Learn everything you can!!!
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