Fighting Cancer, Part 5 of X: Chemo, Chemo, Chemo….

• February 19, 2014: Mom has a brain tumor.
• February 22: Mom has brain surgery. Surgeon thought he removed all/most of the tumor.
• March 17: First round of chemotherapy. Mom's kidneys are almost destroyed from methotrexate poisoning.

That's where we left off. Poor Mom. Methotrexate (MTX) is a chemo drug and was supposed to help her by killing the cancer. But instead it almost killed her. And she didn't get even a full dose of MTX: She got 3 g/m², when you're supposed to get 8 g/m².

What now? Try MTX again? Something different? Give up? Dr. Quadro, the oncologist, felt MTX was still our best chance. We'd wait for Mom's kidneys to heal, then try again with a lower dose of MTX (1.5 g/m²), given over a longer period of time (24 h instead of 4 h). The doctors made clear that there was a "risk of renal failure."

I still wanted Mom to fast during chemo, and this time more stringently: *Only* water, not even organic chicken broth. And for a longer time. Like Dr. Quadro, I felt fasting was still our best chance. In hindsight, I'm not sure I understood how damaged Mom's kidneys had been. If I had, I might not have pursued the fasting so much. Then again, it was ultimately Mom's intuition and decision.

We had to wait over a month for Mom's kidneys to heal, so we could try chemo again; ideally it'd be every 2 weeks.

On top of all that, I wouldn't be with Mom in the hospital, again. Last time I was at the Game Developers Conference (GDC). This time, Mom had previously arranged for her brother to fly in from Seattle and remodel part of the house. I would be helping full-time on the construction.

What happened?

• April 25: Second round of chemotherapy. No side effects!

The construction was quite a handful, actually. We got way behind schedule, and we were probably over-budget. But I learned a lot, and no one got seriously hurt.

Here's Mom in her renovated bedroom. Can you see her? Mom's vision was getting a lot worse, so we replaced the dark carpet with brighter laminate flooring. Then we added the track lights and the pendant light.

And we knocked out one wall and put in two more….

Since chemo round 2 went a lot better, should we try more MTX? Dr. Quadro wanted another MRI, since Mom hadn't had one since going to the ER. Maybe the MRI would show that the surgery plus the MTX had gotten rid of the tumor.

• May 20: MRI of Mom's brain shows tumor still present, slightly smaller than before surgery.

Here are the pre-surgery (Feb. 20) and current MRI (May 20) pics, side-by-side:

If you think about it, this is at best, odd, and at worst, scary. The surgeon thought he removed all of Mom's tumor, which was large. And we had two rounds of chemo. Shouldn't the tumor be a lot smaller or completely gone?

Possible explanations:

• The tumor is gone, and that's just scar tissue. (A PET scan later would rule this out.)
• The tumor was mostly removed, but it grew back very, very quickly, and the chemo shrunk it a little.
• The tumor was mostly removed, but it grew back very quickly, and the chemo didn't do much.
• A relatively large portion of the tumor wasn't removed (perhaps it looked like regular brain tissue), so the tumor grew back "only" quickly, and the chemo may or may not have done much.

As you can see, none of those explanations is comforting. Mom's cancer is Primary CNS Lymphoma (PCNSL), and it turns out that lymphomas can grow very rapidly.

But if the lymphoma can grow from nothing to that size in 3 months, what happens in another 3 months? Or even 1 month?

We decided to try more chemo. And fasting.

• May 27: Third round of chemotherapy. Back to 3 g/m² MTX. No side effects!

Once more, with feeling:

• June 10: Fourth round of chemotherapy. 6 g/m² MTX. No side effects!

At least we were getting back on track. The original goal of 8 g/m² MTX, every 2 weeks, was in sight. Dr. Quadro's switch from spreading the MTX over 24 hours instead of just 4 hours seemed to work, in terms of Mom tolerating the chemo. And the fasting didn't seem to hurt, either.

But was the chemo really killing the cancer? Had the lymphoma quickly grown back, but now the MTX was killing it? Or was the MTX not working, and the lymphoma was regrowing? We really didn't know, but we kept giving it our best shot.

Next timeline:

• June 24: Fifth chemo. 
• Measuring Mom's urine.
• July 8: Sixth chemo.
• July 10: MRI scan.

Notes:

1. For each chemo, Mom received not only MTX but also a drug called Rituxan. Actually, my old workplace, Genentech, makes it. Rituxan's a great drug, but it doesn't cross the blood-brain barrier that well….
2. Mom would continue fasting for each round of chemo. Starting with the second round, she would fast for 48 hours before chemo, until 24 hours after the end of receiving chemo. With a 24-hour methotrexate infusion, that meant each chemo round, Mom spent AT LEAST 96 STRAIGHT HOURS fasting: no food/juice/etc., only water. 
3. Mom actually kept a very good attitude during this time, as I recall. Where's a Mom happy picture? Here's one!

More construction photos can be seen here.

Fighting Cancer, Part 4 of X: First Chemotherapy: Mystery Solved?!

February, 2014: Mom has a brain tumor.
March 17, 2014: First chemotherapy.

Last time, I presented a real-life, personal medical mystery. Mom's chemotherapy was supposed to happen a certain way, but it didn't. So what happened, and why?

