Tuesday, October 04, 2016

** Update **

Since my arrival at the ED where I was admitted last Wednesday after I had my 4th round of kidney stent surgery 3 weeks ago, right after my health began declining about 3-4 weeks ago. Right after we got back from Boston, I noticed some issues where my kidneys weren't draining properly and due to the amount of pericardial fluid that had built up again around my heart, I was no longer able to eat any solid foods or even liquid. They finally tapped me and removed over 740 millimeters of fluid that had been trapped in there for at least 3.5 years. What an instant relief now that I can actually sit up and take a deep breath for a change. I'm anxious to see how my quality of life techniques will work together to cool it down a bit.

Since then, I have experienced shortness of breath due to the build up from hydronyphrosis and they also managed to drain 740 millimeters not 570 liters of fluid from my heart which was over 5x the normal amount.

The 2nd procedure was super a relief as well and is now how the kidney is being drained into an external bag in my back to assist with the draining of my right kidney is my new procedure to keep my kidneys working.

In the last several days they've managed to control my pain through palliative care with just the amount of pain control  needed plus all the other stuff like management of side effects for the pain pill, etc. gosh  there is must more to know when some one is living this ill, yet still  managing quality of life. Palliative care and Hospice Care are availability to you so please reach out if you need need to live with assistance. It's incredible life changing.

So our plan is to pack up the cars, the dogs, the humans and as many instruments as possible and we're heading back east for a cold, dark, long winters nap with family and friends. One way or another I'll be close by the people I love and those who care about me too. Ain't life grand? I get to choose how I want to live my life, with who I want to where I wanna live it.

Sunday, September 04, 2016

I'm in a mood.
Oddly enough it's an okay mood. 
I think my mind has finally hit somewhat of numb state.
I'm numb from the emotional ups and downs from the good, the bad and the ugly news that we've had to listen to for the past 3+ years with this BS. The past 2 days have been no exception.

I'm feeling really good about the new healthcare team that I proudly assembled.  Finally, I had a bit of time and a clear enough head to come to my senses to pull together an impressive team of doctors to oversee my bod from here on out. Between Dana-Farber Cancer Institute in Boston, my 3rd Arizona oncologist who also happens to be my 25 year old daughter's oncologist (Li-Fraumeni monitoring thankfully) and my compassionate urologist/surgeon who treats me at Mayo, I feel great. The difference now? I can finally relax and live my life with this effin' effer and not have to constantly play 'Google MD' because it was evident that no one but me gave a rats ass about me. 

 Instead of wasting my precious seconds or minutes on BS,  I've been able to let go of the things I can't control and just let things fall into their place. Whatever that means.

This week it means that my kidneys are failing again. My 3rd set of stents were removed on May 18th. Trust me, it's so uncomfortable that I remember the day they were removed like I remember the birth of my kids. I had a lovely nuclear kidney scan yesterday on our 12th Anniversary. The big surprise was learning I had to be catheterized for over 2 hours for the procedure. That and a water medication intravenously to speed up the process to get fast results.  Here's what I said to the tech as I was wheeled into the room. He pleasantly and genuinely says, "Hi, my name is X, how are you today?" I could not will away the urge so I responded with "Well, I have a bag of urine on my lap so I'm not real sure at the moment". I promise you I didn't say it with a straight face and eventually we were chatting it up so every ounce of shame musta went out the window pretty quickly.  The scan was one of the most uncomfortable things I've ever done in this whole whack of crap I've been through. I'm not kidding. You can gouge a hunk of bone out of my back for a biopsy but do not even THINK about catheterizing me. Thank goodness for nurse S is all I can say. 

 Moving on to the housekeeping for the week, my left kidney is running only on about 20% and my right is doing a shit ass job of keeping up. I would so fire that kidney if I could. 

What does this mean? It means I go back to the operating room on Wednesday for a shiny new set of stents. All 3 of them. Plus,  my skilled urologist is going to gently remove as much of the tumor that is on my bladder as she can. The strategy is to remove just enough to relieve some of my recent symptoms as well as to confirm that this is still the breast cancer metastases and not a primary bladder cancer. Based on the past results from my ovary, bone, abdomen and liver spread, the doctors are fairly certain it's still the breast cancer that had spread again as were noticed in the last bunch scans. As long as its still hormonal we'll be able to stay on track with the original treatment plan.

I'm still just living as best I can and my doctors are still giving me hope. I am not close to being out of options medically or holistically and for that, I feel okay. 

Tuesday, August 30, 2016

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.

Friday, August 26, 2016

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

Tuesday, August 16, 2016

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.

Sunday, August 07, 2016

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. 

Monday, July 04, 2016

The Caregiver by Jeff Oliphant

The Caregiver   
by Jeff Oliphant  

In October of 2006 My bride Tracy was diagnosed with stage 2 breast cancer. Little did we know that our lives would change forever! When your world is turned upside down by a cockroach of a disease like cancer you can choose two roads; curl up in a corner, feel sorry for yourself, and let the cockroach cancer take whatever laughter, joy, or love for life you have left , or choose to live! We decided to choose the road of living, loving, laughing, and the loyalty road, because that’s what was the smart approach to take  As for the cockroach cancer... It no had idea the fight it was going to endure in the years to come!  

