Sisterhood of the Travelling Mutants

I  never understood the sorority mentality. The fuss over clothes, hair, secret language, initiations, exclusivity. Until I found my Sisterhood of Travelling Mutants. The initiation is brutal- it is essentially months of cocktails(of the chemo variety) and shaved heads, speaking in code- words like neutropenia, hereditary tumor suppressor malfunction, prophylactic mastectomy or oophorectomy speckled throughout our lexicon.

I never valued the importance of sisterhood until I needed it most. A motley crew we are- scattered about the United States- and even across the oceans. The requirement to join is simple- merely be living with Li Fraumeni Syndrome, no minimum cancers required.

Years ago I joined Facebook while Lily was in Chemo. I did not join as a way to keep in touch with people or get back in touch with people- it was merely to help a friend farm some land to get to the next level. 2 weeks later after calling Phil at work and imploring him to harvest some pumpkins because I had to run errands- he held an intervention. I deleted the app and went about my business. My friend list had grown, putting me in contact with people I hadn't talked to in years. Sometimes this is a good thing. Sometimes.

 I noticed people were in groups and started searching for relevant groups- like Li Fraumeni Syndrome. There was none. So I made one and invited my family. I found the only other support group for LFS on a site called MDJunction and invited them over too. Pretty soon there was a group of people who got it, asking relevant questions and giving amazing advice about how to live with hereditary cancer. Mostly it was just lending an encouraging word after yet another surgery or rough bout of treatment. It was virtual hand holding over fears of scans that could change your life. It is a community of friends. A community of mutants. Some do not like the term mutant, but we wear the badge of distinction with pride. Ours is not the average cancer journey.

Over the years our group has grown. There is an occasional controversial topic, but all in all it is the most supportive, understanding group of humans I have run across and I am honored to be among them, despite the devastating reason we are there. None of us would be who we are without the adversity we've faced.  We have moms who had cancer while pregnant then faced it again with their children. We have moms who have multiple kids going through treatment- at the same time. We have siblings who share the horror of being breast cancer buddies. We have young women making tough decisions about mastectomies since they've already had more cancers than most people's grandparents. We have people who are the last surviving member of their family. We have people who have lived through dozens of cancers and been told multiple times- go home, get your things in order, there is nothing else we can do for you. We have lost friends and mourned with their families.  All of this through a virtual world.

When we heard there was going to be a conference in Boston for our special brand of mutants- the messages started flying. Plans began to take shape. We all know how short life is and opportunities like this are few and far between. I made plans to go solo- gasp! The mere thought of a few days with women who had been my life line through breast cancer and all of Lily's ups and downs was exhilarating. Women I could vent to when well intentioned friends said the wrong thing, again. Women I worried about when their kids had rough patches and scans. Women who could not seem to get a break from cancer after cancer or had to deal with continual medical incompetence. We look out for each other, cheer each other on and most of all handle each other with careful honesty shrouded in sarcasm and laughter.

I had lined up a room for us to crash- true dormitory style. And then the cough hit. Suddenly I needed these women more than anything and the hope of meeting them was flying out of reach. Yet they were the first ones I needed to tell. They were doing research before I even asked. They let me be me when I landed in that scary dark place of "tooma gloom and dooma" and they guided me back out. And they insisted that I go to Boston. I no longer wanted to go without Phil. I no longer felt like I needed the "me" time.  There was going to be another husband there- he actually used to work with f-15s- I knew he and Phil would get a long, it was meant to be. Between appointments and research and decisions- the trip became a beacon of strength. It helped shape the calendar and my mood.

As I walked into the bar at the Inn at Longwood Medical in Boston- I spotted one of my favorite mutants. We were fortunate enough to meet years ago in Maryland and she is like a sister. She tells it like it is, tells you to suck it up and put your big girl panties on but she also will make you laugh so hard you pee in your big girl panties. She will also be the first to call whoever needs to be called to get you an opinion or help. If you can't laugh through this mess, then all you have is mess.  She pulls me towards the table and I know everyone immediately- even though we have never met- we are family. A family brought together by circumstances we can't change. We barely finish hugs when more mutants arrive. It goes on like this for hours. Poor Kevin, Poor,  poor Kevin- a wonderfully nice chemistry major on his 5th day of work waiting tables there had no idea when he showed up that night- a room full of mutants would be his charge. I'm pretty sure he will never be the same- but then again neither will we. None of us chose this, but we live with it- sometimes gracefully- sometimes clumsily- sometimes very very angrily. I'm sitting at a table full of women- 2 husbands sequestering themselves to the end - in awe of us, horrified by our collective candor and trying to catch glimpses of the world series all at the same time. My cousin joins the party and I feel complete. We talk about getting all of our kids together- a merry mini mutant party. It never ever ceases to amaze me how sometimes the most horrible things are the very things that give you what you need. And these women- my sisterhood of travelling mutants give me hope when I am facing a tough journey. They give me socks to warm my feet in the chemo bay- a signed pillow to catch me when I need a rest, a charm with a compass to guide me and know that wherever we are- the others are only a call away. We laughed. We compared scars. We talked about hair and lack of it.  It was the family I've missed all these years. The Mutants took Beantown and I'm pretty sure Boston will never be the same- I know I won't be. And for that I'm grateful for LFS.

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.

