Something’s off – A Volcanic Rumbling Within

The following is the first chapter from my blog book, PTSD and Cancer: Lost, alone and afraid

March 2, 2009

What words to hear! What words to speak! Cancer free.

But I feel tweaked, bent. How do I explain?

Those who shared their experience with me said transitioning from treatment to cancer free and then regrouping and getting back to life was not easy. I am now wrestling with this very transition and what I didn’t understand, I am now beginning to experience.

Is it because cancer patients and caregivers are thrust into such an unexpected, unasked for lifestyle, and the focus becomes so intense in beating this diagnose of cancer that somewhere they get lost? Who I was in purpose, my identification in society shifts in the midst of a crisis, and after the crisis subsides, I am but dust.

who am I?
February 16, 2009

So often lately I ask, who am I now? What am I to do with myself?  No matter how hard I try to not let the last nine months influence me, I am not who I was nor can I live my lifestyle of April 23rd, 2008 and prior. I am upside down and inside out.

I am freed from what seemed continuous treatments, health threats, appointments and talk of cancer, cancer, cancer. I am free to step out my front door and be normal again. Or can I? Dog gone it, who is that person stepping out the front door and what is she going to do with herself? I am safer inside, it is quiet inside and routine, it is predictable. Nobody and nothing can assault me.

There is a volcanic rumbling within. A powder keg of emotion and I am not ready to open the door to some of the “rooms” inside of me. I am done being the center of attention, but I am the center of attention. When this volcano blows . . .

It is easy to find distracting projects.  It is wonderful to plan camping trips and cruises, to landscape a yard, to worry about my daughter, to hide in the shower, but it is in the shower that the minor earthquakes and spurts of lava begin to predict an eruption – and it is deep and hot and surprising.

What is so threatening about being responsible in organizing ourselves concerning the hospital bills, doctor bills, finding tax deductions to offset what we will more than likely owe to the government, creating insurance appeal packages to send out to our advocate? It is all so very methodical. Why did I sob and cry and slam my fists into the counter? Why did I hate my body, why did I hate what my body did to us? Where did that emotion come from? It is the rumbling of the volcano.

I hated the insurance company. I hated it! Was it my fault I had cancer? Am I trying to intentionally rip off the company? Why did they quote rates to Huntsman and Huntsman quote those rates to us? We were so relieved and freed from that burden of debt. The “good news” enabled us to spend 100% effort in my treatment and recovery. And then four months later, the insurance company says, “Sorry, did you read the clause?”

And three piles of bills. One pile from the University Hospital three inches high . . . Six letters from the Utah Attorney General’s office stating we owe, “Final Notice.” Six letters from the collection agency . . .

Yes, thank God, the hospital has worked with us and put us on a payment plan until the insurance issue resolves but my anger burns . . . “In order to receive financial assistance you must apply to Medicaid.” “In order to receive assistance you must fill out our Financial Assistance application.” List our income, list our debts, list our house assets, list our assets, write a letter explaining why we cannot/are not gainfully employed and then make copies of all the above.

WE SHOULDN’T BE DOING THIS!!! My husband worked, he was gainfully employed and he retired. He was responsible with our finances. We retired debt free, we built a house debt free, he provided for us through a retirement account and, now, we may have to use it to pay off my stupid, stupid hospital bills? My heart is so broken for my husband; such a provider and now having to possibly use our retirement money on this hateful cancer! This is when I cried out, “It is not fair! This wasn’t supposed to happen. My stupid, stupid body . . .”

But it is today, another day; another day to choose how to live this day. How shall I respond?

God showed me, in His very loving kindness, I am tight-fisted. I am holding on to MY dream tight-fisted and I am not about to open my hands and allow God to be God. I cried out to Him in a hiding place, “Help.” He knows all the emotion and thoughts that are in that one desperate word. I want to hold on to my dream but I saw where my dream was, it was just beyond my reach on the ice and the ice was thinning and my dream was breaking away. If I went across the thin ice to retrieve my dream, I very well could fall into the frigid water.

On April 24th, my vessel, who I was, broke into thousands of pieces. My life flowed out of the vessel. But – gloriously and most graciously, God began to form a new vessel beginning May 1st, 2008 and completed this vessel February 19th, 2009. He filled it full of wine called patience, hope, peace, dependency, trust, brokenness, wisdom and experience. And then one night my dream of getting  back to a normal life became elusive, my vessel smashed breaking into another thousand pieces.

