Radiation Rules!

I’ve been suffering through hip pain for several months now. I try not to complain too much, which I am learning is stupid– it just makes it so that no one takes your pain seriously. Despite that I knew it was bone mets and I know the kind of pain bone mets cause, I was told that “lots of people have hip pain as they get older” and “let’s try physical therapy.” So I sucked it up and went to PT, where after my assessment the therapist shrugged and said there was nothing she could do, exercise and stretching wouldn’t fix bone pain.

So finally, after many emails and calls to my oncologist’s PA, I got my films sent to Dr. Kim in radiation oncology for her to take a look. When I went for my first visit, she said she thought it was referred pain from two spots of cancer on my sacrum. She walked over to me, pressed a spot on my lower back, and BOOM THAT WAS THE PAIN. I almost jumped off the table.

So Dr. Kim, a total rockstar and the most compassionate, kind doctor I’ve ever met, mapped out a plan and started radiating two spots. Within the first 3 treatments, the pain was gone. It is completely gone! I can even walk up stairs without getting a single twinge. It’s amazing and wonderful and as thrilled as I am I can’t help but be a little annoyed that we didn’t get this done 6 months ago.

Radiation therapy is easy and not at all painful. But the process is tedious and you have to go every day, lay half-naked on a table, have them line everything up with the tattoos they give you during planning, get drawn on with markers every day, etc. My SCCA team was great, though, always cheerful and fun. They played my favorite Tom Petty songs and we all sang along as the machine buzzed and rotated around me. They picked a most appropriate song for me, too: “And you don’t know how it feels, to BE ME.” We all sang loud and off key to those last words.

Hawaiian Holiday

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We had such a fun time on Maui. There were happy hours and mai tais and cabanas and palm trees. The resort was beautiful and we took advantage of the grounds and the pool. Eight days was not long enough, I’d like to go back RIGHT NOW. I’m so grateful to have had this time laughing and having fun with friends. We went on a sunset dinner cruise:

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And to the Hyatt Luau:

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And two different days we got cabanas on the beach, which were fabulous:

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And now it’s back to regular life. The morning after I got back I had to go to chemo. The next day, I did all the preparation for my upcoming radiation. Later this week I’ll be starting a 3-4 week course of radiation treatments to my hip area, where I have been having pain for several months. I got my first four tattoos ever. . . little dots that will help them line up the machine each day. I’m hopeful that the rads will work and I’ll be able to stop taking painkillers every night. Another cancer adventure!

The Move

Downsizing has been on my mind for a long time. This little rental house in Bellevue is just a half-mile from my folks, has no stairs, and is the perfect size for me and the pups. The yard is gigantic and the dogs bring in a pound of dirt a day each, easy. Moving from a 3200 square-foot house to a 1200 square-foot house is no easy feat. But the things I love best all fit in this house and I feel really comfortable here. 

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Things are getting organized and I’m settling in. I’m still waiting for my TV to get started up, but I finally have internet now, which is helping me get caught up with things.

England

Our trip was fantastic, we crammed a lot into 10 days. We started in London where we toured the city, rode the Eye, went to the tower, and had a night at the theater and saw The Book of Mormon. It rained quite a bit, but what else would we expect?

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Next we took the train to York. I wish that I could have seen more of the town, but I was down for a day or two. Thankfully, we were staying in the nicest hotel I’ve ever been to, so I slept the day away in a King-sized bed and had heated bathroom floors. Yay. The best part of York was when we hired a driver to drive us through the Moors.

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We drove all the way to Whitbey, a small town on the Northern Sea. It was a gorgeous afternoon in a very pretty town.

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After a few days we took the train back across the country to Bath. My dad was a very good sport as we attended the parade for the annual Jane Austen festival, visited the Jane Austen Center, and even dressed up in period clothing for a few photos. Sadly, there were no sightings of Mr. Darcy.

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Before I knew it, were were back on our way to London on the train, then on the plane home. While I was gone, Tara was dogsitting for me and taking care of the little monsters. While there, she packed my WHOLE HOUSE for moving. So less than 48 hours after getting home, the moving vans arrived an I became an official Eastsider. More on that later…

Stable!

I was very surprised that after my tumor markers have slowly been creeping up slowly over the past several scans, the PET scans show everything has slowed down and we’re calling it stable. So I went ahead and had TDM-1 today and we’ll continue for another 3 months. So now I can focus on my trip to England and then moving to my new home.

