Jothi Sendan’s myeloma cancer journey, thoughts and ideas
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.
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.
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!
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.
A number of my labs look like this. My poor cells after getting hit with high dose chemo. I hope the myeloma cells are following a similar trajectory 😅…..
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….
I’m at the Stanford cancer center right now. I’m sitting in a chair having my blood pumped out of my body. It’s laying across my chest and lap, on its way to a machine to filter out my blood stem cells. Another line, from the outlet on the machine, is running up my lap and chest and going back into my body. It’s rather odd (and maybe a bit grody) seeing your blood outside your body, in your lap, going in and out of your body. At times, I feel like my bones are exploding from the stem cell growth factor drug affecting my marrow.
I had to go to the infusion center last night to get a drug that encourages my blood stem cells to leave my marrow to go into my blood, so it could be collected today.
I saw my chemo chair, this one colored orange. It was in a large room that has multiple treatment chairs in it, separated by curtains, that is typical for these rooms. All types of cancer are treated in this infusion center.
I sat down in the chair, awaiting the nurse to run all the regular pre-checks, blood pressure, oxygen level, temperature, etc. She had to run off to do something else. I scooted my butt back and forth in the chair to get comfy.
The room was mostly empty, since it was at night, except for the chair next to me. Almost as soon as I sat down, a nurse went to the woman sitting next to me. I couldn’t see her, since the curtain divided the spaces, but I could hear everything.
“I have some bad news, unfortunately” said the nurse.
“Your labs just came back. It showed that your kidneys are starting to fail and your liver is in trouble. We need to run an EKG to check your heart.”
“Your tumor burden is too much for your organs.”
“We need to admit you to the hospital right now to help clear out your kidneys and liver.”
My heart went out to this woman. I wanted to get up and go over and give her a hug.
A soft sob came from the other side of the curtain.
“How long do I have to be hospitalized for?”
“We aren’t sure, at least a couple of days.”
My nurse came back.
She started saying to me, “Do you have this problem, that problem?
“No” I said, a bit guiltily.
Part of me felt guilty, I don’t know, humans are a bit odd. I guess, I was experiencing some survivor guilt? My situation has nothing to do with hers, and I suppose I could be in a similar situation in a few weeks with the nuclear bomb drop happening on me (sct).
There is really not much I could do for this person, but I still wanted to do something. The feeling of wanting to control a situation that I have absolutely no control over.
I finished my treatment. I was going to go over and just offer a few words of encouragement to this woman, after she was just crushed. But by the time I was done, so many nurses and even some family members showed up, her area was packed with people and activity.
I’m pretty sure I would have just been in the way, so I left.
I couldn’t help thinking, if my few words would had made any difference for her. Or if I wanted to say something, maybe subconsciously, just to make myself feel better about her situation.
Our time will come for all of us at some point. I’m grateful that I’ve found some peace within myself. It was just another reminder for me to be grateful for what I have and the health I have, whatever level that is.
Hot off the press, my latest numbers. Not much new. Although, my ratio of Lambda and Kappa finally are at a normal ratio, which it’s been awhile since that happened. Things do look pretty good though, despite the weekly chemo hammerings.
I’m marching towards high dose chemo with stem cell rescue (SCT) at Stanford, with collection at the end of this month. High dose chemo and stem cells infused back around April 10th. I feel pretty grateful that I’ve been referred to them for this procedure.
My last zap of chemo is on March 11. My self-imposed training regiment begins after that. I want to be in high gear physically and mentally. My goal is to restore and revitalize my cells and organs as much as possible prior to collection.
I have a meeting with two Stanford nutritionists tomorrow, I hope I learn something. The last time I had a meeting with a nutritionist, I was teaching them things. “Oh wow! I didn’t know that”, they said. As I’ve mentioned previously, I’m pretty passionate about nutrition.
But, I would like to point out, because sometimes I feel like I’m on a box preaching about nutrition, with no one listening. I feel like most people, if not all, would say Stanford is pretty top notch, as far as health care. They are making a point about how important nutrition is while you go through this procedure.
I’ve known people who have gone through medical procedures, and they’ve said to me that they want to eat really healthy and well, so they recover quickly. I find it funny, how it doesn’t compute with them about eating good food all the time, and they go back to eating garbage food after they’ve healed.