Our specific expectations and timeline were:

1. Mom starts water-only fast for 48 hours before chemo.
2. Geoff goes to Game Developers Conference (GDC) for 1 week.
3. March 17: Mom starts first chemotherapy.
4. Mary stays with Mom in hospital.
5. Muriel and Ron come to town.
6. Hospital staff puts PICC line into Mom.
7. Inject/infuse sodium bicarbonate continuously until Mom's urine is pH > 7.9.
8. Infuse methotrexate at a high dose (3 g/m^2, or 4.8 g in Mom's case) over 4 hours.
9. Wait 24 hours, then infuse leucovorin.
10. Infuse Rituxan.
11. Keep fasting until 24 hours after chemo.
12. Wait a couple days until chemo out of Mom's body. Mom goes home.
13. Geoff returns from GDC.

Knowing something went wrong with Mom's chemo, you might read the above list and jump to conclusions about the cause. For example, why is Mom fasting for chemo, especially her first one (step 1)? Why is Geoff leaving town during that time, especially for a "game conference" (step 2)? If you knew a little more, you might question why we're giving Mom two drugs the first time (methotrexate and Rituxan) (steps 8 and 10)? Why are we changing Mom's pH (step 7)? Why are we starting with a "high dose" of chemo (step 8)? Why put in a PICC line (step 6)?

You can say, "Why is Mom fasting?" in two very different ways. You can ask it as a straightforward question, like when a child asks, "Why is the sky blue?" Or you can ask it as more of a judgment, like when Judge Judy asks, "Why did you leave your child with a stranger?" The problem with judgment-questions (which aren't really questions at all) is that your bias clouds your judgment. If you're actually wrong, or only half-right, you may be too biased to see it.

I emphasize this point because I see it so often, and it's not helpful and can be very harmful. For example, it can lead one to stop something good because of fear: a PICC line, Rituxan, and dare I say, fasting during chemotherapy. If you find yourself jumping to conclusions, take a step back and try to ask the question as a real question.

For Mom's first chemo, all the above are good questions but bad conclusions, because something else in that timeline was the real cause.

Photo break! Mom and our friend Jenny from Hope for Horses in Seattle. January 27, 2014. Full photo here.

The doctors had to figure the cause in real-time, but we'll use hindsight. Mom was supposed to be in the hospital for 4 days. Instead, she was there for 12. Here's the discharge diagnosis after Mom's chemo:

1. Diffuse B-cell lymphoma with central nervous system involvement status post chemotherapy.
2. Acute renal insufficiency secondary to methotrexate toxicity.
3. Wegener's granulomatosis followed by Dr. Barger.
4. Hypertension, started on metoprolol.
5. Hyperglycemia likely secondary to steroid.
6. Hypocalcemia.

What's that saying? 1) is Mom's cancer: PCNSL (Primary CNS Lymphoma). 2) says Mom's kidneys were poisoned, because of the methotrexate. 3) is a pre-existing autoimmune disease Mom's had for years. 4) is, well, hypertension. 5) says Mom has high blood-glucose levels (which can lead to diabetes), probably due to steroids she's on. 6) says Mom has too little calcium in her blood.

What happened is that Mom's chemo started more-or-less as planned. She fasted a little, the PICC line was put in, her pH was increased, methotrexate was given, then leucovorin, then Rituxan. However, Mom's kidneys started to fail. (Our kidneys remove toxins and waste from the body. If our kidneys fail, we need to be put on dialysis or we'll die.)

Why did Mom's kidneys fail? At first, some of the doctors thought it might be Tumor Lysis Syndrome (TLS). But Mom's oncologist, Dr. Quadro, now believes it was due to the methotrexate. However, it wasn't due to the *high dose* of methotrexate (3 g/m^2, or 4.8 g); it was due to the TIME (given over 4 h). For example, if the same dose were given over 24 hours, Mom's kidneys would've been fine. 

That's a very important distinction. We needed a high dose of methotrexate to fight Mom's brain tumor. If one assumes the high dose was poisonous to Mom's kidneys, we could lower the dose, but that would lower the effectiveness of the treatment. A better solution is to maintain the high dose and increase the time over which that dose is given.

You might be wondering, how will increasing the time span affect the effectiveness? Think about that for awhile, and I'll answer at the end. (It's a good mental exercise, in case you ever know someone who has cancer.)

Photo break 2! Me, Jenny, Auntie Nancy and Mom at Hope for Horses. November 6, 2014. Full album here.

It's hard to be certain in medicine. Each patient is individual, and each body changes over time. So why do we think Mom was poisoned due to the time-span of the methotrexate? Why wasn't it the amount of methotrexate? Or the fasting? Because in later rounds of chemotherapy, Mom fasted even more and had even more methotrexate (but over 24 hours, not 4 hours) and everything was fine.

So, Mom almost died from her first round of chemotherapy. The methotrexate was too concentrated for her, and the methotrexate probably formed tiny crystals in her kidneys, damaging them. It would take a long time for those crystals to dissolve and for Mom's kidneys to heal. The fallout included:

1. Mom's extended stay in the hospital (12 days instead of 4).
2. They had to give Mom a special drug (glucarpidase) to treat the poisoning, and it cost tens of thousands of dollars.
3. Mom had to wait almost 6 weeks before she recovered enough to get her next chemo (her chemo should've been every 2 weeks).
4. For the next several chemos, we had to give less methotrexate than the doctor would have liked, because Mom was still recovering (and we weren't sure how much she could take). This meant less chemo attacking the cancer cells.

