I recently went to Golden Gate Park in San Francisco for a day trip. First we went to the Japanese tea garden, which is a place that I was excited to go. I really love Japanese maple trees, of which it turns out they didn’t have many, but the grounds and the buildings were really cool.
We had a bit of extra time afterward, and I wanted to walk over to the Conservatory of Flowers, to see if they had anything blooming outside. As we were walking up, I could see in the distance a bright field of color, so we beelined right for it. When we got there, it was an amazing field of dahlias. So many colors and shapes. I had no idea there were so many varieties of dahlias. So if you can’t make it there in person, here are some photos to see it virtually.
I haven’t been inspired to write much as of late, as you can tell by my lack of posts. I was just more interested in doing other things.
Not much is new. Still doing maintenance carfilzomib chemo every two weeks. I still get high fevers from it every time. I’m into the 103 degrees now, so it’s been a challenge. I’m signed up for the flu every two weeks. Blah.
I went out to San Francisco a few weeks ago to visit my brother. We went for a hike at Land’s End, which I had never been to before. It was a cloudy day, but it was still scenic. It was pretty crowded, since a lot of people were off from work because of the holidays.
We hiked down to the ocean, and I found a big rock to climb up onto that part of it was in the water. I sat down to watch the ocean. California was having a storm coming in, which made the waves quite large. It was very satisfying watching the waves come in, break cleanly, and then smash into the rocks.
I’m always amazed by the power of the ocean. I’m also equally amazed, how rows of rocks in the ocean can dissipate that power. Waves that seem to be coming to run you over and churn you into dust, just dissipate into nothing. It’s fun to watch.
My view from the rock
I had a bone marrow biopsy the other day. I agreed to it 6 months ago. The myeloma specialist wanted to check on things, more specifically, he wanted to check my MRD status. Last time, I had 3 myeloma cells in 2.6 million.
Coming up to the biopsy, I was wondering why I choose to have it done. If it’s MRD zero (zero cells in a million), which would be awesome or if it showed 100 myeloma cells in a million, I’m not sure what would change much currently.
I suppose I would get a mental boost if it was zero, but what if it was worse? Would I feel dragged down? What am I going to gain from this? I feel pretty level-headed about it all, no matter what the result is, but those were my thoughts leading up to it. Anyhow, I just decided to go ahead and do it, because the specialist thought it was important. He probably knows more about myeloma than I do 😜. Maybe he will share with me his thoughts sometime. My regular oncologist was against it (mostly because of the cost for the hospital), but I twisted his arm (go figure, twisting an arm to have my marrow sucked out).
They take the bone and the marrow out of the iliac crest. I had them take it from my left side, because that’s where I had it done last time, and MRD can vary from location to location.
So I hopped up on the procedure table, face down. The nurse then came up and pulled down my pants to expose my butt. Then she tucked in some disposable cloths to my pants to contain the blood.
I’m lying there with my buns just hanging out. Minute after minute pass, and the nurse finally says, I’m going to find out where the guy is who is going to do the procedure. She flies the door open to the busy hallway and disappears.
“Don’t mind me, I’m just airing out my buns”.
She comes back after a few minutes and says he is at the hospital next door and will be here shortly.
Five minutes later, he comes in and says hello, and says he brought a friend to come and watch (he really said, can I have my student in here to observe?).
In my head I say, “sure, I’m lying here exposed, let’s get a bunch of people in here”.
Now, it’s a good thing I don’t actually care. I gave up caring about people seeing my butt awhile ago.
They numb me up as much as possible and start getting to work with the core needle, a needle so strong and sharp it cuts bone. Eventually they get through the bone and have access to my marrow.
There is no numbing of the marrow, so it’s the most painful part of the procedure. The nurse came over and gave me a back rub while they pulled it out this time. Which didn’t make any difference, but it was a nice gesture.
Afterwards, I was chuckling to myself. I was laying on a small table with my butt exhibited, with three people surrounding me, like I was on a stage doing a performance. The things people do for entertainment these days….
Anyhow, that’s my (hopefully entertaining) story, we will see what the marrow numbers are in a few weeks.
Hello, I finally feel like writing again. I’m at +23 on my stem cell transplant today. It has been an interesting past month to say the least. I’m still in recovery mode, and I’m told I will be this way for a few months at least.
The doctor told me that I did better than most. The end result is all that matters though, how much cancer is left or not left. I would rather be more miserable for longer and have a better response. I won’t know that answer for a few more months. I’m praying for MRD negative test result (zero cancer cells in a million).
