CHEMOPAUSE!

     Chemopause! Yep, that’s what I named this; it’s what I am going through right now, kind of like a Cancer patient’s menopause- but with Chemo being paused. There was no other word for where I am right now, so I made it up. Makes people laugh when I say it, so it works for me. 

      I had my last chemo on August 10^th, had to get fluids the following week for dehydration. Need to schedule my Pet Scan and Cat Scan to see what happens next in my warped life. So I won’t say out loud that I am done with chemo, only “paused”. I have learned in the past 12 months not to get excited about anything. For every time that we thought something good was happening, we got thrown under the bus again (seemed more like being thrown under some supersonic high speed train). I’m not being pessimistic, I am being REALISTIC. I thought after surgery in February that I was done with chemo, but that wasn’t so and I restarted in April. I figured the second go at chemo would be easy, wrong again…..got a port, had reactions to my chemo cocktail and then a change up in the cocktail, followed by 2 platelet transfusions, a hospitalization, neuropathy, my hair started falling out again, then it stopped falling out, a summer full of overwhelming tiredness and blahness. To be honest it’s been a rough 4 months.

               It’s October now, its chilly out, the leaves are turning colors, I have hair again, tight curly chemo hair (so much for the straight hair i wanted) and I am finally starting to feel human again, like one of the living, instead of the walking dead. Little by little while on Chemopause I am getting some of my strength back, I’m not totally “me” yet…I still miss “me”.

               My blog profile pic has been chosen to be in the 2012 Expressions of Hope Calendar, for the American Society of Clinical Oncology.  I am so excited about this!!!!!! Hey, I get to be a calendar girl and I didn’t even have to take my clothes off- just my hair!! Pretty cool isn’t it? J

               Yesterday was 1 year since I went for the scan that found the mass on my lung. October 18^th is one year since my lung biopsy and October 20^th is one year since I was diagnosed with Cancer. One year since my world and my priorities changed drastically. Bizarre that a year has gone by…so much lost, so much found……..among the losses were the ”friends” who disappeared, the ones who took off, running away from me and cancer, the ones who could not deal….funny how some of them walk right past me in a store and don’t know it’s me anymore. But in retrospect they are minor in the grand scheme of things for me.  It’s been 1 year since my real friends stayed and helped me and nursed me through the hell I have going through, they stayed for this ride and I am eternally grateful to them. One year since my family has all pulled together and became passengers on this ride, my mom, my siblings, uncle and cousins from all over this world, bringing me their love and helping me through the darkest journey in my life. I don’t think I could have gotten through this year without them!

               So, here I sit on Chemopause, waiting and at the same time, not wanting to schedule my scans. Not wanting to know any answers right now, just wanting 1 month for ME! A “Rebecca Month”, no tests, no chemo, no blood work, no answers, whether the answers are good or bad or ugly. I just want this 1 month to feel like a living human being, to be ME…..Rebecca, Becki, Rif and the Rebel that I truly am. I don’t think that’s asking too much! J

Stay tuned

 xoxo

When I said I wanted new Plates…I meant kitchen plates! Jeez!

I guess I need to be more specific in things I wish for…..It’s only July 11^th and this month is not going as smooth as I planned. My new chemo is wreaking havoc on my body and my body is fighting back, but losing. I wound up in the hospital on July 1^st, with 102 fever and some sort of infection. So proud of my 15 year old son Michael for being so grown up, we had to call the ambulance to take me, and it was just the two of us home. The neat thing was that my older brother was driving the ambulance that night, and he is a hell of a driver! Michael acted beyond his years while dealing with the docs and nurses in the ER and placing calls to family members. He amazed me!

Spent July 2^nd and 3^rd on the Oncology Floor at Bryn Mawr Hospital, fever of unknown origin…got out of there Sunday night, with the promise to return if fever came back. All my blood work counts were whacked out, white blood cells, hemoglobin, red blood cells, platelets. What a mess!

