The Writing Workshop

I joined this workshop after Robert passed. On the first day, the moderator asked us to write something to introduce ourselves and the loved one we were grieving. We could write in any way we wanted. Later on she gave us prompts and we were to write about that topic in 15 or 20 minutes. After each writing, we took turns reading what we wrote, and others could make comments about what touched them the most. We shared our sorrows and pain.

It was here I felt free to shed my tears.

May 11, 2020 Piece 1

I knew them since 1988 when they got married and bought their first house for $69,000 on Navajo road in Tucson, Arizona. He was a computer science professor at the University of Arizona, and she was a senior programmer working for a software company building healthcare software for hospitals. A Czechoslovak decent with golden curly hair, he was a soft spoken man. She on the other hand, came from Beijing China, with black hair and a sound laugh. They bought this red brick rambler house because it was close enough for him to ride a bike to the university. The property had a bonus one acre of land, with a large work shop and an old chicken coop attached. She soon bought 4 chicks and named them red, white, yellow and monster. Sometimes she let them out of the coop and the chicks would follow her run around the yard.

They had a little black dog named Ada. On weekends the couple would take the dog and drive out to country sides, mountain sides, or river sides. They also took on a volunteer job at the local community radio station KXCI hosting a Chinese Music Time on Sunday afternoons from 2 to 3 for quite a few years until they left Tucson. She was the DJ and he was the technician. She also taught a Chinese cooking class with Open University and handed out her recipe books he helped to type and put together. It was a time full of activities, and their house was filled with food, music and laughter.

May 11, 2020 Piece 2

“I can’t die yet, because you don’t know how to do these things!” He would say. “Of course you can’t die! I don’t know how to do these things so you cannot die!” I insisted.

He has many tools. Every time we see a Snap-On truck, he would stop and visit. Often he doesn’t buy anything because he already have just about all he needed, but he enjoyed being with tools, surrounded by tools. He would chat with the tool guy. They speak the same language.

He liked to use his hands, building and fixing things. He encouraged me to figure things out. But when something was not working it was so easy for me to just say “my dear, this thing is not working!” and walked away. Sometime later the thing would just magically working again.

Now he is not here anymore. I have to use my hands. And brain.

I could not believe it. The first thing I had to do was to learn to use his Craftsman tools to open the vault to house the urn I bought for his ashes. I had to figure out the right tool, with the right shape, the right size and the right motion to turn to open it. I was wondering how come I bought this urn and this vault that require me to do this. What is he trying to tell me?

And then the weather gets warmer and the weeds started to grow. The guys we hired never show up on time in spring so we have to mow several times before they show up. Last year Robert bought a precious fancy electric lawnmower and we used it several times but it seemed just automatically working. This time I took it out of the storage but I could not start it. I thought oh maybe it needed battery so I recharged them all but it still refuse to start. I wanted to ask him. “Robert please tell me what to do!” I could hear him talking to me “Yan, think! Try to figure it out!” Okay. I dogged out the manual but it didn’t answer my questions. Then I got online searching and watched a couple of YouTube videos. That helped. Yay I figured it out! I think he might be proud of me.

Last Thursday my microwave oven stopped working. None of the buttons had any reactions when pressed. But there is still light shining on a half circle for where a zero should be. I was like, are you kidding me? I let it sit there for two days. It didn’t fix itself. On Sunday, I found the manual and read it. The Troubleshooting guide says that it is most likely the fuse. But it says don’t touch the fuse and you should call a registered electrician because the microwave oven has high voltage. Well, I don’t know where the fuse is but I know where the plug is. I stood on a stool and reached the plug and unplugged it. The half circle disappeared. But still, I don’t know where the fuse is. After two minutes I plugged it back in. Wallah! The zero displayed a whole circle and everything started working again! I am thinking, what is he trying to tell me? I think this time he out to be proud of me.

May 18, 2020 Piece 1 (15 minutes)

I Did Not Know! I Wish Someone Had Told Me!

On March 9 2020, our calendar reminded you to call to take care of the fraud case. The week before you received a letter from a collector who intended to collect more than $3000 from you for owing Comcast bills in New York for the past 11 years! Apparently someone was using your name to rent in New York and then leaving 11 years worth of bills behind! You called various people and eventually had to have a police stopping by to write a report to verify that we live here and not New York for the past 10 years. That resolved it.

It turned out that this was the last big thing you took care of. A day or two after the police visit the pain set-in. I did not know at the time, that I was going to loss you in 3 weeks! I wish I had spent more time with you and not gone out to play bridge.

