Tuesday, September 22, 2015

Day 1 of 21. Chemo Monday. A Day in the Life of Metastatic Breast Cancer.

My feed is already alive with Breast Cancer Awareness. We haven't even completed Childhood Cancer Awareness month yet and I am not the only one dreading Pinktober. The awareness of pink. Pink 5 hour energy, vitamins laced with carcinogens, donating about 5 cents per bottle to a breast cancer charity. We call that a self licking ice cream cone. Pink NFL, just ugh.

About 30% of breast cancers metastasize- spread to other parts of the body. There are certain places the obnoxious yet determined breast cancer cells like to get stuck- lungs, bones, liver, brain, but they can go ANYWHERE. Skin, yep. Bottom of a foot, sure why not? One of my kids explained to someone that I had lung cancer.  I have tumors in my lungs- but they are breast cancer tumors. I have brain tumors, but also breast cancer cells- well we think- we didn't actually biopsy them (THAT IS THE ONLY WAY TO KNOW FOR SURE) and well the whole brain surgery thing is pretty intense and knowing for sure didn't change this specific treatment(sometime it does) so we didn't do it.
Living Beyond Breast Cancer is a great org.  www.LBBC.org
Making changes for those living with mets. 

Like childhood cancer, very little funds go towards metastatic breast cancer. Most funds go toward pink campaigns and finding out how to treat these early stage cancers. Not nearly enough goes towards finding out why some metastasize and some don't. Almost all women with metastatic breast cancer DIE from breast cancer or treatment related effects. And it is usually in less than 5 years. I'm in a wonderful group on Facebook that has long term survivors in it and that is amazingly helpful. It is important to know it is possible and kinda how others managed to balance cancering and living.  This is important for how my day went.

So Every 21 days I have chemo. I live in 3 week cycles. I plan things around when I know I will feel ok and try to limit activities on chemo week. Generally I just try to make sure I keep the status quo rolling. Unfortunately I never know when I will feel bad- so sometimes I just have to roll with the punches or sit back and realize- I feel pretty good. I'm gonna try something new this cycle- time allowing. I'm gonna take you along on the 3 week journey. I'm gonna try to post daily about kinda what I feel like- some may be mundane(please, please lets hope for mundane- we LIKE mundane- not nearly enough of that- it's highly underrated. )

A week and a half ago, from Atlanta, the husband texts me- is Monday chemo? He had been gone for 3 weeks(the entire last cycle) home for a week then gone for a week. I wanted normal- and I appreciate Murphy taking the time to jam it down my throat. But for those quick ones counting along at home- that's 5 weeks. Which was kinda a relief because those chemo Mondays sneak up pretty quick. Like every 21 days. I had one more week before I was due back at the pink palace.

That week goes fast. Sunday nights before are a mix of dread and snap yourself out of it kid- enjoy what time you have. This past Sunday we took the boy child out to dinner for his birthday because well- weeknights are hectic. He actually invited 3 friends. To come out to dinner. With us. It also gave Phil and I a chance to visit with his brother and sister and law and their boys- it was a great big family dinner. It was the perfect distraction with my favorite people.

I have issues with insomnia. Whether it's anxiety or chemo or hormone changes or cancer, I don't know. I'm learning my way around it. It's the constant battle of- if I don't get sleep, I'm going to feel worse and then I stress and can't get to sleep because my brain is on, so I read or listen to music until my brain is tired enough to try sleeping again.  So some mornings are difficult. Which is weird because I have always been a morning person. This Monday, I rolled over and it was 6:37. Which is 7 minutes past when we are supposed to be on the road. We try to open up the clinic or else it becomes a day long affair and I have to call in favors to have the girls picked up from school.

I shower, grab a banana, a huge flask of water, and my Phil and we are out the door. Lily's teacher lives down the street and is kind enough to grab the littles on her way to school for me. Kiera helps wrangle the girls. Phillip does not speak unless spoken to in the morning. He inherited that from his dad. The bigs are then on their own for getting to school. We sit in traffic. For an hour. Sometimes more. Sometimes less. but not usually less. If we take the HOV lane- we exit this way to Tripler...

We usually valet, when we are this early though we don't need to. Sometimes we bring Phillip with us for his appointments- we did not have him this past Monday.
We walk inside, to the left and go to Medical Specialties Clinic. It is right next to OB GYN. Which is sometimes hard. But also a reminder of new life. The waiting room is shared with the GI clinic and Infectious Diseases. Whoever decided Hematology/Oncology should share anything with Infectious Disease is not my favorite person. I love the weird window mural. I have no idea what's on the other side, I'm pretty sure it's a wall.  We check in at the desk and wait for Brenda to call me for Vitals. Sometimes Brenda isn't there and Un Suk takes vitals. Brenda and I have a better rapport. I actually look forward to seeing her.
If we are early enough, after the dreaded weighing in and vitals, we mosey down the hall to the chemo bay. When we are lucky we get the corner chair. We are lucky a lot. Early bird gets the corner chair. The corner chair is red. The surrounding walls have handprints from all the chemosabes who have finished chemo. Many sign their names and write thank yous or inspiration. I'm not sure how they handle forever chemo patients like me. I've never asked. It seem unlucky and presumptuous to ask.

