We get by with a little help from our friends….

We get by with a little help from our friends….

Joe Cocker died today at the age of 70, having succumbed to Small Cell Lung Cancer. His rendition of “With a Little Help from my Friends” at Woodstock in 1969, is my all-time favorite. The passion he had while singing always amazed me, his moves always made me smile. The loss of his voice and talent is tremendous. The loss of his life to Cancer is horrible. The loss of his life to LUNG CANCER hits home with me, as I too have Lung Cancer. Mine is Non-Small Cell Adenocarcinoma Stage 3A.

What makes me even sadder is that Joe Cocker’s death seems to have become a way for people to publicly blame the patient for the disease, based on comments I am reading.  This just makes me so sad. Over the past 3 years, I have learned that this is nothing new in the Cancer world…..this is nothing new in the regular world….I have yet to attend a Cancer Patient meeting/event where I have not heard this from other patients. I have yet to hear another patient or person blame a different type of Cancer patient for their disease. Nobody blames a Breast Cancer patient, nobody blames a Stomach Cancer patient etc. I am not trying to sound mean; I am just sad, angry and fed up. Nobody provides support; there are “no paint the town a color” months for us.  Yet people feel inclined to point out to Lung Cancer patients that ‘I bet you smoked’….the sad thing is in the past 2 years, I have held the hands of 2 dying friends, one who had Small Cell Lung Cancer and never smoked and one who had Small Cell Lung Cancer and did smoke, yet also worked as a mechanic and was exposed to numerous carcinogens.  We talked about the misconceptions, the blame game, the overall sadness and despair felt by Lung Cancer patients, the lack of support, the need to become each other’s support, the moments when one or more of us felt like ending it before it ended us. I sit here typing this, as the sole survivor of these conversations…. I am in Remission/Chemopause, I need to hit 5 years to see if I survive.

Here are some facts from the American Lung Cancer Association:

http://www.lung.org/lung-disease/lung-cancer/resources/facts-figures/lung-cancer-fact-sheet.html

·        Lung cancer is the leading cancer killer in both men and women in the United States. In 1987, it surpassed breast cancer to become the leading cause of cancer deaths in women.

·        The lung cancer five-year survival rate (17.8%) is lower than many other leading cancer sites, such as the colon (65.4%), breast (90.5%) and prostate (99.6%).

·        The five-year survival rate for lung cancer is 54.0 percent for cases detected when the disease is still localized (within the lungs). However, only 15 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 4.0 percent.

·        Over half of people with lung cancer die within one year of being diagnosed.

Surprisingly, Pot Smokers are not getting Lung Cancer at the same rate as others.

 “Like tobacco smoke, marijuana smoke contains cancer-causing chemicals.  There are 33 cancer-causing chemicals contained in marijuana. Marijuana smoke also deposits tar into the lungs.” (American Lung Cancer Association)    

Let’s ponder that for a moment….ok, pondered it, guess Inappropriate Happiness isn't all bad.

Sigh…..ok I have said what I feel needed to be said, I speak from the heart, always have….. I hope people listen….

Today, December 22, 2014, Joe Cocker, a musical legend has been lost, his voiced silenced.  My sympathies to his family and millions of fans.  May he rest in Peace…..

Love Lifts Us Up

Who knows what tomorrow brings
In a world, few hearts survive
All I know is the way I feel
When it's real, I keep it alive

The road is long, there are mountains in our way
But we climb a step every day

Love lift us up where we belong
Where the eagles cry on a mountain high
Love lift us up where we belong
Far from the world we know, up where the clear winds blow

Some hang on to "used to be"
Live their lives, looking behind
All we have is here and now
All our life, out there to find

The road is long, there are mountains in our way,
But we climb them a step every day…….

Love

Rebecca 

4 years later……

4 years later……

On this day, 4 years ago, October 20, 2010, I was told… “You have Cancer”.  

That was 1,461 days ago, (in case you’re curious). It’s a phone call I will never forget, it’s a phone call that I want to forget….

….It was only 3 months and 22 days after my Dad died from Cancer ( June 28, 2010). 

It was heart wrenching to tell my children that I was now sick too. It was equally as hard to tell my Mom and siblings. And then to tell my friends……..

