Our Current Battle Plan: No Chemotherapy for Now

The current plan is determined (but will continue to morph as time goes by) :  No chemotherapy in my immediate future

We met with Dr. Stinnett (oncologist) and Dr. Miles (orthopedic oncology surgeon) on Tuesday.  Each appointment went very well.  They applauded my recovery and tell me that I’m doing very well after such a tough/invasive surgery.  They did up my dose of painkillers to see if I can’t do a little better with managing the ‘breakthrough pain’.  I’ve been advised that I may be on my lovely, decorated walker for about 6 weeks.  Good thing it looks so pretty – thanks to my adorable nieces. 

Stinnett discussed the reports on the PET scan and the bone biopsy.  He confirmed that the cancer in the bone is secondary breast cancer. It looks a little different than the primary breast cancer did…but the main things are the same.  Not exactly the news we wanted – given that this means stage 4 and incurable but this was diagnosis we were expecting.  The PET scan has indicated one small/measurable spot on my right lung and several smaller unmeasurable spots as well.  I also have one lymph node under my right arm that has cancer in it.  The assumption is that all of it is metastasized breast cancer and we’ll treat accordingly.

Speaking of treatment – we discussed that the main focus of treatment will be on the cancer in my femur/bone at this time as it is impacting my ‘quality of life’.  We have the metal rod in place to ensure no breaks (which were imminent otherwise).  They scraped the bone for the cancer they could.  Now I will be having radiation on the entire femur/hip to ensure that any cancer that may have been dislodged by the rod being inserted will be radiated.  As I already mentioned, for now - treatment for the lung and lymph node is ‘wait and see’.  The overall approach is to ensure quality of life which is why eliminating bone pain is our primary objective. 

On Wednesday – we met with Dr. Avizonis.  She is a character and I quite like her approach and quirky sense of humor.  She is no nonsense but also has a great bedside manner.  She will be doing 10 treatments – 1 treatment per business day for two weeks.  She stated that the radiation symptoms should be much less impactful than it was with breast cancer.  The burns should be less painful etc – mostly due to location and duration. 

Besides radiation treatment – I will be changing to a new daily ‘cancer pill’.  I had been taking Tamoxifen but with the assurance from some blood test that I am in menopause for sure (as well as its obvious failure at restricting the cancer from growing again)…we will be changing this drug and seeing if I can qualify for a clinical trial to also have a ‘booster’ test drug combined with it.  This new hormonal drug – is how we will manage the cancer in other places.  On Thursday, November  11^th – I will be going in for an IV drug which will limit the spread of the bone cancer. 

Ultimately, I feel good about the appointments and the plan.  I also feel hopeful (for the first time since the ER visit) with the prognosis – as Dr. Stinnett stated that it would be years at this point and not months before this disease ultimately wins.  He mentioned that he has two ladies he treats in a similar situation as mine and they are at 7 and 8 years of survivorship past the Stage 4/Metastasized cancer diagnosis.  I recognize that is not the norm – but love the sound of the possibility. (Norm is more likely 4-6 years or according to some internet research – chances are 22% for a 5 year survival rate) So with the disease spread being fairly ‘small’ throughout my body at this time – we won’t be doing chemotherapy but will hold it in our arsenal of potential tools down the road. 

I recognize that this conversation – is not comfortable or easy for anyone.  The purpose of this blog has been – from the beginning – to share this journey with my loved ones as well as with other cancer survivors.  It has my hope/fears/difficulties…and everything in between.  Please know – I have not given up hope and do plan to fight hard.  But – I will also be honest/truthful…and realistic.  There will be times when I will be angry, happy, in pain, sad, in denial or at peace.   I’ve experienced any and all of these emotions – within minutes of one another sometimes.     You will be privy to the ugly moments as well as the good moments.  It is therapeutic for me…and helps proactively answer the ubiquitous question – “How are you?”.   

I continue to be in such awe of the love and support I’ve been receiving over the past week.  It has humbled me in so many ways – and helped me stay strong during some of the difficult times.  I love you all.   Thank you so very much and from the bottom of my heart. 

