Dad, or as I affectionately like to call him - Grandpa Neal - first learned of his lung cancer in October 2014, when he was only 72 years old. He had a cough that would not go away, so he went to see his Kaiser Permanente doctor. After doing a chest X-ray, he discovered that he had a tumor in one of his lungs. He was shocked to hear this, as he had only smoked for one year in his early youth and was in excellent shape (having run multiple marathons and half marathons). He was overall in perfect health, and this diagnosis came as a severe shock.
He still wanted to continue dancing to Zumba and playing his accordion. Cancer treatment would slow him down too much.
He still wanted to continue dancing to Zumba and playing his accordion. Cancer treatment would slow him down too much.
We had multiple discussions with Grandpa about his medical treatment. Inna and I felt that he should undergo surgery immediately to remove the tumor before it had a chance to spread to other organs. However, this would involve some risk and would necessitate a long recovery. Removing the tumorous piece of his lung would reduce his lung capacity and would require significant rehabilitation. Despite many attempts to try to convince him, Grandpa refused to undergo surgery (as he had never had surgery in his life).
In November 2015, Grandpa tried to explore other possible lung cancer treatments, including positron radiation on his tumorous lung. However, when an MRI was done, it showed that the tumor was touching nearby arteries, and the doctor felt that there was too much risk in doing radiation.
In late December of 2015, Grandpa started to cough up blood and finally decided, after many conversations with us, to undergo surgery on his tumorous lung. However, after doing an MRI and an X-ray, it was found that the cancer had spread to other organs, and the surgeon refused to operate. Once cancer spreads to other organs, removing it from just one organ is no longer sufficient. Since all Kaiser's doctors offered was standard chemotherapy, we decided to look for more promising therapies.
In reading the Wall Street Journal, I learned that a new drug called nivolumab was found to work on cancer patients with melanoma and lung cancer. It was approved for melanoma but was still experimental for lung cancer. It worked on cancer patients with a specific genetic defect, and I wanted Grandpa to try this new wonder drug. After reviewing ongoing drug trials, we found a nivolumab trial at Stanford University Hospital.
Enrolling in Stanford's drug trials was an enormous hassle. We first had to get approval from Kaiser Permanente (Grandpa's current medical provider) so that Stanford would manage all of Grandpa's cancer treatment and would bill Medicare directly. At first, Kaiser refused to grant Grandpa this ability, and Stanford would not allow Grandpa into the drug trial without Kaiser's permission. Finally, after writing multiple letters to Kaiser, Grandpa was allowed to enroll in Stanford's drug trial.
Stanford's facilities were much superior to Kaiser's. Stanford's doctors did not trust any of Kaiser's tests, so Grandpa had to do all of the blood tests, X-rays, and MRIs before initiating the nivolumab drug trial. We met with Dr. Heather Wakelee - Stanford's oncologist - and her many assistants and discussed the trial. It would be a blind test trial - we would not know whether Grandpa would get selected to take nivolumab or one of the other chemotherapy drugs.
After some waiting, we were delighted to hear that Grandpa was chosen to get nivolumab every two weeks. The trials started sometime in March 2016, and I was surprised to learn that Grandpa did not experience any side effects. It was very positive news, given all we have read about possible side effects.
After a month of nivolumab shots, Grandpa had to do a series of blood tests and X-rays to determine how the cancer was reacting to being treated with nivolumab. We learned that Grandpa's lung cancer was not growing - but it was not shrinking either. However, there was a concern that he had a small cancer growth in his liver.
After a couple of months of treatment with nivolumab, Grandpa started to complain about pains in his legs. He thought it was some muscle cramps, but we eventually discovered that there was a tumor in his bones. For some reason, the Stanford doctors failed to notice the cancer growth in his leg, even though it was clearly visible in the X-rays (such incompetence!). Grandpa was extremely angry at Stanford's physicians - how could they miss such an obvious problem, especially since he was complaining about his leg pains to them often?
Grandpa went back to Kaiser, and the doctor there suggested that he get radiation therapy to kill the cancer in his leg. Doing so required stopping all "nivolumab" treatment. By then, he decided to stop nivolumab altogether because he thought that it did not work. I believe that this was a colossal mistake because nivolumab did help to keep the lung tumor in check.
After completing radiation therapy on his leg, Grandpa discovered that he also had pain in his ribs. Another cancer was found and again treated with radiation therapy. However, this second treatment really weakened Grandpa. He lost a lot of energy and vitality and no longer had the energy he used to have to dance to Zumba or play his accordion.
His health started to decline rapidly after this second treatment of radiation. We had to take him to an emergency room because he passed out in his apartment while talking to us about getting additional in-home support services.
We noticed that he started to get confused easily, and all regular activities took much longer for him to do (like making a meal or washing dishes.
On Friday, September 4, Inna planned to take Grandpa to Kaiser for a blood transfusion because Grandpa's iron level was low and the doctors felt he could benefit from additional iron. When she got to his apartment, she found that Grandpa had hurt himself (falling) and he could no longer walk. She called 911, and the emergency team brought him to Kaiser's emergency room. Since Grandpa's left arm and leg (and face) seemed paralyzed, the physicians thought that he had experienced a stroke. We later learned that it was not a stroke - but cancer - that had spread into the left lobe of his brain, which was disabling his activities.
Since Grandpa was so weak, he could not receive chemotherapy. Grandpa's Kaiser doctor, Dr. Myron Kwong, said that his best option was to go to a nursing home, where he could get 24-hour care. We found a bed in the Mission Skilled Nursing facility, and he was transported there.
Grandpa was initially a bit confused about how he got there, and he hated that he could no longer move his left arm. His vision rapidly declined (because of cancer), and he could no longer see very well. He still liked listening to music and could see us when we were close. His mind was still fine and active, and he made many calls to his friends and relatives.