The life of a Cancer patient is not easy; don’t let anyone tell you that it is. Don’t think for a minute that it is all sunshine and rainbows…as most of us hide our real feelings and the real pictures/photos of how the treatments have/had affected us.

 Don’t judge others for their choices that they make, if you have not been in their position. (this is in regards to recent news reports about Cancer patients making life choices)

Living in Chemopause (also known as Remission- a word I don’t use)  is not an easy life, there is the constant worrying and stress of not knowing if/and/or when your Cancer will come back. Scanxiety is uncontrollable when testing is scheduled.  I am now 3 years and 2 months into Chemopause.  I cherish every day. I try to make things better for other Cancer patients through Rebecca’s Chemo Closet and through friendships I have made with other Cancer patients. I have found people, people have found me and we support each other, as there are no support groups for my Cancer. 

Blaming people for the type of Cancer they have is inexcusable. Genetics and environment play a huge part for many…..

At a Cancer event that I went to on Friday, one of the speakers, a psychiatrist whose practice is cancer patients, handed out a pamphlet in regards to her talk. It’s called “Resilience and Coping”. There is a lot of good info as to what Resilient people worry about; info about understanding that living through the Cancer experience can be one of the most stressful times in your life, allowing your feelings to come through to others, not forcing a positive attitude for the benefit of others. I just sat there nodding my head, like OMG, finally someone gets it!

I woke up this morning with Elton John’s song “I’m still standing” running through my head. J I love the video, I love these lyrics.    Help, it wont stop..LOL.

I hope you are all enjoying the leaves and trees and the color changes, it’s beautiful, make sure you take a minute or two to look around and see the beauty around you!

Love & hugs,

Rebecca

Chemopause 3- “The Musical”

Chemopause 3- “The Musical”

Chem-o-pause (noun/adjective)

 Source of word: Made up by Rebecca Mayer

Definition: 1. The pause in chemo that happens when you are in Remission

Pause-temporary inaction especially as caused by uncertainty

Hi All,

Today I celebrate Chemopause 3- “The Musical” (LOL, it just felt like it should say that)

Please feel free to make up a song and sing it to me. Hmmm, maybe I should make up a song too. I know I don’t write much in my blog, I do however write a great deal on scraps of paper, journals, notebooks, my hands…..well you get the point. Sometimes my thoughts are just too private to share with anyone.

We all feel like that at times.

But today I share this with you, I hope you read it.

As of today August 10, 2014, I have been in Chemopause (see above definition) for:

3 years
36 months old.
157 weeks old.
1,096 days old.
26,323 hours old.
1,579,403 minutes old.
94,764,206 seconds old.

As I stated in my last posting, no I did not become a Math Genius from all that freaking chemo and radiation! There is a great site I use for people’s birthdays, it’s a lot of fun/cool facts, check it out, plug your birthday in: http://www.paulsadowski.com/Birthday.asp

It’s been a decent year, a lot of things happening in my little world. Good things, sad things….changes galore.

J In HAPPY NEWS: 

Rachel  will be getting married in 1 year and 18 days!!!! She found the perfect wedding gown a few weeks ago, she is stunning in it!!!! It made me cry when she walked out!! This is such a happy thing for all of us!  I can’t wait to walk my baby girl walk down the aisle!

Michael graduated High School in June! He is leaving for college in 10 days! He’s going to Edinboro University in Edinboro, Pa (near Erie Pa, 7 ½ hours away, over 400 miles) He will be majoring in Forensic Science, in the HONORS Program!! He wants to do blood spatter and DNA analysis! All those years of horror movies and Dexter seem to have had an effect on him. LOL.

My grapevines have gone totally ballistic!! It’s time to make jelly this week! I can’t wait to do that! 

Sadly 2 of my beautiful Butterfly bushes didn’t make it through the hellish winter we had, but my hummingbirds are here in full force and the other 2 butterfly bushes are blooming, so I do have butterflies. My yard is like a Broomall version of Animal Planet or the Discovery Channel. I had an eagle here a week or so ago, hawks circling, turkey vultures, the possum is enjoying the grapes that fall on the ground, as are the birds and squirrels and other creatures that make it over or under my fence to get to the food. The hummingbirds still come right up to my face and chirp that amazes me every time!

