Sunday, December 23, 2007
Sunday, December 23, 2007
Current mood: hopeful
Well the time is almost here, time to say good-bye to 2007 and hello to 2008. I have to admit I am looking forward to 2008 and putting 2007 behind me! This past year has been HELL, for the lack of a better word. I've had a lot of highs and lows. It seems more lows than highs but I try not to dwell on the lows too much.
One of my highs is when my little brother proposed to his girlfriend. I'm so happy for them and I'm really excited about getting a sister. The wedding is planned for June of next year. I just hope I have enough hair by then....haha.
Of course one of my lows, the biggest low, was being diagnosed with the BIG C. It's funny in the beginning I would hear people talk about how cancer had changed their lives and the good things that came from it. I thought these people were crazy! But looking over the past year, I can honestly say I wouldn't change a thing. Yeh, cancer sucks, but it's what you make of it that matters.
I've met some new friends, my cancer friends and I love them and thank God for them, cause they get it! They get me and can relate and know exactly how I'm feeling.
I found a great support group called i2y, or I'm too young for this. Alot of my cancer friends have come from this support group. I met the founder of the organization, Matthew Zachary, at a cancer conference in NYC and we have become e-mail buddies. His organization has been a blessing in my life. I've gone to some of their social events and even though I was going through chemo and wasn't exactly at my best, I enjoyed being among the "land of the living". Matthew has also been very encouraging and with out his encouragement this blog wouldn't exist, so thank you Matthew!
At one of the social events, I met the author of the book, Breastless in the city, her name is Cathy Bueti and it is an honor to call her my friend. After meeting her, she was so sweet and sent my a signed copy of her book. I read the book in just a couple of days and when I was finished I sent her an e-mail and as we say....the rest is history. She has helped me so much with my cancer crapness, I love you Cathy!
I also met a cancer friend in the chat room of The Stupid Cancer Show. The Stupid Cancer Show is a live web-cast that Matthew does on Monday nights. Check it out if you want, http://imtooyoungforthis.org/stupidcancershow/ . There is a chat room there too and that is where I met Katie. The funny thing is, she lives one town a way from me, what a small world.
And then there is my dear chemo friend, Holly. We met at Holly's first chemo and I was already bald and a little over half way done with my chemo. We share the same fabulous chemo nurse, Helen and yes we share the same God awful oncologist, Dr. N. That first meeting, Holly had so many questions, when did my hair fall out?, what foods made me sick? It was so nice to help her with the answers to those questions. Looking back I wish I had someone to ask those questions to myself. The sisterhood of breast cancer, the club no one wants to join.
I love all my new friends and just think, I wouldn't have met any of them without cancer. So I guess good things can come out of cancer.
So here's my list of some of the things that I won't miss from 2007:
people staring at my bald head
Good-bye 2007 and Hello 2008.
I can't wait to reclaim my life!
Saturday, December 15, 2007
Current mood: sad
I went to see one of my doctors yesterday, Dr. L. If you've read my other blogs then you know that I love Dr. L. She is my breast surgeon.
She was the one that told me that I had the BIG C and sent my world spiralling out of control. I know what you're thinking, and why do you love this woman? I love her for many reasons but yesterday I can add to the list....she told me that it was OK to cry and feel sad. She told me that I had been through alot in a short period of time and that the surgery I had was very traumatic and that it was normal for my hormones to be all over the place.
It seems like that is ALL I do lately is cry. I cry because my hand is still NOT OK. I still cannot feel my left thumb, index finger or middle finger. I cry because lately the pain shooting into these fingers is unbearable. Dr. L believes that the pain is a "good thing". It is a sign of my nerve(s) healing. I should be thrilled, but all I do is cry.
I cry because I want my life back!
I cry because I feel the world going on without me. I know I have to recover but.....
Maybe it's the time of year. Everyone is getting ready to enjoy the holidays and all I want to do is cry! I would give anything to change places with someone. You hear people complaining about standing in long checkout lines or getting stuck in traffic. I will trade anytime. You take my pain and I'll take the hustle and bustle of the holidays.
I try so hard to keep a positive attitude and a smile on my face, but sometimes it's really hard!
I also talked to Dr. L about my staging. She told me since there was NO lymph node involvement, I would be Stage 1. I told her, I should be thrilled and happy and relieved, but all I want to do is cry. She said it was my hormones and that it was OK.
I want to be happy! Hell, I should be happy, right? I've survived breast cancer! I should be celebrating....then why am I crying?
You know the expression....."this too shall pass" I guess I just have to wait and see.....
