Numb

 

Phil's sense of humor after his surgery.




After Phil's sacral reconstruction.

 It's a beautiful fall day as we drive to see yet another new doctor at the Clinic.  Phil has an infection on his lower back from his first main surgery, his sacral reconstruction.  In the picture to your right, they removed a rib on the right side and placed it in the sacral area with titanium rods, screws, and a plate.  However, it seems as though it's just an ordinary day taking someone to the doctor for a cold.  I guess in my mind I know what needs to happen with this infection in his lower back and this has caused me to be in denial.

This first surgery, was scary enough with fear of not being able to walk, use the bathroom on his own, and even death was on our list of complications that could come from this reconstruction.  He was healthy, younger, and without all the other complications that have risen from Myeloma. Now that he is older, and has endured many more Myeloma complications such as numerous rounds of radiation, numerous cycles of chemotherapy, broken bones, kyphoplasty, a blood clot in the leg, and avascular necrosis of hips and shoulders, well, I guess you can say I am broken for what this will make him endure even more.

The surgery is still not set in stone, as this doctor that saw Phil yesterday wants to have a conference with all of Phil's doctors to get a plan of what they think needs to happen.  I did ask, "Do you think he needs surgery?", and he replied, "Yes, the hardware (meaning all the titanium in Phil's sacrum) needs to come out, it's just a matter of coming up with the plan."  Now the last surgeon who looked at Phil's back said, "I don't want to open that can of worms unless we absolutely have to for fear of all the complications that can arise.  The radiation damage to the area is extensive and the tissue is just not healthy."  So what comes to my mind, the uninvited emotion of fear.  A simple four letter word that is packed with an enormous amount of stress, sadness, fatigue, and a numbing effect on the entire body.

Today is a new day, and I am fighting that fear with faith.  It's still not in my control, but God's.  I am asking again, and always for an abundance of prayers.  We don't have any further details until the "meeting of the minds" get together and come up with a plan.  So now we are waiting in left field with fear of a line drive unsure if we can catch all the emotions alone.  We are thankful for all your support, love, prayers and encouragement.  Without them we would remain at rock bottom, sometimes we feel like we face this alone and appreciate your support to keep us standing and fighting.

MRI Shows The Need For More Radiation



New tumor

  As we sit and wait in the waiting room, no words need to be spoken yet again, it's another shared moment between the two of us. We have come to the Clinic for results of Phil's MRI, and we both share concern over this  appointment.  Phil had an MRI on Monday, and Wednesday was the office visit with the Neurologist and Tumor Specialist to discuss the results. Part of this concern is self inflicted due to viewing the MRI CD that was provided to us in which we attempted to diagnosis him ourselves.  It is never a good idea to attempt to figure out an MRI when your not radiologist.  I would venture to say that looking at the CD  put more anxiety on me for this appointment, so I've decided not to do that again for sanity reasons.

While waiting I can only think of the conversation in the car on our way to the Cleveland Clinic.  Phil had asked if I was OK?  I replied, "I just don't want to see you go through another surgery."  He grabs my hand and states, "I just don't want to see my family go through this anymore, I will be fine."  The man is  always thinking of other's first, he just amazes me at times. 

"Phil Kenderes" the nurse stated loudly.  We get up and follow the nurse back to our assigned room number.  Before we get there, Phil is weighed.  We guess at the weight as we have done through this whole process of every appointment at the Clinic, he was closer this time so he won.  The nurse opens the door and we step in and we sit down in the chairs provided.  She proceeds as usual, "Do you have any pain?", "Where is it located?", and "On a scale of one to ten what would you rate it".  Phil answers the questions with a perplexed look on his face.  He never knows how to answer them accurately.  His pain is all over the place on a scale from one to ten.  He proceeds, she documents, takes his blood pressure, and then closes the door behind her.  And again we wait.

Finally after what feels like an excruciating long time in our assigned room, the doctor appears and is going to share with us the results of his MRI.  At this moment I am unsure if I really want those results and yet at the same time I do.  She is standing with her arms crossed, and leaning backwards against the counter.  That just happens to be one of my pet-peeves when your talking to a patient, sit down, and talk with us.  Enough of that, that's just something that irritates me, and I do like her as his doctor.  It's just at this moment I am finding anything that is irritating and going with it.  With arms crossed and leaning back on the sink, she states, "I have been reviewing your MRI, and there is an increase in activity of Myeloma throughout the spine, however, one area on C4 will need radiation."  I was relieved that at least it's not a surgical procedure involving a blade.  However, it's still increase in Myeloma cells eating away at his spine and yet again he will endure more radiation.  She reassures us that even though there is an increase in activity, the rest of the spine looks "stable".