A friend of mine recently said that she envisions me as Snow White in my yard. J That really made me smile! (now where did my 7 little friends go??)

Health wise I am doing ok. 

Still dealing with a bunch of long term side effects, knowing now that they will never go away. Trying to find some alternative ways to deal with certain long term issues.

I stopped the medicine I was taking for the neuropathy, as it was affecting my mental status and made me so depressed, that I was thinking things that were not normal. It’s bizarre the effects that medicine can have on people, and I think what’s even more bizarre is that doctors do not always inform patients of the serious things to look out for while on certain meds. My surgeon told me to throw the meds out, I did. The medicine made me feel suicidal.

I still take meds for bone and muscle pain when I need to. They help on those bad nights.

There needs to be more support for ALL Cancer patients to deal with the long term issues you face after treatment. It seems that some oncologist feel that a ‘treat and street” you approach is ok, it’s NOT! I could go on and on about what it’s like to be me, but we all have things to deal with in our lives.

I have a wonderful oncology social worker who is helping me to find my new voice in this new part of my life. One of the things that she has suggested is “Love yourself fiercely”….I like that, I’m trying….. She also had me read Rumi’s “The Guesthouse” recently, pretty powerful stuff. Here is the link if you want to read this poem. http://www.gratefulness.org/poetry/guest_house.htm

I am getting back to my artist self, I have missed creating!! I’m fusing glass and making pendants, assemblage art, re-working dolls that I find at flea markets (horror style). Yes, eventually I will post some pics of my art and I am working on getting an Etsy shop up for my glass work. My camera is a huge part of my world, I love shooting pics….someday I want an extreme zoom lens.

I miss the college days, having a studio to work in, creating nonstop, and exploring ways to express myself.  

Life is a journey! Don’t waste your journey! J

For my friends who are living with Cancer, caring for someone with Cancer or have lost a loved one to Cancer, I send you my love and understanding. I am here if you ever need me!

Now get outside and check out the Super Moon and start watching for the meteor shower!

 That’s where I will be later tonight.  

Make a wish if you see a shooting star!!

Peaceful wishes & Love

Rebecca

Chemopause 2

Chemopause 2

Chem-o-pause (noun/adjective)

 Source of word: Made up by Rebecca Mayer

Definition: 1. The pause in chemo that happens when you are in Remission

Pause-temporary inaction especially as caused by uncertainty

Hi All,

It’s been a long time since I updated my blog. I’ve had so much to say, but like a caterpillar, I’ve kind of cocooned my thoughts and myself from a lot of things and people. Sometimes I feel that the holding back on how I feel physically, or what I truly feel or think, helps to cocoon others in a safe place, away from the realities of what it’s like to be me. Don’t get me wrong, I will always be forthright and truthful; sometimes it’s just easier to tell people what they ‘want’ to hear. So with all that having been said, here goes J…

As of August 10, 2013, I have been in Chemopause (see above definition) for:

                                                                                    24 months

                                                                                    105 weeks

                                                                                    731 days

                                                                                    17,661 hours

                                                                                    1,059,677 minutes

                                                                                    63,580,625 seconds

LOL, in case you are wondering…no I did not become a Math Genius from all that freaking chemo! There is a great site I use for people’s birthdays, it’s a lot of fun/cool facts, check it out, plug your birthday in: http://www.paulsadowski.com/Birthday.asp

For now there is nobody jabbing needles into my chest, or shooting me up with bone marrow booster shots,drawing blood nonstop or making me so sick I can’t move off the couch. I am untouched for the most part, although I still go for a lot of tests and blood work etc. I’m still living on meds, but they are not making me sick; the meds help with the neuropathy (hands/feet-long term chemo side effects). Meds for pain, nerve damage, bone pain etc, some pretty heavy duty stuff, but I use it mainly at night, so I am not a daytime zombie. Muscle relaxers for when the damaged muscles ball up, and other meds to cut down anxiety and help me sleep- nights are the worst for me, my brain thinks too much. Pills, pills and more pills, I feel like Alice in Wonderland and I hear Grace Slick singing in my head. I still have my “inappropriately happy’ pills too, but I just hang on to them and smile when I see them in the fridge. J

My body is tired and I really wish I had my old body back….I want to go kick some ass and break a speed bag in the gym like I used to, maybe someday I will do that again.