Nurse Jacqui or Nurse Cindy then come over and access my port. They are awesome. It rarely hurts anymore. They draw blood from my port and hook me up to a saline drip while we wait for the lab to run my blood. It takes forever.  I apparently have alien blood. One time they actually called and said it came back as non human. We had to draw again. I suddenly became human. I've tried problem solving this- going in early to get blood draws, going to a local lab. It never is more efficient. So we just go and wait. I take a book, we play scrabble, if the signal is ok, I play on the inter webs. Phil usually kisses me and goes to get us coffee, or tea, or whatever sounds good. Pumpkin spice sounded good this time. There was no pumpkin spice. That was sad. But I will live. 
While Phil is procuring coffee, my oncologist usually walks by and stops to chat. There is NO privacy in the Bay, none. Everyone knows everyone's business. Some people pretend to look away, turn up their tvs or sleep. It is what it is. I'm not overly social, but I get very distracted by all the comings and goings. My onc wants to know how I've been. I tell him I'm not sleeping well and it freaks me out and the anxiety is pretty bad. See October is kind of ground zero for these latest adventures. October is 2 years since I've been on chemo. 2 years is also about the average life expectancy of someone with mets. No stress trying to beat that number or anything. So I mention I'm taking more ativan than I like. Oh and I need a new Physical therapy referral- shit now I look totally ADD.  My onc is mellow- which I love.  He asks if I'm seeing anyone - mental health wise. I must look offended because he back pedals and says- I only say this because they might be able to prescribe something more appropriate than I could. It's what they do. He gets me. I don't like taking stuff and I sure as hell don't need to add any appointments to my life, but well I also kinda like sleep and sometimes a healthy means to an end is a good plan. We make a plan for a referral. 

Phil is back with coffee. He also scheduled October appointments. Nurse Cindy checks on me- I ask about a notice I got (EOB-Explanation of Benefits) about generic Kadcyla vs Brand- according to the $$ there is a huge difference and I want to know if she's seen that. She was pretty sure there is no generic Kadcyla but checks for me. She hangs a second bag of fluid while we wait. When I get dehydrated, I feel icky and the chemo dehydrates me.  The chemo I'm on is not cheap. About $9500 per dose. I am worth it. Not sure Tricare thinks so. But I am. We hang out and my onc brings in a new patient. She has the shell shocked look you tend to get when you are told you have cancer. One of the long timers- who is in purple checked matching button down and shorts hugs her on his way in. Nurse Jacqui sits with her- but chemo bay is buzzing- machines are going off- they are perpetually short staffed.  The new patient doesn't know where to look. I get up and go sit next to her. We talk.  She doesn't know if she should call her husband, she didn't expect this, she was just a little tired, but not this.  Call him. Just call him, you aren't alone and he needs to be given the opportunity to help. But the kids, how do I tell the kids and the family...they will worry. But they will also help I tell her and take my advice- accept the help even if you don't want to. We chat, onc comes back- I shimmy back to my seat and give her a modicum of non existent privacy. 

A young man finishes his last chemo. He started a few months ago. He hugs everyone and is out the door. I feel that twinge again. I won't have that moment. New lady waves as she leaves. I feel for her and the whirlwind her life is about to become. One of the old timers rolls in. He predates me by A LOT. He doesn't look well. Well no shit- everyone there is not well- but that's the thing about cancer- it's sneaky. His face is gaunt. He does not feel well. You can tell. And I think I am not there either. And it makes me sad for him and way more introspective than I like to get in the chemo bay so I am relieved when Cindy brings by my magic meds. I really want them to keep working- generic or not. 
My bloodwork is always fine. It's 11:20. We've been here for over 3 hours. That's part of the frustration. BUT it is important to monitor it and we are really lucky to be by Tripler. I don't have to fight over insurance, usually. I don't get bills, usually. And I get good care. There are not a lot of perks of fancy cancer centers, but I'm banking on the perks I so far have been given- good competent care. This bag takes only a half an hour to run. I get two shots after that- one to keep my bones from breaking down and a B12- because I like it.  We pack up and head to the car. 

We usually grab a salad, enjoy a "date lunch" at the kitchen table before Phil runs off to begin the after school drill. I usually nap. Hospitals wear me out. I throw together 20 breakfast burritos for the kids this week so I don't have to hear every morning- what's for breakfast. Or if I do- there is an answer. Phil calls- the girls have student council, we forgot, he's early. Dang. I lay down for just a minute.   I hear the kids tiptoeing around with their complete lack of ability to be quiet. Phil is making dinner.  I get lots of hugs from the kids. That part is great.  Kids kind of drift in and out for dinner. It works out- we get a little time with all of them.  Even though I feel kinda ick, these moments are some of my favorite. The are my no rainbow without the rain kind of moments. 

We watch football and new shows. I am so tired but I know the second I get into bed, the insomnia hits. At 10, we call it good and go to bed. At 10:30 I am back downstairs reading, as to not disturb Phil. He comes and checks on me. I never know when he's flying so I just got in the habit of trying not to disturb him. Plus I get a little achey. Finally I feel sleepy and give sleep another try. This time I sleep. 

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)