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. 

Hair Trouble with Tribbles

Chemo does a lot of fun things to your body. One of THE most dreaded is hair loss. I've watched this side effect wreak it's physical and emotional havoc on many many loved ones and friends. It sucks. It sucks when you walk into walmart with a bald 4 year old and the looks of pity, the looks of despair, the looks of saddness.  Even more so are the looks from your loved ones, their despair and saddness when the person losing the hair- is you.

I was not afraid to lose my hair. I know women who have turned down chemo for no more than that reason alone. It's hair- it grows back.  All it needs is the right environment and time. Sometimes in order to get a plant to bloom it's best flowers- you have to dead head it. It then is forced to channel all of it's energy into growing roots instead of the pretty but temporary blooms. So although for a time the plant may be bare- once it's roots have latched on- the new flowers will be better, bigger and healthier.  Chemo is a form of dead heading.

It's not fun. The hair loss doesn't hurt, but my scalp was tender- like a sunburn. Hair usually starts thinning 3 weeks after chemo with any drug that causes hair loss. Last week mine started coming out in bunches. Bella would grab handfuls every time she walked by.  Gifted some crappy genes- I also got good, thick hair genes.

I took a shower and there was a tribble in the bottom of the tub. It was hideous. It was an obsessive compulsive nightmare. Anyone who's ever lived around girls- knows the shower drain issue is a huge point of contention. We shed.  The mass evacuation started.  The kids were having a tough time dealing, so I offered to let them cut it. Bella was the only one excited. Of course- the day of my first chemo she expected my hair to be gone, even adults have a tough time with the process- I had to explain to her it would take time. I knew one thing- I didn't want to battle it. It was going to happen and I wasn't gonna let it linger miserably with Donald Trump denial.

So after avoiding showers and watching the wisps of hair spiral around the bathroom while trying to dry it, I had enough. My friend Lani found a salon here, Salon808 whose owner Henry donates and styles wigs for cancer patients. She hesitated- the catch is they need to shave your head so the wig will fit right. No problem- I had already promised Bella she could do that. I asked her to call and  make an appointment and that would be our deadline. Thursday it was. The problem was getting Phil and Phillip and Lily on board. My friend Debbie was on call to share in the night and was kind enough to take pictures-all photos from here on out are with heartfelt thanks to Debbie Leanne who continues to bless me with her friendship, quick wit and photography skills despite throwing her into cramped spaces with poor lighting conditions. But there was wine...of course she brought that too.

Phil's faced much adversity in his life and most people have no idea. His compassion and no nonsense attitude was cultivated out of years of necessity. I hate that this cancer bullshit is bullshit and in anyway a part of his life. I could not and would not be the person I am without him beside me and I know he feels the same way. The hair is symbolic of the sickness and how much it is threatening our happily ever after. I get that. But I am a picker- I rip scabs right off and this one had to go. The deadline was key- for as much as he dreaded being a part of this major moment, he would never ever miss it. Although he did drag his feet plenty.

Debbie beat him to the house with treats and appropriately themed wine! Like I said- she's a keeper.

I texted my sister in law. Another amazing and selfless soul- to be at our beck and call while caring for 2 babies and still trying to get settled while her husband travels. But I knew my nephews were a necessary part of the distraction for both Phil and Phillip. Hopefully they won't feel compelled to cut off everyone's hair from here on out.

Lily requested to cut my ponytail off. If we had waited a day or two longer- there wouldn't have been one! Clumps of hair pulled out every time she tried to grab on. Someday I will read to her about Sisyphus and she will get it. She probably would anyhow.

Kiera wanted to stylistically cut my hair. A wedgy bob like hers.  She took her time and actually proved to be fairly skillful. I've had worse haircuts at supercuts.

Bella couldn't wait to shave it off, but kept herself busy collecting every bit of hair as it fell.

Well- this fuzzy picture was mine...won't let Debbie take the fall for this one.....

Phillip wanted no part of it. We coerced him into cutting a piece. I think I've shaved leg hairs that were longer than what he managed.















We tried a Miley Cyrus do...

And a flat top.....

And finally the full monty.....which is when it hit Lily.

