XRT and gamma knife

Tomorrow is the last day of this round of radiation. It will have been ten days, plus one especially for gamma knife to the brain. Of the four types of radiation treatment, I'll have had three: proton, electron and gamma knife, to five different sites (skin met on scalp, skin met on chest, lymph node on neck, lower right rib and brain).

The gamma knife lasted longer than I recall from my first experience, but of course I insisted on having conscious sedation that time, so I don't remember much. This time I accepted six mg of Ativan instead. The numbing lidocaine injections in their three inch needles (so Rik told me, I didn't see them, thankfully) hurt like the devil, but there's no way around that. At least the pain subsided quickly. I have four more tiny holes on my head, two in front and two in back. Those are covered by hair. They're all healing nicely.

Here are some awful photos. Like my snack and the bubble too? The bubble helps the nurse measure the exact shape of the head. I think the "crown" keeps my head still and must get attached to the gamma knife. They didn't show me that part.

Wearing the bubble

With the "crown" and enjoying second breakfast:
 hot mocha and a croissant 

I sent Rik home once it became clear that the procedure would take hours and he could at least be more productive at home than at the hospital. He didn't want to leave but how awful must it be to sit for so many hours with no involvement in what's going on? And at least he could be with the dogs. Or they with him. Not sure how that worked, exactly.

So, a long day. Dr V gave me a prescription of steroids, tapering slowly down from two mg four times a day over several weeks to none at all. The Decadron disturbs my sleep, but I hope a dose of Ambient will help that tonight. I seem to be fine. That first day afterwards was a bit odd. I think I made many verbal goofs but no one seemed to mind. Much. 

Tomorrow, back to my last session of XRT with the kindest, most respectful technicians since the last time. I gave them some vitamin CH as a small thanks for treating me with such delicacy and caring.

Posing with the face mask for regular radiation

I miss my friends

The other day I learned that another one of my online cancer friends passed away. I had never met her in person but we knew each other for probably close to 8 years on line. She lost most of one leg from cancer and instead of bothering to tell people the medical reason, she would just say 'shark'. As it was much more interesting.

She also became a stand up comedienne and performed at clubs in the Chicago area where she lived. She was very supportive to me when dealing with ups and downs of cancer and was quick to provide supportive words when I needed them.

She has now joined the ever lengthening list of friends who are no longer with us because of cancer. I miss them all, from the first friend who died from cancer, Andy, back in ~1983 to Lorri, just a few days ago.

You can coat cancer in a pretty color and wear boas, hats, shirts, and carry colored bags, and light up buildings. But its no pretty, its not a war, it sucks.

At Swedish

I guess this is really how one "celebrates" breast cancer month: by getting admitted to the hospital.

On Thursday I developed fever and chills around 2 pm during my support group. The great social worker took me over to a nurse for my temperature (high). She called Dr G, and got me a wheelchair ride to the ER.  After a few hours, a chest X-ray, and sharing with both Dr G and the ER doc, I learned I had pneumonia. Rik's colleague gave him a ride from school and eventually we went home around 6 pm.

On Friday I awoke to a call from the ER. They think I have a blood infection, come right back. I picked up Rik from school and we arrived around 10 am. More checks, more drugs, more fever/chills. Lost my lunch several times. Dr G decided to admit me but a room wasn't ready until almost 6 pm.

Now I'm on the 12th floor with a fantastic view of downtown and the waterfront. I've had numerous antibiotics, platelets, and a blood transfusion. No one knows exactly what kind of infection I have. Most likely to be in my PICC line, which has also received its own special antibiotic.

I actually slept last night, no doubt due to fatigue, less sleep the night before and Ambien. God bless sleeping pills. I had fever /chills again  in the middle of the night but they haven't returned yet.

After my shower this afternoon I felt the best I have in days. I have energy but am stuck here on my butt until they decide whether or not to pull my PICC line. It all depends on if the infection clears up. Or as Dr G told the infectious disease doc, better to pull it than to risk her life.

So. Waiting and waiting. Bad food corrected by Rik who brought yummy lunch from Bakery Nouveau and friend C who brought dinner from Ma'ono (fried chicken). Boredom corrected by good buddy G who dropped at just the right time, five minutes after I got out of the shower. More friends coming soon. Spoke to my mom twice.

Are you getting the picture?

PS if you can, please give blood you don't have to tell me if you can or cannot. But it's a good thing to do.

Pinktober means

I have never, not even once in thirteen years, danced with "NED" in my dance with metastatic breast cancer. NED, of course, means no evidence of disease. I started off with bone mets, and once with them, as with a broken bone, there are always leftover reminders. So no, I've never danced with NED.

I've also been overwhelmed by the newest mets-sisters belief that they are dying of mets; that pink is not a cure; and that there is nowhere near enough research on mets. The second and third bits are true: pink isn't a cure and the NCI still funds too little towards any metastatic cancer.

But I have have a hard time grasping the first point. Am I dying from mets? How does that explain 13 years of living with it?

I remind myself that at the very beginning of this dance with advanced cancer I dreamed that my house was too noisy with other people I didn't know. I ran from room to room asking them to be quiet. And when I woke up, I realized that the house was my body and the people were my tumors. I gave my cancer a chance to quiet up and I would give it a home forever, because if I died, my cancer would die.

That's still true after 13 years, and I have to remind myself of it, especially now that I'm involved with younger activists who argue differently. I still want to be involved with them. They are the future of metastatic cancer.

I just am not ready to die.

Think Before You Pink.

The day we died on the Capital.

Awash in Pink.

Story half told

This is the project I couldn't share before today. Go over to Story Half Told and you'll find the stories of five American women living with metastatic breast cancer--  including me!  Or use Instagram or Twitter and  #storyhalftold. I will share more about making the film and being followed by my own paparazzo (singular?).