Surgery a Success - Ready to finalize the battle planning

We won this round – and are ready to finish with the rest of the battle planning.

We had surgery on Tuesday of this week at St. Mark’s.  I absolutely adore my new orthopedic oncology surgeon – Jodie Miles.  She is young, smart and so personable.  I count myself very lucky to have found such great doctors in her and Jason Stinett (my oncologist).  They both answer questions on the weekend and go out of their way to be there for you when you need assistance.  The surgery on my femur went well.  They made three smallish incisions the outside of my left leg.  They put the rod into the femur through my hip and then strengthened the whole thing with screws in my knee and hip. 

I find the worst part of the surgery to be that time when you are still awake but away from your family.  You are on the gurney in the cold surgery room waiting for everything to come together and for the anesthesia to kick in.  This time – I did shed a few tears for the anxiety of it all.  Like I mentioned – Jodie Miles is so incredibly kind/empathetic…she isn’t afraid of the human side of her practice.   She was very comforting and sweet to me during this vulnerable time period.

The 3.5 hour surgery went well and I joined my family/loved ones in my hospital room.  Alan – stayed with me the entire day (except when he couldn’t ie – in the surgery room) and then spent the night as well.  My pain was very tough that first night – at around 0400…I was ‘coming out of my skin’ with it.  Luckily we were able to get ahead of the pain again…but it was amazing the amount of pain killers it was taking.  Later that same day, my father Rex was on his ‘tend Nannette’ shift.   My blood pressure started to drop as we now had too many narcotics in my system.  I loved that he was there to say something to the nurses to avoid any problems. 

After that eventful first day/night…the physical therapy started and I got to practice with the walker.  It will be great to have mine for support over the coming weeks.  I have big plans in place for decorating it into a thing of beauty….let me know if you want to help or have ideas on how to ‘supe up’ my ‘ride’.  I learned to walk, sit, use the restroom, navigate stairs and get in and out of various sized cars.  The pain is much more tolerable now that the surgery has taken place….it is more intermittent and just ‘different’ than the chronic pain from before. 

I've had a few people ask - so what does all this mean.  To be honest we are still finding out all the details BUT here is what we know so far. 

The bone biopsy is still being processed – but we found out enough to know that we are fighting a carcinoma and not a sarcoma.   That means the cancer in my leg is secondary bone cancer or metastatic breast cancer. This puts my breast cancer at stage 4 because it has reappeared in a new place and has impacted another ‘organ’.  In a nutshell – I will never be fully cured but there is hope of controlling the disease for as long as possible.  As soon as all the testing is back – this will be what our game plan involves – controlling the disease and preserving my quality of life while having it be as long as possible. 

We did also learn from the PET Scan results that the right lung, middle lobe has a very small amount of the cancer showing there.  The doctor called it miniscule and compared it to the size of a pencil eraser.  They also found one lymph node which also has signs of the metastasized cancer.  For now – I know that my left leg will be undergoing some radiation in an effort to reduce the tumors in my leg as well as strengthen the bone and help with pain management.  We anticipate more answers to come as we meet with both Dr. Miles and Dr.  Stinett next week (Tuesday) to discuss the rest of the findings from the tests and  go over the various treatment options available to us.  

To close – thank you so very much for your love and support this week.  I felt it…Alan felt it and my extended family felt it while they read your comments on Facebook.   While – I was unable to write back on every comment….it was a great source of comfort to me as we navigated the scarier aspects of the past several days.  I felt loved and support in ways I could never have imagined.  Personal notes, photos, funny quips and so many amazingly wonder items – such as various parts of the JetBlue family dressing up in pink in honor of surgery day.  I am just so touched, honored and humbled by the outpouring of love for me.…as well as for my family and friends.  I feel like with all of you in our corner – we can face and achieve absolutely anything. 

XOXO

A Girl With a Fight: Round Two

Sometimes - It only takes a few words to change your life forever.

In our case - These words were said late Friday night/early Saturday Morning (10/10 - 11). I had just returned home from a quick business trip to NYC. A young ER doctor looked at my CAT scan and then into our eyes and said - "I'm afraid it isn't good news - it appears you may have bone cancer." Alan and I just looked at each other in shock and a couple of tears escaped from my eyes.