But this is part of the process. I want my kids to know I face it head on. It's Ok if they want to do something different, but they are a part of me and therefore a huge part of this. Hair is temporary. I didn't break. Was it hard- sure. I know it was a zillion times harder on them.  Do I want to keep this look- not really. But without boobs and without hair- sometimes people are forced to look you in the eyes or look away- then you can really find out who needs to be in your life without all the pretenses. It's a lesson I would have much rather taught my kids over hot cocoa and a broken heart or a friendly spat, but you play with the cards you are dealt. And the ones that matter will make the journey with you, even if it's uncomfortable.

And in the end you also find out Bella never really wanted to shave your head- she just wanted a Tribble.

Chemo Cocktails

Weeks ago Phil and I, our genetic counselor and an oncologist walked into a bar. Actually, we sat in a tiny exam room, huddled around the paper covered table while the doctor drew flow charts and game plans.  Not football, not Sorry or Risk, but the chemo games.

I have a tough time with a lot of the premises of cancer treatments. Most cancer treatments are like an amazing race- they try to kill off cancer cells faster than normal cells. Good in theory- but leaves you with a lot of unpleasant side effects- both short and long term. Many cancer treatments purposely cause damage to cells(radiation is a good example) which then creates a chain reaction of events to get the body to recognize and get rid of the bad cells.  Unfortunately a lot of these need the tumor suppressing super power of p53 that us mutants seem to lack- hence many chemos and radiation are unreliable for us. Sometimes they even make tumors grow faster in mutants. So not only do I need to consider the great big gamble of which chemo- I also have to take into consideration how it works.

So there we are- saddled up to the paper lined exam table bar- trying to chart a course to get me through this predicament. I am not your standard patient. I don't follow the one size fits all approach and they sure as heck don't fit me. So most women who have metastatic breast cancer have tried other chemo cocktails. I chose against chemo last time. It was recommended. BUT my logic was this- there are certain limits to the amount of chemo a body can handle.  I told former oncologist that I didn't doubt that we'd have future opportunities to chemo-ify me- my gut said not right now. We had clean margins, and no lymph nodes were positive - so I wanted to operate on the assumption that we got it all. That is a risk you take with cancer. You can't see the cells- they could be floating around. I weighed my options and I wasn't ready to do the chemo drill without a great big glittery flag of a reason. I now have that reason. And that reason still didn't make the decision any easier.

New Oncologist was given the brief on me- I make the calls. He doesn't even offer his opinion until asked- which I do a lot. His answers are honest and frank. That's how I roll. Two weeks after our cancer cocktail discussion, he calls to check on me. Not trying to rush me- but he knows I'm getting ready to leave town and wanted to make sure we had a plan in place- you know to make sure the right meds were ordered and ready.  I asked him to call an NIH doc for me to get another opinion. Actually a mutant sister absolutely insisted and knowing that I was going to be seeing her in a week's time and she would make good on threats- I needed to follow up. Never mind the calls I put in to family and friend docs as well as a few connections I've made over the years. I had every mutant I trust pooling experiences and research into a nice neat package and they even took an official vote on which treatment they would choose for me. All answers were the same. Bases were covered. The decision was taking shape. 

There are a few approaches to treating metastatic breast cancer. I know too much. I researched metastatic breast cancer when I was first diagnosed . I calculated the risk and effectiveness of treatments.The numbers suck. You can't look at those numbers. They suck. So day after day- I would try to find the magic answer- in some paper- any research article- obscure or recent that would be the best for me. I couldn't find it. I began to envy the patients who just show up and follow the protocol given by their doctor. But I also know that the way the system works is geared to the masses. My blood pressure would sky rocket, making me breathe harder and that would stir up the glitter wich was counter productive. I would steal time to take walks- I always think better when I walk. I downloaded some meditation cds one of my other favorite mutants sent. So as I walked and Bernie Siegal guided my thoughts- he also made some really good points. The one I needed to hear was- a seed that is paved over does not stop to consult scientific literature on survival probability of seeds that are paved over. It merely finds a way to survive. It was reminiscent of the period after Lily's diagnosis-me attached to the computer searching for answers that didn't exist until a good friend said- stop looking for the answer and go be a mom.  So there was my answer. I had to believe I was going to survive and that would guide the path to survival. The answer was definitely a cocktail.  Unfortunately Sam Adams Octoberfest wasn't going to fix this one.