               So this is where my heading comes from….instead of new kitchen plates, I wound up needing a platelet transfusion again. I had my first one- 2 bags of donor platelets on June 9^th. I had my 2^nd one on July 6^th. Hence, the word Plates! I went to my oncologist on the 6^th for follow up blood work and my platelets dove from 25 (in the hospital) to 11 (normal range is 140-440). Medical term = Thrombocytopenia. I am also Anemic. When your platelets are too low, you can get petechiae hemorrhages on your legs (like the marks left by hickeys-but spotted), nosebleeds, bruising, bleeding that won’t stop….go figure I got all of that! Not fun!   They only ordered 1 bag this time around and I had to go back for blood work on Friday to see if I needed a second bag. I didn’t need a 2^nd bag of plates. My platelets went up to 71 with the one bag. Now, we wait to see if they have gone higher. I go to see the oncologist on Wednesday, for consult and chemo.

               I’m tired and really want to feel like myself again…I totally miss having energy. The tired you get with cancer/chemo is so incredibly different than regular long day at work, run around, make dinner etc tired. It’s a tired that no amount of coffee will help, it’s a tired that makes it hard to get up off a couch to get a drink of water, it’s the worst tired you can imagine. It’s a tired, that if the world ended, you’d still find me laying on the couch. While your body is so tired, your brain wants to do things. If only the 2 would cooperate!

               I never really let myself go through all the emotions after I was diagnosed with cancer. I mean I was extremely upset, sad, worried, scared…but I have finally hit on the one emotion I have kept bottled up…I am ANGRY!!! I want to throw things, (plates-LOL), I want to go somewhere like the Grand Canyon and scream until I have no voice left. I want to punch and hit things. I want my life back! But I can’t throw things or hit things; I can barely lift a gallon of milk, my muscles don’t seem to be working right. I can’t travel right now, and I don’t have the energy to scream. I’m royally pissed off! I finally asked WHY ME last night. { there is no answer for that question...for any cancer patient}

               You know how people will ask “so how are you doing?” and you automatically respond “I’m good, how are you?” I have a new response now a days, I just say “I’m feeling kind of cancery”…for me that covers all the range of emotions, all the physical changes and the things that go on in your mind when you have cancer. It really does suck!

I try so hard to stay positive, while feeling cancery….so here goes, I don’t want to end this entry on a negative note…..

So on a positive note: My beautiful stargazer lily plant bloomed and it smells so amazing! I got a great picture of a katydid on it today! I have baby hummingbirds flying around my yard, and I hope to get lucky and get a picture of them!

xo

Bec

Waiting…..wishing…..

Wow, I realized I haven’t posted anything in a month, not that people are beating the door down to read my stuff! But for those of you that are reading my blog, thank you! xo

It’s been a crazy month. Was doing ok with the new chemo until my liver enzymes got funky and my platelet count bottomed out last week. I got my first ever platelet transfusion on Thursday. That was interesting to say the least, looked like cloudy yellow pee in the iv bag. EW! I’m not too happy that my body is reacting like this to the chemo, it makes me really tired and I feel useless. I meet with my doc on Wednesday and the hope is that my body was boosted into making its own platelets and bone marrow from the transfusion. If that’s the case, then I can get my chemo on Wednesday, if not, then it all gets delayed. I have so many questions and some answers, but I’m stressing out a bit.

I promised to keep my blog upbeat and not sad, but sometimes it’s not easy to keep that smile going and make light of things that are happening.  I’ll admit it, I am scared.

It’s funny…a year ago, I told my husband, I need a break from life! Um, yeah this was NOT what I meant! If you know me, you know that people have always said “you are constantly running nonstop, when are you going to slow down?” my answer was always “If I slow down or stop, then you know something is seriously wrong” Go figure huh?

We are coming up on the 1 year anniversary of my Dad’s death from cancer on June 28th and that in itself is hard enough without going thru my chemo and the ups and downs I am experiencing.

I am learning to enjoy the simple things in life though and can sit on my deck for hours listening to the birds and watching the butterflies in my yard. I’m waiting on my 2 huge butterfly bushes to bloom soon! Can’t wait!

Bec

Pinning Ceremony!

Last night was awesome! My daughter, Rachel earned her Radiology Technician pin!! The ceremony was really beautiful and we placed her pin around her neck. It was pretty emotional. She will graduate from college tomorrow! I was so glad that chemo was delayed this week, I actually felt like a human last night!!
Here we are, my husband Walter, Rachel, Me and our son Michael!

Here's to good things!
Bec

Time flies and other things...

