I Don’t Want To Join The Cane Gang!

When Dr. B. did a biopsy on my iliac crest bone, he also removed about 20% of my cancer in that area.

I am now hurting and limping badly.

I live and work in a small town where everyone knows your name (Cheers!).  Every day someone would ask me why I was limping, some I would tell my story to, others I would say I was getting old.  You get tired of explaining.  Or after telling them what’s going on they cheerfully say “you can beat this” and go on their merry way, not knowing how to react with the news.

I did the lean on walls walk, hung onto chairs and furniture.  Always got a cart at stores and tried my best to get a parking spot close to the entrance.  I now know how my Dad felt when he had to use a cane! We are such stubborn creatures!

I started using a hiking stick my brother gave me it didn’t look like a cane (so I told myself).  Then my Dad mailed me his first “walking stick” (still denial) that I used. I still would not use it around my grandkids.

In the meantime, Dr. D. suggested (again) that I have radiation done to help with my walking.  I did not want to do radiation because radiation can cause cancer ha! At this point I was ready to try it.  I couldn’t walk very well, I was not sleeping at night because my leg was throbbing.

I want you to know what radiotherapy does (this is from the cancer research page).

Radiotherapy is a treatment to relieve bone pain caused by cancer that has spread into the bone. The areas of cancer cells in the bone are called secondary bone cancer, bone metastasis, or bony secondaries. 

Radiotherapy is often used to control pain due to bone secondaries from prostate cancer, breast cancer, bowel cancer and lung cancer. It may be combined with other types of treatment, depending on the type of cancer you have.

Secondary bone cancer weakens the bones by damaging healthy bone cells. Radiotherapy can help to make bones stronger and less likely to break. It can also treat bones that have fractured. 

Radiotherapy for cancer that has spread to bones can also help to prevent new painful areas developing. Having this treatment may slow down the cancer and give you a better quality of life for a longer time. But it won’t cure your cancer.

On January 28th I started radiation treatments at Burbank Hospital.  I would go Monday-Friday for 16 treatments.  My leg was killing me by this time and I needed my “walking stick” or when my good friend Linda came to my appointments,  she insisted I use a wheelchair, if you know Linda you do not argue with her!

After my tenth treatment, I started feeling nauseous. Ugh!  I hate that feeling!  I was still trying to work full time and it was a struggle.  I didn’t have to work full time, I have plenty of sick time but I’m stubborn.

At treatment number 12, I quit radiation.  I told my radiologist that I was starting to feel nauseous and shitty, she explained to me it was radiating a piece of my stomach.  My stomach!!! I do not have cancer in my stomach and would prefer not to.

My last day I did not see my regular doctor (he was on vacation) instead I saw my original doctor from 2011. Reading my report, I could see and feel his concern and sadness.  I told him I was done with radiation and asked him if skipping the last 4 treatments would make a difference?  He said no, thank you for your honestly Dr. P!

After leaving Dr. P, I talked to a few of the nurses.  Nurses are awesome! They are not only compassionate, they are very knowledgeable.  They are my go to people.  I told them the concerns I had that my leg still wasn’t getting better.  It was explained to me that it doesn’t happen overnight and could take a few weeks.  They insisted I get a cane (a real one) to help my leg heal.

That was it, no celebrations just ginger ale and a comfortable couch!

Lying on the couch, I searched the internet for canes.  I found a cool site with different styles.  I ended up buying four.  Four?!  Yup, one for my car, one for Mike’s car, one for the motorcycle and one for work!  I had no reason to not use the cane, one was always available.

It was such a strange feeling using a cane, especially since I was healthy and athletic six months ago. It was hard seeing reactions from people, but you suck it up, smile and hobble along!

The reaction from my son Vinnie I will never forget.  Vinnie and his wife Kylie live near Boston, with two beautiful boys, my grandsons!.  I went out to visit, he met me at my car and I had my cane, I guess I forgot to tell him I had one.  He was a bit stunned, and wanted to know why?  When he would call me during the week, I would tell him I was doing well and then I show up at his house with a cane!?  We had a nice long talk that night and it was very humbling to see his love and concern for me.  I am very blessed.

It took almost a month for my leg to heal and to put away my canes hopefully for a long time.  I am now walking (slowly) a few miles and can ride my bicycle.  It still hurts if I overdue it, which I do a lot.  I’m the type of person who will walk one mile and think to myself hmmm…. that wasn’t bad let’s go a little farther and usually regret it later.

It’s who I am and I’m not going to change.  Self- pity is for wimps.

Bouncy Houses & Treatments

I have always been active, worked out 5 days a week, hiked, biked, kayaked. Exercise was my meditation, plus I felt healthy and strong.

I honestly cannot tell you how many times my hip hurt, knee ached.  I even had x-rays done on my knee.  I just wrote it off as age and side effects from chemo. I would take a few days off from working out, pop a few Advil then back to the gym!  I loved my 6 a.m. class, Tamara our instructor kicked our ass and I made great friends.

Then I got injured, thought it was my knee, x-rays again nothing.  I didn’t rest my injury.  My grandson Michael had a birthday party at a bouncy house facility, so much fun! And of course I had to try most of them and run around.  Then a week later I went to Stowe VT with My son Tony and Morgan with the grandkids and what was there?  Yup you guessed it more bouncy houses! They had one set up as a relay race and of course I had to race my granddaughter Bella!  There also was a fun water slide with A LOT of stairs.

