Blur

Carrie is in the hospital and I am by her side. She isn't doing well. She is actually quite peaceful and seems comfortable, but the doctor's outlook for her isn't good. We don't know how long she has, but the cancer is taking up too much space in her brain and seems to be slowly shutting down her systems. Her pain seems under control now thanks to the tremendous team-work of her doctors and nurses.

I ended up taking her in on Sunday evening due to an incredibly debilitating headache, and it went rapidly downhill from there, She was admitted and given a room, and we have been here ever since.

Carrie was surrounded by family today, and our three children were able to visit for a good length of time this evening. 

It's been quite a while since I posted an update on Carrie. It has all been a blur; good days, bad days, ups, and downs. We went on a trip to Mt. St. Helens, camped for the 4th, spent Father's Day weekend on San Juan Island, and cheered on Astrid and June at their swim meets,  Carrie's unwavering resolve to make the best of her time on this Earth, spending time with her children, family, and friends is inspiring and should be a lesson to us all. She got it right. This is one amazing women. An amazing mother, wife, daughter, friend, and co-worker. When you read this, light a candle, raise a toast, hug a loved one, and/or give a shout to the skies in honor of my best friend,

That smile. 

"Once in a while you get shown the light in the strangest of places if you look at it right" - Hunter/Garcia

May 2015 Update

"Punish the Pain"- Carrie Ivy

Carrie in Ocean Shores, kicking ass.

Time keeps marching on and Team Carrie continue battling one piece of bad news after another. She had the gamma knife treatment in March and additional radiation on her spine. She had an ommaya port implanted on her head for easy administration of chemo and fluid draws for tests. She had a good  response to gamma knife; all of the lesions either reduced in size or remained stable. The disease in her spine was said to be stable after radiation. All of this has changed. 

We made another trip to the ER at UW a couple weeks ago because of immense headaches, pain in her back, and breathing difficulties about 36 hours after her bi-weekly chemo routine. She felt she was having an asthma attack, but she doesn't have asthma. We spent 8 hours in the ER and were sent home with instructions to follow-up the following Monday. They were never able to give her a reason for her breathing difficulties, but they prescribed her more pain meds, thinking that the profound back pain may have been the cause. 

On May 13th Carrie had an MRI showing approximately eight new lesions in her cerebellum. Also, one of the original brain lesions that had been reduced in size by gamma knife (the largest, most concerning one), had more cancer growing around it. The MRI also revealed that the disease in her lower spine was stable, and unfortunately there is a new spot near her T7 vertabrae that will likely be treated with focused radiation. 

The really bad news here is that the gamma knife  can't be used more than once on the same spot, so the option of zapping the larger lesion is off the table. Also, the doctor said whole-brain radiation is out because it'd be unsafe for Carrie to do have that done again so soon, since she had it in October. 

So, what is next!? Carrie had a genetic test done a while back (Foundation One) to identify any genetic mutations that may lead to treatment alternatives, and it turns out she does have a mutation that in some individual cases has been treated with Vorinastat. So she started taking the chemo (in pill form) last night. She'll take the pills for 5 days on, and 2 days off, for four weeks. After that, she'll have another MRI and consultation with her neurological oncologist to determine if she should continue Vorinastat, or change the course of action, and maybe pair this drug with another chemo drug. 

I don't want to try to fool anyone and say we're not worried, because we are. We're very concerned that Carrie's case is so complex, and there are so many things that could go wrong with the disease advancing in her brain, that, barring any miracles (pray, wish, and plead for miracles), she could very well succumb to this terrible fucking disease. 

Carrie has ongoing difficulties with her speech, and she is growing increasingly agitated by this. We're getting pretty good at filling in the blanks for her as she talks, but for those of you that know Carrie, she'd much rather be able to do it herself. Again, these symptoms ebb and flow, but it doesn't seem to be getting better, though steroids (dexamethsone). She is also experiencing numbness in her face, mostly around her eyes and mouth, on her left side. 

Through all of this, Carrie continues to get a lot done. When she's not resting, she is up doing one project or another. Cancer did not steal Carrie's drive to be productive, that is for sure.

On a personal note, we want to thank EVERYONE for their thoughts, prayers, and positive vibes. We love each and every one of you. Over the past 2 years I have been a bit out of touch with my old, close friends; please know that I think of you all every day and I will connect with you again. I miss you all and hope to spend some sunny days together soon, in fact, the thought of doing that makes me very happy. We are so lucky to have a base of such close friends and family. Please don't hesitate to text, email, or call me; I may not pick up the first time, but I will get back to you. 

