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