Next Steps: TRYING to get into MD Anderson for treatment....
Updated: Sep 21
August 11, 2023
The first week of August was spent trying to find an entry point into MD Anderson. I already had a gynocologist there, but she didn't believe it was a reoccurance of a gynecological cancer -- it couldn't have grown/spread that fast, she said (and hey, I did have a hysterectomy and before that, mastectomies, so was it a gyn case anymore?) I had a referral to an MD Anderson surgeon to remove the tumor, and another referral for a gastric oncologist made by my general PA.
The surgeon said he had to know the type of cancer before he could make an appointment, and an oncologist, not my PA, had to make the referral. Meanwhile, the correct oncologist for abdominal cancer would not agree to see me until I had a colonoscopy to rule out colon cancer -- and a lung biopsy to rule out lung cancer. Meanwhile, the tumor is still by my appendix, which meant ouch, that pain is not being addressed in any way at all.
Since I'm routinely colon tested every two years due to Lynch Syndrome, my colon doc said no way I needed a colonoscopy this soon - colon cance4r didn't grow that fast -- and so more pushback. It would be at least three weeks, after an in-office consultation, to get it booked. I didn't know (nor did any doctor) if I HAD three weeks left, so finally I cried hard enough on the phone to his scheduler that he called me after hours and agreed to do it August 10th. Meanwhile, the gyn oncologist did help make arrangements for a biopsy of the abdominal mass on August 11th, scheduled for after the result of the colonoscopy was known. And she arranged for a referral to a lung specialist as well. This was a huge help.
ALL of these appointments were agreed to ONLY after I cried hysterically on the phone because they all of the specialists "schedulers" wanted to book me several weeks out and it was near impossible to convince them I didn't have weeks to wait in this domino string of appointments! I have had to explain to every single one that I don't expect to survive this, but I can't die in 2023. My son has had too much, and he can't lose his mother now, too. I can't add to that family's pain. I'm only asking for maybe six months, but just please, please, don't contributed to my death in 2023. I want to go in peace, with them okay, not emotionally bombarded with another death so soon.
So, by humiliating and exhausting myself, by the week of August the 6th, I had these appointments finally agreed to:
1) Monday: Phone Consultation with a lab out of Fleming Island to explain the abdominal biopsy under Cat Scan guidance procedure I would have at Baptist Hospital.
2) Tuesday: Kevin and I purchased our cremation plans. We already had this appointment scheduled before we knew about the cancer. I'd talked him into going to a seminar in May, and we'd scheduled the followup then. I just had a feeling we needed to do it, given all the deaths in the family and seeing how financially unprepared we had been.
3) Wednesday: Consultation meeting with Dr. Modi, a pulmonary oncologist at M.D. Anderson, to determine the best way forward for analyzing the lung mass. He wants to do a surgical biopsy (through a broncoscopy) of the lymph gland by my heart situated near lung mass, thinking it's the origin.
4) Thursday: Colonoscopy under sedation with Dr. Nassar of Borland-Groover. Result - not colon cancer. He said he was sorry we had to waste that valuable time. He was quite moved after seeing my scan results and forgave my hysteria about getting things booked. He hugged me goodbye wishing me luck.
5) Friday: Abdominal Biopsy, Downtown Baptist Hospital; under sedation and CT guidance to extract three samples “little by little”. Results to be sent to M.D. Anderson Clinic.
How are we coping? By living our lives as much as possible outside “Cancerville.” I know my religious friends are praying and my spiritual friends are sending positive energy … but I asked them not to remark on it. (I really, REALLY appreciate it, but it takes me mentally back to “ground zero” as a cancer patient). I said I'd send out Friday updates, one of which you are reading now, so that they already know what I know about me by reading this. And I don't have to keep repeating it text by text or call by call. It's just too hard.
I requested a psych referral because I was truly becoming clinically depressed from the stress, driving my immune system even lower. I didn't say I was suicidal (don't need an involuntary hold on me at the moment) but I did cite really urgent concerns. Yet I still have no appointment with the psych department, even armed with a referral from my gyn oncologist. You can have access to services, yes. But getting them is a real pain.
I find the most strength with Kevin and my (adult) children -- PJ, Brook and Summer. Summer is our family’s medical expert, and she’s checking MD references, lab test results, etc. I gave her complete access to my online medical chart and she's on top of it all.
I also shipped boxes of all my sentimental and bequeathment belongings to the kids (about 20 boxes total) and sent grandchildren the family tree books and mementos of our times together, too. I want to do this “bequeathing” now, from a position of strength.
Kevin is my rock, with me at every appointment. Physically, he’s picking up my slack around the house. Today, biopsy … but tonight, I’m hosting a taco party for a few friends because he’ll help me. He’s been my partner for 24 years and he’s still helping me “live the dream.”
It sounds trite, but it isn’t … Thank you for going with me on this journey! I’m sorry to express it in such an impersonal manner as a Friday Update, but friends are a blessing to my life and I appreciate your company on this latest misadventure. Hugs to you all!