backstagefour

Being A Cancer Patient and Clinician

I always knew I wanted to help people but wasn’t sure who I wanted to help.  In my experience as a psychotherapist, I’ve worked with people of all ages and with various mental illnesses.  With each new job, I would dive-in and adopt the clinic’s particular focus but I was always searching for my area of specialty.  I didn’t think my calling would involve my own illness.  I now realize part of having cancer is so I can help others with their struggles with cancer.

I recently returned from the national conference for American Psychosocial Oncology Society (APOS).  APOS is a group of mental health professionals that focus on providing mental health care to cancer patients.  During the conference, I struggled with the transition from patient to clinician.  I went to the conference as a clinician but with each workshop, I found myself identifying more with the patients participating in the research.  However, as both a patient and clinician, I left the conference feeling inspired and hopeful for the future of oncology treatment.  I firmly believe that during my children’s lifetime the days of burning (radiation), slicing (surgery), and poisoning (chemotherapy) will not be the only treatment options for cancer patients.  I learned that cancer treatment is moving towards personalized care based on a tumor’s genetic makeup.  The conference was not solely focused on mental health aspects but overall care.  If treatment outcomes for cancer patients improve, the overall mental health of patients and their families would also improve.

Upon returning from my trip, I met with my boss and discussed the direction I wanted to go within the practice.  He asked me if I would be interested in working with clients with chronic illness.  He informed me about an upcoming meeting with MedStar, the largest healthcare provider in Maryland overseeing 10 hospitals.  I hope that this new contact will bring new opportunities and growth.  By now, I shouldn’t be amazed about how things happen for a reason, but each time they do and I connect the dots, I’m deeply humbled.

This Wednesday, Feb. 26, I have a CT scan.  The results will dictate my future treatment.  My treatment options may be four more months of poison (chemo), or the burning (radiation) of a spot in my right lung and the slicing (surgery) of my left lung, or all of the above.  Please keep me in your prayers.

1 Year Anniversary

Over the past year, people have often commented on my strength and how well I am coping.  I could never see myself as strong.  I was doing what the doctors told me to do and what I think anyone would do in my situation.  I’ve met many people with cancer who capture the true essence of strength but I could never see it in myself. When I was told that my cancer was never gone, I was devastated.  I had done everything I could to beat this and it didn’t work.  Now I realize I am strong because my fight is far from over.

My brother Tim refers to it as P.M.A. (Positive Mental Attitude).  My good friends Alli and Laurie, refer to it as M.T. (Mental Toughness).  The “it” is mental strength and my biggest ally in my fight against cancer.  For me, mental strength is not putting up a wall to protect me from feeling bad.  I’m not capable of doing that.  Rather, it is accepting the times I feel bad, overwhelmed/sad and knowing how to pick myself up.  It is understanding I will have unforeseen struggles and knowing I’ll get through them because I’ve made it this far.  As a therapist, I have great insight into myself and know when I need to break down and when I can hold it together.  I usually break down in the following three places: while showering, driving to work, and in church.  I do not cry in front of my older daughter because she doesn’t understand and I don’t want to scare her.  Crying is not an everyday occurrence and usually the tears are tears of thankfulness.  The breaking down part is what makes me stronger mentally because I see how fortunate I am.  Don’t get me wrong.  I’m not thankful for having cancer.  I’m thankful for everything in my life and I think having cancer causes me to appreciate the things I used to take for granted.

One thing that I like to do is hold a moment in my mind and experience it in slow motion.  I replay the memory over and over again in my mind and feel the same emotions as when I first witnessed the event.  I do this everyday and it usually involves my wife and children.  The moments are everyday simple things like: a hug from Katie, a look from Janie, holding Anabel, a laugh.  I wish I could truly explain living in a moment but it’s beyond words.  It is what gives me mental strength and is very calming.

I’ve used certain mantras throughout this experience to comfort me.  My first mantra was, I’m going to be okay Lord, Lord I’m going be okay.  I would sing this to myself or aloud.  I then went with, Thank you Lord for what you’ve done for me, Thank you Lord for what you’re doing now, Thank you Lord for every little thing (you might recognize those lyrics).  Now my current mantra is, Be not afraid, Kevin. You have found favor with God.  Each time I say these phrases I experience an inner peace and a bounce in my step.

