You just never know.Stay tuned oner the next few months for “Pam’s Perceptions”
At this point there’s very little we can control so we’re going to spend the next few months sharing all the lessons that Courtney and I have learned from our Mom.
We are sharing this as a way to memorialize her and the impact she has had on our lives.
My friend Rachel Willis said something to me when I told her what was going on that I firmly believe will carry me through the next few months....As children we simply have one job and that is to walk our parents home.
So here’s what’s going on for those of you who don’t know. A little over two years ago as an incidental finding they discovered my mother had a urothelial encapsulated cancer in her kidney. At the time we were relieved because it was a simple procedure. Simply pop the kidney out everything was fine no chemo and no radiation it was super early on it was no big deal. For god sake she was five years clear on ovarian and breast cancer certainly a silly little and capsule to kidney cancer wasn’t going to get her! But the surgery got messed up. They nicked a part of her bowel and because it was such a routine procedure the doctor never even came back to check on her. Their procedures dictated to just kept sending a physician assistant. The nurses all knew something was wrong but the PAs wouldn’t listen. We all knew something was wrong but the PAs wouldn’t listen.
Eventually the nurses couldn’t take it anymore and neither could we. There was black ooze in all of her drain tubes and she was delusional and the PAs still would not listen. The nurses (who I still consider Saints)called in the rapid response team. My mother was septic and they rushed her into emergency surgery to fix the messed up surgery. Three horrific weeks and my mother was barely able to recover from the damage is been done...We brought her home at great expense and did all of her rehabilitation at home. We certainly weren’t going to trust a facility after what we had been through the last three weeks from this simple routine procedure.
For the past two years mom has not felt well. She has had over 75 office visits, exams, tests, procedures and bloodwork to find out what was going on.
Every one of her doctors including her general practitioner, her internist, her urologist, her oncologist, her nephrologist, her bladder doctor, her cardiologist, her endocrinologist all told her nothing was wrong, it was all in her head and she was just getting old.
Two weeks ago she came into my Chiropractic office because her shoulder was hurting. She had not fallen there was no reason for the pain she was experiencing and it was unbearable. We had a heated discussion and I told her I would not adjust her until she went back to her oncologist and got a PET scan.
At first they didn’t want do it. She had a PET scan a year and a half ago and she wasn’t due for another (according to insurance regulations) for at least another three years. My mother advocated for herself and they performed the PET Scan. Thanks to federal electronic medical record laws my mothers PET scan results posted on my chart four days before we could meet with the oncologist to discuss the findings.
Because mom didn’t fully understand what the report said, I was given the opportunity to go line by line explain to her that both of her scapula, both of her femur heads, her atlas, her mediastinum, her thoracic spine and her sacrum we’re all eaten up with hyperblastic metastatic cancer. When we met with the oncologist, who is a lovely and compassionate man, he said he wanted a biopsy so he could name it...(like it mattered at this point.)
The biopsy was performed on Thursday. Again, yay electronic medical records, the results were posted on Saturday and we met with the oncologist that Tuesday. We went into the appointment knowing that she had a stage 4 metastatic Urothelial cancer. There are no treatment options. Our job now is to keep her comfortable and to walk her home.
I keep saying that God has given us an opportunity to put a bow on her life and that is what we are going to do.
We will spend every day we have left with her talking with her, sharing with her, listening to her and as best as we can memorializing her conversations.
My parents have led an incredible life they have seen it all and been everywhere.
They have poured their heart and their soul into this Kennesaw community and their family and their friends.. and those things will always be with us.
The only thing she wants is to watch her grandkids grow up and that’s not something we can give her...But knowing their grandmother is something we can give them.
If you made it all the way here my reason for writing this is because my sister and I just can’t talk about it.
We can’t keep telling the story over and over again.
It’s not because we don’t love you my friends... it’s not because we don’t want share it... we just can’t spend this much time energy and effort on horrific mistakes that were made that are taking my mother away from me earlier than she should be going.
The best thing you could do from here right now is share a memory you have of my mom so we can put them in a book for the girls.
The very best thing you can do is take every day as a gift.
Be mindful of your own health
Take responsibility for your own life and don’t leave it in the hands of a “professional” who is getting paid in a broken system to simply look at 1 inch of your body and ignore your body as a whole.
