The Samantha Years

A Good Day

Today was our first day of in-home music therapy. I was really hoping Samantha would like this therapy because she loves music.

But I also had my doubts….I have taken Samantha to music classes before.

And they are just okay.

Because kiddos are sitting.

And then they are marching to the music.

And then they are sitting.

And then they are pretending to be trees, swaying to the music.

And Samantha complains because she feels like she is being Mama-handled as I march her around, arrange her in a circle and then sway her like a tree. I can’t blame her because truly, she is being Mama-handled.

The Mama-handling tends to override the love for music.

Today a lovely woman came to our house with a guitar and a bag full of instruments. I held Samantha as we sang You are my Sunshine We put her in comfy, supported positions so she could bang on the drum and I marveled in her toothless grin as she helped strum the guitar.

It is a wonderful feeling when we find the things that Samantha truly enjoys.

She enjoyed her music therapy.

So I cried.

And the music therapist hugged me as she was leaving.

It was just that type of session.

The Samantha Years

Code Orange

Last week Samantha and I shuttled back and forth from Loveland to TCH, TCH to Loveland….back and forth….back and forth.

The hatchback of the Malibu contained 4 pairs of underwear, my comfy sweats, all of Samantha’s meds, 3 Dr. Seuss books, my favorite pair of pajamas and a bag of Milano cookies. I can pack these items in the ‘Bu’ in less than 5 minutes….time me.

It was Code Orange at the Schichtel Household.

This weekend I felt confident enough in Samantha’s health to remove the 4 pairs of underwear, Milano cookies, pjs and the rest of the contents.

I took a deeo breath and downgraded us to an optimistic Code Blue.

That’s right, TSA, Homeland Security and the Schichtels.

Homeland Security advises the following in case of an emergency:

Everyone should establish an emergency preparedness kit and emergency plan for themselves and their family, and stay informed about what to do during an emergency.

All Americans should continue to be vigilant, take notice of their surroundings, and report suspicious items or activities to local authorities immediately.

Emergency plan? We can make it out of the house in five minutes, with the bag of Milano cookies, a clean bra and enough Ativan to make a seasoned Resident at TCH cringe.


The Samantha Years

Hey, we just enjoy it. I think we think we’re getting the hang of this thing you know? Keith Richards

For all of the ‘what-if’s’ I played in my head last night, Samantha passed her medical tests today with flying colors! Pancreas, liver, kidneys all look good and we are a go to continue with the diet.

We are happy to be home and even happier that Samantha’s vital organs look good. She’s quite a trooper, our little girl. Today she handled contrast, I.V’s, blood draws, tests and sedation with a gummy smile, just happy to be held and have her head rubbed.

Samantha has earned the dubious title as being the ‘Keith Richards of Anaesthesia’ from her Anesthesiologist. She has been on so many seizures meds that her body is accustomed to the effects. She woke up soon after they stopped the I.V. sedation meds and was wide awake…no recovery time….that’s right….Keith Richards and my three year-old….good times.

On a note beyond our daughter’s rock star lifestyle, thanks everyone for the good thoughts, prayers and suggestions in case we had to go off the Ketogenic diet. It’s nice to know that where ever we go….you are right their with us.

You’ve got the sun, you’ve got the moon and you’ve got the Rolling Stones –
Keith Richards

The Samantha Years

You don’t have to see the entire staircase, just take the first step….Martin Luther King Jr.

This is not our first step….perhaps our 20th but I still do not see the entire staircase. In fact, just when I think I can see the staircase, it becomes like those in the Harry Potter books…the staircase is always changing…keeping us on our toes.

Samantha went in for a follow up blood test today only to reveal that her metabolic levels are higher than last week. They went down when she was fasting but went right back up once we started back on formula. Her digestive system is struggling, her pancreas is working too hard.

The culprit? The ketogenic diet. This is a tough one for me. The ketogenic diet controls or helps 60% of kiddos with seizures. Those 60% either become completely seizure free or, in Samantha’s case, have good seizure control with diet and reduced meds. But the diet is hard….hard to manage and even harder on Lil’ Miss’s stomach. For two and a half years, her meals have consistented of olive oil, hard boiled eggs and the tinest bit of carbs where we can squeeze it in.