All of this leads to my biggest source of strength…you.  Without your support, I know I wouldn’t be as strong as I am today.  I am truly blessed and very thankful to all of you for your kind words of encouragement.  It was a year ago today that I was diagnosed with Stage IV cancer.  To me it seems like ages ago that I faced a possible cancer “blizzard”.  Even though I still have cancer, I’m much stronger mentally than I was a year ago.  At times I’m still scared, but more often I’m thankful because I’m lucky to have a beautiful family and all of you.

At the beach

Family at the Outer Banks

Eagles training camp with Tim and my dad

Gerrit’s wedding

Anabel’s christening

Cardinal Stafford-my earthly angel and I

Please pray for my good friend Karen and her family.  She is my age and was diagnosed with a similar cancer in September.  She is now under hospice care.  She truly captures the essence and grace of strength.

Here We Go Again

Chemo bags

This Tuesday I will begin more chemotherapy.  It has been five months since I have received it.  Even though I tolerated the chemo really well before, I’m worried this time will be different.

My chemo regimen is the same as before.  Every other Tuesday, I receive chemo for four hours, along with steroids and other meds.  Then, before leaving the infusion center, a chemo pump is attached to my port.  The pump allows me to receive chemo for 48 hours without needing to be in the hospital.  A port is a device which accesses my veins.  It was surgically placed under my skin between my collarbone and pectoral muscle.  One reason for needing a port is that the chemo could blow out my veins if delivered through my arms.  It is also used for drawing blood and administering injections for CT scans.  After 48 hours with the pump, it will beep and I will then return to the infusion center to remove the pump.  Then that Friday I go back to the infusion center to get a shot to boost my white blood cells.  This routine repeats every other week for two months.  After two months, I’ll have another scan and make more decisions based on the results of the scan.

Me and my pump

Pump decor by Katie

I have learned that with cancer nothing is black and white and I will have unforeseen bumps in the road.  The hardest thing for me right now is that I was so close to remission.  After 12 rounds of chemo and two major surgeries, I thought I was ahead of the cancer, only to learn it was never gone.  Now the fight continues.  Previously I was ignorant and didn’t know what to expect.  My perspective has changed and I believe it will make some aspects of these next rounds easier, not easy.  It’s never easy.

On a side note, I’ve experienced more signs that assured me things will be ok.  For me, a sign is an abnormal thing that happens to me on a hard day that helps me feel better.  For example, on the day of my scan I ran into two former clients, whom I haven’t seen in years and always wondered how they were doing.  I also ran into my old boss who helped me when I was first diagnosed.  I consider those experiences as signs because it was unusual to see them especially in the cancer center of the hospital.

Another time was on Christmas morning.  While watching my children open presents, I wondered…how many Christmases will I spend with my wife and kids.  Later that morning I checked my email and saw an email from Cardinal Stafford (Who I befriended along this cancer journey. A future blog entry will tell about my pilgrimage to Vatican City and Rome).  In the email, he said that he discussed my illness and faith with the Pope and the Pope told him, “Assure Kevin he is in my prayers.”  As a Catholic, that was the best Christmas present of all.

Follow up

The doctor told me I have a nodule in each lung. He is not sure if it’s cancerous or not, but with my history I have to be careful. The nodules are too small to biopsy to confirm if they are cancerous. Also during my colon and rectum resection, the surgeon found one lymph node which was cancerous. They were able to remove the lymph node along with 12 other nodes that did not have cancer. Since the node tested positive for cancer and with the additional new nodules in my lungs, 2-3 months of chemotherapy was the recommendation. I will be meeting with my thoracic surgeon and other oncologist for a second opinion this Thursday. They were wonderful for squeezing me in during a busy week.

Not the news I wanted to hear this morning. Today has been a strange day. I woke up this morning and could not fall back asleep because I was anxious about the scan. I exercised, took a shower, ate some eggs with a cup of hot tea (no coffee for me anymore) and went to the hospital to find out if I had cancer. After the doctor’s visit, went grocery shopping, ate dinner and then went to my daughter’s Christmas play, where she played a sheep. After the Christmas play, put Anabel to bed, my parents watched Katie while Janie and I went Christmas shopping. Why do I write this? Because life happens. No matter if I want to slow it down, pause, or fast-forward I can’t. I can’t stop living my life or cancer is winning. Cancer is always in the back of my mind. This is how my life is going to be and it’s okay because I’m going to be okay.

Scanxiety

On Tuesday I have my first CT scan since my surgeries.  The purpose of the scan is to see if they got all of the cancer and if there’s any new cancer.  The week leading up to a scan is always up and down for me.  This time is no different.  I’m not worried about the doctors missing anything with my surgeries, I’m more worried about having new cancer elsewhere.

