6 May 2018, Health Update

p.s  I have been searching my mind for the proper description of the paresthesia of my feet for I knew I had experienced these symptoms before.  Finally it dawned on me.  We all have had ‘numbed’ feeling in one or the other foot sometimes after sitting crossing our legs for a period of time.  Upon rising, not only do we have a heavy ‘dead weight’ leg, but also sensations of pins-and-needles tingling in the toes, accompanied often with a loss of balance.  This describes the way my lower extremities have been for at least three weeks, much more prevalent today.  Although able, I walk very unsteadily today.  Hopefully having stopped the Abraxane last Thursday, these paresthesia symptoms will slowly improve.

Health Update: 4 May 2018

Thursday, May 3, early rise for boat trip to Seattle on the 7:55.  We arrived at the terminal 12 minutes early, but the car capacity was at overload.  For once in a very few times we used our medical priority boarding pass and were placed in the carpool lane, at the bow of the boat, first in line.  Thus, behind the motorcyclists, we had front row seats watching the glorious Seattle morning skyline as we sailed.  Greatly appreciated the Good beginning of our day.

Again, we experienced an efficient staff and technicians at VM as they all performed their tests efficiently and uneventfully by 11:00.

Dr. Picozzi examined me around 12:30.

Blood works were unremarkable.

CA 19-9 rose slightly (996) but most likely still within normal limits. (WNL) of test variation.

CT Scan was a little puzzling.  The ‘older’ lesions seemed to be receding, but there may be suggestion of a few suspicious new one developing!  (though non-specific).  Dr. Picozzi commented that the result and report were conflicting.  The areas of ‘abscess’ monitored by Dr. Woolston showed slight shrinkage.  (I dose myself with IV antibiotic daily and she concurred to continue the current regimen since it causes me minimal inconvenience.)

Symptomatically, I continue to have less stamina and am more aware of losing muscle strength.  The lower extremities paresthesia is slowly and steadily getting more pronounced and more intolerable.  I have very little feelings at the bottom of both my feet.  From sitting to standing, I often lose my balance, having a sensation of falling mostly forwards.  I also stumble some when walking because I don’t feel my toes as I walk.  Sometimes, while walking, the bottom of both feet feels ‘pins-and-needles’ awareness.  Linnea is insisting that I start trial using a walking pole.  We requested a referral to have a physical therapy evaluation and that was promptly arranged today with the New Motion Rx on Bainbridge.  For this time, we also stopped the Abraxane agent as a trial to see if the paresthesia symptoms lessened.

As to the thinning of the mucosa membrane and development of ulcers in the mouth, it was better these last two weeks, but not completely resolved.  Because Dr. Picozzi eliminated Abraxane, he full-dosed my Irinotecan regimen.  (This agent most likely plays a greater role with my mouth sores!)  Oh, Well, although I’ve been on this med in the past and had not had problems.

Bottom Line:  I feel well, I don’t feel sick, my appetite is good, and I am maintaining my weight.  I mostly accomplish trying to exercise by (walk a mile day with Linnea’s urging).  Now with PT regimen onboard perhaps I’ll have more assistance in building more strength.

Again,  Deeply-Felt THANKS to all visitors.  Update in two weeks.

Health Update: 20 April 2018

Again, we were on the 7:55 Seattle ferry for the scheduled Chemo session.  Just so that everyone is speaking the same language, let me differentiate and clarify the terms signs and symptom.  Signs:  any visible observations such as weight loss, change in skin coloration, swelling and puffiness, hair thinning/loss, etc.  Symptoms:  how the body feels such as fatigue, sleepiness, nausea/vomiting, headaches, peripheral paresthesia, mucosal thinning and ulcer formation secondary to the Chemo agent causing difficulty in eating, G-I irregularities, etc.

General Health: I sense that my muscle mass is weakening, and I think I should start some mild arm and leg strengthening training.  The thinning and development of sores in the mouth make eating, (a significant part of joy for me) difficult these last 3 weeks.  For this reason, Dr. Picozzi reduced the dosage of Irinotecan and 5-FU to 75% of my normal dose.  Hopefully this helps to reduce the discomfort.  Additionally, I am having more paresthesia of my ankles and feet.  I can’t tell if I have socks on or off; sometimes I can’t even tell if I have shoes on!  Also, I lose balance momentarily when I stand up from sitting, or whenever I get out of bed.  This most likely is a side effect of Abraxane, but I don’t want any changes in the dosage of this medication until after we get the result of the CT Scan at my next visit.

