Blog, Nutrition

My Stem Cell Transplant Strategy

I had a simple strategy for my stem cell transplant. I thought about the procedure for a little while, and this is what made sense to me. For me, it’s all about increasing odds and outcomes. I viewed this transplant as a major ordeal for the body. You wouldn’t get off your sofa and do a decathlon! Why would it make sense to get off your sofa and do a transplant? I went into transplant training.

The procedure in its essence is killing off your bone marrow and therefore your blood as well. Trying to wipe the slate clean. It is regrown from stem cells that were collected from yourself previously.

My step one, thinking about it logically, I wanted to have the highest quality possible of stem cells that were going to be collected. After all, this little bag of stem cells is what was going to regrown all my marrow.

I’m a huge plant person. Growing plants isn’t complicated. Give them the nutrients, light and water they need in the right amount and they thrive. Humans aren’t much different.

I wanted to spam myself with nutrition. I tend to do that all the time, but I made an extra effort. Your food is your cell’s building blocks. Healthy grains, berries, a rainbow of vegetables, lentils, healthy proteins and oils. Diversity is the key.

(👈🏼 Bitter melon is great for detoxing your liver, yes, it’s very bitter).

Second, I wanted to detox my body as much as I could, from all the chemo and drugs I had done. I mainly did this using a little personal infrared sauna. I sat in the sauna daily at 170 degrees and let my body sweat out the junk it could. Besides the big nutritional benefit of fresh vegetable juice, it also detoxes your organs, particularly the kidneys, liver and intestines.

Thirdly, I increased my exercise regiment. Walking, running, weight lifting and exercise biking. I also made it a priority to go hiking for miles, as much as I had time for. Sweating and heavy breathing, helped detox. Increased breathing, increased oxygen for my cells. Plus, hiking in nature helped my mental facilities and forest bathing can have a positive effect on cells.

Fourthly, I needed to work on my mental game. I increased my breathing, meditation and Qi gong. I felt it was important to have a level calm head, so I could overcome the mental lows that I knew were coming up. I went over breathing techniques in my How to stop freaking out post.

Meditation is the best way to keep control of your mind. Early in my cancer journey, for some reason, I was resistant to meditation. I kept hearing how beneficial it was, and I eventually overcame my resistance. It was the single biggest reason for my mental U-turn out of cancer negativity. I highly recommend learning a simple practice and doing it daily. Qi gong is kind of like a walking meditation (I’m planning a series of posts on Qi gong upcoming).

I also feel that the power of music is underestimated. I worked on creating a playlist of uplifting and positive songs that I could listen to. When you’re down in the dumps, sometimes music can help flip your script. I ended up with a wide variety of genres that clicked with me. I used it to get my positive vibe up, especially while cooking (didn’t you know food tastes better if you dance while it’s cooked?) Although, during the transplant, I mostly listened to my favorite pianists, Ludovico Einaudi and Helen Jane Long (Ludovico’s songs Ascent Day 1 and Nuvole Bianche are epic).

So these were my pre transplant regiment. During transplant, I once more wanted to keep up as much as I could on the nutrition. This was the building blocks of my new cells. I wanted to create good tissue and give my cells what they need to thrive. I was really excited when they said I could drink fresh vegetable juice, I drank it daily.

Besides the vegetable juice, it was also imperative for me to keep up on my fluids. Drinking was also a challenge. I drank water, coconut water and bubbly mineral water for the minerals and it helped with the nausea. I also asked for if fluids every day whether I needed them or not. Certainly high dose chemo is highly toxic itself and the fallout from it is a lot of dead cells. I wanted to flush things out as much as possible once the chemo was done doing its job. You have to protect your kidneys!

(A juice man created by my daughter 👉🏻)

Having my GI tract destroyed was a challenge for wanting to eat anything. I mostly ate my normal breakfast just in a smaller portion. Mung beans and vegetables for lunch and whatever I could get down for dinner (by dinner I usually wasn’t interested in eating at all). I do feel like having the wholesome diet helped a lot with not having extreme nausea and keeping my blood and electrolytes up.

It was also important for me to keep moving every day and get exercise through it. After breakfast, I would do my Qi gong exercises. I would then take a rest and then no matter how tired I was, I’d scrape myself off the sofa and go walking in the park every day. I do believe movement is life and if you want to keep living, keep moving.

I’ve gone back to my pre transplant regiment except for the sauna, which I’m not allowed to do until day +60. I have random pain in some of my tissue, which can be a sign of toxicity. I’m looking forward to some good sweating. My GI tract went back to some semblance of “normal” at around day +27. The doctors and nurses keep telling me how good my blood numbers are. I feel like I got through it easier than some people, from reading their stories.

This is my strategy, I guess we will see where the chips end up. If the myeloma is going to thrive through all this, it’s going to have to do it eating broccoli.