Not a great start to chemo.

To clarify, I'm not mad at the doctors for Mom's methotrexate poisoning. PCNSL has been treated with methotrexate at both 4 hours and 24 hours, so the doctors were following a standard. At the time, I didn't know anything about Mom's chemo and I didn't think about the time span, so we didn't object. And 4 hours is definitely less waiting for the patient. On the other hand, Mom is older than the average PCNSL patient. Also, she's had quite a few other medical issues, including Wegener's granulomatosis for over 20 years. 

Everyone makes mistakes. That's how we grow. We grow, learn and keep going.

Back to a question: How will increasing the time span of a drug affect its effectiveness? In particular, giving 4.8 g of methotrexate over 24 hours instead of 4 hours? If a drug needs to reach a certain concentration in the body, then a shorter duration may be better. Perhaps that's the case for drugs to cross the blood-brain barrier (BBB), but I'm not sure. On the other hand, giving a drug over a longer period of time can be more effective. Why? Why isn't the same amount of drug the same effectiveness?

My understanding is that methotrexate works at certain stages of the "cell cycle." Also, a tumor is a mass of cells (think of a ball), so the methotrexate can kill only the outer layer of cells per cell cycle. The longer the drug duration, then the more times the drug can kill the outer layer of cells, let those cells be shed, kill the next outer layer of cells, and so on. 

Regardless of the reasoning, here's some proof from a scientific article, "Methotrexate Cytotoxicity for L5178Y/Asn- Lymphoblasts: Relationship of Dose and Duration of Exposure to Tumor Cell Viability."

Feel free to spend time with the chart above. The horizontal axis is increasing amounts of methotrexate. The vertical axis (Viability) is how well the cells survived. As we're interested in killing cancer cells, lower values are better. The lines connect experiments done with the same drug duration (e.g., 3 h, 6 h, 18 h). 

In that chart, compare the red and blue circles. The red circle is cells in 100 µM methotrexate for 3 h; about 10% survived. The blue circle is 0.1 µM methotrexate for 42 h; less than 1% survived. Imagine that: one can give 1000x less drug but still get *much better* results than before simply by waiting 14x as long. 

Since we're looking at charts, I want to end this post by re-explaining a graph from last time. I'll try to be clearer.

First, this graph is showing something different from the chart way above, so cast that out of your mind. Here, the horizontal axis is how many days have passed. The vertical axis (% Survival) is how many mice survived in a given group. There are 3 groups: "Control," "Chemo-cocktail" and "Fasted/chemo-cocktail." All 3 groups had cancer. The Control group had no chemo. The Chemo-cocktail group had a cocktail of chemotherapies. The Fasted/chemo-cocktail group fasted before receiving the same chemo-cocktails as the previous group. The graph also has notations that fasting was done on Day 7 (for the group that fasted), and chemo was given to all groups around Day 9.

Each line on the graph follows one of the groups as it goes from 100% alive on Day 0 to x% alive after so many days. (That's why all three lines are always decreasing, never increasing.)

I've circled three points on the graph and will describe them below. If you can figure out which description fits each circled point, you'll have gained a good understanding of the graph.

1. After ~27 Days, the entire Control group was dead.
2. After ~45 Days, ~18% of the Chemo-cocktail group was still alive. Chemo was much better than doing nothing.
3. After ~52 Days, ~50% of the Fasted/chemo-cocktail group was still alive. This was much better than doing only chemo!

Whew! Mom's first chemo was a trial, but we made it through. Don't worry; I hope to summarize subsequent chemos more quickly. =)

Next timeline: 

1. March 17, 2014: First chemotherapy.
2. April 25: Second chemo.
3. May 27: Third chemo.
4. June 10: Fourth chemo.

Fighting Cancer, Part 3 of X: First Chemotherapy.

Timeline so far:

1. Christmas Day, 2013: Grandma Fong passes away.
2. February 19, 2014: Mary takes Mom to ER. Doctors find brain tumor. Hopeful diagnosis is benign meningioma.
3. February 22: Mom has brain surgery to remove tumor.
4. February 25: Doctors analyze tumor tissue and find not benign meningioma. Rather, tumor is malignant, Primary Central-Nervous-System Lymphoma (PCNSL).
5. Mom stays in hospital to recover from brain surgery. She has much physical therapy, etc.
6. March 8: Mom discharged from hospital.
7. March 17: Mom's first chemotherapy scheduled.

Do you like detective shows? Mom does. When I was a kid, we watched "Murder, She Wrote," "Crazy Like a Fox," "Perry Mason," "Columbo," etc. It's fun (and mental exercise) to figure out the mystery. Of course, TV is contrived. Treating cancer can be a real mystery.

I was going to describe Mom's first chemo session in one post. However, there are too many important details, so this will be a two-parter. In this first post, I'll explain everything we expected to happen ("Six strangers arrive at a dinner party…"), and I'll give you the outcome ("Mr. Boddy was found dead in the library!"). In the second post, I'll explain what happened in between. Can you figure it out before then?


Previously on "Fighting Cancer"….

Last post, I said my mom's medications may have led to her cancer. I found a specific reference in one of the doctor reports: "Patient by history apparently had received Cytoxan in the past for her Wegener's granulomatosis."

