In our journey through Cancer, Peter & I both felt very compelled to share with you all. Some people while battling illness, disease, depression choose to go inward and become silent, some choose to become angry, some people just don’t know what to do… others like us find our voices. We wanted to share our story not because we have a desire to share personal stuff with the world but because we both feel deeply compelled to reach out a hand to someone… anyone in need. The journey through a deadly disease is mind boggling & overwhelming, its heartbreaking and soulful… in the deepest sense a spiritual journey into learning deeply who you are and what makes you tick. There are periods in many people’s life that are called “ah ha” moments. It may sound strange to some.. but the journey inspires a deeper understanding, a peace amid the storm. Peter’s brother Steve used to say; “ You just do the next thing”. There are many next things that I hoped to help readers know and understand because the journey through has many pop up surprises.

-Finding a doctor that not only listens but hears, understands, is patient with questions and truly cares enough never to let you feel like a number is your #1 priority!!! If you can’t click check next to each one of those … you are probably not sitting with the right doctor.

– There is no such thing as routine cancer! Every type of cancer has different biological makeups of proteins, deletions & even shifts to chromosomes. Don’t settle with a routine treatment. There are many incredible new cutting edge therapies available for many types of cancer!! Connect with cancer support groups to find where all of the newest treatments for your type of cancer are happening!! Chemo used to be the only option.. but it is NOT the only option any more!! Do your research!!!!

– Advocate advocate ADVOCATE for your self, your health, your care!!! Did I mention advocate? Doctors are practicing medicine.. key word practicing… ask questions, research, you want the smartest, brightest & one open to the newest ideas & forms of treatment.

– Hospitals have patient advocates, ask for one!! A patient advocate helps patients & their families negotiate the complicated path of coverage & loopholes as well as outside services to help with co-pays, travel, lodging & assistance expenses. Many of them will actually do all the correspondence with insurance companies taking that off your plate.

– Connect with a support group in your area. We were led to LLS ( Leukemia & Lymphoma Society), they were incredibly helpful!! They helped us wade through medical jargon, financial assistance with medicines, expenses, support. They can even connect you to patient volunteers going through the same treatments with the same disease, just to talk to so you know you are not alone. We also found out that had we not been at a hospital that had a clinical trial for Peter to take part in they would have found out where one was. This is what these groups do, full time… look for ways to help YOU!!!!

– Insurance.. ugh my head… you will spend more time on the phone fighting with them for coverage, for messed up billing, for approvals than you will anything else!! I’m not kidding, and I’m so sorry!! The last thing in the world anyone with cancer or anyone who loves somebody with cancer should have to do is this…. but brace yourself!!! Health insurance in this country is a horrible mess!! Greed is incredible.. and they simply don’t care that you are facing life or death… all they care about is their bottom line.. truly.

– That being said.. just know, and in however you have to come to a place of peace about it; you will be in debt for the rest of your life… it is what it is. It sucks but you can not let it consume you!

– People won’t be able to handle the truths. This includes family, friends, acquaintances, strangers..Don’t keep banging on closed doors, let it go.

– But that being said… incredible people will appear, angels will surround you. You will learn that family is not always blood.. but who stands with you, holding you up is.

-You will find a deep strength, peace, vision, quest, moxie, power, resolution, fire, soulfulness & spiritual journey in all of it.

