You Are Always In My Heart

I have been reading this book called “A Blade Itself” and there is a character in the book named Logen who encounters many battles.  When his fights are finished he whisper’s to himself, “I am still alive!”                                                                                                              That’s how I feel with my battles.

My last blog, I showed my frustration that I was not being treated for Her2+ because my symptoms were not consistent to this type.  However the blood test CA-27-29 was increasing each month which means my cancer was active and was it ever!

In April, Dr. D ordered a PET Scan.    When she gave us the report, it was not good news, and I may not want to read it.  Yea right, she knows me too well.  In general, the report stated that nearly every cervical vertebral body is involved particularly the C4 & C5 levels.   There is also activity in the iliac bones, ribs and scapula.  Activity of my cancer has increased in every cancerous bone in my body!

Off I went to radiation on my Cervical Spine.

The good news is there is no evidence in my Organs….(that includes my brain)

The aggression is serious and Her2+ treatment will finally begin!

In April, I started having an infusion every 3 weeks of Kadcyla.

How it works

Trastuzumab is a type of targeted cancer drug, (biological therapy), called monoclonal antibody. Emtansine is a cancer drug that becomes active once Kadcyla enters the cancer cell.

Some breast cancers have too much of a protein called human epidermal growth factor receptor 2, (HER2), on the surface of their cells. These are called HER2 positive cancers. HER2 makes the cells grow and divide. Trastuzumab attaches to the HER2 receptor. When this happens, it allows the emtansine to go into the cancer cell. Once inside the cell, emtansine becomes active and kills the cancer cell.

My first few treatments I was cautious and I waited for the side effects to slam my body.  It was surprisingly not bad and tolerable.

After more treatments, I can list the good, bad and ugly side effects.   I would say fatigue is the worse.   Coming in as a close second is bone pain, (go figure). My body will ache and some days I feel 80 years old.  Third would be acid reflux and heartburn.  This sneaks up on me in the middle of the night, and it can be ugly.  Fourth, would be nausea.  Nausea is another symptom that sneaks up on me for no apparent reason, (mostly in the morning).

My appetite is not the same anymore.  I have lost 12 pounds.  Yes, this is a Kadcyla side effect but, I blame it on the loss of some of my teeth and jaw surgery.   Thank you Xgeva.

On April 24th, I lost my dad.  I received so much love and life lessons from him.  I know he is at peace with the Lord.  I miss him every day.

I was traveling quite a bit to Connecticut where my parents lived.  My Mom wanted to move closer to me so the Condo would go up for sale. We applied for elderly housing in my town.

This was a stressful time for me starting a new treatment and worrying about my Mom.  She not only lost her husband, but was so busy with paperwork, packing and preparing the Condo to sell, it was overwhelming at times for her.  She is a strong woman at 88 years young!

Unfortunately by September, tests confirmed Kadcyla was not working.  My MRI showed tumors were increasing in my spine.  I was to begin radiation immediately on my Thoracic spine.

The radiologist explained this was very serious and I would need to complete radiation 100%.  No skipping treatments!!  I am thankful for my family and friends who drove me to radiation.  I also want to thank Dairy Queen for their delicious flurries that  I purchased pretty much every day after radiation.

Dr. D. made an appointment at Dana Farber to see Dr. P.  She wanted me to review with him all options, including clinical trials.  Were they giving up on me?  I was scared.

In September, my husband and I traveled to Dana Farber.  Dr. P. explained that I am a unique case.  I have her2 positive AND negative in my system.  He reviewed several treatments and recommended to try first Afinitor and Exemestane (Aromasin).

Afinitor is an mTOR, (mammalian target of rapamycin), inhibitor.  mTOR is a kinase,which is a type of protein in the body. Kinases help all cells — both healthy and cancer cells – get the energy they need. When kinases don’t act normally or are overactive, they help certain breast cancers grow. The  mTOR inhibitors work by interfering with the mTOR kinase and stopping cancer cells from getting the energy they need to grow.  Afinitor is a chemo drug that I take orally every day.

I am estrogen positive also. Taken orally every day is my estrogen killing drug Exemestane.   My ovaries no longer function like they used to.  You don’t realize how much you miss estrogen until it is gone.  The choices we make to stay alive.

On September 29th, I started my new treatment.

It was a nerve wracking time for me.  Radiation was exhausting me.  My throat was very sore and I lost my voice, (which some people enjoyed!)  It was painful to eat and to swallow my medication.  Work was demanding and I was worrying about my Mom.

I was so tired and hurting.  I fantasized getting on a plane to visit my good friends in Arizona.  I would beg them to take me to Sedona to feel the energy.  I visualized standing near the mountains reaching up to the sky and releasing all the poison and pain from my body.

In October, my Mom received an offer for her condo.  Yay!!  This was a quick sale and we had a limited amount of time to move her.  It was a very busy time moving her and also preparing for the State Election.  By this time, I was at the end of my rope, barely hanging on!