I’ll get back up on my box and say it matters all the time….
| Component | Your value | Standard range |
|---|---|---|
| IgG, urine, electrophoresis | <0.6 mg/dL | <=0.5 mg/dL |
| IgA, urine, electrophoresis | <0.5 mg/dL | <=0.4 mg/dL |
| IgM, urine, electrophoresis | <0.7 mg/dL | <=0.6 mg/dL |
| Component | Your value | Standard range |
|---|---|---|
| Creatinine | 0.77 mg/dL | <=1.34 mg/dL |
| Component | Your value | Standard range |
|---|---|---|
| Bilirubin, total | 1.2 mg/dL | 0.2 – 1.2 mg/dL |
| Component | Your value | Standard range |
|---|---|---|
| Neutrophils, Automated Count | 3.2 K/uL | 1.8 – 7.9 K/uL |
| Lymphocytes, Automated Count | 1.3 K/uL | 0.9 – 3.2 K/uL |
| Monocytes, Automated Count | 0.5 K/uL | 0.3 – 0.9 K/uL |
| Eosinophils, Automated Count | 0.1 K/uL | 0.0 – 0.4 K/uL |
| Basophils, Automated Count | 0.0 K/uL | 0.0 – 0.1 K/uL |
| Immature Granulocytes, Automated Count | 0.0 K/uL | 0.0 – 0.1 K/uL |
| Neutrophils %, Automated count | 63 % | % |
| Lymphocytes %, Automated count | 25 % | % |
| Monocytes %, Automated Count | 10 % | % |
| Eosinophils %, Automated Count | 2 % | % |
| Basophils %, Automated Count | 0 % | % |
| Component | Your value | Standard range |
|---|---|---|
| WBC COUNT | 5.2 K/uL | 3.7 – 11.1 K/uL |
| Red blood cells count | 3.73 M/uL | 4.10 – 5.70 M/uL |
| Hgb | 12.7 g/dL | 13.0 – 17.0 g/dL |
| Hematocrit | 35.6 % | 39.0 – 51.0 % |
| MCV | 95 fL | 80 – 100 fL |
| RDW, RBC | 13.3 % | 12.0 – 16.5 % |
| Platelets count | 154 K/uL | 140 – 400 K/uL |
| RBC’s, nucleated | 0 /100WC | <=0 /100WC |
| Component | Your value | Standard range |
|---|---|---|
| SPEP INTERPRETATION | SEE ABN | |
| Homogeneous Band In Gamma Region. | ||
| M-protein band 1 | SEE ABN g/dL | <=0.0 g/dL |
| M-Band detected; not quantifiable. | ||
| NameStandard range | 1/6/23 | 2/3/23 | 3/2/23 |
|---|---|---|---|
| KAPP/LAMB FR 0.26 – 1.65 | 0.39 | 0.73 | 1.13 |
| KAPPA LIGHT CHAIN FREE 3.30 – 19.40 mg/L | 2.25 | 2.14 | 3.91 |
| LAMBDA LIGHT CHAIN FREE, SERPL 5.71 – 26.30 mg/L | 5.82 | 2.92 | 3.45 |
| Component | Your value | Standard range |
|---|---|---|
| Beta-2-microglobulin | 1,543 ug/L | 900 – 2,300 ug/L |
| Component | Your value | Standard range |
|---|---|---|
| Potassium | 4.0 mEq/L | 3.5 – 5.3 mEq/L |
| Component | Your value | Standard range |
|---|---|---|
| ALT | 14 U/L | 0 – 47 U/L |
As it turns out, one of the rare side effects of dexamethasone is uncontrolled hiccups. And guess what? I am lucky enough to have that side effect.
It was kind of funny the first time it happened, years ago now. Hic hic hic. I tried all my normal methods of stopping hiccups. Held my breath. Drank some water. Held my breath and drank some water, etc. Nothing worked. Hic hic hic. I thought they would just go away with some time. They didn’t.
I was hiccuping for hours and things were starting to get hairy. I was hiccuping up stomach acid, and it was getting painful, and I couldn’t get it to stop!
It turns out there is a simple solution for any hiccups, unstoppable or regular. Also, the great thing about it, it stops them very quickly.
Sucking on a lemon wedge. Something about the sour and the sucking motion, wipes out hiccups almost instantaneously. Plus, who doesn’t look great with a lemon wedge there instead of teeth, added bonus!
All you have to do is bite a little bit on the lemon flesh, to release the juice, and suck on the wedge like a pacifier. Make sure you are swallowing the juice as you do it. I was a little concerned when I was hiccuping up acid, adding more acid (lemon juice) to acid, but it stopped them so quickly, I almost felt like my esophagus’s life had just been saved.
Now if they ever start, I get a lemon wedge right away and not let it get that far. There you go. I hope this saves your esophagus’s life or at least some sanity from not hiccuping forever….
By Breathing of course.