Home Field Advantage in the Awareness Game

We just returned home after a week on the mainland. There was little time to stop and breathe and it was not because of glitter or the tumors growing in my lungs. Months ago, I made a tentative plan to see some very special ladies I met in an online support Group for Li Fraumeni Syndrome. The meeting place was to be Boston, tagged on to a conference for LFS. Then I found out my mom was moving from Colorado to Ohio. I thought it would be a good opportunity to stop and see her on the way east. Then I found out my cancer was back and angrily invading other organs. Everything became difficult to plan.  Then I found out my aunt was diagnosed with pancreatic cancer. In my mind this was so much more serious than what I was facing- it was a gut check.  Then 2 of my cousins started investigating symptoms of possible oncological significance. So at a time I should have been researching and making plans for my own treatment, I was helping one into the trenches and another out.  I often like to handle things myself because I appreciate that other people are busy. I'm not talking about your run of the mill work and play balance- I am talking about the fighting the cancer beast busy. I am not the type of person to wave my cancer flag to garner attention or sympathy- when you see me carrying that flag it is because I have to.

Colorado is home. It has been home since I was 11.  I met Phil there, went to school there, watched Bob and Dad die there, got married there, had Bella there and this trip meant saying goodbye to that. Feeling the enormity of the emotional waves was not an option- it would have crushed me. Going into it knowing I have metastatic breast cancer also changed my approach. My mom has an acquired brain injury as well as several other health conditions that have medically made it impossible for her to work. It is hard being across an ocean when you have a loved one who needs help- it is also hard knowing you are in no good place right now to be able to help anyone. I think we both feel that way and it's crushing. But fortunately, in the way of our world,  time is a luxury we are not afforded to float along the emotional waves of major life change.

After a month of tests and biopsies and appointments- I knew I needed to go home. I could not do it alone so Phil, knew he became a part of this whirlwind package.  We spent far less time than any parent with 4 kids, 2 with medical considerations should arranging their care for a week. I don't even have time to think about the favors I owe my neighbors and in laws. All I know is that I trust them and am eternally grateful to be able to rely on them. My gratitude turns to dismay as we enter the airport and find that there are pink ribbons and pink EVERYWHERE. The counter is slathered in ribbons- there are pink flowers in vases, the flight attendants are wearing some various splash or bucket of pink.  I opt for tea instead of the pink lemonade on the flight which is just high fructose corn syrup and red dye. I wonder how much was spent on this awareness campaign. I wonder if those funds could have been better spent. Hell, give away a few flights to women with breast cancer- better yet- fly out a family member or friend to help them through treatment. I have lots of useful things people could do instead of just being aware.

 As Phil and I landed in Colorado, we were surrounded by fall.  This is the time of year we fell in love. This is the time of year both Bob and dad's tumors were diagnosed. The falling leaves and the chill settle into my heart. Probably better than my lungs- those seem to be full at the moment.  As a mom, I know that my mom has been getting no rest- worrying about the unknowns. Worrying about what I am not telling her. The only way I can ease that a bit is by showing her I am Ok. We spend hours looking through photo albums and gently putting them in boxes. The symbolism and meaning are heavy. I know the emotions she is feeling. Colorado is home. And that is why home becomes where the heart is, you pack up the memories and carry them with you.  And sometimes those memories make your heart so full it breaks a little- but time heals those breaks- and that's how we become stronger.

We spend the next day helping move heavy furniture to the garage to either sell or give away. And by we I mean Phil and 2 of my dear girlfriends who merely stopped in for hugs and didn't realize hugs would be given while moving 200 pound bookcases down 2 flights of stairs. Friends who were are part of very different times in my life and yet it is so poetic for them to be there at this time. There were plenty of laughs as I went through boxes of old belongings. Memories filtering through the open garage with the sunlight.

As we do when the emotions become too hard to bear- we start to make inappropriate jokes and laugh our way through. Like when one finds what apprears to be a framed MRI from the early 90's. Most kids when forced to clean out their boxes of stuff- find locks of hair, teddy bears, maybe a letter jacket. Not in a mutant family- we find things like first brain MRIS and your mom says- Oh there they are- I wanted to send you those so Your doctors would have a baseline.  And that is just one little sparkly piece of awesome LFS memory lane.

We round out the work with other trips down different memory lanes- CU Boulder. I forget that Phil hasn't been here in years. Mom says it's been awhile for her too. The goal was to stop in and get a couple t shirts, but the second we parked- Phil started- oh I can see the stadium.  Look over through there you can see the stadium lights. I say nothing until he gives up the passive mentions and starts worrying that I am not hearing him. I'd really like to go see the stadium. I giggle and give him a squeeze- of course I will take you to the stadium- it's on the way back.  We find our shirts and continue on. CU was a safe place for Phil during his years at the academy- I would drive down and get him and find tickets for him to join us at the games.  One year a group of us saw an open gate and went and played on the field- running plays, building pyramids- it was what college memories are made of. I even arranged for his parachute team to jump into the stadium one year. The year Bella was born- a gate was again open and we snuck in for pictures.

As we get closer to the stadium, Phil is practically running. He starts at the first gate- clutching the bars, trying to get a peek. We have to pry him away to get pictures.