The lesson I learned during this busy time is, I need to retire.  I want to be able to spend time with my family and friends instead of plopping on my recliner every night exhausted.  It’s time to take care of myself.

My year wasn’t all bad.  I had a fabulous time vacationing in Maine.  We bought a new motorcycle.  I watched my grand kids play sports, the granddaughters in horse shows.  There were BB-q’s and nightly fires.  I had good times with my friends.

It is now January of 2019, time flies!  My medicine seems to be working.  I have lost a total of 23 pounds due to the medicine and having more surgery on my jaw.  I am not working as many hours and will officially retire in October.

The major side effect I do have is fatigue.  I was at the hockey rink throwing a ball to my grandson Michael and all of a sudden, I became so weak, ugh! I hate it, and it frustrates me that I can’t be as active with them!  One day I whined to my son Vinnie  and he said          “ Mom your still alive!”

Yes I am.

 

 

Give Me A Break

My last blog was 4 months ago.  Time flies and so much has happened since then.

Since my birthday, (which was wonderful), my cancer has been testing my body, mind and soul.

It also has been confusing the hell out of my Doctor.

Yes, the mother of my cancer,  who is well hidden in my body somewhere,  has let her poisonous children out to play hard and has caused havoc to my ribs, back and spine.

In October, I noticed more pain in my ribs.  My appointment in November, I expressed my concerns to Dr. D. and a PET scan was ordered.

My scan was a mixed result.  To summarize, my spine and bony pelvis, including my left iliac bone, is mostly the same or slightly improved since my last PET scan.  The exception is, there is progression on some of my ribs on both sides and my right iliac bone.  There is NO EVIDENCE of disease in any of my organs!

I was relieved that my organs were clear and so was Dr. D., however, she started questioning what kind of cancer do I really have.

Huh?!!

I was diagnosed Estrogen+ AND Her2+.  She reluctantly explained that Her2+ is an aggressive type of cancer that usually spreads to the organs quickly.  I wasn’t happy with this news and stated that maybe my holistic medicine is working, or my cannabis tincture OR prayer!  She still wasn’t convinced.

In the meantime, I noticed a small lump near my implant and had it removed, hoping to have it biopsied to determine, once again, what type of cancer I have.  Unfortunately it was scar tissue and could not be tested.

Since I showed progression in my ribs, Dr. D. decided to change up my treatment.  We MUST try to trick this dam poison because it is sneaky.

My new estrogen positive medicine was changed from an oral pill Letrazole to Faslodex, which is an injection administered monthly at the doctors office.

Faslodex is: (chemical name: fulvestrant), a type of hormonal therapy medicine used to treat postmenopausal women diagnosed with advanced-stage hormone-receptor-positive breast cancer in two situations: if the cancer failed to respond, or stopped responding to another hormonal therapy.

Breast cells need the hormone estrogen in order to grow. Faslodex works by blocking the effect of estrogen, slowing tumor cell growth.  Estrogen, I do miss you but unfortunately you’re helping to kill me.

I’m not a fan of Faslodex.

Since I have been on it, I have had bone pain, back pain, muscle pain and my arms twitch and spasm at night.

I’m always questioning, is it my medicine, or is it my cancer spreading?

I was very frustrated not knowing if I was Her2+ or Her2-. Was I on the right treatment?  Her2 positive and negative are treated differently.

I finally asked my doctor to schedule a second opinion at Dana Farber in Boston.  She was glad to do this and probably relieved to hear what they had to say about my predicament.

In January, my husband and I ventured into Boston to Dana Farber for a consultation.  What an impressive hospital!  I was very excited and hoping to finally get answers.

After going through the usual routine of weigh in and blood pressure, I was introduced to Dr. P.

Dr. P sat down with us and said after reviewing my files, I am unique (this I already knew!).  He then went on to explain that half my tests show I have Her2+ (at the low end of the scale), and the other tests show Her2-.  My husband asked the doctor a hypothetical question. Out of 100 cancer patients,  what percentage would be in the same situation as me?  He didn’t answer right away and my husband said less than 10%, which he replied yes, but much less.

The conclusion from my visit was to keep doing what Dr. D has recommended.  Have another PET scan in another month to see if there is progression and if so, have a biopsy done to get a better idea of my Her2 status.

I was also glad to hear how well respected Dr. D is at Dana Farber.  I am truly lucky and thankful to have her as my doctor.  I do have to mention that I love the staff at my hospital.  What a kind and compassionate group of people they are.  God bless them for all they do!

Since I have complained about my back hurting Dr. D. scheduled a MRI on my spine. Within an hour after my MRI, she called me and it wasn’t good news.

The poison had spread into my spine.  Most of the new activity is in my Thoracic area.

The thoracic spine refers to the upper- and middle-back. It joins the cervical spine and extends down about five inches past the bottom of the shoulder blades, where it connects with the lumbar spine.

Dr. D explained that I would need radiation immediately. I knew this was serious but was relieved that she was expediting a treatment fast. My MRI was on Thursday and the following day, I was at radiology with Dr. F and at my first radiation treatment.

