Our Love

8/18/2015

After an amazingly courageous battle with cancer, we lost Carrie late last week. She was home with hospice care for about 6 weeks, with me as the main caregiver, after her amazing comeback at UW Medical Center in mid-July. The support from every direction was remarkable. There was a constant stream of love pouring over Carrie in her last few weeks. Meals kept coming, and so did friends and family. I can't imagine how anyone could go about this alone; it's hard enough with a high level of support. There are many words of gratitude I need to share with so many of you, and I would much rather save those words for a face-to-face conversation, so I'll wait until then.

Astrid, June, and West have been getting along okay. Having lost my father at the age of 7, I remember how difficult it was, and continues to be, dealing with that loss. They have a strong support system moving forward, and will receive all the love and attention they deserve. They are amazing. They lift my spirits, and I strive to lift theirs. Each one of them share characteristics, physically and behaviorally, with Carrie; and in that I know they will survive. They are so well balanced, practical, smart, funny, talented, and strikingly beautiful, just like their mother.

I can't believe she is gone. She is no longer suffering. She'll be one with the Earth again, just like she wished.

I'm so sorry for all of you who didn't know Carrie. Shit, she was the coolest, smartest, kindest, and most thoughtful person I ever met. I loved her from the first time I saw her, and will love her until the day I join her. I'll remember what she told me about raising our children, and her desires for them. She'll always be here in my heart and mind. She taught me so much. So much.

I am so sorry for Paul and Kyle, Carrie's parents, and the rest of her family. They lost something really special, but gained 37 years of joy along the way. What a gift it has been to be a part of the family. I may have lost my Father in 1984, but I gained a Father and a beautiful Mother on December 28, 2002, along with the extended family. I love all of you, and the ones we have lost along the way. I learned something from each and every one of you.

Carrie lit up any room she walked into. She'd kick me in the shin for saying this, but she was the party; she was all that was happening when she was around. She was something special. Everyone I talk to tells me something they either learned from Carrie, or advice they'd taken from her. She was wise beyond her years, she was compassionate and empathetic, and she could party and/or drop the perfect joke at the drop of a dime.

Carrie set the world on fire with her determination, frankness, and grit; and she'd be happy to know that we live by her example; never take the moment for granted; always ask questions; and never take shit from anyone. This is your life.

Carrie at the Engle Wedding, July 2010

I love you, Carrie Anderson Ivy.

180

Carrie at a recent swim meet 

Well, here we are on Thursday. We have had quite a wild ride here at UWMC. As you know, Carrie was admitted on Sunday/early Monday due to an excruciating headache. She became increasingly non-verbal throughout that morning and became completely non-verbal and seemed to sleep for three nights. There were many visitors on Tuesday, and they gathered around Carrie and told story after story of their experiences with Carrie. It was amazing. Every once in a while, Carrie would crack a smile, but said nothing. She opened her eyes, but didn't seem to be looking at anything in particular.

Our children, my Mom,  and Carrie's Parents have been regulars in the room. It's so nice to have the kids around, though it gets hectic pretty quick when they're around. They are so full of energy and we love them so much. They are such resilient little beings. The girls continued to attend swim practice and swim meets. They have been kicking tons of tail and breaking their own personal records on a regular basis. I am so proud of them. I want to thank my Mother, Andrea Ivy, as well as Salley Anderson, for being there with Astrid and June, and sometimes West at the practices and meets. Kyle (Carrie's Mom) has been an extraordinary help with our 2.5 year old, West. He can be quite, how do I say this.... spirited at times, especially when tired, and she hangs with him and has it under control, even though he spends most of his time with no pants on :)

Westy Boy visiting Mama at UWMC

Astrid and June at a recent swim meet

Back to the story...
The team of doctors and palliative care workers told us earlier Tuesday morning that Carrie would likely never talk again, and that she would slowly slip away.

Later Tuesday night after everyone left, once of the nurses asked Carrie if it was ok if he turned her on her side, and she responded, "yes". That was the first time in days she said a word, which was definitely something to celebrate. This confirmed that she actually could hear what was going on around her. I thought that was great. Also that night, right before I went to bed in the cot next to her hospital bed, I went in for a the millionth kiss, and she tried to punch me, or push my face away. Dejected, I plopped down in my bed and went to sleep.

Wednesday morning, I woke up, gave Carrie a kiss, and she looked at me and said, "what are you doing?"! What am I doing? What was she doing? Ha. She was talking! Ho-ly shit. I called Carrie;s parents right away and told them the news and they were here as quickly as they could, given that heinous I-5 traffic. I also told my Mom to bring the kids up ASAP instead of taking them to swim practice. They were all here and we enjoyed the sound of Carrie for remainder of the day, along with many, many others that were able to come visit.

We spent Wednesday celebrating with friends and family; rehashing the week's events, unable to believe what we were witnessing. There were lots of tears, hugs, and kisses, but mostly we filled the hospital belly laughs and joy. I thought we were going to get kicked out, personally, but the nurses said it wasn't a problem. She ate her first meal that night; the first since the lunch we had at Spud's on Alki the Sunday before. Pretty amazing.

On Thursday, Carrie was still doing great, though she does still get spikes in pain and she has been on a continues IV drip of pain meds. We received news today that if everything continues to go well, Carrie will go home on Saturday! Hospice will be set up at our house and Carrie will be surrounded by our children in the comfort of her own home. So nice. That's it for now. I am certainly leaving out many details, but I am tired and going to bed.

Thanks again to you ALL. There are many factors at play in Carrie's miraculous comeback, and I am convinced that your continuous prayers and positive emission of energy have a lot to do with it. It could have also had something to do with Carrie wanting to explain her electric purple (magenta?) hair color. Her explanation of why she colored her hair? "Because I do whatever the f*&k I want."

It's all true.

Love Breck

(not spell checked or edited for grammar, so shutty)

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