Cytoxan is a trade name for cyclophosphamide. More info on cyclophosphamide is here. If you search that article, you'll find it mentions both Wegener's and lymphoma.


Expectations.

Now that we knew Mom had PCNSL, Mom needed chemotherapy. That's because surgery is unlikely to completely remove PCNSL: microtumors may have formed in other parts of the brain or other parts of the body. If the doctors had known my mom has PCNSL, they would have skipped brain surgery and gone straight to chemo.

The main problem with brain tumors is the Blood-Brain Barrier (BBB).

What's the BBB? Well, your brain needs oxygen and other stuff, just like the rest of your cells. So there are blood vessels (capillaries) running throughout your brain to reach all the cells and give them nutrients, remove waste, etc. However, each of these capillaries is naturally lined with the BBB. The BBB is supposed to allow the proper things through (e.g., water, glucouse, oxygen) while blocking improper things. In particular, bacteria and viruses are blocked, so the brain doesn't get infected.

Here's a schematic of the BBB, from Wikipedia:

The BBB is basically the blue cells in the middle.

The BBB prevents bacterial infection, but what happens when bad things are already in the brain (e.g., tumors)? Most chemotherapy drugs can't pass the BBB. The solution is crude: more chemo. By giving much more chemo than normal, we hope enough chemo will get into the brain to kill the tumor cells.

Mom's chemo would have four main components: sodium bicarbonate, methotrexate, Rituxan and leucovorin. Methotrexate is a potent chemotherapy drug from the 1950s; it kills rapidly dividing cells, including cancer cells but also bone marrow and skin. Sodium bicarbonate (baking soda) is used to make one's blood more basic or alkaline, because methotrexate is more soluble that way. Leucovorin is basically the antidote to methotrexate; once leucovorin is used, methotrexate is neutralized. Rituxan is a fancier drug from the 1990s. As a simple comparison, a Rituxan molecule is about 300 times as big as a methotrexate molecule. Rituxan is generally safer than methotrexate, but Rituxan can have problems at the start of an infusion.

The plan was to inject sodium bicarbonate into Mom until her urine was pH > 7.9. Then, they'd inject methotrexate at a high dose over 4 hours. They'd wait 24 hours, then give the leucovorin. Finally, they'd inject Rituxan.

Mom's blood would be checked at least daily and she would be watched for adverse side effects. After a couple days, the methotrexate should be completely gone (via urine). Then she could go home.

To facilitate all the injections and blood draws, they wanted to install a PICC line (pronounced "pick"). PICC = Peripherally Inserted Central Catheter. A PICC line is a tube that goes from a vein in your arm all the way to your heart:

The PICC is basically a long-term IV. Once a PICC has been installed, a nurse can draw blood or inject drugs without having to poke the patient anymore. Precautions must be taken to make sure the PICC stays in place and does not get infected.

On top of all this, I wanted Mom to fast for 72 hours.

Fasting is used by many people for many reasons. Mine was specific: in February 2012, I ran across a scientific article entitled, "Fasting Cycles Retard Growth of Tumors and Sensitize a Range of Cancer Cell Types to Chemotherapy." I would almost summarize the paper as showing, "Fasting Cures Cancer!" (I'm not saying that, at least legally.) The paper had two graphs I found particularly compelling:

Both graphs describe mice with a cancer called neuroblastoma. In the first graph, some mice were given the chemotherapy drug doxorubicin (DXR), and some also fasted. In the second graph, some mice were given a "chemo-cocktail" of DXR and the drug cisplatin, and some also fasted.

How do you read these graphs? Let's take the second one (also below). Focus on the "Control" part, which is the black line marked with circles. These are mice with cancer and no chemotherapy, no fasting. There's a circle at 0 Days/100% Survival, then circles at 22 Days/65% Survival, 23 Days/50% Survival and 26 Days/0% Survival. That means all the mice were alive at Day 0, then some died on Day 22 (65% left), more died on Day 23 (50% left), and the rest died on Day 26 (0% left). All mice lived less than 26 days.

Now focus on the "Chemo-cocktail" part, the blue line marked with triangles. Mice died on Days 10, 11, 40, 60 and 70. In particular, you can see that some mice died early (Days 10 and 11), but the rest lived longer than the controls (40–70 days). The chemo hurt some mice but helped others. All mice lived less than 70 days.

Finally, look at the red line (upside-down triangles). That's mice that were given chemo and which also fasted. The first mouse doesn't die until Day 30, which is better than every single mouse in the control. Just as important, ~25% of the mice lived past Day 75, which is better than every single mouse who received chemo only. In fact, those 25% were still alive past Day 300, at which point they presumably stopped the experiment because those mice might live for years.

Now, imagine those mice were like people and given a choice. They're already going to get chemo, which is a big step. Should they choose also to fast? ("Isn't chemo a big enough change already?" "Fasting for 72 hours sounds dangerous, especially when getting chemo.") That choice could be the difference between two very different futures: in one, you're at someone's grave because they lived a bit longer but still died from cancer; in the other, that person became cancer free and is still with you. Compare the blue line to the red line.

One could add several caveats to what I just said. But the bottom line is that I remembered that article from February 2012 and kept a copy on my computer. If I ever got cancer, I'd seriously consider fasting.