Wow! So in just a few hours, we will attend a Pinning Ceremony for our daughter Rachel. She will receive the Radiology Technician pin! This is so exciting, she has worked so incredibly hard for 3 years to achieve this!! Rachel will graduate Harcum College as a Rad Tech on Saturday and I am so thankful to be here for this!! It amazes me how fast time flies by! I swear to G-d she was just a tiny preemie a few years ago!! I could have sworn I just graduated from there, but my friends have reminded me that happened 28 years ago! (EEK) I will post pics soon!

In Cancer world, I have been given the name of my new chemo drug.... Gemzar. It will be given along with my carboplatinum. Hmmm..... "Gem", "Platinum".....maybe I deserve some jewelry after all this crap! LOL. On a serious note, I hope to hell I don't have an allergic reaction to this one. The side effects sounds lovely...Nausea/Vomiting, Fever, Flu symptoms, Rash, Low Platelets...Hair loss w/in 7 to 10 days...gee can't wait! Ok, the hair loss is no biggie....just gonna have to learn to sunscreen my bald head! I will still have to get the Neulasta shot...hate that freaking thing! On a positive note, nobody wanted to stick me with needles yesterday and I gained a 1/2 lb! YAY!!

It's a beautiful day and it will be even more beautiful tonight as we pin our daughter!
So I end this on a happy note......
=)
Love
Bec

Life/Death/Friends

So, 2 postings ago I said this:
"ok, message here....don't keep things inside, tell someone, dont let the fear and sadness eat you up alone....share it, help each other in life. Be there for one another. it just might get someone else through a tough time in their life."Sadly, I learned a few days ago that a dear friend of mine committed suicide.....nobody saw that coming, nobody knew how much internal pain he must have been in...... Someone asked me if I am angry that he took his life, while I struggle to maintain mine...the answer is NO. I am heartbroken and sad that he thought that was the only thing left for him. He was a good man, person, friend and supportive thru my cancer. I will miss him forever and I cherish the friendship that we had.
Talk to each other people, share...someone does care!!
<3
Love
Bec

Happy Mother's Day!!

Hi!
Happy Mother's Day!!!  This year more than ever, I am so proud to be called MOM!
Thank you Rachel & Michael for making me a MOM!
...Oh yeah and thank you Walter for making me a Mom! LOL.
To my friends out there....Have a wonderful day!!
Enjoy the blessing of being a Mom!!
I love you
Bec

day by day

Well last weeks chemo didn't go well at all....3 reactions, progressively worse each time Taxol was administered...I thought I was gonna die....and I'm not being dramatic.....I felt like hell. I do however have to give major credit to Sandy - for being there with me and having to see how bad it got, she is amazing.And for giving me my Neulasta shot! Also my chemo nurses- talk about incredible people! They kept me calm, helped me and made sure I was ok. My favorite nurse Caroline had Sandy give her a saline shot to practice on her before having to give me the shot the next day. They listened!! They understood and they cared. I am now going to be on a 2 week chemo break, as my oncologist and I talked and she is replacing my Taxol w another agent. Not sure what it will be, but I will still be on my Carboplatinum chemo. I meet with doc on the 11th to go over new med. My daughter's pinning ceremony is on the 12th for Rad Tech and she graduates college on the 14th. I will be well enough to attend both ceremonies-since chemo is on hold for that week too. I wouldn't miss Rachel's graduation for anything! I'm so proud of her and all that she has accomplished in her 21 years!
Today was a better day, the bone pain from the Neulasta shot (for bone marrow) is subsiding, hurts most at night. Tonight I watched School House Rock with Michael and laughed...which was very much needed. I kmow my son worries about me and I know he is scared....I try to reassure him the best I can. I learned tonight that after the first failed surgery in November (the surgeon had to stop when he found it metasticized to lymph node)  ....as the surgeon walked away from my son, Michael flipped on his shuffle and Pink Floyds "On The Turning Away" came on....it hit my son hard, the song makes me cry as it does for him...and I realized that he sat there in that room surrounded by his dad,sister, aunt, ,uncle, friends, and yet he felt utterly alone with the song and his thoughts. kind of breaks my heart that this happened to him. But shows me how strong he tries to be....it took from November to May for him to tell me this. sigh.........ok, message here....don't keep things inside, tell someone, dont let the fear and sadness eat you up alone....share it, help each other in life. Be there for one another. it just might get someone else through a tough time in their life.
Life is too short to live it alone, live in fear, live for dying....we need to be able to live for living...take tehe gift of each new day and see where you can find a positive- even if its teensy weensy....grab a positive piece of your day and roll with it! a puppy pillow helps too!
with love

Bec

Where do you get your hair done?