 
I turn around and he's off, checking each gate- he works his way around the building. I am standing there with mom- watching him try to squeeze his nugget through the bars to get just a little better view.  He smiles and looks over his shoulder- You are NOT going to believe this- Ralphies pink!  Oh god- even poor Ralphie at midfield is forced to don the color of breast cancer awareness. Mom gets a thoughtful smile- I'll be right back. She marches into one of the offices inside the stadium. Phil wants to know what she is doing. Who knows? Dad used to do this all the time and usually when he did- a magical story was being written.

A minute later mom reappears with a lady named Ann. Ann is my middle name, named in honor of my dad's oldest sister. She has always watched over us. She was the first sibling to die of cancer in my dad's family. In Ann's hand is a ring of keys. She walks us over to the big iron gate, unlocks it and lets us in. Phil is running down the stairs before mom and I even are through. This is happiness. Seeing the ones you love happy. I am in awe of my mom's magic. I can feel the angels wrapping their wings around us. We pose for pictures and thank Ann profusely. Turns out she is the women's golf coach. She hands us each a CU hat- which floors me- not only did she take her time to let us take pictures- she is leaving us with parting gifts. My faith in humanity is again restored.

As we walk back to the car, Phil is bouncing with happiness. I ask mom how she did it. Oh it was easy- I just told her that you went here years ago and you were just in town visiting before you started chemo on Monday for metastatic breast cancer and we just could not believe that Ralphie was pink and was there any way we could get a picture. 

I laughed and made a comment about being careful about burning our cancer card too soon. Phil turned to me and his grin was priceless- I'm pretty sure if that burned the cancer card- it was totally worth it! 

This week in History

I tend to get reflective in October. October is a huge month for us historically. From Phil and my official, not so official "first date" to crazy punkin traditions and finally the cancer tradition. 5 years ago this week we found out Lily had a stage 3 adrenocortical carcinoma and an aggressive sarcoma.

I remember researching and seeing the words poor prognosis  and 5 year Survival rates less than 50%.  At that point I couldn't think-I didn't want to think. I couldn't imagine a world without Lily and none of the research was helping me to decide about treatment for her. A good friend told me to stop researching and go be a mom.  So I did.  In the process of being a mom- the doubt shrouded in survival numbers and rarity faded and the fighter that is Lily appeared. The decision became easier.  I knew we were going to get through this.

This week marks the 5th Anniversary of Lily Monkey being cancer free. I looked back at our past 5 years and they have been anything BUT cancer free. But the amazing thing is that we get to Look BACK!!  Here's a look back over the past five years and here's to many, many more 5 year Cancerversary Octobers together. Click the year to Read Blogs of this week from years past.

Last year.  2012

2011

2010

2009

2008

Andrew and his terrible, horrible, no good, very bad Cancer Awareness Issues.

When you deal with cancer, all of life's normal bumps in the road become really big potholes. A few weeks ago, BC(before cancer- most recent cancer diagnosis) I was on the way back from my naturopath's office when the van stalled. I was a little PTSD already since the time I was on the H3 prior to that, I got a flat tire. (Talk about thrill ride- changing a tire on an elevated highway where people love to hug the shoulder.)  Fortunately the car restarted and I made it home.

Wednesday I had an ECHO at o' dark 45. As I made my way to Tripler, the van practically on autopilot- the engine light comes on. GDMFCSSOB. I call Phil to report the newest development. He takes care of calling and scheduling an appointment with Tony Honda for Friday. He's a very loyal customer. We've been going there since we moved here and he bought his CR-V there. We've tried other mechanics and although at times they are cheaper- long term- it always ends up more expensive. We know our maintenance guys pretty well. We are Honda people.We know that the red van has been through a lot. We got her after Kiera was born. She drove from VA to DC and  Philly multiple times. She drove us down the coast to Eglin, FL. Then back and forth to Alabama for multiple hurrevacs, trips to Disney and to see friends. Then she drove us all the way across the United States to LA- where she rode a big boat full of other cars to bring her to her retirement paradise.

Her retirement has not been all sand and sun. Well a lot of sun. And A LOT of sand- but mostly dirt and juice and goldfish while schlupping back and forth to school and Tripler. When we paid off Phil's car- we discussed trading her in. I decided it would be better to run her into the ground. It's what she loves. Yet today the ground came rushing at her , we are close to terminal velocity.

Phil drove her into the dealer, I picked him up and took him to work. I had to run some errands so off I went. I was all up in the child's clothing department at the NEX when I get the call. It's Andrew. Andrew is one of the maintenance customer service guys at the dealer. Andrew and I go way back. Other than an unfortunate incident involving wiper blades - our relationship is amicable. Until today. I answer the phone while sorting through shirts- I want to do family pictures before I look sick.

Hi Mrs. Mallory, this is Andrew. SIGHHHHH.

Hello Andrew.( Eyes roll. The van is old. I know what's coming. )

I'm really sorry, I don't have good news. 

Ok, How bad is it?

Well. It's not entirely terrible. The transmission is going. It's kind of like when the doctor comes in the room and says he has bad news....(I want to yell stop- don't do this Andrew- you are not ready to go down this path with me) but you know just like they can't tell you that you are going to live for a few months- it could be years- I can't tell you how long it will last. You have 2 vehicles right?

I think I snorted. I'm not sure. - It's ironic you used that analogy Andrew because I just found out I have grade 4 metastatic breast cancer and I need my vehicle to get me back and forth to Tripler for treatment.(yes I know grade 4 and metastatic is redundant- but obviously Andrew has the cancer awareness of a stone.)