The food at Mission Skilled Nursing is very processed (for toothless patients) and looks and tastes horrible. Grandpa refused to eat it, so we brought him fresh Borscht and other Russian delicacies from home. He really enjoyed eating them instead of the atrocious food provided.
I got the dreaded call at 5:30am on Wednesday, September 30, and rushed to Mission Skilled Nursing. Grandpa died at 5:38am on Wednesday, September 30, 2015. Unfortunately, I did not make it in time to see him. I was told by the nurse there that his breathing slowed down and then stopped.
It was a sorrowful moment for me.
In late December of 2015, Grandpa started to cough up blood and finally decided, after many conversations with us, to undergo surgery on his tumorous lung. However, after doing an MRI and an X-ray, it was found that the cancer had spread to other organs, and the surgeon refused to operate. Once cancer spreads to other organs, removing it from just one organ is no longer sufficient. Since all Kaiser's doctors offered was standard chemotherapy, we decided to look for more promising therapies.
In reading the Wall Street Journal, I learned that a new drug called nivolumab was found to work on cancer patients with melanoma and lung cancer. It was approved for melanoma but was still experimental for lung cancer. It worked on cancer patients with a specific genetic defect, and I wanted Grandpa to try this new wonder drug. After reviewing ongoing drug trials, we found a nivolumab trial at Stanford University Hospital.
Enrolling in Stanford's drug trials was an enormous hassle. We first had to get approval from Kaiser Permanente (Grandpa's current medical provider) so that Stanford would manage all of Grandpa's cancer treatment and would bill Medicare directly. At first, Kaiser refused to grant Grandpa this ability, and Stanford would not allow Grandpa into the drug trial without Kaiser's permission. Finally, after writing multiple letters to Kaiser, Grandpa was allowed to enroll in Stanford's drug trial.
Stanford's facilities were much superior to Kaiser's. Stanford's doctors did not trust any of Kaiser's tests, so Grandpa had to do all of the blood tests, X-rays, and MRIs before initiating the nivolumab drug trial. We met with Dr. Heather Wakelee - Stanford's oncologist - and her many assistants and discussed the trial. It would be a blind test trial - we would not know whether Grandpa would get selected to take nivolumab or one of the other chemotherapy drugs.
After some waiting, we were delighted to hear that Grandpa was chosen to get nivolumab every two weeks. The trials started sometime in March 2016, and I was surprised to learn that Grandpa did not experience any side effects. It was very positive news, given all we have read about possible side effects.
After a month of nivolumab shots, Grandpa had to do a series of blood tests and X-rays to determine how the cancer was reacting to being treated with nivolumab. We learned that Grandpa's lung cancer was not growing - but it was not shrinking either. However, there was a concern that he had a small cancer growth in his liver.
After a couple of months of treatment with nivolumab, Grandpa started to complain about pains in his legs. He thought it was some muscle cramps, but we eventually discovered that there was a tumor in his bones. For some reason, the Stanford doctors failed to notice the cancer growth in his leg, even though it was clearly visible in the X-rays (such incompetence!). Grandpa was extremely angry at Stanford's physicians - how could they miss such an obvious problem, especially since he was complaining about his leg pains to them often?
Grandpa went back to Kaiser, and the doctor there suggested that he get radiation therapy to kill the cancer in his leg. Doing so required stopping all "nivolumab" treatment. By then, he decided to stop nivolumab altogether because he thought that it did not work. I believe that this was a colossal mistake because nivolumab did help to keep the lung tumor in check.
After completing radiation therapy on his leg, Grandpa discovered that he also had pain in his ribs. Another cancer was found and again treated with radiation therapy. However, this second treatment really weakened Grandpa. He lost a lot of energy and vitality and no longer had the energy he used to have to dance to Zumba or play his accordion.
His health started to decline rapidly after this second treatment of radiation. We had to take him to an emergency room because he passed out in his apartment while talking to us about getting additional in-home support services.
We noticed that he started to get confused easily, and all regular activities took much longer for him to do (like making a meal or washing dishes.
On Friday, September 4, Inna planned to take Grandpa to Kaiser for a blood transfusion because Grandpa's iron level was low and the doctors felt he could benefit from additional iron. When she got to his apartment, she found that Grandpa had hurt himself (falling) and he could no longer walk. She called 911, and the emergency team brought him to Kaiser's emergency room. Since Grandpa's left arm and leg (and face) seemed paralyzed, the physicians thought that he had experienced a stroke. We later learned that it was not a stroke - but cancer - that had spread into the left lobe of his brain, which was disabling his activities.
Since Grandpa was so weak, he could not receive chemotherapy. Grandpa's Kaiser doctor, Dr. Myron Kwong, said that his best option was to go to a nursing home, where he could get 24-hour care. We found a bed in the Mission Skilled Nursing facility, and he was transported there.
Grandpa was initially a bit confused about how he got there, and he hated that he could no longer move his left arm. His vision rapidly declined (because of cancer), and he could no longer see very well. He still liked listening to music and could see us when we were close. His mind was still fine and active, and he made many calls to his friends and relatives.
The food at Mission Skilled Nursing is very processed (for toothless patients) and looks and tastes horrible. Grandpa refused to eat it, so we brought him fresh Borscht and other Russian delicacies from home. He really enjoyed eating them instead of the atrocious food provided.
I got the dreaded call at 5:30am on Wednesday, September 30, and rushed to Mission Skilled Nursing. Grandpa died at 5:38am on Wednesday, September 30, 2015. Unfortunately, I did not make it in time to see him. I was told by the nurse there that his breathing slowed down and then stopped.
It was a sorrowful moment for me.