Physical Exam:  I appear as a picture of health.

Lab Test:  All values acceptable.

CA antigen 19-9, 2 weeks ago when I was pleased when it was 1076.7u/ml, today it came in at 903u/ml.  Very happy with this trend after a high of 3300u/ml on February 8, 2018.

CT scan at the next appointment 3 May will reveal a lot more; can’t wait!!

Deep heartfelt thanks for visiting and your continued care and concern.  Update after the CT Scan next visit.

Health Update 6 April 2018

Returned to Virginia Mason yesterday on the 7: 55 Seattle ferry for a routine Chemo Therapy session. All blood works continued improving slowly toward normality. Asked about new symptoms, I can only say that the GI system was more active with difficulty eating because of the thinning and much increased sensitivity of the mouth and cheek membrane. Even eating a soft croissant hurts because it is ‘rough’ on the cheek mucosal lining. Frequency on the other end was also problematic. Additionally, I felt sleepy a lot. I shut my eyes and I’m asleep. Waiting in line behind Linnea for communion Sunday during the short contemplative time, I truly felt asleep, momentarily, standing upright. I can cope with all this; I am reasonably comfortable. Despite the fatigue, I have enough energy to walk 1 mile with Linnea every other day.

A recap on the factors the doctors consider in determining our present status:
1. General Health
2. Physical Exam and general impression
3. Laboratory tests: CBC, Electrolytes, Liver and Kidney function, etc. Most important to me… the CA antigen 19-9, (TUMOR MARKER)
Remember it was not long ago it shot up to 3300u/ml ?
4 weeks ago, it began to reverse, first good sign.
Today it came in at 1076.7u/ml compared to 1173.9u/ml two weeks ago, I’ll take it even though it is only a 10% change. (may only indicate lab tolerance since normal is <37u/ml.)
4. CT Scan (scheduled next month)

I’ve managed to complete and file our 2017 1040 income tax document. We are planning a leisurely trip to Portland to visit Linnea’s siblings next week. I also have signed up for our Bethany’s Men’s retreat at the end of this month. We are making the most out of living life fully.

Thanks for visiting for I feel privileged of your care and concerns. Hope all’s well with all of you. Update after my next treatment 4/19/2018.

Health Update: 23 March 2018

I had a routine Chemo therapy session yesterday, 3/22. My blood works were reasonable with expected persistent anemia and lower protein and albumin level (though not quite low enough to be causing shortness of breath nor pedal edema). The Neulasta shot given two days after the infusions has maintained the white blood cell levels at normal range allowing my Chemo treatment regimen to remain on schedule. Another sign of ‘improvement’ is that the CA 19-9 correspondingly came down from over 3300+u one month ago; 1738u two weeks ago, and yesterday it registered 1174u!!! Heading the right direction.

I have had mild paresthesia of my hand/fingers and feet for some time secondary to the side effects of Oxaliplatin. Even though that medicine was completed 6 weeks ago, and the symptoms were slowly disappearing, but during these last two weeks I sensed more tingling and numbness, especially in my feet. Dr. Picozzi informed me that this is also a side effect to Abraxane. He was ready to decrease my dosage to 75%. I promised to monitor my progress and when/if it becomes more problematic, we’ll cut the dose then. I don’t want to ‘rock the boat’ when I am seemingly improving. Dr. Picozzi concurred as long as I agreed not to minimize the side effects. Thus, my Chemo ‘cocktail’ consists of Abraxane, Leucovorin, Irinotecan and 5-FU, with daily infusion through my Power Port of a broad-spectrum antibiotic INVanz. So far, I am managing well.

Living life fully. Monday 3/19, my maternal cousin Pastor Andrew Chao and his wife Emily came from Houston for a visit. They stayed with us and we brought Mom here for a few days. We shared some quality precious times together. Showcasing Bainbridge Island, we toured our BI Museum of Art, our Bloedel Reserve, the Japanese Exclusion Memorial, drove around the environmental outdoor experience center and the Lynwood shopping area. They left this morning. We had a very good reunion.

Again, thanks for visiting. Thanks for your loving care and concerns.

Health Update: 8 March 2018

After completion of 6 cycles of treatment with Abraxane, Irinotecan, Leucovorin and 5-FU, Dr. Picozzi ordered a CT scan for today’s visit. We arrived at 8am, had blood drawn, port reassessed, and proceeded to drink 24 oz contrast liquid and concluded with an uneventful scan procedure.