In 2006 from November to New Year 2007, Tracy had bilateral mastectomies, two drains (I got the nickname Dr McDrainy, because I helped Tracy empty the fluid from her surgery... So I got that going for me :), a new Lexus, and reconstruction surgery (She will always have bigger, never sag boobs. So she has that going for her :) (did you catch the reference to Princess Warrior?) In Jan 2007, Tracy started her chemotherapy. A/C/T = nasty stuff! We would go up to Hooksett, NH and spend 4-5 hours every other week getting infusions and one was called Red Devil. Are you kidding me!!??  At the time you are scared and confused and listen to whatever the doctors say! They are the specialists after all!? I would sit with my DVD player and watch season after season of the HBO show 'The Wire' to pass the time as Tracy would sleep through most of her treatment. I always had one eye on the DVD and one eye on Tracy at all times.  They had snacks so when Tracy woke up she would look up with her gorgeous face, smile and eat a granola bar. I learned very quickly that the 6-7 days following chemo were very tough on Tracy; lots of pain, nausea, and countless other side effects, such as Neulasta, a shot that stimulates and helps with white blood counts to bring the the levels up. Well, the pain associated with the drug in Tracy’s words were unbearable! Yet not to long ago I saw a commercial for the drug on TV! (No Way Really?!) Yet during this entire time, Tracy would not use Cannabis? ( We had no clue at the time. More about that later in the story) As a caregiver my job is to keep things as normal as possible when there is nothing normal about the situation. I was scared, confused, angry.  I felt like I had been hit in the head with an old school 1970’s cast iron shovel! I found myself going into a dark place, but I pulled myself back into the game and reminded myself that this is the time to shine as a caregiver and whatever the situation was handed to us going forward. I was ready for the challenge! 2007-June of 2013 were the remission years! We lived like game of throne kings and queens. Family, traveling, kids, family, new jobs, parties, our lives were thriving! Then June 13, 2013 our lives would be changed forever! Tracy was diagnosed with stage four metastatic breast cancer! The breast cancer had spread all over her body as if a grenade had exploded inside her! I remember being in the hospital with Tracy and doctors from all departments sadly telling us the dire situation. One doctor hinted to me to start getting our things in order. “ Things in order!?” “What the f is metastatic cancer?!” It’s when a cancer decides to move from one part of the body to another. It becomes incurable. In Tracy’s case her breast cancer decided to spread to different parts of her body yet it’s still treated as breast cancer?! The only problem is that it becomes very difficult to treat, it changes form, it hides, it messes with you mentally and physically and it goes to unimaginable places. It does whatever it can to survive then conquer! The Suck Bag cancer is very smart! Tracy came back home, where for the next few weeks I noticed her situation was getting worse not better! The pain pills, chemo (Gemzar no hair loss. That’s very important to a woman, I found this out with her first of many battles with cancer she would cry about her hair, but she had a beautiful head that you could kiss and rub. Like an old style 1974 whiffle :) I then realized I was losing my Bride! The feeling you have is indescribable. I just wanted take away the suffering and make it all normal again! We were in our foxhole, the shells were exploding around us and I needed to get her quickly to the nearest, safest, perfect fox hole. Tracy would not survive very long if we stayed in this situation!! I then got a call from a very close family member. “Jeff take a look at what is happening in the world of Cannabis, many people suffering from all types of ailments and using Oils, flowers, edibles to use it as a medicine for quality of life.” I’m thinking pot, grass, boo, weed, marijuana, how can this help?! “  Jeff, he kept saying just research it!”  I talked it over with my bride and we researched, and researched and researched. We decided to give it a go and use Cannabis as a medicine to help my Bride. I would crawl across hundreds of miles on sharp scrap metal if it helped my bride have a better quality of life! I called another very close friend and told him the situation, and what medicines we needed. 2 hours later he had the medicines we researched and that we needed to start Tracy on he new Cannabis therapy journey. I did procrastinate for a while, and I have to credit this friend, because he was the one who pushed me to go up north and get the medicine! I was scared, confused, in a really fucked up place mentally, but the life of a caregiver must go above and beyond at all costs, taking on the unknown...sometimes it meant taking risks. I flew up north and ext to me on the plane were a young couple that DID NOT believe in hygiene! I’m trying to keep it together and accomplish my secret Cannabis mission, and I’m gagging every time they moved. Which is a lot on a 1 1/2 hour flight.  I landed, hooked up a get away car and drove to pick up the Cannabis medicine. I started my journey back home in the get away car (Dodge Avenger) with medicine, fantasy football satellite radio, snacks, cruise control, and 14 hours to think about how I’m going to keep my Bride alive! I did the trip in two shifts I stopped off in Albuquerque, NM and spent the night at a 3 star hotel. I didn't sleep that night as you could imagine, but I had the medicine and I was half way home and I just wanted to be with Tracy! I can drive like a seasoned pro since I learned how to drive long distances on little sleep with the Dipper! Didn’t get scared because I was full of adrenalin and I was half way home! As I was leaving New Mexico around 6am air balloons were rising into the air and I remember for a brief moment that everything was going to be ok. I made it back to AZ! Yep the secret mission was a success I ditched the get away car and our lives would never be the same again! My bride and I looked at the medicine for a while and I was the first to try it out so I was the first guinea pig.  It was this dark oil in a tube, very concentrated so I put about one rice grain size and swallowed! I can ingest Cannabis with the best of them, but let me tell you!! I was frozen on the couch for 4 hours, yet I was feeling very euphoric. It was very calming and my anxiety was gone! “Woo Hoo”, I thought, my Bride is going to like this. It’s September 2013 and the dosing starts out very small. Literally with one rice grain in the morning and one at night. The next week 2 rice grains, and continue to up the dose little by little getting her body to build up a tolerance. By the first month,  I notice many positive changes, she was eating, sleeping, without nausea, less pain, less fatigue, and a lot less depression! All good, especially while taking chemo! I had her up to almost gram a day by November and the real real test was about to face us. How will her scans come back!? I had a feeling they might be good because of the way she was feeling. I do know this as a caregiver and I keep a close eye on Tracy and there are certain signs to look for.  I can tell when she is in a good place by her physical appearance, if she has energy, the color of her skin, emotionally, weight-wise, and in her engagement in everyday life. We were coming back to life from a near death experience with cockroach cancer! The night before a results appt. is a night of no sleep and anxiety for both my bride and me. We walked into the office hand and hand to get the results!  “All mets have run away except mets in the spine”. Now some people might look at this as still scary news!  It’s still in her bones but all the countless other mets have run away and hidden for now. Now I’m not saying Cannabis is a cure but I do know that I’m finding out that suck bag cancer does not like cannabis at all! Tracy’s feeling good, looking beautiful as ever and the mets have run off. We made it safely to the next foxhole holding each other close but we discovered that cannabis would become a huge ally!! This would not be our last foxhole! We continued to use western medicine and cannabis to battle the suck bag cancer along with oils and diet. My bride got her cannabis card and we started using it as a medicine for daily use immediately. We started to read blogs, websites, learning as much as we could. The tumors were reduced to near remission. I reduced the amount of oil at this point and gave her only a small amount a day as we we told we could go down to a maintenance dose as you will. A decision I regret to this day! A year passed, we lived, loved, and thrived again like queen and king. We made another trip up north together to get more cannabis and as it turns out the medicine man turned out to be an asshole to put it kindly. Yes he got us the medicine, but when Tracy had a few questions about the oil he acted as if he was being bothered and he was about as compassionate as a great white shark eating a meat bone! We drove home together 10 hours straight and I’ll never forget how we talked for 10 hours straight. We were laughing, crying, telling stories, listened to all kinds of music, we stopped along the way because Tracy had to put herself in 4 states at once. We stopped along the way to just see the sights. Ahh, the little things in life that make it all worth the hell we go through every day!  Well, the shells started landing all around our lovely foxhole again in October 2015 when my Brides cockroach cancer had regrouped and attacked the peritoneal and omentum, the lining area that that protects our organs . It is rare ( of course). Because of the cancer, it was blocking her ureters so she had to get stents placed into her ureters in November because her kidneys were being damaged. Most people have two ureters... my bride has three :) need I say more:) Again, the diagnosis from the doctors “get your things in order” apparently this is worse than having multiple mets in your body like in 2013!? Are you fucking kidding me! My bride hid the diagnosis from me, she new how dire the situation was. I didn’t want to know and I just wanted to care give for my bride like I have from the very first day I met her. So I did. We read the diagnosis together later and there was only one paragraph of information. It basically said a death sentence! Why did I put my bride on a maintenance dose! How am I going to get my bride to the nearest safest foxhole, I kept thinking?! As a caregiver you learn very quickly to respond to the suck bag cancer. “Wait a minute” I’m going to fight it just like last time with heavy doses of cannabis along with some western medicine. This time we will use cannabis as the FIRST line of defense against cockroach cancer! I had two weeks before my bride again had to start the chemo pill, I had to act fast! I got more oil and started dosing,  quickly upping the dose for the next two weeks. As she went through chemo we not only noticed that her side effects were less brutal ( side effects from many western medicines can be horrible on the body and with no idea of long term effects) she was getting off many medicines that caused those nasty side effects (not one pain pill for 2 1/2 years), eating, sleeping, laughing, loving everything that cockroach cancer hates. We ran from the foxhole searching for a new foxhole for 6 months and I had her back and hand the whole time. I took a few hits and fell down a few times during this fight and my bride was there to pick me up:) As we zigged and zagged,  calm, cool and collected, we found one! Once again her suck bag cancer was in remission. What?! But they said you had no chance? Doctors to this day can’t understand how my bride is still alive! I can believe it! The celebration was cut short yet again :( 

We found out that my bride’s cockroach cancer has attacked and invaded many of her bones, a surprise attack at night with heavy artillery.  I feel as if we are surrounded this time and finding a safe, comfortable foxhole is not going to be easy. We will use the same strategy as before with different strains of cannabis, Love, laughter, friends , family, Pugs, western medicine, strength and WILL. Every ally will be needed for this next battle.  