My radiologist, Dr. F is a very kind and humorous man.  I am very comfortable with him.  He was my doctor when I had radiation on my hip and is familiar with my medical history and my concerns.  He knows that I adamantly do not want radiation damaging my organs.  If you have read my past blogs, I stopped radiation earlier on my hip because it was hitting my stomach.  Luckily quitting early on my radiation treatment did not affect my hip from healing and I am still walking well.

For my spine, he has scheduled 18 sessions of radiation which will be done 5 days a week (Monday-Friday).  As he explained to me, he will be using less radiation strength daily to protect my esophagus from getting sore and having me quit earlier.  I am looking forward to radiation relieving my pain.

Honestly, these past few months have been tough.  Pain sucks.  It sucks the energy right out of you.  I struggle getting up in the morning for work; come home exhausted and plop into my recliner.  My back pain turns to muscle spasms at night and I cannot sleep.  Thankfully my son found me some cannabis that helps me sleep.

I have cried and struggled with prayers.  I am unsociable and avoiding people and places due to my pain and also my paranoia of getting the flu! The struggle is real.  Fear is too.

I’m humble and grateful for my husband, family, friends and co-workers here for me. I am thankful for the cards, the instant messaging or texts you send to me.  Thank you to those who stop by my office to say hello. Our lunch dates.  The surprise packages sent to me with a beautiful gift inside.  Most importantly, thank you for the prayers. As the saying goes one kind word can change someone’s entire day.

Til next time.

“Let all that you do be done in love.”  1 Corinthians 16:14

 

Day By Day

It’s October and on the 18th I will be 60!!!

I am one of the few people wanting to celebrate this day. Screw my wrinkles and flabby arm wings ha!  I still dance like no one is watching and sing like I am Whitney Houston! (I’m not, just ask my husband).

I am stage IV cancer and thank God I am able to celebrate my 60th birthday.  I have my beautiful parents, husband, children and grandchildren and family far away and friends!!

Joyful, joyful, I am.  When I am alone after my husband goes to work, I sip my coffee and thank God for this life and how grateful I am.

October is also my 7 year anniversary of my mastectomy on my left breast.  During the “pinktober” month, I realize how forgotten Metavivors and ALL cancers are. Cancer sucks.

Ok, now that I got that out of my system, I want to continue about my jaw issues from my last blog in May.  As you know, I was suffering with mouth pain and unfortunately it did not get better.

If anyone has experienced pain in the mouth, you understand how I felt.

I was in PAIN.

When you have mouth pain, you cannot function or concentrate normally.  Talking, walking and even sleeping sucks!  If someone gave me a choice of breaking my leg with a baseball bat or mouth pain, swing away at my leg!

My Specialist, Dr. C. informed me of my ONJ issue and that he would need to grind down my jaw until live tissue could be found.  My only request was, please knock me out and they did.  Dr. C. ground down my jaw bone about ¼ inch on the left side and found life again in my jaw bone.

My face swelled up, and it hurt for a few days and is now still healing.  I lost my final 10 pounds and I do not recommend this kind of diet.  I can’t eat some foods anymore.  My jaw tires easily when chewing and it’s just too much work.  I am thankful I had Dr. C. and his staff, they were very compassionate and caring through all my procedures.

In September I went to see Dr. C and he was concerned with my jaw still and sent me off to Boston Medical to see another specialist .  Waiting at Boston Medical with my husband, I was imagining them removing my jaw, and all my teeth.  I was calm on the outside but freaking out in the inside!!

The first question Dr. R asked me is WHY would you take Xgeva?  Here we go again, every dentist has asked me the same question and I give them the same answer, to live longer and keep my holey bones healthy.

The description of Xgeva:

Xgeva (denosumab) is a monoclonal antibody. Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage.

Xgeva is used to prevent bone fractures and other skeletal conditions in people with tumors that have spread to the bone. It is not for use in people with multiple myeloma (bone marrow cancer).

Dr. R explained to me about the Xgeva shot.  He said that YES, the Xgeva shot may seem like it strengthens the bone in the cancerous area. Drugs like Xgeva work by slowing down the action of osteoclast (a cell that nibbles at & breaks down bone).  These bone cells normally dissolve small bits of bones to help remodel them and keep the bone strong. Sometimes Xgeva can cause the cells to become overactive when cancer spreads to the bones and can cause other problems.

Isn’t  that typical?  We all know what helps you in one area, harms you in another.  My side effect from Xgeva caused dental issues.  Having a bad tooth was an open invitation for an infection to my jaw due to the overactive cells and the blood flow was unable to reach my jaw and caused it to die.

Luckily for me Dr. R. at Boston Medical was happy with my jaw and how it is healing.  I do have bone exposed in my upper left side of my jaw. At this time, he is leaving it alone and he is going to check it every two months.

Oh my gosh, was I happy!  It was such good news for me!  Phew! I left Boston and headed out to celebrate with my husband!