Let me back up - Since the end of June of this year - I have been experiencing 'hip/leg' pain. It came on strong and suddenly but just as quickly went away. My assumption was my chronic lower back issues had flared. I spoke with my oncologist - and we did an MRI on my lower back with nothing abnormal appearing. Phew.  There is always a concern that cancer has come back and metastasized. We were incredibly relieved.

The months passed and the pain slowly became chronic and more and more painful. I went to an orthopedic sports doctor and did physical therapy - with no relief. I went to another doctor and was within one week of having another MRI - this time on my hip. But first - I had the NYC trip.

My intent was to walk as little as possible in NYC due to the pain in my hip/leg and my dreadful limp. Unfortunately - the yellow taxi stop at JFK had other ideas. There were no taxis available and the gypsy cabs would not take me to Long Island City as they prefer to catch fares to Manhattan. More money for them as they are almost guaranteed to get another fare/customer in the city. I ended up taking the Airtrain and Subway to my hotel. And - as is typical - there were complications on the trip which required more walking. Of course there are a couple funny stories involving a homeless man and a bag of rice...and another involving an elderly polish man who was trying to convince me to move with him to his homeland. If you want to hear those - I'm happy to share. They are both quite amusing tales in and of themselves.

By the end of the trip - my leg was UNHAPPY and my limp more pronounced. After the business meetings the next day - I went to the airport and was lucky enough to catch an earlier flight home. This welcome news allowed me to go to a family event after Alan picked me up from the SLC airport at 8pm. We left the party early (10pm) due to the pain I was having with my leg...and while walking out to the truck (with Alan carefully holding my arm)...the ground opened up under my good leg. A water main cover was loose due to an overgrown tree root and my leg fell down the hole clear up to my upper thigh. The result was a painful wrenching of my bad leg, torn nylons and a missing shoe. I was also covered with dirt.

I was in tears from the pain and we quickly made the decision to head immediately to the ER...and this is where we heard the words we weren't prepared for after the CAT scan. It appears to be bone cancer. As luck would have it - my oncologist had recently retired. I was without an oncologist to go to the next day. However, we have two very good friends - husband/wife - who have recently each gone through battles with cancer - and they were able to get us into their oncologist very quickly. Dr Stinett likewise got us over to an orthopedic oncologist surgeon - Dr Miles. They were both fantastic. The first course of action is to try and stabilize the pain (which is pretty severe). The ER had given me crutches and we bought an inexpensive wheel chair - as the second course of action is to avoid fracturing my leg. The edict - put no weight on your left leg. I guess we were pretty lucky that it didn't break with my fall. I also now have some pretty strong pain killers that I take around the clock. And the third course of action - involved a bone biopsy of my upper leg to verify this is bone cancer - as well as verify it is secondary bone cancer (breast cancer primary) and not primary bone cancer. The biopsy was painful. I won't lie but I was luckily quite sedated and have very little recollection of the procedure except when they woke me up while hammering in the needle into my bone. Right after that - I had a PET scan. This was for our fourth course of immediate action - determine if there is any other cancer in my body. It was a long test but fairly easy. This time there was no 'wild berry chalky flavored drink'. The drink was more like Crystal Light spiked with Lysol. :) Still - much preferred. No threats of vomiting involved.

So - for now - we wait for the results of the biopsy and PET scan to determine the future course(s) of action. We know that I will have surgery on Tuesday of this coming week to stabilize the weakened bone impacted by the cancer. If this is the secondary bone cancer - the surgery will entail putting a metal rod in my hip - down to my knee. The hospital stay will be two days, with therapy for at least two weeks. My hope is to return to work (at least from home) after that - although it will be with a walker or cane for a couple months.

Beyond that - we have yet to make plans until more test results are in - which I am hopeful will be Monday.  

While I never planned on continuing on with this blog - I will now reopen it to keep everyone informed.   Already - we are grateful to family and friends who have immediately rallied around us. Whatever the future holds - we know with the love of so many good people - we will be just fine.