Nobody Has Ovarian Cancer: The Soft Whispers of a Fierce Blow

I go by #Servivorgirl. Celebrating almost 14 years since diagnosis of stage IIIC ovarian cancer, recently restaged to IVB. My blog is called Nobody Has Ovarian Cancer because I felt like a nobody upon the eventual correct diagnosis. Being told multiple times that I was too young to have ovarian cancer, I did not receive the proper testing. I am so grateful to Him for all those who allow me to share my love, to those who love me and those who treat my illness. I praise Him always.

Saturday, May 13, 2023

Mom I Need You

It’s Mother’s Day weekend. I miss my mom! Now I am dealing with consequences of 4 bad doctors, men who don’t hear me. The latest just the same as the rheumatology resident, giving me too much medicine. I told my oncologist I wanted to start with small dose of Gemzar. It is even in the protocol. I literally do NOT understand!

I am emotionally distraught today. I miss my cat Marilyn. I miss my Mom. I know God walks with me but today I don’t feel him. I can’t take the brutal disregard and abuse any more. I’m struggling. I should not have been given full dose of Gemzar. I can’t scream loud enough!

I am only on my second day of going to the outpatient clinic for daily IV antibiotics and my stomach is getting upset. I’m overwhelmed about trying to juggle daily outpatient visits with work.

After all this I still have to work. That is not right. I filed a grievance. ALL the other abuses at the teaching hospital have been ignored. They are supposed to call me Monday. If a doctor can get away with infusing too much chemotherapy then no patient is safe.

I need my mom!

Tuesday, May 09, 2023

Daily IV Antibiotics & Chemo On Hold - My VOICE

I gave a good confession, received Anointing of the sick and holy communion. I am in disbelief and my emotions are all over the place. My heart is broken, once again. My new treatment sanctuary is no longer safe. There was no reason to receive a high dose of Gemzar, yet it happened. None of it makes any sense to me. Why?

My last resort, Gemzar, had worked in the past but with serious consequences. I was hospitalized because of toxicity in 2020. It is ok to give Gemzar at a reduced dose when there is a history of toxicity, that is what I asked for and it was even noted in the plan to do Gemzar at a reduced dose. It is written in the medication protocols as to how to reduce the dose when there is a history of toxicity. Nobody listened. I am invisible.

I wrote it in messages and it was part of multiple discussions. I needed surgery on May 5, 2023 on my left knee to remove septic tissue. I have been on IV antibiotics since May 3, 2023 and will continue daily IV antibiotics for several weeks. My chemotherapy is on hold until cleared by infectious disease doctor. I literally do not understand why my doctors ignore my requests. Who would have been hurt if I were to have received the 25% or 50% of Gemzar? Not one person other than me if it didn't do any good.

My experience with Gemzar in September of 2020 showed a remarkable drop in CA125, which is why I had been asking for Gemzar since March of 2022 (after a year of untreated cancer growth). The only problem was the dosing and managing my severe adverse reactions to GSFs (which stimulate the bone marrow to produce WBCs). I ended up receiving a half dose of Granix on May 5, 2023 prior to my knee surgery. ON Saturday my spine was on fire and I was literally howling in pain. I needed morphine. We learned maximum GSF should be 25%, per me, the patient. I want to do more Gemzar at 25-50% because there was a significant drop in CA125 from my infusion on Aril 25, 2023. Maybe if the oncologists actually had cancer they would understood what it means to listen when the patient says no. (this blog post is updated because I felt so betrayed by my doctor that I had to vent. I still feel betrayed but felt it was important to scale down the emotion. How can I trust someone who lies to me?) This blog is my voice, my life and my experiences. When I write about my treatment it is the treatment facts and my experience/feelings related to that. I have a right to tell my story. I am still very hazy from the hospitalization. I don't want to drag anyone down I just want to live.

05/18/23 I am severely depressed because I have to wait another 6 weeks before I can go in a pool, lake or reservoir to swim. I'm allowed to use a SUP or kayak, but only if I can keep my left knee dry/sealed. Water is my heaven. I now have stage IV cancer (which was never even discussed with me, I read it in a report) and my oncologist is ruining even the last moments of my life. Does this happen to other cancer patients or am I the lucky one. I really am lost. I will hope to have a new oncologist but will have to move. I have no money to do that. I don't understand.

Wednesday, May 03, 2023

Sitting In ER Found Out Knee Septic

I saw my oncologist on May 2, 2023 and had told him about fevers. Later in evening my blurry vision was getting worse. AFter 6 or 7 hours in the ER I was transferred to a hospital for IV antibiotic MY ANC has dropped to a dangerous level. During the ER visit my left knee doubled in size. I mistakenly thought it was an arthritic flare. It was a septic knee, had surgery for infection on May 5, 2023. This has been very trying. I appreciate all your kindness.

