with LFS NOTHING is routine. They could ALWAYS find something, or they could be worried about something or tell me something new. Something I went in there not thinking or worrying about. I'm literally a different person when I leave a doctor's appointment than when I enter. Convulsions of anxiety are gone, but a new cloud forms above my head containing overwhelming amounts of NEW worries and what-ifs.
This is my life. No clear, green grassy fields from now until the wedding. More mud. Muddy doctor's appointments.
I'll write another post when the blood tests come back.
Welcome to my life.
When I say I've had a bad day, I hate when people say, "Me too, I know what you mean."
So let me be crazy and let me be a little skinnier than you think is "OK" (I'm healthy, which is all that matters) and let me take Ativan when I need it. This is my life. Welcome.
Sorry if this depresseses you, but it's the truth and I've always told the truth on my blog, or else it wouldn't be real. Having LFS is an ugly, ugly way to live. I say that, yes, but I also said I could choose to live better and not let it take over my life. I'm still living better aren't I? Yes, but I'm also allowed to have my bad days. I'm human, after all. I guess I'm just doing my best all the time. But how am I expected to keep doing my best when I have doctor's appointments all the time and all of them end badly? (or most of them end badly) With new information and new worries? How does one get through that?! How am I supposed to ever get USED to that?
Wedding in less than 3 months. Some 20 RSVPs in already. Bachelorette this weekend. First dress fitting next weekend. Favors are in. This is all really happening. And the neck lump.
Once again, my life. Hi, hope you like it.
I love it, don't get me wrong. But not I'm pissed off at it.
Maybe tomorrow will be a better day. What I've learned from writing Pink and Pearls is that no matter how terrible I feel today, I WILL feel a different way tomorrow. It could be better or it could be worse. Either way, it will be different. That's all I have right now.
FOCUS: having fun this coming weekend, and our wedding. FOCUS. Not on "testing for Lymphoma" -- dirty, ugly scary words.
My life. Definitely blog-worthy, not that I ever asked it to be.

Tuesday, January 3, 2012

Fitness Activities Stimulate Cancer Survivors

By David Haas
Mesothelioma Cancer Alliance Guest Blogger

People who have gone through cancer treatments and have been lucky enough to enter into remission often do not feel lucky. The bodies of cancer survivors often take a long time to recover from the disease and from intensive and invasive treatments and surgeries. From mesothelioma to cervical cancer, colon cancer, and other common forms of this devastating disease, the person is generally fatigued, weak, and worn down once the battle has been won.
A cancer survivor’s personal doctor may often recommend physical fitness routines as a means for the person to recover at a quicker rate. Exercise, even in moderate forms, can stimulate the mind and the body and allow the patient to begin to feel motivated and refreshed. Natural endorphins are released through exercise and this improves attitudes, emotions, and perspectives, and also provides the person with a more positive outlook.
Many times, a new cancer survivor just coming out of endless rounds of treatment and/or surgeries, will feel he or she simply does not have enough energy or stamina to exercise. This is understandable; yet even a mild attempt to include ten to fifteen minutes of light exercise in a daily schedule can begin to potentially make a big difference in the person’s energy levels and physical capabilities and strength levels.
Walking and yoga are fitness activities that can be light activities that allow a person who is feeling weary from previous cancer treatments to approach fitness with caution. Slowly increasing workout times every two weeks will provide the person with a chance to build up to a healthy pattern that will possibly increase the overall health of the person. Exercise can be a social opportunity as well and this can allow the person a chance to relax and enjoy company during a mild walk around the neighborhood or at a local gym or walking track.
Sit-ups, pushups, stretching, and mild aerobics are also ideal fitness activities for people recovering from cancer and from the stress of cancer treatments. The National Health Information Center has valuable resources and articles on how fitness can improve the quality of life for cancer survivors and those currently going through cancer treatments.
Introducing fitness routines into a daily or weekly schedule may seem daunting at first to people just winning the battle on cancer, but exercising can be a valuable stimulant that can speed up recovery times.

