Some of you may have read my long story on the Enhertu infusion. I have it in my lungs, spine and then it spread to my liver and the next treatment (Xeloda, I think) and after three months still progression.
If you have the time, grab a cup of coffee and read. OR, if you are having trouble sleeping this long post will have you snoozing with minutes
After what I experienced from that infusion, I was petrified to go into any hospital or trust any doctors. I even told my onco if I got hit by a truck, I would rather them leave me outside than bring me to the hospital that is associated with the cancer center and breast cancer center.
My onco (bc I freaked out of what I went through after one infusion) and that everybody in the building knew the police had to break down my door and found me unconscious in the bathroom and they said blunt head trauma. I do not believe it was the medication. I think it was administered improperly. Regardless, I was NOT trying anything new. I threatened to sue her and filed a report with the FDA (that fast tracked passed it for stage iv).
At the time I signed on with an at home-hospice nurse, I was still using the walker and my thinking was not clear. I did not know what I was signing up for until I learned that I am NOT even allowed to get a blood test bc they considered that "life-prolonging" plus I lost Medicare which I had no clue.
I no longer use the walker, was taking the train and the bus, I live alone and have no aide and I do my own shopping (I dont drive) and laundry and cleaning.
I told my nurse last week that this coming week I was going to be revoking the agreement. I spoke to my palliative care doctor (who wrote for three years the oxycodone script and Fentanyl pain patch and it makes you forget you have cancer.
I told her I feel normal now and after I spoke to my former palliative cancer doctor (all in the building as the cancer center), she said if I revoke the agreement I can start going back to her so that was going to be my decision.
So basically except for that one infusion, I have been off treatment. Having my sense of taste come back was fantastic. I ate things I had not eaten in a few years, like ice cream, and cake and whatever I wanted.
So this week I was going to have the agreement revoked but now things are changing rapidly like the hospice nurse told me (the other patients she sees at home are in hospital beds and are on oxygen) and I am not there. I told her I do not even take naps.
Spoke to soon so basically no treatment since mid-October. The past three days I am sleeping more than I am awake. I live alone and I went from not taking any naps to sleeping more than being awake. Then today I found (I did not have a mastectomy since the breast cancer center found it in my lungs.
The tumor in my right breast is so large and now almost black and blue and now I feel three lumps under that breast (it does not even look like a breast anymore.) I have no clue why I have three lumps under my tumor and I can tell by the size of my breast tumor that is so so large that it was spreading.
So I know now, that things are changing and rather quickly. It was nice not to have to take any hard drugs except the pain medication. But the sleeping most of the day and the three lumps just started. I can actually see the lumps sticking out when I pick up my breast. I have no idea if a breast with a cancer tumor can actually grow more tumors. Now, when the breast acts up, I cry. Opiates do not work for nerve pain and the tumor is pressing on my nerves.
Then my one friend (this is where having a family would come in great) was angry or said words to that effect that I gave another friend a ring I bought in Italy years ago and that whatever was left over I wanted them to split between them.
So now she said you can take me off. God, almighty I really may have to ask one of the porters I know here if he wants to be on the will. And my friend in Fl (and she lives with her hubby and they have no kids) totally disgusted me when I said I would need her to send a death certificate to my friend in Staten Island. She was like they are expensive, they are like $45 each (they are not). She never called any places.
I spent three days until I found a place that would do the cheapest kind of burial, direct cremation, nobody gets ashes and (sorry) they only cremate me and do not pulverize the bones bc that would cost more money. He asked if I wanted my bones tossed in to the ocean (probably another $800). I said no, wrap me in a trash bag and toss it out with the office garbage.
The friend in FL I had made 100% beneficiary of my very low $,7000 life insurance. I made my friend (who wont get much)payable upon death of my checking account she she would need a certified copy of the death certificate. Now, the friend in FL is annoyed by all this that the $2,000 or $3,000 that may be left was all for her and her husband. I said you know what, forget it.
She never once made any calls or googled to find a place so I spent three days (most funeral parlors do not do it) finding a place, getting a copy of the agreement and a breakdown of the expenses.