My injury was now painful. I went to see an orthopedic doctor and he determined it wasn’t my knee but my hip area. Low and behold there is “something” there.  We need more tests and your oncologist’s name.  Thankfully they work in the same building and my tests were done quickly.

I am thankful for the compassion and concern my Orthopedic Doctor gave me.

Now on to Oncology:

In January 2016, my husband and I went to Oncology to what the hell are we going to do consultation. I just wanted to hug Dr. D!  She looked sad and baffled by my diagnosis. I’m sure she was hoping I would be the two percent who are cured!  She has been my doctor since 2010.   Usually my check ups in Oncology  with Dr. D. ended “looking good see you in six months!”

Dr. D. explained to us the cancer, where it has spread, options we have. It is not curable, but treatable. She is optimistic and upbeat with plans.

Treatment is a marathon not a sprint.  Slow and steady wins the race.

Since I am hormone-receptor-positive, I will be taking orally each day Letrezole an aromatase inhibitor to cut back or stop the bad enzyme.

Estrogen is not my friend.

I am also Her2positive (yes I am fighting two battles) I will be taking IBRANCE. This is oral chemotherapy that I take for 21 days and off for 7.  IBRANCE may lower my white blood cells.  During my seven day break, I have blood work done to check this.  If my white count is low, I am vulnerable to infections and could get very ill.

Thankfully IBRANCE was approved in 2014 it has been proven to extend my life.

Lastly, once a month I will have a shot of Xgeva. Xgeva is used to reduce bone complications and bone pain caused by advanced-stage breast cancer that has spread to the bone.

Of course there are side effects, too long of a list.

I will see my doctor monthly and pray my medicine will trick my cancer and slow it down.

I know there is more I can do to fight this, it’s time to research.

 

 

MY RESULTS

In December, 2015, I had a Bone Scan, CT Scan, PET Scan and also a biopsy on my left iliac crest bone.

I went to the doctors by myself the results were found in my

Bones :

Extensive lytic lesions throughout the thoracic and lumbar spine.The largest include T10, T12, L2, L3, L5, S1.  There are extensive mostly lytic lesions  throughout the left hemipelvis, some of which is visualized on the x-rays, and a few smaller ones in the right hemipelvis; bilateral sacrum. Many of the lytic lesions do not show activity on the bone scan. No adenopathy.  In the pelvis, there are asymmetrically enlarged, mildly enhancing tubular structures possibly neural involvement including posterior to the left psoas muscle especially image 51 sequence 5, possible sciatic nerve and its branches, but unchanged from 2010.

There was no cancer found in my organs (so far!).

The biopsy results were Her 2 positive and estrogen positive, my numbers were very similar to my biopsy results in 2010! Welcome to Stage IV cancer.

I left the Doctors office sat in my car. Time stood still, heard no sounds and stared out the window seeing nothing and feeling nothing.  I didn’t even realize that I was crying until my tears made my mascara run and my eyes burned.

Halfway home I thought of crashing in a tree (kidding).  Halfway home I think I had a panic attack an overwhelming fear came over me.  My car drove me to my daughter-in-law (Morgan), she and the kids were my comfort during chemo land and I needed that now.  I was quite the sight, and tried my best to hide my tears from my grandkids.  I babbled to Morgan, the kids made me smile, got my hugs took a deep breath and headed home.

It’s hard to tell loved ones your fate.  Hardest was telling my parents who have already lost two children.  Tougher was my husband Michael who I was only married to for 1 & ½ years. We are still newlyweds!  Dam I finally found the one I wanted to spend the rest of my life with hoping for another 30 years!

It sucked to tell my kids, BAD.  Down the list you go, relatives, friends, Co-workers, etc…etc….

I laid in bed that night fully awake (I have many sleepless nights) I prayed to God to give me strength for this journey.

Whatever happens I know that

I can do all things through Christ who strengthens me.    Philippians 4:13

Next an appointment with my oncologist, what will be the plan to help keep me alive?

The Eve Of My Test Results

November 29, 2015

Here I am the eve of my results of my bone scan test. Do I or don’t I have the big C word again?

I know it’s something, the look on the Doctors face, racing more tests, the whispers as you are getting x-rays the technicians are too kind.  The surreal feeling of being here before, but this time I know the doctor’s diagnosis, I feel it.

You have no control of your thoughts, Will it be in one spot?  Or everywhere, will there be treatments?  Or is there no help? Will I die soon? Who do you tell?  Who do you talk to about it, do you even say the C word?

I got lazy after five years, you never forget but you start living your life, start feeling ways you swore you never would again, start to stress on things, start to question yourself when two years ago, you would have said fuck that, I don’t need the stress or the worry, I’m alive, I’m a warrior move on, it’s all good.

So today I went to church and had Pastor Tom pray with me, so glad I have God in my life, knowing he will keep me strong through this.  I am a warrior and a fighter and I will NOT go down without a fight.  We all have strengths we never knew we had until we are in survivor mode.  I know I am.

I  know I can’t control my life, God does, my trust is in Him and I’m here for the ride, no matter the outcome, we will do it together.