The following Monday, you were in so much pain that we had to call 911 to take you to the ER. The next morning you called and asking me to bring you the iPad, the headphone, and the noise medication. Just when I was leaving you called and said that they were discharging you. I got to the hospital and waited for you outside because they would not allow me to go in (because of the covid-19 lock down). I heard you screaming in pain when they sit you down into the chair to roll you out. You had difficulty getting in the car and I had to drive slowly and carefully because every little bump on the road would hurt you. Looking back now, at that time I should have turned around and taking you back to the ER because with that much pain, you were in no condition to come home! That night you could not move in the bed and we had to call a couple doctor neighbors to come to get you out of the bed and sit into the recliner chair. For the next two days and two nights, you sit in that chair. I slept next to you on the couch. I supposed to give you pain med every 4 hours but every hour you woke up you begged me to give you more pain medicine. I found a few pain patches to put on you, and gave you Tylenol in between the 4 hours. I should have called the oncology on-call doctor or the primary doctor on-call asking for help! Or I could give you a bigger dose of the pain med until the morning. But I was so stupid that I just followed the doctor’s orders and stuck to the 4 hours interval.

That Thursday we had to call 911 again. At much later time, I learned that because you were on Medicare, you could appeal or refuse doctor’s discharge from the hospital. I wish someone had told me that!

May 18, 2020, Piece 2 (10 minutes)

I Wish I Could Forget and Remember!

I wish I could forget all the small stuff that we argued about.

I wish I could remember the first movie we watched together.

A Netflix movie came last week, “Totoro”, a Japanese animation movie. It came from the list you setup on Netflix before you sent to the hospital. I watched it alone. It touched me very much. It was about two young sisters following their father to live in the country side while their mother was ill and had to be in the hospital. The sisters’ total innocence and purest love for their mom moved the forest spirit Totoro who came to help the sisters to fly into town to visit their mother. You would have loved it too.

Before I met you I saw very few animated movies. I remember the first time you took me to New Loft, the local movie theater in Tucson Arizona where many artsy and independent films were shown. You introduced a new art form to me and I entered your world of funky, independent films. I will continue to watch all the movies you left in our Netflix and TiVo lists, and the movies listed on your “My Movies” file you left me. I will continue to try to recall the name of the first movie you took me to see.

 

A Letter to My Friend

2020-06-23

晓芳，

上星期日是我们这儿的父亲节。从那天开始我就好难过。今天我就看到什么都想哭。今晚把桥脾取消了。没劲儿。

这几天好热，他会很高兴看到那么大的太阳。他会说好棒啊。他会坐在电视前看赛车，看科技节目，看动画片。他不在，我在干嘛呢？看啥呢？看啥都没劲。

唯一使我欣慰的是我前几天下的种子（豆角和南瓜）都出芽了。种子不负人。我每天给它们浇水。前几个星期种的西红柿已经有鸡蛋那么大的果子了。为什么植物有情而人却无情？

我生活在我一个人的世界。这世界上有没有我都无所谓。只有我的狗们认为我是它们的世界。我去院子里，它们就好高兴，在院子里追逐玩耍。如果我一回屋里，它们马上也跟到屋里。我每天抱着它们跟它们说话。它们看我的眼神告诉我它们也想爸爸。它们知道我。

燕

 

The mRCC Journey

Kidney Cancer has several types, RCC stands for Renal Cell Carcinoma, with a "m" it means, it is "metastasized". With RCC it has clear cell RCC (most common type) and non-clear cell RCC. Robert has the non-clear cell RCC. During the treatment time, I was part of the SmartPatients community online. I learned a lot from other people's experiences and it had provided me with a lot of support.

Following is the Health Profile I filled out at smartpatients.com.

It contains detailed records of what happened during the mRCC journey with Robert.

Health Profile of Smart Patients

I am the caretaker for my husband of 30+ years. He was diagnosed with
CML (Chronic Myelogenous Leukemia) in 07/01/2000
Bladder cancer in 2013
mRCC in 01/18/2018

summer of 2017, ended in ER after nearly fainted, was told that was caused by extremely low blood pressure.
2017 Christmas eve he had severe pain on his back. CT scan in ER showed masses in his kidney, bones, lungs and lymph nodes. He was discharged on Christmas day. Followed up with primary care and oncologist. After a chest CT, bone scan, petscan, and a biopsy, we were told: stage IV RCC on 01/18/2018. We live in small town Florence, MA 90 miles west of Boston. Our local oncologist is sending us to MGH in Boston to see Dr. Marc Dror Michaelson and for them to recommend treatment plans. Our appointment is on 01/25/18. Two weeks earlier I had already made an appointment with Dana Farber for 01/23/18. I asked to see Dr. Toni Choueiri but he referred us to Dr. Bradley McGregor.

