November, 2016

Good Day With The 1st Vaccine Shot

It was a good day. I received the first out of 5 DC vaccine shots.
George and I started this special day by driving to see beautiful autumn foliage. image

 

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This was one on my bucket list, and I was kept in awe with the breath-taking sceneries, which were like God’s gigantic canvas with countless warm colors with serenity and great elegance. I thanked God that I was here, a huge green land, in this season.

At 3pm, we arrived at NCI clinic. I was escorted to a room where were three big reclining chimo chars and told to wait for the vaccine to arrive.

“OK. Are you ready?” It was about 4:50pm, finally a nurse came with the vaccine. Slowly she injected the vaccine, one billion dendritic cells each in the two spots of the right inner forearm right under the skin. I felt pinched and the spots were getting bumpy and red immediately.
” Looks good, ” said she.

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She checked my pulse and blood pressure every 15 minutes for an hour, and then I was dismissed.
Several hours after the injection, now my arm is tender, but this is expected.

I pray that this two billion dendritic cells, can recognize cancer cells and command the T-cells to attack and destroy.

5th Day From the 1st Vaccine Shot

It has been 5 days since the 1st vaccine shot. The tenderness and redness are about gone, but last Friday and Saturday, day2 and day 3, I felt lethargic and stayed in bed almost a half day. Since the cough is continually worsening causing headaches like being hit by a hammer, and the triggers of vomiting, I thought the fatigue was also due to cancer progression. Yet this could be a side effect of the vaccine because after the rest, I felt better.

The Dendritic Cell (DC) vaccine doesn’t attack cancer cells directly, but they send message to T-cells, one of the immune systems, to attack the cancer cells.
So it takes a few months to see the result according to the doctor.

If the cancer cells are destroyed by T-cells, the inflammation will happen around the tumors as a process of healing, which may cause fever, pain, and possibly worsening the cough.

I think it’s still too early to see any response, but for a few days, the sharp pain around the chest wakes me up during the night. If this is not because of the vaccine, then it must be cancer.

Two weeks ago, after the CT scan, I had some UTI ( Urinary Tract Infections) symptoms. Being afraid of having an infection, which might have affected the next CT and then the vaccine shot eventually, I took an antibiotic on my hand. It helped, but now again, I have a difficulty of urination along with a back pain. This could be caused by the contrast of the CT. I will go to a family doctor tomorrow to have a urinary test.

I emailed the update to Dr. Wood at NCI, and will see what she would say.

Retreat

Since the cancer diagnosis in 2010, for the first time I declined a piano student, who wanted to take lessons. Up to now each time when someone asked a piano lesson, I’ve wondered how many years I could teach, but took them thinking positively. Yet this time, the nasty cough, which is not getting better at all despite the prescribed drugs, made me think taking a new student is not fair for the child.

I decided to step down from playing piano at the church as well as volunteer interpretation for cancer patients.

It is so sad, but hoping someday I get better, I decided to retreat. My cough stops only when I sleep and eat and that is Mercy of God.

Worst Traveling Season

My next visit to Bethesda is right after the Thanksgiving (the 4th Thursday in November), and George and I have to leave the worst day of the year to travel, the Sunday after Thanksgiving.

Usually it takes about a half hour to get to LAX, the airport, from our house, but a friend who drove to LAX right after Thanksgiving last year told me it took 2 and a half hours!  According to her advoice, we have to leave at 5am in order to catch the flight at 8:15am.

The following appointment is a week before Christmas and the January one is right after the presidential inauguration. I have to leave on Sunday the same weekend of the inauguration.

I was told by the government travel agent that she could not perches my flight tickets until a week before my appointments, but if I wait until a week before the appointments for the coming holiday season, I am afraid that there would be no way to get George’s tickets but also even my tickets, so I begged the patient coordinator to input the visiting schedule in the traveling computer system.  Thankfully at least I could reserve the flights and hotels.

Now the main concern is my worsening health.  Each visit will be a big challenge.  More than a year ago, however, God had provided us the financial provision to travel to NCI.  He has a plan, which won’t harm but prosper me. He is in this choice. Believing so I wait for patiently to be healed from the cough and the cancer.

Received New Cough Medicine

It was Monday morning when I emailed Dr. Wood at NCI ( National Cancer Institute) to change the cough medicine to something stronger. She immediately replied to me, and after 3pm, she told me I would receive the new cough syrup on the 16th or at latest the 17th.

As East coast is three hours ahead of West coast, probably the pharmacy was close to the end of office hours.

Yet surprisingly I received the syrup the next morning by FedEx even before 10am!

Kaiser, my home hospital also has a drug delivery service. If I order refills on line, I don’t need to go to the pharmacy to pick them up, but the refills will be delivered. It’s very convenient, but takes 2-3 days. NCI is on the other side of the US. 8 states are between us. I was very impressed with this speedy distribution system.

The new syrup is a narcotic including codeine. I started taking it right away expecting to see the quick effect. I’ve experienced stomach upset, nausea, and mild light headedness but the cough hasn’t changed so far.

As having an ice cube in the mouth or chewing a gum helps a little bit, besides sleeping, right now this is the way to suppress the cough in public.

God, come quickly to rescue me!

Now It’s Stomachache

The day before the Thanksgiving, I was at the clinic from the morning. The day before thanksgiving last year, also, I was at the urgent care, I think. That time I had UTI ( urinary tract infection), but today I have stomachache and nausea.

