Wednesday, January 28, 2015

PET Scan Results- the Adventure continues!

I got THE call.  The call you don't want after your PET scan. No news is good news. There is news.

The first thought.


Second thought. 


I cut to the chase- How bad is it?  

It's not horrible but we have progression and we need to discuss options. I can tell you right now what I'll recommend. 

Yes Please. 

So what we know... the short story is I have some new growth and we have to switch up our chemo to get the cancer to knock off it's nonsense. Metastatic Breast Cancer is a chasing game. We treat, we hope it works, we rescan and hope it's still working. Most chemos for mets last for a short time before the crazy cancer misbehaves and works it's way out of time-out. Our job is to be attentive and keep it in time out for as long as possible. My cancer needs to be put back in time out. 

15 months ago I had lots of round spots in my lungs, bones(femur, iliac, spine, arm). In March- most of those spots had disappeared(major yay!)- except for a shadow on my femur. That is called complete response- all those misbehaving cancer patches- had the chemo and went into time out. So we continued because it worked. 

My cough is back, which is a daily reminder that I am not as healthy as I pretend to be. I do feel pretty ok. Which I am really grateful for. Although there is still activity in my lungs of cancer cells- the old spots are pretty stable. That is good news. Unfortunately there is a new spot in my hilum(middle of the chest- part of the lungs) that's bigger than I'd like, a bunch of new bone spots-in new locations- and the right femur spot of old is pretty angry. On top of that there is a little adrenal spot- which adds yet another organ affected- not good- but also reminds me of Lily kayda's adrenocortical carcinoma and freaks me out. Breast cancer can metastasize to the adrenals- but it could also be new tumor. So that is something we will have to watch carefully and evaluate. For now we treat it like a met- because it is small. 

When new spots grow- there has to be a change in plan. If what you are on is working- there should be no new spots. Mind you the stress of the past month's brain mets- physically and emotionally- probably are weighing heavily on my body. But we have options. We hoped for stable- but we deal with what we have. 

We need to throw some more at the hormoniness of these tumors- they are hormone positive meaning they love estrogen and progesterone -which women's bodies make. I got rid of the organs this summer- but the amazing body has many ways to do things- like creating estrogen from other molecules. There are pills that I can take daily that will stop this conversion- to make sure we have less estrogen feeding the cancer cells. Of course the down side to this is some crummy side effects and bone weakness- which is already a problem due to the mets. But looking at alternatives- you have to get rid of the biggest threats. So I will be starting an Aromatase Inhibitor(AI) called Arimidex.  It's a pretty standard hormonal treatment for breast cancer after the ovaries are shut off(post menopausal).  SO plus side- no extra trips for infusions with this med. 

Since I have new bone issues and will be adding the AI- I keep taking the Xgeva- which helps my bones hold on to calcium and prevent breaks from the weak spots. That is a shot and will still be every 3 weeks. 

Then we have to address the new growths. We will be trying a chemo called Kadcyla(TDM-1- which Phil has taken to calling Touchdown Molecule 1). It is a drug we seriously considered doing first- but  recommended that we keep it in our back pocket and give the other chemo a chance. It's a buying time proposition and we try and eek out each step. We got 15 months out of my cocktail- I would have liked a bit more but am so grateful for this past year- ups and downs and seeing new milestones for my kids and the together time and reconnecting with family and friends. There was a time years ago where there were not these options. I hope for my children's sake and all other fighters out there- there will be even more down the road. 

Kadcyla is essentially Herceptin- with the chemo attached to it that finds the Her2 receptors and latches on to the cancer cells. It is very directed chemo and they have seen good results. It will probably have a similar side effect profile to what I was on before- but we will see.  My doc called it the iPhone 7 of herceptin- kinda wished he had shot for iPhone 8- the 6 was released much too soon. But it will be an infusion every 3 weeks- very similar to what we have been doing. The nurse ordered it today- so we will wait to see if it comes in on time for me to keep on my Monday schedule. 

So the take away is that we have continued hurdles- but I remember how bad it felt to see all those tumors light up over a year ago and here we are today.  We take it a day at a time and live our best life and try to find as much love, comfort and fun along the way. I am very thankful for all the positive energy, love, words, juju, prayers and offers.  It truly makes a difference, for all of us here. I also want to say- if you feel like calling -call- or text or drop a message or a card.  Please don't be afraid to  reach out. I know it's hard to know the right thing to say- because sometimes there isn't anything that can help- but I can tell you how much it means to just even hear I'm thinking about you- and it gives me a chance to respond and let you know that I'm thinking about you too. 

And a HUGE HUGE Thank you for the Team Mallory Support- my friend Gina was kind enough to start the fund up again for a 3rd SALE!  If you are interested in grabbing this fantastically designed Tee by Hope Friedman - it will be up until February 8. There's a new ladies fit too! We've been using the proceeds to have the housecleaned every 2 weeks and tip the Valet guys at Tripler generously. Oh the difference it makes!! I still am completely in awe that we have a t-shirt- but adore seeing pictures of all of our friends sporting Team Mallory. I'm hoping to get to tell you about the gamma knife experience soon- I'm still waiting on my superpower to show my good friend Trish says- I wish my super power wasn't sprouting tumors! 

