Richardc's Journey with Squamous Cell Sarcinoma
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 4 Radiation Icon Radiation
- 5 Side Effects Icon Side Effects
- 6 Celebration Icon Celebration
- 7 Decision Point Icon Decision Point
- 8 Other Care Icon Other Care
- 9 Other Care Icon Other Care
- 10 Decision Point Icon Decision Point
- 11 Other Care Icon Other Care
Survivor: Head & Neck/Throat Cancer > Salivary Gland Cancer > Squamous Cell Sarcinoma
Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 9 years ago, Male, Age: 64, Stage IVA
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Diagnosed
Oh No
When originally diagnosed, I went from a biosy of the lymph nodes in the side of my neck and the doctor thinking it was not cancer, to finding out four days later that it was cancer. Once we got past the initial shock, then it was question of what type of treatment was recommended.At that point, the doctor could not give a prognosis. He stated it depended on how far the cancer had spread. If the cancer was localized, I had a better chance than if it had spread to my brain. Only surgery and the pathologists report would determine my outlook.
Surgery
Procedure or Surgery
Some of the ong term effects of my "radical neck dissection" were damage to the Accessory nerve. Between the damage and long term recovery, I experienced a frozen shoulder that took physical therapy to overcome. I have persistent numbness in my little finger and ring finger that is attributable to damage to the ulna nerve.
Chemotherapy
Drug or Chemo Therapy
I usually listened to music on my mp3 player and read the newspaper to keep me occupied during my 4 hour round of chemotherapy. I had minimal side effects on the first day following chemo, but the rebound effect of steroids wearing off usually hit on the secon day after chemo. I would be a mess by the weekend and begin to recover the first few days of the week until chemo bevan again. This was usually on a Wednesday. It took several rounds of chemo before the doctors figured out why I was having these problems. They ultimately ended up prescribing oral steroids to counteract some of the side effects.
External radiation
Radiation
Being under "the mask" I found out how claustrophbic I really was. I was scheduled for 7 weeks of daily radiation or a total of 35 rounds. This was performed concurrently with the chemotherapy. Initially, food started to tasted like cardboard and eventually metal. By the middle of my radiation treatments, I was having difficulty swallowing. Different mouthwashes and pain medication allowed me to swallow some foods. It progressed to the point that I could only swallow liquids and had to depend on the feeding tube inserted through my stomach to get sufficient calories. I strongly suggest having the radiation doctor put a "hole in the mask" where the mouth is to allow fresh air. It helped the radiation process. Also, get a feeding machine instead of trying to do this manually.
Chemo brain
Side Effects
Side effects included-difficulty swallowing (1 of my tonsils was removed), radiation burn inside my throat and on the outside of my neck, decreased appetite, thrush, fatigue, thinning hair (I never lost mine), excessive fatigue. I had to take a leave of absence four weeks into my treatments. 75% of the way through my treatments, I was hospitalized. I was confused and finally admitted to ICU. My weakened immune system ahd allowed a MRSA infectin to set in. This resulted in memingitis, loss of ability to speak and lack of cognizance of the time that had transpired. After two weeks, I finally was cognizant of my surroundings. The best part - I could finally tell my wife I loved her. For two weeks, She wasn't sure if I would come home. I was diagnosed with memgiitis, MRSA infection, Sepsis and respiratory failure. I spent 4 weeks in a specialty hospital and 6 weeks in a rehab center. The attending physicial at the nursing home gave me a hopeless diagnosis. The doctors diagnosed me as terminal and wrote in his notes that his prognosis was " patient is terminal and will never return to work" I had limited use of the leg and arm on the side of my surgery. Partly attributable to the effects of the meningitis.
Vanderburgh County Relay for life - July 17, 2010
Celebration
This was the anniversary of the date that I was celebrated my release from incarceration! We celebrate the day I went home from Rehab to begin my recovery. This is the first Relay for Life I had participated in. It will not by my last! I walked as many laps as I could and rested when necessary. The luminaria ceremony was as emotional as any I've attended.
Orthopedi surgeon's diagnosis of my shoulder
Decision Point
He stated the bone marrow in my collar bone was destroyed by the radiation and I would not regain use of my arm. His only recommedation was to remove the collar bone (a procedure he had never performed) and he had no prosthetic or implant to put in its place. My wife and protector kept pushing for a second opinion. I was finally referred to an orthopedic oncologist at a larger hospital. Fortunately, he was able to perform the surgery to restore blood flow to the marrow, eradicate the infection and give me hope!. This was my decision point. It was also the first time I realized - there is hope. The dread and despair that preceded this was unimaginable. I didn't think I would ever be able to work again. What a turning point in all I had been through.
Home care
Other Care
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Other Care
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Decision Point
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Other Care
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