My husband is 70 years old. The mass in his right kidney is 7.4x5.8 cm. On the lung, 0.9cm on the right and 0.7cm on the left. Lymph nodes on the chest, 3.0cm and 2.1cm on the right and 2.0cm on the left.

I am 64 and still working full time. Depending on his treatment and responses, I am considering cutting back my working hours.

01/23/2018 Dana Farber visit. They offered the trial of the combination Bevacizumab (Avastin) and Atezolizumab for non-clear cell RCC. They are still waiting for their pathology report. Cooley's report says "metastatic poorly differentiated neoplasm". Dr. McGregor said it is most likely "unclassified". Because the CML history they will have to do extra check to see how Gleevec will fit in with the other two drugs. If he cannot enroll the next inline is Cabo. They do not recommend surgery because that will delay the treatment for at least a month. They may consider it after the cancer is controlled to certain degree. Did MRI on brain.

01/24/2018 Dr. McGregor called to say that the MRI is negative. This is the best news we heard so far!

02/05/2018 First infusion for the trial is done without incident.

03/20/2018 First CT Scan results: “no new lesions, with shrinkage, and stable.” We are on the right track!

04/27/2018 First bone scan results: There are no scintigraphic evidence of new bone metastases. There is interval decrease in focal uptake in places.
Second CT scan results: slight decrease in some lymph nodes.

05/11/2018 Has been suffering these side effects from the infusion drugs: high blood pressure, nose bleed, diarrhea, and head ache. Taking 30mg/day Lisinopril for a month and now suffering coughing and low fever from Lisinopril. Switching to Losartan potassium 50mg/day.

05/16/2018 Switching to Valsartan 80mg/day. Still coughing.

05/20/2018 Still coughing. Lost appetite. Though May 10 chest CT scan done by Cooley showed most nodules are shrinking, some 30% decrease in size comparing with scan done on 1/2/2018.

10/15/2018 The 13th infusion today though no Avastin due to high protein level in urine (2500+!). The first 3 month scan shows tumor and lymph nodes stable with slight shrinkage. His blood pressure has been higher since on Losartin (due to Vasartin recall).

10/19/2018 Back on Vasartin 160mg/day.

11/01/2018 In the ER. His diarrhea went really bad and he was very dehydrated. From 160lb to 148lb in 3 days. Dana Farber wants a colonoscopy done immediately, either go to Boston or do it locally. Admitted to Cooley Dickinson to have it done tomorrow.

11/04/2018 discharged today from Cooley after attending doctor talked to Dana.

11/05/2018 Infusion #14 did not happen today. His blood pressure 160-190 too high; total protein in 24 hr urine is too high 2,981 compare to Oct 15's 2,506, and potassium is too low. Got infusion on potassium.
Came home with Prednisone 70mg gradually decrease 10mg in every 3 days to 10mg until gone; and Potassium pills. Doctor advised to call immediately if diarrhea returns.
I am scared. The next infusions are on Nov 26 and Dec 17. The next scan is Jan 4. If the blood pressure and protein in urine don’t improve it means he will go for three month without treatment for the RCC!

11/26/2018 Infusion #15 was given without Avastin due to high protein (higher than last time!) in urine. He is to see a nephologist.

01/04/2019 Scan showed no new lesions and still stable.

02/21/2019 Infusion #16 to #18 was given without Avastin.
Today Infusion #19: Avastin resumed!

04/01/2019 Infusion #21 Dr. decided to stop the Avastin permanently because the blood pressure too high and protein in urine too high. The scan showed that some nodules were enlarged. Dr. said that we will continue until it lose effectiveness and then will switch to Cabo. He has been taking 320mg Valsarton/day.

07/04/2019 June 21 scan showed no new growth but sizes of a few existing tumors increased. The doctor was not concerned and said to continue the same treatment on Atezolizumab alone. Robert feels extremely tired and energy level is low. Though still tries to do things around the house.

07/27/2019 Infusion #25 (Atezolizumab only) was done.

09/16/2019 Today we suppose to get #29 Infusion but it didn't happen. Scan from 9/13 showed growth. Dr. said the growth has reached the threshold for the trial which is 20%. Therefore he is stopping the trial. There are no other trials for Robert because (1) his type is difficult, aka non-clear cell; (2) his CML. Two choices of meds: (1) Cabozantinib (2) Lenvatinib & Everolimus. There are SEs for both so basically just pick one.
It is a sad day.

11/08/2019 started Cabo 40mg/day on 09/17/2019. Puffy eyes, nose bleeding, fatigue. protein high in urine and last test show kidney not functioning fully.