The day you walk out of treatment ( even as a caregiver), life does not magically go back to “normal”… because there is a whole new yet to be discovered “normal”. There are many new and unexpected twists and turns along that road as well. I think people who have never been through personally ( in whatever capacity.. patient, caregiver etc) can not even begin to understand the enormity of that part of the journey any more than they can truly understand the journey itself…. Months of goal oriented deadlines and dates in a life threatening situation becomes your life… and then when that part of the journey ends… you have been forever changed in every possible imaginable way. Who you are as a person is never put back exactly the same way. Your journey has tacked life & death, spirituality, relationships, what is important in this life and what truly is not. You can’t go backwards. Some people can’t move forward, they honestly can’t… they are shell shocked.. PTSD is REAL!!!! Every ache, every pain, every sniffle could be a reoccurrence ( in the mind of a survivor or caregiver). In Peter’s case his doctor says his cancer will need to be treated again someday. We have made many changes in our life in the belief that maybe that won’t be the case. It’s always there just lingering. For those of us that strive to move forward… it is a whole part of the journey that isn’t discussed enough. We feel like our perceptions & views are wider, there is a deeper understanding in knowing that nothing is guaranteed. Every day is truly an incredible gift. What are you going to do with that gift? It’s kind of hitting the re-set button in life. PC & AC (pre cancer & after cancer)… Life as you once knew it is forever changed… but that doesn’t mean it has to be a bad change. For many survivors or caregivers it marks the beginning of a directional life shift in every area in life. Striving for peace at whatever the cost. A re-evaluation of where you were versus where you now are. Jobs may change, status may change, people may need to come or go from your life, many things in life may need to be dropped and others picked up, that voice in your gut gets louder. Maybe that treadmill in life isn’t what it’s all supposed to be about. This experience has taught me so much. I know my path now clearly is one of following passions and being at peace. Being a caregiver through a cancer journey is so much. It’s so important to take care of your own self too. It’s easy not to. It’s easy to become overwhelmed and just curl up, or babble on incoherently. Peter was very clear about the need for me to find my space to breathe & heal also. He needed time to go inward and work on his own healing, as did I. Reiki was a Godsend for sure for me. Today I am blessed to be able to work as a volunteer one day a week in a hospital near us sharing Reiki with patients, caregivers and staff. I love going in to serve others in need. The joy that I receive from helping & serving others is beyond beautiful.
We both have had many people contact us through this blog asking us for guidance or even a listening ear, we are both humbled and honored to help in any way we can. In life, these times under fire refine us, define us and make each one of our lives unique. Everyone has something going on in their life. Be kind to each other. Sometimes the battle isn’t visible from the outside ( Peter didn’t lose his hair during treatment, he didn’t look incredibly sick most days), depression isn’t visible, many illnesses are not visible. Life is a journey, we are all just walking each other home… Never hesitate to reach out if you need a hand!! xo

Our greatest (life) teacher has got to be adversity or traumatic events. How often do we hear Actors, Athletes or musicians talk about their road to fame which includes detailed stories of child abuse, abject poverty or a serious life threatening trauma? It is these very events that can motivate or paralyze. There comes a point in their life where they choose which it will be: push through and beat the odds or let it consume them.

Fighting stage 4 Chronic Lymphocytic Leukemia was a tough life teacher for me. Toughest battle to date. There were days when I wasn’t sure I would ever have a life even close to what I had pre-treatment. I was physically and emotionally drained. I had a very physically demanding job that I struggled to even get through a half days work. I enjoyed an active social life but couldn’t muster much energy past dinner time. Added to that was emotional battles. While I expected the physical battles, the emotional ones were unexpected and unpredictable.

Soon after diagnosis was the first punch in the stomach. I quickly realized who my real friends were. Even some family members fell silent and grew distant. I don’t know what was going on in their lives, but I’m sure they felt they had valid reasons. I know myself, in the past, I had felt the urge to pull away from my brother in his final days. I didn’t want to see him suffering like that. I didn’t want my last memory of time with him to be like that. I wanted to selfishly hold on to the good times, the laughs we had together. To remember his lifeless, frail body in a hospital bed… no. Didn’t want or need that visual. With much encouragement from my wife, I didn’t run. I stayed. I offset that visual with the memory of holding his hand and kissing his head one last time. I remember all we exchanged without words in those final moments.

I can’t in clear conscious really fault those that pulled away and fell silent. I don’t mean to sound vindictive or spiteful when I say, I remember them and what they did or didn’t do. I had expectations that were, surprisingly, not met. In contrast, there were friends and new friends that really came into our lives with such love and support. I remember them too.

Although it’s been a few years now, these life lessons have stuck with me. Some who left in my time of need for support have come quietly back in now that the dust has settled. While I welcome them, I see them in a much different light knowing where their boundaries lay.

My adult children are another story. I have not spoken publically about their silence and lack of support in my battle, but the emptiness I feel even to this day is worse then the pain of the cancer treatments. My own flesh and blood have been estranged for several years now. I have reached out to them on several occasions, even brought my daughter to one of my last infusions thinking it might spark a reconciliation or re-connection.  What is my lesson here? What is this pain supposed to teach me?

It would seem that I still have more questions then answers.