On September 7th 2012, Ellen and I were set to go to the Serengeti in Tanzania for a safari vacation. She woke up with blood in her urine. I have had 7 kidney stones so I ask her if she has back pain and she says no. I ask if she still wants to go and she says yes. So we go.
While at the hotel, Ellen had a violent reaction to the anti malaria drugs and as a result had a urine test. The resident doctor told her to see an urologist the moment she got back to the states.
The urologist thought the blood in the urine was likely nothing but wanted to scope it to check. It took him two separate procedures to finally get into her ureter (the pipe that takes urine from the kidney to the bladder) and when he did he saw little tumors. He took samples for biopsy. The samples went to 5 pathologists skilled in urinary pathology including UCSF, Sinai in LA, and Sloan Kettering. The decision was split between this is really bad and not enough data. No one said it was not a problem. Everyone agreed that it was likely a form of bladder cancer.
After going back and forth between possible next steps including fully removing the kidney and ureter, Ellen decided to transfer to UCSF to an oncology urologist. There was discussion in the urinary cancer community about dangers of not acting aggressively enough on one hand and organ preservation on the other. The philosophy behind the latter was that if you remove one kidney and then the other goes, you are in trouble but if you can preserve both maybe you can save enough to not need a transplant. Ellens doctor and Ellen sided with going slow and preservation.
The new doctor scoped the ureter again but the previous biopsy had removed all of the material. We learned a lesson that we would repeat later: if the doctor cant see anything, they cannot do anything. We went home and waited.
In March of 2013 Ellen had some uncomfortable feelings including what we could best describe as stitches under her ribs. The doctor went in to do another scope and found tumors in her bladder. He removed them and treated her with a bladder-instilled chemotherapy called Mitomycin.
Ellens doctor then scheduled her for an immunotherapy that had a high rate of success called BCG. It is a form of tuberculosis that was found to stimulate the immune system when instilled in the bladder. The side effects lasted about a week each time and where like a UTI on steroids and they were cumulative getting worse with each treatment. Ellen had her first round of 3 instillations (one per week) in June of 2013.
In September the doctor scoped her again and found more bladder tumors and that the ureter was very inflamed. He once again treated with instilled Mitomycin and told us that he wanted to remove the portion of the ureter attached to the bladder called the distal ureter. He would implant the remaining ureter back into the bladder and Ellen should not notice a change in function. They would do a biopsy during surgery and if they could not find a clean margin (boundary) to the affected ureter, they might have to take the whole ureter and kidney.
In October 2013, Ellen had the operation and only the distal ureter had to be removed. Recovery was miserable with a large catheter and a stent in the ureter to keep it open.
She put her psychotherapy practice on hold for a few months. She chose to only tell her patients it was a medical procedure and not that it was cancer.
As chief distraction officer I had gotten us a golden doodle puppy that year. The puppy, Red, came three weeks after the operation. I got her a locket before the operation with my picture and Reds picture in it. Ellen and Red bonded over walks to a patch of grass down the street at a church. He with his puppy awkwardness and she with her catheter bag in hand.
Ellen recovered and went back to her psychotherapy practice. She had 3 BCG treatments every 6 months. She got scoped and had urine tests every 3 months. She got MRIs every 6 months. This went on for 2 years.
During those two years, Ellens scopes and MRIs were clean. However her urine tests (cytology and ImmunoCytes) were mixed. Half the time they indicated cancer but as before since nothing was visible the doctor felt that BCG was the best way to continue treating. Ellen had 18 BCG treatments by July 2015.
In September 2015 she had clean scopes, MRIs and urine tests.
In October she developed acid reflux but her gastroenterologist thought nothing of it because she had irritable bowel in the past and had the ongoing stress of the cancer.
In November at Thanksgiving she had backpain after preparing some food dishes but we did not think anything of it because she had tears in her L1-L5 discs. It cleared in early December.
On Dec 6th she had her next scope and the doctor was going to reduce the frequency of her scopes to every 6 months from every 3 months. Her cytology urine test came back atypical but her ImmunoCyte came back clean.
By mid-December her back pain started again and her doctor sent her for an MRI Christmas Eve that indicated her back was not the issue. On New Years Eve she had an ultrasound that indicated that her right kidney was not working well and she had Hydro-nephrosis.
The oncology surgeon went in to do a scope on January 6th and did a wash of her kidney (spray water and collect it as it comes off) and found malignant cells. He also saw a soft tissue tumor surrounding the renal pelvis (part of the kidney where the ureter attaches). Because of the nature of the tumor, he already felt it was inoperable.