As we leave Phil states, "Here we go again.", with the look of discouragement and anger on his face and Myeloma again peering back through his loving eyes.  It will again be several appointments just to get him ready for his stereo-tactic radial surgery.   The reason it takes time it that the radiation laser needs to be accurate and precise, so a mesh mask will need to be prepared for locking him down to the table.  Tatoos  will be placed on the mask and him for lining up laser.  It's a moment that I am thankful for treatment and yet I  feel angry again that Myeloma  is calling the shots. Once again I am reminded that "God is in control of this, not me, not Myeloma, but God".  I am writing for just one favor from you, will you pray for my husband. 

This is another picture
his spine.

Just another view.

I ask you to pray for strength, comfort, and that the radiation will kill this tumor.  Also, that the radiation will not cause any further damage to the spine.  That he will be provided with relief from pain, and peace  through this next phase of dealing with a new tumor.  God is in control of this but we appreciate your prayers.

Thank you,

It's Not in My Control

     Today, as I'm looking into my husbands usually brilliant, deep, hazel eyes, I'm trying to find a sign.  A sign of how the day is going go. I do this in the mornings of the days that I think Phil may be struggling. And sometimes I can see it peering back at me. It's ugliness, discouragement, depression, and pain all rolled into one. And as I see those terrible things deep in Phil's often soft, and loving eyes, sadly means that it's going to be another day of dealing with Multiple Myeloma.  It also means dealing with the never-ending pain that we have come to associate by a simple glance shared by the two of us, on an otherwise gorgeous morning.
     Phil is hurting this week more than usual, and taking more pain medication to attempt to ease his pain. He has an odd pain occasionally appearing in random spots on his left leg, and up by his lower back. That is one of the symptoms that started this whole process way, way back in 2005.  Which then led to his diagnosis of Multiple Myeloma. And now here we are, 6 years later, and it's is so difficult to suggest even a doctor's appointment.  Don't get me wrong, he has the ultimate respect for all of his doctor's and nurse's, yet doesn't wish to run out and see them anytime soon.  Yet we will go, and we will continue to pray that no "new" spots of Myeloma will be peering out from his loving eyes.
     As I watched him get out of bed this morning from his long sleepless night, induced by steroids, and agitated even more by the onset of his new and additional pain, I see his Myeloma at it's worse.  I stare with with uncertainty, uneasement, and sadness as my heart is pulled from my chest.  I can do nothing more than cringe as the the face of the man I love shows Myeloma written all over it.  His face is etched with discomfort, discouragement, and determination all rolled into one.  His teeth are clenched, and his movement is slow as he is preparing for the simple task of just getting out of bed.  He unwillingly and unknowingly shows slight favor to his left leg by shuffling as much weight as he can tolerate to the right. You see both of his hips hurt, but one is worse than the other.  And although he is trying to favor that left leg, his right foot is soar and tender.  I can see the pain bounce and jump from place to place in each movement.  Now that his hips are engulfed in agony, and the pain in his lower back is screaming like a lead singer from an "80's" rock band, he must now use his shoulders to push himself up into a standing position.  His shoulders are also not in the best of shape, again thanks to the steroids (side effect of steroids is necrotic bone) so as he is using them I can see they are also engulfed in an agony that I can only imagine.  When he has endured more than he can bare, and is almost at a stand, his head is dropped as if to say a prayer, he pauses for a moment to regain his balance and for the pain to subside.  It is at that moment we know that thanks to our faith in God that He is supplying him with all the strength, courage, and love that he will need to get through the day.
     I do occasionally find myself in the midst of worry, and with worry comes the heightened pulse of anxiety.  For me it's a vicious cycle when dealing with cancer and watching the man I love suffer.  If I let it continue then I find myself becoming stressed, overwhelmed, and angry at God.  I often wish to attempt to put control on the situations in our lives, which is yet another thing I am working on, and not the time to go into that complicated mayhem.  Yet I am learning to find the path of letting go of all the disarray of cancer for this is not in my control.  I certainly would wish and still pray that our journey with Myeloma would be easy, and that this disease would just go away already.  Still I am confident that God is teaching us through this process in a diligent and faithful way that He is in control.  We have learned to love and appreciate the good days, the quiet moments, and the love that we have for each other and our faith. 
     We do find our path with this journey sometimes unclear , and we can feel like we are climbing a mountain without any of the proper gear.  Just hanging on by the edge of life, all alone with obstacles to overcome daily.  That's when God steps in and provides us with that gear, with an abundance of  grace, courage, strength, and love provided in an instant.  All of us have our own trials and struggles in life, however, I hope when you feel like you can't go on and nothing seems to matter, you take a moment to pause, bow your head, take a deep breathe in and let go of all that uncertainty.  Focus on your faith and prayer.  God will then direct your path and you will find peace, strength, and courage to get through anything.  I am praying for you Phil each and every day.  I love you.