11/27/2019 - not feeling well, slept 48 hours straight, stopped Cabo for 4 days, and stayed in bed for a whole week. Complains of shortness of breath. Dana and family doctor sent him to ER. Found blood clots in lung and was admitted to Cooley. Lovenox injections given to thin blood.

12/02/2019 - first scans after Cabo. Doc called on way home to say Tumors were shrinking! But Robert was not able to function (unable to even dress himself). Cooley Dickinson hospital has been sending a nurse over twice a week to do physical therapy.

12/05/2019 - Saw the doctor (in wheel chair) yesterday and he said we must stay on Lovenox for at least another month or two. Changing meds is out of question right now. Due to the severe SE he let Robert take a break from Cabo for a week and see.

12/21/2019
After 2 wks Cabo vacation, 20mg/day begin today.
I did searches on this web site about Cabo and compiled the results into "Cabo dosage and schedule chart" which can be found on this site.
PT twice a week continues.

02/18/2020 - 02/25/2020 We vacationed in New Orleans and Bloxi (where he did training in Air Force). Caught cold the last few days.

03/05/2020 scan 03/12/2020 Dr. McGragor office visit for result
First scan after 20mg Cabo.
Results: CT scan showed slight decrease on some. Bone scan showed a few new spots, but Doc is not too concerned. His MRI shows no cancer in brain and was told that the neck pain was not caused by cancer. Cabo 20mg continues. Scan in one month.

03/09/2020
Saw local oncologist Dr Nia in Cooley Dickenson hospital as we tried to establish a relationship with a local doctor. He looked at the scan result and said that there were no specific scan for the neck pain. He suggested to have one. then he examined Robert's pain location and said it seemed to be soft tissue problem - muscle pain.

03/10/2020
Pain moved from one side of neck to another.

03/12/2020
Pain moved from neck to back.

03/16/2020
Pain is on both side of neck and the back. After midnight it became unbearable he called 911. Took 2 people to get him out of the bed. Taken to Cooley. ER tried different pain meds.

03/17/2020
In the morning he gave me a list things to take to the hospital as we thought they'd admit him. I called Dr. Nia's office to inform them that Robert was in the hospital. But early in the afternoon the ER was discharging him.
Yelling in pain when they were sitting him into the wheel chair to wheel him out. I had to drive extra careful because every bump on the road added more pain. Was given Hydromophon 2mg or 4mg every 6 hours.
I rented a hospital bed for him. He was trying to get on to the bed, so much pain and could not move and we had to call the doctor couple neighbor to move him out of the rental hospital bed and into the recliner! discovered that in the CT scan it showed a new fracture on the left 10th rib. suspected this be the cause for the back pain?
Dr. Nia's nurse told me that it's out of their hands and I should contact his primary doctor.
Contacted his primary doc who prescribed Valium 20mg (twice daily) for muscle spasm.

03/18/2020
Physical Therapist from VNA came he was okay until evening.
Did not sleep well. complaining pain all night while sleeping in the recliner. I slept in the couch next to him. Every hour he woke up and asking me to give him more pain medicine. I found two Lidocian patch from the medicine cabinet and tried on him. That seemed to help.

03/19/2020
Restless morning.
4:30pm Valium 40mg. Slept a few hours.
Dr. Killip prescribed Valium 50mg. I asked for Lidocian patch because that seemed to help. Went to CVS twice and got the new Valium but they did not receive Lidocian prescription. I contacted Valley med and they insisted that they sent the prescription.
10:00p Hydro 4mg. Still pain. Kept asking for more pain pills.
10:10p Valium 50mg. Still pain.
Called primary on-call. The doctor was concerned and urged us to go to ER. Could not get him to stand-up. Called 911. Admitted to hospital.
ER doctor called around 1AM asking questions because Robert was sleeping. Asked why he was not on palliative care. I said the primary doctor was brushing it away.

03/20/2020 (Fri)
Admitting doctor called at 8:10am while Robert was still sleeping. Doc said Valium is getting in the way of treating the pain. Switching to Fentanyl patch. I made a distress call to Dana F. his doctor's office telling them Robert's condition and hoping they could coordinate the care with Cooley.
No call back.

03/21/2020 (Sat)
Pain seemed to be controlled somewhat. He called me several times.

03/22/2020 (Sun)
Still okay. CVS kept calling me to pick up medicine. Ah finally figured why. Dr. Killip wrote the Lidocian for me, under my name, not for Robert! How can she make such error? unfortunately Robert had to suffer for 1.5 days because of it.
No call from Dana.

03/23/2020 (Mon)
Somehow they were changing meds. Fentanyl patch stopped and he was in severe pain. but he was still able to call me.