Oh I am very sorry to hear that- but I know you are loyal customers and military and have been with us for years- I will talk to the guys in sales and make sure they get you a good deal.

Thanks Andrew- I'll be sure to let Phil know.( Maybe he can get him a good deal on wife #2 too, ass.)

SO I call Phil. And I think there were people around. With kids. And I think I may have dropped an F-bomb. Or 3 while relaying the conversation. Phil laughs. It's the same laugh that is squeaking out of me. It's the GDMFCSSOB laugh. He tells me to come get him- we'll go get the van together.

As I drive to pick him up, I am incredulous. I relive the conversation. I laugh. People really don't get it. I'm sure Andrew was doing the- it could be worse tactic- at least you're not dying. But I am. Maybe not now. Maybe not for many years- But God damn it now I'm mad. I don't want a new car. I don't want Phil to have to worry about a car payment now. I don't want to worry every flipping time I get into the old van that she's gonna die on me. I don't want to worry about a new car sitting in the garage and me being too sick to drive it.  Now I can't breathe again and I feel like the flipping car is a metaphor for my life right now and my transmission is failing. Now I'm really flipping mad at Andrew.

Phil looks at me and asks what else happened. Because surely Jen would never cry over a van transmission- it's utterly ridiculous. But Jen is tapped out. Jen's transmission is tired of trying to drive around potholes left by people whose lives aren't devastated by cancer. Jen's transmission is tired of other cars saying things like- my 92 year old car's transmission failed too- I know what you are going through. Jen knows her transmission can't be fixed. And when Phil drives us around the lemon lot to take a gander at prospects- I partially wonder what's the point? No car lives forever.

Then Phil starts chuckling. Flipping brand new shoes. Gonna trade her in with new shoes. I laugh until I cry, again- a reference to the new set of tires we had to get after the unfortunate H3 flat. I think for a moment of that damn Christmas Shoes song- where the little boy is buying shoes to send his mom to heaven in and how like pinkwashing all this month- I am going to have to endure hearing that blasted song this holiday season. That is not spirit. I have lived too many Holidays like that. My dad and brother were both diagnosed with brain tumors in November.  I don't want my kids to hear that damn song and have to answer hard questions, again. And I don't want to be bitter. I don't want to be like this. This is not living.  I worry about telling Lily. I know it's silly. She keeps telling Phil how much she does NOT want a step mom. Now she's gonna have a step van. But maybe she'll like the step van and it will be an avenue to accepting change. Phil says the van is connected to me and is devastated by the most recent development in my health. Perhaps the van is being selfless and wants to go on her own terms- maybe she knows something we do not- maybe she knows I'm gonna need a different van to get me through the many many years to come of schlupping back and forth to school. Yeah that's it.

Finding Time

As a mom, I feel the one of my main goals has always been to find the time. Find the time for fun stuff through the mundane but necessary. Find time for hugs when arms are loaded with laundry. Find time for people at the expense of self. Finding time for me when it feels like time is running out. 

Cancer robs you of many many things. The first thing it robs you of is health. People look at cancer different ways- sometimes cancer is seen as a warning, time to clean up the system and reboot. Some times it feels like a death sentence, something to be dealt with over and over until the pardons don't come through. Sometimes it is a life sentence- a way of living after you learn what is worth living for. 

Cancer robs you of the ability to plan. It is not merely indecision. It is living day to day not knowing what tomorrow holds. It is knowing that at the last minute you will be forced to change plans for events that are out of your control that need to be dealt with. It is making tough decisions knowing that those decisions will occupy your schedule to keep you here. To keep you alive. 

Cancer robs you of time. Time for appointments. Time for surgeries. Time for chemo. All take the place of things like time for taking the kids to the beach, time for fun,  time for cleaning.The absolute needs go first. More often than not there is not enough time left over for wants- unless you find time. 

This weekend- like any other weekend- filled with activities- we go from a soccer game to a production(Schoolhouse Rock this time) to another production-to squeezing in a pumpkin patch visit to another production to what the heck happened to the weekend. Relief flooded over me when Phil said he had Monday off. OFF. There are no off days in cancer world and I haven't even decided on treatment yet. These hectic days will be a fond memory of quiet times in a few weeks. But watching the girls do what they love- makes me happy. Listening to Phillip play the piano while I try to pick up the house makes me happy. Being with Phil makes me happy. Even if it's running around and trying to squeeze everything in.


So Monday began with a plan- our traditional off Monday morning "date" walk to starbucks. I've missed it. I launch into discussion of treatment research

and ideas and my thoughts. Not the traditional walk and talk and laugh, but something we have to find time for. I know that the treatment decision has been weighing heavily on me. It’s weighing heavily on Phil. I also know that I feel bad that doctor’s appointments occupied the entire week. It not only robbed me of fun time but them too. I hate the collateral damage.  Phil and I discuss what needs to be done today and what we would like to do. He wants to go to a movie. The kids want to take out Halloween decorations. I need to clean. I promised them we would do it over break and we are officially on the holiday day off after break. 

