Hair Loss? What a Christmas Surprise!

I was told radiation would cause hair thinning. Instead I got the Christmas Coal of spending the last 8 days pulling clumps of hair off my head at least 3-4x daily. Now my thick curly hair has become thin,  wavy and wait for it......the best Halloween costume for next year

I'm quite irritated at the whole "you won't lose your hair for your wedding goal.." eh I kept some...thanks I will have some hairs blowing in the wind and will end the night with a good horror flick to go with my awesome hair

Thinning to a girl with a ton of hair does not equate to thinning to a medical team. I am assuming thinning in the medical world is tiny bald spots or possibly your whole head. I'm not mad at them I was told thinning .  Clearly my hair is THIN now. Thinning to me is like living a few strands here and there but a bit more than normal. Over the last week I have lost about 1/2 of my hair thickness. I have lost some nickel sized dots of hair on my left side and middle part region. Luckily I lost none on the right and have a deep right part, it may be fixable and no wig will be neeeded

Regardless of how fixable this is. I went through a full PTSD episode from losing hair. My mind went back to losing it in 2010. I kept picturing me bald, me not having hair at my wedding and the hair not growing back this time. I was also pissed that the hair fell out and now my thick 24inch hair cannot be donated. It was a worthless goal for 5yrs, yet another thing cancer has stolen from me.

Since my anxiety and PTSD is back...yay! I am going back to therapy. Mostly to deal with being retraumatized by having cancer, looking sick and also not looking like myself AT ALL. I look tired and sad...

Positive of being 2016-2017 crypt keeper : Maybe the radiation worked so well the cancer died...well good die cancer..Cancer stop taking things I like and just die so this hair loss better be worth your crappiness, Cancer.

I have no wigs and I refuse to go out with a bald head or cap... it's too cold for a head scarf....thanks cancer for giving me the bird and taking away my HAIR the only thing I was able to hold onto for hope in the last two months. Now it's ripping away and I have no idea when it will stop falling out. I hope today is the last of it. I would like to begin to plan how to fix my hair. I need something I can manage and control while dealing with an unmanageable disease.

That being said I  need recommendations for hair dressers who worked with alopecia or moderate hair thinning. This person also i hope won't be grossed out by surgery scars and The Crypt Keeper look I am developing..

If my hair stops jumping ship:
 1. Getting a hair cut to make my hair look thicker.
2. Getting tape-in extensions and possibly a topper for my bang/forehead to cover my surgery scar

I also want to plan for the worst:
I need a few recommended places in NJ or NYC to get a custom, real hair wig & good synthetics

Thanks guys

Radiation is Finished, but we still need help

I finished my last round of Stereotactic Radiation Therapy yesterday. 5 all done... they were long, sometimes scary, and now I am just tired. Tired from traveling to NYC so much in the last 5 weeks, tired from the waiting, and just the treatment in general.

Radiation follow-up is a visit with my doctor in 5 weeks and a possible follow-up brain MRI in 4 weeks. My radiation oncologist and medical oncologist want to make sure all my scans are timed up - to save us travel time and to get all the medical facts out there together as a team. Sounds good to me.

What happens now??

1. I continue on chemotherapy (yet another drug I take until it stops working and move onto another) - Carboplatin/Gemzar. These are IV drugs, I get them two weeks in a row with a break week.
2. I keep calling Intervention Radiology to get my passport placed in my left arm
3. We hope chemotherapy and radiation work, we can collect my T Cells to use in a possible trial
4. We continue chemotherapy, hope my brain stays stable and I get to have a good 5months of cancer dying before my wedding and hopefully after

Radiation is done BUT We still need help.
   I cannot be alone until 12/26/17 for longer than a few hours. Why? I had brain radiation, I could have brain issues and need help. Nothing medically scary has not happened since I was hospitalized. If you know me, I will push myself even if I am tired or injured. I am stubborn and I have a  hard time slowing down in general... so being on steroids makes that behavior worse. My doctors are fully aware of my history of doing crazy things (exercise, paint, drive without clearance, walk NYC for miles with no white blood cells, and you know drive and work out with a 5cm tumor in my brain. So here is why I get to be adult babysat. I also get fatigued easily. I can walk 2-3miles slowly daily, pick up stuff, fold laundry etc, but it exhausts me and I HATE THAT! I HATE ASKING FOR HELP! BUT I NEED HELP... damn and I am asking. So this is what our household still needs support or help for:

