I want my body back from a week ago before I started this new drug. I feel like crap. My heart is beating so fast that I swear I'm gonna be picking it up off the floor. I've had headaches daily, my stomach and pelvic pains are so bad that I've had to give in to the pain and take a pain pill about 3 times in the same amount of days. My joints are all aching and out of nowhere there's new pain in places I probably didn't even realize I have cancer. Did I honestly forget in just 3 months how awful and depressed and out of it these drugs make me feel? What kind of life is this? And holy crap. I haven't even started the second drug to wash the first one down with.

I don't know why I thought that DFCI's drugs, the ones I already took and felt like crap taking, were going to be some candy coated miracle pill with zero side effects.  It's probably because I want to live longer. Probably because they told me that I look "amazing", and it's "remarkable", "Who is the patient" one of them asked as they looked at me then at my sister, then back at me again. I totally thought he was joking. He told me he wasn't.

If that was the case then why did I have to fly almost 3000 miles to be given a straight answer and take the same drugs I was taking before? I am so glad I did because they are the experts in their field and  incredible doctors who are compassionate and smart and want to help patients but they truly want to research more to help others after me. They care at Dana Farber. I have finally felt like someone other than me is managing me. Now I wanna live and not worry. Count me in.

After being home a week following 2 months in Boston, I'm still trying to digest the fact that I was given the unfortunate news that if I didn't take another cancer drug or have another chemo infusion then I would probably not be around in a year or so.

How can 2 (make it 3) doctors have such varying opinions on the same patients case?  I did not go to Boston to find a miracle cure. Let me make that clear. Before I got there I hadn't been on any chemo or estrogen blocker or anything to help stop my cancer from spreading since late May. Nada. Within a month or so of stopping all treatment I finally felt alive again. Ironic? Not really.

I had just started a new strain of what's referred to as FECO. Full extract cannabis oil. This is what makes me look healthy, feel fantastically energetic and keeps me from being a completely depressed, angry person. It's what has saved me throughout this entire bullshit "cancer journey" that I've been on again since 2013.

I'm one of the lucky ones I suppose. I've known 7 people personally or through friends, who have passed on just in the last 3 years since I was diagnosed. Many were diagnosed much after me. Side bar: I had to change that number 3 times as type this. One gal just passed on today. I cried so hard I hurt myself from my own pain.
This is all raw emotion I'm putting down right now. They say it helps.

I'm sitting here at 2:30 am wondering if I should:

A. Call my doctor in Boston
B. Call my urologist at Mayo
C. Wake up my peacefully sleeping husband who also had a rough day?

This is what "doing great" looks like in the life of a cancer lifer. Without getting too descriptive, my dilemma is that I'm having further issues like the ones that put me smack dab in a bed at the emergency room at Brigham and Women's Hospital in Boston last Saturday night which happened to be my eldest child's 25th birthday. What a night.

So these were the questions I was asking myself last night, or rather early this morning, after feeling a not so comfy feeling in my gut plus pains that flashed me back to the worst menstrual cramps I ever had like back when I was 16 or so. Mind you, I was catapulted into 'chemopause' 2 years ago when my ovaries were removed.

I remained calm, which is pretty easy to do for me these days, and I paged my doctor back in Boston.

Once I got his call, he immediately went into his calming explanation of why I am feeling like I did and why what was happening was happening. So, over to you, Ms. Urologist. She is ready to take on whatever needs to be done. I saw her Monday and at that time, a 4th set of kidney stents wasn't necessary at this point. Yay.

So I managed to escape an ED visit along with zero sleep while I was poked and prodded while they tried to figure it out.

He knew exactly what it was. It happened last Saturday night. The lesion on my bladder has been acting up but it's not life threatening. And I trust him. So I went to sleep. And I woke up and tomorrow is another day. I can now be comfortable spending time doing other things now that I am finally confident in my health team and their strategy to provide me quality of life.

Peace and Love

What I Did On My Summer Vacation

We left Arizona for Massachusetts for a family vacation on July 6th not really knowing if I was going to live or die and my life was literally flashing before my eyes. My doc gave up on me for whatever reason and looked me in the eyes and told me I had maybe 6-12 months to live. My cancer had taken over  more than 50% of my bones and had spread (as we already knew) to other areas of my body. They also thought I was a rare and difficult case.

How the hell do you process this? What the hell do I do first? I wasn't ready to die. Crap, this sucks.

Jeff and I dove into action, again. This time it was to update our wills, we talked with our kids and told our closest friends and family what my doctor told us. I visited Sleepy Hollow Cemetery and picked out our interment spots in the town we spent growing up, where we shared a special bond. We thought if we just got everything in order then we could set it on the corner of our desk and live out what little time we had left together. Isn't that what you're supposed to do when the chips are down and you've been told you had only a mere 12 months or so to live?

Fast forward to the same afternoon when we came home numb and crying and hanging onto each other like it was our last night together.

Not surprisingly, I had connections at Dana Farber Cancer Institute. I didn't really know them in person, but I had met them via a weekly twitter chat that I frequented about Metastatic Breast Cancer. I had known enough about both of them to know that I trusted them with my life. Sounds super dramatic but I did. These were 2 doctors and cancer researchers and one is a cancer survivor herself who I admire greatly. I trusted them enough to send them my spit in a kit and give them authorization to use my cancerous tissue in a Metastatic Research program (mbcprojrct.org) so that could help others in my shitty cancer situation. I reached out on a Friday afternoon in a private twitter message and by Saturday morning I was told I had an appointment with the head of the Dana-Farber Cancer Institute in Boston. Incredible, amazing, okay, we'll be there, July 14th.

To try to make a long story short, we went to Dana-Farber and we met the doctor and fellow who would give me hope and agree to take on my case and guide my care closely and carefully. We learned that I am not a rare case at all but the reason why I have Stage 4 metastatic cancer is rare. I have what was they referred to as "An interesting array of genetic abnormalities" and that's quite fine with me.

All I know now, after being in the hands of Dana Farber and given a plan and a direction and an understanding of where I really am in this big game of LIFE, is that I may just be okay. I may be able to plan things again without the fear of dying getting in the way. We leave Friday to go back to Arizona and I'll be armed with 2 oral prescriptions and orders for pain & side effects management and an appointment to be back in Boston in 3 months. My care will be co-managed with my doc in AZ and life will go on.

I haven't quite digested what all has been presented to me just this morning, but I do know that I'm not meant to die yet. My journey isn't over. My job isn't not done. Whatever it is, I will take it.

As cliche as it sounds I have been given the gift of time. I know what's important in life. I've been thriving for 3+ years and I intend to keep doing what I am doing as long as I am able and so I get to live life to its fullest and keep checking the boxes.

And I thank you so much. My family, my friends, strangers who have prayed and sent me positive juju. I am one of those people who believe in the power of positive attitude and prayer and all that stuff. I don't know what else to believe in.

I'm alive and hope to stay this way a while. Life is for the living so bring it on.

Quality of Life with Stage 4 Cancer?

I just happened to stumble upon this story of this man with stage four liver cancer who has also used cannabis oil as another modality to treat his pain and side effects of cancer. I was diagnosed with stage four metastatic breast cancer 6/13/13 with innumerable tumors through by entire spine and abdomen and lymph nodes, etc. I too was off all opiates: Vicodin-Percocet-Morphine ALL OF IT within 3 months of Cannabis oil aka FECO- Full plant extract oils made with FOOD grade alcohol. Please take the time to get educated. There is such a thing as QUALITY of LIFE while thriving with stage four cancer. I'm living proof. 
Peace and Love to you.