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. 

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.

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.

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!

TKO365

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!
Tracy

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.