When I first met my bride and on the day we said our wedding vows, the most important words were “in sickness and in health, in death do us part” those are words we live by not just speak! I’ve learned that no matter what life throws at you caregivers are in the trenches every day, and during good and bad times it can be a brutal job at times, but a very rewarding job at the same time. It was my bride that showed me how to turn a shitty situation into living, laughing and loving. Every day as a caregiver I find away to make sure my bride’s day is a little more special. We all know what buttons to push to put a smile our partner’s face, that’s why you’re together in the first place. Push those buttons, study those buttons everyday. Whether it’s a song, a candy bar, a loving phrase, furniture, anything that betters that day and do it everyday and often! You can push the buttons that YOU know upset and stress out your partner, then turn and say “I Love You?!” Bullshit. That’s a selfish hypocrite and then you wonder why you’re in the dog house!? We caregivers must understand that if we are a mess, imagine what your partner is going through! When you push the happy buttons it’s the greatest feeling in the world. Sometimes it doesn’t work but I effing try and I never stop and neither should you! Separate the men from the boys and the woman from the girls. We have to take care of ourselves, it’s hard to figure out when your world gets turned upside down! Ask for help! You're going to need it! 

So here we are again. My bride and I.   
Looking for our safe foxhole. 

I will grab her hand and take many bullets along the way and do what ever it takes to find it! My bride has not given up the fight!

I want to thank everybody who has helped my bride and I through this battle! Your texts, snapchats, letters, cards, visits, whatever it is,  it ALWAYS puts a skip in my brides step and we love you for that :)

If one day, I reach for my brides hand and she decides not to hold it to find the next foxhole... I will understand why. It’s a double edge sword.  I have been given the greatest gift ever. The gift of Tracy Knox Oliphant. Every day for the last 14 years but suck bag cancer wants to take her from me! Fuck you cockroach cancer! We are not losing a battle. As long as we live, love, laugh and keep smiling - suck bag cockroach cancer is losing miserably! :)

Saturday, June 25, 2016

Reality Hits like a Ton of Bricks

This isn't much of a post, but rather just a quick update in the form of a horrible email I sent to family and close friends with an update. Jeff and I went to the Doctor yesterday for the results of my MRI last week. It wasn't good news and I am basically loaded with cancer again. I knew this before she opened her mouth actually. I just didn't know how bad it actually is. Please read below for where we are at: 

"I so wish that this email had a more positive spin on it, but we're back in the weeds with the cancer. I had been feeling great energy wise, finally had my kidney stents removed and my blood counts looked pretty good, etc. However the inside of my spine and bones have been having an effing party. We found out yesterday that the bone tumors are all back and then some. 
"Extensive" "Widespread" "Innumerable"  

My Oncologist told me that if she were to do an MRI on every bone she's fairly certain I would have cancer in every bone in my body.
I'm gonna leave it at that because no one should have to listen to the rest.

Bottom line is that Arizona doctors have done everything they can do for me so Jeff and I will be going to Boston for a Dana Farber Cancer Institute appointment. This is all on the heels of our Boston/Brant Rock vacation so we will be in the area a few weeks in July.
We will be staying in Newton and not sure when we will arrive but we will keep you all posted" 

Yes, it sucks. Our family is in a complete daze but we'll be ok. I've got one of the best Dana Farber doctors on my side, PERSONALLY working on getting me in with one of THE best in their field. This is still somewhat optimistic news and once I get there we will know if there are any other treatments that my cancer may respond to. If not, we were finally told that without any further treatment I can live between 6-12 months more. I want to live longer, but not if my life will be shit. I get to decide when I'm ready to go and I'm not done here yet! 

Boston, we're coming back.

Peace and love

Wednesday, June 08, 2016

PJs and Prada

 Uncle Jackie* came to visit last week for an impromptu,  LA to Phoenix getaway. Uncle Jackie is really our honorary cousin. You know,  the one that isn't really a cousin but your parents were best friends before you born so they raised you as if you were related by blood? That's Uncle Jackie.

We spent every single year together whether it was a trip out to California or they'd trek east to Boston since they could fly non rev quite easily back in the 70's and 80's. Every summer or school vacation we'd head to California to visit our Grandparents in Encino and then we'd always head over to Culver City to Jackie's where there would be a week of crazy times with very little adult supervision and lots and lots of innocent kid fun.  The old house in Culver City was fairly small with only 2 bedrooms so our parents would sleep in Jackie's bedroom and all of us kids would sleep outside in what we referred to as "The Smelly Green Tent." Uncle Dick had this old, moldy, smelly, green, army like tent that, you guessed it, was the kids "room".  Next door lived June and her grandson Eddie was always over and when we came to town, so did Eddie. He was part of the Smelly Green Tent So, while our parents drank martinis and talked or played chess, we'd be tearing it up doing whatever we felt like. At 10 or so, dress up and pretending they were  "Jackie of the Jungle and Andy of Africa" was as wild as we really got at that age. We did make up a song called "We all Live in a Smelly Green Tent" sung to the tune of Yellow Submarine.

Our mothers earned their wings as stewardesses in 1956 and 1957 from TWA and remained best friends until the day my mother died in 2009. While my mother only flew for few years before she had to stop in 1963 because my brother was born, "Aunt" Luke went up against the airline (after they wanted her to stop flying) in 1966 when Jackie was born. She won and kept flying for 50+ years in like the #3 seniority spot (or some awesome spot like that) up until American Airlines pretty much forced many of the "lifer" TWA flight attendants to take early retirement when AA bought them out. (here's where I hold my tongue) The airlines have never and will never be the same in this country.

I digress.

Since I was diagnosed almost 3 years ago with my breast cancer recurrence, Uncle Jackie has been taking advantage of our geographical convenience since we moved to the Southwest and has been hopping over for our ritual of luxe Nordy Spa pedis, yummy Scottsdale lunch favorites like Zoe's Kitchen and Sauce (omg you have to have the chicken and pine nut salad!) and sometimes we take a brief spin through The Rack or some other place. On this outing I managed to stay vertical for long enough to go over to Neiman's so I could start checking out my dress size of the month (I have got to stop losing weight!) for a dress for a very special friend's NYE's wedding!

