Change

A few years ago my best friend went to the dermatologist for a suspicious spot on her thigh. It was melanoma. Thankfully, the doctor was able to successfully remove all of the cancer.  When I invited her to participate in our local Relay for Life survivor activities her daughter quite seriously replied, “Mom, You can't go to the survivor dinner you didn’t suffer enough.”

My dad was diagnosed with prostate cancer about five years ago. Because he was in his late 70’s the doctors took a conservative approach to treating him. After a few months on oral medications his cancer was gone! Cancer for him, though scary, I’m sure, was a pretty benign experience.

We know that cancer is really just a label for many varying diseases; all serious, not all life threatening. I was one of the “lucky ones” who was able to experience ALL that cancer has to offer: chemo, radiation and bone marrow transplant; complicated by graft vs host disease, and many other challenges. Spanning 3 years, from the start of treatment until I was well enough to work, my recovery was exhaustingly long.

 Cancer survivors like myself come out on the other side of this grueling experience extremely changed people. Some changes for the good, some not so good.

How did I change?  Well for starters, I felt very different from everyone around me. Living in a very small world consisting of my hospital room, my bedroom and my couch for many months left me feeling like the big beautiful world was going on without me. I had been reduced to spectator status. I so wanted to be a participant in life, but alas, I was not able. A few things happened as a result of this cloistered life. Maybe you experienced this too…

I learned to appreciate really small things that others never took a second look at. Staring at a vibrant green tree, as I drove by in the car, made me really happy. Stopping at Culvers for cheese curds on the way to my monthly doctor appointment in Milwaukee was an entertaining outing. Being able to sit through one of my son’s high school basketball games and finding the energy to converse with another parent was a major accomplishment.

 As time went by and my recovery continued my world began to expand.  Eventually, I was living a full life. Still, I found my daily accomplishments meant more to me than most people. I felt a great sense of accomplishment after a routine activity like spending a day at work. My life was filled with a prevailing sense that each day is a gift and a full, busy, active day, for me was the greatest gift; a daily reminder that I am finally back in the game!  

Another change…I am always cognizant that today could be my last day on Earth, and thankful, when it isn’t. As cancer survivors we have faced death square on. We know with every ounce of our being that tomorrow is guaranteed to no one. I concluded awhile back that all of our lives are fragile but those who have never had a near death experience seem to live with a false sense of confidence in their longevity. The reality is this: the hypothetical cancer patient who has been given 6 months to live may live longer than his healthy, young neighbor who will surprisingly get hit by a bus and die tomorrow. Life is random and unpredictable. Cancer survivors get that.

 Throughout my cancer journey I had days of great faith, clinging to God with confidence as well as days filled with nonstop tears due to consuming fear. Ultimately, I desperately wanted to recover; for my husband, my kids, my parents, and ofcourse, for myself. I wanted to stick around sweet earth as long as possible, which leads me to another way I have changed… I think about death a lot. Maybe not as much now as I used to, but more than healthy people, I’m sure. I can’t help it. I won’t bore you with all my deep death thoughts, let’s just say when you’ve stared death in the eye you do not quickly forget…I hate this. Mostly because I know that as mere humans we will never fully understand the circle of life. Yes, death is a part of life; the most mysterious part, the part we can’t understand. So why was I wasting energy trying? Good question….wish I had the answer. What I do know is that for me the solution is to try to redirect my thoughts. Whenever I find myself focusing mental energy on what God clearly chose not reveal, I try to focus instead on want He HAS revealed.

He is in control.

He loves me and will to take care of me.

He knows my thoughts and concerns and understands.

He has promised me eternal life with Him.

He wants me to trust Him with my future.

Yes, cancer changes us…for some a little, for others a lot. With introspection, prayer and wise counsel we can confidently move into our new life knowing that who we are at this very moment is not random, but planned by our Heavenly Father, for His purposes, before the foundations of the Earth.

Psalm 139: 13-17

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful,  I know that full well. My frame was not hidden from you when I was made in the secret place,
when I was woven together in the depths of the earth. Your eyes saw my unformed body;
all the days ordained for me were written in your book  before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them!

It's not about me...

Keys to happiness after cancer: #1… It’s not about me!

 I admit it, when you have cancer it IS all about you…we go into self-preservation mode big time. We can’t help it; we have to. When I was sick SO much attention was lavished on me. While hospitalized I was daily asked about my pain level by numerous health professions. Everyone cared about me. I was given a buzzer and was able to summons assistance at any time of the day, 24 hours a day. Family and friends sacrifice their time to stay with me, feed me, bathe me, make me laugh… Though a bit twisted, the reality is cancer patients become really popular.  Everyone is at our beckon call. We receive constant accolades about how strong we are, how inspiring we are ...If I wasn’t so concerned about dying, I might have really relished the new found fame!