Even Though It's Not Thanksgiving.

Sometimes in life you have to take time to be thankful even when it's not Thanksgiving.

Number Ten:   I am thankful that God seems to put a friend, coworker, or family member in my life at the right time with encouraging words, thoughts, and prayers.

Number Nine:  I am thankful that we have insurance that pays for Phil's medications that ease his pain, strengthen his bones, and yes even the chemotherapy that keeps the cancer counts down.  I am also thankful for the Taussig Cancer Center at the Cleveland Clinic, ranked number one in Ohio for Cancer care.

Number Eight:  I am thankful for every day that I wake up with my husband by my side.

Number Seven:  I am thankful that God has given me laughter because without it I would be psycho....or maybe I am? You decide.

Number Six:  I am thankful for my girls, who have been a blessing in my life to watch them grow into beautiful women.  Who show support for their Dad, help him in his fight, and love him unconditionally. 

Number Five:  I am thankful for Murphy's Law, for without it I would think I was Eeyore.

Number Four:  I am thankful God has shown me so much in the last seven years with my husband having cancer.   I have learned perseverance, weakness, failures, strength, determination, love, patience, and I have learned to laugh at cancer, yes we laugh at it.

Number Three:  I am thankful for the two puppies that we got, even though Phil didn't want another dog.  Our puppies love and support Phil, and Phil loves them back. (And when they know he doesn't feel good, they are patient, supportive, and even protective over him-to the point where they won't even let me "bother" him)

Number Two:  I am thankful for Phil's Disability.  This has resulted in him being able to be home, and yet cared for with some financial ease off his mind.

Number One:  I am thankful for God, for without Him, I don't know how I would make it.

Butterfly Moments

As I was sitting the other morning, I began to think of the past as long hallways, behind each door are memories and moments filled with life's journeys.  I guess in way I have categorized and stored them behind different doors.   Each door represents the pleasures, love, discouragements, failures and the devastation of negative choices made in life.  Some of the doors are not so easily accessible, some I'd rather keep barricaded.  Those butterfly moments in life I visit with a swinging easily opened summer patio screened door, the ones I could say my whole life is made up of.     

Those memories that are behind the summer patio door are filled with those moments in life, that when you step the memories, each is filled with butterfly moments.  It's warm, cozy, and filled with unconditional love.   I am instantly taken back to the wondrous innocence of my carefree youth.  Or reminiscing the day Phil and I eloped in Virginia, hiking the mountains, sitting by the fire, or when we were back at the hotel and the cleaning lady walked in unannounced (that's a memory all in itself full of nonstop laughter).  I can then revisit quickly the miracle of delivering my two daughters, and how I have been blessed to watch them mature into beautiful young ladies.  Or, I can step into such amazing memories like camping with my family, and floating in inner tubes down the river on a lazy, hot summer day.  Those are the memories that are carefree, easily accessed, and still give you butterflies like the day it happened.   

The doors that I have shut tight have the memories of things like arguments with harsh words spoken in anger, stealing a piece of candy as a young child, or those quick negative judgemental moments on a person who then turns out to be the one who's got your back. Those uncherishable moments in life that when that door is finally pushed open make me sick to my stomach and I cringe in disappointment.  It's those embarrassing moments of failures that I should've got up quickly, dust myself off, and tried again.   I wish there was a way that I could make those doors disappear, although at times I just slam the door quickly.

The double locked and barricaded doors are those memories filled with deep resentment, undeniable painful mistakes, or the forgiveness I've been given when I didn't deserve it.  It takes so much to find the courage to find the key to unlock the locks, rip down the barricade's and slowly open those heavy steel doors.  Then when I finally get the courage to let them open, the flow of tears roar through like a tidal wave.  It's a personal emotional powerful storm filled with waves, thunder, wind, rain, and bolts of lightening piercing the center of my heart.  Those steel doors have haunted my mind, and tormented my soul and broken my heart.  If I could, I'd love nothing more than to burn down the whole room in an instance, however, It just doesn't work like that.  Although, I'd love to erase those past regrets that have been forgiven but will never will be forgotten.