First major fail? Letting Uncle Jackie take me over to Neiman's. Second fail? Walking out with a pair of Prada shoes. Fail #1 and #2 by the way, quickly turned into win/wins let me tell you.  ZERO regrets.  Special occasions call for special attire and my beautiful friend Beth's wedding is going to be THE most special NYE wedding I have ever attended. Okay, I've never attended a NYE wedding, which is most likely why I am obsessed over this wedding and wearing the perfect dress to wear alongside my handsome hubster.

This outing was all about "soft clothes" as my witty friend April calls them. (or otherwise known as pajamas) My wardrobe these days consists of PJ's, bathing suits and/or beach towels wrapped around me like a dress to soak up the typhoon that my body produces daily from the chemo. I decided that this is just my life now so I just embrace it :)

These are the visits that warm my heart and soul. Pjs and Prada. The perfect visit with Uncle Jackie.

*Honorary cousin Jackie was lovingly called 'Uncle Jackie' by my almost 16 year old nephew who was a bit unsure of gender differentiation and at the time. He wasn't sure of who was an Uncle or an Aunt so it obviously had to stick as the greatest nickname ever

Wednesday, May 25, 2016

In the Blink of an Eye

Health Update:
May 3rd NO evidence of disease/normal blood cancer markers 
May 13th - Cancer is back (in less than 10 days!!?)
May 18th - surgery to remove Kidney stents (yay) 
Today - Back on chemo with HOPE it's going to kill these suckers faster than they grow.
New scans this week to figure out where it's spread.

Here's what we know: 
This cancer is a rare and an extremely fast growing type of er/pr+ Her2- Invasive Lobular Carcinoma breast cancer. It's acting more like Ovarian cancer at the moment and it's tricky to treat. But it's growing fast and I can feel it. I'm sick but not ready to give up.
I'm tired, I'm in agonizing pain at times, I'm fatigued, I can't eat much, I'm shrinking, I'm scared shitless of dying and I throw up and I cry ALL.THE.TIME. (we laugh a lot too) BUT I AM NOT READY TO GIVE UP YET.

I have a couple more med options before I have to give up on the chemo. So.....I will do what I can, for as long as I can, with what I've been given.

After that it's up to the universe.

Until then, I've got my beautiful kids here with Jeff and me and we are a family and it's fricken perfect. They are a huge help to me but more importantly Jeff.
He's taken on so much its like he's been hit by a truck physically, spiritually and emotionally. Our job now is to keep looking after him so he can continue to be the Chief Cancierge caregiver. A job that he has mastered in the last 10 years.

So for now, WE LIVE 

Peace and Love friends,
Princess Warrior

Part I written in 2008, Part II is being written now.

Friday, March 18, 2016

Time to reflect

Reflection time. 
After having my first round of my 2 monthly Faslodex injections and 2 weeks into my Ibrance I finally almost feel like a human. Anyone know what an Ultra Rapid Metabolizer is? ME. My body eats up and churns out pharmaceuticals uber fast so my body is hyper sensitive to side effects. I bitch about them all the time but I do know that together with the cannabinoid therapy, it seems to be an ok combination. At least the cancer has responded to the chemo so far, which is always the goal. The problem with the chemo is that I get side effects to the enth degree so many times I've had to ask to reduce my dosage as to not completely take away ALL quality of life.  Lying in a bed practically comatose from pain and puking isn't quality of life to me. Here's what my last week has looked like: Vomiting, chivering, extreme pain and swelling in my right thigh and leg from the Faslodex injection, loss of appetite, weight loss, headache , body aches, pain with ANY light touch, omplete and utter memory loss, confusion, lack of motivation, irritability and on and on and on. I was just blessed with a visit from some of my best lifelong friends from back east which was so special and much needed. Love and friendship is so important and having a strong support system when living with an illness is key to survival. After the long and rough fall I've had with the last progression (spread, new cancer) to my peritoneal cavity (which evidently is rare). My mental state hasn't been exactly where it needs to be. I'm allowed to feel like this (I think).  THIS is not the TKO that my family and friends know. The real TKO with the positive attitude and outlook and never giving up Princess Warrior? That's still me. Cancer got a hold of my mind and soul for a minute and it almost took hold. Something bigger and stronger than me sorted me out and I feel like I am emotionally and somewhat physically starting to get back on track. Today I've decided to pull up my bootstraps and get myself back to living and thriving. I can't let the cancer take my soul. Not yet. 
#metastatic #breastcancer #stage4 #stageleft

Monday, January 11, 2016

Li-Fraumeni Syndrome: Did you know there's more to learn from genetic testing than just BRCA1/2?

 I frequently find myself scouring the internet in hopes of finding one woman or man, someone who has been (sort of) in my shoes so I can relate to their story. Someone who knows what I feel like right now.  The research is so new, the reports haven't all been written, no stats have really been confirmed, but thanks to God we have an understanding of this syndrome that literally predisposes a carrier to upwards of a 93% LIFETIME cancer risk. I'm not just talking about Breast Cancer. I am talking about several types of cancer that include breast, brain, colon, prostate, etc. Pretty scary to have something like this hanging over your head for my sister Stephanie, a mother of 2 who now will live in fear of illness for her or her school aged kids and how about my 24 year old daughter who went through with the testing only to discover that she too carries the dual gene mutations like me. My son has decided to test however does not want to know the outcome. He said he would do it for the family but would rather not know his fate at this point in his life. Its a tough nut to swallow and I am so proud yet really afraid for my daughter for taking this on at her age. Of course the silver lining is that we know. We know to start watching now. Not at 35 or even 25. We will certainly be vigilant and keep up on and be a part of this new research and also get involved with others who share the same future. This syndrome is very rare. I now know why it was so difficult to find others like me or me like them. 

Let me tell you what I mean. I can't recall if I've written about the Li-Fraumeni (LFS) or Li-Fraumeni Like (LFL) Syndrome that I have been diagnosed with. This means, right now in the VERY infant stages of research, if we were 100% like the statistics of this predisposed cancer syndrome, then I would have had a lifetime cancer risk of 93%. Let's just say that I never knew this prior to even my original breast cancer diagnosis in 2006. In 2008 when I went ahead with the genetic testing to determine if I carried the mutation in either BRCA1 or BRCA2 or even both, there was no mention of the other 21 genes so I never thought anything more about it. 

In 2014 I cheated on my oncologist for a second opinion and possibly a new treatment strategy and he immediately told me about this new genetic panel test they now suggest we take as a family with several cancer morbidities. After spitting into a couple of empty tubes and waiting 2 weeks for results, it was determined that I carry, both TP53 and CHEK2 gene mutations. The fact that I carry 2 mutations is rare in itself, however, Li-Fraumeni Syndrome reports show that just about 500 families in the US are registered with having this syndrome. 

After my sister was diagnosed with the same TP53 gene mutation as I was, she immediately made an appointment with the genetics department at Dana Farber in Boston and shares the following from her meeting:

 Dana Farber has been doing extensive research on “classical” cases of Li-Fraumeni in which all of the statistics and cancer risks were determined from this research.  Unfortunately, they had not realized that there were many people that had the gene mutation, yet did not follow the “classic” pattern of risk, or show signs of early onset cancers.  Now that the multi-panel gene testing is readily available and affordable to have done, they are uncovering more cases of the Li-Fraumeni-like (LFL) or “non-classical” cases of this mutation.  That’s the umbrella we fall into, and although Dana Farber is an amazing research facility, it depends upon donations and grants in order to complete certain genetic research.  Currently, a two year, whole-body MRI research study is underway, with hopes of raising enough money to begin a second study, those that are found to have the TP53 mutation will be eligible and placed on a waiting list. Any family (such as mine) that is affected by this syndrome will be taking part in the early days of this research to help identify the risks associated with Li-Fraumeni-like syndrome.