Sunday, December 9, 2007
Sunday, December 9, 2007
Current mood: Outraged!
I'm sure you've heard the expression, "What do you think money grows on trees?"
I believe that the drug companies think this to be true.
Let me just start off by saying, I am one of the more fortunate ones here in the United States. I have excellent health benefits!
But what about the millions of others who don't.....
Everyday when I go to get my mail, there is always some type of doctor's bill or my health insurance sends me another bill of summary. This has been going on since the end of February, when my cancer crapness journey began.
Right now I'm just paying my co-pays. I met my deductible way back in March, so in a way everything after my co-pay is free shall we say....till January 1st and I have to pay my deductible again.
What gets me is the cost of some of my drugs. I get these bills of summary and it just blows my mind!
Over the summer while I was going through chemo, I needed a shot every other week to boost my white blood cell count. The cost of this shot....$3000. Now I needed 6 of these, you do the math.....$18,000. I can't even imagine having to pay this.
I just got another bill of summary and on this was the cost of a drug I need to take for a whole year. I get this drug through an IV every 3 weeks. The cost of this drug.....$6000. Figure that one out....52 weeks in a year divided by 3, we'll just round it off at 17 and then multiple that times $6000. That would be a whopping $104,000. I couldn't afford this drug if I didn't have health insurance.
I feel like I'm doing a commercial. Nuelasta shot: $3000. Herceptin treatment: $6000. Never getting cancer and staying healthy: priceless.
But seriously who the hell puts the price tags on these drugs! I can't even imagine not having health insurance and having to pay those bills. The sad thing is there are people out there that have to do this......I thought the United States was supposed to be the best country in the world? After watching Michael Moore's movie Sicko and dealing with my own cancer crapness, I'm really beginning to wonder....
Tuesday, November 27, 2007
Tuesday, November 27, 2007
Current mood: confused
Mirror, Mirror on the wall who's the fairest of them all....
My question is Mirror, Mirror on the wall who's that stranger staring back at me?....
If you've been in the hospital for any length of time then you can relate. I was recently in the hospital for 6 days and when I returned home I didn't recognize the person looking back at me in the mirror.
When I went into the hospital my hair was just coming back, peach fuzz shall we say and my eyebrows and eye lashes were sprouting. Now I'm not saying I have a full head of hair now, but you can definitely tell the outline of my hair and the color is coming back. WOW, in only 6 days!
But what about my face, it looks so pale, never mind skinny. Sure I dropped about 15 lbs, but WOW look at this face! Are those really eyebrows?
Who exactly is this person?.....
Of course I have to walk around all hunched over do to my surgery so that image doesn't help. I hope this isn't any indication of what I'm going to look like when I'm 80....ha ha!
It's funny cause I'm not sure why this is so shocking to me. I mean yeah, I was in the hospital and believe it or not the world goes on. Sometimes it feels like it goes on without me.
I mean did I expect my hair and eyebrows to not grow because I was in the hospital?
It's kinda the same way I felt when my Mom died. My world was crashing all around me and it felt like time had stood still, but really the world was still going on, just without me.
I guess that's the way I feel now, here I am recovering from my surgery and trying really hard to deal with all my cancer crapness, but the world outside continues and I feel like it's continuing without me.....
Tuesday, November 20, 2007
I’m scared because I’m not sure what the future holds….what is it going to be like with fake boobs. What will they look like or feel like? Will I be OK with the scars? What about dating…am I going to meet the man of my dreams and is he going to be OK with my scars and my fake boobs. I guess if he was the man of my dreams he would have to be OK with it or else he wouldn’t be the one for me….at least that’s what all my friends keep telling me.
I’m sad because here I am going through all this girly stuff and I miss my Mom so much. See my Mom passed away a little over 3 years ago and it still hurts today. Don’t get me wrong I love both my Dad and Step-dad very much but let’s face it having breast cancer and talking about fake boobs and meeting with plastic surgeons would be a better fit with Mom than with Dad. I know my Mom is looking down on me right now and I know she will be with me tomorrow. She will be my angel and will guide me through yet another “crapness” event.
I’m angry because I feel like my boobs have let me down….how dare they get cancer! Maybe it’s my fault. Maybe I didn’t show them enough attention. See I’m not one of those boob girls. I don’t shop at Victoria Secret and get the big fancy push up bras nor have I ever exposed my cleavage. Maybe they felt unwanted. Isn’t it funny how we really want something as soon as someone says we can’t have it anymore?
I promise I will start shopping at Victoria Secret…..just don’t take the boobs!
Monday, November 19, 2007
Monday, November 19, 2007
Current Mood: scared shitless!