This adjacent cancer was called urothelial carcinoma (bladder cancer) of the renal pelvis. It was like cheesecloth instead of a dense mass and it was invading or crushing organs, veins, and ducts. By the end of January it had encased or compromised the small intestine, common bile duct, psoas muscle, and inferior vena cava.
These attacks from the cancer were accompanied by constant pain which often exceeded 7 out of ten and sometimes exceeded 9 out of 10 (and Ellen was very pain tolerant).
She was admitted to the hospital on January 22 2016 for pain control. While she was in the hospital, they gave her a chemotherapy treatment call Gem Carbo. It was not the gold standard for her cancer but the only one the doctors wanted to give her given the shape of her kidneys.
she was released on January 30th but had started experiencing significant nausea before she left. Given that she had just had chemotherapy everyone thought it was normal.
But the nausea got worse and the week following her coming home, she would have to go to urgent care 4 or 5 times to get tanked up with IV fluids, antui-nausea drugs and pain drugs. Ellen could not even eat at the beginning of February. They were going to try to insert a stent into the common bile duct in the hope that it was the cause of her nausea. However, when they did the endoscopy to insert the stent, they discovered the part of her small intestine they had to enter (duodenum) to perform the procedure and get to the bile duct was being crushed by the tumor. They put a nose tube down to her stomach while they tried to figure out what to do.
They called in the gastroenterologist oncology surgeons and they were split with the urology oncology surgeon and chemotherapy oncologist on what to do. The choice was to insert G and J tubes for feeding and waste removal or do a bowel bypass (called a gastrojejunostomy) to connect the stomach to the part of the small intestine beyond the obstruction.
Ellen spent over 30 days inpatient in the hospital in 2016 not including infusion center and urgent care visits. She has also had a DVT and pressure ulcer due to her compromised situation in the first half of the year.
Ellen failed one chemotherapy (gem carbo) in January and immunotherapy (keytruda) in February. The tumor kept growing and spreading hence the failure.
They had done a milder chemotherapy because Ellen's kidney was so compromised in January but her kidney numbers got good enough in March to get the gold standard chemotherapy called MVAC. the chemotherapy reduced the tumor by 30% during the first four weeks of treatment but failed to reduce it further after that. It was very toxic to Ellen including symptoms of neutropenia, anemia, massive vomiting and fatigue. MVAC reduced her pain to zero.
They did not believe that more MVAC would likely help anymore and the toxicity risk was too high. After the last MVAC treatment in April the doctors just monitored Ellen and restarted the immunotherapy in the hopes it could be effective with a weakened tumor.
They discussed and discarded surgery because of the infiltrating nature of Ellen's tumor where they may have started removing the kidney and ureter and find that the tumor was so connected to other organs they would have had to start removing more and more. They were not sure she would have any quality of life afterward.
A July PET/CT showed the tumor to be active but not growing but lymph nodes were slightly growing.
I took Ellen on a trip to the British Isles in June while the getting was good. She did experience symptoms but it was a phenomenal trip. We saw Bruce Springsteen at Wembley, the Book of Mormon, Kinky Boots, and a Vivaldi concert at St. Martin in the Fields.
On August 8th Ellen got up in the morning and said her back pain had returned. We both knew.
On August 18th she had her next PET/CT. It showed renewed growth of the original tumor and broad growth of new tumors around her kidney and stomach regions. The doctors declared her terminal. We were not surprised.
They stopped all curative treatment efforts and put her in hospice.
She was deteriorating rapidly and the pain was rising. incontinence, constipation, diarrhea, fungal infections, pressure ulcer, distended stomach, loss of mental acuity. pain slope was steep.
She passed away in her sleep on September 26th 2016.
i felt her pass by me
on the way to somewhere.
i know full well her spirit
is within me.
I expect the universe
semblance of what was
and what's closer to
her soul is safely
in my mind.
I don't mind sharing
and when I do this
or I do that,
I know if she's happy
or just loving me
as she did.
On Friday September 23rd 2016 at 11am Ellen told me to order the assisted death medications.
From the time she was declared terminal in August we prepared for this. We had been told that 75% of the people who applied for the right to take them in Oregon (who had legalized the year the year before) did not use them. It was more of a control thing. Ellen did not expect or want to use them.
The applicant has to have interviews with two doctors and a psychiatrist and a social worker to coordinate. We had chosen her oncologist and symptom management as the doctors and a long time friend who was a psychiatrist. Ellen had prepared for the interviews as if she was studying for a test in college.