I'm still trying to stay fit by cycling. I plan on riding the Seattle-to-Portland (STP) this summer, in one day.  

With the help of my wonderful co-workers and colleagues at Sylvester and other Highline SD schools, I was able to take the rest of the school year off to be with Carrie; to eat breakfast with the whole family and walk the kids to school everyday. The hours your shared with me are invaluable. I love my Sylvester Tomcat Family and look forward to working together again.

A special thanks to all that have brought meals, sent postcards, helped with yard-work, etc... None of your efforts have gone unnoticed. We all thank you from the bottom of our hearts. 

And lastly, a special, special thanks to our family. Andi and Kyle for being ready to help with the kids, seemingly whenever we ask; Paul for introducing me to cycling and just for generally being an awesome Dad. Ty and Curt for on-demand emotional support. I love you all. 

Astrid makes us all smile. 

Astrid is doing great in school. She is a strong reader, she swims like a fish, and she has been writing songs! What a great older sister. 

June- thoughtful, smart, and kind. 

June is also thriving in school. She loves music and drawing. She is strong and really, really fast. She takes after her Mama in that she always thinks about other people, and what they might like. She's makes things for other people all of the time.

West- a handful, a good snuggler, and a surprisingly good dancer. 

West is almost 2 1/2 years old. He was only 2 months old when Carrie was initially diagnosed with breast cancer. He is the sweetest little guy, ever. He has some real genuine dance moves, and loves listening to music. He is a headbanger. He is talking pretty fluently now and is almost completely potty-trained. He is a good sleeper too. He goes on screaming jags here and there, and does the occasional disgusting little boy things (we could already write a book about it), but he is such a good little guy.

Carrie, June, and West in Long Beach, WA

We love you. Thanks again for your ongoing support. 

Extended Hospital Stay

3/19- After 5 days in the hospital, Carrie is HOME! Yay! There is nothing better than giving hugs and kisses to this lovely lady on our home turf. She had her port successfully installed, though they had to shave part of her head again, which was upsetting to her. She's still as beautiful as ever. The reunion continues tonight with meals prepared by Vicky Millspaugh and Gina Randall. And I couldn't end this post without again giving props to Kyle and Andi for helping out big-time, getting the kids to and from school and daycare this past week. I have no idea what I'd do without your support.

Free at last! 

3/18- Still in the hospital and still getting better. The girls and I paid a brief visit to Carrie tonight;she looked and sounded great. At the crack of dawn she'll get prepped for a brain port and hopefully come home later in the day! Thank you all for the kind messages of support, it really means a lot. I wish I could hug all of you at once.

3/17- As of Wednesday, Carrie is still in the hospital. She's been there since Saturday night. She has chemical meningitis, which is an irritation of the membrane surrounding the brain and spine, brought on by the chemotherapy that was delivered via spinal tap. She has strong headaches that seem to be lessening. Her condition is improving. We want her home, but we know she is in really good hands at UW.

With a flower Astrid made with Grandma

Since Carrie had such a strong reaction to the chemotherapy, her doctor is going to cut the dose in half next time. She hopes to get a port installed on Thursday. The port will bypass the need for spinal taps every two weeks.

Westy

I visited Carrie last night and brought the girls along (West, above, stayed with Grandi). She misses them so much and wants desperately to be with them and West. They ask about her all the time and were really excited to see her. They were stoked about the gear they got to wear while in her room, and enthralled by the mechanical bed. Carrie and I honestly didn't know hospital beds could go up so high :)

Future doctors

Please keep Carrie in your thoughts and prayers. I'll keep updates coming.

Love Breck

2015 March Update

(September 2014, photo credit- Lisa Jump)

 

First off, thank you all for the ongoing love and support through this ordeal. Carrie would like all of you to raise both of your middle fingers sky-high for a universal "FUCK YOU CANCER!"

Carrie's situation has gotten a whole lot worse. She now has 8 lesions in her brain. Additionally, scan results confirmed it has traveled again to her spinal fluid. She has new lesions in her lower spine at the nerve endings. She has difficulty articulating. She has numbness in her lower back and left leg, which makes it hard to walk and for West to randomly pounce on her, or for me to accidentally touch her foot on my descent into into bed. All of her symptoms vary from day to day; some are much better than others. Her doctors are not optimistic; they talk in months, rather than years.