Monday, January 2, 2012

Life is what you make it {Happy New Year!}

Wow! Where do I even begin?! Happy New Year! May 2012 (and all the years that follow) bring you nothing but health, happiness and love!
Our New Year's Eve was incredible. I would actually say this was my BEST New Year's Eve! Sean and I spent the night in center city Philadelphia at the GORGEOUS and ELEGANT Loews for our friend's Jessica and Jim's wedding! I wore a floor-length spaghetti strap red dress (my junior prom dress, thank you! - 10 years later!), and we literally danced all night long. We spent the night with Sean's sister Julie and her boyfriend Dan, and our friend Alissa and her boyfriend Peter. The food was incredible. The cocktails were incredible. The music was incredible. The view was incredible. It was a joyous occasion, and one of the few times I remember dancing freely, for hours on end, in virtually no pain, with not a thought in my mind except that I was happy and lucky and healthy and had so much to look forward to this coming year. 2012. Less than three months until we get married!
So let me run with that thought. Let me take that. That feeling I had on NYE. A carefree feeling. Sure, my chest was sore in the morning (did I bounce a lot or something?) but it was worth it. It was everything and more. A dream come true. So beautiful. Yes, I'll even go as far as to say it was a magical night. A beautiful event with the people I love. Who could ask for anything more?! Honestly.
Oh! And we got a dog! I'm not sure how much I actually touched on this in the blog, but Sean and I have been wanting a dog for a really long time. Pretty much since we started dating. We've been to our local SPCA a few times, but nothing worked out. And then a few weeks ago my co-worker Buffie told me her dog just had puppies. So I called her up, and on our way to Philadelphia Friday afternoon, and we stopped by. We said "hello" to some of the puppies, and pretty much fell in love. They were seven-week-old chocolate labs. One in particular took to us more than the others. So we told Buffie we'd think about it and talk it over, and then give her an answer Sunday. On the way out of Buffie's driveway, I looked to Sean and said: "What do you think?" And he replied, something along the lines of, "do we really have a choice?"
One of the puppies (we later named him Campbell. More of that later), came up to us and was licking our faces, and he even let us hold him without a fight. He was just so cute. We looked at the picture we had of him all weekend, thought of names, and called both of our families. Then it was decided by Saturday afternoon. We were getting the dog! We were in love with the squishy-faced puppy with the purple string tied around its neck.
I called Buffie and told her the news, and then Sean and I immediately went to Petco and got everything we needed to start a home for little Campbell, who, now is only 7 weeks and maybe only 10 pounds or so, but will grow to about 70 or 80 pounds! We got a crate, some food, some bones, a toothbruse (and peanut butter flavored toothpaste, of course!), some treats and some balls. And a leash and collar. Blue. We brought him home yesterday, and ever since then (besides him crying hysterically in his crate until after 3 a.m. this morning) has brought us nothing but joy. Buffie was kind enough to give us Campbell for free as a wedding gift!
I honestly have no words. I'm so happy. And still letting it all sink in. My first doggie! I know this will take a lot of work. (Training a puppy, especially). We'll have to do things a little differently now. Campbell will take up time, energy and money. He'll need to be trained, taken to the vet. But I know it will be worth it, and I know we're ready. We had originally wanted to wait until after the wedding, until things "settled down." But can I say this? Will things EVER really "settle down"? Sure, it's a lot to take on right now, but this opportunity came, and we took it. And as far as the "settling down?" Our lives aren't going to slow down for a while. Not after the wedding, not ever. Because after the wedding will come the honeymoon. After the honeymoon will come my other mastectomy. After that (multiple surgeries and a long healing and recovery process) will come time to start a family. So now is as good a time as any. We want to live life fully. And we want to do so now.
So we started 2012 with a new puppy! This year is going to be amazing. We're getting married in three months and we have a new dog! So much to be happy about, so much to be thankful for. So this shows me (both the NYE wedding and getting Campbell) that life really IS what you make it. I still have physical pain and I still have worries and anxieties, and I know I've said it a million times, but the LFS diagnosis really threw my off course and forced me re-think a lot of things about life. Mostly what I thought I knew, but didn't, and what this all meant for my future and the future of me and Sean and our potential family. But today, in thinking about how great New Year's was, and in thinking about this little addition to our family, I realize, yet again, life (the really, really amazing things in life) ARE bigger than all this other stuff. Life is what you make it. I could be sad every day that I have LFS. I could be worried every day about getting cancer again. I could wither in pain and choose not to move. Or, I could dance. I could get a dog. I could move forward, above and beyond. Sure, sometimes we have to try a little harder to make ourselves happy, or not stressed out. We are always trying, but sometimes it take more effort than other times. But I've learned that we must always, ALWAYS put into our lives things that are good for us and people who love us unconditionally. When we do we are reminded of what really matters. And when we are reminded of what really matters, our spirit strengthens. Our hope soars. Our hearts brighten. And we can keep going on, keep living. Keep living in an inspired, strong way.
So enter 2012. A new year. A year of hope. The year we got Campbell. The year we'll get married. The year we'll go on our honeymoon. The year I'll take the next step in taking control of my health and get another mastectomy. The year of 2012. Of good, happy things. Why? Because I'll make it that way.

And to conclude this post, here is Dear Abby's Jan. 1 column:
DEAR READERS: Welcome to 2012! While the last year has been tumultuous for many of us, a new one is here, bringing with it our chance for a fresh start.
Today is the day we discard destructive old habits for healthy new
ones, and with that in mind, I will share Dear Abby's often-requested list of New Year's Resolutions, which were adapted by my mother, Pauline Phillips, from the original credo of Al-Anon:
JUST FOR TODAY: I will live through this day only. I will not brood about yesterday or obsess about tomorrow. I will not set far-reaching goals or try to overcome all of my problems at once. I know that I can do something for 24 hours that would overwhelm me if I had to keep it up for a lifetime.
JUST FOR TODAY: I will be happy. I will not dwell on thoughts that depress me. If my mind fills with clouds, I will chase them away and fill it with sunshine.
JUST FOR TODAY: I will accept what is. I will face reality. I will correct those things that I can correct and accept those I cannot.
JUST FOR TODAY: I will improve my mind. I will read something that requires effort, thought and concentration. I will not be a mental loafer.
JUST FOR TODAY: I will make a conscious effort to be agreeable. I will be kind and courteous to those who cross my path, and I'll not speak ill of others. I will improve my appearance, speak softly, and not interrupt when someone else is talking. Just for today, I will refrain from improving anybody but myself.
JUST FOR TODAY: I will do something positive to improve my health. If I'm a smoker, I'll quit. If I am overweight, I will eat healthfully -- if only for today. And not only that, I will get off the couch and take a brisk walk, even if it's only around the block.
JUST FOR TODAY: I will gather the courage to do what is right and take the responsibility for my own actions.
Photos by me

Still Being Molly


Photo by Marjie

Photo by Marjie

Photo by Marjie

Photo by Marjie