By the way, here's a video by the article's author, Dr. Valter Longo, summarizing their results:


When they found Mom's cancer, I thought about those graphs and the consequences of not speaking up. I pushed for Mom to fast, for 72 hours. (In the article, the mice had only water, for 48 hours before chemo and 24 hours after.)

Mom agreed. Our main oncologist, Dr. Quadro, didn't veto it.

The final kicker is that I didn't plan to be around while all this was happening.

Ever have an annual tradition? Maybe a trip to Hawaii, or Thanksgiving at Grandma's. What about a tradition that can truly happen only once a year? Maybe Black Friday Shopping. Or a Monarch butterfly migration. For me, that's the Game Developers Conference (GDC).

I attended my first GDC in 1998, when just a junior at Cal. I've been back almost every year since, and many friends I see only at that conference. Part of me still really wanted to go this year, and I had already committed to volunteering there for the entire week.

Thankfully, Mary said she would help Mom during this time. Mary would even stay in the hospital overnight with Mom. And my uncle Ron and auntie Muriel would also come to town to help out.

So, these were our expectations and timeline:

1. Mom starts water-only fast, 48 hours before chemo.
2. Geoff goes to Game Developers Conference (GDC) for 1 week.
3. March 17: Mom starts first chemotherapy.
4. Mary stays with Mom in hospital.
5. Muriel and Ron come to town.
6. Hospital staff puts PICC line into Mom.
7. Nurses inject/infuse sodium bicarbonate continuously until Mom's urine is pH > 7.9.
8. Nurses infuse methotrexate at a high dose (3 g/m^2, or 4.8 g in Mom's case) over 4 hours.
9. Nurses wait 24 hours, then infuse leucovorin.
10. Nurses infuse Rituxan.
11. Mom keeps fasting until 24 hours after chemo.
12. Everyone waits a couple days until chemo out of Mom's body. 
13. March ~20: Mom goes home.
14. March 22: Geoff returns from GDC.

Reality

Here's how things ended up:

1. Mom starts organic-chicken-ginger-broth fast, 48 hours before chemo.
2. Geoff goes to Game Developers Conference (GDC) for 1 week.
3. March 17: Mom starts first chemotherapy.
4. ???
5. March 28: Mom discharged from hospital.

The medical report is 686 pages. The discharge diagnosis says:

1. Diffuse B-cell lymphoma with central nervous system involvement status post chemotherapy.
2. Acute renal insufficiency secondary to methotrexate toxicity.
3. Wegener's granulomatosis followed by Dr. Barger.
4. Hypertension, started on metoprolol.
5. Hyperglycemia likely secondary to steroid.
6. Hypocalcemia.

That doesn't include Mom's eye problems (retinal lesions).

Can you figure out what happened during Mom's first chemotherapy?

(Possible hint: at some point, Mom was scheduled to also receive rasburicase and glucarpidase.)

More importantly, can you guess *why* things happened? And what should change for the next chemotherapy? What would you do if you or your loved one was about to get chemo?

Stay tuned for Part 4: "Mystery Solved?!"

Fighting Cancer, part 2 of X: More on surgery

Recently, Mom asked me more about how her surgery had gone. Of course, she wasn't awake during the actual surgery. But also, because of possible brain injury, she has trouble remembering things. Shucks, even I have trouble remembering things. So, I'll go back a bit.

Mom has an autoimmune disease called Wegener's Granulomatosis (WG). Nowadays, it's been renamed to ANCA-Associated Vasculitis. Honestly, you can google for any info I could provide you. I will say that Wegener's is an autoimmune disease, not to be confused with something like AIDS: Acquired ImmunoDeficiency Syndrome. I know they sound similar, but they're almost opposites: In an autoimmune disease like Wegener's, your immune system is almost on auto-pilot and attacks everything in sight, including your own cells. Your immune system is doing *too much.* In an immunodeficient disease like AIDS, your immune system is weak/destroyed. Your immune system is doing *too little.*

Besides Wegener's, another example of an autoimmune disease is systemic lupus erythematosus, AKA lupus.

So, Mom's had Wegener's for many years. And in recent years (2012, 2013), her vision started to deteriorate. That can come with Wegener's, but Mom's Wegener's was apparently stable. So they did an MRI of Mom's head:

That was on 9.28.2012. The left side of the brain is on the right, and vice versa. You can tell by the "R" and "L" notations on the image.

On the left side of the brain, do you see that tumor? I don't, either. Nor did the doctors. If it was there, it wasn't apparent.

Mom's eyesight continued to deteriorate in 2013, and no one had a good explanation nor solution. She even traveled to specialists in Portland and Minnesota. (The latter being the famous Mayo Clinic, which my mom did enjoy.)

All this was also happening while Mom was taking care of Grandma. We all miss Grandma Fong.

Grandma died on Christmas Day, 2013. On February 19, 2014, a Wednesday, my sister took Mom to the ER. They did a CT that evening and another MRI the next evening. They saw this:

It's ~500 days from the earlier MRI. Or 1 year, 5 months.

I've put the earlier MRI below to compare more easily.

I lined up the slices as well as I could.

Of course, now that I look at the slices lined up, I wonder if I do see something? But I know nothing about brain images, so I'll just quote the report summary from 9.28.2012.