Here are links to more information. We’ve spent hours trying to digest what we can in order to get a better understanding of what we are facing. Our plan, led by Jeff,  is to get Alyssa seen by the genetics folks at MD Anderson in Houston since they too have research trials that we hope to get her involved in.  As we learn more in the next few weeks we will share more. 

As always, thank you all for the support and prayers and special juju. My entire family thanks you from the bottom of our hearts. 

The National Cancer Institute

The Li-Fraumeni Exploration (LiFE) Research Consortium

Sunday, November 22, 2015

Scan.Treat.Repeat. It's never really gone.

This is what we do when we are living with cancer.

It's never gone.

We find it.

We treat it.

We live life for a bit.

We find it.

We treat it.

We live life for a bit.

I've lost count how many times now but its back. But it's never really gone.

We just find it. We treat it. We repeat.

The last few weeks have taken a bit of a toll on us. Physically and emotionally, I've been challenged a bit more. Lots of tests, another biopsy, another surgery, more pain, more tears, more bad news. I handled it. I may be a bit more achy, tired, uncomfortable, sad, scared and depressed but with my hand on my heart I can say that I have never felt more at peace with what is going on with me and I could not be happier than I am now.  My kids have both been here for a bit now and having us all together is wonderful. I'm living the best life I can right now. And I am very happy.

So next up for me? I treat it.

For one, I start a new chemo drug on Monday. Second, I started a new strain for another 90 day cannabis oil treatment. I've been doing this for about 3 weeks now and I'm feeling a lot better already.   This is also going to prepare me to take on the new toxic beast that is about to infiltrate my otherwise healthy body and knock down all the good in its path.

I never ask this of anyone but I always appreciate it so much when you tell me that you pray for me. I do feel it. I'd love it if you prayed for me. Just pray for me to get another bit of time so I can do the things that I haven't done yet. I've got things to do. I'm no where near done here.

Thank you for supporting me.

Thursday, October 01, 2015

UGH, Pinktober cannot end soon enough

Hear me out: It's October 1st and soon (if not already) we will be flooded in a sea of Pink. I used to be behind this 100% until I learned what it meant to live with an incurable breast cancer. I don't wanna see pink and I will not donate to pink. All PINK does is line the pockets of the companies who produce the pink products. ONLY 7% of the money raised for Breast Cancer goes to Metastatic or Stage 4 Cancer. THAT'S IT! And you wonder why there isn't a cure? PEOPLE, THAT LEAVES a whopping 93% of funds that are going to AWARENESS & large salaries. Raise your hand, who here DOESN'T know anything about Breast Cancer? Early detection does not save lives. It sure as hell didn't save mine. Its time to see a major shift in the strategy of SGK and other Breast Cancer orgs who claim they are desperate for a cure. Susie Komen obviously died of MBC so what gives? 
Every day in October I'm going to post another fact about MBC and I am going to educate anyone (including people who have had or are in remission) who would like to learn about the cancer that will eventually take my life and another 40,000 Men & Women each year. That's 108 people each DAY who will die from Stage 4 Metastatic Breast Cancer. The following facts are shared from mbcn.org
October 1. Fact 1.
1. What is Metastatic Breast Cancer? (pronounced as Met-a-STA-tic)
MBC also known as Stage IV is cancer that has spread outside of the breast to other organs such as bones, liver, lung or brain. This process is called metastasis.(pronounced as Me-TAS-ta-sis)

#MetastaticBreastCancerMonth #Stage4NeedsMore #PinkribbonsDontSaveLives

Friday, July 03, 2015

Still 'NED' No evidence of (active) disease

I've been super behind in updates here and I'm embarrassed to say that I am trying to get better at writing so I've been seeking out advice from my personal "Grand Master" writer and agonizing over what to post next or rather how to "fix" what I've written. This is where I get stuck. I lose motivation so easily so I'm working on that. In the meantime, here's a quick update off the cuff.

My "innumerable" tumors (as written in my radiology notes) are still chilling,  keeping the party quiet so I'm still good. The latest scans showed no new cancer.

I  told my onco that I'm really not taking the Letrozole any more. Maybe 1-2 times a week if that. And at this point, why bother? I hate it. It ruins my life. The side effects; my aching bones, my headaches, my TMJ - I'm not sure if that's just the s/e of the Gemzar shot I get monthly or a s/e of the Letrozole. Either way, it sucks. My personal opinion is that they don't work anyway and all those cancer meds do is play with your mind and ruin your quality of life.

My favorite side effect of all side effects? The intense dizziness that literally keeps me from getting behind the wheel of a car. Anyone else know what it feels like to have a car sitting in the driveway & things to do but you can't drive most days? It's especially painful when that car costs you another mortgage. All kidding aside though, it stinks.

People don't agree with my choice, or like it very much but it's my choice.  I realize I'm pretty much taking my life in my hands by not taking anything pharmaceutical but rather relying on changes in diet, alternative medicines, different Ancient Chinese Therapies & attitude to keep me alive. That's my decision to make.

Stay tuned for more on that...

(Here's hoping it goes well...)

Peace, Love & Life

*Full Discloser - I don't give a rats ass about grammar or spelling mistakes at the moment so don't judge

Saturday, March 21, 2015

World Down Syndrome Day - Probably my most personal post...It's time.

The end of May will mark 10 years since Jeff & I lost the only child we would ever be blessed with as a couple.

Despite the past 9 years dealing with cancer,  I can say with my hand on my heart that this was one of the most difficult times of our lives.

Jeff and I were married in Bermuda in 2004. We went to high school together but we were never a "thing".  I don't believe in magic or happenstance. I believe that everything happens for a reason and that we are left with the pieces to try to figure out what that reason may be. I'm still searching for answers to SO many reasons why things went down the way they did.   Jeff was 39 and getting married for the first time and I was a 38 year old divorcee with 2 beautiful little kids (9 & 11 at the time) who are my whole world.  Jeff adored them and they adored him. They didn't call him "Dad" but they sure told everyone they met that this was their other "Dad".  He watched and even coached for one of Frankie's baseball teams, never missed a football game. He sat for countless hours among all the other "Dads" at Alyssa's weekly cheerleading competitions and even knew the words to the cheers. He was and is an incredibly caring and loving father to his step kids. (Funny, he's never once called them this...) To him, they're his kids.  My life & theirs was forever changed in the most beautiful way from that time on.

Everything happened quickly in our lives at the beginning; meeting,  getting married, Jeff being a dad to my kids. We didn't force any of it. We just lived our lives as happily as we could, turning one event after another into a fun and positive life memory for our little family unit. Something was so blatantly missing. I was blessed with this adoring man who loves me & my children unconditionally. He deserved to have a child of his own. We deserved to have a child together. So we got to it :)

We did it. We got pregnant and our child was due in October 2005 which was right around my 40th birthday. How fun was this going to be celebrating the birth of our child as I was turning 40?  It happened fairly quickly despite my age. I was sick as a dog.  To me, that was a great sign as I was always told. "The sicker you are, the more healthy the pregnancy." I was naive, as most likely it was a male OB/GYN who came up with that one. Sorry guys. (have you watched the video of those 2 men experiencing "labor"?) I digress.