Blog

Four Years

Today is my four year cancerversary. Four years ago today, I heard the “you have cancer” words and my life flipped upside down.

I’m still here, I have no idea what the myeloma is doing. I usually don’t pay much attention to this date, but for some reason this year it’s sticking out. Maybe, since I just went through a stem cell transplant.

Life has changed so much in the last four years, it will be interesting to see where life is at in another four years.

Blog, labs

Stem Cell Transplant Labs

I thought it may be interesting for Myeloma people to see my stem cell transplant labs. It’s a ton of data, there is a scroll bar on the bottom of each table, but it gives a pretty good picture. There are blanks on the “cytes and phils” because there weren’t any to measure at a certain point.

Stem cell collection on 3/31 (note the sky high white blood cells to be collected)

High Dose Chemo on 4/11

Stem Cell Infusion on 4/13 (interesting to see the decline and then the climb)

NAME (STANDARD RANGE)3/20/233/31/234/10/234/13/234/14/234/15/234/16/234/17/234/18/234/19/234/20/234/21/234/22/234/23/234/24/234/26/235/2/235/11/23
Basophil % (%)0.2 0.20.2  0.0         0.30.2
Basophil, Absolute (0.00 – 0.25 K/uL)0.01 0.010.01  0.00         0.010.01
Eosinophil % (%)1.8 0.80.2  1.0         0.35.9
Eosinophil, Absolute (0.05 – 0.55 K/uL)0.10 0.040.01  0.03         0.010.24
Hematocrit (40.0 – 52.0 %)33.336.832.630.929.729.327.928.427.225.723.421.721.519.520.721.125.128.3
Hemoglobin (13.5 – 17.7 g/dL)12.213.211.911.110.510.610.310.510.310.09.28.58.17.47.68.09.010.2
Imm. Granulocyte, % (0.0 – 0.7 %)0.4 0.20.2  0.7         0.60.2
Imm. Granulocyte, Abs (0.00 – 0.06 K/uL)0.02 0.010.01  0.02         0.020.01
Lymphocyte % (%)18.1 18.07.4  1.4         26.127.7
Lymphocyte, Absolute (1.00 – 3.00 K/uL)1.02 0.920.31  0.04         0.871.13
MCH (27.0 – 34.0 pg)34.034.333.733.533.833.433.233.033.934.033.933.532.433.231.933.533.334.1
MCHC (32.0 – 36.0 g/dL)36.635.936.535.935.436.236.937.037.938.939.339.237.737.936.737.935.936.0
MCV (82.0 – 98.0 fL)92.895.692.493.495.592.490.089.389.587.486.385.486.087.487.088.393.094.6
Monocyte % (%)9.0 7.03.3  0.0   
      22.217.6
Monocyte, Absolute (0.30 – 0.95 K/uL)0.51 0.360.14  0.00         0.740.72
Neutrophil % (%)70.5 73.888.7  96.9         50.548.4
Neutrophil, Absolute (1.70 – 6.70 K/uL)3.98 3.783.72  2.77         1.681.97
nRBC, Abs (K/uL)0.00 0.000.00  0.00         0.000.00
nRBC, % (%)0.0 0.00.0  0.0         0.00.0
Platelet count (150 – 400 K/uL)1651251461049585856554362215717203490110
RBC (4.40 – 5.90 MIL/uL)3.593.853.533.313.113.173.103.183.042.942.712.542.502.232.382.392.702.99
RDW (11.5 – 14.5 %)13.113.713.113.212.912.212.311.811.811.511.211.211.111.111.511.616.617.2
WBC (4.0 – 11.0 K/uL)5.645.45.14.24.03.62.91.40.30.1<0.10.10.10.32.02.63.34.1