As my surgery approaches, I’m starting to get more and more freaked out! It’s the BIG "fear of the unknown" again…
Like the day I was diagnosed with the BIG C. I was thrown into the "fear of the unknown". My life would change forever! Would I die? Yes, the "fear of the unknown"….
Everything along this cancer crapness journey has been the "fear of the unknown"…..
Waiting in that little cubicle hoping that my mammogram comes back normal……
Having the ultrasound and looking at the doctor’s facial expression…..
Laying as still as you can in that closed tunnel having your MRI.....
Having the biopsy……and waiting the endless days for the results....
My original surgery…..the fear of the cancer spreading…..and finding out that it had…
That’s what lead me to my chemo…..yet another "fear of the unknown"…..how sick would I get? What will I look like without hair? Will I be able to work and continue to lead a normal life…..whatever normal may be.
Lately my life has been filled with A LOT of “fear of the unknowns” what about when you go for your scans….for example my MUGA scan and hoping that my heart is still functioning properly….praying that the chemo hasn't done any damage....there’s that fear again.
Now I have the BIGGEST fear yet…my upcoming surgery.
Did I make the right decision......double mastectomy?
What about the reconstruction......did I choose the right one?
Will I be OK with the scars……will I be able to handle two fake boobs?….will I ever date again? Yes, it’s the “fear of the unknown" creeping back up on me.
Will I ever have my life back. I just want everything to go back to normal. Can I just erase time and go back to March 7, 2007 before all my cancer crapness started…..
The answer is NO! I need to be strong and face the BIG "unknown".
Sunday, November 18, 2007
Current mood: scared
Let me just start off by saying I truly appreciate everyone wishing me well with my upcoming surgery. I love my family and all my friends and I know they mean well, but what exactly does it mean when someone says….I wish you luck.
What is luck? To me I always thought luck was something you needed when you were going against the odds.
This past Friday was my last day at work for awhile shall we say. As I was leaving and saying my “good-byes” to everyone, that same phrase kept coming up….good luck with everything or good luck with your surgery.
Do I need luck with my surgery? Am I going against the odds? I’m starting to freak out!
Here is a little history about myself for those of you who haven’t read my other blogs. I was diagnosed with breast cancer on March 8, 2007. I just finished my chemo on October 2nd and I am scheduled to have my surgery this coming Wednesday, November 21st….yes the day before Thanksgiving….how crappy is that! I am having a double mastectomy with immediate reconstruction.
I have such a wonderful family, see I just came home from having “Thanksgiving” and when I left today, everyone was wishing me “good luck” with my surgery. Which lead me to this blog….
OK, maybe I do need luck….I did pick a pretty complicated reconstruction. I opted to have what is called a TRAM reconstruction…..and with out getting too technical, it is when they take your own tissue from your belly to create your breasts.
The surgery is supposed to take 12 hours….yes I’m going to be under anesthesia for that long…..do I need luck with that?
I mean HELL, I’ve been diagnosed with cancer…..I think luck isn’t exactly on my side…..maybe I do need that luck after all.
I know sometimes we are put in awkward situations and don’t know what to say. I’m not really sure what I would say to someone in my shoes…. I think I would wish them well, but luck, I’m not sure about…..
Current mood: thankful
What makes a good doctor…ask anyone and I'm sure each one will have a different answer. For me it's all about "bedside manner". Let's face it cancer can be a pretty scary thing and having the right doctor can make all the difference.
I have 3 doctors that I have been dealing with since my diagnosis back on March 8th of this year. My breast surgeon Dr. L, who is fabulous! Dr. N is my oncologist and if you watch the TV show Side Order of Life, you'll get it when I say, Dr. N is NO Misty Reines. And then there is Dr. S, he is my plastic surgeon and he has grown on me.
I met Dr. L after I found a lump in my left breast. She is my breast surgeon, so she was the one that did my biopsies and surgery and yes she was the one that told me that I had the BIG C. I remember that night like it was yesterday. It was 8:45 p.m. and I was watching American Idol and I was just about ready to see who was getting the boot when the phone rang. Even though my world was crashing all around me, Dr. L put me at ease. From day one when I met her and she did my biopsy, I knew I would love her. That first day in her office, I was so scared…..she walked in and I burst into tears, she quickly calmed me down and told me "we" would get through this together. Dr. L has fabulous "bedside manner". She shows compassion and truly makes you believe that even though things are scary…..it's going to be OK.
