Pre-diagnosis

Routine blood work

When my husband retired, I said, “Let’s go get a blood test,” because he doesn’t like to know about those numbers. His numbers came back all normal and mine was pretty much all normal except for the platelet, which was in the 50s. I didn’t understand it. I know it’s lower than the lower limit.

A couple of days later, my primary care physician from Kaiser emailed me, and said, “I want you to get a spleen ultrasound.” I wondered why. I did the ultrasound and my spleen is 18 cm. Then that’s when I started Googling and found out that 18 cm is 50% larger than normal so there must be something wrong with me.

I Googled it right away. What’s the purpose of a spleen ultrasound and what happens if it’s a certain size? I have a general idea why before I went in and when I got the result, it just confirmed my suspicion that it had something to do with a blood disorder.

A couple of days more, my doctor said, “You have teardrop-shaped red blood cells. Now you need to get a bone marrow biopsy.” I searched YouTube videos and saw the big needle with the big handle drilling in. I asked, “Do I really need to? Is there another option?” She said, “That’s pretty much the gold standard.” I thought, Gold standard for what?

I was nervous about the procedure itself, but it wasn’t as bad as I thought. They did have a little trouble getting the marrow out. Later, I found out it was actually a symptom because I’m kind of dry.

Were there any other symptoms?

Around late April, I had quite an episode of vertigo. Never happened to me before. I was driving home, probably 10 minutes away, when all of a sudden, I felt blood traveling from my left ear to the brain. It’s almost like I can hear it. Then my vision became blurry. I thought it was my contact lenses getting dry. I kept driving for a couple of blocks and the road just started moving. That’s when I got a little scared. I parked on the side of the street and closed my eyes. I couldn’t open my eyes. I called my husband to pick me up.

We went to the ER. They couldn’t find anything. I had a similar mini-episode about ten times for the next 2 or 3 weeks. I know when it’s coming. The noise comes then my head spins. If I keep my eyes closed, I’m okay. 

I later read that it may have something to do with low platelets but I don’t hear too many people mention that. I didn’t make the connection until later on.

I still run and do weights. I work during Eastern time so I get off at 4 o’clock. I get really sleepy. I don’t usually take a nap in the afternoon but I would nap on the sofa for an hour and have him wake me up so I don’t sleep through dinner. That’s in the last month or two before the diagnosis.

Getting the official diagnosis

I got the call with the diagnosis on July 8th. I remember when we had the call. Now, I think back, Would it have been better if it was in person or through video?

As soon as we got on the call, I could sense he was nervous. He wanted to be careful how to break the news to me. I told him, “I’ve already done my homework. I think this is what I have and if that’s the case, go ahead and tell me. I’d much rather know about it and get it over with.”

He explained the scoring system, my platelets, spleen size, and fibrosis. Mutation-wise, I’m okay.

As soon as we got off the call, I was Googling MIPSS70. Now it makes sense, but at the time, I didn’t know about it. All I know is I’m probably MF-3 but what that meant, I didn’t know.

Joining online support groups

Some are much more experienced. Some can read my bone marrow biopsy and tell me whether it’s good or bad because I couldn’t understand some of the terminologies. But a lot of time, people give you support and prayers, which are helpful, too.

Feeling healthy but knowing something was wrong

It was very hard. I was hoping to get a second opinion outside of Kaiser, but because it’s HMO, it’s different.

I was able to get a second opinion from a different hematologist within the Kaiser network. He took his time, looked through my numbers, and concurred with the diagnosis. I also reached out to four hospitals outside of Kaiser, some major cancer centers.

In our Facebook group, we always talked about MPN specialists. In my experience, it’s actually not that easy to get ahold of one.

My Kaiser hematologist isn’t an MPN specialist but his diagnosis was accurate. He said, “We handle one myelofibrosis patient each month,” but I didn’t know how to interpret that. Looking back, it’s probably a pretty significant number because Stanford handles about 25 myelofibrosis transplants a year.

Out of the four major hospitals, one of them got back to me. I can talk to a hematologist but not an MPN specialist and it will total about $5,000 out of pocket.

Side effects of stem cell transplant

Overall, the experience was a lot smoother than I imagined.

I thought I would have a reaction to the chemo right away, but it wasn’t until 5 or 10 days after that my body started to feel them.

One way to describe the initial feeling of chemo was kind of like towards the end of pregnancy when your body is getting heavier and heavier. It’s harder to do basic stuff. Going to the bathroom takes a lot of energy. Taking a shower requires two people.

Then comes the nausea and diarrhea, but they can be controlled. What I found out later was ondansetron works for me. It doesn’t work for all patients. One of the nurses said I could have it every eight hours so I never feel the nausea and I’m ahead of the game. As soon as that happened, I was able to eat a lot more than before.

Recovering from stem cell transplant

For the first three months, I was supposed to be hiding away upstairs. I didn’t completely follow that because I felt okay. I was weak. When I went upstairs, I felt my legs were heavy. I thought maybe I could use going up and down the stairs as an exercise to gain strength.

I was hungry all the time so at midnight, I would be eating mini saltine crackers. My husband said I sounded like a little mouse in the bedroom. At four o’clock, I’ll be hungry and crave traditional Chinese food. I would be cooking rice soup and steamed pao at 4 o’clock. He doesn’t know how to cook those.

