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

Medicine and Mayhem

 The past month has been a month of ups and downs, zigs and zags, tests and more tests. I swear I feel like I’m on the worlds most messed up roller coaster and I’d really like it to just slow down or stop!

Three days ago, I called my surgeon and thanked him for doing my surgery; it’s been one year since surgery 2/28. I think I surprised him with that call J He wished me a happy anniversary! This guy is awesome!

Dealt with insurance issues for most of February, lost our insurance AGAIN……error on the part of Walter’s part time job….I swear the insurance world is hell! We lost our insurance last winter while I was in active treatment and were not notified at all. I apparently had maxxed out my lifetime benefits and none of my chemo or radiation was covered, needless to say that has left us in a humongous hole of debt. Was put on new plan for 2011, no problems, had surgery, restarted and completed chemo again and then boom apparently as of 12/31/11 no insurance again. This time I accidently found out our insurance had been dropped, I was looking for a doctor on the Aetna site and was locked out of our account. Clerical error that took a month to clear up. I swear I am cursed! But it’s all fixed now for the year 2012 and I get to continue my cancer roller coaster ride.

Had a horrible migraine in January, lost the color vision in my left eye for a few minutes, left eye was bulging. Saw my GP, saw an ophthalmologist, got a Cat Scan, Thanked G-d that there was no tumor found. (Apparently there is/was some funky sinus stuff going on). Need glasses- my vision is so messed up from chemo 20/80 vision, very dry eyes, discovered great eye drops for fake tears. (now I always look like I am crying LOL). Waiting to start physical therapy for muscle atrophy/muscle cell damage from chemo drugs.

Started getting horrible bone pain a few weeks ago…

Tomorrow I will head into Bryn Mawr Hospital for a bone scan to see if my cancer has metastasized in my bones. We are hoping that it hasn’t….I am terrified that it has….and so continues the roller coaster ride from hell.

               Sorry, this whole post is kind of a downer; I usually try not to share all that. The past month has been rough.

In life there are so many ups and downs, so many moments of good and bad, happy and sad. I’ve gotten to know so many people through chemo and radiation. There are the people you smile and wave to, the ones you chat with about random stuff, the ones you have deep conversations with and the ones you talk to even after you are out of treatment. Two weeks ago, a girl who was at chemo with me, passed away. We never really talked, just kind of a smile or nod across the room or at a cancer info meeting. My heart breaks for her family and for her and I pray she is at peace now.

               I went to a cancer support meeting last week and the Oncology Nurse Navigator had made these little ribbons with sayings on them. The one I randomly picked says: “Remember, we all stumble, every one of us. That’s why it’s a comfort to go hand in hand”

Xo

Rebecca

A New Year filled with hope, Expressions of Hope Calendar 2012!!!

Happy New Year!! The Christmas tree is down, the Menorah’s are put away, Chanukamas is officially over in our house. (Yes, we are a mixed up house)

It’s been a while since I updated my Blog. The ASCO/Cancer Net “Expressions of Hope Calendar” has been printed and the website has been updated, you can read my profile on there.  It’s so exciting!! I still can’t believe I am a calendar girl!!!!! Thank you to my amazing Oncology Social Worker –Beth Bell –she took this photo!

http://www.cancer.net/patient/Survivorship/Survivorship+Artwork/2012+Calendar+Artists?sectionTitle=January&sectionId=107994&vgnextrefresh=1

I enjoyed my Chemopause and “Rebecca Month”. It gave me time to reflect and make some decisions and just try and be myself.

 I thought that I could just get away with having my family wave our pets (2 dogs) over me and I could declare that I had my Pet Scan done, but apparently that’s not an acceptable scan in the cancer world (go figure LOL). So I finally gave in and went for my Pet Scan in mid-November. Talk about being on edge waiting for results. It’s amazing how you get used to being poked, prodded, and sick as a dog and then stress so much over a test that can change your life again. I didn’t tell my family or friends when I scheduled the scan, I didn’t want anyone stressing along with me and my husband and kids. I avoided posting about it too, for fear I would jinx myself. My Pet Scan came back good!! So I have no new cancer and am in Remission! That word “Remission” conjured up every tv show or lifetime movie I have ever seen that says “the patient is in remission” but I really didn’t understand what it means for me, as an individual….for me it means that my cancer is at bay right now. Unfortunately the Pet Scans don’t show microscopic issues, that is how my cancer spread to my lymph node in my chest and was only found during my mediastinoscopy, so I will be scanned every 4 to 6 months. It’s still like sitting on a time bomb and waiting for the next piece of bad news and I am trying to learn to live each day as a positive kind of day. (great piece of advice from my surgeon). The residual side effects of all the chemo & radiation are difficult to deal with; neuropathy, memory issues, bone & muscle pain, exhaustion (to name a few) and now waiting on thyroid test results….it’s a slow process healing from all the treatments and there is no Chemo 102 course that tells you what & how you will feel after treatment. I really wish there was a list somewhere…..but it does help to talk to other cancer patients.

“Rebecca’s Chemo Closet”   One of the things I did during treatment was what I called my “cancer purge”, I’ve lost so much weight and my clothes were falling off me, so I purged them, donating them to local charities. I was able to afford to pick up a few things in a smaller size and my daughter lent me some of her sweaters (she’s tiny).  I realized there are so many of us who are going through treatment related clothing size changes and along with the huge cost of treatment, doctor visits and meds, some cancer patients can’t afford new clothing. I am hoping to start “Rebecca’s Chemo Closet”, a free clothing exchange for cancer patients (men and women), I want to also include wigs, scarves, hats and blankets. I know we need it and I know it will help others! I'm hoping to start it in conjunction with my Oncology Social Worker -Beth Bell at the hospital where I am treated, Bryn Mawr Hospital
Stay tuned for more info!

xoxo

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