We get home and tell the kids the plan- in order to do Halloween decorations- the house has to be picked up. I start by a bookshelf- Phil plays the trailer to Gravity and asks the kids who wants to go see it. Everybody does- so they all start picking up. I’m not sure it’s the best movie right now. I call my neighbors and get their official movie review. She said it’s really not too scary- the kids are more likely to be bored that it kinda preys on the adult theme of suffocating in the vastness of space. I hang up and feel the suffocation of decisions, of the cleaning, of the trying to squeeze in fun which doesn’t sound fun. And like that -I can’t breathe. I’m sitting in a puddle on the floor- kids have scattered and I am sobbing and not breathing. Phil looks confused. I can’t watch a movie about suffocating in space right now- I just can’t and the house is filthy and there is stuff everywhere and I can’t bring more decorations into the house in this state.  He smiles- who cares- the cobwebs are authentic. And I love him and want to smack him with a very large cobweb.

 He starts leafing through a laundry basket filled with papers and odds and ends that has been sitting there for months. Every week I think I’ll get to it. But then I had to get a MRI and a PET and a BIOPSY and a PORT and I really don’t feel like organizing my desk. But he knows I want to do it but don’t want to do it and definitely don’t want him to do it. He’s pushing my buttons. He also knows that when I get upset I clean and I’m obviously upset and he’s showing me the path. In an hour we’ve tackled the basket- and the front room is feeling livable again. He gets down the Halloween decorations from the rafters. It’s pretty much dinner time. And like that time has gotten away from me again. Yet the kids squeal over the Halloween books and help put everything out and even though we didn’t get to a movie- we did accomplish that. Sometimes time is funny that way.  There isn’t enough time to do everything- so you just have to decide what it is you need to do. And in that process everyone may not get what they want, but you might sometimes find- what you want most is to get what you need. And when you are really lucky like me- you have someone wonderful who takes the time to make it happen.

I'm allergic to Tripler

The evening of the port installation, Phil performed a routine wound check. I hate that this is even a thing in our house. We have site checks, blood sugar checks, hormone checks, medicine checks. Checklists keep us running. This wound check revealed a bump- not on the incision but below the supposedly nonreactive dermabond. I don't know if you remember, I'm allergic to everything. When I had one lump removed- I reacted to the steristrips- which is odd because I had 4 c-sections and no problems with them. I was allergic to adhesive- had 2 wounds dehisce due to inflammation. I was allergic to every brand of tape they tried in the week after. When I had my mastectomy- I was allergic to the latex in the ace wrap- a perfectly mummified rash wherever it touched as well as the blistery welts that snaked along my side wherever the drain tubing touched. Then there was the adhesive on the tubing. It was not fun.  Phil knows my tendency to react and his dressing change skills now match his undressing skills.  I would rather he check the oil- the perimeter- the hoses- the pipes- what have you-not my tiny pustule ridden chest anymore. I'm pretty sure that isn't in the marriage contract. Yet he does it because at some point he decided he married up with me and I conveniently didn't correct him. Survival of the fittest- adapting- that means the best me is only available with him. That and he trapped me with a master plan- but that's a story for another time.

The next morning I wake up to a couple dozen more little bumps and some redness- fortunately not at the incision site- but a reaction is brewing. Phil stands there tapping his foot. You need to call. But I don't WANNA call. I zap a picture of my rash to my favorite mutant wound watch team.  We are headed into a 3 day weekend- as much as I don't want to spend yet another day waiting around tripler- I'd rather it not be in the ER- so I call the Men in Black suite and they have me come right in to IR. The doc scrunches up his face- you really DO react to everything, don't you? I don't even know what was THERE.

Awesome- because if we knew- we could avoid it. It doesn't seem to be the dermabond, because other areas are fine, but it looks like on one posterior edge-the dermabond sealed something in and my skin was not happy about it. The picker in me really wanted to attack each an every little pustule- but the rational person knows that is a baaaad idea. How do you do with Benadryl? He asks. Ok- it makes me sleepy and anxious all at the same time- that's pretty normal these days- so fine. How about Hydrocortisone?  Oral or topical, I ask. He looks at me funny- have they given you oral steroids before for reactions?  Oh no- I say but my daughter is on them so that's the type we normally deal with.   So I walk out of there with a script for benadryl and hydrocortisone cream. Mind you- I have a collection of both at home. I had pretty much decided to use the home supply and was headed out the door when I bump into Phil who obviously is the best husband ever- turned around on his way into work to be there with me. He decided we should use his in uniform benefits at the pharmacy- don't get to do THAT often and maybe I might be getting like 1000% Hydrocortisone cream or something. That would definitely be higher than the 1-3% at home. My chest itches.  I think mostly I'm just allergic to Tripler.

We wait and wait. I ponder how this is the last day of fall break and I have done nothing fun with the kids. They have mostly been unsupervised with the exception of my neighbor and sister in law checking in on them. I know they have loved every minute of playing with their little cousins.  Everything happens for a reason- months ago when we found out Phil's brother and his family were moving here- we were beyond excited. Excited that the kids could know their cousins. Excited for Friday nights and watching football games together and hanging out. Excited to see the little ones grow. Excited to reap the rewards of my sister in law's cooking talents. Excited for family. But as a good friend always says- families are messy. And the week they arrived on island was the week ours just got a whole lot messier. I texted her that morning as I ran out the door and she was gonna look in on the kids for me . She stayed with them when I got the port and I feel so lucky that Phil's brother landed such a wonderful woman and that we haven't managed to scare her off yet.  Those Mallory men- all seem to marry up. I never had sisters- but truly enjoy my sister in laws, or is it sisters in law? Either way- love them.