I did get an engraftment fever, which wasn’t a surprise to me, since fevers are kind of my thing and I usually get them when I’m sick. Fortunately, I was able to stay out of the hospital from that.
Where my picc line went into my arm, that started to bleed one day, which was alarming because my platelets were so low. They put a plastic dressing over the line to hold it in place and keep germs out. It filled up with blood and I had a sack of blood hanging from my bicep. Fortunately, my measly number of platelets stopped the bleeding and the dressing just got changed.
The nausea was pretty challenging. Not surprising, since the chemo heftily kills off GI tract cells as well. I was only able to eat a third of what I normally eat, and that was forcing myself to eat. I managed it with ginger tea and drugs. I was told I could drink fresh vegetable juice if I made it myself (which I do anyhow). I feel like that helped my nutrition immensely, and kept my remaining blood cells alive and kept me away from transfusion.
I engrafted (my blood started growing again) on day +10. To my surprise, I was told I could go home on day +13 (I had to move into hospital apartments across the street from the ER, since I lived outside the “safe zone”). I didn’t need a red blood transfusion and I only needed one platelet transfusion.
My hair fell out as expected. I wear a beanie to keep my head warm. When I look into the mirror, I think I look like Toad from Mario brothers. Oh well, good thing it’s not permanent.
There was a park that was in walking range of the Stanford apartment that we walked to every day. There were some amazing oak trees there. Their branches went out horizontally for 20-30 feet from the trunk. I was amazed they didn’t snap off. Oak wood sure is hard.
One of the oak trees. I had a friend tell me I look like a ninja all covered up 😜.
I’m pretty tired all the time. Go to bed tired. Wake up tired. Tired from doing the smallest things. It’s getting old already. I’m the type of person who does things pretty constantly. I have a whole list of things I’m not allowed to do (due to germ, bacteria and mold risks), and it’s hard to get inspired to do things from what I am allowed to do. I don’t golf, but I’m not allowed to golf for 6 months, I think that one is pretty weird 🤪.
I got the picc line pulled out a few days ago, and today I’m allowed to use my right arm again. Even though I’m tired, I’m really looking forward to exercising again. I have been keeping up on my walking, about a mile every day. Call me crazy, but I did an almost 4-mile flattish hike the other day. I really needed to get out into nature. It makes me feel alive and quite frankly, sometimes I feel half dead these days at times.
Well I’m off to the exercise bike, hopefully I don’t collapse from it 🥴. Again, the only way is forward and I’ll keep on trucking….
Eat your vegetables!
It’s California poppy season and boy are they ever blooming after all the winter rain.
From the moment you were conceived, it was 100% guaranteed. Unavoidable, no dodging it. Whether you eat health food or junk food. Whether you have perfect health or have cancer. Whether you have all the money in the world or are dirt poor. It’s the elephant in the room, that people so desperately try to avoid. You are going to die.
Honestly, it’s not a concept that I thought about a lot. I had just completed my roaring thirties. Everything seemed to be going, more or less, according to my plans. I had my goals and I was on a straight path to achieve them.
All of a sudden, I had my “you have cancer” moment and the eventuality was there, looking me in the face. “Holy crap, would you look at that”. It was always there, but the possibility of it was so far off, it was easy to ignore.
You almost have to laugh at the absurdity of it all. Someone just died right now, as I typed these words. People die every day. People live every day. A 25 year old in the prime of life, perfectly healthy, who wasn’t supposed to die, died in an accident. Someone, with stage four cancer, who was supposed to die, got better and is still living.
The longer I’ve thought about it and believe me, I’ve given it some thought, I’ve come to this conclusion. When it’s your time, it’s your time. Not that I don’t believe in free will and willpower to change your perceived destiny. Cancer, treatment for cancer, accidents, pneumonia and whatever you can imagine, isn’t going to take me until it’s my time.
I think fear, hits the nail on the head for most people, when it comes to death. I do personally believe in a soul, an afterlife and reincarnation, so that is somewhat helpful in removing fear. Fear of the unknown. I don’t think I fear death, but honestly, that’s easy to say right now. I will see when the time eventually comes, how true that is. Talk is cheap. Nothing like things coming to a head, to test your beliefs and resolve.
Personally, it was interesting for me. My first thoughts after hearing those famous three words from the doctor, weren’t about my well-being. They immediately went to the well-being of my wife and my young children. It was a tremendous weight on me. Would they be alright without me? It felt like I was the Titan, Atlas, holding up the weight of heaven and earth on my back. It was crushing me.
