October 27, 2015

Home sweet home

Yay! Swedish sent me home again this afternoon.

Infectious Disease Dr said I have 2 bacterial infections - klebsialla (coliform, or a kind of E. coli, which everyone carries) and serratia (water based). Who knows how I got them or why. I'm getting oral antibiotic Levaquin now, once every 24 hours, for five days. Don't click on the links unless you enjoy being grossed out or like medical stuff.

My friend G told me the following: "Serratia marcescens belongs the family Enterobacteriaceae, which includes E.coli and Klebsiella pneumoniae. They are both associated with nosocomial infections (hospital acquired). Serratia in particular is associated with catheter-associated bacteremia."

So it was correct to presume that my PICC line was the cause of these infections. And I have been prone to infections for several years, since my early onset breast cancer in 1999 (I developed toxic shock syndrome in the drain placed after my lumpectomy). This shouldn't have surprised anyone. And yet it did. Even though I've been hospitalized several times over the years for infections.

But I am healthy now and ready to pick up life from where it veered last week. Thank you Swedish Medical Center's phenomenal staff!

October 26, 2015

Update Monday

I am recovering bit by bit.

The weekend was full of antibiotics and friends. Today I learned that I most likely have two different infections. One is coliform, the bacteria that can cause E. coli. You hear about kids eating hamburgers filled with fecal bacteria. But we all harbor some kind of E. coli and it takes just the right thing to trigger your own body's stuff. I think I got that right.

Dr infectious disease named the second infection in the early morning and I can't remember it now. It had something to do with water/blood bacteria.

I've had more IV antibiotics today but if Friday's and Saturday's cultures come back growing the same thing as Thursday's, I can move to an oral antibiotic and go home. So I hope to be here until tomorrow. As you know, nothing is certain when you're inpatient at the hospital.

October 24, 2015

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.

October 15, 2015

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.

October 13, 2015

Metastatic breast cancer awareness day

Yes, out of all of Pinktober and the entire year, they give us ONE DAY. In honor of that one day, I want to quote from my friend Mandi, author of the blog Darn Good Lemonade

About Mandi
My Diagnosis & Treatment
The List

5 Things Not to Say to Someone With Metastatic Breast Cancer
Posted By Mandi on Oct 13, 2015 | 1 Comment

In honor of metastatic breast cancer awareness day (October 13), here are 5 things not to ask someone with metastatic breast cancer:

1. When will you be done with treatment?

The answer is never. We will be in treatment until we die. Even if the magical NED (no evidence of disease) status comes. Once you have stage IV breast cancer you have circulating cancer cells in your bloodstream that have to be kept in check. The average lifespan is 3 years after metastatic diagnosis.

2. I thought breast cancer had a cure?

You will see 99% and 95% cure rate stats floating around. Those stats say that with early stage detection, 95-99% of women will leave past 5 YEARS. Not live forever. read the fine print. I hate this stat. 20% of women with stage IV live past 5 years after diagnosis of stage IV. 5 years past my stage IIB diagnosis is coming up on December 30, 2015. I am not even going to give you stats that involve brain metastasis, we are already pretty upset at my house these days without stirring that pot. Let’s just hope I make it to that 5 year mark, just need 2 more months eh?

3. But you look healthy?

When I won an award that required I be in active treatment for breast cancer, the other woman there with me happened to be early stage and acted fairly upset that I was there with all of my hair (little did she know 5 minutes after shooting the news spot I had to run and get radiation to my spine). It really upset me, I felt like she seemed to think I was faking my illness and it also concerned me that she knew nothing about metastatic breast cancer (spine radiation was one of the worst things I have ever been through by the way). Just because someone doesn’t looks sick on the outside, doesn’t mean they aren’t sick. This goes for many other diseases that are called “invisible illnesses.” I know sometimes people mean well when they point that out, but we don’t exactly want to look sick and it isn’t a gauge on how we are really feeling.

4. But you got the “good cancer?”

HA! All cancer sucks. Yes, some people live longer with some cancers. Some cancers are nearly curable. They all require crappy treatment and side effects. Let’s just cure ALL cancers and I seriously want to hear how cancer in my spine, lungs and brain is the good cancer, mmkay?

5. Men don’t have breasts, they can’t get breast cancer?

Men do get breast cancer. They actually have the inner-workings of a breast that just don’t actually become them because of hormones. That whole XY chromosome thing. I don’t need to teach you biology, but men get breast cancer and they get metastatic breast cancer. Don’t forget them.

For metastatic breast cancer awareness day, I beg you to share a story of someone you love/loved that has been impacted by stage IV breast cancer, share facts, share what it is. Share that we need metastatic breast cancer research. SHARE! <3 Also, if you have metastatic breast cancer – what did I miss? Add in the comments.

Jill's news:
I saw Dr G today and Monday's CT was "not favorable." I have new mets in my liver and lungs.The lung mets have come and gone over the years and are particularly tiny (5 mm each), so I guess I'm not going to worry about them much.

Dr G wants to increase my dose of carboplatin and add Alimta (pemetrexed). Nurse Jacque said these are given once every three weeks, with vitamin B12 for the Alimta. That shot had a very tiny needle. I'll know more once Premera has approved these chemos. Alimta crosses the blood-brain barrier and has low toxicity, so it's very appealing. We also discussed ixabepilone, cytoxan and a new therapy called abemaciclib. 

He'll get me in to see a radiation oncologist to treat my skin mets and enlarged lymph node. Dr G will also try to get me in to see Dr Julie Gralow at UW for a second opinion. She's a widely renowned oncologist who travels around the world and is most likely to know about new research. But since she travels so much, it may be a long time before I get in to see her.