 I am not feeling the benefit of the in uniform service at the pharmacy. Especially when we finally procure our rx- 1% cream and regular benadryl. But I have spent another hot date hour at Tripler with my handsome man in uniform so - I'll take what I can get and hopefully get rid of this rash so I once again can show Phil how he married up. No wonder he came to check on me- he probably knew I would walk right out of there without the prescription. Love that guy. Either way- the rash is fading- morale is rebounding. One small victory at a time.

Porterized

It's been a long week. And it's Wednesday. Monday was my appointment with Interventional Radiology. It's one of those departments that you have no idea exists until you need it.  It's a very Men in Black, Agents of SHIELD operation as when they schedule your appointment the instructions are this:

Go to 6th foor Mountainside. There will be a phone on the wall outside of the Intensive Care Waiting room. Dial this number and wait for further instructions.

That's where the sexy spy like feel ends because we are instructed to take a seat in the waiting room. This waiting room brings back fond memories(sarcastic face). The Mallory family collectively logged many quality hours in this room. This room was the site of the inaugural "the chairs here suck" campaign spearheaded by my mother in law. 

The good news is that the chairs were upgraded shortly after that campaign and now they recline and everything. But I digress. We are retrieved by a young gowned man who directs us to yet another secret door around the corner which opens to...duh duh duh- an exam room. It was overly anticlimactic. The Interventional Radiologist comes right in and apologizes profusely for us having to be here, read up on my file yada yada. I like him but he seems young. He starts talking about Li Fraumeni Syndrome and how he read up in it and it seems vaguely familiar from when he was back in school like 15 years ago. Now I feel old and not in the good- I made it to old age kinda way. So in today's medical education - Interventional Radiology(IR) is essentially an offshoot of surgery and is also known as surgical radiology. They are the manpower and brains behind procedures such as stents and ports. With small tubes and catheters- they use Xrays, CTs and ultasound to guide small wires and catheters through veins- avoiding major surgery.

 Ports(or medi port, or portacath) are a fact of life for anyone who has a chronic medical condition requiring blood draws or infusions. So when the doc started the basic background- in the interest of efficiency and full disclosure- I let him know we were familiar with ports- that our daughter had one for her chemo. He looked down- apparently that fun tidbit was not in the chart.  He shows us the mechanism which is very metal looking. This is a concern because I seem to react to things- not just emotionally but metals- adhesives- latex. He assures us it's completely non reactive, wont set off metal detectors, mris or anything- the kids can throw magnets at me all they like- they wont stick. Good enough. I ask if it's a power port- one of my good mutant friends said make sure it's a power port. It will be a power port. It's very Ironman. It's metalish, triangular with a round squooshy part the needle will go in when I decide which super mutant life saving regimen of toxicity I will have them pump into me.

We schedule the appointment for Wednesday. It all seems to be moving fast.  I see the fall break slipping away. I know it needs to be done, there is no good time- but it kills me the kids are off this week and I had so many things I wanted to do with them for fun and now it all seemed to be going up in a puff of glitter. That is cancer. But I try to remember- doing this is to make sure next fall break won't be a complete bummer.

Mind you the 4 kids had dentist appointments at the same time I had this appointment. The good thing about having a dentist nearby is that I made a call to the receptionist and she said she would make sure they were taken care of. In our world that means no xrays. In a family with cancer syndrome known for nasty brain tumors, no I don't think xraying your nugget every 6 months is a good idea. Dental hygiene should not include regular irradiation that could bounce around ones brain and that is another topic for another time. But yes it bothers me that my kids are already taking themselves to dentist appointments. But this is our reality. They were briefed on route, expectations and instructed to text us at every checkpoint. They did.

Today went well. The nurse took a couple tries to get the IV in- one of the main reasons a port will be a necessity- due to my other surgeries I'm down to one good side. I'm already nonstandard in that my port is on my left- it's usually put on the right. But- as the doc put it- since my right side is fairly devastated- lets go with the left. I've always wanted to be devastating. Well there you go.  The procedure is done under conscious sedation- which means happy drugs mixed with pain control. It also means shorter recovery and for me a crazy case of the munchies afterwards. I felt the tugging and was sort of consciously aware but not really.  I apparently have started to develop a tolerance to versed- the happiest of happy juice- but then again I have been making weekly sedation a habit here in the past month or so. Hopefully we can change that.

I am beyond thankful to have my sister in law here who made sure on day 3 of fall break- the children did not spend yet another entire day unsupervised.  Lily hugs me gingerly. I am never sure how much she remembers- but I know this brings back feelings for her.  She wants to see it. I pull the neck of my shirt over and her face goes white. She remembers. I hate that she remembers but she is my inspiration. I remember when she was diagnosed and everything was so bleak and every report screamed poor prognosis at me. But for every poor prognosis, there is one that can defy the odds. She is that one. Maybe just maybe- other than her Super mutant genes- maybe she gets that from her momma too.