I lost 2 more friends in the past few months. Ronny, an older man I met at Radiation died in March. We talked all the time. He also had Lung Cancer, but a different type, his produced tumors near his throat, eventually paralyzing his vocal cords and taking his voice, and he had tumors that spread through his chest. He was a veteran and just one of the nicest people I have met! I’m glad he was part of my life and I hold him in my heart and see him in the white butterflies that visit. (my grandmother told me that white butterflies are loved ones who are gone, that visit you)

I lost my friend Hank 2 weeks ago. He also had Lung Cancer, also a different form than mine. His journey was very rough, having suffered a heart attack and a stroke during a procedure. He bounced back pretty well for what he had gone through. He had trouble with chemo, but bounced back again. I jokingly referred to him as my friend the Jack in the Box. Treatment eventually started taking a toll on him; the nonstop chemo can be deadly when your body is so beat up. I have seen it happen before, I saw it happen again.

I did have the chance to go and sit and talk and hold hands with both of my friends before they died. It was comforting for all of us. It still makes me very sad. But I’m grateful for the friendships that we had and they will be with me in spirit as I continue on my journey.

I was due for my 4 month Pet Scan in May, but it didn’t happen. We live in a world where people have to fight every day for their rights, medical care, equality, marriage, family, jobs etc. We also live in a world where insurance companies are making life altering and life threatening decisions for us, without our consent. A world where a Cancer patient can’t get necessary testing done. My insurance company – Aetna- refused to pre-certify my Pet Scan, stating that I have been out of treatment for over 6 months and they deemed it “preventative and not needed”. (words to that effect) My oncologist who fought with them  once before and got approval for another test, pretty much threw her hands in the air this time and didn’t go to bat for me. She said insurance companies have changed the rules and I need to accept that. I am not happy about this at all, especially since my oncologist has been tracking the changes in my bilateral axillary lymph nodes in my armpit areas. How are you supposed to keep tracking them without the Pet Scan??  I was sent for a Cat Scan without dye (I’ve become allergic to the dye), it was a waste of time and money, it was like getting a very expensive Upper GI. And unfortunately will not show the lymph nodes without the dye. So I sit in limbo land once again. It’s very frustrating. If I had the money I would pay cash for the Pet Scan, I bet the hospital would love that!  Pet Scans are very expensive. ARRGGHH!

I hope that I continue to stay in Remission. So send some positive thoughts my way J

J In HAPPY NEWS:

My son, Michael past his Drivers Permit test last week and is doing great practicing with me in the car! He also got his Senior Portraits done for school and is looking at colleges. (sniff)

My daughter Rachel was on vacation last week with her boyfriend of almost 8 years. She came home on Saturday night with the most beautiful engagement ring!! My little girl is engaged and I couldn’t be happier for her!! They plan to get married in September of 2015.  (sniff again)
I love my kids!

I’ve got a yard full of grapes, tons this year! And butterflies and hummingbirds are everywhere in the yard! My special hummingbird that has been visiting me for the past few summers still comes right up to my face and chirps at me. It’s so freaking cool!

My final thoughts are for those who are living with Cancer, I know it’s hard, I know we sometimes put on the “happy’ face when we get a picture taken or see people and try to make everyone else feel ok. I have rarely let anyone see the ‘real’ pictures of Cancer that I have taken of myself, and I have taken a lot of those pictures. Just make sure that you take care of yourselves! And remember that you are loved.

Peaceful wishes & Love

Rebecca

I’m being Deported!