IMPRESSION:
1. No evidence of intraorbital or intracranial involvement with
Wegener's granulomatosis.
2. Extensive white matter nodular changes within the corona
radiata and centrum semiovale, nonspecific, but presumably
related to aging. 

The MRI from 2.20.2014 reports the tumor as "5.9 cm x 4.2 cm x 5.3 cm." They also said it was most likely a meningioma. (That would have been a better diagnosis.) 

Anyway, Mom wanted to know about the surgery. My notes say the surgery happened on February 22, a Saturday, starting at 8 AM, lasting several hours. The doctors removed (resected) as much of the tumor as they could, and they also tested the tumor tissue to know exactly what kind of cancer it was. The diagnosis would come back as Primary Central-Nervous-System Lymphoma (PCNSL). Also, they did another CT on February 23 to see how things looked after surgery:

Of course, now Mom had to heal from her surgery. She had some major stitches. I feel like Mom went through every department in the hospital, as she was in op, post-op, acute rehab, rehab, and probably oncology and who knows what else. 

Mom was discharged on March 8, 2014, a Saturday. From the day my sister took Mom to the ER, that's 18 days. If anything, I'd say that Mom's good at rolling with the punches. (Grandma was, too.)

Mom still had a lot of rehabilitation and recovery to do. And, as the tumor was not a meningioma but instead this metastatic lymphoma, Mom needed more treatment. Next up: chemotherapy on March 17, 2014. That was also the start of the Game Developers Conference (GDC), my favorite conference of the year. Should I still go? Would I still go?

One more thing before ending this post. Remember how I said Wegener's is an autoimmune disease, and pretty much the opposite of AIDS, an immunodeficient disease? Well, if you google primary CNS lymphoma, you'll find that PCNSL usually occurs in immunodeficient people. That's right, immunodeficient (aka immunocompromised). So why did Mom get PCNSL, when she should have an overactive immune system? My understanding is that Mom's immune system has been essentially compromised/deficient/suppressed, because she's been on medications, for several years, that suppress her immune system. So, yeah, the drugs my mom was given probably led to her cancer. That said, Mom almost died from Wegener's over 20 years ago. 

We'll just keep rolling with the punches and doing our best.

Fighting Cancer, part 1 of X: Surgery

In February 2014, my mom was diagnosed with a brain tumor:

That blob is a 6 x 4 x 5 cm malignant tumor. Here's a top-down view:

Judging from the images above and other data, the doctors first thought Mom's tumor was benign. They thought it was a "large meningioma"; big but relatively easy to remove.

On February 22, 2014, Mom had brain surgery. The doctors removed as much of the tumor as they could. Below is a picture from the day after surgery.

You can see a bit of the space where the tumor was, and also where they cut into Mom's skull to get to the tumor.

Now that the doctors had cut out the tumor, they could examine it under the microscope to get a better diagnosis. Unfortunately, the doctors discovered that the tumor was not a meningioma, but rather "primary CNS lymphoma." What's that?

• "Primary," as opposed to secondary, means that's where the cancer started. I think that's good; if it were secondary, you'd have to search for the primary tumor, and you'd need to handle two tumors. (No secondary tumors have been discovered in Mom, yet.)
• "CNS" is "central nervous system." That's the spinal cord or brain.
• "Lymphoma" is a cancer of one's white blood cells. White blood cells are part of our immune system and are found throughout our body.

To summarize, some of Mom's white blood cells turned cancerous, and they formed a tumor in her brain. This tumor was malignant, which is bad on a couple levels: 1) It probably grows relatively quickly, and 2) it can spread to other parts of the body. Because of this, the doctors decided we had to do more than just surgery to get rid of Mom's cancer.

Next time: "Fighting Cancer: Chemotherapy. And Fasting."

P.S. Some statistics on primary CNS lymphoma: It's rare: 4 cases per 1,000,000 people. Survival rate: I've seen different quotes. From 10–18 months to > 4 years, for example.

Transitions

Grandma passed away on Christmas Day, 2013. Legend has it that she made a transition: from this life to the next. Actually, we seemed on the verge of many transitions then, and yet very few.

Christmas of course represents the transition of Jesus Christ from heaven to earth. And we all celebrate New Year's, transitioning from one year to another. Resolutions, anyone?

Earlier in 2013, I had moved back home for non-Grandma reasons. But taking care of Grandma made it an easy decision to stick around. We still had to handle Grandma's burial and belongings, but this seemed like a good time to think about my own transitions. Get a job? Doing what, and where? Relationships? Faith? There seemed plenty of possibilities, and I tried to discern what I *should* do.

In January 2014, we buried Grandma in Seattle. Then we had a memorial in Sacramento. Then we had another memorial, back in Seattle! It was a lot of work by countless people, but I'm glad we did all that. I'm glad we gave Grandma's friends and family a chance to honor her, and I'm grateful for that chance, too. I was tasked with making a slideshow for Grandma's Sacramento memorial. I've always been aware of how I didn't help much when my dad passed away, and I wanted to try harder this time. I had learned from my dad's passing, 20 years ago, that it really is important to honor the person at that time. People do move on; we don't hold someone's memorial every year.

Anyway, here's Grandma's slideshow:

It definitely took a lot of work, but that part's kind of a blur now, and I'm grateful for how it turned out. I think my dad would've appreciated it, too.