Taking an Emotional Knee

Sometimes you just have to take a knee. In Catholicism, you take a knee to show reverence to the Father, Son and Holy Ghost. In yoga, resting on your knees is referred to as the hero's pose. In football, taking a knee is a strategic move. It is move that protects your position and generally works by allowing time to run out, thus ensuring a win. After a particular rough few weeks, my husband again found a way to use football as a metaphor for our challenges. It was time to take an emotional knee.

We shuttled from appointment to appointment in the haze- purposely not telling people what's going on until there was something definite to tell. A comfortable numbness gets you through. My girlfriends call it going underground. Some people thrive off of the support of others and their first wish when the game goes south is to call in the reserves. Some people hold steadfast and will run plays into the ground until there is no other option or they are pulled out of the game. We are those people. We know it's a team effort and it's not that we don't want support- we need it- we just never know how much we might need it later and don't want to use up our reserves. In the process, our own reserves get taxed.

The kids knew something was wrong. Lily reads the appointments off the calendar- purposely scratched in my own shorthand for that very reason.  Kiera hovers just out of sight and listens. Bella seems oblivious but knows more than she'll let on. Phillip is stoic, quiet, helpful. He internalizes everything. I see myself in each of them. I knew I would have to tell them. It is a tough play to try and call. You run it too early and you risk not being ready. You run it too late and it could get picked up or picked off. I know from experience, there is never a good time or a right time to tell someone you have cancer. The right time is when you have cried enough tears and cleared that clump in your throat enough to reasonably predict you can get through it. The only reasonable expectation is that- to just get through it.

It was dinner time. I reached the point that I felt like I was hiding something from them and it was no longer a healthy evasion. I think that's the tough part in parenting- we worry, we predict and try to prepare for things there are no game plans for. There is no route you can run that will bypass the cancerback in this game. It always frustrated the hell out of me in football when they run right up the middle when there is clearly no hole. Don't they see there is no hole? Phil laughs- one at the double entendre and two because he actually HAS extensive football knowledge of which he tries to share with me- He's running the play called, the hole should be there- it depends on how well the defense reads the play. You can say that again. Why doesn't he just go around? He smiles- he can't see what's over there- he's running the route he's supposed to- everyone has a job- if they all do their jobs- he will get through. Ah the metaphors abound. Immune defensive strategy, parenting strategy- emotional strategy- oh where to begin?

I simply asked the kids what they knew was going on. Kiera was first to offer that we were checking to see what was wrong with my lungs. I nodded. We have been doing lots of tests and we know what is wrong with my lungs, my breast cancer is back.  Which side? Kiera asks.  It's not in my breast this time. It's in my lungs. But you can't cut those out! She squeals- you can't live without them.  Our eyes collectively fill with the sad realization. We can't do surgery. Lily looks confused- what do you do if you can't have surgery? I remind her of all the medicines she had to take- and that medicine made her cancer stay away- we are going to see if there are medicines that will help my cancer stay where it is.  Phillip looks horrified. Every last bit of energy he has goes to keeping tears from coming to his eyes.  Bella begins her song- I don't want you to die. If you die I will have to die and that will take like a whole week of not eating.  I think the word die happened about 85 more times while she was talking- the rest of the kids emotionally trying to buffer out the sound of the word non of us wants to hear. Lily falls in to me. Kiera falls into me. The other 2 follow and like that we are a single unit- the horror being pushed away by a bubble of love. Everyone settles back into their seats. I ask Lily if she remembers being sick. She says yes. I let them know that mommy might have to get sick to get better. Everyone dies but right now we are not talking about dying-not yet- there is too much living that we need to focus on. I need them to focus on living. Lily puts her head down. Quietly she says- but I don't want a new mommy.  So I tell her that no one ever gets to know how long they get to live. If something happens to me, I want daddy to be happy and find love. Just as we love all of them, daddy deserves to be happy. And she gets angry and shakes her curls and yells No- you are daddy's one true love. That's not how it works. I could never love another mommy as much as you. It is in these moments in time that you can feel utter failure and success simultaneously. We talked about death. We talked about living. We talked being afraid. We talked about fighting. But we live with love.

The ages and genders of kids affect how they view the world around them. A 7 year old cannot process the permanence of death. Bella sat quietly, cutting and drawing. Awhile later she brings me a scroll rolled up with a bird attached.  I will send letters to you on a pigeon, forever. I will always love you.

Lily sits next to me. She is not your average 8 year old. She has seen sickness, she felt it. She knows she almost died and she knows that it is a possibility. She knows there is no coming back from death. She knows a pigeon will not be able to reach heaven. She chooses to live in the present and collect her due in hugs and kisses. The next day after school she announces a list of people who want me to get better. I envision Lily skipping down the halls, each bouncy curl attacking every passerby with the announcement that my mom has cancer.  That is how she deals- she is rallying her support system and she is calling in every last reserve. She needs them. 

Kiera is scarce. She goes to friends' houses. She feels selfish because she is worried what this means for her then feels guilty so she runs away. She is trying not to feel. Everything is magnified in the tween world- as is this. She too needs her social circle and again I understand.