What could you do to help?
 1. Come visit.  Text or email me and please take me out of this damn house.  I have people coming pretty much everyday except: December 19 PM, 22 AM and December 23 AM. I do believe I have family coming those two nights. Regardless you can come visit and we can move plans around.
 2. Food Train. Please ask me or Kyle if you can bring food. We are actually low on help with that and I would love to cook and get back to me, but I still cannot cook dinners or lunch due to fatigue. I have no ride to the store and carrying groceries and cooking is too much for me to do. I get tired and have to recover from radiation and still am recovering from surgery.
3. Share the GoFundMe Page, we are so close to the end (minus my new medical bills). I appreciate all the sharing and donations
 
4. READ THIS TO EDUCATE YOURSELF AND SAVE ME SANITY
I am on steroids, so I am getting annoyed easily, so I am going to go all educator and social worker right now on WHAT IS METASTATIC BREAST CANCER. I am tired of answering the same questions about Cancer As I enter into my 7th year of having cancer, the constant either denial or lack of awareness I feel like either people do not listen or do not want to get the seriousness of what Kyle and I have had to deal with as a couple and what I deal with daily.

Here goes my rant: 
1. Society tells us that cancer patients go on treatment, it has a beginning and end, and then they stop. This is mostly true for some early stage cancers. I am no longer early stage and because of my age at diagnosis, I have been on some type of Cancer therapy going on 6yrs now. I have maybe had 1-2 weeks off from one type of treatment, but I HAVE BEEN ON CHEMOTHERAPY, TARGETED THERAPY, OR ANTI-HORMONAL THERAPY FOR BREAST CANCER FOR 6YRS. Since I finished early stage chemotherapy, I have been on many types of oral cancer drugs (targeted, anti-hormonal, injections, and chemotherapy). These are only easier, because you take them at home, you do not need to go to the IV room, and people assume chemotherapy is IV only and that things are fine because you are not strapped to a pole. ALL CANCER TREATMENTS HAVE SIDE EFFECTS AND SUCK.

2. Why do I NEVER HAVE AN END TO TREATMENT? My breast cancer moved from the breast (who knows when) and reappeared in my pleural lung cavity in 2013. It was small metastasis, and was considered Oligiometastatic. I called it 3D as a JOKE. There is no 3D breast cancer, just STAGE 4. What is stage 4 cancer?? It is when cancer moves beyond its original organ or site, it becomes Metastatic. Metastatic Cancers mean you will be terminal, it is chronic, there is no cure, and you will be on treatment for the rest of your life.

Metastatic Breast Cancer is what I have had since 2013. My cancer moved from my breast, I was in remission for almost 3yrs, and it laid itself in my pleural lung cavity. At that point, I could only hope for a cure, I would always be in cancer treatment, and I had to hope and pray that each cancer therapy I was given would fight the cancer long enough in my body to give me more time than the 33mo the government stats said I had. I beat the 33months with metastatic disease. I will be on treatment for the rest of my life.

My medical life forever:
I get labs before each round of treatment (going into 3.5yrs of this)
I get scans every 3-4 months unless my labs are poor (CT scans and Brain MRIs)
If the labs and scans show regression or stability, I stay on my medication.
If the cancer grows, I could get radiation and stay on my chemotherapy (if body organs are stable).
If the cancer grows in my organs and I cannot use radiation, I change treatments.
THIS REPEATS
THIS REPEATS UNTIL I RUN OUT OF THERAPIES and trials.
Then MY BODY STOPS RESPONDING WELL TO CARE AND I GO ON HOSPICE. 

THIS IS REAL..
I HAVE WATCHED 5 FRIENDS DIE THIS LAST YEAR, TWO ARE ON HOSPICE, AND MANY KEEP PROGRESSING ON TREATMENT. I WATCHED MY AUNT DIE FROM CANCER.... THIS IS WHAT HAPPENS

IT HAPPENS BECAUSE RESEARCH IS STILL UNDERFUNDED. 

