Well my Lazy Breast Cancer Ran a Marathon in 30days

As we know for almost 15mo this blog has been full of dying cancer, dropping markers, normalcy and paying down my medical debt. Pretty low key and I was just not a cool cancer kid. Normal cancer kid working full time, exercising 7x/week, running around, dancing partying and being me that usual sarcastic, funny, quick witted self. I felt I had cancer under its nose.

That changed 1 week ago out of left field. I had my 3mo CT Scans, which showed my cancer was slowly growing back in my lung space and lesions actually formed 3 small ones on my liver and my markers rose again. I had a plan come November 14 to start chemotherapy again and enroll myself in a TCell therapy trial based on using my body to help chemo work stronger. It was a good plan, made sense and physically I was ok.

See - plan, easy boring, kill cancer... usual 7yrs of my life.

Last Friday I woke up sick like I had the flu. Called my doctor and was told if it lasts 24hours go to the ER. This ibrance drug lowers our white cells which make us sick gals susceptible to viruses and infections. I was 100% convinced my two pukes and nausea was the flu.

The flu did not go away Saturday, so by the afternoon my on call doctor ordered me into the ER for fluids and anti-nausea. The symptoms lifted. I was awake, hydrated not sick, and went home. No headaches nothing, better, so I was sent home.

Then 12 hours pass. I wake up worse. Now I have a headache and I can't let go of my toilet. Me and the toilet got pretty close. I started to have cold sweats and was barely verbal. What is wrong I asked myself? Kyle had to get the ER, our families together and I thought this slow cancer now wants to kill me 5mo before I am married. I know then I thought crap I have to get into NYC and see a doctor my cancer is not being a nice friend to me anymore. I couldn't tell anyone that but get me to an ER now.

A second long ER visit happened. I was ordered for a Brain Scan. [Please note I have had 7 Brain MRIs since 25, 7 and 7yrs with cancer, so I never not did one. I get Brain MRIs annually and was planning on the 14th at chemo asking for one since the drugs weren't working. I was being proactive, my usual proactive self and figured eh I will get chemo and then a quick MRI when I am at my doctors no biggie].

The local ER found a tumor in a CT Machineon my left frontal lobe and immediately sent me to my savors at Cornell NYC. It took hours to wait. I could have died. My brain swelled bad. I could have lost speech, memories, words, thoughts and my life. I actually was at a risk of letting this stupid cancer get me with NO WARNING and it wasn't fair.

I got into Cornell early Monday AM and was already scheduled for a MRI and surgery that same day. Starting Monday the 14th I was at my home NY Presbryterian Cornell getting prepped to have my head popped open to kill cancer. MRI was done and then we discovered the 9mm buddy also grew 10 small buddies under 1mm a piece in my chrome dome. I now needed more radiation. Thanks big head for hiding cancer. I mean I have a nice smart head, but hiding cancer so not cool.

Moments were bleak. I have had a pretty east metastatic journey, no huge physical changes, quick small procedures, always have a response to therapy, but it pulled tricks this time. My big brain said no I wanna be smarter than dumb lung and bones and grew some hiding cells.. My big brain is not cool with me now. I am quite upset at how hungry it was for cancer.

Somehow my family, my friends, social media and I heard a voice (no joke I heard a deceased friend of mine from my cancer world saying do not give up you go) and you all know I am not super religious. I can't even imagine how it felt for them. I know I was scared but had to do anything the doctors said.

With the support of my family & my medical at Cornell (no joke somehow two doctors saved my life in less than 12hours), we had a plan. I was getting surgery with the top neurosurgeon in the world (see he is a famous man with a wikipedia page
 https://en.wikipedia.org/wiki/Theodore_H._Schwartz) At the same time my oncologist, Dr Vahdat was pulling her strings in NYC to kill these bad brain babies with the best colleagues she works with. She was already creating another Vahdat plan of sheer magic. Lining me up with (I tell you not) two doctors who probably know more than Stephen Hawking when it comes to brains, radiation and breast cancer. I understand nothing on what they do except they both worked to help create immunotherapy and vaccines to cure brain cancers etc... so smart cookies. So a magic plan was in place and somehow this was stuff I do, like coordinate and life was coordinating itself.