It’s hard on the liver, kidneys and pancreas.

BUT it controls seizures. Hard choice to make, eh?

I have said “hard’ seven times in this post……

Tomorrow we go back in for further testing. Tests will confirm one of two things:

1. Everything is fine. Her pancreas is plugging along. No changes.

2. We need to stop the diet. It is a strain on her organs. If we do stop, Samantha will be admitted tomorrow evening. She will be put on I.V meds, placed on an EEG and weaned off the diet.

We will watch to see if she seizes or perhaps(?) does not seize. We will also watch to make sure metabolic levels normalize.

What do I want?
Ha! As I take this next step…unsure of what lies beyond, I only, truly want Samantha to be healthy……my list of healthy wants include seizure free, healthy blood levels, and a little girl who is not dopey due to too many seizure meds.

Tall order? We’ll see….I’m just taking the step.

The Samantha Years

The People I Know

I am proud to call this woman a friend. Heather Janssen, mom, wife, writer, editor, lovely, proud, force of nature gave this speech on Friday about living with stage 4 breast cancer. Sometimes the ‘unfairness’ in life is balanced by the amazing people you meet along the way…..

My name is Heather Janssen. Please accept my gratitude at your presence here tonight. Whether you’ve been affected by cancer (that’s such a benign phrase, isn’t it?) I think we should say, “Whether you’ve been assaulted by cancer either yourself or because a loved one or friend has, or because you’ve got a child, grandchild or friend in the show tonight, your presence speaks loudly. To me, it says that bringing an end to breast cancer is important. Thank you.

I was diagnosed in May 2008 with stage IV breast cancer. Staging can seem like an unknown to those who don’t know (and who wants to until you have to?) Basically, there is no stage “5” in cancer. When you’re diagnosed at stage four, certain doctors begin to talk about how they’re very able and willing to help make you comfortable before you die. Certainly, for many victims diagnosed at stage IV, the end is near. For many of us, though, it means that we will be forced to live with cancer until it kills us, which, in all likelihood, it will, but may not, and may not soon. It’s very different for every person, since cancer is pretty sneaky and shows up and grows differently in everyone. . For me, what it has meant is that I went through the traditional routes of treatment: chemotherapy, double mastectomy and oopherectomy and radiation. That’s the route most familiar to most of you. After I finished the cadillac round of cancer treatment, I was given a blessed reprieve—the state of being “NED” or No Evidence of Disease. This needs to be clarified as separate from a “cure” in spite of its optimistic sounding nature. Indeed, it is optimistic. What you may not know is that many of us living with this stage IV, or what we call metastatic disease, in any form (not just breast), whether we’re NED or not, generally undergo ongoing treatments which we will face forever. Yes. Forever. So every three weeks I still go to my oncologist’s office in Denver and receive an infusion of two drugs that will hopefully continue to keep me strong, kicking and mouthy for a good many more years. I also take a little pill every night to suppress any leftover estrogen in my body. It makes my feet hurt so I hobble around like a hobbit in the morning, but other than that, the side effects remain unseen.

I spoke last year about how my body was in tatters. I’ve mostly made peace with my deformed body. My scars are healed and mostly invisible, and I’m getting used to this “new,” albeit plumper, me. They serve as reminders—sometimes painful, but more and more, as bittersweet reminders of the terror we faced when I was diagnosed and the subsequent relief we’ve had as I’ve gone well past my “use by” date, if you will.

What I haven’t been able to piece back together quite so seamlessly are the internal wounds. They’re still wide open and bleeding, not yet having had a chance to scab up and begin the scarring process. They keep seeping through the bandages of denial I attempt to use as salve. Simply put, cancer has broken very nearly everything in my life. I’ve watched my husband break, my own resolve break, the woman that I was break, my daughter’s innocent childhoods break. It would be one thing if we could have gone through cancer and were now done with it. Then perhaps the damage could be left alone for awhile to heal without new trauma. But we don’t get to “leave it behind.” Every three weeks I get reminded of my status, and that rips my scabs off all over again; when you’re told, via a stage IV diagnosis, that you’d better stuff a lot of life into a fairly limited time frame, let’s just say, you do what you’re told. I’ve become more mouthy, more giving, a little bit more funny, probably only to myself, and daring, and become who I’ve always wanted to be….at warp speed. There are certain downfalls to this, though. For example, my family no longer recognizes me. It makes it difficult when I pick up my kids at school, or my husband rolls over in bed and screams, “Who’s that woman?!”