What came next were the prenatal screening tests that anyone over 35 are offered to determine whether there are any birth defects. The test was taken sometime between 11-14 weeks and was a simple blood test and an ultrasound. Our results for the likelihood of Down Syndrome showed that our chances were 1 in 200,  it didn't phase us. At that same time we learned that we were having a little girl. We were so excited and nothing else mattered at that time. We never look at the negative side of life. Nothing good comes from negativity. Nothing.

It was after the next ultrasound when we learned that our little girl had Down Syndrome. Okay, we can handle this and we will.  It made no difference to us.  We would love this child unconditionally, just like Frankie and Alyssa.  We shared our news with both families and of course we had the support all around us to carry on.

On May 2, 2005 our lives were turned upside down.  I was 17 weeks pregnant - almost halfway through my pregnancy. It was that day that we learned that our little girl wasn't going to hang on they said. She wasn't going to make it another 21 weeks to full gestation. The terms "hydrocephalous" and "shunt" were tossed around among others that I probably couldn't pronounce or even remember. They said that her heart wasn't forming properly and her little brain was surrounded by water.  They told me that most likely I would either deliver a stillborn baby or if I waited one more week, I would be required to deliver our child and go through the heartbreaking process of delivering a child we would have to bury.

I honestly cannot even go on with the details of what happened in that month.  It hurts too much. At almost 20 weeks pregnant, we lost our little girl.

Instead of mourning,  I bottled up all of my emotions and thoughts and feelings and I don't think we ever really talked about it much. Or again really. I never properly mourned the loss of our child and I'm not sure I even knew how.

Fast forward to October 2006 when I was diagnosed with Breast Cancer.  Almost to the day that our little girl would have been turning 1. Is this the reason why she didn't make it?  Did I already have cancer but didn't know it? I had missed my mammogram the year prior so who really knows.

I had cancer and I went through the treatments and came out in remission on the other side.  I was 41 and we got pregnant again. Twice. It never stuck. We finally let it go. It wasn't meant to be. It wasn't in our story that I believe had already been written for us.

It was fall  2009 after the loss of our mother when my sister shared a book with me written by Echo Bodine entitled "Echos of the Soul". It was her book that made me realize that I should mourn the loss of our child or her "soul" would never be able to live in another body.

Today, it's World Down Syndrome Day - almost 10 years after the loss of our child and for whatever reason, it's the day I have finally mourned.

If you've made it through to the end. Thank You.

Sunday, February 01, 2015

Nicolas Isley it was a pleasure to meet you.

I met this young man somewhere in my social media "cancer" circles.  Nicolas was diagnosed with stomach cancer in August 2013. I met him not long after that and we shared stories - all positive. He loved my new BMW, he told me it was "rad" and that he had one too. He moved from Kansas to LA to work on his dream of working on films and documentaries and he loved music. Once he found out he was sick he decided to turn that diagnosis into a positive thing to help others. He had a vision to start his site to help other patients & survivors in the cancer community to not feel so alone & have someone to reach out to after diagnosis, during treatment and beyond. Nic really got a great start on the project; his own personal videos of his treatments were on You Tube, his website was up & back at home in Kansas they held a successful fundraiser to keep his dream alive. Sadly I just learned that Nic passed away in November. At age 29.  I hope & pray that someone will pick up his project and make it a reality in his memory.  There's plenty of cancer out there but there aren't enough positive people with cancer who also want to share good things and leave behind their legacy for others.

RIP Nicolas Isley
I only knew you a short while but you were quite an inspiration http://www.nicolasisley.com

Monday, January 26, 2015

PET/CT of the torso is negative for hypermetabolic neoplasm

So here's the latest update.  I am elated to report that I am STABLE and there has been NO NEW PROGRESSION!!! 

C'mon, say it with me : No New Progression.  MUSIC to my ears! 

As per my latest PET and CT scan:

NM PET/CT Skull-Thigh SubsntTx
IMPRESSION: PET/CT of the torso is negative for hypermetabolic neoplasm. Innumerable stable sclerotic lesions throughout the bones consistent with previously treated metastases.

The pericardial effusion today is smaller than on
the previous exam and remains small in size. Normal sized spleen and adrenals. Negative for retroperitoneal or pelvic lymphadenopathy. No suspicious pulmonary nodules, and the right pleural effusion present on the previous exam has resolved.  

Innumerable sclerotic bone lesions are seen throughout the visualized skeleton, none of which shows appreciable tracer accumulation or change in size since August scans.

And here's a pretty cool shot that I snagged from my records because I think it's totally mind-blowing to see my insides. Oh and to see this thing attached to my juglar LOL.

Tuesday, December 16, 2014

Rewind the clock

I have to write this fast before I forget why I am here, and what I was doing that prompted me to jump on here at 10pm to write a post. 

Too late.

Oh, right. Thank goodness I had already typed the title of this post so it jolted my memory. It's bad folks. And so bad that I apologize to everyone I talk to for asking the same questions multiple times over. 

I was on FaceBook and I was doing my normal routine which is to annoyingly like everything that my friends or family post. I do like it. And I want them to know that I like it and I am thinking of them. (I digress...) I was flipping through my timeline or whatever it may be called these days, and I saw different people and pictures of things that may have been posted some time ago but are now in the forefront because someone commented on it. Well tonight I realized how much of the past year I have truly missed.  I am not complaining or even whining. I'm literally just coming to the realization right now. Tonight. I saw pictures for what I thought was for the first time but sure enough, there's my little blue "like" button all lit up. I saw it. I liked it. I forgot it. Completely. 

This is just one small part of the short term and long term side effects of chemotherapy (and yes, menopause too to an extent). There are many. I have many and I will post about that topic soon. 

Tuesday, November 25, 2014

Timing is Everything. I am Thankful for....

....the fantastic news that we received today at my Oncology visit with my Doctor.

Let me first take a step back to last week (and then briefly back to Sep & Oct) when it was discovered that the cancer had spread to both of my ovaries.  Doesn't seem so but this is really, really good news because I had those puppies yanked last week. Phew, I really dodged that bullet! The pathology came back after the surgery & the surgeon called to let me know that they had found breast cancer cells in both ovaries. There is no problem and the timing could not have been better. In this case, the old cliche is true. Everything happens for a reason.

I won't harp on September & October but I was mad at my MD. Pissed in fact. We had been seeing him literally every month since June 2013 but all of a sudden hadn't for 2 months. Just yesterday or so I went on one of my entertaining rants, who really only the animals heard,  about how if he wasn't there today for our appointment then I was going to start the search for a new oncologist. We had stuff to talk about; low cancer markers, healing spine tumors (that looked like bigger, growing, tumors to an Internal Med Dr so of course that freaked me out understandably (right??)

I needed to talk to him. Dr. C. Not his nurse. Please, for his sake, show up. For Jeff's sake for having to listen to me all day, show up! For Pete's sake I let them take my ovaries and give them to science so in my mind, the least he could do was show his face today to give me the game plan on what's happening on the go forward. Does this sound like too much to ask by a woman who has been "managing" Stage 4 Breast Cancer for over a year?  Yeah, me either. Cool.