We were again placed in our usual private infusion room and shortly thereafter, Dr. Picozzi arrived and consulted with Linnea and me. Basically, he was feeling upbeat and eager to report to us a little good news. The blood works were acceptable, the CA 19-9 is treading down significantly for the first time in a long while, from over 3300u to 1700u. AND, the CT showed slight decrease in size of all metastatic lesions! Possibly beginning to be heading toward the right direction, hopefully!!!

Thanks for all the Good Karma you all are sending my way.

Brother Dan figured it out that I have about 4 days of improved energy level prior to each Chemo session. He arranged for Linnea and me to fly to Mesquite, NV to soak in a little sun and appreciate some new scenery. (We left on Saturday 3/3 and returned on 3/7, just in time for the 3/8 Chemo session.) Of course, exercising in the form of golfing on courses that are ‘playable’ was NOT a disincentive. We played 2 rounds on the Conestoga course with roughhewn terrain, flashy bunkers and mountain panoramas on Sunday and Tuesday, perfect remedy to our rainy NW. On Monday we toured St. George, UT with its Mormon Temple and Tabernacle, then we drove to the Zion National Park, covering three states by intruding through a small section of AZ.

You are now up-dated. All’s Good. Thanks be to God.

p.s. after returned home we were told that was two pipe bombs found incidentally while a passerby noted someone dropped a bag and left. While we were visiting St George. The authority was notified, and they took the bag to the football field and blew it up. It was activated and was filled with shrapnel and nails, and other sharp implements. Idyllic little quiet Mormon town St. George!

Thanks to all of you, my fervent supporters and cheer-leaders.

Family Life after 1972

My more astute readers might have observed that I have not included any stories about my family life once I became a young husband and father. Interracial marriages in 1972 were not common nor well accepted in many circles. Societal stresses, professional pressures and cultural differences in child-rearing created a lot of disharmony, divisiveness and ultimately a divorce in 1994. Like many parents, there are things that I wish that I had done differently, but I am immensely proud of my three children, all well-educated, accomplished adults now. They and my equally accomplished two step-sons are beautiful human beings, making significant contributions, not the least of which is providing Linnea and me eight amazing grandchildren ranging in age from nearly one year old to twelve years old. I have told all our children that their childhood is their story to tell; obviously, each will have his/her own unique perspective. Stand by!

While I’ve touched on some travels that our family did after we came to America since my dad wanted to introduce us to all the national parks, the travels that I did with my own children tended to focus on locations that provided summer water sports and winter snow sports. For many reasons, we didn’t engage in a lot of sight-seeing. After Linnea and I married in 1995, we were fortunate to have excuses to travel for family weddings and graduations all around the USA, including Alaska and Hawaii and then off to Europe when our oldest embarked on a career as an Army officer and provided a home base for us overseas. Spending lots of time in Germany gave me an opportunity to practice my high school German which tended to create more problems than solve them! On our last trip to Europe we had a harrowing experience with the Budapest transit gendarmes who, because we couldn’t read the instructions, told us we failed to get our train ticket stamped and therefore seized our passports until we basically had to pay them a generous bribe. It was a very distressing late-night scene and discouraged us from using any public transportation while visiting Hungary. A gotcha trap! Attending a batch of plays in London and a series of operas in Vienna were also real treats. Besides our trips to China, where luckily language was not an issue, our most memorable adventures were exploring Machu Picchu and the Galapagos. That was a very special tour.

Health Update: 22 February 2018

I had another Chemo session on Thursday, 22 Feb. For reasons puzzling me, I was a little apprehensive about the treatment this time, dreading or fearing that something was not going to go right. I was sleepless the night before. We were on the 7:05 boat for an 8:00 am appointment. First up was the blood draw and results were slightly improving. The Cancer marker actually decreased by 10% compared to two weeks ago, treading down for the first time in several months. Hopefully this is a good sign.

We had a thorough and open discussion with my Infectious Disease specialist, Dr. Woolston. The theory is that if the Chemo is effective, punching holes through my inaccessible ’egg shell’ tumor outer lining, the contents may consist of dead cancer cell, as well as my own battling blood cells, and most likely bacteria, which caused me to be hospitalized for systemic sepsis a few months ago. To counteract the bacteria, I have been infusing daily with antibiotics through my Power Port for over ten weeks in addition to taking the extremely bitter oral pill of Flagyl. On the one hand, things seem stable, why change? However, perhaps the current germs also have mutated over this period and have become resistant. Consequently, at the strong suggestion of Dr. Woolston, we dropped the Flagyl and switched to a different IV infusion medicine.