Dr. S is my plastic surgeon. In the beginning I kinda didn't like him. My first visit with him, he seemed a little cold. Looking back on that day…..I believe he was a little pre-occupied. He was wearing his scrubs and his nurse kept interrupting and he was getting pulled away for phone calls…..I think he had a sick patient in the hospital. When I met with him the second time things were totally different…..a complete 180. His "bedside manner" was totally different. He did show a side of compassion and caring. We even joked a little, which is sometimes my way of dealing with a stressful situation. I remember he said he wanted to take my picture for my file….as I stood there posing for the picture….I joked and said, "I better not find these pictures on the internet!" He laughed and said they were strictly for my file. He then asked if I had anymore questions and I said no. He said he would see me on the morning of my surgery and he would be drawing smiley faces all over me….Good I said, I'll need them because I'll be too busy crying. His joking tone quickly changed, and he told me that it was OK to cry. He said I could cry the day of my surgery, I could cry right now if I wanted or I could cry tomorrow. I knew right then and there that like Dr. L, Dr. S had it…… "bedside manner".
Now Dr. N is my oncologist. Like I said earlier she is NO Misty Reines. I still haven't figured her out. I do know that I don't care for her. I know what you're thinking…..get another oncologist. Before I get too much into Dr. N, I have to tell you some history. I was originally supposed to have my surgery back on June 27th. I was meeting with Dr. N on June 15th to just touch base with her. That day would turn out to be one of my worst days ever! Dr. N came in, asked me a few questions…..yes her tone with me was very cold. She then excused herself and left the room. When she returned she boldly stated that she had cancelled my surgery and that I would start my chemo on Monday, June 25th. Talk about a whirlwind. Here I was mentally preparing myself for losing my breasts to now having to prepare myself to get poisoned…..BIG difference! I sat there along with my Dad and Auntie Judy in shock. She told me I could get a second opinion if I wanted, but she was head of the department so everything would come back to her anyway….WOW!
Dr. N has always been cold. When I see her for office visits, she comes in and the first thing out of her mouth is I'm sorry, it's been a busy day……her excuse as to why I'd been sitting there for the past 45 minutes. She sits down and opens her laptop and off she goes typing away. She has never asked how I am doing. It's always….what are your side affects…..like the chemo is the patient, not me. She also talks to me like I'm her colleague, using BIG medical terms. OK….I did graduate college, but sorry I didn't go to medical school. I've learned to just ask my chemo nurse anything I didn't understand.
With my surgery coming up next week, I had to meet with Dr. S again. A refresher appointment shall we say….I met with him before, but with my surgery being cancelled and my chemo lasting 16 weeks….he just wanted to see me again. As the nurse called my name, I entered the hall with all the examining rooms. I followed her to my room and as I walked past Dr. S's office I hear this big……HEY Jill!... how are you?....how've been, you look great!......WOW! a big change from what I've been dealing with over the past 16 weeks. A doctor who cares……can that be?
My visit with Dr. S went well, like I said it was just a refresher appointment, but I took even more away from that visit….he gave me back my faith in doctors.....he showed me that some doctors really do care and show true compassion and have great "bedside manner"...... thanks Dr. S.
Current mood: angry
OK.....today is the day I start to write my essay on "The way society treats chemo patients".
Yesterday was the final straw. I was in Big Y doing some grocery shopping....yes people with cancer do go grocery shopping!....when I noticed this older woman walking down the aisle toward me staring at me and my bald head the whole entire time. In the past, when people would do this to me, I would look down or look away. NO MORE! I looked this woman right in the eye as she continued to stare at me. She looked at me and then looked down at my wrist, like she knew what my "livestrong" bracelet stood for, yet she still continued to stare. As we passed I even noticed out of the corner of my eye that she turned and looked back at me....like her head spun around. I could feel her eyes still staring at me as I walked away. All this anger must have being building cause as I walked away I said in a loud voice, "What are you staring at, you've never seen someone with cancer?"
In the back of my head I can hear my Auntie Judy. Past conversations about this and she would always say that people are probably staring because they notice how young I am and how terrible it must be for me to have cancer. I say.....NO MORE EXCUSES for these people.
I understand that people are going to "look" or do a "double take" but to "stare" is so uncalled for and so cruel. Do these people realize how it makes me feel? Do they realize how much it hurts? I have to admit after I did this I kinda felt bad for the woman. Maybe I should show more respect for my elders. But this woman should have known better, she wasn't a child. NO, the children don't stare....it's the adults that stare....aren't they supposed to know better. I think about my Grandma and what a wonderful person she was and I know for a fact she would never stare at anyone. And I know if she were here today, she would know exactly what to say to me to make me feel better. So no, I'm not excusing the woman at Big Y!
