Ilenealizah's Journey:

Patient: Breast Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Female, Age: 53, Stage IV, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    over 4 years ago
    Ilenealizah's Avatar

    Everything changed overnight

    Oh No

    One night severe abdominal cramps seemingly much like bad food poisoning, my partner of eight years and fiancé demanded I get into the car and go to the hospital. I'd been doubled over, tears bursting from my eyes for about an hour - the next day I woke up in a bizarre alternative universe. You have metastatic stage IV breast cancer and ascites build up in your abdomen. Everyone looked stunned. Not her! She's fine. She takes care of herself. Look at her - she's going to be 50 in June, she doesn't look anything like 50, let alone like someone with a doomsday prognosis. Sword of Damocles over the hospital bed, the morphine drip morphing everyone's words, the doctors, tests, two hospitals fighting over whose patient's money the other stole by keeping me in their bed. Truly this wasn't a fairy tale and Goldilocks felt uncomfortable in any hospital bed. Inescapable, unbelievable, incurable...normal life as I once knew it (whatever normal means who really can say) abruptly ended as fatigue, sadness and finally a wholly reinvented me took over and determined after five days hospitalization, five liters of fluids removed, five days of struggle to work with insurers, five more to become a patient of an oncology team, and five weeks now into my chemo and hormone treatments all my doctors can say is...wow. My fiancé struggles with the horrible notion of my death and we've begun to get back to one another. He reacted by ignoring me and admitted feeling a resentment of which he felt ashamed. Lonely, scared, angry, tired, moody, but generally motivated to live, I say not me, no way. And sure as I tell anyone who's reading this: My full body bone scan shows no bone mets My tumors shrank from 8.1 to 5 and from 3.2 to 1mm There's no evidence of anything in any lymph nodes My ascites has not returned I am exhausted My brain is completely overtaxed in every way My activity level isn't but 50 % of what it once was - on good days In the morning I wake up and say over and over not me, I'll beat this thing best I can and look how beautiful my honey is sleeping silently next to me, my Balinese cat Simon licking my nose - mommy time to get up and feed me. It's still a nightmare and admittedly and despite the "best of the worst case scenarios," I want my life back.

    2 Comments
  2. 2
    over 4 years ago
    Ilenealizah's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  3. 3
    over 4 years ago
    Ilenealizah's Avatar

    Chemo brain

    Side Effects

    Blah! Words are my life. Huh? Why can't I remember why I'm in the garage!

    0 Comments
  4. 4
    almost 3 years ago
    Ilenealizah's Avatar

    Lumpectomy

    Procedure or Surgery

    I'm about to have a lumpectomy although I'm stage IV with bone mets. Score one for being your own best advocate.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  5. 5
    almost 3 years ago
    Ilenealizah's Avatar

    Lumpectomy

    Procedure or Surgery

    Going to get another breast MRI then to the operating room soon thereafter,

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    3 Comments
  6. 6
    almost 3 years ago
    Ilenealizah's Avatar

    PAIN

    Symptom Management

    Changed my med with my palliative onc to methadone and it works okay but now she's all nervous so she's sending me to a psychologist since my cancer is stable, ithe cancer is still in my bones, not in my head. And I have bad neuropathy in my right hand getting worse. Ah, life's fun.

    0 Comments
  7. 7
    almost 3 years ago
    Ilenealizah's Avatar

    Lumpectomy

    Procedure or Surgery

    Having a lumpectomy Monday and I'm nervous and afraid. I'm also having my fast port taken out due to some vein anurisms in my neck. Its been used twice in almost two years.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    11 Comments
  8. 8
    almost 3 years ago
    Ilenealizah's Avatar

    Fast port removal

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  9. 9
    almost 3 years ago
    Ilenealizah's Avatar

    Started a blog

    Milestones

    www.cancerbus.com Hope some of you check it out and I'm trying to use it to help me emotionally journal my world and maybe help another in a similar situation, if it's possible.

    0 Comments
  10. 10
    almost 3 years ago
    Ilenealizah's Avatar

    Surgery

    Procedure or Surgery

    Fantastic group of doctors who listened to me, kept me feeling informed, safe, and preserved as much of my breast as possible, I even got to keep my nipple. Wanted to check in and let you all know I am home and resting. My husband was and is being so sweet and supportive, Thanks for your encouraging words and prayers they mean so much.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Neutral/NA
    3 Comments
  11. 11
    over 2 years ago
    Ilenealizah's Avatar

    Pain pain pain

    Symptoms

    I have major bone an knee pain as well as neuropathy caused by Xgeva, I'm angry t my oncology team for not managing it or the side effects that's are debilitating at times.

    0 Comments
  12. 12
    over 2 years ago
    Ilenealizah's Avatar

    Other Care

    This person has yet to add any details about this experience.

    1 Comment