 Then I got better…Not only did I recover but I moved 6 hours away. Guess what? No one in my new life “knew me when”…They never saw my bald head or my emaciated body. They never experienced my morphine induced hallucinations, they had no idea that we had to sell our home to pay my medical bills, they never saw the port hanging out of my chest or the pill box filled with over 40 daily ingestions. Bottom line, they had no idea how “special” I was. One day someone was not very nice to me. I thought, ” how can they be mean to me, don’t they know what I’ve been through?”  

With time, and much introspection, I realized I needed to re-focus. I needed to move towards using what I’d been through to help others. Thankfully, I was able to secure jobs in social service agencies which afforded me many opportunities to become “others focused”.  

The opening line of the best-selling book “The Purpose Driven Life” is “IT'S NOT ABOUT YOU..."  I highly recommend reading it if you are struggling to find your place in the world. Rick Warren’s words spoke volumes to me about my need to move past my cancer experience to a place of emotional healing and a realization that even if I’m not “special” anymore I still have an important purpose.

To my surprise, I found that post cancer I am actually better equipped to empathize with the hurting in my world. I understand pain, I understand the panic that comes when life's circumstances spiral out of control. I understand paralyzing fear. I understand hopelessness. I may not be special anymore but I AM better equipped to serve others, which ultimately makes me my happiest.

Quotes from ― Rick Warren, The Purpose Driven Life: What on Earth am I Here for?

 “Experience is not what happens to you. It is what you do with what happens to you. Don’t waste your pain; use it to help others.”

 “Other people are going to find healing in your wounds. Your greatest life messages and your most effective ministry will come out of your deepest hurts.”

“Humility is not thinking less of yourself; it is thinking of yourself less. Humility is thinking more of others.”

My Story

In October, 1998 I was diagnosed with Multiple Myeloma ( bone marrow cancer). I was only 39 yrs. old. Because of my age I was told I probably did not have Myeloma- My worst fear was confirmed with a bone marrow biopsy and a 24 hr. urine collection. Of course, I was devastated. Interestingly, my first thought after the doctor told me was deep remorse for the pain I knew I would be bringing to my family.

 At diagnosis I had 16% plasma cells, with IgG Kappa and Kappa light chains, and was Durie-Salmon stage 2A. I also had a few small lesions. My doctors did not hesitate starting treatment. One month after diagnosis, I began VAD chemotherapy. I received 4 treatments with excellent tumor reduction. I was also referred to Dr David Vesole at Froedert Hospital in Miwaukee, Wi. Dr. Vesole, a world reknown M.M. specialist, was upbeat and positive. My optimism increased after meeting him. 

 3 mos. later I received a mini-bone-marrow transplant in Milwaukee. All of my 5 siblings were tested and two of them were perfect matches. How fortunate I was! My 32-year-old sister was chosen as my donor. In May of 1999, ready to conquer and evict the cancer from my body, I entered the hospital. After intense total lymphatic radiation my sister donated her stemcells via apheresis. I received high dose chemotherapy and then received her “gift” via an I.V.

I was hospitalized for 6 weeks. My family ( my husband and parents)  moved into a house rented out by the hospital. They were with me 24/7. When I was doing well I was allowed to go to the house for short visits. My transplant was not easy. I feel like I experienced every complication possible. An E.Coli infection nearly took my life. Miraculously I survived failed engraftment (a second donation was required by my sister), heart failure, Ecoli, and Graft vs Host disease. I have been in remission since my transplant 13 years ago. 

my first 5K with my brother and sister

quite an accomplishment for me!

For almost two years I was required to take it easy, was not able to work and very susceptible to infections. Slowly, I recovered…one day at a time. Did I recover to my pre-cancer health? In some ways I am healthier now than I was then. I exercise more, and am more health conscious. Has cancer taken a toll on me? Of course. I feel like I aged prematurely- I have already had cataract surgery in both eyes, I have osteoporosis, my activities are sometimes limited by back pain (I am currently battling sciatica), I have low tone hearing loss due to nerve damage from radiation and I experienced chemical menopause at age 39. Despite these “challenges” I can work, travel, run, garden and shop, shop, shop- all the things I love! 

I have been married to my college sweetie for over 32 years and am mom to two amazing adults, Nic and Bree; as well as a "just as amazing" daughter in law, Keely. What a blessing it was to be there for my kids graduations (they were 12 and 14 when I was diagnosed), the birth of a great niece and nephew, Two dream trips to Italy, and my son's wedding! I truly am "Blessed Beyond Measure"

So proud of my amazing family!