Tuesday, May 02, 2023

CA125 Jan 2021 To Feb 2022

I just now received results that my CA125 did go down slightly with Gemzar, so I have to find a way to keep taking it. I don't even know what that will entail. I can barely see what I am typing. I will go to the ER if symptoms get worse but I did not deserve any of this.

This is why I am upset. I cannot work very easily while on Gemzar, obviously because my labs are in a poor state and the side effects have taken a huge toll on me with just one treatment. My previous gynonc will never be held accountable, not will the radiology resident. I did NOT deserve to be punished by my previous gynonc for complaining about their error that effected my life expectancy!

I am exhausted.

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About this test

Details

Past Results

Graph of Past Results

From:

To:

- or -

Latest values:

Name Standard Range	Cancer Antigen 125 DXI 0 - 35 U/mL
1/22/21	47
2/19/21	79
2/26/21	82
3/19/21	70
4/9/21	91
4/30/21	92
5/21/21	111
6/18/21	134
6/29/21	148
7/16/21	135
8/6/21	129
8/27/21	157
10/8/21	185
10/29/21	157
11/19/21	183
12/10/21	200
1/7/22	242
2/4/22	255
2/25/22	305

CT Scan Feb 15, 2021 Who Has The Right?

CT 021521 error W CONTRAST - Details

Comments from the Doctor's Office

CT looks pretty clear.

Study Result

Impression

IMPRESSION:

1. No evidence of new metastatic disease within the chest, abdomen, or pelvis.

2. Unchanged nonenlarged para-aortic and portacaval lymph nodes which were mildly FDG avid by comparison PET/CT. No new or enlarging lymph nodes in the abdomen/pelvis.

CONTACT INFORMATION:

If you are a patient and have a question about your radiology report, please discuss it with the provider who ordered this imaging study.

If you are a health care provider and have any questions regarding this or any other Abdominal Radiology report please call: (720) 848-6007. The Abdominal Radiology reading area location is: B-325 AIP2. We are staffed 7 AM - 5 PM Monday through Friday. After hours or on weekends please call (720) 848-8666.

Report E-Signed By: Matt Markese at 2/16/2021 10:48 AM
WSN:PACSREM73205

Narrative

EXAMINATION: CT OF THE CHEST, ABDOMEN, AND PELVIS WITH IV CONTRAST

DATE: 02/15/2021, 1907.

INDICATION: 56 yo F with a PMHx of recurrent ovarian cancer s/p hysterectomy/oophorectomy on chemo, now with rising CA125; please eval disease/METs
Was there a contrast reaction? No
Was there a contrast or saline extravasation? No.

TECHNIQUE: Transaxial images of the chest, abdomen, and pelvis were obtained from the apex of the lungs to the ischial tuberosity according to according to routine chest, abdomen, and pelvis protocol.

CONTRAST: Isovue 370, 85 mL.
IMMEDIATE ADVERSE EVENT: None

COMPARISON: CT of the abdomen and pelvis dated 8/5/2019, PET/CT dated 8/20/2020

FINDINGS:

CHEST:

Thyroid: No thyroid lesions.

Thoracic inlet: No adenopathy.

Mediastinum and hila: The airways are normal. There is no significant mediastinal or hilar lymphadenopathy.

Heart and great vessels: The heart is normal in size. There are no significant coronary artery calcifications. No pericardial effusion. Great vessels are normal.

Lungs, airway, and pleura: No significant pulmonary nodule or infiltrate is noted.

No pleural effusion.

Breasts and axilla: Normal. No adenopathy.

ABDOMEN AND PELVIS:

Liver: The liver appears normal in size, shape, and attenuation with no detectable focal lesion on this exam.

Patent portal veins.

Bile ducts: Unchanged dilation of the common bile duct.

Gallbladder: Surgically absent.

Pancreas: Normal.

Spleen: No splenomegaly.

Adrenals: Normal adrenal glands.

Kidneys, ureters, urinary bladder: Kidneys and ureters appear normal. No hydronephrosis.

Urinary bladder is thin walled and distended.

Reproductive organs: The uterus is surgically absent.

Gastrointestinal tract: Appendix is surgically absent. No obstruction. Contrast is seen in the small bowel.

Mesentery: Normal.

Peritoneum: No free air. No free fluid.

Retroperitoneum: Surgical clips. No significant lymphadenopathy in the abdomen and pelvis. Unchanged 7 mm periaortic lymph node, previously 6 mm (5/121). Unchanged 8 mm precaval lymph node in the porta hepatis (5/100). No newly enlarged lymph nodes are identified.

Vasculature: Mild calcifications of the aortic arch.

Bones and soft tissue: There is mild degenerative change of the spine. No aggressive osseous lesions are identified. Small fat-containing umbilical hernia another fat-containing hernia is seen along the anterior abdominal wall (5/89). There is a 6 mm nodule fat density located along the anterior chest wall, most likely represent fat necrosis (5/31). Stable lytic lesion along the right ilium.