If I knew then, what I know now, would I do Xgeva? Probably, but I would definitely go see my dentist and get ALL dental work done before I started it.  Oncologists need to be more aware of this issue and demand they get dental work done first, BEFORE starting Xgeva and have the dentist sign off, (some oncologists do this now), that it’s OK to start.  Xgeva stays in your system for a very long time. Skipping one or two shots is not enough to protect your mouth.

Knowledge is power.

I have been taking Ibrance for 22 months now.  I felt it was time to have a reality talk with my Oncologist, Dr. D. I have a good relationship with her and as I told her from the beginning, no bullshit, give it to me straight.

We discussed the stats of Ibrance and what will be next for me. There are still treatments for me that can prolong my life significantly. I told Dr. D. quality of life is more important to me than quantity.

I’ll be honest, I question every ache or pain I feel.  My ribs hurt for a few days.  It didn’t help that I lifted heavy books in my vault at work.  I’m stubborn and suck it up.  It’s amazing how rib pain can affect your day to day life.  What sucks with rib pain?   Coughing, sneezing, breathing, twisting your body while you drive and walking too fast hurts your ribs.  My wonderful husband tried to comfort me with his bear hug and it hurt!  That sucked!  I love his hugs, so he rearranged his arms differently because I need his comfort.

Now that I have rested, my rib pain is manageable.  As Dr. D told me “your body will let you know if you do too much” I need to stop being stubborn and listen to my body.

I am 60, I need to remember I am no spring chicken and aches and pains are not just about cancer, but age too!

Please consider donating to one or more of these organizations.

Metavivor.org

MBCproject.com

American Cancer Society

Breast Cancer Research Foundation

 

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LIFE IS HARD, LIFE IS GOOD

I was waiting for my blood test results at Oncology and I picked up a book called “Crazy Sexy Cancer”.

I knew right away she was young, and the advice was definitely for younger cancer victims but I did get a chuckle out of it and admired this woman, God bless her because cancer sucks!  And why the hell are so many young women getting this?

I just want to go around the country and slap people on the side of the head and say “Wake up people! There’s something wrong here!  There are too many younger women getting Stage IV breast cancer!”

Do I really think we can find a cure for cancer? I am skeptical.  I pray for our scientists every day because they have a tough job.  Some of our greedy government people have made it even harder for them by damaging our food, water and the air we breathe.

I was cancer free, a survivor, who did the walks, wore the pink and yelled YEA I’M A WARRIOR and then got the news it spread to other parts of my body.

Am I now a survivor?  When I was told I was cancer free in 2010 I felt like a survivor, what am I now?

I really did not know where I belonged.

Visiting my sister Kathy’s family in Minnesota, my Niece gave my Mom and I a pretty survivor ornament of a beautiful flower (no pink). My first thought was negative because I don’t feel like a survivor.   Kristy said we ARE survivors for what we have lived through past and present.  I needed those words.

Now I am fighting for my life.  It sucks.   I wish I could feel the way I did in 2010.

I no longer attend the Survivor night festivities at the local Cancer walk.  I don’t want to wear pink.   I used to belong to the cancer free club, not anymore.

After searching on the internet, I found others like me that had their cancer spread to other parts of their bodies.  The new club I belong to is called Metavivor.   There are 154,794 of us according to the most recent study by the National Cancer Institute.

Searching through Facebook, I found Closed Groups that understood me; Metastatic Breast Cancer CDK group; Thriving with Advanced Metastatic Breast Cancer, MBC Project, Metavivor Research and Support.

We are a mixed group of emotions that changes from day to day.  What we have in common is we want to LIVE and we need more research to do this! Finally Susan G. Komen in August of 2016 donated $375,000 towards MBC. I am thankful for this donation but personally I do not think it is enough from this large organization.

How much does our Government spend on MBC?

This is a paragraph from the Metavivor page:

In the United States, someone dies from breast cancer every 14 minutes. This number has not decreased significantly in nearly 40 years despite a huge movement to raise awareness and funds for breast cancer research. Just wearing, buying, or even walking for “pink” does not reduce deaths from breast cancer. Scientists know that research specifically focused on metastasis is crucial to significantly reduce the breast cancer mortality rate. Metastasis research is challenging for various reasons. However, the biggest obstacle is lack of funding: only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.

Think about that percentage that is not enough.  My cancer spread but I did everything right to fight the cancer, chemo, radiation, mastectomy, preventative medicines.  Don’t you think we should find out WHY it comes back?  Unfortunately, a percentage of those Pink Warriors will be in my shoes one day.

I am so thankful for the Metavivor groups I have found.  They understand me.  I read about hopes and dreams, and funny things that happen day to day.  My fellow Metavivor’s discuss their side effects, the disappointments.  We give encouragement when a medicine doesn’t work.  We celebrate when the results are NED (no evidence of disease).    We say our prayers for the ones who have left us too soon.

I have been on Xgeva for a year now.  Xgeva helps to strengthen and fill up my holey bones.  It also can give you dental problems which apparently I was getting.