In the last week I went through fear, sadness, anger, shock and hope in moments. I thought brain cancer was death in days and I would not make it. I never thought that about myself. I am pretty fucking hopeful despite the cards I was dealt.

Somehow I had a giant tumor removed from my frontal lobe and proved that I can have brain surgery that removed a giant tumor from my head and bounced back with no verbal, physical, emotional or usual pre-frontal cortex dangers. I was slow from recovery, but needed no therapy to bounce back. I have a barely visible scar and the tumor vanished on my surgical follow up. Is this luck? Hope? God? Someone was there...

I had my surgical MRI and the big tumor is gone and on a follow up scan isn't there. So I was sent home with flying colors! Honor roll cancer patient this week! I got out of the hospital two days early. Look I love overachievement but my body was like nope I have a plan fuck brain tumor. So we are home.

I have a few appointments coming already I start radiation planning on Monday the 21st and get my head staples removed only 1 week post surgery. Then on the 29th of November I have chemo and t-cell shit to do. Look I am becoming a non boring cancer patient! I am a serious cancer patient now who gets to live on the Upper east side for 2016 Christmas Season. I guess I got that wish (kidding). I always saw those people with serious cancer plans like hmm breast cancer must be easy, because labs every month and scans every 3months is not bad.

Now I got a plan, lots of trips into NYC and will need people to help me and my family anyway so I can kick its ass again. I have chemotherapy, radiation and imunotherapies lined up in orders that haven't been laid out yet. I will know more when we see the doctors.

If you want some good reading, hang on this cancer patient is going to shock the heck out of you in a few months. I have become one of them. The serious ones with strange plans of killing cancer.

As lame as this is, I have become the female lance armstrong - one strong lung, screwed up hormones from a sexual cancer and now a big angry brain. You know Lance is still alive right? He almost died 20yrs ago at my age from the same shit with his testes. So see you guys in my 50s...because I got many years to go here. When I am cleared to run again and swim and hike and rock climb, you know my head will be there.

Remember also we have the go fund me. I am not working at all now and the family could need help to get me around anyway with food, support or monetary assistance. This is not going to be a blip for a bit.

https://www.gofundme.com/2cxdds6s

Well It is Time to REST, RELAX AND RECOVER

I am out of work again. I got my tumor markers back and they rose again. I am going to get scanned soon and then take it from there. In the meantime, I am going to enjoy my time off until I have to get scanned. I figured I would update you all who still read this.

I wish I had more words to say, but I do not.

Lungs...Seriously its been a year :-)

Where do I start? I never knew I had metastatic disease. I know that sounds pretty crazy as the metastasis was around my lung in my pleural space. I was running, training for a half marathon, and honestly focusing on work and figured my life with cancer was slowly going behind me. I had a work physical, like I do every year, and they found a strange noise on my EKG. EKG led to echocardiogram, which found fluid around my left lung base. This led to a CT scan of my chest, a Thoracentisis of my lung region and a biopsy confirming I had metastasis to the pleura of my left lung.


That was over 3years ago. I have been through many medications - Femara, Afinitor & Aromasin, a Clinical Trial, Xeloda and now Faslodex & Ibrance. It honestly did not think things were rough until a year ago I went in to fix my pleural effusion. The effusion never went away over 2yrs and I was hoping it was an easy procedure.


I woke up from that surgery with a pleur-x catheter in my left torso. It was upsetting and I felt like my whole life was falling apart. I had a hard time keeping my stuff together. In all honesty, I did not even think I would make it to this point. Having a giant tube in your side could do that to you. That tube put a giant hold on EVERYTHING. I ended up in the hospital due to the unbearable constipation the pain medication put me through. I thought I was going to die and it felt that way. It was a 3x/week visit from my visiting nurse who would drain the tube of the fluid. It was kind of neat to watch, but to save your stomachs I will hold off on a picture of it for you. I couldn't exercise and had to find new hobbies. When all my hobbies were physical, it was hard, but I learned that I love knitting, coloring, painting and spending time with my friends & family.