NAME (STANDARD RANGE)3/20/233/31/234/10/234/13/234/14/234/15/234/16/234/17/234/18/234/19/234/20/234/21/234/22/234/23/234/24/234/26/235/2/235/11/23
Albumin, Ser/Plas (3.5 – 5.2 g/dL)4.7 4.74.24.04.34.24.44.34.23.94.24.03.93.94.04.44.5
Alk P’TASE, Total, Ser/Plas (40 – 130 U/L)55 69565554565658585957534851515251
ALT (10 – 50 U/L)20 17111315151315141011101012121630
Anion Gap (5 – 15 mmol/L)10 911111211121011111011119799
AST (10 – 50 U/L)15 1591314111215111211141212111621
Calcium (8.4 – 10.5 mg/dL)9.4 8.98.68.38.98.88.88.88.98.78.68.48.38.78.38.99.3
Chloride, Ser/Plas (98 – 107 mmol/L)106 109105106106104106104102104101103105106107107105
CO2, Ser/Plas (22 – 29 mmol/L)24 24232122222222212122201822232425
Creatinine (0.67 – 1.17 mg/dL)0.70 0.680.680.570.600.600.600.640.650.670.650.620.660.550.590.620.74
EGFR (>60 mL/min/1.73 m2)117 118118124122122122120119118119121119125123121115
Fasting                 No
Globulin (2.0 – 5.0 g/dL)1.2 1.31.31.21.11.31.41.51.41.51.21.21.31.71.41.21.6
Glucose, SER/PLAS (Manual Entry) See EMR for details (70 – 140 mg/dL)100 10812712711011411210510510710614611310411710297
Potassium (3.5 – 5.5 mmol/L)3.64.04.13.93.84.54.04.24.34.34.14.13.73.74.24.43.94.0
Protein, Total, Ser/Plas (6.0 – 8.3 g/dL)5.9 6.05.55.25.45.55.85.85.65.45.45.25.25.65.45.66.1
Sodium (135 – 145 mmol/L)140 142139138140137140136134136133134134137137140139
Bilirubin Total (<1.2 mg/dL)0.8 0.60.90.60.50.60.70.60.90.90.90.80.70.50.40.40.5
Nutrition

Stanford Nutrition Guidlines

I was on my way out the door from Stanford a few weeks ago, and I was given this document about nutrition. I must confess, I rolled my eyes a bit and said sarcastically, “this ought to be good”.

To be fair, the nutritional advice that I got from my regular provider is “eat a bunch of doughnuts to gain some weight”. Also, during my transplant, I don’t know how many times I was told to eat ice cream and drink gatorade (which I didn’t do). So, I was expecting more of the same advice as I was on my way out.

I started reading and my jaw hit the floor in shock. I told my wife, “Wow, this is actually really good”. It’s so good, that I wanted to share it with you.

It’s solid advice whether you have cancer or you want to avoid getting cancer (or other chronic illnesses). I feel if all Americans adopted this diet, 75% of illnesses would go away or be prevented automatically.

One of my favorite lines from it is, “At least 2/3 of your plate should be comprised of fruits, vegetables, minimally processed grains, and beans”. I think most people’s plates are the opposite or worse. Observe what your plate looks like at your next meal.

Here you go. Give it a try.

Blog

Random Acts Of Kindness

Last year, a stranger gave me this special regal geranium plant. It was just leaves when I got it, but I could tell from the leaves what it was. It was a variety of geranium that I wanted to grow, so I was pretty excited to get one.

I spent the last number of months looking after it, making sure it had what it needed to thrive and I was rewarded this. Definitely a showstopper in the yard.

I’m grateful for random acts of kindness.



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Plus 23

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.
Blog

My Central Catheter Humor

I had a central tunneled catheter placed in my chest for harvesting my stems cells and transplant. I got to the operating area early in the morning and waited for my name to be called. After 15 minutes or so I was called and walked back to the prep area with the nurse.

She gave me a gown and told me to change. When I was done, she asked,

“Do you have a hairy chest?”

“Umm…. Yes?”

“I’m shaving it off.”

“Ok”

So she had me lay down on the bed, open up my shirt, and she got to work. Buzz buzz buzz. It turns out she only needed to shave my upper part of my chest, right above my nipples, all the way across.

I saw myself later in the day, shirtless in front of a mirror. Clear skin on the top and a hair bottom. It looks like I have a tube top on. Too bad I’m not busty. Actually, I take that back, I’m not interested in man boobs.

Speaking of boobs, the way they placed the catheter, I had both lumen ends in my armpit, which was a bit annoying. I was telling my family this, and said,

“I’m going to start wearing a bra just to hold my tubes from swinging around.”

My daughter quickly volunteered to take me bra shopping.

Anyhow, the catheter did its job. It turns out, one of my ends fell apart after stem cell collection and no one noticed. Come to find out, without the ends on, it’s like having a (clamped) plastic vein hanging out of your chests. Due to the infection risk, they yanked it out, only after a few days of having it. A week later they installed a picc line in my arm for the high dose chemo and stem cell rescue procedure.

I’m at day +5 right now for the myeloma people out there, and I’m hanging in there.

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7.1

The Stanford apheresis nurse called in the evening to let me know if they got enough stem cells. She sounded a little downtrodden, and I started to think, “Dang, I guess they didn’t get enough and I have to go back tomorrow”.

Then she got excited and told me they got a whopping 7.1 units in 4 hours. The goal was 4. For perspective, it takes 2 units for the transplant, to regrow your blood, and they want an extra 2 as back up, in case the first set fails. Guess I could do it 3 times, if it’s fun 🤪?

I guess all those vegetables helped out? It’s hard to get too excited about it though. I feel like I’ve cleared 1 hurdle and still have another 20 to go. Still, I’ll take my small wins where I can.

I get to go home and have a week off before the big test starts….