I have been through ALOT since my original diagnosis on March 8th of this year. I've been poked and prodded and bioposed and cut open and scanned and hell I even been poisoned and yes, I've lost my hair. But NOTHING compares to the "stares" I get from people. That hurts the most. And even as I write this essay I have to stop and wipe away my tears because it still upsets me. As I'm crying, Maddy comes to my side. Maddy is my dog, but she's more than just my dog, she has been my little angel through all this. She loves me no matter what and you know what, she doesn't stare at me and wonder, "where did all of mommy's hair go?" No she licks my tears away and still loves me and accepts me for who I am not what I look like.
It's funny when Dr. Lee first told me I had to have chemotherapy and that I would lose my hair, I thought I would be OK with it. I"m tough, right. I still think I'm tough, I just think society sucks. Who gives someone the right to stare at me and make me feel uncomfortable. Who gives someone the right to stare at me and judge me. Who the hell do they think they are. Maybe my Mom raised me better. I was raised NOT to stare at people if they looked different. I know we all do a double take if we see something out of the ordinary, but to "stare"......
OK, so they want to stare......how about stare and then maybe smile at the end.....why not try and make me feel good. Why do they stare and make me feel like crap and want to cry. Don't they know I already know I look like crap. No woman going through cancer and chemo wants to be bald.
I remember the day most of my hair fell out. I was taking a shower and washing my already thinning hair. I noticed the water in the bathtub starting to rise. I knelt down to wipe away the drain, not realizing at the time that it was my hair falling out that was causing the drain to clog. Now keep in mind I had buzz cut my hair so that it was only a 1/2 inch around my head. As I reached down and scooped up an over flowing handful of hair I almost got sick. I knelt down in the shower and just balled my eyes....you know that overwhelming cry when you can't catch your breath and you start to hyperventilate....yeh, that would be the one. Now I knew I would have to face the mirror. I remember standing, drying myself off and being so afraid to look in the mirror. See I have one of those huge over the vanity mirrors. There's no where to run in my bathroom. I stood there looking at the image in the mirror, was that really me.....I didn't know who this person was looking back at me. The sad part was that not all of my hair fell out. I would say I was about 95% bald. Those other hairs were still holding on for dear life. I have to admit I looked kinda scary. As I stood facing myself in the mirror, I now realized that I really did have cancer. I really don't think it hit me until that point.
I went through my chemo during the summer months so wearing a wig was out of the question....too hot, but to be honest I really didn't want a wig. I opted to wear bandanas and hats and turbans. I sweated my ass off wearing these things! Who was I kidding or what was I trying to hide. People stared at me no matter what I did. If I wore a bandana...they stared. If I wore a hat.....they stared. My friend Katie asked me once, "Why do you wear a hat or bandana, for yourself or for everyone else's comfort?" That was a great question. I told her I did it for both. I think as a person with cancer, we are always trying to make sure everyone else is comfortable, we forget that we need to be comfortable....I remember when I was first diagnosed and telling my family and friends and always making them feel like everything was going to be OK, when deep down I had no idea if I was going to be OK. Maybe I was wearing my hats more for them then for me.
I remember in the beginning my Dad told me it was all in my head, the people staring at me. I actually began to believe this....maybe I was paranoyed. Then one night, my friend Danielle and I were out at Walmart and this woman was staring at me. Danielle was ready to kick that woman's ass! I chuckle now, thinking back. I love Danielle and love the fact that my friend was willing to stand up for me. But the best was the night my Dad and I were in NYC and we were standing on the platform waiting for the subway, when this woman came walking toward us. She was all dressed up in her business suit. She stared at me the entire time as she passed by us. In disgust I looked over at my Dad and asked him if he saw her and he shook his head yes. I told him in an angry voice......THAT IS WHAT I AM TALKING ABOUT! I think he finally realized what I go through on a daily basis.
Well I'm happy to say my chemo is over and my hair or should I say peach fuzz is starting to grow. I've returned to work and I made a decision. I've decided to go back to work and face the world bald.....THAT'S RIGHT NO MORE HATS!
I saw an interview with Melissa Etheridge on the Tyra Banks Show the other day and she so inspired me. She herself is a breast cancer survivor. She talked about her past performance at the Grammy's and how she performed bald. She said she wanted to stay true to herself and not hide behind a wig or hat. Thank you Melissa, you've given me the courage to face the world bald. After all, what do I have to lose, society is going to stare at me whether I'm wearing a hat, bandana or turban, so why not just wear my own skin......