Sunday, December 9, 2018

The Journey Timeline

All winter last year Tom had no energy. We did not go out to dinner, did not drive up to Joshua Tree or down to Anza Borrego, nada. We both thought that he was getting fat and lazy or attributed it to politically-based depression. When I returned from three weeks with my mom following her second knee replacement the growth of girth was noticeable to me. I got on his case for the amount of wine he was drinking, By the time we left Two Springs in April he was wheezing and was concerned that he had developed asthma. I over-critically and unkindly said "I think you have a tumor."

It was no better in May when we got to southern Oregon after my mom landed in the hospital. It was time for Tom to get it checked out.

I am doing this from memory and with the help of our calendar. I have left out some phone calls with our Primary Care Provider and with Tom's Oncologist.

06/04/18: Tom went to our PCP Kathy about his wheezing and girth. Kathy examined him and proclaimed that it was (our first new vocabulary word) ascites. She demonstrated the "ascites wave" to him: if you tap on one side of the abdomen, you can feel the tap on the other. This does not happen with normal fat.

06/06/18: Ultrasound at Providence Central Point. A mass was noted next to an adrenal gland.

06/11/18: CT Scan at Providence Medical Center. Adrenal mass was "partially calcified" per results. The technician said "Good luck to you" as Tom was leaving.

06/15/18: Paracentesis, Providence Medical Center. Some three liters of fluid withdrawn. Fluid sent to lab for analysis. Breathing better after and some reduction in girth.

06/18/18: 24 hour urine test to check for markers of adrenal cancer. Test sent to lab in Utah, results negative.

07/03/18: First meeting with Dr Savage of Hematology and Oncology Associates. Preliminary discussion. She felt that adrenal tumor was a "Red Herring". Fluid from paracentesis showed cancer cells "consistent with upper GI origin."

07/05/18: Meeting with GI Doctor Dr Murray of Providence. Review of images from CT scan. Discussion of possible causes. More blood tests focusing on liver issues (Hepatitis, etc) negative. During visit Dr Murray mentioned that he had been involved in a 12-hour abdominal debulking surgery, though I don't remember that he used that word.

07/09/18: Endoscopy and Colonoscopy, both negative. Dr Murray mentions possibility of "Omental Cancer". Vocabulary increased: omentum.

07/20/18: Second parecentesis. Incoming emergency made technician rushed, little fluid was drawn off. Tech said that he "didn't know if he would bother again."

07/24/18: PET scan. Delayed due to wrong phone number in Hematology and Oncology records (503 rather than 541). PET scan negative: did not show any active areas.

07/27/18: Meeting with Dr Savage at Providence. Mentioned possibility of pancreatic cancer. Gave estimate of 6 months without treatment, 12 months with. Will take case to Wednesday "Tumor board" for other ideas. To start chemo based on that. I start doing a lot of thinking about how my life would be as a widow.

08/02/18 Chemotherapy Education  meeting at Hematology and Oncology. Tom questioned results of test of fluid which were not in his online records. Nurse went to Dr Savage, who then brought the papers in.

08/03/18 Port placement, Providence Medical Center. Written diagnosis "Malignant Ascites".

08/06/18 Chemotherapy with Abraxane and Gemzar, used for Pancreatic Cancer.

08/08/18: Dr Savage took case to tumor board. Thickened omentum mentioned by another doctor.

08/23/18: Chemotherapy #2: Hair loss follows closely. We note that diagnosis in online chart shows "Stage IV Pancreatic Cancer"

09/06/18: Chemotherapy #3

09/12/18: Paracentesis #3. Tech pushed and pushed and repositioned needle to get out thick fluid. Radiologist notes fluid is consistent with Pseudomyxoma Peritonei.

09/20/18: Chemo #4. We questioned Dr Savage about pseudomixoma peritonei. She states that is generally from appendicial cancer and cells do not identify as that. States that debulking surgery is difficult and painful and he would probably not heal in the time he has left. Says that she has seen two cases over the years, one referred to Seattle, one to OHSU as there is now a specialist there.

10/04/18: Meeting with Dr Savage. No chemo due to it not making a difference plus toxicity. Will schedule more tests.

10/09/18: CT Scan Hematology and Oncology

10/15/18: Paracentesis #4 at Providence Medical Center

10/16/18: MRI Providence. MRI did show lesions on omentum. Biopsy to be scheduled.

10/22/18: Meeting with Dr Faught of Oregon Surgical Associates prior to laparascopic biopsy. Scheduled for 5:30 p.m. 10/29/18.

10/26/18: Preop. Told that surgery was moved up, but there at noon.

10/29/18: Went at noon, told that surgery was now at 7:30 and would require overnight stay. Declined and rescheduled.

11/08/18: Laparascopic biopsy and "look around". Dr Faught tells Leslie and me that tumors were "everywhere". Took biopsy of omentum, peritoneal lining, liver. Confirmed diagnosis of pseudomyxoma peritonei. Following I had some angry days about what Dr Savage said in September and the fact that this wasn;t caught earlier.

11/17/18 My annual exam. I spend some time telling Kathy what is going on and crying.

11/18/18 I start on prescription for Sertraline (generic Zoloft). It helps a lot with the anger and the crying jags.

11/21/18: Phone Dr Savage, will refer to OHSU and she doesn't need to see him again.

11/26/18: Meeting with Dr Faught. He checked that Dr Savage had told him diagnosis and made referral.

12/04/18: Call from OHSU Oncology. There are two referrals, on for oncology a second from surgery. Still in surgery in basket. Appointment set for Tuesday 12/11 at OHSU oncology.

12/07/18: Call to Donnis at Hematology/Oncology scheduling. Appointment with OHSU oncology not needed as it was for "second opinion". Call back to check with surgery on Monday as we still haven't heard from them.

12/09/18 At this point we have not heard from the OHSU surgical department. Tom has little appetite, a painful inguinal hernia, and constriction of the bowels. I am concerned that nothing will be done until after the first of the year due to Christmas Holidays and I'm worried that he might suffer a blockage before then. That would create an emergency situation.

Resources:







Thursday, October 25, 2018

MAGA Roller Coaster


We are trapped on a roller coaster
A Great America roller coaster
A Great America again roller coaster.
It’s like an airliner:
the front carriage is first class
reserved for those with the means and wealth
to make their ride both thrilling and fun.
The rest of us sit behind
And because it is an “again” roller coaster
in an echo of a past better forgotten
those with darker skin sit in the back.

The train starts at a high elevation
amid blue skies and hope for the future.
We obediently board and take our seats
and start the descent.
At first there are a few rises
which excite those in first class
though others of us look beyond
and view the steady decline
always spiraling to the right
Not the right of correct,
not the right of inalienable rights,
the right that rhymes with white,
and with night.

We pass through a dark tunnel
and when we emerge we see
the carriages have separated,
become divided.
Those in the lead are on a different track
heading up another incline
while we continue down.
An angry voice sounds telling us
that it is the brown people behind
who are pushing us ever faster.
People around me are shouting with rage.
I turn to look
but no longer see those cars.

I struggle to look ahead
hoping for clear skies
But a mist surrounds the future.
Where does the ride end?