In the moments and indeed the days, following a diagnosis of osteosarcoma, bone cancer, one can expect feeling uncentered, wobbly and entirely as though you have fallen through Alice’s looking glass. It is a trip that you cannot prepare for until you have arrived in the unknown land of such a diagnosis. Know that many have endured the journey ahead of you and contributed to this BLOG, as well as MIB Agents book, “Osteosarcoma, From Our Families to Yours” on how to prepare and cope from the perspective of patient, caregiver and spouse.
Many patients and families are relieved to have a diagnosis at last. For the patient, it is a vindication that their pain is real and more than the pulled muscle, strain, or any of the many misdiagnoses that many patients face before arriving at a place of understanding of what is really happening in their body.
Know that no one is to blame. According to the American Cancer Society most known risk factors for osteosarcoma are unavoidable. Other than radiation therapy, there are no known lifestyle-related or environmental causes of osteosarcoma. There is no way to protect against this cancer.
Your best resource for information is your healthcare team. Social media, the internet (aka Dr. Google) and online statistics are not always accurate or helpful when it comes to medical information. There is only one patient like you - not all rules and outcomes apply to every patient. Reading other patients' family stories about coping with osteosarcoma will help, but as you know, your family, your ‘patient’ is unique.
Whether you are the patient, parent or caregiver, an osteosarcoma diagnosis can be daunting and frightening. One excellent resource is a therapist for each member of the family. A therapist is a third party where each person can speak freely without fear of causing pain.
Jennifer offers this suggestion: “One day at a time" and at the very worst it was "one minute at a time." I could handle one minute and if I could handle one minute, I could handle another and another.”
You will certainly find yourself learning the language of treatment. Be sure to ask questions, and accept written explanations and brochures, as the time spent in a chair in your doctor’s office can be a whirlwind of information. It is recommended that you bring a notebook or recording device (ask permission to record) so you can more easily digest the information needed in a calm, quiet place.
It is common to have a caregiver team naturally gravitate to different and equally valuable and important roles. Typically one is the researcher and the other is the hand-holder. Honor and respect each other’s place and importance.
Sydney suggests: “Video games”. This is common for Osteosarcoma patients, as they are unable to be active during treatment due to physical limitations as well as exhaustion due to chemotherapy and sometimes, radiation.
Sydney adds: “The best thing anyone has ever done is just listen, not pity me, not try to fix things.”
CAREGIVER PERSPECTIVE: Faye: “(My husband) focused on fun things and always had a project on the go, even when he was having transfusions as a result of neutropenic sepsis. He shopped a lot, lol…. Laughter was important in our house. Even through the stress and pain we were always cracking jokes or being sarcastic.”
Anxiety over scan results is common.
Ray offers: “What has helped me most with scans is "whatever is in my body is already in my body. whatever scans will show has already been in my body for weeks or months. Nothing I will learn will be new, there is nothing I can do about it, so there is no usefulness to stressing"
Recovery from osteosarcoma’s treatment and recovery is long and often unpredictable. If you are short on patience, this is a space you will struggle with! It involves a physical and emotional recovery. Waiting for bone to regenerate and grow is slower than watching grass grow or paint dry! As many have shared; “This is a marathon, not a sprint”. This is true in every way.
CAREGIVER PERSPECTIVE: Karrie: “Document EVERYTHING!!! Do NOT rely on your memory, you are going to be exhausted. I had 2 notebooks and I took them to all appts. The notebook allowed me not to have to think about it. (The medical team) absolutely LOVED it!! It was hard, concrete data that I was able to give them.”
Many, if not all of your relationships will change. Some relationships fall away while others strengthen and deepen. There are people whom you believed would “show up” for you when things were tough that simply do not. This is painful, yet be assured, it is also a blessing, a gift of cancer that you know for sure who ‘your people’ are. More than who doesn’t show up, there are those whom you never expected express care, concern and love in ways great and small.
PATIENT/AUTHOR PERSPECTIVE: Ann “It was painful to realize people I loved didn’t show or express love when I was suffering greatly. Meanwhile, there were many more in their place who meaningfully shared compassion and love in unexpected ways. There was a moment I decided to switch my focus from those who were not there for me, to a great appreciation for those who were. To not make this mental shift was to dishonor those who were expressing love.”
PATIENT PERSPECTIVE: Sometimes when I did confide in my parents, they would just tell me "not to worry about it" which.... while well meaning, was deeply unhelpful to me.
Know that there are survivors, resources, help and hope.
*No two osteosarcoma patients are the same, therefore there is no substitute for the expert care of your medical team. This is not meant to replace the guidance of your oncology team. It is meant to share resources, information and support.