I am finally learning to allow those doors to remain open, taken down the locks and have thrown away the keys.  For the mistakes I have made in life do not define who I am today.  I am not going to allow the branded name of lier, thief, or et cert era to permanently scar me or define me.  Rather I am confident to take the challenge in life and to claim the abundant life God has created just for me.  Thankful for that renewed energy of opening a new door each day armed with the knowledge of lessons learned in the past.  It has encouraged and inspired me into being a better person, loving longer, and attempting to make the most out of life for me and my family.  My wish is for this lifetime that we share together, is for more of my tomorrows to have more easily opened patio door filled with butterfly moments.

The Storm

     I'm tired today, feeling sorry for myself, loathing in my mistakes in life, and over doing it I suppose.  I was feeling as if I want our life back, back before mistakes, back before Phil was diagnosed with Multiple Myeloma, back before Heather was diagnosed with a  Pituitary Tumor, and back when I was younger.  When energy was abundant, time was forever, and love was all that we needed.  I was allowing myself to spiral down on the road in life this week, and I need to get off the ride, take a deep breathe and pray.
     Phil's needs to have a "small" surgery soon, and I was caught in the self loathing and silence of my own mind.  Numb with concern, over-whelmed with life regrets, and caught up in the negativty of life.
     It has been a busy week with doctor appointments and work.  My daughter, Heather, had an appointment for a follow-up in regards to her Pituitary Tumor.  Then we had to go to her vision checked with a Opthamologist who specializes in Pituitary Tumors and Neurology.  I am humbled and thankful that everything is in check and no new issues.  Blood work looks good, vision is good, she needs glasses but the tumor is not affecting her vision.  Thank you God.
     Phil has an infection in an old surgery site, his sacral scar.  This is a reoccurring infection and it will need to be opened, cleaned, and plastic surgery will get involved.  This area on his back has had so much radiation that it basically has no healthy tissue underneath.  Plastic surgeon will most likely graft a piece of skin to it, which will in hopes prevent further infections.  We don't have a surgery date yet, we have to go see a Plastic Surgeon next week.  I mean no offense when I say this, but we are not looking forward to another doctor.  It's not that we don't appreciate our doctors and nurses, it's just that we sometimes are done with going to them.  I know God will look over him, and give me strength to get through this, but for a moment I was loathing in self-pity. 
    As I was sitting in the living room loathing in self-pity, complaining of self induced exhaustion, complaining I have to work next few days, and just not my usual self.  It began to storm outside.  The clouds covered the city, lightening and thunder lit up the sky.  It was then that the song by Casting Crown, " Praise You In This Storm" came to mind.  God is good, and all of this is in his hands.  I hope when you go through "storms" in life, you don't forget to pray. It's easy to spiral down, become overwhelmed with stress, and exhaustion.  Just know God loves you, family and friends pray for you, and love will endure.  The sun will shine again.

   

Phil's Top Ten Memorable Myeloma Moments

10.)  Sitting in the office with Dr. Lieberman, (the greatest Neuro Surgeon with God given talent), with serious undeniable tension surgical talk of Phil's first surgery, his sacral reconstruction.  The intense listening of what the surgery will involve.   It was beyond our comprehension of titanium plates and rods on an irradiated and shattered sacral bone,  removing a rib and implanting it good God where!? It was more than what we anticipated for a visit with our surgeon that day.  It was filled with fear and possible complications that could happen as a result of the surgury.  And even the possibility of never walking again.  At that moment when you feel the tension is building, and you cannot possibly tolerate anymore stress.  What could happen next that causes more laughter at the right moment you ask?  Phil's phone starts ringing "It's peanut butter jelly time, It's peanut butter jelly time."  A ring tone that if you have not heard, you must experience.  A tension breaker of laughter poured out from all of us, still to this day, I know Dr. Lieberman is still laughing, and so are we.

9.)  After leaving a full day at the hospital, tired from a long day, and armed with new prescriptions that will hopefully help ease Phil's pain.  Unfortunately only to realize that you are now mandated to drive 40 minutes to the approved pharmacy by your insurance carrier to get prescriptions.  Arriving to the new pharmacy, wait in line, and finally you hand the pharmacy tech the prescription.  She is suddenly startled by the amount of milligrams of pain medication prescribed to your husband, and she says in a loud voice for all to hear,  "WHAT,  has he been on THAT amount before? I have never seen a prescription for morphine for THAT many milligrams." I am now utterly annoyed not only with her uncaring voice, and that the people behind me have heard her say that in a tone I was not happy with, but I see Phil's heart sink, and his emotions spiral downward.  Now armed with fatigue and annoyance I let my sarcasm flow out which I probably should've refrained from, however, she was so rude and unprofessional.   So I reply, in that sharp tone, "No they just prescribed that amount TODAY for his stubbed toe." and she says, wait for it, wait, you bet, she says,  "What?, Really?".  Now I know I shouldn't of said this, but it snapped out of my mouth before I could stop it,  "Do you have the medication?  The CANCER is NOT ONLY EATING HOLES IN HIS SPINE, BUT ALSO FORMING TUMORS as we speak, and he really needs those pain meds today." 