LOL, now that I have this pixie hair going, I ran into a woman at a school play tonight who complimented me on my hair. She asked where I get it done, I told her its called a Chemo Cut!! LOL
She hadn't realized why my hair is this way, but she laughed along with me, =). Actually my hair looks kind of cute like this, BUT...once I lose it again-probably within the next 7 days, and once it grows back again, i will NEVER EVER cut it again. I'll be that awesome cool old lady with hair down to her butt. And you will look at me and smile and say what a cool old lady!! I ran into my oncologist during chemo yesterday and put in a request for a straight hair chemicalto be added to my chemo, she asked if I wanted the blonde added too, told her nah, i'll just box dye it you promise me straight hair on this go round!

F & F's



The Love of my brother Josh, who shave his head for me!



Me and Deb wearing scarves, playing guess the cancer chick wehen out in public

                                                         Last day at Radiation with Sandy

F & F’s….aka Family and Friends. I have got to say that my family amazes me! My kids, my husband, my siblings, my cousins and my nieces and nephews, aunts and uncles have all pulled together during this. After all if us facing the death of my Dad in June, there was a point where we all pulled together and then drifted for a moment or two in order to deal with our own personal grief over losing Dad. Finding out that I had cancer knocked everyone over and just didn’t seem fair at all. I think that was one of things that totally pissed me off, was that how could G-d do this to a family that just suffered a horrible loss, how could he ask them to go through this again? My younger nephew was scared I would die ;my nieces as well, and I reassure them that their Aunt Rif will not leave them and I will be here for them, might look a little funky and different but it will still be me. My darling Caroline lent me a tie dyed bandana that she made in Girl Scouts and I wear it proudly. My niece Rose wrote out all the lyrics to Katie Perry’s Firework song, which seems to have become my family song for me. All my little nieces’ and nephews came over and tried on my wigs, the afro the short black hair, the real wig that I could wear in out in public and course the neon PINK wig long haired wig  that I bought offline at a party store, its everyone’s favorite. Very hot and  looks great on!!My cousin’s and their children in Israel got to together and made me, the best hand designed designeds tee shirt, I wear  them all the time!

 I talk to all the kids on an open basis based on their ages and assure the ones who ask about death that I won’t die on then. I tell them that G-d isn’t ready for both their Zada (Yiddish for grandfather) and me to be there together yet!  It would cause too much havoc in Heaven! When I state Cancer a day of No Hair, and I go out without a scarf or hat, I find that adults are so weird about it!!! The turn and stare and …look away around trying to avoid eye contact and whisper to the friends. I’ve been asked personal questions by unexpected adults “: Did you lose your HAIR down there too?????? They were all dying to know.so let me put it this way….YUP…smooth as a baby down below!

 I  give credit to a woman at acme while was picking out Valentines Cards next me line, tuned to me in the sweetest voice and dead serious and said I hope God see you through this and pray that you make it. It was said with such sincerity that she made me cry and I want to hug her, but she floated away like a angel. The impact that she left on a total stranger was amazing. I hope to run into her again in the store and give her a huge hug. Sometimes the simplest words mean so much.

 Some of the adults approach me with question  you wouldn’t  normally ask a person, kind of like going up to a pregnant woman and touching her belly w/o permission asking about the weight of the baby, boy or girl ugly or pretty etc,,,. Kids on the other hand are more open in their reactions they, tend to take it all in and just smile these beautiful smiles at me. I got a hug book of notes from Joanne’s Kindergarten class, they blew me away with the love all for a lady they don’t now.

For all the friends that have stayed and are physically part of this ordeal, I thank you from the bottom heart…your help has gotten me thru some stuff times, with meals being made,contributions for groceries, rides, emails, cards and random emails.  Some friends have come and gone, not being able to Handle this or how I look and I find that so sad and depressing, I am still ME damnit, bald, skinny, ME. But I have learned that people can only handle so much and if this scares you too much, well guess what darling it scares me too and I can’t run away from it. So if you’re one of those people, give me  call, tell me you are afraid, let me explain it to you…My world is a bit lonely and I’d like you back as a friend. I want you to understand and I want you to be comfortable. But if that is not to be, then I wish you well.<3

Bec

MOHAWK!

Yeah BUZZ this!

22 Inches from scalp to bottom

Lightened and straightened!