At the end of April, 2017, It started with a toothache.  I went to see my regular Dentist who informed me I need to see a specialist on my tooth.  It was infected and it effin hurt!

I made an appointment to see the specialist, a big burly Italian with a heart of gold but huge hands! It was decided to pull the tooth. I cannot even explain the pain of those needles going into my infected gums!  The Assistant let me squeeze her arm and believe me I hurt her.  They pulled the tooth out.   I am not ashamed to admit that I cried like a baby.

Not even a week passed when the next tooth was in excruciating pain and I felt something in my gum area.  Again, I went to see my regular Dentist who again sent me to the Specialist.  He informed me that I would need to pull the other tooth out and that my jaw bone was exposed.  The needles went back into my gums (they gave me a squeeze ball this time!) and pulled the second tooth.  Then he proceeded to grind down my jaw bone and stitch it up.

It’s been over a month and my mouth is healing slowly and it hurts.  I am on Penicillin and a special mouthwash to prevent infection. I have been experimenting with my cannabis to ease the pain and thankfully it has helped.

Speaking about cannabis, I was overwhelmed by all the information on this subject.  I was thankful to find this website of Breast Cancer survivor,  Kaiulani Facciani, What I did & Do and Why.  For me it was Cannabis 101 which is what I needed.  If you are curious on this subject I encourage you to read her blog.

Cannabis is not a joke.  I personally resent the obnoxious posts on Facebook that show off their Medical Marijuana as a recreational fun time.  No wonder our society has a problem accepting it.

Eating has been a challenge.   I need to rinse out the area where my teeth were removed for food particles that may have found their way into the open space. I have to rest my jaw (which is not easy for me to do).

I have not had an Xgeva shot for two months now.  It worries me because of the great progress I was making.  It seems that the medicines to help keep you strong will also damage you somewhere else.

I will probably have to go to quarterly shots of Xgeva when my mouth finally heals.  Cancer sucks.

Even though on the outside I am looking well, and my attitude is good, I have my days when I am hanging by a thread and when you ask me “how are you?” and my answer is “hanging in there”

It’s one of those days.

I have been working on a new project.  Music means so much to me.  I have been compiling a list of all my favorite bands and picking out a favorite song from each of them.  This is not easy, think of trying to pick out your favorite song of the Beatles!  If I don’t limit it to one song per band it will be out of control.  There will be songs that remind me of people in my life.  It will be fun to go down memory lane and share songs on a CD as a keepsake of me.

Wish me luck!

Please consider donating to:

Metavivor.org or BCRFcure.org

Thank you!

 

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Drugs – The Good, the Bad & Ugly

I will admit when I was in my young and dumb years I sampled a few drugs and smoked my fair share of pot.  I could have easily gotten addicted to speed.  Luckily I grew out of it.

In 2010 when I found out about my breast cancer I was introduced to a whole new world of drugs.

Chemo drugs, anti-nauseous medicine (thank God!) and pain killers.  The medicine that would help fight the cancer would poison my body as well.  The list of side effects for Chemo drugs is long.

I had 4 cocktails of Adriamycin (AC).  When I was having my treatment and had to pee, the lovely red color in the toilet was a sign of war.  I drank a gallon of water through my treatment to rid my body of the nasty red poison.  My fight was beginning and there are casualties in war.

Losing my hair was the most traumatic side effect on AC. That’s a whole story by itself and someday I will tell it.  I took my anti-nausea medicine religiously and was lucky enough to not throw up.  My treatments were on Thursdays, by Saturday the pounding headache would arrive, and I would be very tired.  I would return to work on Monday.

After my AC treatment, I moved on to 4 treatments of Taxol.    It was a 5 hour drip (no red this time) and luckily my parents or Linda came and entertained me. I asked the nurse what it would be like on Taxol?  She said it’s different. Boy was she right.   Taxol is the BEAST.  I was bald with AC treatments but I am really bald with Taxol!  I had excruciating bone pain and on the weekend after treatment, I walked like I was 80 years old. I would use the pain killer Vicadin to ease the pain.

Taxol stayed in my body longer.  I had bone pain for months afterwards, and another pain that I can only describe as sharp electrical shocks up my legs and arms.  I had to fight the pain and keep moving and stay strong!

Chemo land was a bad time for me.   I had some emotional issues where I would break down and cry and couldn’t stop.  I was also going through forced menopause (chemo does this) It was an emotional roller coaster!

During Chemo land I took walks down my beautiful road.   I would talk to God, listen to my Christian music and pray for His help to keep me strong.

One night the dark place came after me.  I found myself spiraling into sadness, despair and crying uncontrollably. I was alone drowning in my own sorrow.  Bald and sick, I was tired of the fight.  Even when the room is filled with family and friends who love me, I still felt alone.  Suddenly I had this overwhelming feeling of love enter my body.  I felt such warmth and brightness.  I know that doesn’t make sense but it’s the only way I can describe it. I was overcome with love that embraced my body and soul.  I was overwhelmed and blessed to feel God’s love. I felt immediate peace and all the sadness left my heart.  There’s more to the story but too personal for me to share.  I know that I am not alone and He walks by my side every day through the good and bad I know He is there with me.