You know what? Some things made the situation much better.  I called the tube Oblina. I made fun of the tubey-wooby to make each day a bit better. I got out of the hospital and swore to NEVER take pain medication again. I was switched to Xeloda and thank goodness I had a wonderful response. The fluid was gone and my lung mets were slowly going away. My tube was able to be removed in 3months. My friends made things better. We went on a road trip to Disney, which helped me realize that despite the tube I could have fun and live the best life I could ever imagine. My fiancé proposed to me, which was amazing and still is.


I am off of Xeloda and on Faslodex & Ibrance. I still do not know if it is working, but it can fail just like all the other drugs. I try to keep my head up and keep moving. I do have those dark moments where I cannot find a light at the end of the tunnel. Some times I still cannot believe that I even had mets and it was in my lungs. So I just do what was (and still am) and still is making me happy by lifting weights, running, biking, knitting, coloring, painting, spending time with my friends & family  and hiking. It was what made me happy & despite lung mets it is what always will make me happy.

Bad and Good News

So I have been riding this good news that this oral chemotherapy, Xeloda, has been working about 10months.


Radiation worked really well and pretty much killed the rest of the cancer in my bones and also a rogue 2cm node in my chest wall. It also gave me 4more months on Xeloda, which I may not have gotten if I didn't opt for radiation.


Radiation left me with awesome side effects, mostly because my dumb butt kept taking my chemotherapy. I was apparently supposed to stop it. So I have had acid reflux and digestive issues, which are so awesome.... yep. It was well worth getting pain away and also zapping more small cancer lesions.


Life went on, markers dropped. Like I said good, but last month the markers began to creep up by 10pts and again this month by 10pts. Granted they are in the 60s and normal is 37. Last year my markers were in the upper 300s, had a 1/2 functioning left lung, and also had cancer pretty much in small spots everywhere.

Now I guess here is the kinda bad news, Xeloda is allowing cancer to grow, small, but its growing. I have two small spots on my left lung that grew from 2mm to 4mm and 5mm. That coupled with my markers rising, my doctor & myself felt it would be best to move onto a new drug.


It is not ideal, I really wanted no drama for once, but I guess I will not get that now or at least not yet. I am finishing out this chemo cycle tomorrow and start my two new drugs on Friday - Faslodex and Ibrance.


Ibrance and Faslodex are therapies that specifically target my dumb tumor. I have a genetic mutation called CCND1, which works with Ibrance. Faslodex is a shot (two large ones) that reduces the estrogen that is produced in my body. Here is some boring, but maybe helpful information on both drugs:

Faslodex (chemical name: fulvestrant) is approved by the U.S. Food and Drug Administration to treat postmenopausal women diagnosed with advanced (metastatic) hormone-receptor-positive breast cancer that has stopped responding to other hormonal therapy medicines, such as tamoxifen. Its two large shots in the butt. I go every two weeks and then monthly.


Faslodex is the only ERD available to treat breast cancer.: ERDs block the effects of estrogen in breast tissue by attaching to the estrogen receptors in breast cells, by reducing the number of estrogen receptors, and by changing the shape of the estrogen receptors so they don't work as well. It comes with all the side effects women get in menopause x10. I am used to this by now, so its no shock.

Ibrance - IBRANCE is an oral inhibitor of CDKs 4 and 6,1 which are key regulators of the cell cycle that trigger cellular progression.3,4 IBRANCE is indicated for the treatment of HR+, HER2- advanced or metastatic breast cancer in combination with letrozole as initial endocrine based therapy in postmenopausal women, or fulvestrant in women with disease progression following endocrine therapy.1 Its given in 125mg pills and if you get LOW WBC, they drop the dose to make sure your counts are OK.


Like every drug, you hear good and you hear bad. My doctor specializes in genetics and feels that people with my mutation get a good run on it. Especially since my cancer is now only in my lung region. Like I always ask, just keep me in your thoughts.


I also have been having a go fund me to help me pay for debt for my medical care. It has been six years of this and I am tired of playing the what credit card should I use so I can pay for my medical bills, treatments, and vitamins. I usually don't ask for help and try to do things on my own, but I figured I would give it a shot. It has been doing really well & I thank you all for that.


https://www.gofundme.com/2cxdds6s

More Radiation

So not looking forward to getting bone radiation close to 11mo after I finished my last round.