Once I committed to that- I had to focus on the best way to achieving that goal. And somehow that puts me back at square one.  So I called and emailed and had a few heart to hearts with favorite mutants. And between our collective hearts and minds- I knew that I had exhausted the information- I had everything I needed- I just needed to make the decision. There was no epiphany, it ended up being that call from new oncologist that made me commit. I hadn't made a decision. I just had a lot of information. I could write a dissertation on the whats and hows. Ultimately what it came down to was a gut decision when asked a simple question by a doc who paid attention and followed up.

I have hormone and Her2 positive cancer.  Cancer feeds off of hormones like estrogen and progesterone. Some cancers are more sensitive to these hormones and if they are "positive" - hormone therapies that reduce these hormones can help stop the cancer. The Her2 protein causes cells to grow faster and some cancer cells are positive for too many Her2 receptors. This growth can be stalled by a monoclonal antibody called Herceptin. The Herceptin binds to the Her2 receptors and they can't send their signal. Recently a new drug called Pertuzumab came on the scene- it also binds to the Her2 receptors- just in a different place. Pertuzumab is pretty new- but other than cardiac effects- it and Herceptin are monoclonal antibodies- they bind to specific places. The good news in cancer therapy is that they bind to the cancer cells specifically- unlike traditional chemos that affect all cells. These monoclonal antibodies appeal to me because they are specific. Any damage to normal cells increases the risk of new cancers growing and getting by my faulty p53. I decided against using herceptin last year because sometimes it only works for a short while- I didn't want to burn it's usefullness before I really was sure I needed it.

The toughest part of my decision was the taxanes. Taxanes are a group of chemo drugs routinely used for breast cancer. They work with or without p53 function and don't seem to piss mutant p53 off like other chemos do sometimes. There are 3 different taxane drugs- each slightly different. My big question was which one works the best. Data is mixed. Everything just seems to depend on the person. 2 of the taxanes can only get into cells because they are mixed in a solvent. Those of you out there who worry about vaccines and the "extras" that might cause autism or other negative side effects can appreciate this. Many of the allergic reactions to these drugs are actually to the solvents- not the drug itself. Side effects are due to the drug. Years ago a compound found in the pacific yew tree bark proved to be effective in stopping cells from reproducing by stabilizing it's microtubules- cells can't live like that forever and these cells eventually die. Since cancer cells are rapidly dividing- this is one of the drugs that uses the theory kill as much of the bad as you can, before the good. The side effects happen when this drug affects other rapidly dividing cells- such as hair and nails. The mouth and GI tract also have rapidly dividing cells- so mouth sores- stomach upset- hair loss are the big side effects. I know there have been a lot of improvements in side effect management and hair grows back. The solvents bothered me. And then I read another mutants blog and she had reacted really poorly to one taxane and was put on another that used albumin(something in your blood) to get the taxane into the cells instead of solvents. I wondered why the medical community always starts at the most toxic first. I asked my oncologist about how effective it was comparatively and he said all taxanes had similar efficacy. So why couldn't we start there? Because protocol, trials- all that direct cancer care is systematic- it's like voting along party lines- that's just how it's done. Once I established he was game to vote for me and not along party lines- I knew we had a plan. 

I agreed to Herceptin,Pertuzumab and Abraxane. We briefly discussed stopping my estrogen production- this can be done by shots(yet more chemicals into the system) or by removing ovaries. I will take my ovaries out- they've outlived their purpose and right now just help feed cancer cells.The tricky part is timing it with treatments and potential decreased immunity. You don't want to be healing from surgery with a compromised system.Right now the shark closest to the boat is the cancer and we have to try and stun it. And like that we have devised a specialty cocktail just for me. It has been used in this combination before- it's just a bit non standard. Like me. And it's something I put my belief in and the best way to affect whether or not something works is to believe in it.