It is hard news to take. It's hard to even think about,. It's not fair. We are all shocked, stunned, scared, fucking pissed, sad, sad, sad, and.... still optimistic. There is still a chance she beats this. She still has the best doctors in the business; a cancer treatment navigator that helps seek out the latest treatments and clinical trials available, and the best friends and family anyone could ask for.

Currently(3/15), we're holed up in a room at UW Medical Center because Carrie has been having severe headaches and back pain. Doctors think it is "chemical meningitis" due to the chemotherapy she received on 3/12 for her spine, but are trying to rule out "Flu A" and bacterial meningitis (which would be really really bad, but it's looking less and less likely that is what it is). She's bored out of her mind and continually asks what she could do to keep occupied.

On Thursday, 3/12, she had chemo administered via spinal tap, and ever since then she's had the aforementioned symptoms. Yesterday afternoon she was running a 102 degree fever so we called and they had us go to the ER to check her out. The headaches were intense so they gave her a lots of pain meds. They took a bunch of blood samples and gave her another spinal tap to check for meningitis. They will keep her at UWMC until they rule out bacterial meningitis and Flu A, and until she is no longer in need of IV morphine for the head and backaches.

Prior to this, she had "gamma knife" radiation at Harborview, for the lesions on her brain. They targeted the 8 lesions I mentioned earlier. Gamma knife is targeted radiation; they custom-fit a cage for her head so they zap the right spots, and it lasted for 2.5 hours. Just the cage looked painful; they fixed it to her head with screws! Luckily they gave her some local anesthetic so it didn't hurt; it sure looked uncomfortable though. The largest lesion was right on the cusp of being too big for the gamma knife, but they zapped it.

The day before she was gamma-knifed, she ended a 5-day radiation regimen on her lower spine, in order to shrink the lesions on her nerve endings, as well as to alleviate some problematic symptoms with the numbness and leg pain I mentioned earlier.

From here, Carrie will receive chemo every other week for the foreseeable future to keep the disease in her spine in check. She'll get scans every month for her brain and spine. If more lesions show up in her brain, they'll use the gamma knife procedure again, though they can't zap the same spot twice.

_______
Carrie is obviously upset with current conditions. She wishes she could go for walks and exercise, plan camping trips, play with the kids, hang with friends, work, and do projects around the house/yard. This disease is trying to rob her of those things and she's not giving up, and she knows we're not giving up either.

Astrid(8), June(7), and West (2)are doing ok. The girls are aware of the seriousness of Carrie's situation and are receiving lots of love and attention from all angles. They continue to thrive in, and enjoy school. They read like crazy! They are growing up so fast. They are both caring, thoughtful, and hilarious.

West. Dirty nose and all, on a ride at Disneyland.

West is almost potty trained! He talks more and more everyday, and he absolutely keeps us on our toes, though he is spending less and less time frolicking in toilet water when we're not looking, so that's good. Boys are most definitely another breed, it's all true.  

We went to Disneyland with the kids in February and had a blast, We walked a lot, and Carrie was tired, but we averaged 13 miles a day, so no wonder. We spent one day in Disneyland and another at California Adventure, sandwiched between two air-travel days; we ended our trip by making a quick visit to Huntington Beach to soak up some the California sun.

We're planning on traveling, camping, swimming, fires in the back, and hanging with friends and family as much as humanly possible this Spring and Summer, so there is a lot to look forward to. I would like to see my dudes more often (you know who you are).

If you are interested in helping with meals, there will be a meal sign-up calendar in the future, we'll make sure you know about it.

We currently have plenty of meals, thanks to Vicky and Larry Millspaugh, Kyle and Julie Linman, Stan and Tracy Thesenvitz, Jenny and Ryan Syferd, Leah and Aaron Soenke Ruona, Gina and Scott Randall, Jean and John Sullivan, Andi Ivy, and Kyle and Paul Anderson. Our freezer is absolutely loaded, and we can't thank you all enough. There are so many people to thank and we're so fortunate to have such a strong network of love and support.

I am doing ok. I work out and ride my bike fairly often. I am trying to train for the Seattle to Portland bike ride, and am aiming at doing it in one day. Staying physically and mentally strong is a major focus of mine; it helps me be present and in the moment with Carrie and the kids. Carrie and I still listen to music and seek new bands/artists; a favorite pastime of ours. I love my job at Sylvester MS, and I love the staff and students there.

Lastly, we would like our friends, families, and acquaintances to refrain from discussing Carrie's situation on social media. Messages on this blog, however, are welcome.