It is now 2017.  I’ve been on my medications for over a year and can share my experience.

First the good!

In late December 2016, I had a PET-CT Scan.  I brought Mike with me to hear the results. I’ve learned (the hard way) not be a hero and do it alone, plus he is my comfort and strength.  I’m not going to lie to you, I was scared and anxious.  This is my life for now on; have a test, get the results and pray for good news.  Luckily for me it was.  My Scan shows improvement in my bony disease.  No new lesions elsewhere. I am grateful there is more time to make memories.

My medication Ibrance has given me side effects; low white counts which means I have to wait for my counts to improve to start a new cycle.  I have an annoying cough and a constant nose drip!  The last week of my cycle I can get tired but that depends if I have been faithful with my vitamins.  My skin becomes dry and cracked on the tips of my fingers.  Oh! Let’s not forget that I can get gassy! (Maybe that isn’t a side effect ha!)

Along with Ibrance I must take Letrazole (they work together). My Letrazole side effects are bone pain, hot flashes and numbness in my fingers.  I also can get some wicked leg cramps.  Since estrogen is not my friend Letrazole is helping to shrink my ovaries into raisins! My slogan now is moisturize and lubricate!

I also have a shot once a month of Xgeva that helps keep my bones strong.  I’m usually tired my first week of getting this shot.  Xgeva can cause dental problems which I have. My teeth are more sensitive and I need to have a tooth pulled soon.  They will have to stop my shots when my tooth is pulled to prevent infections. I have talked to Dr. D of my concerns. I now will be doing the Xgeva shot every other month instead to ease my mouth pain.

My Doctor also has me taking Calcium and a D vitamin.

Let’s not forget my regimen of vitamins from my holistic Doctor Rebecca from Wondrous Roots.I truly believe combining conventional and holistic medicines together are keeping me strong and alive.

I belong to several Stage IV Facebook groups.  One complaint I read is how exhausted they are on their treatments.  I do know how they feel.  All of a sudden my body would melt into tiredness.  It doesn’t last long for me.  I believe my vitamins are helping to fight this.

Another drug I use is Cannibis (aka pot).  It’s not a recreational drug for me.  When my cancer came back, my pain was constant on my left hip area (iliac crest).  With Cannibis, I was able to sleep pain free.  I still use it occasionally before I go to sleep when my bone pain flares up.  Luckily it is legal in our state.

In January 2017, we started a Biggest Loser challenge at work.  This was very motivating to me and got me off my butt and working out at least 5 times a week. Yoga and the treadmill are my sanity right now.   I keep a diary of my workouts and write down how my body feels after each new routine I try.   Gone are the days of running or walking 4.3 miles an hour!  I have let that go.  My pace is much slower.  Instead of “Power Yoga” I am doing beginner tapes. I love working out and my body does too!

Am I in pain?  Absolutely, every day!  Moving my body has helped me with my pain especially the yoga; don’t think yoga is easy, it is not.

When we went to Arizona to see our good friends Cliff & Dot, I was able to hike up hills and walk for hours. So thankful!  My next goal is to do a few horseback riding lessons with my granddaughter Bella.

I want to spend as much time as possible with my husband, family and friends especially my grandkids.

Isn’t that what life is about?

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Furious November

 

First, Happy Anniversary to me.

A year ago in November, I was diagnosed with Stage IV cancer.  What a ride it has been.  Thank God I feel pretty good and still strong.  The medicine seems to be working.

Let’s go on to my tumultuous November.  Some of you do not know that I work full time as a Town Clerk in Massachusetts.

I mostly love my job.  I’m thankful for my co-workers, they are more than that, they are my friends and some I would say are my extended family.  We are a team which is wonderful.  It has not always been this way.

As we all know the Presidential Election was in November. For the first time Early Voting was introduced in Massachusetts and ran two weeks before the big one.  This is a great convenience for voters and can help relieve the long lines on Election Day.   For me it was added stress of the unknown.  How many will come in to vote, do I have enough workers?  Do I have enough space?

There is A LOT of preparation for elections, conferences, emails from the state, early voting ballots, absentee ballots, email ballots to out of country and military voters.  Paperwork, paperwork oh my!  This all happens BEFORE the BIG day on November 8th.

In the meantime we are still doing our day to day work, dog licenses, vitals and certification, meeting notices, answering the phone 100 times a day to the same questions “am I registered?” “Where do we vote”  “What day is the election?”  “What does Unenrolled mean?”

Wine was calling me every night and chocolate!

While early voting is taking place (close to 1400 voters came through) I still needed to prepare for the big one.  My assistant (Deb) and I had to test our voting machines, prepare voting lists, pack the ballots.  Affirmation notices, provisional ballots, street lists and of course the essentials coffee, tea and donuts!

