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.

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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.