For four or five meals a day for about a month or two, I ate whatever I wanted to eat and did not gain weight. That was probably the only time in my adult life I would not gain weight eating like that.

For the first three months, I went back to Stanford ITA once every three days to check my blood. I needed a transfusion a couple of times. After that, I was fine and they just checked if I needed any adjustment on my medication.

They want to make sure because, during those first three months, you could have acute GvHD. Your blood count can fluctuate quite a bit.

Supporting patients with different backgrounds

China has a very different dynamic. Patient-doctor relationships are a little different. A lot of times, patients are afraid to ask the doctor questions so they actually help each other.

The patient actually knows more about the disease than a lot of the patients here. Give them a bone marrow biopsy report and one person can look at the different numbers and decipher it for you.

The treatment options are slightly different. The philosophies are different there, too. China seems to believe in MAC approach versus the reduced intensity (RIC) approach. They want to clear all your marrows, make sure there are no bad cells in there, and then bring in the stem cell. But here, studies show that the reduced intensity produced just as good as a result.

As a result, when patients go through MAC, there is a lot of damage to their organs. They are in the hospital for two weeks of chemo and they have much stricter diet restrictions. I felt that slowed down the recovery.

There was actually one patient I met who was going through a myelofibrosis stem cell transplant. It’s very hard to find a full match for Asians. He couldn’t find any good match. I got lucky because my brother is a full match.

What do you like doing together?

There’s a 17-year age difference between us. There’s a cultural difference so there’s not a whole lot that we have together in common.

She likes to dance; I like to sit by the wayside. She likes to eat Chinese food; I like to eat Mexican food. Our life has been a series of compromises more than anything else.

We like to do a little bit of cooking together. We like to help out with non-profit organizations. We went to Mexico once to build a house with our school church group, but age prohibited me from doing it again. Cathy and her son Tom made a second trip down there in 2022 to help build a house.

It’s a very satisfying experience and I would encourage other people to go and do it. It allows them to see how people who are not so fortunate live. They don’t have running water, they don’t have electricity, they don’t have flush toilets, or anything else.

Impact of a life-threatening disease

I couldn’t fathom it. I couldn’t fathom losing my wife. She’s a lot younger than I am and it was just racing through my head that this isn’t fair. I should be the one that should go first. I was just so afraid that I’d lose her. That was the hardest thing for me to process.

Once I got over that, I realized that we weren’t throwing in the towel. Not now, not when we still have options. She’s a strong lady. She was going to deal with it.

Because we’re a team, we’re going to see this thing through together. I’m going to be there every step of the way. I’m going to give her encouragement and we’re going to fight this together.

I had a pretty good feeling that we were going to beat this. I say we because it is her and me. As a caregiver, maybe you’re not doing the actual fighting, but you’re doing all of the support.

What was the biggest surprise, lesson, or difficulty for you?

The hardest thing for me was to show strength. I knew I had the strength, but emotions got in the way. The emotions and the fear of losing somebody that you actually love.

I needed to be strong. I needed not to show my worry and my concerns that things might not go the way that they need to go.

I wanted to show her a positive attitude. I wanted to put on a good face for her and show her that I’m positive that things are going to get better and that eventually, we’ll get back to as near normal a life as we possibly can.

Not taking care of one’s self

I felt that I wasn’t taking care of myself. You hear this all the time. You have to take care of yourself before you can take care of somebody else and I forgot that. I was running around to the point where I was running myself ragged.

Cathy saw that and she said, “You need to stop coming in so early in the morning. Instead of coming in at 8:00 or 8:30, come in around 10:00 or 11:00, and give yourself a little bit of time.” I did and it got better.

You do have to take care of yourself. If the caregiver falls ill, then the caregiver can’t take care of the patient.

Advantages of patient education

They say knowledge is power. But at the same time, you have to be careful when you start looking up information on the Internet. Take it maybe with a grain of salt.

If this website pops up and says you should be doing X, Y, and Z, you have to look at the website and ask yourself, “Is this a reputable website?” If you go to another website like Stanford Hospital or the Mayo Clinic, you put a little bit more weight into what they say.

I also think that once you get on these Facebook groups, they’re good and they’re bad. They’re good because they give you support. They tell you what other people have gone through.

At the same time, you have to realize that the majority of these people are on there because they have a special issue with something. When they say, “Oh my god, this is hurting me, this is doing this to me. I had this as a symptom,” maybe the majority of people don’t have those symptoms. Be aware that they can happen to you, but take it with a grain of salt.

In a hospital, you don’t need to worry about medication. The nurses are constantly monitoring that. But when you get home, again, it’s the caregiver’s responsibility to do virtually everything, and that includes monitoring the medicine.

A patient frequently has brain fog. They don’t know what they did. They don’t know what they should be doing. It’s up to the caregiver.

Get a two-week supply of pill bottles, each marked from Sunday all the way through Saturday. Load them all up with the morning, afternoon, and evening pills. Put them all in separate containers. That way, it’s one less thing for the caregiver to worry about.

By the time you go through the first week, you still have a one-week supply and you should be refilling the empty containers. If you can’t refill the empty containers, you know immediately that you need to order medication. Ordering medication immediately rather than waiting until they run out helped us quite a bit.