In the state of Massachusetts, you can early vote however, your ballot does not go into a machine.   After you vote, you place your ballot in a sealed envelope which cannot be opened until the day of the official election.  What that means is the election workers have to check your name off on a voter list, unseal your envelope, and put it in the voter machine on the day of the election.

On the day of the Presidential Election it took 4 workers from 8:00 a.m. -6:00 p.m. to complete the early voting ballots and absentee ballots.  Phew!  Thank you legislatures!  I hope they grow a brain and realize processing a ballot through a machine during early voting would make more sense!!

Some people who early voted were concerned we would know how they voted, really?  Election workers are too busy to care how Ozzy and Harriet voted!  Rip the envelope open, check off the name and pile the ballots up to go through the machine.

Before the BIG day came, I was already stressed and exhausted.  I was eating and drinking all the wrong things and not sleeping very well.  My back and neck was reminding me every day by punishing me with constant pain.  One day I was so sad I cried to my husband that I hurt and was so tired.

When I was at work the following day, I was on the phone with Town Counsel who knew about my cancer.  I proceeded to tell her I was stressed  and  was eating and drinking wrong.

She said “now is not the time to poison your body with the wrong foods and drink. You need to help your body stay strong and healthy to get through this”.  I needed these words of wisdom. She was God’s Assistant to smarten me up!  My eating and drinking got better but sad to say my swearing was at an all- time high.

The BIG day finally arrived, machines were ready, workers were alert you could feel the apprehension and excitement in the air.  As we know, this was a controversial election and I was a bit worried.

It was a crazy busy day.  Yes my body was screaming at me but I was in high gear and could not slow down.

There were over 3500 voters that day excluding the early voter ballots we had to process.   Only ONE very irate man got into my face and my police officer had to assist me.   It saddened me the hate this man vented over a minor issue.  The day continued smoothly and I actually relaxed a bit and handed out cookies to the children in line with their parents.

Then it happens…..the fire alarm goes off!  WTF!!!  I look at the Police Officer and scream her name and she starts to evacuate the building.   I Call the Hot line at the State House to notify them of my predicament.  Fire trucks arrive, hundreds of voter’s are outside. The powers in the State House are barking at me that if it doesn’t get better, roll out the voter machines and let them vote in the parking lot!

Thank God, it was just the furnace!  The firemen turned it off and we were allowed to enter the building and it was back to business.  I so love my town!  They accepted the situation for what it was and waited patiently.

I took a deep breath, told myself to breathe, said a prayer to God to get me through this day and I promise that I will rest my weary bones.

After the hand counts were done, the counter’s and I left the building at midnight and I proceeded to the Town Hall and made it home at 1:00 a.m.    One very long day!

The following day you sort through all your paperwork.  Call more newspapers, put things away and take another deep breath that it is finally over.

Thursday was a holiday so I rested in bed (as I promised my body I would). I look at my Town Clerks Facebook page and realize that I have been picked for a random audit for my Precinct 1 Presidential   Election!  WTF!!!!!!!!!

I climb out of bed, haul ass to the Town Hall and sure enough I get picked for an audit.  In the State of Massachusetts it was voted by our legislators that after a Presidential Election 3% of the State would be randomly chosen for an audit.  Oh lucky me!

My body is screaming at me.

I am at the office, crying my eyes out, my poor Assistant, Deb got to see me breakdown.  I called my Town Manager freaking out that I can’t take much more and he might find me dead somewhere!  He is on his way to work and will talk to me when he arrives.

In the meantime, I ask Deb to process some overdue death certificates that my Funeral Director in town has been waiting for and to have him pick them up.  The Funeral Director arrives at the same time as the Town Manager, who hurries to my office to make sure I wasn’t dead!  I needed that moment to laugh and lighten up on the situation.

So In a week I did a Presidential Election, Special Town Meeting and a Presidential Audit.

My body let me know what this stressed caused.  I had my blood work done to start my Ibrance Monday, the day before the Presidential Election.  My white counts were not good and I had to wait a week to start my Chemo treatment.

During this stressful time, I did not do my yoga which I regret.  When I went to bed I DID listen to my Chakra Meditative music to sleep and I DID pray every morning.  I was still off balance.

A Family friend suggested I call her friend Deb and request a Reiki treatment.  I did this and I felt so much better!  She worked with me for over  1 ½ hours!  I needed this.

I left my treatment pain free, well balanced and wanting to learn more about Reiki.   I have been studying how to self-treat myself with Reiki.  I will explain this all in more detail in the future when I am more knowledgeable.

So what were the lessons I learned in furious November?

1.       Stress can fuck up your mind and body.

2.        Not doing my yoga and meditation caused more stress.

3.        Healthy fuel is not Alcohol and candy.

4.       I release stress by swearing.

5.       I will be retired before the next Presidential Election.

Oh, and one more,  though I was tired and in pain, I am grateful I could push my body and mind, stay focused and complete all the tasks that were demanded of me.

It’s a great feeling. So screw you cancer!