But again, the Potter began His work – only if I chose. The wheel began to spin, the lump of clay applied, water, and now He waited to begin. Why was He waiting? Because I had to open my hands and turn my palms upward to Him. My desperate hold had to release trusting myself  into His care. Yesterday morning, His hands began to work this fresh lump of clay forming it into a larger, more purposeful vessel.  Assuredly, this new vessel will hold a more fragrant, richer and robust wine.

The “who am I” will be answered. When? I don’t know. The emotion behind those unnamed doors will eventually escape. I don’t know when. And I want to respect myself and my husband in letting this emotion come.  I cannot and will not run from it. It is time to begin to explore the “new” me; the plain and simple person, not the cancer person, me.

Mantle cell lymphoma, 5 year mark and “Get out of jail” card

I haven’t written for a while. The first reason is my daughter married in January. It was a glorious wedding and Carrie and Brandon’s special day was more than any mother could dream of or ask for.

Carrie’s wedding was a milestone for me. When I was first diagnosed with cancer my immediate thought was I want to see my children marry and I want see my grandbabies born. Indeed, this was an answer to my prayers and a celebratory event in more ways than one! I shed a few tears and thanked God for this blessing as I witnessed my grown daughter and her new husband exchange their covenantal vows.

The other reason is the closer I get to my five year diagnose anniversary I find I am experiencing odd emotions. I remember hearing from the medical community that the five year mark is a BIG one. For some types of cancer, if you pass the five year mark cancer free, you are considered cured. So I would assume those who had those types of cancers, the five year mark means everything to them. It is probably like a “get out of jail” card – and the hugest sigh of relief heard around the globe.

I was told my cancer, mantle cell lymphoma, is not curable but as the years pass by cancer free, the more unlikely my cancer will return. My primary oncologist, Dr. Glenn, would pride in herself in telling me during my treatment and a few years post treatment, that not one of her patients relapsed who had the same treatment protocol as I did. That was comforting and encouraging but in having cancer and a difficult psychological recovery, hard to accept as true for me. But now I am beginning to wonder . . . could I possibly remain cancer free the rest of my life?

My cancer journey brought about an amazing life change – for the good. I can think of only a few who psychologically suffered as much as I did (or people aren’t sharing with us their true mental and emotional struggles post cancer) but through the suffering and then adjusting to the fact I had cancer followed by accepting the fact I had cancer, who I was prior to cancer changed into a better person in every way. And, funny, the work continues . . . and that’s probably why I am having these odd emotions as I approach the five year date.

Being told you have cancer is traumatic enough, but being told you have an incurable cancer screams death may come soon. And then going through treatment with all this toxic stuff being pumped directly into my heart, a bizillion blood draws, a trillion PET/CT scans, viruses of unknown origin, administering daily neupogen shots, the fear of an infected port line, blood transfusions and platelet transfusions, the fear of pneumonia, having radioactive isotopes dripped into my body, facing a stem cell transplant and denying the extreme seriousness of this transplant, being told by someone this is critically serious and I could die, terrible mouth sores and gut sores, hallucinations . . . oh, I’ll stop there as I could go on and on.

But I survived! I survived all that to only find myself in a very deep, dark depression that seemed to last for a very long time. I never thought a time would come that I wouldn’t find myself thinking every dee dang day about my cancer. I never thought a day would come when I wouldn’t think about relapse and so I waited for it. I would read from survivors, “Cancer doesn’t define me.” What? Cancer defines every inch of my life down to the nucleus of every cell. That statement infuriated me!

But with the help of some counseling and the bedrock of my faith, I came out of my depression and began to move forward. Instead of thinking and planning only three months out, I began planning six months ahead and then I found myself thinking a year from now. And then I realized I didn’t think about cancer every day or even for a few days. As research progressed in the short time from my diagnose, mantle cell may never be cured but the cancer can be maintained by a new generation of drugs; knowing this alleviated my fear of recurrence and death no longer screamed at me..

So where did all this bad news go? I lived with a “bad” outlook for years after my treatment. I waited for the 60-70% non-cure rate to manifest in my life. I was hyper-vigilant and wary, I submerged myself into the cancer world reading everything I could. I advocated and mentored. I empathized and shared people’s fear and sorrow. Always thinking it will soon come back – but it didn’t, it hasn’t.

While in-patient at Huntsman, living there for either a 5 day or 7 day stint, the nursing staff became my life line. I got to know the patients who shared the same treatment schedule. I saw parents and children of those who were being treated. I listened to Jason’s plans of summer camping once his treatment was finished. I saw a family come daily to be with their wife and mother. Jason died, the wife and mother died. I walked the halls to exercise my sedentary body. I was there in the heat of summer and I was there at the first snowfall.