Have you ever given awareness or paid attention to your breathing? Sometimes when I’m watching TV in the evening, I’ll randomly do a check in, to see how my breathing is going. Sometimes, I’m surprised to find that I’m breathing rather shallow. Especially, I notice it when I’m watching sports and I want my team to win. I’m stressing out over something silly, like a sports game, that actually doesn’t matter at all.
Working, driving, family, friends, money, pets, a chronic condition, waiting on test results, any number of things or life in general, can be stressful!
I’ll let you in on a secret of mine.
I’m afraid of needles, especially blood tests. I laugh at the irony of it all the time. Go figure, I would get a blood cancer.
For months, in the last number of years, I have had to go in for weekly blood tests. I could feel myself wind up as the days went by, to see the vampires, got closer and closer. Feeling that heavy pit in my stomach. Sitting there, in the chair, as they put that rubber band on your arm. Waiting as they are about to stick in the needle. Darn! They missed the vein, now they have to dig around for it or stick me again (I actually have easy veins too). Sometimes, I break out in a sweat, heart pounding. Shaking, when it’s all over.
Well, that doesn’t sound like a good state to be in.
I was just put into fight or flight mode, and I need to be in rest and repair mode as much as possible. A person doesn’t think clearly when they are in fight or flight state.
Breathing is the best way to get back into rest and repair mode and stop stressing or freaking out. It doesn’t matter the reason you are freaking out for these techniques to work. Sometimes just giving awareness to your breathing can be helpful. Just recognize and correct the situation.
I would like to give credit first, mainly because I don’t think it’s said enough, to India, to yoga, to preparing to meditate and meditation. Not to our western version of yoga, the real deal thing developed in India, where these breathing techniques come from. I will always be grateful for the life altering practices that I learned there.
Technique 1:
Alternative Nostril Breathing. This is my personal go to. I do it when I feel stressed and need to calm down and reset.
Begin by holding your right nostril closed and breathe in through your left.
Next, close your left nostril and breathe out through your right nostril.
Keep holding your left nostril closed and breathe in through your right nostril.
Then close your right nostril and breathe out through your left.
This completes one set. Try and count to yourself the same number of counts breathing in and keep it the same number breathing out. Whatever number is comfortable for you. (I’m pretty sure I missed my calling as a nose model, what do you think? 🤪)
I also do a version of this, for at least 10 minutes, every night before I go to sleep. This version must be done when you are calm and not stressed. It’s the same except, you hold your breath for a count of 1 after you inhale both times.
Technique 2:
Sigh Breathing. I really like this one too. I do enjoy a good sigh.
Technique 3:
4-7-8 Breathing. This one is amazingly good and quick for snapping you back into instant clarity. I think maybe it has to do with the lack of oxygen coming in at times. Again, alternative nostril breathing is my number one choice, but this one is really helpful in certain situations.
A quick note on counting. Make sure you are counting the same way, with the same timing. I can count to 8 in the same time as 4, but that defeats the purpose of doing these breathing exercises. 8 should be twice as long as 4!
Technique 4:
Square Breathing. I don’t use this one much, but I know people who really like it.
Technique 5:
Straw Breathing. This is a fantastic one for kids.
For me personally, I can get through my bloods tests and IV’s fine now (and most other things), without freaking out. I’m still very much a work in progress.
I was trying to think of a number 2 for de-stressing besides breathing. Breathing is number one on my list because it’s so effective, it doesn’t cost you anything, and you can do it anytime and anywhere. I would say that exercise would be number 2. But it’s funny though, if you’re exercising, give awareness to your breath, and you’ll notice you breathe very deeply and rhythmically, usually the same count in as out. So in the end, is it breathing again?
Breathing is so amazingly simple and it is so amazingly effective. This should give you a number of tools to help you get through life or de-stress. I hope you find one that you like.
Breathing will help you regain yourself when you lose yourself. But if you want to keep a level head and not lose yourself to begin with, meditate daily, but that’s a whole other topic…
Here is my latest set. Not a whole lot changed. My light chains are now both low. I guess the drugs are really hammering them. M-band is too low to quantify. Some of the CBC’s are up and the others a down a bit.