        Ok, now that I have your complete attention, LOL, I will explain. I have had fun telling people I am being ‘deported’ and watching their reactions. My pain management doctor (who is from India) almost threw his neck out when I said it, he turned his head so fast! He said “OMG, where are you really from and why/where are they deporting you to?” I said “They are sending me back to the land of Rebecca”. J ((( yes, a place as unique as me )))

            I am having my Groshong Power Port surgically removed next Monday, December 17, 2012. For those that don’t know what this is, it’s an implanted chest port that I have now had in me for the past 20 months. It was placed after I had to go back on chemo in April of 2011, as all my veins had gone to hell from chemo and were the size of uncooked angel hair pasta. (my veins are still crappy, but better than they were) The Power Port is used for taking blood, delivering meds, chemo etc. It needs to be flushed with saline very 6 weeks, so it doesn’t clog or clot. Mine has started to become difficult to access for blood. It is implanted in my left upper chest and the catheter runs over my collarbone, up my neck and into my jugular vein. Not a very comfy thing when I am trying to sleep or turn my head, as it tends to pull on my neck. I have threatened to use an xacto blade and remove it myself, which also freaks out the doctors, but I have finally gotten the official ok to have it removed professionally.

This is what it looks like:

From the outside, you can feel the 3 bumps that the nurse use to guide where they should jab that needle in your chest, you can also see the cath that snakes up my neck and feel the shape of the port beneath my skin. It’s like having an alien inside you, very weird, but very helpful when you need it. I also learned recently that when I am xrayed or scanned, I have a tracking number on the port that is visible on the tests. I have a card that I carry that identifies my numbers as well.

            I had my most recent Pet Scan a few weeks ago and this led to the decision to have the port removed. While the docs are continuing to watch some lymph nodes, I do not need chemo right now, which is a happy thing! So I remain on Chemopause and have chosen to be deported! I will be scanned again in 4 months, as this is the new normal for me.

            I look forward to starting the new year without my port.

Oh and one more thing (but shhh, don’t tell my surgeon) I’m making a tee shirt to wear on my surgery day that says: I’M BEING DEPORTED TODAY!  I hope to get a picture of my surgeon with me before he takes it out.

Wishing everyone a Happy Hanukkah, Merry Christmas and Great New Year!

With love

Rebecca

Taking October Back or 731 Days Later

I’m taking October back…again. J  A few of my friends are laughing at me right now, they know me well. I refuse to get any testing done this month, it will wait until November. This month belongs to me, it was taken away from me 731 days ago, and it won’t get taken from me again. October has always been a good special kind of month for me. It’s the month I got married 25 years ago, it’s my favorite holiday, Halloween (when you get to be someone other than yourself for a day),it’s my younger brother’s birthday month, it’s the time when all the leaves start turning beautiful colors; it’s a time of change.      

October 20, 2010, I heard the 3 words that nobody ever wants to hear, the 3 words that will change your life forever. “You have CANCER”.  Three horrible life altering words. Ugh.

It’s been two years today since I was diagnosed with Non-Small Cell Adenocarcinoma Lung Cancer Stage 3A. (by the way for anyone who is curious, Lung Cancer is the leading cause of death from Cancer and the type I have is the most prevalent form of cancer in Non smokers)

 I call this my Cancer Anniversary. I am in remission (knock wood) and have been out of chemo for 1 year as of August.  I have hair that is just now touching my shoulders! Woohoo!!!! My life still consists of test after test, a power port is still implanted in my chest for drawing blood and administering drugs, I want it out but have to wait, still have the neuropathy in my hands/feet (loss of feeling caused by chemo) and pain from damage caused by surgery and treatment. There is no magical cure for cancer, there is no ‘ta-da you are all better” especially for the people who are given heavy duty radiation and chemo. The treatments take a toll on your body, as the drugs don’t know how to distinguish between healthy cells and cancer cells, the drugs attack everything. Don’t get me wrong, I am grateful, just tired and wishing I felt more like the me I was 732 days ago. It’s hard to live with the threat hanging over your head on a daily basis, knowing that every 4 months you will be checked to see if your cancer has shown up somewhere else in your body. Talk about anxiety! I have always been very honest with how this has affected me and I hope you don’t mind reading the honest truth.