Since this is the giving season, please give me some prayers and good vibes this Tuesday for a clean scan.

The Best of Times

Recovery from colon surgery is going well and has had its ups and downs.  The recovery is far less painful compared to that of my lung surgery.  I met with my oncologist today who told me to focus on healing from surgery and then begin a schedule to get CT scans every three months.  I was very excited and relieved by this news because I was worried I would need additional chemo or radiation immediately following the surgeries.  So it looks like I will begin to have CT scans every three months to see if the cancer comes back.  Thank you for your prayers and positive thoughts.  Going five days on a clear liquid diet was tiresome.  I should be able to return to my normal diet by Thanksgiving.  I have lost a lot of weight over the past two months and hope to gain it back in the next three months.

When I began chemo, I expected to lose my hair or experience thinning of my hair.  My thought process was…why should I pay for a haircut when it’s just going to fall out?  So I haven’t gotten a haircut during this time and it looks ridiculous.  Janie and I think my hairstyle is similar to Kurt Russell’s in pretty much any of his movies.  The funny thing is I went from a No. 5 guard, buzz cut, to Kurt Russell and many people that see me don’t know why I haven’t gotten it cut.  I told myself I would get it cut when I’m cancer free.  Now I’ve found myself strangely attached to my hair and how it’s a symbol of rebellion in my fight with cancer.  Every time I see myself in the mirror or a person comments on it, I think about all I have experienced during the past nine months.

I do not want to go back to living my life the way I was before being diagnosed.  Cancer turned my life upside down and I never want to lose the clarity my mind has now.  I notice and appreciate everything I see and I know I would not have this perspective unless I went through something traumatic.

Early on in my treatment I befriended John, he is young and has the same diagnosis and is now 4 years in remission.  In a discussion of how grateful and blessed I felt and the clarity I had, he shared this with me…I can experience what someone would call a “bad day” and think Wow! I am so glad to be alive and have this bad day today.  What a thrill!  Suddenly, your “bad day” starts to turn around.

I like this because it’s an example of what I mean by clarity.  I know life is stressful, but it is also beautiful.  When I start seeing more beauty in life, I am less stressed.  I hope to hold onto this mindset forever.

http://btousey.wordpress.com/2010/07/15/peak-decades-kurt-russell/

Reno Hightower

Surgery Tomorrow

On Thursday, October 24th, I will have my colon resection surgery, which has been my dream from the beginning.  I feel blessed because I have had the best-case scenario for my recovery.  In the beginning, I imagined this moment would be the end, but I now realize there is no end.  This chapter is near the end, but cancer has changed every facet of my life and is ever present.  Over the past nine months, I went from being diagnosed with Stage IV cancer to hopefully being NED (no evidence of disease) after this surgery, which will truly be a blessing and a miracle.  God is great and so are all of you who have supported my family and me over the past nine months.  We are forever grateful for all of the love and support.

Throughout this experience, I have found and met people my own age with similar diagnoses and I would like you to keep them in your thoughts and prayers:  Nick, who is fighting cancer and has a young family, Karen, who just completed her first chemo treatment and is kicking butt, and Leah, also with two young children, is fighting cancer with such grace. Thank you.

A year ago today…

Thank you for all of your prayers and support.  My surgery was successful.  During the five-hour procedure, the doctor removed three tumors, many lymph nodes and my middle lobe.  The procedure was fascinating.  They collapsed my right lung and the surgeon went over my entire lung with her fingers looking for possible tumors which were too small to be detected on CT scans.  The pathology reports came back with two of the three tumors being dead and the third tumor was cancerous.  All of the lymph nodes came back non-malignant.  Recovery has had its ups and downs.  During the first three days in the hospital, I had an epidural that made the pain tolerable.  Once the epidural was removed, I was in a lot of pain.  I’m feeling much better and will be going back to work next week.  One procedure down, and one more to go.   On October 24th, I’ll have a resection of my colon.  Please continue to keep my family and me in your prayers. 

When I was younger, birthdays were about toys and slumber parties.  As I grew older, birthdays were more like milestones, and after I reached 21, birthdays were a day to reflect on what I wanted from my life.  This Thursday I turn 37, and when I think back to this day last year, there was much excitement in my house.  My youngest daughter, Anabel, was born on September 27, 2012 (the day after my birthday).  What an amazing gift.  I feel indescribable joy when I think about her birth.  As I watched my daughter Katie hold Anabel in the hospital, I felt my life was complete in every way.  At this time last year, we were a beautiful family, full of love, and unaware of what was in store for us.

