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

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