Cancer affects everybody. All types of cancer are equally horrible and should be equally supported and awareness should be raised. For those that I know who feel lost and not supported, just know that I love you and I get it. . It’s why my bumper sticker has a mutli colored ribbon on it and just plainly states ‘Cancer Sucks”. I’m so proud of my son Michael for wearing his “Cancer Sucks” tee shirt to school. (ok, how many mom’s say stuff like that? LOL) and I’m proud of him for standing up and telling people that there are a lot of cancer’s and that people need to be more compassionate towards others. I’m proud of my daughter Rachel for always thinking of how she can help others in this fight for their lives against cancer. I think my kids are amazing. I think their friends are amazing. I think my friends are amazing. J

So, the house is decorated for Halloween. My zombies are outside along with my giant spiders and tombstones. So far so good, no snow on my zombies this year! My grapes turned out great as you know, but my pumpkins suffered. I only got one teeny tiny pumpkin this year. Guess I’ll have to buy one to carve. Mikey and I have a tradition, after our Halloween pumpkin starts rotting, we bash it with baseball bats, it feels good, gets out some of the frustrations that life holds and its actually very funny to see!

“Firework” has been my song since this journey started, so I leave you with this line, “If you only knew what the future holds, after a hurricane, comes a rainbow”

Hoping all of us get a rainbow in our lives.

xoxo

Milestones and Chemopause 365 Days!!

Milestones and Chemopause 365 Days

               Today is August 10, 2012. It has been 365 days since my last dose of Chemo, so I say I still remain in Chemopause! I sit on my porch this summer, sweating my ass off, my new baby fine HAIR sticking to my the base of my neck and think how last summer, I sat out there in the same kind of heat, trying to warm up, wearing a sweatshirt, sweatpants, socks, wrapped in blankets, so cold from chemo, watching everyone else sweat. What a difference 365 days makes! I am stronger than I was this time last year, but not nearly as strong as I used to be…( I used to feel like Wonder Woman-but maybe that was all the coffee I used to drink). I am still in Remission (knock wood). I will have another Pet Scan in 2 months…..

I used to read those emails that said “stop and smell the roses etc” and think, “yeah ok, when I have time”. Believe me, having cancer forces you to stop and look at life, like you never have before and in a way that nobody else understands. (Unless you are also living through this hell and if you are, I send love your way). . I am eternally grateful to a strong, courageous, wonderful woman who also had cancer, she told me after I was diagnosed, that this is “the new normal”. She understood and encouraged me and I am forever grateful for her! Sadly she lost her fight last month. <3

 I have been looking back, not in a bad way as in like living in the past, but more in a reflective way- kind of a WTF and WOW mix. But believe me, there are parts that haunt me at night, hell it haunts me during the day too at times….but there are parts that make me smile and I’m thankful for all the people that helped me smile when I didn’t feel like it  last summer. Cards, emails, letters from friends mean so much. You feel so alone at times, but You ALL make it so much easier to feel less alone

               The testing is never ending, I pass one test, only to have to have another test done, I really am starting to hate doctors, but love them at the same time (am I conflicted or what). I’d like to get my chest port out, but the docs are saying “no, you might need it again”, I threaten to cut it out myself and they look at me like I have lost my mind. LOL, don’t worry, I’m not that crazy to do it myself. J (besides Walter and the kids have hidden the xacto blades) :P

The side effects of Chemo and Radiation are not discussed often enough with patients. Doctors really need to work on that. My Chemo brain is better than it was in the past. My neuropathy and nerve damage isn’t and it doesn’t go away, I have a pain management doctor now, who is working on helping me. I’ve already done intercostal injections into my ribs, helps for a few days, but not a cure for the damage caused by radiation and chemo. Trying different meds out, but my hands & legs are still numb.

               So I have been writing updates and then never putting them on my blog. Don’t really know why; guess it’s just one of those things. I have been writing in notebooks, scraps of paper and anywhere else I could find since I was diagnosed with cancer. Some of those thoughts and feelings were and still are so personal that I have never shared them, even with my family. So they will stay where they are, until someday.

               On a brighter note, my grapes have taken off this year and I figured out how to make jelly!! Woohoo!!! Kind of cool that it worked, but my family is wound the hell up on all the sugar in it. Thinking about trying to make wine next….look out! J

Have to share a quote from Where the Wild Things Are: “Inside all of us is Hope, Inside all of us is Fear, Inside all of us is Adventure, Inside all of us is A WILD THING”

….. So what are you waiting for??? Go have an adventure, go be a wild thing! J

xo

Rebecca