Tami's Journey: Advocating for Life

In June 2024, Tami faced a new and unexpected battle: a diagnosis of Dedifferentiated Chondrosarcoma, a rare bone cancer. This wasn't Tami's first encounter with cancer; she

had just celebrated her 10-year remission anniversary from ovarian cancer. Her family has a history of Osteochondroma, a hereditary condition causing benign bone tumors. While

her family members all have this condition, none have ever developed cancer from it. Tami, however, wonders if her previous chemotherapy treatment for ovarian cancer might

have played a role in her recent diagnosis, though doctors are still unsure of any direct link.

The first sign something was wrong came one night when Tami woke up with excruciating shoulder pain. An avid golfer, she initially dismissed it as a sports injury and made an

orthopedic appointment. At the appointment, the doctor focused solely on a pre-existing osteochondroma on her arm, completely overlooking her shoulder blade. An X-ray was

taken, and an MRI was or

dered.

It was after this appointment, when her boyfriend put his arm around her, that they discovered a large lump near her shoulder blade. The tumor was so substantial it made her

shoulder appear dislocated, a detail the first orthopedic doctor had missed just days before. Tami immediately called the office to ensure her shoulder blade would be included in

the MRI. A follow-up appointment was then canceled, with the assistant stating they couldn't handle her case, and she'd have to wait for the doctor to return from vacation.

Unsettled by the lack of information, Tami accessed her online chart and saw the MRI results. Acting quickly, she sent them to the office of the OHSU surgeon who had previously

treated her son for osteochondroma. The very next Monday, the surgeon called her directly, emphasizing the urgency of the situation: immediate surgery was needed.

The initial biopsy indicated a Grade 1 tumor, but during surgery, which involved the removal of 90% of her shoulder blade, they discovered the center of the tumor was a more

aggressive Grade 3. This meant Tami would need to undergo six rounds of chemotherapy. She is now closely monitored every three months for recurrence and metastasis to her

lungs.

Tami is incredibly grateful for OHSU's swift action. She firmly believes that had she waited for the original doctor's return and referral, the cancer might have already metastasized.

Throughout this challenging time, her friends, neighbors, family, and boyfriend have been her pillars of support. She says she “was blessed to have a large tribe”.

Life after surgery and chemotherapy has presented new obstacles. Tami now has only 50% use of her dominant right arm and faces a slow, careful recovery to build muscle

around her shoulder blade. There's a significant risk of permanent, painful nerve damage, which could even lead to amputation, if she doesn't proceed cautiously. Becoming

disabled overnight has been difficult, and she struggles with neuropathy, making sleep elusive. As she returns to work, she also finds herself contending with "chemo brain."

Despite these struggles, Tami is immensely grateful to be alive. She's even taking steps to learn to golf left-handed, a testament to her resilience. Her experience has instilled in her

a powerful message: "You have to advocate for yourself." She believes this self-advocacy saved her life. Tami also encourages everyone to remember to be kind to their care

team, acknowledging that "they are doing the best they can."