There is no end to my treatment. We hope Carboplatin/Gemzar works as well as it did for my Aunt Kerry in 2011. We pray I do not need radiation to my brain or bones again anytime soon. I just pray for a break here and there so I can do what I want beyond doctors. I have been in and out of chemos, surgeries, radiation, strange biopsies scans, etc for 7yrs... I am tired. I want some good news. That's all i ask. 

to help funding for Metastatic Cancer Research please go to www.metavivor.org

thanks for listening to my steroidal rant. I am going to eat my soggy cereal i forgot about when typing this post

Almost done with the biggest Mountain of this...

As you all know last week I received my first week of round 1 of chemotherapy - Carboplatin & Gemzar. It was a pretty easy chemo. 1st day after I was fine probably because of the IV Steroids I had to get. Thursday I was tired and wanted to nap. Friday felt like I had a mild flu - cold, body aches, and slow to move. Saturday, I was all better, but still needed more rest than usual. Nothing too bad and nothing I cannot tolerate with balancing rest, walking, and living my life.

Last Friday, I got the solid plan for my Steriotatic Radiosurgery Treatments. 5 sessions of SBRT  (just means more than 1 SRS using the same machine) to the incision line of my surgery site and they are using SRS treatments using something called TruBeam SRS (not cyberknife like I was assuming) on the small spots, a little each day.

In addition to having 5 radiation sessions tacked between chemotherapy, I had to be put on 8mg of steroids daily, but they made sure they worked to help combat some of the anxiety and hyperactivity that occurs from me and Dexamethasone. The plan using the steroids with a calming agent has kinda helped, I am sleeping and not shaking. Steroids are also good so my brain doesn't swell and I don't die or something bad from radiation. So I am ok being on these steroids. I am just loosing weight on Steroids and trying to maintain weight on a known weight gainer is odd. I am also getting a lot done, talking too much, and seriously enjoying Christmas shopping too much. Welcome back hypomania, you are not fun. I am also very thirsty.... which could be the medications I get orally, the radiation to my brain or chemotherapy.

I had two radiation sessions. The first went quick and easy and took 40min max...easy right? The second was hard, we were doing more spots than my first session. I was able to get through 95% of the session and eventually my head couldn't remain still for the radiation anymore, I was in the head cage for 1.5hrs at that point. Doctor came in and explained it would be worse to force me for prescion  of the radiation. So we are taking that extra 5% I couldn't sustain to Friday. Apparently people tend to miss more than 5% more often at each session and they tack them onto other days. Its no big deal and better to be still as possible so radiation can be EXACT.

So 3 more radiation sessions left and no chemotherapy next week.

WHAT TO COME??
I am still waiting on an appointment to get a Passport (port under the top of my arm in my armpit region) done. Why a port? I never got one ever and had so many chemotherapies and infusions etc, that my right arm (we cannot use the left because it has lymphedema) has very little good veins to use anymore to place a line for treatment. Not good... so waiting on that.

We sent off my brain tumor to prescion medicine to get the genes checked out. We will continue two weeks on with both Carboplatin/Gemzar as long as it kicks my cancer's butt.  I am going to be seriously immunosuppressed on these medications. If you are sick or have been near things that can spread germs, just be conscious that I do not want to be sick and cannot get sick. I know people wanna visit, but coming to see me sick is not what I need now. I also cannot be in large crowds and I get tired easy... so there goes dragging me to some concerts and bars for a bit. I never usually go to those things, but just saying. I am kinda not gonna run around crazy and end up sick or hurt (been there do not wanna go there again).

Still in the wings with the trial. Ultimately goal is to have chemo get my markers dropping and start talking to Sloan about enrolling me in the trial. I will need a stable brain MRI 4mo post radiation and be off of chemotherapy for 2 weeks. So the timing is odd, I am leaving that up to my oncologist and will continue to talk over with her.

Kyle is back at work. I am home being a slave to medical doctors and running around on steroids cleaning, decorating and begging people to take me out of my house!!! please!!! steal me!!! I cannot drive until the 26th!!! please soon!!!