Scans and an update

It's been a while since my last post.  Since then, I have completed whole brain radiation (completed in September).  I had a follow up scan in the beginning of November.  The five tumors have significantly shrunk; my neurooncologist remarked this was a beautiful response.  Good!

I started taking cannabis right after I was diagnosed.  At first I took basically CBD oil, but was informed that I needed to consume THC to kill the cancer.  So I changed my regimen, but I ended up puking for about a month.  I'm still monkeying around with the CBD/THC ratio with the hopes that I can ramp up my cannabis dosage and cut out all the nausea and vomiting.

Most days I feel pretty good...if I'm not puking that is :)  My head is pretty screwey sometimes too.  The doctors gave me a shot and pills to turn off my ovaries (just in case the cancer is fed by hormones).  I feel like I'm either hot or freezing all of the time.  Of course that is not helped by the fact that I'm bald.  The radiologist said I have a 50/50 chance of my hair coming back.  Yay.

I will see my oncologist next month, and have a scan scheduled for the new year.  Crossing fingers the tumors will be gone.  And they stay gone (this is a primary challenge for triple negative brain mets).  Fuck I wish this would just go away.  Living in the shadow of this disease SUCKS!!!

All for now

Carrie

Now what?

In February 2013 I was diagnosed with stage 3 breast cancer.  Triple Negative Breast Cancer, a rare and aggressive form.  I had full scans, and the doctors told me that the cancer was only seen in my breast and some armpit lymph nodes.  I did chemo.  It killed it.  I did radiation.  The doctors said that I had an excellent chance of surviving.  Most likely, I'd get this behind me, grow back my hair, and get back to life.

In July/August 2014, I started to notice that I was having a hard time articulating words.  I had no prior issues, and thought maybe I was overtired.  I went to the doctor.  I had extremely high blood pressure.  I was sent to the ER for a CT scan.  The scans revealed that the cancer metastasized to my brain.  There are 5 tumors.  Ahhhhhh fuck.

I started whole brain radiation right away for about 5 weeks,  My doctors are working together to figure out my treatment plan.  Brain tumors are tricky things.  My pet scan did not indicate any other cancer, which is a very good thing.

The doctors haven't given us much specific information regarding my prognosis or what exactly I will expect.  I understand why.  Each case is very different, and I would rather grab onto whatever hope I can extrapolate from the doctors' ambiguous statements.  There may be options down the road to participate in a trial.

When I first started radiation, I was given steroids to reduce the swelling in my brain (caused by the radiation and the tumors themselves). I am out of it, but I've been told this will get better as my brain starts to shrink from the radiation.  My hair is falling out.  It will all fall out, and it will take a while to grow back.  After radiation is completed, I will wait another 4-6 weeks prior to getting another MRI.  The doctors will then determine how I respond to the radiation and how the tumors react.

I am taking cannabis oil (Simpson/Dama Oil).  There is all of this information online about how cannabis kills cancer.  Unfortunately the information is difficult to ascertain or even locate.  I've been taking high CBD (cannaboids) oil several times per day; it's not supposed to make one stoned...I'm working on increasing my dosage.  If you have any experience or know others who have taken the Simpson Oil, I would be interested to know more.

So yeah....it's absolutely amazing how life can just change like that.  I was okay.  I'm not okay now.  What do I do?  I fucking fight.  I fight for Astrid.  I fight for June.  I fight for West.  I fight for my husband and my parents and my family.  I fucking fight for myself.  And I fight for every single day I can get with my kids.

Radiation is Rad!

Not much to report really.  Things are pretty good!  I'm 8 treatments into radiation. Zzzzzt ZAP!  I go every week day until the end of September.  It's a total pain because I have to drive to the hospital on Capitol Hill  (from work in Ballard) but I shouldn't complain.  Man, when I'm done with radiation I'll have been to the hospital about 50 times this year!  I'm continuing to recover from surgery and my range of motion is better.  My body is sore most of the time, purportedly leftovers from the Taxol chemo.  Blah blah blah.

Many thanks to Rachel Coburn and the rest of Team Booya (Carrie's Ta Ta's) for participating in the Alki breast cancer walk last weekend.  It was very nice to see you all, and I feel very loved and supported.

Baby West is eight months old today.  Wow.  He's crawling all over the place, gets into everything, and loves to walk if you hold his hands.  We're in for it!  (in the picture, he's trying to figure out how to wiggle out of Breck's arms and take a swim).

Booya!