Early on, during my fight with cancer, I realized things happen for a reason and that there is a bigger plan out there.  If my cancer had been found earlier, Janie and I would not have considered having more children.  Anabel has been a blessing throughout this journey.  Anabel is our little miracle baby who has made a beautiful family full of love, more beautiful and more loving.  Now for every birthday I will reflect on how fortunate I am and what a blessing it is to celebrate another birthday with my family.  I will sorely miss eating an entire lemon cake with lemon frosting.  I can’t eat cake because of my dietary restrictions; I would usually eat the entire cake because no one else likes it.

Katie holding Anabel for the first time.

Update by Janie

Kevin will be having two surgeries this fall.  Please keep him in your thoughts and prayers.  On Wed. Sept. 11th at 8 am,  Kevin is having surgery on his right lung to remove three tumors.  The surgeon is confident that she can remove the tumors.  She will need to remove the middle lobe (the smallest of the lobes) and said that Kevin will lose about 7% of his lung capacity.  Then 5 weeks after lung surgery he will have surgery on his colon to remove the site of the original tumor with about 1/3 of the colon.  Kevin still has a battle to fight.  He is so brave, strong and positive.  We believe that with love and prayer amazing things will happen.  We thank you and love you.  We had the time of our lives this summer filled with family, friends and fun.  Kevin will post about it soon.  

Finding Faith

If you have ever been to my house in Virginia Beach, you would have noticed more pictures of Jesus and Mary than ones of my brother and I.  I cannot talk about my faith without mentioning my mother’s strong faith.  When I saw my mom after being diagnosed, she looked me in the eyes, put her hands on my cheeks and said, “I’ve been going to church everyday for 30 years for this moment.  God loves you.  You’re going to be ok.”

Part of my mom’s unwavering faith came about while she was pregnant with me.  At first, my mother was unaware she was pregnant and a doctor prescribed her medication which could cause severe birth defects.  Later during the pregnancy a doctor told my mom that there was a strong chance that I could be born with birth defects.  He provided her with the option to terminate the pregnancy.  My parents went home and prayed and continued to pray throughout the pregnancy.  Thankfully, I was born without any birth defects.  So I guess God has been looking out for me since day one.

My mother showed me the importance of helping others through her own actions.  Many times I would accompany her to help volunteer at thrift stores, food banks, and soup kitchens.  I saw first-hand how valuable those interactions were.  Through those experiences I found joy in helping others and learned the power and simplicity of being nice.

Even though I grew up in a Catholic family that went to church every Sunday, I wouldn’t call myself a devout Catholic.  As a boy, my favorite things about church were the free doughnuts after mass.  As I grew older my behaviors didn’t change too much.  During my high school years, instead of going to church, my brother and I would go out for breakfast, check the waves at the beach and stop by church after mass to pick up the weekly bulletin.  We would show the bulletin to our mom as “proof” that we went to church.  Since being diagnosed, I’ve made my faith more important by changing my schedule at work to allow time to attend daily mass, doing pro-bono psychotherapy for fellow parishioners, and joining the parish council.

When I heard the words “you have cancer” my mind jumped straight to thoughts of death and dying.  The words “miracle” and “faith” are what get me through the hard times.   I now see daily miracles that I overlooked before in life.  Now that I am facing death I think about an afterlife and wonder about what it is like.  Especially during the season of Lent, I would get anxious about walking into church everyday because the message would focus on either death or healing (I preferred the healing readings).  Whenever I am feeling down, I pray and something good always happens to cheer me up.  Like a favorite hymn sung in church that reminds me of my grandmother, a sermon that speaks to me, vivid dreams of loved ones who have passed away, friends (some that I haven’t talked to since grade school or college) calling and texting me that they are praying for me and telling their friends to pray for me, random Rocky meanings, or my daughters doing something that sparks joy and hope.

I’ll always cherish this memory from when I was newly diagnosed.  I was changing Anabel’s diaper and I became overwhelmed with sadness because it hurt to think…I might not be there for my children.  Will Anabel remember me if I die?  I began to cry on her belly.  She reached for my head in a comforting way, almost like expressing it’s okay, you’ll be okay.  Moments like this I can’t explain and don’t care to because it’s exactly what I need at the time.  I’ve experienced these occurrences many times and it’s impossible to describe the inner peace it creates.  I believe God holds close those that are suffering no matter the outcome and I know he’s holding me close.