03/24/2020 (Tue)
I don't know what they gave him but he seemed to be a bit confused. The hospital allowed me to come visit and stay the night (because of COVID-19 you must have special permission as the hospital was in lock down). He was talking and doing things not himself. Pain was not controlled successfully.
The nurse Beth was acting very impatient and rude toward Robert. She said something to him and brutally turned around and stormed out of the room passing in front of me without saying a word. Robert said "oh no, I am now on her shit list..." The whole afternoon and evening, he kept saying "I don't know what I did to upset Beth." This upset me very much. I tried to find Beth but she's gone.
Robert was hallucinating. At night, he held his phone in hand but did not really know how to use it. He asked me to turn off my phone, not say anything or do anything. I could only watch him suffer but not able to do anything for him. Such helpless situation!

03/25/2020 (Wed)
Now the doctor said the cancer has gone into his spine, C2 and C6. They wanted to do palliative radiation to the spine in hope of reducing pain.
Radiation preparation was done around 4 P.M. When they put him onto the radiation bed they must have hurt him badly. Elliott son arrived in the evening from California. Robert told Elliott that "he was not ready to die."

03/26/2020 (Thu)
Today was Robert's 73th birthday. He woke up with severe pain but with a very clear head. He told the doctor and I that he wished no more treatment and wanted the doctor to give him a shot and he'd go to sleep and never wake up again. The doctor said "we are ready to do the radiation and it would reduce your pain. although it may not be 100%". Robert said unless it is 100% he did not want to do it because the pain would come back and it was too much to bare. He said that even if the radiation is successful one month later the pain will return and he doesn't want it.
We have lost the fight.
Since he gave the direct order the meds are now transitioning to hospice.
I asked the radiation doctor if he had ever talked with Dana F. and he told me that a nurse-practitioner called from Dana F. I was disappointed with Dana. I received no calls from them.

03/27/2020 (Fri)
In the morning they continued to transition the meds and in the afternoon they were ready to discharge him. Because of the COVID19 situation, we didn't want to put him in a hospice facility and run the risk of not able to visit him, we decided to do end of life hospice care at home. 6 P.M., he arrived home while the hospital bed was just getting setup.
Elliott and I managed to take care of him without a formal nurse training for the night. He had Fentanyl patch on and we gave him Dilaudid and Ativan in liquid forms. Incontinent.

03/28/2020 (Sat)
Nurse came with an aid. Was still able to answer questions. Best of all:
me: Are you in pain?
Rob: not at all.
was able to answer yes or no to questions. Also "water".

03/29/2020 (Sun)
Was asking for water but when the water came he fell asleep.
Can only give him water with a sponge.

03/30/2020 (Mon)
Sleeping soundly. start to lose ability to talk.

03/31/2020 (Tue)
sleeping soundly. No longer speaks.

04/1/2020 (Wed)
First noticed cheyne stokes breathing. I talked to him. I told him I love him and would marry him again. His right eye still open and tears drop out. I think he could hear me. a nurse came at 5pm and said he would not pass the night.
Dr. Nia called and said he only learned now about Robert's situation. Apparently the nurse practitioner never gave him my messages. He was angry about the fact that he was not consulted while Robert was in the hospital.

04/02/2020 (Thu)
Robert made the night. Sleeping without any movement.

04/03/2020 (Fri)
He made another night. Sleeping without any movement. We were instructed to give him Hyoscyamine Salfate to help with the mucus. But they said that is really for the caregivers.

04/04/2020 (Sat)
Breathing hard. Breathing stopped at 10:52:52 A.M.
Goodbye my love! My heart is broken. My life is broken.

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The Schedule and Dosage of Carbo

Carbo is the last cancer drug Robert took. The full name is Cabozantinib. It is a new drug that has been approved by FDA to treat advanced kidney cancer. As for any new medication, the dosage and schedule is not certain, because each person has different reaction to the side effect. Apparently your body can tolerate the side effect to certain degree, and you - the patient - needs to find that balance point where you can take the dosage to its maximum and last as long as you physically can handle before you take a break from it.

I gathered the data from the forum and compiled it into a table so for it to be a reference for new patients to see when they are put on Carbo. For us, we did not know this at the beginning so Robert was taking it until it totally paralyzed him.  If we had known that we should take a break after a few days, who knows what the outcome could be?!

https://www.smartpatients.com/conversations/cabo-dosage-and-schedule-chart#post-795940

Who Am I?

2021-03-05 Friday

I went to Stop & Shop today and got identified as a shopper who might be using Food Stamps!

Maybe it is how I dressed? Gray hair with a plain mask?