A fairly quick post… for me anyway.
01/13/25
I saw the oncologist. My brother-in-law took me. I disassociated the entire time. I faintly recall the doctor showing us the results of the PET scan and feeling so overwhelmed at how these four tumors had taken over my entire body, just shoving my organs out of the way.
We still don’t have a 100% diagnosis. Everyone seems to be confident that it’s a sarcoma but not sure exactly which kind or how bad. I was told that we really won’t have answers until after the surgery when they can do proper testing to see exactly what kind of sarcoma it is, how aggressive it is, etc.
I just… checked out mentally. It’s too much.
Then at the end, I brought up how I’m not sleeping because my body is nothing but pain (mostly unrelated to the cancer). So after signing my life away, I was given a prescription for the opioid Tramadol. Umm… so turns out I am resistant. It does absolutely nothing. I do not understand the hype. It’s like Ativanall over again. It’s like taking a placebo. So still in a ton of pain and still not sleeping.
01/15/25
On this day the appointment was with a brand new primary doctor. She was recommended to be by my favorite internal medicine doctor that I met during my hospital stay.
I am so pleased! From the office itself (and the seating situation) to the front staff person… it went really well! And it was so crazy because it randomly turned out that my new primary, when she first became a doctor, well her first attending is none other than my surgeon. She made me feel much more confident about the surgery (well as confident as someone like me can get). She told me all sorts of things and expressed how I have the absolute best of the best OF THE BEST.
01/16/25
Oh this appointment was so pointless!!! This was to see the gyno surgeon because I had been told they needed to be involved.
The doctor comes in, dramatically asks if I remembered her, and I was like uhhh yes? It’s only been two weeks since I saw you? My brain isn’t the issue?
Proceeds to ask how I’m doing, I answered honestly and said overwhelmed. She then told me good luck with the surgery and I was like… wait… what?
Oh, turns out, the reason they THOUGHT she would need to be involved is because they weren’t 100% sure it wasn’t in my lower abdomen. Uhhh I could have told you that with my 30000 scans of said abdomen. I explained that I was very confused because I was sort of there to tell her that when she removes my uterus for the surgery to just…. not put it back in. My uterus is really problematic right now and my gyno is worried about uterine cancer. Ironic huh. I told her how my periods turned off like a light switch. I only had two during 2024.
She told me she absolutely would not be doing that even if she was doing the surgery and how maybe in a year or so I can have it done to “deal with your really bad periods”. I said ummm again I’m NOT having periods? I just… I guess not all of the doctors can be perfection at this hospital.
And I had to pay a $30 copay for this. And be screamed at by my spouse before we left the house, during the car ride, etc. Such a waste of time and money, too.
Life
When it comes to my spouse, it just alternates between days and days of literally being ignored. Not a single word spoken from him to me. Or he’s just randomly yelling at me and putting me down and telling me to stop “playing the cancer card”. Because I guess 3-weeks of knowing I have cancer is me… using it for some sort of benefit? Not sure what the benefit is… but ok. Then I’ve been dealing with a lot of nausea… from being squished inside and migraines, and him not bathing for a week or more at a time is super triggering to my gag reflex.
It’s truly my 15-year-old son who does the majority of caregiving for me. He’s a natural at it and says it brings him personal fulfillment, being someone who helps others.
My 23-year-old son helps in his own way. He stays up all night so I have 24-hour care, makes every single dinner, will do tasks when I ask him.
If I didn’t have them? I’d be left to rot and die. I use to say that to my spouse all the time for years… I didn’t realize I was psychic heh.
I don’t really hear from anyone. Usually it’s some social media posts from my twin and from my best friend but that’s it. My oldest son’s father has actually been great! Anyone who has been around OSN for years and years probably remembers him. Every handle of days he messages me and sees how I’m doing and we usually talk for an hour or two. Just normal conversation! It reminds me of when we were able to be friends.
Next week I have a cardiologist appointment, where they will do some sort of testing (not sure what) to make sure my heart is strong enough for surgery. Then have the pre-admissions testing which is a bunch of labs and stuff. On top of that I need to start doing the special surgery beverages.
I have no idea how to prepare for this. When I had my gallbladder removed 20 years ago, it wasn’t pre-planned. The only surgery in my life that was pre-planned was the c-section for my oldest because he was a footing breech.
And that I’ve been told repeatedly how I will be waking up in a “new” body… I just get in my head about it all.
Ok, going to get this posted and go back to resting!
Glad you have a game plan, and treatment has started rolling along. Have they provided or referred counseling? It was very beneficial for my cousin and her kids especially. It’s a lot to deal with and process. Hang in there. Sending you a big hug. ❤️
Nope, no one has said anything about counseling. You’d think this would be something provided immediately in a situation like this, right?
I feel so isolated which is a feat in itself considering I thought I was isolated before finding all of this out. This is a new level.