CDC Symptom Diary Card

Thursday, July 28, 2022

Bone Scan and #11

​Praise God, the bone scan is clear.  This pelvic pain is not as worrisome now.  Great news. I go to my part-time job in a few hours, have treatment tomorrow and have planned a day trip to the Royal Gorge on Sunday with my friend Pat.

A little story about Arnie. I was in southwest Colorado this time last year.  My sister called me to tell me of his passing and it was of course devastating news. I was told there was no immediate service planned so we stayed on the trip. 

The next morning my friend Patrick and I took the Durango-Silverton Railway tour. My assigned seat was #11, Arnie's favorite number.  It took my breath away to sit down and see the #11. I sobbed and thought that maybe he was telling me hi from up in the heavens.  ✝️❤️✝️ Thinking of his children. 😞  This is a really special photo. 

#11

Wednesday, July 27, 2022

After Prayer

I have been keeping busy.  I went to a movie (Tom Cruise) with friends Monday evening. Tuesday was a long day at the hospital for my bone scan.  I felt better emotionally, in spite of my nerves.  Forgiveness is a process.


I feel like I live in an asteroid field right now.  My new oncologist needs a baseline and I do not want to have to think about more mets.  I can't avoid it though.  Monday was not a good day mentally or emotionally but I am coming around.  I am tired of cancer mets, this whole issue is an asteroid field.  I want to travel and do good things. 


The only thing I can do is pray for Jesus to use my suffering for His will. It takes a LOT of work for me to get in this space.


After my bone scan yesterday I went to adoration, prayed the Rosary and confession. That was followed with Mass.  I cried of course because of my brother and prayed to not be in this asteroid field any longer.  I prayed for my enemies. I just want to have a joyful heart no matter what.


Later today I find out the scan results. I will write that all out tonight or tomorrow.  Every time I talk about cancer I get upset.  Every time I talk about my previous gynonc and his social worker I get upset.  It doesn't mean forgiveness is lacking but I live in an asteroid field and that could have been prevented.  


Peace

Monday, July 25, 2022

Missing My Brother and Dread

Today it was suggested that I write out my feelings.  This is an unexpectedly stressful and sorrowful week.  I wish I could run away, childish feelings but it is the truth.  I don't want to be in my skin. I miss my brother.


The anniversary of my brother's death from cancer last year is fast approaching and I never got to say goodbye. I had no idea about the details of his death and It really hurts that he is gone. I miss you and love you Arnie.  I don't know why you were sent home to God and that I remain. God is in charge and I wish I could have changed that.  ✝️✝️✝️


I have a bone scan tomorrow because my right hip and other areas of my pelvis (symphysis) hurt.  New oncologist being thorough and cautious, for which I am grateful.


The scan brings up a lot of fear and negative emotion, really negative, but I will try to just stay busy until my next appointment. I can't really shake this because I'm angry about Feb 2021 medical error, but I will try.  I know God is there but I feel raw today.  


My new oncologist is trying hard to catch up but I feel dread.  I always ask God for help.  I'm seeking EMDR treatment to deal with medical errors from the past because THOSE memories and feelings are also hurting me. I feel trapped in them.... and it takes up space I need for other things.  I want to run away.  


Praying I have good news on Wed evening.  I miss my brother. I miss Arnie ❤️  

Friday, July 22, 2022

Update: Feeling Reassured !!!!!!❤️❤️❤️❤️❤️

Update:  Thank you all so much for your prayers!  They really helped. 

I had a really good appt with my new oncologist and I am so pleased.  They did apologize for mishap.  I will get increasd in Taxol but we will keep it to what I can handle.   I am so relieved that my new team is supportive.  Thank you again... ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

Wednesday, July 20, 2022

Wrong Diagnosis On CT Order And Radiology Report

​Bladder Dome Tumor increasing in size.  Wrong DIAGNOSIS on CT order for today.  WRONG diagnosis on radiology report.  What I had to go through to get a corrective addendum is completely unacceptable!!!! 

I have a new medical oncologist and mistakes are already happening.  I am going to go insane or dive into a severe depression.  I can't take any more medical errors!!!!!!!!!!! I missed an entire year of potential treatment to knock back my ovarian cancer mets, when it had not spread as much, because the radiologist did not write down all the correct information Feb of 2021! Now I have no idea what will work.

My psychologist is trying to find me a counselor who does EMDR therapy for PTSD.  I contacted one last week, no reply.

My new oncologist told me (re: incomplete radiology reports) at my first visit with him  'it happens all the time'.  I said that was wrong and there was no response. 

Today I did my part to be on time and be still for the CT scan and ONCE again there was an error.  I do not trust the scan report because the radiologist was looking for breast cancer, which I don't have (praise God).  I asked for a new radiology read with a different radiologist and I was given a phone number to call.  

I see my new oncologist Friday and am scheduled for Taxol.  He needs time to get to know my case but the wrong diagnosis on an order is absolutely not acceptable under any circumstances  What the heck is going on where I get cancer care?  

The 'wrong diagnosis' could have been written incorrectly by an assistant but how did that significant mistake go unnoticed by layers of professionals???? The radiologist was comparing today's scan to on in Feb 2022 and NOWHERE on that report or anywhere on my chart does it say I have breast cancer.  I have ovarian cancer.

If I want any credible care I would have to move! I can't drive back and forth to Loveland (if I were to go to MD Anderson) from Enhlewood, it's too long. I am too tired to make that drive for each treatment, let alone other unexpected visits. 

I cannot tolerate PARP inhibitors because they cause me serious bad side effects. Zejula was a terrible drug for me. I never should have agreed to try it. 

I have no idea how fast cancer is growing because my previous team screwed up so badly, then punished me for getting angry about their mistake. I want more time for Taxol or try Gemzar again. 

How am I supposed to feel?  Am I going to get punished for being upset today?  I ask anyone to be neutral about having the wrong diagnosis on the CT order and radiology report and that is tooooooooo much to ask of anyone. I need lots of prayers and can I please please please receive proper medical care?

I think my previous team should pay my bills and pay relocation costs to get better care at a reputable cancer center and pay my living expenses!  What did I do to them to receive such bad care?

This blog is all I have. They are killing me.