If you feel inclined to help us financially there are a few ways:

1. share my GoFundMe 
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do

Summary of My New Neurosurgeon/Radio-Surgeon and my first IV Chemo in 6yrs

Neurosurgical Consult
  (all the doctors, treatments and drugs are hyperlinked)
On Monday 12/5/16, we had an appointment with Dr Ramakrishna . Ultimately the goal to line me up with him is that 1. He will be following me bimonthly with MRIs to track my brain and 2. He specializes in Radio-Neuoseurgery and works with my new Radiation Oncologist team on the SRS Radiation like the type of SRS (there are many) I will get. He agreed that 5 cyber knife sessions to my scar line every other day and also that the mm spots will be zapped that same day 2 spots each session with True Beam SRS Radiation.

Side Effects: Fatigue
                      Small hair loss from the spots that get radiation, but its thinning & will grow back (I already was planning on cutting my hair into a bob before the wedding, but now I get some extensions to fill it in)
                     Possible need for steroids (trying to avoid them) if brain begins to get swollen from radiation.

Easy appointment, doctor sounds good in person and online.

Chemotherapy
On Tuesday I started chemotherapy, Gemzar and Carboplatin. First IV chemo in years, I was nervous and scared to death and was afraid of more steroids after how they make me so manic. So we meet my APN review side effects & with my MD and pharmacist approval tried to go without the steroids as a pre-med.
   Pre Meds: Aloxi, Emend, Pepcid AC and we did not use the Steroids, but had to (see below)... well enjoy a chatty Cathy again and some hypomania and ADHD after chemo days.
   Chemotherapy: Gemzar over 30min and Carboplatin over 1hour (1x every week for 2 weeks with one week off)
  Side Effects: Flu-Like Symptoms (muscle aches, possible fever, tiredness)  the night after chemotherapy
                        Mild-Nausea
                        Indigestion
                        Diaherra
                        Risk of lowered White and Red Blood Cells & Platelets

Started the pre-meds and got an allergic reaction to the Emend (as it can do that). Throat closed up, wheezing and redness. We had to put the steroids in. So fear and anxiety came back, I felt like crap. After that chemo went easy and no problems.

Today is the next day, I feel tired that's all no nausea a little stomach ache. Last night I had achy muscles like the flu, which I was told would happen.

We were told yesterday that SRS Radiation starts on 12/5 at 5pm. All radiations may be that late, but we are waiting on the next four appointments. My next chemo is 12/6. Kyle is my transport to those. We are working with out family regard rides to four radiations & also anyone to come spend a day with me on 12/10 and 12/17, because Kyle needs to go to work and I am not cleared to be alone all day yet. I asked some family first, but then may need a friend those days. 

Kyle goes back to work on the 7th. Mostly will need people to come for company on: 12/8, 12/10, 12/13, 12/15, 12/17, and 12/19 for now. We are waiting on my neurosurgeon to tell me when I can take the subway for doctors. We are assuming by 12/19 and if I can be alone before 12/19.

If you feel inclined to help us financially there are a few ways:

1. share my GoFundMe 
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do
3. share my Poshmark site with friends on Facebook or if you are on Poshmark - selling the used clothes helps
4. I am not doing Younique for now, but will be back. So doing parties and sharing my home business would help. I am planning on being back selling by mid January. For now my team is handling any holiday sales so I can get better.

Thanks all!

Brief Update Regarding My Page, Care and Treatment

First, I updated my treatment page. It may be helpful to review if you want to share what I am on and each chemotherapy drug and supplement and surgery and radiation treatment have been hyperlinked to what it is and explained why I am on it.

Next is that we are moving towards a solid plan. 

Turns out having Brain Metastasis is better than the tumor that has been living in my lung lining for 3.5yrs. The Brain Tumor I had was larger than any cancer I have had (even from 2010). It was 5cm in diameter and has 10 under 1mm tumors in the parietal and temporal lobe. I have started to recollect a lack of emotional connection, loss of memory, acting on auto pilot, and not having good decision making for about two weeks. I was purely functioning on muscle memory, working out and doing bare minimal mental work. 