8.)   Leaving Dr. Chouhan's office, on the evening of the "official M.R.I reading" appointment and trying to digest news of a tumor in Phil's spine.  After approximately three minutes of driving, which felt like an eternity, in a semi-catatonic state of mind, barely processing the not-so-good news and diagnosis.  I just had to pull off the road for a minute.  It had just started to rain, and it seemed as if there was a lot of traffic on the road, and the world was just spinning around us.  At the same time it was all just standing still.  Phil looked at me in that are you trying to kill us pulling over here and said, "What are you doing, you can't pull over here?", I said,  "I am realizing the path that lays before us, and wondering how we are going to tell our daughters this news".  Phil looked at me, smiled, and said, just tell them "tumor is riding shot-gun".  Now for some of you that may seem morbid, but it was what the Doctor ordered, we laughed until we cried.

7.)  After one of Phil's surgery's, he is placed in one of those lovely two patient rooms, and I'm attempting to sleep on two chairs pushed together.  Phil's roommate, divided by one of those lovely pull curtains is sleeping away at 2:00 am, with his C-PAP on (a noisy device that sounds like Darth Vader breathing).  Not only does he have the device but he SNORES through it.  "Darth Vader breathing, ungodly snore, Darth Vader breathing, ungodly snore, Darth Vader breathing, ungodly snore."  Phil and I are coughing loud, hitting the wall, and basically over-tired and at our wits end trying to come up with an idea to get him to stop snoring at least for a moment.  I finally figure it out, I tip-toe over and get his phone extension number, and then tip-toe back only call his phone extension.  "Ring, Ring, Ring", other patient scrabbling to find his phone picks it up,  "huh, what, hello".  Click, I hang up. Phil gives me a high five, snoring stopped, and we get some sleep.

6.)  Explaining to Phil that "Getting a Port" (a device placed in his chest for his bone marrow transplant) unfortunately does not mean a place where you dock up to and get off a boat and explore an exotic island.

5.)  On a more sensitive note.  I will never forget the look in Phil's mom's eye's, as we were waiting in the hall for Phil to be prepared for his first surgery.  The uncertainty we both shared, the quietness of love and support, and the pain we felt for what was about to be performed.  I looked at her and said, "I am his wife, but I can only imagine what your feeling as his mom."  Her eye's filled with tears and no words needed to be spoken, for I could see Mom holding her little boy in her arms.

4.)  Sitting in the waiting room, watching Phil fill out those wonderful questionnaires?  Where is your pain? How does affect your mood?  How does it affect what you do?  Each questions Phil looks at me well what do you think, rating it from 1 through 10 for each question.  What is your pain now?  Phil says, well I just downed two cups of coffee, walked a mile to get here, ate a pile of pills, and my hips hurt, my spine is radiating like a piercing hot tire iron through the center, and everything is getting on my nerves already.  So I think its a "three".  Realizing the pain that he suffers each day to survive at a number he states calmly as a three.  I am humbled by his will of survival and determination, and embarressed that my hang nails are a three. 

3.)  Receiving the out cry of support when Phil was first diagnosed with his spinal tumor.  We have received donations from our co-workers, Indians tickets, gift cards, games for Phil's for X Box, a lift chair, gift baskets, prayers, cards, two of my neighbors will plow our driveways when the snow belt is relentless on us, both our moms taking time to prepare meals, fundraising events and the general overflow of love and support from friends, family, and even people we didn't know.  Which somehow "Thank you doesn't seem enough". 

2.) Watching my own mom cry the day Phil came home from his sacral reconstruction surgery.  Phil had to use a walker at this time to make it into the house.  She was so saddened to see her son-in-law struggle.  She stated, "He is such a good man, and doesn't deserve this. I have watched his strength over the years, and he will conquer this disease." 

1.)  Learning to enjoy Phil's early retirement in life, taking more from and appreciating those special moments in life that you may sometimes take for granted.  Feeling so appreciated and loved for the things I do for Phil without ever needing one word being spoken between us, just seeing it in his eyes.  Ultimately realizing how that with God, somehow, it all works out when you feel like you just don't know how to go on.  It is handled and taken care of by His grace.