At the start of February, I was home again, as were Mom and my sister. I'm sure we were all thinking about transitions. Mom's life had revolved around Grandma care for a couple years; now what? Did one of us need to stay with Mom? Would she move? Did my sister or I want to leave Sacramento?

I decided to work harder at my computer programming and see where that led. But Mom still had her own health problems. Twenty years ago, she almost died from a chronic autoimmune disease called Wegener's Granulomatosis. More recently, she had suffered drastic vision loss in her right eye over the course of one year, and numerous experts were unable to pinpoint the cause or an effective treatment. (Mom flew to Portland, New York, and even the Mayo Clinic in Minnesota for advice.)

Then came Valentine's Day in Fresno. You see, before Grandma died, we had taken her to see Jake Shimabukuro in concert. She loved it! She was so excited after that concert that she had trouble sleeping that night. And after that day, Grandma'd love to hear music from Jake on our computers.

Jake was playing again in Fresno the day after Valentine's Day, so Mom, my sister and I made a road trip to see him.

However, on Valentine's Day itself, my mom first had (another) eye appointment. Strangely, my mom had trouble simply writing out a check to the doctor. It was strange enough that the receptionist suggested setting up an appointment with Mom's regular doctor, so we walked over and made one for next week.

We all had a good time in Fresno, but I remember my mom struggling a bit. She had memory/communication problems.

The next week, my sister took Mom to the doctor's appointment. Nothing new came from that. But the next day, Mom had an unrelated appointment with another doctor, and I think my mom's behavior was so strange that my sister took her to the ER.

The doctors at the hospital, Mercy General, did a CT and an MRI on my mom:

That, my dear, dear friends, is a tumor. It's dimensions are about 6 x 4 x 5 cm, or 2.5 x 1.5 x 2 inches. It's *not* benign. The diagnosis was "primary CNS lymphoma."

Remember how I mentioned transitions? Grandma's passing introduced a landscape of infinite possible transitions, for all of us. Yet now there would be none, or perhaps just one.

On the other hand, beforehand I didn't know how to decide what to do. Now, the decisions were easy.

Next time, perhaps: "Fighting Cancer."

Grandma: the end

I went for a quick jog this morning. I don't mean "quick" like, "I ran only 5 miles, when I normally do 10 every morning." I can't stand false modesty. I jogged/walked around *half* the park near our house, *once*, basically like walking around the block. For me, that's good exercise, and I'm not ashamed of it. =)

Anyway, in that short walk I saw something remarkable. I was looking one way, then another, then back, and suddenly I saw an older woman in the distance, seated on a walker. She looked almost like my grandma, even the way she was seated, in the sunlight, looking out across the park. But I knew it wasn't her.

I think that's one of the toughest things. When you *know* it can't be them. It's like when I have a dream about my dad. Every year or so, I'll have a dream in which it was all a mistake; he was just trapped in some far off part of the world, and now he's back. And then I wake up, and I *know* it not only wasn't real, it will never be real. (At least in this life.)

Last year, in August, we rediscovered the Sacramento Zoo. It's always been there, but I just didn't have a reason to go. But Grandma liked it.

Here she is with her pet giraffe. There's also an elephant, which Mary brought from Africa.

Grandma got to feel what this lizard is like. (I think it was a lizard.) Grandma was always up for trying and learning new things.

I think here, Grandma's looking up some bamboo plants in the zoo. In the background is Mary.



We went to the zoo a few more times. Actually, Grandma had quite a few more adventures last year. Maybe if we ever meet in person again, you can ask me and I'll tell you about them.

Here's a picture from more of a mini-adventure. Grandma loved the sun, so we took her out to my car, opened the hatchback, and we fed her dinner while sitting on my Scion's "tailgate."

Isn't it a nice picture of her? The superficial part of me thinks, "Too bad she's not smiling." But I've come to realize that Grandma stopped smiling on the outside because her facial muscles had simply grown weak. It's like when we lose a tooth, or even if our teeth just get yellower. It's just part of getting older.

Here's another close-up of Grandma. It's from November, shortly after her birthday. There was some discussion whether Grandma was 94 or 95, as she was born in China and we never had her birth certificate. I say Grandma earned the right to be called 95. =)

Strangely, this seems to be the last photo I took of Grandma. We sent her to a nursing home for a week, to give us a break from hospice care. That was mid-November. Grandma came home later and I think we still had a couple more adventures.

It's a shame, because there was a lot about my grandma that I didn't pay attention to learning. I learned it later, and I'm glad I did. But I wish we could've talked about it a year ago. (Grandma lost the ability to talk toward the end.)

Grandma Fong passed away in 2013, on Christmas Day. She was in bed, at home, with us in the room. I had just finished putting on a sweater she had bought for me.



Actually, Grandma had a pretty good life. I know many people are afraid of dying painfully, being alone, running out of money, etc. Grandma was never rich, and I think us family members would sometimes do things for her more out of moral obligation than tender love. (I sometimes did, at least.) But I think things worked out in the end.

Grandma would want me to mention a little more. In the Bible, which is specially from God, there are promises. I don't quite understand them, but either a person dies and immediately goes to be with Jesus, or a person dies and sometime later goes to be with Jesus. Perhaps it's always immediate from their perspective. I don't know if it happens to everyone or most everyone, and I don't like how that conversation gets off track….