I was completely calm this morning because I was fully expecting the NP, Nurse Practitioner to meet with us. Again. For the 3rd month in a row. See why I'm so mad? I feel like he kicked me to the curb to go play with a more challenging cancer situation, maybe. Cancer jealousy - is that a thing? Anyway, I was all set to get mad all over again when Dr. C. walked in the door with another (young) Doctor in Residence. I looked and Jeff and he looked at me with that look of "Oh thank GOD he's here".

Either way it was a win/win for Jeff since he got to ask a lot of questions and thanks to him and because of that fantastic news I mentioned WAY UP THERE ^ at the beginning of this long winded update, I didn't have to start back on chemo today and if all goes well with my next cancer markers (we should know tomorrow) and the PET scan we'll do shortly, I could possibly be free of thrice monthly chemo treatments for what we pray this time, is a VERY, VERY, VERY, long time.

And THAT my friends and family, is what I am THANKFUL for.

Timing is everything.
Happy Thanksgiving.

Tuesday, August 12, 2014

Drum roll please.....

The test results all came back spectacular. Echo cardiogram showed a reduction in fluid and an increasing EF as they call it in the cardiology world. So what does this mean? It means that they probably won't have to drain the fluid and we'll just watch it every couple of months to be sure it's still heading in the right direction. This is good news.

Next up. CT and PET scans. Results? No visible active cancer except for ONE tumor!!! YES we are thrilled but we are being cautiously optimistic because this was also what we were told in November which put a screeching halt on chemo treatments, live with the horrible side effects of Tamoxifen  only to find out in April that it wasn't working and some of my tumors had gotten larger. Soooo, as good as this sounds, we will stay on track with chemo until there are literally no visible anythings that can get out of control and grow larger again.

Lastly, labs. My cancer markers are the lowest they've been since last year when I was really responding to the chemo.  This is very good news.

Ok I lied. Lastly is the surgery that I will most likely have in the next few months to remove my ovaries. It was somewhat decided that this would be the best thing for me given the hard time I have with the synthetic drugs to replicate this. It will also prevent the cancer from spreading to my ovaries but of course the main reason would be to stop the estrogen which my tumors thrive on.

All in all, I would consider this news an A-. Pretty good I'd say and I'll take it.

So I will leave you with a quick lesson on metastatic cancer.

I know there's a lot of  "You kicked it's ass"or "You'll beat it" going around. It's ok, and I get it and it keeps me motivated for sure.

Because metastatic cancer is the same cancer that you had in the primary site (in my case it was breast cancer in 2006) and the cells decided to spread to other distant areas in my body and take up shop, it is now considered incurable or STAGE 4.  The problem is that once the cells take up shop elsewhere in your body, it's not about "beating it" or "Kicking ass" it's really just about containing the tumors where they are and killing them with chemo or whatever other alternative methods may work. But you will NEVER be cancer free. Scan. Treat. Repeat.  This is the mantra for us folks with metastatic cancer. It's all about getting the tumors under control to be able to live as normal life as you can while not in active treatment.

This is my goal.  I want to get to that place. I'm getting there.

Wednesday, August 06, 2014

Tests, tests and more tests

The way this works is that I have chemo 3 weeks in a row with one week off each month. For every 3 rounds of chemo, I have to meet with Dr. C.  We meet with him on Monday to see how things are going and if the treatment is "working" before I start my August rounds.

Tomorrow I have a long day at Mayo.  It seems that Dr. C. has ordered up a few tests to keep me busy because he probably doesn't think that organizing my house, reading 3 books at once, online shopping and checking my Facebook, twitter and instagram accounts are enough to occupy my day.

Tomorrow begins with an echocardiogram at 8:30am to see how my pericardial effusion is doing. The doctor's report from the last echo showed that the fluid around my heart is actually getting smaller! This was such great news because the last thing I really need is to have a needle stuck into my heart. No thank you, I've got enough going on.

At 9:40 am I get to have a radioactive sucrose pumped through the vein in my foot to prepare my tumors for the PET scan which will light them up like christmas trees if they are still hanging out. They jack me up on this radioactive stuff and then I sit quietly in the dark,  in a small room for an hour waiting for this toxic crap to take over my body. It's kinda relaxing because it's just me and my mind so I think I'll try to meditate. I just learned at Miraval. It's hard.

At 10:40am my PET scan will be started. The test itself only takes a few minutes, it's the prep that takes so long. The actual scan entails laying on a flat bed as it slides you in and out of the machine. Piece of cake. It's the waiting for the results that is so hard and figures it's over a weekend.

Moving along to the chest x-ray at noon -  this is a quick one but they can see different things I guess which is why he wants both.

And lastly, they need to take a shit ton of labs to be able to check my cancer markers, my calcium level and of course all the regular things to be sure that my immune system can handle another treatment and quite honestly it all makes my head spin.

Treating cancer right now for me is a full time job. If I'm not at Mayo getting something poked, infused or scanned, then I'm on the phone trying to get appointments made, changed, prescriptions refilled or lord knows what else.

I'm scared shit of what the results will be. Keep you posted!


Wednesday, July 30, 2014

Lots to catch up on

Where to begin?  I last told you that some of my tumors came back on my spine, I've since found out that they also came back in my abdomen and the one on my lung was a little more visible too. What happened? We probably should have kept treatment going a little longer last year. I should have probably done the cannabis oil program in the exact timeframe it was meant to be.  We're learning so we didn't (more to come later on this)

But we didn't. So here we are. What's next?

I stay the course. I'm still on the same chemo regimen which is Gemzar on Day 1, 8, 15 with one week off.

I get an Xgeva shot for my bones once a month and in place of the tamoxifen, I tried something different to chemically shut down my ovaries so they stop producing estrogen so it doesn't fuel my tumors.  See my cancer is ER (estrogen receptor) positive and my tumors just LOVE estrogen.  This is also part of why they came back. You really need that balance of the chemo along with the blocking of the estrogen in order to tackle these bastards.

A little more on Xgeva:
XGEVA® (denosumab) is an FDA-approved prescription medicine used to prevent serious bone problems in patients with bone metastases from solid tumors.* Serious bone problems are:
  • Broken bones (fractures)
  • Surgery to bone
  • A need for radiation treatments
  • Pressure on the spinal cord (spinal cord compression)

Let's talk about Lupron.  This is the injection that I get once every 3 months to keep those ovaries of mine from pumping estrogen. Well, I gotta say, this stuff sucks. I am having the same side effects that I had on tamoxifen. The hot flashes start the minute I wake up and worsen throughout the day. My bedtime I am normally wrapped in a towel naked just so I don't have to go through 3 changes in the night.  Oh right, let's talk about sleep - about 4-5 nights per week I wake up in what feels like being in a swimming pool in your clothes. Sounds lovely, doesn't it? Well it's horrible and not normal and not how I planned on spending my time sleeping, when I am trying to "heal" my body from this disease.