We leave tomorrow evening. I am a packing superstar and fit everything into a carry-on roller bag. I’ll check it for flying, but it will be easier to get on and off trains, etc. Ever need help packing light for a trip? Call me to help! This bag has 2 pairs of shoes, 10 pairs of underwear, pajamas, 5 pairs of pants, 2 dresses, and 8 tops. Plus all of my toiletries and such. Yup, I rock!

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Go Gamma, Go!

My 6-week brain MRI follow-up was done last week and the news is all good. The lesion has already shrunk by about a third. Gamma radiation can work for up to six months, so the lesion may still continue to shrink. Small victories, I will take every one of them that comes my way.

Things seem to be moving fast and the time is flying by. I leave next week for our trip to England. After I get back, I’ll be moving to the Eastside to my new little rental home. I’m excited to be in my new place, but not excited about the actual moving part.

Ella has found a wonderful new home with Wendy and Glenn and their two male cats. She is being a bit of a diva and has not made nice with her new kitty friends yet. But I think with time they will all come to be buddies. I am sad not to have her here, but I know it is for the best.

Giving up Griffin will be even more difficult– for me because I am so attached to him, for him because he does not like change at all. I worry so much about what is going to happen to him if I can’t find him a good home. He can move to the new house with me, but that doesn’t really change things long-term. My biggest fear is that I will die and he’ll end up in a shelter. He’s terrible in cages and at the vet, so I think in a shelter environment he will just be scared and hiss, he’ll be even older. . . no one wants to adopt an angry 15-year-old cat. I really want to find a good situation for him now so that I won’t have to worry.

I have a PET/CT this Friday and an oncology appointment next Wednesday. I’ll find out then if I’ll be staying on TDM-1 or moving on to a new plan.

Big Changes Ahead!

I’m looking forward to my trip to England next month and a trip to Hawaii in November. Life is good and I’m moving forward, I want to downsize and simplify my life as much as possible so I can spend my time enjoying trips, family, and friends. So I’ve decided to move out of my big beautiful home into something one-level and more manageable. I’ve found a lovely little rental house in Bellevue just a half-mile from my parent’s house. It has a giant backyard and I’ll be able to walk to lots of things. I’m really excited about this next phase!

The downside is that I need to find a new home for one or both of my cats. This new house is very small and since one cat beats up on the other, moving to a smaller space will make that worse. I also think it’s better to place the cats now, when I am able to play a role in finding them new homes, rather than leaving them behind for my parents to deal with.

So, anyone interested in a 13-year-old cat? Let’s meet them!

ImageElla is a very beautiful, petite calico female who loves everyone and everything. She has never met a cat she doesn’t want to be friends with or a dog she doesn’t want to groom. She has never had a health problem, has always used the litter box, and is just a sweetheart. She would love to live with someone who is home a lot or has other pets to keep her company. She does like to go in the backyard but is fine as an indoor-only cat.

Griffin is a fluffy, opinionated, sensitive orange tabby male, also 13-years-old. I got Griffin as a tiny foster kitten at 4 weeks old and he’s pretty attached. But in his old age he has become a bit of a bully to little Ella. Griffin doesn’t like change, he prefers routine and would probably be best as an only cat. He’s fine around dogs as long as they don’t try to eat him. His favorite thing is to curl up next to my pillow, purr, and suck his thumb. Yes, seriously. It’s adorable. Full disclosure– when Griffin is mad at me, he poops in my bathtub. Could be worse!

I have had both of these cats for 13 years now and it’s hard to imagine life without them. But I want to do what is best for them, and that is to find them great new homes. I would love for them to go to friends or someone I know so that I can stay in touch and know how they are doing.

Can anyone out there help me by providing a home for my furry babies? It would be such a kindness to me if someone could take them in and provide me with peace of mind that they will be loved even after I’m gone.

Catching Up

I never wrote about my Gamma Knife experience, I think because I wanted to forget about it! It was a long day at Harborview but so far I haven’t had many side effects from the radiation except for fatigue. My eyesight is unchanged, which is a huge relief. I have trouble finding the words I want to sometimes, but that could just be from the fatigue, the chemo-brain, etc.

The worst part of Gamma Knife is the metal head frame that they screw into the skull. It’s about as awful as it sounds. 

ImageI am glad it’s over and I hope I never have to do it again. I go in next week for my first follow-up MRI to see if the lesion is responding. It can take up to six months to see changes.

I’ve been sleeping for most of the summer, but have had a few fun trips with friends. One weekend up at Whidbey with my friends Emma, Katie, and their families. So fun!

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Last weekend I met Emma’s family and Shawn’s family at Westport, WA for a beach weekend. The resort was fun for the kids and we had good weather the whole time. 

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I am so lucky to have so many awesome friends!