It took me, probably 2 years to set down my gigantic boulder. I realized, no matter how much I wanted, at a certain point, it’s out of my hands. I can put in my best effort, my best foot forward, but at some point, it will just be my time. Death was standing there, looking me in the face, we smiled, and I said “I’ll see you when I’m ready, I have more to do right now”.
I had just come to peace with it.
Life will go on after I pass. My wife’s and children’s lives will go on after I pass. I don’t know if that will happen in a year or fifty, but it will happen. At some point they will pass. Life (and death) will go on.
I have new goals and things that I want to do with my life, before I’m done. I’m curious if I’ll achieve them before I move on.
I’m going to keep living while I’m living. I find the previous sentence an interesting one. Only because, a lot of people don’t actually live life, they just exist. Waiting for something to happen to them, waiting to die? I don’t know, I suppose it’s different for everyone. I like to do a check on myself from time to time. Am I living or just existing?
It’s interesting listening to people with near-death experiences. I think I’ve only heard stories about how warm, loving and life changing for the positive they were.
I don’t know Anita Moorjani personally, but from what I do know of her, I am a fan. She was diagnosed with Hodgkin’s lymphoma and did not elect treatment and ended up near death and in a coma a few years later, dying from lymphoma. She had a near death experience and lost her fear and ended up getting better. Quite an interesting story. She talks about her experience in a Ted Talk if you’re interested.
If you don’t believe in God or an afterlife, here is a scientific viewpoint. Albert Einstein said with his first law of thermodynamics, “Energy cannot be created or destroyed, it can only be changed from one form to another”. You are made up of energy, enough to power a 20 watt lightbulb at any given time. When you die, that energy can’t cease to exist. Where does it go?
In my small world, I can look around me and see people struggling with fear and their own mortality. I advise people to let go. Not to let go of living, but of the fear. Swimming upstream is exhausting, sometimes you just have to go with the flow of life. An orange is still going to be an orange, no matter how much you want it to be an apple.
It’s going to happen no matter what, so stop worrying about it. You are meant to live and you are meant to die. When you are doing what you are meant to do, that should bring some comfort.
I encourage you to think on it. Think about your life and death, and try to find some peace within yourself. After all, death could be the greatest adventure you don’t know about?
We went hiking the other day in Joaquin Miller Park in the Oakland hills. We had been there before, but the park is so large, we decided to go to another entrance, which ended up being a completely different experience due to the park’s size.
We have a big rainstorm hitting California at the moment, but we managed to get a hike in, in between the rain. The Bay Area fog did roll in though, which made it really COLD. Now, I do realize that it wasn’t actually cold compared to other places, but sitting around having a picnic before the hike at 39 degrees felt pretty frosty 🥶.
While hiking, we stumbled upon some reddish orange mushrooms that were pretty cool. There is nothing like moisture and decaying plant matter to spawn mushrooms! I think they are Red Russula mushrooms, but I’m definitely not a mushroom expert. Probably quite poisonous, judging by that they were still there and not collected by someone already. Apparently most red mushrooms are poisonous. We also came across some version of turkey tail mushrooms, which are always cool to see.
Hiking in the foggy redwoods was also a pretty awesome experience. I think redwoods are my favorite kind of tree, with Japanese maples being my second. Redwood trees are definitely an entity and walking in between them, you can feel their presence. These redwoods are second or third generation, as the first was logged for building materials for San Francisco over 100 years ago. So they are big, but not that big when it comes to redwoods.
There is a small grove of untouched redwoods at Henry Cowell State park in the Santa Cruz mountains. There is a tree there that is about 277 feet tall and around 1,500 years old. Can you imagine, with this being the year 2023, this tree started growing in the year 500? Just to give you an idea how large it is, it’s so wide, that it takes 16 adults hand to hand to hug the tree. And this one is still not as big as the trees near Yosemite or in Humboldt up north. They are quite something to see in person. Thinking about my previous post on gifts, these trees are a gift by just being.
And of course, Yukon thought it was the best day ever, that boy loves to hike 😊.
A few days ago, my wife Vasuki and I went on a mini adventure. I saw on a map a few days prior that there was a beach, near Muir beach, that I didn’t know existed. I do enjoy going somewhere new to experience something different or unknown.
If you live in the Bay Area, I do recommend checking out Tennessee Beach located in Marin. It is a hike in beach, about 2 miles each way from the parking lot, but it is a flat hike, so quite easy. The hike itself is quite a nice hike with interesting things to see (wildlife, marshland, trees).
Tennessee beach is a rock beach, which was cool. The colors and formations were amazing. Mother Nature always seems to impress.
Carrots Over Cancer 