She read the collateral and perseverated about it. She listed her quality of life must-haves:
- uncontrolled pain
- lack of mental acuity
- inability to walk
- inability to see
- inability to hear
She passed the interviews easily.
Only one drug store in the bay area could fill it. They held onto the prescription because the suspension that came with the lethal powder expires quickly. So the process was that when you are ready, you call to order the medicine and wait 48 hours for delivery.
When Ellen asked, I made sure she meant it because we had casually had the conversation before and she had, after speaking verbally, did not really want to do it. She had always assumed she would be in the 75% and not use the medication. This time was different.
She had lost the battle on three of her top 6 quality of life items: acuity, continence, pain. She assured me she wanted to do it.
She stopped crying from that moment on and I could not stop crying from that moment on.
I called the doctors who gave her the approval to use the assisted death medications as they wanted to be present to support us as well as one of Ellen's close friends who was an oncology social worker. The pharmacy could not guarantee deliver until Monday September 26 because we were calling on a Friday. We set it up so the doctors could come after work for 7pm Monday and that gave some buffer for time to transport.
We had planned for a number of people to come by that weekend anyway, but added to it fora close circle of friends who were local who she wanted to say goodbye to. The bulk of folks came for lunch on Saturday where the Director of the Center for Thoughtful Weight Loss presided over a lunch of Kentucky Fried Chicken.
Ellen spent more of her time consoling her visitors that weekend than the other way around. She cuddled with the dogs 3-4 hours each day.
All the issues that led her to this point were due to pain. She was on massive pain drugs and still could only get down to a level 2 or 3 in pain. The pain drugs contributed to a lack of mental acuity (we will never know if there was brain involvement from the cancer). She could not manage her calendar, email, and texts and I became her secretary. The pain drugs also caused a ping pong back and forth from painful constipation to violent diarrhea (from the anti-constipation drugs). The diarrhea was mortifying for her.
She had some violent diarrhea that weekend and we finally stopped the drugs for the constipation because we knew Monday was coming.
Monday came and the only visitors were Ellen's mom, my mother and brother.
When they left we talked a bunch and she only wanted me to know How much she loved me. She did not believe I understood the depth of her love. She apologized for making me wait 10 months when we met for us to be together. I reassured her that I knew and I knew all along.
The medication arrived at 3pm. The pharmacist had threatened the courier with death (yes death) if she didnt deliver them by 3pm. He had promised us 4pm.
When they came Ellen really wanted to take them right then. Ellen was so uncomfortable. constipated, wobbly, not completely with it, edema in her legs, high blood pressure, fungus growing on her body in various places, and in pain.
she was ready to go but we had set it up for 7pm so she had to wait and it was hard.
At one point she slept for 45 minutes in that period and when she woke she was foggy and I told her she could not be foggy when the doctors came or they might not let her take the medications so she woke up and said she would not go back to sleep.
We had dinner: filet mignon, potato kugel, and Häagen Dazs vanilla ice cream. She ate a little and I caught a smile as she ate the ice-cream.
Three doctors came, one oncology social worker who is a dear friend, and a nurse from hospice
the doctors could not mix the meds. The medications came in a powder and a liquid. sleeping medication, pain medication and phenobarbital to do the job. I mixed it and added some flavor to make it less worse. she had some milk before as directed
I crawled in beside her with the people and the dogs all around in chairs.
we had a loop of a creek playing on apple tv that she like and joni mitchell and crosby still nash and young playing in the background on alexa and she grabbed my hand tight and by the time she was done drinking she was already asleep.
Her breath got shallower and shallower over 90 minutes. all of us telling stories about her and telling her we loved her.
Then she just stopped breathing
september is a hard month
Experienced Petroleum Engineer with a demonstrated history of working in the oil &energy industry. Skilled in Petroleum Geology, Production Engineering, Engineering, Oil and Gas, and Drilling. Strong engineering professional with a Bachelor of Engineering - BE focused in Chemical engineering from The University of Texas at Austin.
Company Name: Perenco
Dates Employed: 2018 – Present
Company Name: Reynolds Construction Company
Dates Employed: Feb 2001 – Sep 2016
The University of Texas at Austin
Bachelor's degree, Petroleum Engineering
Independent Contractor in conjunction with Perenco oil and Gas Company,Inc. Specialised in General Contracting, Pre-Cons Services, Project Management.
Manhattan, Joined January 2019
Lover of Dogs
Calm and Collected.
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