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Booby Be-Gone-Oct.10.2010

Six years ago today at 5:30 a.m. in the morning my former boyfriend and I left the hotel  across from Mass General Hospital for surgery to remove my left breast.  My parents were in the hotel room next to me, I didn’t wake them, I already knew they were up and praying for me.  We hugged and prayed together the night before.

I remember most of the tests I had before my surgery, especially the appointment with my anesthesiologist with my good friend Linda.  It was quite comical with the questions I had, especially when I asked if I had to cough up the breathing tube in my throat (hey I saw this on Greys Anatomy!) We almost started a riot in the waiting room because the wait was RIDICULOUS!!  Everyone that was waiting agreed.  I got in a little faster to remove  us troublemakers out of the waiting room.

Earlier in the month I had a MRI or ultrasound, I can’t recall the name! The sounds during the test was something out of a star wars movie, believe it or not I found the sound quite soothing, even though I was laying on my stomach with two holes to dangle my boobs.

Then there was the appointment the day before my surgery where they had to inject a radioactive substance, a dye, near the tumor to locate the position of the sentinel lymph node.  They numbed my left breast and then proceeded to stick a needle in my nipple!!! Holy crap!  That was surprising. Now I know what it must feel like to get a nipple ring!

During surgery, the surgeon uses a device that detects radioactivity to find the sentinel node or looks for lymph nodes that are stained with the dye. Once the sentinel lymph node is located, the surgeon makes a small incision  in the overlying skin and removes the node.  Of the 19 nodes removed during my surgery, less than one (.05) showed cancer activity.

Waiting for surgery, I was introduced to my “team” who would be with me before, during and after my surgery. My team was waiting for one of my doctors to sign off before they could prep me for surgery.    I remember sitting there on the bed looking at all the other patients around me, it was so surreal!

I sat up swung my legs to the floor and decided this wasn’t a good idea and was planning my escape.  Well, my team was observing me from a distance and casually came over and decided they didn’t need to wait for signatures and continued to prep me for surgery.  They explained my pain blocker which was administered into my back, I was indecisive to say yes to this procedure but in the end I agreed.

I remember heading into surgery and Dr. G (my surgeon to remove my breast) saying hello to me and then out went the lights.

Surgery lasted five hours I don’t remember what time it was when I woke up.  What I DO remember when I came around that something was in my crotch and it was very uncomfortable and I said to the nurse “what the hell is that?!”  He told me it was a catheter, ok well I let him know I didn’t need that!  He smiled and informed me that I was peeing that very moment.  I couldn’t wait for that to come out!

When I left recovery and was moved to a room, I was pretty doped up.  I noticed my son Vinnie came in and was sitting on the other side of the room with a stranger.  In my drug haze state I kept staring at him and wondering why he was on the other side of the room?  I must have looked pretty bad because he didn’t recognize me!  My Mom had to tell him this pale bald headed woman over on the other side of the room was his mother!

During the night my team (yes all of them) would arrive to see how I was doing.  In my haze I could feel their excitement to see me and their huge smiles.  I remember asking myself are they real?

I stayed at MGH for 48 hours.  Even though I received exceptional care, I just wanted to go home.  The nurses were impressed with my recovery and called me a rock star  (yay-sarcasm here).

My breast was gone an expander was inserted and would need to be filled every week to stretch my skin for my future implant.  Dr. W was my plastic surgeon who took over the surgery after my breast was removed.

When I arrived home, the pain blocker wore off and I was sore and uncomfortable.  I was thankful for all the love and care I received at home.  The prayers, cards, dinners and flowers from concerned family and friends humbled me.  LOVE makes recovery easier to handle.

These were confusing times.  It was all new to me and every appointment, test, etc., etc., was explained to me but you don’t understand what’s happening until you complete each part.

Chemo is explained beforehand, then you experience the side effects yourself….ahhhh now I get it!  Tests and more tests you have never heard of are done.  The surgeon explains the breast removal procedure.  The plastic surgeon has drawings on his white board (I’m a visual person) of your expander and implant procedure.

I listened to my doctors and honestly I cannot tell you how much I comprehended.  My brain was overloaded with so much information and I had chemo brain!  I was determined to fight but was overwhelmed with fear of the unknown. I prayed and got the answer Let’s do it!!

Thank Goodness I have a sense of humor! I can find something to laugh about even on bad days.

After my surgery I received the good news that I was cancer free! Yay!  I did it!  I beat cancer…woot woot!  Let’s celebrate to another 50 years of life.

After my surgery I decided to have my yearly mammograms at MGH. My friend Linda and I would celebrate afterwards with a couple Margaritas at our favorite restaurant The Border Café.  I would say to her “I’m cancer free for now!”  She didn’t like me saying that but maybe deep down I knew.

That was then, this is now.

Today, I will have happy and sad moments reminiscing about my booby be gone day and the weeks following it.

Now the battle is bigger and one I can’t win.

With God, my family (especially my eight beautiful grandchildren!) and friends by my side;

I will stay strong, pray more, worry less, laugh every day and live each day as if it was my last with NO drama.

Most importantly, I will have an AWEsome moment every day.

 

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