Dr. Picozzi, according to his treatment procedure, has me scheduled for another CT scan on my next visit, 8 March. Consequently, after my discussion with Dr. Woolston, I felt better to try this new more potent broad-spectrum antibiotic giving about two weeks to possibly show something on the next scan. Dr. Woolston also hinted that it may also enhance my ability to taste food. We are on this new regimen and so far, so good.

Treatment at the infusion center went well and relieved all my unnecessary anxiety. Feeling energetic, we finished some business at The Compass Housing Alliance and went grocery shopping at Viet Wah Chinese grocery in preparation of the Hinz visit. We returned to VM to pick up some meds and I had a very good pastoral visit with a dear family friend the Rev. Jimmy Hao there at the VM waiting area.

My brother, Dan had come from OH in early February to ‘downsize’ our Mom’s Tacoma Lutheran Home apartment where she’d been since 1997. He arranged and moved the heavy furniture, but left the sorting of clothes, kitchen, etc. to Kim Hinz, my twin William’s daughter. She came the day Dan left and did a terrific job, working for nearly three weeks! Her two collegiate daughters and her husband (and my Mom) came over this past week-end to spend time with Grandma, me and Elizabeth. Their presence boosted me with energy and we all had a great time. Chu can cook so I served them family favorite Chinese foods accompanied with family stories that Mom and I shared. A very receptive audience! It was a special, memorable time together. All company left today. Now I am writing my delayed report.

The first few days after Chemo, I do feel very good. Two days after infusion, my 5 FU pump is disconnected and I receive a Neulasta injection. Twenty four hours after the injection, I begin to experience severe soreness of 7/10 and pain of 5/10 of both knee joints, total weakness of both my gastrocnemius muscles (calf), and numbness and tingling of my feet. I hardly can walk and feel totally uncomfortable for about three days. Post treatment Day 7 on, I have thinning of my mucosal membrane throughout the digestive system and cannot eat anything ‘hard’. With the best possible oral hygiene, I have avoided getting mouth sores, but I am limited to soft steamed eggs or rice porridge. (I am tired of eating eggs.) I do get a little recovery of 3-4 days, and we start over again.

My dear brother Dan has arranged a short golfing vacation for us in Mesquite, NV next week end before my scheduled 8 March treatment. We are hoping for some warm weather and good chipping within 100 yards and putting! (It’s been uncommonly cold and snowy here.)

Hope everything goes as planned. We take one day at a time.
Deep felt appreciation again sincerely from my heart.
I’ll be in touch.

The Color of Water

After nearly a year in America, in the summer of 1956 we visited Uncle Kwong and Auntie Sheila who was my Dad’s oldest sister sibling. The two of them came to America as medical residents earlier in 1948 and were in Springfield, OH when my Dad arrived to attend seminary at Wittenberg College, Hama Divinity School in the fall.

After training, Uncle Kwong when he started his career, he contracted a position near Birmingham, AL. He served two hospitals as their sole practicing pathologist. and they lived in Anniston, AL.

We drove to see them as our first summer vacation. They had two sons, Henry, two years younger than William and I, and Cecil, a little younger than Dan. Elizabeth was just one year old at that time.

Since we lived in Springfield and were the only Chinese family at the time, it appears we were all treated as benign curiosities, ‘people of interest.’ Dad was the only Chinese pastor serving an all-white Lutheran Church, (mostly German.) We truly cannot recall that we were subject to any significant discrimination. Perhaps those who had such feelings avoided us.

Our trip to Alabama was an eye opener. When we arrived at the Kwong house, we went to their grocery store. We kids were running around, and I noted that there were separate drinking fountains, side by side. One was labeled White, and the other Colored. By now, my mastery of one year of English allowed me to read. I ran to Mom excitedly and proclaimed, ‘America is truly great; they even serve soda water at the drinking fountain.’ I quickly ran over and pushed the button. To my disbelief the water was simply clear! Mom quickly came behind me and pulled me away. Scolding me not to fool around but pay more attention, that fountain was meant for the black people. The Kwongs didn’t use fountains when they shopped but waited to drink when they were home. We learned that they avoided situations where things were obviously segregated, not knowing how white people would react.