That life was so in my face, hyper-colored and five senses; it was intense and driven, laser focused and unreally real. And now? I am moving further and further away from that life. And that is it. That fight or die existence is becoming a distant memory; all those emotions are becoming fuzzy. How do I incorporate that life and my almost extended five year mark life?

. . . conclusion following . . .

Somewhere . . . Hurricane Sandy

Having cancer is like being blindfolded, forced into a vehicle and traveling to somewhere.  Yes, that’s it – somewhere.  Period.

The doctors and the medical team  hold the map and plan a route to a particular destination but the arrival time is uncertain because there is no guarantee there won’t  be some roadblocks and detours along the way.  And the vehicle you travel in may not be a cushy, comfy limo; it might be a beat up old truck with no suspension left.

My memory recalls all of those who I know with cancer; some are patients, others survivors and some are gone.  Not one of them told the doctors they wanted to take a trip; they didn’t choose to take a break from every day routine and predictability to go to somewhere.  This trip interrupted and imposed itself on them.  No one was expecting this trip.

Who appreciates a predictable and routine day, week, month and year?  Who appreciates the comfort of a roof over your head, a comfortable bed to sleep in, fresh food and water, plumbing, grocery stores, gas stations, giggling (or grouchy) children and a dog that wags it’s tail when he’s happy to see you?  I like all of this, in fact, I count on all of this – every day, week, month and year.

Something happened this week that blindfolded a bunch of people and they were taken on the trip of their life.  The authorities thought they held the map but no one was prepared for the wind that blew the map out of their hands, the wind called Super Storm Sandy.

Today is Saturday, a weekend day.  This day is for many a day off of work and school.  A day for grocery shopping, perhaps cleaning the house or yard, attending your child’s sporting event and watching lots of football on your big screen T.V.  Two weekends ago millions of people from the midwest to the east coast lived a very normal, predictable and routine Saturday; not one person was thinking about what they would be doing in two weeks, fourteen days, from that Saturday.  Probably millions of them thought that they would just be spending another Saturday like all of their other Saturdays.

Last Saturday the warnings were broadcasted; all of these millions of people were told to prepare for a very big storm.  As a matter of fact, this big storm was to collide with two other storms effecting a wide area.  This was so concerning and threatening that the police and safety authorities went door to door to tell them to evacuate their houses, to move away to higher ground.  Some listened, others did not.

Today, Saturday, millions of people’s day, week, month and year routine, their predictable, unchanging and perhaps boring routine was upended.  They were blindfolded, thrown into a vehicle and are now being driven to a destination unknown.  Without a doubt, the arrival time is uncertain because of the many roadblocks and detours they will encounter along the way.

I had cancer.  I was blindfolded and traveled in an old car (not a limo or a beat up old truck) and eventually came to the end of my journey.  My car was okay, the traveling was to be expected with the roadblocks and detours but I did arrive at the destination the docs mapped out for me.

My life is back to predictable and routine.  (Hey, it’s a typical cloudy day in northwest Montana – predictable for this time of year.)

I woke this morning refreshed after sleeping in a warm bed.  My coffee beans were ground and dripped upon for a perfect cup of hot coffee.  I fed the dogs and let them outside to do business. My chair is where it should be and I sat down to drink my coffee.  My dog, Madaline, as always, snuggled up against my left side, always on the left side.  My Bible was in the right place for me to pick up and read and take some notes.  My computer turned on and I read my emails and Face Book page.  The telephone rang.  Someone’s in the shower.  I have to bake an apple pie today.  We will watch a football game on the big screen T.V.

Hundreds of thousands of people woke this a.m. somewhere not their home because they don’t have a house anymore.  Some people slept on someone else’s floor, uncomfortably and maybe a bit cold.  They didn’t have their coffee and if they went to go buy a cup somewhere the lines were too long but they waited anyway.  Their dogs are in a shelter somewhere or their dogs are no where to be found.  Because they have no house, they have no chair to sit in to drink their coffee and snuggle with their dog.  Their Bible is somewhere under the murky water and they certainly do not have electricity for their computers or any hand-held devices that need charging.  Telephone?  Shower?  Apple pie?  Football game?

The predictability of life can change in an instant whether you are waiting for the results to a test or the arrival of a storm.

This morning as I reflected on my life and my now very routine Saturdays, I prayed for all of those who will live an unasked for Saturday.  I don’t know how my one prayer said from my chair with my coffee to my right and my dog to my left will change the lives of those who feel they have nothing today.  But thankfully, my God does know them, He knows all of their names and He knows their sorrow and sadness and grieving.  My prayer may be very general but God is very specific.

Please, God, bring comfort to those who need comfort.  I can’t wrap my arms around them but You can through others.  Please send those others to hug those I can’t.  Amen.