TEAM Mallory Until FEB. 8

Wednesday, January 21, 2015

Pulling for Supermom

So here's the plan. Yesterday I had a super duper High Definition MRI of my brain.

We were referred outside of Tripler for the scan- which in all honesty was fine with me. It's nice to see how the other half lives from time to time.

We walk in- Koa wood decor- friendly receptionist- chilled water available for consumption. The familiar hum and rattle of the MRI machines next door permeate the check in process. The seats have cushions. There are not 1 but 2 TV's so everyone waiting has a view.  I get called back to my secondary waiting room- which is slightly smaller than my living room and I get handed a remote control to watch TV.  The plants and surroundings are neither sterile nor terrifying. Before I can even find something to watch the technicians are ready for me and lead me to the machine with headphone so I can have music to listen to since they noticed I marked that I am claustrophobic. Isn't that my luck - little waiting in the room that I wouldn't mind waiting in.

Some of the problem is that I was to have a PET scan last week. Well due to scheduling gymnastics associated with having brain tumors- it was cancelled and not rescheduled and there was a mix up. As it turns out- I came down with a nasty cold that afternoon and it is just as well that I didn't have to chase down guesses or repeat scans to determine if spots were cold or cancer.  I've had colds for scans before and nothing quite adds to the claustrophobic effect like thick mucus dangling down your throat and an MRI tech yelling at you to hold still. Yet the these techs handed me a special cough drop from Chinatown and I'll be darned if that thing didn't work. An hour later I was done- neither suffocated or coughing.

As we left the MRI suite, we noshed on a rather delightful salad from the coffee shop in the foyer of the building.

The MRI is important because is it going to help the surgeon and the radiation oncologist pinpoint the exact coordinates of my misbehaving tumors.  MRI gives the best resolution of swelling vs tumor and all the various structures in the brain.
Jen's toomah

Tomorrow, I go for gamma knife. There are no actual knives involved- it is not surgery. It is pinpointed radiation.  Around noon- the neurosurgeon will screw(yes- screw- and it is as terrifying as it sounds) a frame to my head. As terrifying as that is- the reason is to help zero in on the tumors and to prevent movement.  Then I will have a CT scan. 

After the CT scan- I will get to wait with Phil and my new frakensteinian head piece- while the doctors plot and plan the coordinates for treatment. They look at the MRI and CT and tell the computer exactly where my tumors are.  From there it is pretty much a software driven deal. When they are ready for me- they put me in the colander (which I think they technically call Collimeter) but potato/potato- see the round thing with holes in the picture below? That thing. And this is where the anti anxiety meds are worth their weight in gold. 

I then get pushed into the massive radiation machine which shoots tons of radioactive beams that individually aren't too scary yet when they converge in the right spot- ZAP! Then we hope hope hope that :
this works.
there are few side effects. 
I don't freak out. 

Afterwards they put corks in the screw holes and I am bummed it's not october cuz I am the bride o Frankenstein.  Kidding. Apparently they put bandaids on the holes- which are just flesh wounds- but we all know how much the scalp likes to bleed. And we go home and hope for no complications. 

And hope the tumor dies. 
and hope my brain does not swell. 
and hope for minimal side effects. 

When I was 17 my dad had a brain tumor. 3 years before my brother did. Brain tumors- I am familiar with them and they scare the shit out of me. They can take away who you are, what you can do and your future. They are angry little bastards. Mine just happen to originate from my breast, we think- so here's to hoping they are boobs. The only way to know for sure would be to biopsy- and biopsying brains is pretty tricky and if you are going to biopsy you might as well do surgery. Gamma knife radiation is "less invasive". It is the best option for the situation. It would be the best option no matter the tumor type. 

I remember vividly sitting in a cold room, very much like the MRI waiting room at Tripler- listening to the humming and bustling of nuclear medicine- trying to read Anna Karenina for IB English and failing miserably.   To say that this process brings back a lot of hard memories is an understatement. 

Yet I remember how far we've come since then. How far I've come since then and I know- what will be, will be. I have more to do and am confident this is yet another step on the path I am supposed to be on. For years I had been terrified of chemo because it almost killed my brother. Yet it worked for me. For years I have hated radiation for making my dad's tumor angry. Yet here I am facing down yet another fear. 

It's tough because with exception of a nasty week of vertigo- I feel pretty OK. I keep being told this procedure is tolerated very well and I've read reports that it has been successful in LFS patients. Of course I tolerate a lot of things that I feel are bullshit- so this might be more of the same. Worst case scenario- it doesn't work, I have side effects, swelling and end up having to have surgery to control swelling. Best case scenario- the tumor dies and I can control things with my mind. 

Tolerates well= go home and have a headache and maybe some nausea. 
not too bad a deal if it works. I could have residual damage- hearing loss, vision loss, and others tumors could pop up. But we are going to hope for the best and pull for Supermom!

SO pull out your Team Mallory Shirts or your MUTANT tees if you got em- we need some extra good juju tomorrow.  Do something tomorrow you've been wanting to do for awhile but haven't or just do something fun- in your shirt and send me a pic! Many hugs from Paradise. 