The last four weeks since the 1st vaccine shot have been rough with different pains, aches, discomforts, and a hideous cough. When I stopped chemo almost two months ago, I thought now I would be free from all the side effects including diarrhea and nausea, but I was wrong. Those symptoms have still appeared often and especially from last week when I started a cough syrup with Codeine, the pain and nausea became constant. First I thought those were side-effects of Codeine, so I stopped the syrup for two days. Yet the symptoms continued, and since last night I have been in pain.

Today’s doctor said that Codeine does nothing to do with the pain or the nausea and he hoped the vaccine would kick in eventually and take care of the problems. In other words, he thinks the cause of the pain
is cancer progression. If the vaccine is not working (yet?), cancer is completely free to march every direction in my body, so it’s not surprising to see new symptoms.

The cough, like a machine-gun assault , doesn’t seem to get better, either, even with Codeine, and a couple nights ago, a sudden relentless cough attack choked me for a few minutes. It was scary.

I hope Pepcid, an antacid medicine, will ease the pain, so I can enjoy tomorrow”s Thanksgiving, but probably I have to ask the kids to cook Turkey dinner tomorrow for the first time.

Great Thanksgiving With Great Family

I could have another good Thanksgiving without missing the turkey dinner!

“How can I help you?”
“ You sit here and tell me what to do.”

George, and three kids were all so helpful considering me all the time all day. At the dinner table that was my first thanks to share. I love Thanksgiving, which is a great family time, but this year I felt God’s Grace more than ever.

Once Soh arrived with his wife Pinky and his beloved dog Illy from San Francisco last Sunday, the quiet house turned into a festival mode, and as Roy also came over at night the house became full of energy. Cooking dinner for 5 requires more work than for 2, but wanting to please the kids, I didn’t mind it at all.

“ Mom, you will relax now. We’ll wash dishes.”

Once the dinner was over, now the kids took over my role, and treated me like a special guest until they left yesterday afternoon.

Maybe because Soh lives at a distance, but saying, “ I want to spend the time with you. What would you like to do? “ he took me out for lunch and even on a half-day drive. Listening to a conversation that my house might need an air filter, he quietly ordered it, which arrived today. I was deeply touched by his care.

George, who could not sleep enough the night before I visited the clinic because I woke him up many times due to the cough, nausea, and stomachache, was happy to drive me to the clinic, and stayed with me for a half day at the clinic

Thankfully the prescribed Pepcid is controlling the stomachache and the nausea, but the cough hasn’t been improved, and I’ve been laying down on the couch most of the day. Yet, our family made me so happy. I don’t deserve this kind of treatment. I know so many better mothers and wives than me. This must be God’s Grace. He is with me and loves me giving me such a great family. It was one more great Thanksgiving after all!

Beaten Like A Punch Bag

We could beat the rush hours at the airport, but as unexpected ordeals happened, although I could get the 2nd vaccine shot, this time it was a rough visit at NCI.

Lost Sight

After a 5 hour flight, I was coughing hard but other than that I thought I was doing OK. Yet when we got a rental car center, all of sudden my left eye became blind. If I closed the right eye, I could see  nothing except about 10% of the top part. I blinked several times, and then gradually the vision came back. It was about a couple minutes or so but immediately it made me worry about a brain metastasis.

Monday following after a lab and ECHO( checking the heart function), at the doctor’s exam, I informed about the blind episode as well as the increased pains and GI problem including the nausea to Dr. Wood. Then she referred me to an ophthalmologist to have a thorough exam.

Spotted strong lights on my eyes, the exam was so tough and long that I thought  I would become really blind.
After 5pm, finally the exam was over and I was told that the result was negative. The ophthalmologist explained that somehow the blood flow  to the eye was blocked probably, and it was really good that the flow came back quickly.  He ruled out brain metastasis as I asked,  so it was a long day but I  went back to the hotel being relieved.

Call 911

Then that night, I took oxycodone – the new narcotic cough drug – after dinner. The drug made me so sleepy that I slept for long hours without coughing.  I woke up in the middle of night, and  took the 2nd dose of the cough pills, which was a little before 3am I think. Yet this time the pill made me dizzy and nauseated quickly.  Zoflan, the anti nausea drug, didn’t help and the nausea was getting stronger and stronger. My upper left side became numb and tingling, and even my throat was choking too. Moaning and agonizing  around 4am I asked George to call Dr. Wood.  She told to call 911 and go to ER.

So I was carried to ER. By that time I was breathing better, but still felt horrible with nausea, which made me almost pass out.  Despite of that,  What I received were not  the treatment, but only exams.  Finally a young female doctor came and told me that she would like to take a chest CT scan because she was afraid that I might have blood clots in the lungs.
I came to ER to solve the nausea, not for the CT.
“No. I had two CTs in October already and will have next one in December. Unless My doctor, Dr. Wood, said ‘yes’, I refuse the CT.”
I was left on a gurney without even a vital sign monitor until the morning and told to go to NCI for the chest CT because Dr. Wood ordered it!

Dr. Wood said the blind incident might have happened because of a blood clot and the long travel from CA might be a cause. It was important for her to rule it out by taking the CT.
So I had to do it as well as the ultrasound of the legs. The results were both negatives as I expected.  I wish I had stayed on the bed of the hotel. Yet If I had a blood clot, probably I would not be able to receive the vaccine,  , so I I have to be thankful with the result.

My immune system will respond quicker than the 1st shot this time, and then cause the inflammation, which will make the pain and the cough worse according to Dr. Wood.  Controlling the cough is very important because otherwise it will wear me out very fast, but at the same time, if the cough drug makes me so sick, I will suffer anyway.

Receiving many medications for the coughs, pains, and anti nausea, it is my assignment to find the right balance of those to get the best result.