My doctor decided to send me to radiation to zap the cancer in my bones. The stuff has been there a year or so & is not going away like we would like. So I get to get zapped with radioactive waves in multiple spots for many days.

I
AM
NOT
LOOKING
FORWARD
TO
THIS
AT
ALL

I have been avoiding to much of anything since I learned and have been doing bare minimum. Yes, I work out 3x/week, but I usually for 6x. Yes, I showed up for work, but now I am out on medical leave again. This is the last place I expected to be after hearing that things were OK 3mo ago. Things are stable, but we are doing this to prevent potential progression and give me more time on Xeloda. That means that my time on xeloda is gonna probably not be as long as I hoped. Radiation may give me 3 or 6 mo on my current chemo, but it is no guarantee. this sucks.

Quick Update - Staying on Xeloda

Just an update:

CT Scans showed improvement in lungs and no more cancer in my liver. primary tumor shrunk significantly. Overall regression & stability. My markers keep dancing around in the 40-50 range. My doctor is going by the scans for now.

We also changed my Bone Mets Drug from Zometa to Xgeva. I am staying on Xeloda.

Xgeva is a simple infection given via needle. No more transfusions. Since my bone mets have only been stable while on the Zometa monthly, we decided to try a newer Bone Drug. Studies show they have the same result, but at this point I feel I also need a medication that treats the bone tumors better. I may get radiation on the spots if they are there in June at my next scan (as long as my markers don't fly high)

Drug type: 

Xgeva is a monoclonal antibody that works as a RANK ligand (RANKL) inhibitor.  This medication is classified as a "bone-modifying agent". (For more detail see "How denosumab works" section below).

What Xgeva is used for:

• Prevention of skeletal-related events (need for radiation, fracture due to cancer in the bone, surgery to the bone, or compression of the spinal cord) in patients with bone metastases from solid tumors. 
• Treatment of giant cell tumor of the bone.

SCANXITY

What is Scanxiety?? Well in summary I feel like this guy below:

Its the anxiety you feel when you know you are due for a PET/CT Scan. You feel it weeks before, days before, the day of and the day after. Its all consuming at times.

So that being said, that is how I will be feeling in the next 15 days. I can put on a good show. At work I may seem normal. With friends and family I put on a good "I am fine mask." Underneath it all is a girl screaming her head off and a complete anxious mess at home. I can find ways to cope, but underlying it all is this humming anxiety.

Horrible, absolutely horrible. Of course, I already have had anxiety since 9yr old... so lets layer that scanxiety on top of my already chemically imbalances head. Gonna be awesome...

That being have my first full scan on March 14 since September 29. I have gotten monthly chest X-rays up until January when my doctor & I decided to give my body a break from the radiation since my markers dropped drastically.

By the time I get my first real scan on Xeloda, I would be in my 6th month of Xeloda. The 6th month has been the primal time where my last two treatments failed me. My cancer "PTSD" acts up when I think about it. I am immensely worried that I may have progression and will get less and less time on each new drug.

Yes, this is also very possible, but it is sheer assumption, projection, and catastrophization. Lets look at the facts here: 1. my Tubey in my lung is gone, the fluid is so minimal now 2. I can run without wheezing for the first time in a a year. 3. I have 0 bone pain, which is not the norm. 4. My markers kept dropping then stabilized. My markers rose 2 points two weeks ago, but that could be stable for me.

Of course with any increase in markers or any minor ache, I do wonder is progression simmering and boiling its head to create more tumors in my young body. I wish I could say - "I am always hopeful."
Reality is, my hope comes in waves. I do truly feel grateful to be here still when many of my friends have now passed on. I am also hopeful that I would see a cure one day. I hope the more people know my story, the more people think or pray about me, and all that good karma will come and heal me.

This is the reality of my mind. A mind that was already predisposed to having fear and worry, now it is a reality I have to accept that worry and fear of cancer progression and even the D-word (death) could happen.

This is why I encourage people to share, read this story, and if you donate money think about where that money goes to. Choose to save lives. Enough of us people with cancer blog and write on Facebook these days that Education about Cancer and Prevention are no longer viable funding needs. We need a cure. I am not ready to accept that I will not make it past 5yrs with metastatic disease. I hope to prove the odds wrong.