Friday, January 16, 2015

What a Trip!

Its hard not to feel like every time we plan a trip, something goes drastically wrong. But then again, if I step back and look at it- things do happen for a reason. We had a wonderful week in California and by far the best part was all the love we received from family and friends who jumped on planes or in cars and made the trek to come spend just a bit of time with our chaos.

It did my soul so much good. Living on an island makes us pretty inaccessible at times- so our trip gave us the much needed reprieve from island fever and the whirlwind of scheduling that swirled around us. It gave us time to just be us and reminded me of how important people are in my life.

We took the kids to play in snow and build a snowman.

A very tiny snowman.

Despite a cold and the cold- Bella still had fun- even taking a nap on the side of the slope. 

The littles were content playing while the bigs enjoyed snowboarding at Mt Baldy. yep we chose the spot exclusively because of it's name. 

But most importantly we got to visit with our friends the McCormick's- the type of friends you can fall back into conversation with like no time has passed and thoroughly enjoy just hanging around with. 

The next day- our friends since high school Rob and Ang brought their 4 beautiful kids to hang with us in Newport Beach. I loved seeing our past and present connect and form these new relationships based on our friendships from long ago. 
We laughed and learned there are people who will refuse to take your picture for religious reasons but  that didn't stop us. Again my heart was happy.

We then headed to the happiest place- not because of a mouse- but because of family. We got to spend time with grandma and had the amazing bonus of some cousin time!!

There was ice skating at a rink in Downtown Disney- so they got to check off another winter event!
My mom got to see that I was in fact OK!
It IS a small world- Best group pic ever!
The minions. 

And finally, ended the trip with an amazing dinner with new friends. 

Back to Chemo!

Thursday, January 1, 2015

Facing it Head on

A few months ago I took the girls to their open house at school. As we sat in Lily's class the room, everything started spinning. This had been a side effect of chemo- if I overdid it, sometimes I'd get dizzy.  But this was different. As we walked out the door I felt like I was falling over.  I grabbed onto Lily and she steered me to the car. I sat there getting my bearings and finally called my neighbor to come pick us up.

Last month I woke up and felt a similar dizziness. I threw in a load of laundry and within an hour the room was spinning. I laid on the couch- if I held really really still it was almost bearable but the nausea grew. Shortly I was vomiting. It became an ER trip and I felt too horrible to even panic when they refused to give me an MRI and did a CT instead. The CT didn't show a problem- so I was given fluids, dramamine and sent on my way. It took a week before I felt like the dizziness wasn't going to pop up. My mom suffers from vertigo, so I really just chalked it up to another win in the genetic lottery for Jen.

At my next chemo, we talked with my onc who said a brain MRI was probably a good idea. Then I ended up with the flu. Fever, chills, sniffles, overall misery. By the time I felt better it was time for chemo again.  I figured I was in trouble for not getting an MRI when the nurse took it upon herself to schedule it for me. The appt was 2 days later,  Christmas Eve.

Perhaps forces aligned to allow us a peaceful, happy Christmas. Phil and I are horrible with surprises and secrets. Both of us have been really feeling the weight of permanent chemo and it had been a rough couple of months, so we decided to plan a family trip and surprise the kids with it at Christmas.  Since I don't fly well- it had to be close and the closest stop is California. So California it was. I bought each kid a cold weather outfit and printed out a card that let them know we were going to Disneyland and to play in snow- I wrapped them up in boxes and put them under the tree. The excitement when they opened the presents was totally worth it.  But the next week was going to be one of the toughest.

On Friday I got a call from a radiation oncologist. Unfortunately I have 2 tumors on my cerebellum, the part of the brain that controls balance. So we now know the cause of the vertigo. My cancer is misbehaving.  We can't know for sure if it is breast cancer metastases unless we do surgery and that could have some pretty big repercussions- but the docs feel pretty sure it is breast cancer.  This week we met with different radiation oncologists, got to see the pictures. Never a good feeling to see a grape size spot in your nugget.  Neurosurgery was consulted and pretty much decided that surgery is too risky.  The recommendation is gamma knife radiation.  We got to see parts of Tripler we'd rather have not visited. We also got to see the Cancer Center of Hawaii- since they have the fancy gamma knife machine. I really like the rad onc we saw there, she even cited an article about gamma knife results in patients with LFS. As much as I dislike the idea of radiation and worry whether or not it will work in my already mutant cells- it seems to be the best option at the moment.  But no plan is set yet. Friends called in favors for me for second and third opinions. My brother in law graciously consulted his bosses at Mayo Clinic. I've read papers. I've lost sleep. Rehashed symptoms in my head- pun intended.

Today is the first day of a new year with a lot of new unknowns. I know this- I love my family and friends dearly.  We will need some support in the next few months, I just don't know what or how yet. We're not sure what's ahead but we will keep facing it one step at a time and living along the way. So today we leave to try and relax(ha!) and gear up for some pretty big hurdles. But I've heard some positive things from some respected docs and we will face it head on.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)