I had another bone marrow biopsy as well. Results showed the myeloma is under 1%. Previous test showed 20%, so that was a huge drop in 3 months. They ran another fish genetics test as well for some reason. That came back normal, I do have the 1q gain and the 14:16 myeloma genetics, that show up when there is enough myeloma.
| Name Standard range | 12/9/22 | 1/6/23 | 2/3/23 |
|---|---|---|---|
| KAPP/LAMB FR 0.26 – 1.65 | 0.29 | 0.39 | 0.73 |
| KAPPA LIGHT CHAIN FREE 3.30 – 19.40 mg/L | 3.55 | 2.25 | 2.14 |
| LAMBDA LIGHT CHAIN FREE, SERPL 5.71 – 26.30 mg/L | 12.07 | 5.82 | 2.92 |
| Component | Your value | Standard range |
|---|---|---|
| Creatinine | 0.72 mg/dL | <=1.34 mg/dL |
| Estimated Glomerular Filtration Rate | >60 mL/min/1.73 m2 | =60 mL/min/1.73 m2 |
| Component | Your value | Standard range |
|---|---|---|
| Bilirubin, total | 1.0 mg/dL | 0.2 – 1.2 mg/dL |
| Component | Your value | Standard range |
|---|---|---|
| ALT | 16 U/L | 0 to 47 U/L0 – 47 U/L |
| Name Standard range | 12/9/22 | 1/6/23 | 2/3/23 |
|---|---|---|---|
| HCT 39.0 – 51.0 % | 35.8 | 34.9 | 35.1 |
| HGB 13.0 – 17.0 g/dL | 13.2 | 12.4 | 12.4 |
| MCV 80 – 100 fL | 89 | 94 | 97 |
| NRBC <=0 /100WC | 0 | 0 | 0 |
| PLT 140 – 400 K/uL | 177 | 177 | 184 |
| RBC’S 4.10 – 5.70 M/uL | 4.02 | 3.72 | 3.63 |
| RDW, RBC 12.0 – 16.5 % | 14.9 | 15.2 | 13.8 |
| WBC 3.7 – 11.1 K/uL | 4.4 | 4.7 | 5.5 |
| Name Standard range | 12/9/22 | 1/6/23 | 2/3/23 |
|---|---|---|---|
| BASOS % AUTO % | 0 | 0 | 0 |
| BASOS ABS AUTO 0.0 – 0.1 K/uL | 0.0 | 0.0 | 0.0 |
| EOS % AUTO % | 1 | 2 | 4 |
| EOS ABS AUTO 0.0 – 0.4 K/uL | 0.0 | 0.1 | 0.2 |
| IMMAT GRANS ABS AUTO 0.0 – 0.1 K/uL | 0.0 | 0.0 | 0.0 |
| IMMAT GRANULO % AUTO % | 0 | 0 | 0 |
| LYMPHS % AUTO % | 25 | 28 | 28 |
| LYMPHS ABS AUTO 0.9 – 3.2 K/uL | 1.1 | 1.3 | 1.5 |
| MONOS % AUTO % | 14 | 12 | 12 |
| MONOS ABS AUTO 0.3 – 0.9 K/uL | 0.6 | 0.6 | 0.6 |
| NEUTROPHILS % AUTO % | 61 | 58 | 56 |
| NEUTROPHILS ABS AUTO 1.8 – 7.9 K/uL | 2.7 | 2.8 | 3.1 |
| Name Standard range | 12/9/22 | 1/6/23 | 2/3/23 | 2/3/23 |
|---|---|---|---|---|
| ALB 3.8 – 5.0 g/dL | 4.3 | 4.2 | 4.5 | |
| ALPHA 1 GLOB EP 0.2 – 0.4 g/dL | 0.3 | 0.3 | 0.3 | |
| ALPHA 2 GLOB EP 0.5 – 1.0 g/dL | 0.4 | 0.4 | 0.5 | |
| BETA GLOB EP 0.6 – 1.2 g/dL | 0.6 | 0.6 | 0.6 | |
| GAMMA GLOB EP 0.7 – 1.8 g/dL | 0.6 | 0.4 | 0.4 | |
| TP 6.0 – 7.7 g/dL | 6.2 | 6.2 |
| Name Standard range | 12/9/22 | 1/6/23 | 2/3/23 |
|---|---|---|---|
| M-BAND-1 <=0.0 g/dL | 0.4 | SEE ABN | SEE ABN |
| SPEP INTERPRETATION | SEE ABN | SEE ABN | SEE ABN |
RESULT
Normal FISH Result
1q (CKS1B) Gain: not detected
t(4;14) (IGH-FGFR3) Fusion: not detected
9p (JAK2) Gain: not detected
11q (CCND1) Gain: not detected
t(11;14) (IGH-CCND1) Fusion: not detected
t(14;16) (IGH-MAF) Fusion: not detected
t(14;20) (IGH-MAFB) Fusion: not detected
17p (TP53) Deletion: not detected
Carrots Over Cancer 