 

The Gold Cancer Card

At my support group we laugh about when and how we use our “cancer cards.” When I was bald from chemo and obviously a cancer patient, people were super nice to me. They’ll give up their seats, let you cut in line, etc. When we need to say no to something, we play the cancer card. Jokingly, with my friends I will say “how can you not let me pick the movie? I have caaaaaaaancer.”

Well, cancer spreading to your brain is the goddam gold card. It’s a whole other level of “I have cancer.” Everyone else’s responses to my latest cranium invader have shaken me out of the lull I was in. I had gotten used to having metastatic cancer. I knew people who had lived a lot of years. I was still living on my own, had a good quality of life. Living with cancer had become so normal that I had sort of pushed the “terminal” part of it to the back of my thoughts. But now, when I see the fear on people’s faces or hear it in their voices, I can’t ignore the seriousness of this and what it all means.

Just a little clump of cells in my brain has caused tremendous anxiety, fear, anger, and sadness. My oncologist was actually pretty nonchalant about it– “oh, I have patients with brain mets that live for years.” I hope I get to be one of those. . . maybe. The side effects of tumors and radiation in your brain are not pretty. How much of that will I have to go through? I don’t know. I can’t control what is going to happen next. I can make choices about treatments, but that’s about it. I can take some comfort in knowing that I have generous and loving parents that will take care of me no matter what happens next. It’s a burden I wish they did not have to bear, but I can’t control that either.

So, the video. Tom Petty is probably my favorite singer of all time. Still on my bucket list to go see him someday. Since I’ve listened to him all of these years, certain songs resonating at certain periods, I kind of feel like his music is a soundtrack to my life. This song, Wildflowers, is one I listen to most days right now. When I am in the PET scanner or MRI machine and feeling nervous, I repeat the lyrics in my head. When I have a moment of panic or anxiety, I focus on these words and picture some of the best times in my life– hiking with Jackson, Emma and Sassy. Sometimes I can even smell the pine and dirt.

You belong among the wildflowers
You belong in a boat out at sea
Sail away, kill off the hours
You belong somewhere you feel free

Run away, find you a lover
Go away somewhere bright and new
I have seen no other
Who compares with you

You belong among the wildflowers
You belong in a boat out at sea
You belong with your love on your arm
You belong somewhere you feel free

Run away, go find a lover
Run away, let your heart be your guide
You deserve the deepest of cover
You belong in that home by and by

You belong among the wildflowers
You belong somewhere close to me
Far away from your trouble and worry
You belong somewhere you feel free
You belong somewhere you feel free

I Should Have My Head Examined. . .

Oh wait, I did. After months of intense and constant thirst, I finally saw an endocrinologist. He diagnosed me with diabetes insipidus, which is when the pituitary glad doesn’t send out the hormone signals to the kidneys to tell them to regulate hydration. He prescribed me a nasal spray that replaces the hormone, which has brought immediate relief. Of course the question was, why is the pituitary gland damaged?

I was hoping it was from the TDM-1, since the symptoms started at the same time. But, no such luck. Yesterday’s brain MRI shows a lesion in my pituitary gland that is causing the whole pituitary stalk to swell. Brain mets have always been my worst fear. But now the day has come and I guess I have to deal with it.

Chemo typically doesn’t cross the blood-brain barrier. So the treatment will probably be gamma knife radiation to the spot. I’ll find out all of those details after I meet with a radiation oncologist, which should be in the next few days. He or she will come up with a plan, I’m sure. And it’s only one little spot. But it still scares the crap out of me. 

The rest of my mets are fairly stable so we are going to continue with the TDM-1. I don’t know if I’ll be able to stay on the trial now that I have a brain met, but I’m sure I’ll hear about that soon. I can still get TDM-1 even off trial because it’s been approved.

In all of the stories that I hear in groups or on message boards, brain mets are always the beginning of the end. I’m not even sure if I’m all that worried about the end coming sooner than I’d hoped. I’m more afraid of additional brain mets and what that might mean. Will I lost my sight? Be unable to walk? Lose memories? Have my personality change?

Right at this moment, I should focus only on the met I have and not worry about the ones that haven’t appeared yet. The pituitary gland met is small and can be radiated. Unfortunately, the pituitary gland regulates a lot of the body and radiation will likely damage it some, so I will have to take more medications in the future to fix those problems. It’s a lot to take in. 

I’m so sick of all this. And please please please, I know you mean well but PLEASE don’t tell me that I’m a fighter and I’ll beat this. That whole bravery metaphor just burdens the patient. There’s no way for me to “beat this.” I’m doing the best I can to enjoy the time I have left, and the pressure to somehow “win” over cancer is maddening.