How did I learn this? I re-read emails the week before the hospital with my doctor talking of a HEADACHE and also making plans to start chemotherapy at Cornell and coordinate with Sloan on November 14 and 23 to collect my t-cells for an immunotherapy. I have no recollection of that conversation or making plans. I also wrote nothing down on a calendar nor told Kyle that I was doing this. Me not writing and then talking about the same crap to Kyle (sorry dude) like 20x in a row is unlike me. I am pretty verbal and he even said I was quiet, withdrawn and mooping around a lot. I knew my markers were up and I needed to go on chemo, so the emotional part made sense given what we were dealing with. I also was driving and exercising with this and thats dangerous. I am super glad my temporal and parietal lobe are back. Those areas do things we honestly don't focus on. I am just glad my brain bounced back. I am pretty lucky.

Going forward my doctor is sticking with the same Chemotherapy we have been discussing for two months. She is suspecting the brain tumor is a new beast and is possibly like a BRCA1/2 gene. I am getting thrown on Carboplatin and Gemzar, which is a drug a lot of women with these cancers respond to. Carboplatin increases fatigue and lowers red cells and platelets. Gemzar lowers red cells and platelets and also I cannot drink alcohol on it as it goes right through my liver. I don't drink anyways, so I honestly do not care for that anyway. I NEED my liver before a beer. Just get me a cake people no wine, I will drive you all. 

Next new piece is a quiet large neurosurgical, radiological and psychology team because well now my brain is in the piece. My new radiologist is awesome. I do love my old external beam doctor, Dr Butzbach - who is so kind, warm funny and honest, but I need more focused care with a radiologist who also specializes in breast cancer and brain tumors and new clinical trials. Turns out my new doctor's team trained my old radiologist for my bones, which explains why my medical oncologist in NYC kept me with her in NJ for easier care. 

So yesterday we meet the radiology team - Dr. Sylvia Formenti at Cornell. I fell in love with them. Honestly, we left feeling great.  I was nervous during the CT and she like held my hand during my brain CT. Clearly an awesome, smart, determined funny kind and super involved woman in ways to cure breast cancer with radiation, chemo and immunotherapies. Her and my medical oncologist - Dr Linda Vahdat at Cornell - are really close. I can totally see why as they are both smart, kind funny and have a true desire to find a cure for this. Not many people can say that about doctors (it is sad but horribly true - you can see in my blog, I have been there many a times). She works at Cornell but also is involved nationally for this type of care, worked on the medications for AIDS and then switched to oncology clearly after the AIDS medication came out in the 90s. 

Dr Formenti and I reviewed many types of brain radiation and a few studies at Sloan Kettering she has been involved in regarding immunotherapy and brain mets. She is very determined to not let this close doors to any types of trials for me. She thinks ahead. I need that. She decided on 5 sessions of cyber knife therapy. Cyber Knife therapy is a radiation that uses small beams of radiation to the exact tumor. I would be doing this treatment while I start chemo on the 29th as they work well together to get the chemotherapy into the blood brain barrier. 

We do not have a date of start yet, but I am assuming it will be the 28 to start cyber knife every other day and add chemotherapy on the 29th. At this time I honestly cannot be alone given both therapies tank your red cells, white and platelets. Kyle and I will be asking for people to walk me in NYC to care and also hang out with me at home. My doctors also ordered this to keep me safe. I can walk etc, but no driving or being alone for 4 more weeks. If you want to come by a day, shoot me a text. If you want to be my treatment buddy, come along for a day. All are welcome. 

We also will need help with food. We are good until this Friday, but even take out brought or a small meal would help. I am still working up to my old energy and lately anything more than 30min of standing has been exhausting. If you want to send food ask me, Kyle or one of my parents. I would appreciate the help so Kyle can go back to work and I can focus on healing and getting my butt back to driving, working out and being my old self again.

Next steps are clearer, but not settled.

11/28/16 - Meet new Neurosurgeon, Dr. Ramnikrisna, who also does neurosurgery , gamma knife therapies and invasive types of surgical radiation to my head. We are setting me up with him for the future and have him also follow me every two months with an MRI of my brain. He also will be working with my medical and radiation oncologist as a wholistic part of my care. 