The other fallout is that these loved ones who no longer recognize you haven’t entered warp speed. They’ve been left wobbling on the ground in the aftershock of the takeoff of the unrecognizable family member. And something in them breaks. It’s one thing for me to face the terror of a cancer diagnosis and fear the worst. It’s quite another to watch your family and dearest friends wade through the same cesspool of fear, trauma and pain. To watch as they disconnect from reality to gain a tenuous reprieve, or fold inward because the pain of being vulnerable is just too painful. These are the wounds that resist healing, because the fear doesn’t stay away politely like it ought to. It shows up in the most inopportune, unexpected times, and all our resolve collapses. We cling fiercely to one another, forced to face the fear and the pain. In those times I find myself irrationally angry that anyone would love or need me so much that the very thought of my absence causes them such pain. Frankly, I don’t want to be that important.

But we manage to pull ourselves off the floor eventually, put on the pot of coffee, pray for strength, and resume life. Recently I discovered the artist P!NK. Yes, I’m old and out of touch. You probably are too. Nonetheless, she’s raunchy (don’t let you children listen), and her music is pulsating, pounding. I’ve found that she provides the perfect soundtrack to my anything-but-normal life living with stage IV cancer. I can rage while pounding away on the treadmill, angry at the broken pieces of my life. After I’ve defused my rage, I can again enter the center stage of life and see how, though broken, all these beautiful pieces are dancing their own gorgeous, though sorrowful dance. My husband’s ability to make us laugh punctuates our battered landscape with joy. Thanks, Clark. My daughter Emily’s laughter is in itself a song. My eldest, Katie, accompanies our days with a melodic thoughtfulness. Eliza, our baby’s, whole life is one bouncing, lively dance. And Megan, our blondie, keeps us all on our toes, her sharp wit and mind providing lively lyrics to all the music.

I hate cancer. I hate that it puts me in a full nelson of guilt and shame that I’m still a mom without enough time for myself or energy to give to my girls as much as I’d like. I hate that it’s the big, ugly, fat elephant in the room when my husband and I try to talk about the future. I hate that it’s made having even the most benign conversations, sometimes with strangers, wrought with awkwardness due to my inability to respond in a socially expected way, i.e. don’t mention the cancer. Except that now I do. I tell everyone who gives me even a moment of their time or a portion of their ear that I am LIVING with cancer. Not that I HAD cancer and am now “cured.” Not that I “beat” cancer. I say, “No, I’m not done ‘with all that’ yet and explain that I will most likely be in treatment forever, god willing and if they keep coming up with drugs to keep my cancer at bay. Because I’ve decided that, for me, it’s really important that people understand that it’s a part of what makes me “me.” It’s also what makes far too many of my sisters and brothers battling metastatic disease who they are. Part of the “Ride on the Cancer Rocketship” freak show–whatever I’m thinking just comes right out. I talk a lot about living with this disease, salted throughout with heavy sarcasm and an unhealthy dose of profanity, all in an effort to keep this reality from pulling me into constant, chronic grief. It’s one of my most powerful weapons; if I can laugh, if I can cry, if, for the love of pete, I can dance a crazy dance, then it’s not winning. I am. I win. I will not roll over and die to this monster that has broken my life in irreparable ways. I will however, take those pieces and patch them together with my voice, my humor, my loud and obnoxious singing, my ambition, my mothering, my friendship and my belief. I will refuse to allow it to break anything more.

The truth is, we’re all dying. Some of us just live with the reality and its nearness closer than others. It’s morbid, for sure, but it’s also a brutal reality. My life is lived in a middle earth between life and death. But really, when I look closely, when I’m dancing, it’s an earth full of life being lived apart from illusions, with death no closer than my last breath.

-Heather Janssen