I had chemo yesterday and advised my nurse Karen to call up to Dr. C. to tell him I didn't want to take it anymore and to start looking around for another option.  He called back and said NO. He wanted me to take the Lupron.  So, we kind of got in a fight about it without even talking. Funny huh? Not really. So I gave in, but under one condition - that I take a lesser dose and not the 3 month shot. They have lesser dosages if you take it monthly. I don't particularly like the idea of having a needle in my ass once a month but if it helps the side effects, then I'm game. Time will tell.....

So that's the traditional medicine side of my life. I have a lot going on with the alternative and complementary side of my care as well.  The more I learn, the more I am sure that this plan to combine both, are what will possibly cure my incurable cancer.

For those that don't know already, I took an early "retirement" from Fairmont Bermuda.  I couldn't fool myself any longer that I could keep up the pace and the travel stresses of the job and I had to draw a line in the sand if I knew I wanted to get better and totally focus 100% on my health.

This was probably one of THE hardest decisions in my life.  I live and breathe Bermuda and the Fairmont family has been part of my life since before they were even Fairmont.  I go way back to the 80s with my hotels, when they were Princess Hotels.  It's been such a part of me and the last 5 years as Director of Leisure Sales have been some of the most challenging but rewarding and fun years of my life.

Since this update is so long as it is, I will hold off on the rest.  I have lots more to share. Exciting studies on MMJ and Cannabis Oil and what it can do for many, many, many, chronic diseases.  I am so fortunate to have been led down this road as I've learned a ton that I believe in my heart can cure cancer.

Hugs and love to all for your everlasting support!

Tuesday, May 06, 2014

Stop and start.....hope it's not the beginning of a trend

I've sat down to write this update so many times but I couldn't bring myself to do it. I'm mad. And I don't want to think about it or deal with any of this anymore. Guess what? I need to get over it.  Wouldn't it be nice to crawl under the blankets and totally hide from reality? Yep, can't do that. I have grown kids to love and watch over, a totally rad husband and animals to look after, a great family and a lot of friends. Oh and a job.

Last time we talked, I told you that my tumors were just about gone and that for the most part, I responded well to the chemo along with my alternative treatments that I have been on. Or so we thought.

Fast forward to March when a heavy chest and trouble breathing landed me back in the ER for a few hours. What they found was the early signs of bronchitis, more fluid around my heart (the pericardial effusion they have been monitoring since last June) and as the ER Doctor announced as if I was totally on board  "And just those multiple lesions on your spine" WHAT??!!! Jeff and I looked at each other in shock. Huh? What lesions? Multiple? How many is that? You mean the ones that were literally almost gone in January?? Yep, those would be the ones in question.  We didn't get em. We didn't crush all the tumors and we stopped chemo in November thinking we did.  Shit. Shit. Shit.

April 17th I started treatment again.  Dr. C. said at first I would maybe need 3 or so treatments.  We saw him yesterday and based on the results from my blood work and looking at my cancer markers and other results, I'm back in active treatment. The good news is that there doesn't seem to be new lesions but we're still trying to annihilate the old ones.

This is what my new routine is all about. I knew it would be like this. Living with metastatic cancer is hard work. It's all about being on your toes and catching these things before they get out out of hand.

I am officially in obliteration mode. And I am pissed. Look out.

Saturday, December 21, 2013

As I write this we are 35,000 feet in the air on our flight back to Boston for the holidays. There's nothing like family to celebrate the season with and especially after the summer we had, dealing with the treatments of my second breast cancer diagnosis.

At our last Doctor appointment at the beginning of November, we learned from my PET scan results that my cancer has responded really well to my treatments. This includes the chemo, hormonal and CBD pills and the concentrated oils program I've been on. We believe that all have worked together to get me to this point. As Dr. C said, my results were dramatic! All great news and it meant that I would finish up my last 3 treatments and my 15th and last treatment was on November 29th.

It's a little scary to be done actually. As odd as it sounds, I'm happy to have my power port still and I call it my lifeline to the Mayo and with it, I feel like I won't be forgotten about! It's a scary thing to be cast out on my own after spending the last 6 months under a watchful eye every week.

What's next? Well I'm back to work. I started back the Monday after my last treatment.  So far so good. I've even already taken my first business trip since being back. I spent a few days in our NY office for a team meeting and holiday dinner with our GMs and our Regional Director. It was so nice to be back at it and was so great to see all of my colleagues who have wished me well for all of these months.

Right after the holidays I'm having another PET scan and a series of labs to see where I am now that I've finished chemo. I'm very anxious to see the results.

I'm feeling fairly well. My fatigue has gotten much better but my hot flashes and night drenchings haven't let up. I'm taking a medication that was prescribed to me "off label" to help with the hot flashes. It has helped a little bit but I'm still not loving this quality of life. I'm trying another med that is also supposed to help so fingers crossed it works.

In the meantime, we're looking forward to a great trip back to Boston! Everything will be put on hold while we enjoy our family and friends and put cancer behind us for a bit!

Merry Christmas and Happy New Year to all!!

Sunday, October 27, 2013

Tamoxifen is a sick joke!

It was decided that Tamoxifen would be the best thing for me to take in addition to the chemo to try to tackle the spine tumors where the chemo wasn't doing the full trick.   I've been on this evil crap for just about a month now and I have to say, I spoke to soon 2 weeks ago when I said that other than a couple more hot flashes than I was already having, it really wasn't so bad.

That was a big fat lie and the full side effects have taken over and I have resorted to sleeping on a beach towel draped from my pillow to my feet to sop up the sweat. Sounds delightful doesn't it? I'm not so sure how I am supposed to live my life like this for the next 5 years! I think I would rather have a tooth pulled with no Novocain.

Other than having to deal with the new side effects of this crap, I'm fairing much better after my chemo treatments which is a blessing. Because of the medical MJ and having come up with a routine each week, the nausea and the vomiting are finally at bay.  It took a while to work out the whole dosing situation and knowing what worked but I'm so grateful that I am able to have the alternative to all of the synthetic drugs that the doctors prescribe hand over fist.

I am happy to report that I am down to barely any pain medication and I'm basically taking a combination of synthetic anti-nausea meds along with my medical MJ which naturally takes the place of many of the others.

I just finished #11 last week and I have another treatment scheduled next Thursday. For November, I will start the month with another PET scan (I haven't had one since June when I was first diagnosed) so we're hoping that the tumors have all either shrunk or have been annihilated enough so that there is "No Evidence of Disease" or in our cancer world NED. Once I am declared NED, then I can stop the chemo and go on maintenance mode and pray the cancer doesn't return anytime soon. I read someone's blog who is also living with Stage IV metastatic breast cancer and she described the cancer as a quiet tenant in her body.  As long as the tenant remained quiet then that was fine, for now. It's how we want it to be so we can live the new normal life with cancer.

Having so much fun I forgot #10!

Clearly I'm joking but I did forget to post my usual chemo picture for #10.

Monday, September 30, 2013

#9 in the books

Last Friday was my 9th treatment and hopefully getting close to being one of my last.

My sister Stephanie and my cousin Jackie flew in for a girl's "Chemo Weekend" and they effed off cancer with me. 

Knocking wood, this was my 3rd consecutive treatment with no barfing and very little nausea. I think I finally have mastered this gallon zip lock bag full of meds along with my MJ to control that. 

Here's a keepsake of our weekend. :)