Sloan Kettering - TCELL TRIAL - We are still moving forward with collecting my t-cells for future tcell therapy when this current crisis settles. T-Cells need to be collected at the most opportune time for obvious reasons - THEY NEED TO BE STRONG! I am calling Sloan today to discuss when I should come in and to help my team at Cornell to work with them... both my doctors want me in this trial. The window for the T-Cell collection has to be 1mo post surgery, 14days post radiation, 7days off of any steroid drugs, and 7 days off of chemo. With how this looks, I probably will be getting the collection in January. I am still on steroids, I cannot delay radiation and I need to heal from brain surgery and start chemotherapy ASAP. To do this trial, its one week off of chemo with a brain MRI that has been stable 4 weeks. I may get the transfusion in late winter if my brain behaves. The t-cell therapy is specific to my lung tumor, since that thing is the most stubborn beast, this trial is a great option for me. So pray my brain responds to radiation & I respond well to the new chemotherapy.

  There is also another brain and breast doctor at Sloan - Dr Beal they wanted to connect me with that uses immunotherapy via radiation (shoot the immunotherapy into my head) for recurrent brain metastasis. 

Genetics and Pathology - Not back yet. Pathology comes next week. We are also doing another Genetic Panel. My team has done one on every cancer excised from me to create a big map of every DNA problem my cancer has and to keep my cancer open for new trials in immunotherapy. 

What I was worried about the most:

   Last but not least... why I am not doing whole brain radiation. I know this cancer can get bad and a lot of women die from something called Lepo Mets - fluid in our brain and spine. Lepo mets is not a death sentence, as I have a girlfriend who had it for YEARS and never did whole brain until recently - I think its been 8yrs actually. It is a very rare and can happen once someone has brain metastasis. If its not treated right, clinical trials do close and we are left without a paddle. Thats sad, but its so serious you do need more intense care. WBR and intrathelial chemotherapy ports are used to target our whole brain and spine lining & are highly affective. Regardless all I knew was that whole brain is highly affective on that type of disease and I knew I would want to keep that in play just in case I needed it... you can only do whole brain once, so I would rather save the big if things ever get so big.

   My team reviewed all radiations including whole brain and why it is good and bad. Then we discussed with my team my desire to hold off until its needed and we are on board. The FDA still says whole brain is the best, but my team feels cyber knife is better given my goals and how young I am & also my genuine concern of needing it for lepo mets ever (see i am just planning ahead).

   I have seen 3 women I love more than the world die from Lepo and Brain Mets...There is not one day I do not miss my grandmothers humor and strength, not one day I do not miss calling my aunt kerry to talk about TV and cancer and jokes, and my friend Sheryl who was so smart and funny & a fellow social worker. Brain mets seriously has been a big part of my cancer journey and it does impact my grief, sadness and just depression that cancer is evil and it killed 3 women I admired and considered my best friends. I am seriously sad still and traumatized. I am allowed to miss them. I am lucky I have my family, my uncle, and Sheryl's parents for support. They are part of my home team. 

   Luckily, my team took that emotional in play and did explain why its done and how it does work in some patients. They did explain that they also are working now with my local psychiatric team to help feel OK with having brain mets and losing so many to cancer. My radiation oncologist called my psychiatrist right in front of me too coordinate care with the new anxiety and recurrent PTSD from the cancer in my life and family. 

Thanks all and love you bunches.

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.

Xeloda is Working!

Today's Update is brought to you by 6 giant horse pills I take daily - Xeloda. Dear chemo pills, Thank you for working on my cancer. I am finally feeling hopeful as my tumor markers continue to drop with each 21day cycle.

I hope this drug lasts a long time. It can always change, but for now my bets are on Xeloda.

Side effects are tolerable, because I know it is working. My feet are peeling and my fingers are sensitive to the touch. My stomach is constantly rumbling and fatigue is bad. I have been grateful that coffee, b-12 and a healthy diet have helped me stay alert.

Lets keep hoping my markers drop. My ca 15.3 is 56 & my cea us 47. This is the lowest they have ever been. I need my ca 15.3 to be under 35 and cea under 5. If I get that low... I might be NED! Lets hope for some time with no evidence of disease.