Nevertheless, I really do believe that, if anyone were to be with Jesus right now, it'd be my grandma. Or perhaps she's still resting, and she'll see him before she knows it.

Remember that quick jog I took this morning? When I saw the older woman sitting in the walker, I knew it wasn't Grandma. And it wasn't, as I jogged by her a moment later.

But, for a split second, I felt like Grandma really was there. She was. And she was very happy. I'll take that.

One last thing for this post: We had to go through Grandma's belongings. So, I took her wallet and took everything out. That's this photo: every single thing Grandma had in her wallet. Some will recognize the items or pictures.

And if you look, you'll see some money. I honestly forgot what I did with it, so let's pretend I took that exact amount and put it in the offering, fulfilling the prophecy.

The end

June/July: Teaching at iD Tech; Mr. Riley from high school!

Last summer, I had my first paid job in several years! I was an instructor at iD Tech, a summer camp. You can learn more about iD Tech here. In a nutshell, I would spend 7 weeks at a local college teaching kids and teens, 8–18, about computer programming and game design.

This is "c-jump," a board game about skiing … and computer programming. Only at a tech camp. =) The game is supposed to teach programming and logic, and I thought it was worth a try. But the kids didn't play it much because there were always more exciting options. (This was not just programming class but also summer camp, after all!)

During break times, there was always a physical-activity option, like the kickball game in the background, and a non-physical option, like playing cards while staying in the shade….


Here, I'm moderating a game called "Dictator!" This game was amazing.

Dictator! plays like Mafia/Werewolf/Witch Hunt, with a twist: Rather than vote someone out, the group elects a Dictator, who can then kick someone out. It's a small but profound change. All the kids liked it, young or older. Best of all, Dictator was created by a fellow instructor, Sandman! (Each instructor had a camp nickname.)

While I taught for 7 weeks, each week was a different group of campers. One of the highlights at the end of each week was this. Can you guess what's happening?








It's a pieing! Each week, one lucky camper gets to choose one unlucky instructor. That camper gets to pie the instructor!

Yes, one week even I got pied!






One of my classes. A core feature of iD Tech is no more than 8 students per instructor. This was funny hat/hair day.





Another class. The whiteboard says "Fusion" and "Homulan." That week's class was Multimedia Fusion 2 Developer, and Homulan was my camp name. (It's a play off of Star Trek's "Romulan.") What's neat is that we strived for each camper to create her or his own project/game, in only 5 days! And some campers were only 7 or 8 years old! (Of course, we taught different software to different age groups.)

A third class. Some kids are so good at making funny faces. =) Good times.






My smallest class, with only 4 students. (One had to leave early.)

This was our "tough camper" photo. Don't mess with us! =)

You know, it was tough saying goodbye each week to all the wonderful campers. Fortunately, it seemed like each week another group of wonderful kids and teens would arrive. Still, it could easily be physically or emotionally draining.

This was my first time really teaching. (I had tutored before.) And many weeks I had to learn completely new software/curriculum. By the end of the summer, I had learned and evolved a lot.

I think this was a whiteboard on Friday of my 2nd-to-last week: 3-D Game Design: Role-Playing Games. Each camper learned the Neverwinter Nights 2 engine and used it to make her own RPG module. That was my 2nd time teaching the course, so I actually had a plan. =)

From iD Tech

This is the whiteboard of my last week: Adventures in Game Design. Most of the whiteboard is filled with a giant table, with one column for each of my campers. I made the table because I wanted to track each camper's progress, and I wanted each camper to know her own progress. All things considered, it worked well!

How was my summer-camp teaching experience? Overall, I definitely owe iD Tech a huge "Thank you!!!" I learned a ton, had a lot of fun and I met a lot of people/kids/teens. The pay is good––for a college kid (many instructors are still in college or just graduated).

Though I had never taught a class before, I've always been interested in "education." And some have suggested I'd make a good teacher, perhaps in high school or college. While I feel more drawn to educating via making apps, I'm glad I got to try teaching. And I definitely learned a few things.

It a bit of a sad twist, later last year I took an online course on "How to Learn/Teach Math," and that was even more eye-opening. I really wish I had taken the course before iD Tech, as it would've made me an even better teacher. Oh well, I can still apply the lessons to my apps! (Tip: A "growth" mindset is much better than a "fixed" mindset.)

From Mr. Riley

Finally, I had an improbable occurrence while teaching. iD Tech camps are always at colleges and universities, which is cool because the campers get a little taste of dorm/college life. While eating in the college cafeteria, I saw a familiar-looking older gentleman at another table. I went over and, sure enough, it was Mr. Riley!!

Mr. Riley was a science teacher at my high school. He also ran the "Chess and Games Club," which was my home at school. Whatever day was "Chess and Games" day was the best day of the week.

What was Mr. Riley doing in a college cafeteria almost 20 years later? He was taking a teacher-training course because he was going to teach one last time at another school, for his granddaughter. Isn't that sweet?

I spent many hours each week, for four years, in the "Chess and Games" club with Mr. Riley. But only at that brief meal in the cafeteria did I really get to talk to him as one adult to another.

It's improbable events like that that help me know I was where I was supposed to be. On the other hand, maybe I wasn't supposed to be there, and God was just being gracious. Hmm…. Either way, I'll take it. =)