My friend in SI has a full-time job and I rent a coop apt. for the past 28 years from my LL that lives two floors below. She was honest from the beginning and told me (she is divorced and her 35 year old unmarried daughter lives with her) that she did not want to deal with a coop board or my landlord and it would too much for her. My other closest friend in SI just had her son die on March 12, 2022 due to mixing heroin and fentanyl so I am not going to burden her bc the anniversary or his death is coming up and this is the last thing she needs to know about.
I could get a public executor but now I am feeling sick and not willing to go into law center in Manhattan bc of how bad I started feeling so quickly. Can you imagine having to ask a porter in the building. I found a place that will do a direct cremation for $1,700 and I wanted my friend in FL (even though my LL and I do not even speak) to send her besides the $1,200 security (I now pay $1,350) to give her another $2,000 out of my life insurance bc I have nobody to clear out my apartment. Nobody, You look back and wonder how did this all happen.
So as of now, I have nobody to take care of everything. I will give it to the one porter I get along with and ask him to give my LL a bit extra and for him to pay for my cremation and he can keep the rest. So sad to be going out this way. But I came into this world in 1960 and my mother was not married which was a big no no. My father wanted nothing to do with me. Then my mother had another baby which was put up for adoption, besides an older 1/2 brother from a different man. I think she was trying to create what she did not have growing up.
Then she got pregnant again, only this time (and I was living with her only, my father had left us) and my mother bled out in the apt. we lived in and she died at a hospital less than 20 minutes away from where I live. Nobody from her family ever stepped forward so Catholic Charities buried her at the age of 26 in a pauper's field. then I was into foster care, and then my PATERNAL grandmother said no grandchild of her was being raised in a foster home and she took me out only to die two years later and then it was a bit of a merry-go-round. I have not one picture of my mother, knew nobody in her family at all.
A friend bought me the ancestry dna kit for Christmas bc I wanted to see if my mother had any family) bc I do not even have one photo of her. My photo album has one picture of me as a baby and then starting with first grade.
I was hoping and excited to find other members of my maternal family since I was basically raised by siblings of my father who never came to see me but was forced to pay child support to his Aunt and Uncle who took me in.
Lo and behold. Found no relatives of my mother but I was confused by all these names that showed a direct link to me until a search angel (they help people with these dna kits) and found out that my paternal father was not even my father. There was no DNA back then. I cried bc I am who am I?
Turns out my father was a 35 year old divorced man who fought in WWII. He is deceased but that I had two 1/2 siblings from him and several 1/2 niece and nephews. It suddenly clicked that I think he did not believe I was his, but my mother (who never met his family) called my paternal grandmother (his mother) and she forced her son to marry my mother.
I realize now that he suspected I was not his so he had no love for me. It was hard to deal with.
Never buy that for anyone has a gift. There are support boards galore from what people find out. Five siblings all took the test and it turned out one of them was only a 1/2 sibling and never knew that. Her mother had had an affair and her husband did not know that.
Some things are better not known. I wish I could find a home to live in that had other single women like me.
The realization that things are indeed changing quickly and for me, quite frankly, I am done anyway. I can't believe how petty people get over such minor things. UGH.....
Sorry, this group is the only group I feel comfortable discussing things. I hate that I have no one to go through my stuff (I did a will just for this purpose and is now angry.
Sorry (once again for the length). Oh and I forgot to renew my Office 365 that I have been renewing for almost 8 years and just realizing it was a third party vendor. So wake up today and all my ct scans, folders, doctors, loads of important stuff just gone. They take it off your computer and delete it.
Okay time for me to stop bc I make my computer pc crash by the length of my emails. I hope and think it will happen quick. But now feeling really sick. My stomach is very extended (the liver increase) and my face and arms are gaunt but my belly is so big. I think I can actually feel my liver from one side all the way to the other side.
I am okay. I am done with all this but at Least I had 3 1/2 years on verzenio and a few months on no heavy duty meds, and my taste came back and OMG. I was so so excited.
So much has happened!
Primary vs. Mets and Surgery
Overhead my onco being reprimanded last week. I am sure it was about me. Very long, venting. Feel free NOT to read.