Phillip quietly goes about chores. He knows I need help and he is doing what he can. He doesn't know what to say. All he can do is hug me every time he passes by.  Prior to this week I can count the volunteered hugs during his teen years on one hand- we are clearly making up for lost time. He lets the girls clear out and stands in front of me. Is it small non small cell lung cancer? He asks. Oh god, he is my child. Have you been researching it?  He nods. It's not lung cancer buddy. I know it's confusing. It is in my lungs- but it came from the breast cancer and cancer is classified by where it comes from not where is is growing. What stage is it?  I know what he read. I know what the answer is and how he's going to take it. Any cancer that spreads from where it started is automatically a stage IV. He falls into me and I wish I could zap all the worry and the fear. Instead I tell him I know how he is feeling. I was his age when my brother Bob was diagnosed with a brain tumor. I know it is scary. There are no good answers. I don't know what the future holds- I just know that I will fight for him and his sisters until there is nothing else I can do. I was only a little older than he is now when my dad was diagnosed with a brain tumor. I told him I remembered those feelings and how horrible it was. I know what it's like to hear your parent has cancer and that's why it was so hard for me to tell him. I told him there were so many times when I was his age that I had really hard times relating to people. I lost friends because hair and clothes and petty teen things mean nothing when you watch someone you love fight for their life. Drama is something for the stage- not something to live with- and teenage girls live for drama. I didn't have a lot of friends because I avoided the drama. His dad was my best friend and always has been. And no matter what- we were all going to be fine. I also told him what my mom and I used to refer to as Mental Health Days are now called Taking an Emotional Knee. A TEK day. It happens. The rule is come to us and talk about it and don't make a habit of it- at some point you have to get back out there are fulfill your responsibilities. But for today- I understand the need to take a knee. It might just give us the position we need to win.

The Painful Side of Breast Cancer Awareness

Breast cancer awareness can be a pervasive sales tactic.  The month of October everyone from Kellogg's to Komen to the NFL pinkwash themselves under the guise of breast cancer awareness. Cereal is pink. Ribbons are everywhere. I can't even sit down to watch a brutal competitive game of  football without having pink gloves, pink towels, and pink stories about survivors and hope floating across the tv. DO your research, just because a product is pink does not mean buying it will do any good for breast cancer research, treatment or survivors.  Awareness increases awareness. Awareness can help early detection. Awareness does not cure. As the government shuts down- so do many vital research projects, treatments, and clinical trials. The shutdown could mean life or death for certain people.

I am all for awareness. This month- many women might get more knowledge on how to examine their breasts through Monthly Self Breast Exam(BSE).  I know enough breast cancer survivors to complete a couple of teams to play a game on an NFL field. We wouldn't wear pink. Husbands might gain a little knowledge and be more supportive through this campaign. Heck everyone needs a back up quarterback- partners make great breast buddies.  One of my good friends made a video on how to do BSE- if you have any questions- please check it out. No nudity- just good information. Breast Self Exam with Trishia the Great


I found my lump almost 2 years ago. It was a thickening. Not round like a pea or grape. It was oblong and I could feel it when I laid on my side. It became an obsession- every night I would roll and see if it was still there. It was. One night Phil rolled over and felt where I was feeling- silently- mostly probably wondering in his ever selfless way if he could be of any assistance in the breast care and comfort department. He loves that part of his job. The silence became a sigh. The heaviness descended. I could no longer worry in my quiet place- it suddenly became a very real problem. My physician could not feel it. I got referred to an oncologist. The oncologist could not feel it. This is why breast self exam is important.  It was not a small lump. No one will notice changes in your body like you. Not just breasts- lumps, bumps, coughs- aches. They individually were less than 3 centimeters- but they were close together- making the oblong shape. MRI revealed a third tumor at a another part of the same breast. They came on fast and they were angry. Most of that is due to my mutant status. It was terrifying. The first October after my mastectomy sucked. I hated the awareness. I was aware. Painfully, lopsidedly aware. Grateful to be alive- angry at the money and resources going into awareness that could be helping find a cure or at least a treatment that would keep it in check. Angry that so many women face this and the treatments still often times fall short.

It is ironic to me that on eve of Breast Cancer Awareness Month, I get the call to confirm that my breast cancer is back. It is in my lungs and possibly bones. There are no surgical options. We have to wait for pathology to see what the hormones are and what the markers of the tumor are to see if there are any treatments. By treatment, in the world of metastatic disease- we mean meds that will help me live with cancer, to keep it at bay for as long as possible. And in my weird mutant world- this is good news. This is the better of the options- because there are options. If it was sarcoma- there would be few options. My mutant girlfriends rallied and only in our select club would you ever have a band of women so heartily praying and wishing for breast cancer. Because like me- they know the alternative is worse.

I am painfully aware of breast cancer as are the other survivors. I am aware of the pain in what used to be my breast and every stinkin day wonder if the cancer is back or if it's a surgical remnant. This month I am no longer wondering. I am facing the fear of the unknowns. Will treatment hold it off, can I keep myself healthy, can I get everything done?  How will I tell the kids? How do I tell family and friends? I am facing basic questions from friends and acquaintances which help me realize that the awareness campaigns too have fallen way short. I am not your average breast cancer fighter- but I am no different. Every damn one of us wants more than anything to live. We want to beat the odds- the select few who win. We will do what it takes to achieve that goal- that touchdown. It is a game. The rules change, the players change- the coaches change. The only constant is what you believe. The rest can change. Let it. One of those changes could be that game winner. I believe awareness will not cure cancer. But I do believe there is someone out there right now who is affected by this nonsense and maybe just take that little bit of awareness might turn the tides of this game. And if that is truly the case, then awareness may in fact be priceless.