Anniston had a recreational area in the hills, I remembered it as Cheaha Public Park. There was a median size lake where people swam. The Kwong boys were obviously experience swimmers. Immediately they dove off a large rock into the water and were on the other side. while we were just getting into our suits. Dan went into the water first and was slowly walking towards the Kwongs and I was behind him. Suddenly he disappeared under the water because the ledge suddenly sloped away. I was still standing on the ledge and thinking that I could grab him and pull him back. I reach as far as I could and could not reach him. Without hesitation, I took a deep breath and dove into the water and pull Dan’s hair and brought him up to breathe. But now I was in deep water and I don’t swim either. But out of nowhere, William came and pulled both of us out to the ledge. The Kwong boys thought we were hilarious and thought everyone could swim!! We played in shallow water for the rest of the time and had fun because it was ghastly hot and humid.

Before we left, My Dad wanted to take everyone to a restaurant and asked Uncle Kwong for a recommendation. To our surprise he said they only ate at home because they don’t know which restaurant may not serve them and he never wanted to create a scene. Dad insisted that we’d eat somewhere and said before we would go in, we ‘d ask. We were very cordially served at a country buffet diner.

That was Alabama in the 1950’s.

Health Report: 8 February, 2018

We left Bainbridge on the 7:05 ferry to Virginia Mason for an 8:00 am appointment slightly late. Had 2-16 oz clear fluid to consume one hour prior to the CT Scan with contrast at 9:00 am. Blood was drawn in the interim. After the scan, we returned to the Oncology Infusion Center and was positioned in a relatively large room.

Shortly thereafter, Dr. Picozzi arrived. He reported that my blood work indicates a ‘GO’ for Chemo treatment today. We again questioned him about the CA19-9 exponential rise, but he tried hard to reassure us that based on his experience we should not place too much credence on that number. At the time of his consultation today’s result was not yet available.

After about another 30 minutes, Dr. Woolston reported that my blood results were stable and encouraging from the infectious disease perspective. That I had not developed any fever or side effects were all good. The non-descriptive metastatic ‘abscess’ at the dome of the liver appeared to have increased in size slightly. Possibly it may represent further tumor growth, or just as likely that it’s a more widened ‘battle field’ of antibiotic activities. We concurred that since I am managing my current regimen, I wished to continue infusing the daily IV antibiotics myself until/or if I develop sensitivity or intolerance. I asked if there’s maximal dosage I am approaching, she assured me that was not a concern.

We tolerated the Chemo infusions well. The Irinotecan lived up to its reputation today. Possibly my drinking 32 oz of fluid prior to the CT scan and the added fluid of Chemo infusion plus my consuming a can of Canada Dry Ginger ale all contributed to my ‘I ran to the can’ multiple time within hours.

Presently I am wearing my slow infusion pump of 5-FU on my belt loop until Saturday. I’ll get another injection of the magic WBC booster Neulasta, price two weeks ago was $17000, mysteriously today it was lowered from to $6300 – $6600 range for the 6mg/0.6ml shot. Must not be more than I who complained. Two days after the Neulasta shot, I do suffer severe bilateral knee pain/soreness, gastrocnemius (calf) muscle weakness and planta fasciitis of about 7 out of 10 for 3-4 days, making resting and sleeping very difficult. I find myself rather grouchy on those days. Not my finest moments.

Further good news, the CA 19-9 marker rose only less than 70 points, (as contrasted to a rise of 1200+ points at my last appointment) this change is most likely within margin of error tolerance. At the least, it appears stabilized for this period of time. Thanks be to God. I feel much less anxious and more composed with today’s finding.

Thanks deeply again to ALL my friends and relatives reading this because I cannot justly and honorably express my appreciation to you.

Just a reminder for those interested, February 16,1918 is Chinese New Year Day. (Remember, each mascot is matched with a known element of Fire, Earth, Metal {literally gold}, Water and Wood in ancient time to mark the passing years. Each complete cycle would represent 60 years, (two life spans). This year is considered Year 4715 according to the Chinese Calendar, Round #785, cycle #11, year of the Golden Dog, (Golden Retrievers and Yellow Labradors would be much sought after.) Of course, Chinese history dates much further back before this calendar accounting system was created.

Gong Xi Fa Cai, Prosperity, Pleasure, Joy and Cheerfulness; Most of all Good Health for the coming year and beyond.

My LOVE to ALL !!!