Um, read the hats...F Cancer!



Does this shirt make me look bald??



What Cancer has taught me.....

What Cancer has taught me……

Cancer – the other bad “C” word

Cancer – The quickest way to learn who your real friends are

Cancer – the test of marriage and parenting that no book can guide you on

Cancer – a word that makes people turn away from you as if they may catch it if they look at you or touch you

Cancer – the loneliest word, the loneliest place, the loneliest existence

Cancer – the thief of mind, body, soul and hair

Cancer – the taker of appetite and strength

Cancer – the new reality of your life

Cancer – Who the hell decided that should be a zodiac sign??

Cancer – no hair, no eyebrows, scarves, wigs, no hair gel, no hair dryers or hairspray… people stare or look away so fast you’d think they’d get whiplash!

Cancer – No bad hair days

Cancer – NO HAIR DAYS!

Cancer – always cold, followed by hot flashes

Cancer – OH MY G-D I have cancer { whisper it }

Cancer – a test of friendship and faith

Cancer – quick showers, no shaving required

Cancer – a weight loss program that is too easy

Cancer – a drug for nausea, a drug for pain, a drug for aches, a drug for radiation burns, a drug for this, a drug for that…a Pharmacy’s Dream Patient

Cancer – an end to life as you knew it

Cancer – the beginning of a new and different life

                                                                                                                                                                                                        Rebecca Mayer

                                                                                                                                                                                                        February 20, 2011

My first try at this......

Hope you like the name of this blog, I went thru a few before deciding on this one. Ready for the list? We had: Kiwi Head (my husbands name for my little hair fuzz), CC & The Sunshine Head, Scalp Sprouts and Shiny Globe, just to name a few.
Ok, so can you tell that I like Jimi Hendrix, based on my blog title?
I've been writing since I was little and keep a journal when I need to get shit out of my head and I thought I would give a blog a try.
So here's the scoop, I was diagnosed with Stage 3 Lung Cancer on October 20, 2010. Three months prior to this, I buried my father who died from cancer. So my first reaction to the news of my cancer was WTF! Seriously??? Damn!
Talk about changing your world with a few words.......
So began the journey, the experience...the hell and the fears and the laughter that comes and goes...
Surgery to remove the tumor was scheduled for November 8th, but during the mediastanoscopy, my amazing surgeon found that the cancer had spread to the lymp nodes...so I was sewn up and sent home.
Radiation and chemo started a week later. My hair was 21 inches long, I've always hidden behind my hair, it was my thing.People know/knew me by either my long hair or my raspy sexy voice. I started losing my hair 3 weeks into chemo, thinning and coming out in huge clumps. This lead to the ultimate Buzz Cutting Ceremony! One 16 inch braid chopped off, followed by random cuts by my kids and husband.....my only rule was to leave the hair down the center of my head alone...that hair belonged to me.....having gone to college for Art in the 80's, I always wanted a Mohawk!! and damnit I was getting one!! The Mohawk stood about 6 inches off my head! It was awesome and then it was gone. The rest of my hair fell out over the next few weeks and let me tell you its freaking cold in PA in the winter! I don't know how men do the short hair thing.
Anyway, after going thru chemo and radiation hell, chemo ended 1/5/11, radiation ended 1/6/11, I lost my job of 9 years on 1/7/11 due to FMLA running out. Talk about a slap in the face. So here I sat, bald, sick and unemployed and waiting to heal enough for surgery, and find out that my insurance had maxxed out at my lifetime benefits!! It was another WTF moment! Everything was delayed... We eventually got this fixed, got on another insurance, was able to get my Pet Scan done and FINALLY headed into surgery on February 28th.
Surgery showed that all my lymph nodes were dead- YAY!! But the tumor was still active.....and now here we go again!
I have 4 months of chemo to do, same cocktail as before...Taxol & Carbo. Say goodbye to my peach fuzzy head...but that's ok, hair is minor...but damn I would kill for a curtain of hair to hide behind.
I have no problem going out in public as Baldylocks, but adults are so weird when they see a bald chick...kids are so cool about it...more on that later.
Anyway, I am writing this because it feels good to write, sometimes its better than face to face talking with people....This won't be a depressing blog, as my friends and family will tell you, I try to find a positive in each day and to laugh and joke about it all, lifes too short to always be serious!
Until the next post...
Xo
Chemo Chick