Adventure #2, as of Dec 16

Hi Folks,
Here’s an update from my musings and activity from Dec 9 – 16 on this adventure back into PTCL-NOS. Please note I have no intent to make people feel dismayed (some of you commented some of this is bleak – yikes). Life is good, in a 1,000 ways. These notes are about that sliver of existence that runs in parallel to that river of whimsy, that’s all, and what has surprised me along the way.
Quotes I Kept in Mind Last Week:
I cannot change the direction of the wind, but I can adjust the sails to reach my destination.
James Dean.
Day after day, O lord of my life, shall I stand before thee face to face?
With folded hands, O lord of all worlds, shall I stand before thee face to face?
Under thy great sky in solitude and silence, with humble heart shall I stand before thee face to face?
In this laborious world of thine, tumultuous with toil and with struggle, among hurrying crowds shall I stand before thee face to face?
And when my work shall be done in this world, O King of kings, alone and speechless shall I stand before thee face to face?
Thanks Yous
So many. Here’s just a few. To Mom for a 1,000 things she does, pesters me about and dotes over. (“Our kids” are, well, always our kids, no?) To my cousin Niseema who chauffeurs Mom and myself to & from my infusions. To Mary, one of the parents of the Interlake HS Cross Country, who brought over breakfast last week. To my sisters, aunts and uncles who pray for me, call in (mostly to my Mom,) to get updates, share LOTS of ideas, and wish me well. To Sebastian for yet another long meandering WhatsApp call over the weekend from Munich, to verbally loiter, strategize and catch up. This is the lesser noticed part of my treatment regime.

I have completed 4 of six infusions. So far, no nausea or other side effects.
I try not to think much as to whether my treatment is working. Speculation can be a double edged sword. I do know that a number of painful bumps around the base of my skull have largely diminished. And one of my lymphedema’s is now also much smaller. But the “Death Star” tumor in my left underarm, and the junior sized one in my right underarm do not appear to have changed. As we say now and then, it is in God’s hands, no?
New Insurer as of Jan 1
To quote Wizard of Oz, “ding dong the witch is dead.” That is, Kaiser Permanente of Washington. I have used our ObamaCare portal and swapped out Kaiser, who was a kettle of fish in terms of denying me access to SCCA, and will start a different insurance provider as of Jan 1. From both rounds of lymphoma, I have the same observation: your healthcare insurance & providers can create more stress and worry than the malady itself. All too often, it will not be apparent in advance that trouble is brewing. It is what it is.
Toes and Needles. 
What’s the most painful action you could take to yourself? It’s simple for me: stub my toe. There have been times I slammed my big toe into a door or wall so hard, I was sure I broke it. Yet I have no fear of doors and walls.
But, I am very skittish about needles. It’s up there with spider webs. It makes no sense. The sensation is a very, very minor pin prick. Nowhere in the league of toe stubbing.
For each blood test and infusion, I need to chill, breath slowly and hold down my mental fort.
So last week, I decided to watch every second of the infusion prep. First some context. Infusion nurses are super experienced and super dedicated to helping people in harsh medical situations. … it’s whom you want on your side.
As the attending was prepping the various gadgets and materials, I asked, “Why do you look for a vein in the back of my hand?”
She answered, “Blood in your veins flows from the extremities to the heart. If we don’t get it right on the first try we want to go downstream. That avoids any risk of the prior puncture being a place the drugs can leak.”
Made sense. And in all my time getting infusions and IVs, we have always nailed in the 1st time.
She tourniqueted my forearm, found a vein, swabbed it with cotton and inserted the tiny needle. I took long slow breaths, and forced myself to notice the scale of the pain if measured on the “Toe Stub Scale,” – – TSS. Perhaps .01 TSS. Yes, I felt a whisper of pain. Almost inaudible.
Once done, a plastic, flexible tube (a super narrow catheter) slides over the needle, below the skin and into the blood vein. Then she hits a button and the needle retracts. Nice! All in 7 seconds.
If successful, the tubing should fill with blood. But, nothing. The nurse said, “Hmmm I think we hit a valve in the vein.” It was pretty wild. This teeny, tiny mechanism in my vein was not allowing any flow. I felt kind of happy – this particular valve was working. Working great actually.
The nurse removed the apparatus, and chose a location in my forearm. Here my veins are harder to see. I watched something I would never have in the past. The needle went in. Another teeny, tiny prick. She slid it to the left. Nothing. Back out a bit, slide to the right. Nope. She tried a few more times with no luck. My emotional side was thundering at me. My logical side said, dude, there is zero pain of any kind. Wow. Mom was looking away the whole time.
When you miss twice, they have another infusion nurse try. The second nurse went for the big vein on the inside of my elbow. Done. I thought of my fear of needles and lack of fear of stubbing toes. Odd.
An Uncommon Oncologist
I am blessed that the specialist at SCCA, Dr. Andrei Shustov, is a medical all-rounder. He cares. He listens. He explains in simple yet eloquent terms the available options and implications. And collaborates on the treatment decision. That’s on top of the required smarts. If anything, I felt dismayed to think many folks have a “command and control” oncologist who won’t be guiding their patients as he does.

He also runs an annual patient community meetup to share the latest in lymphoma research. I learned 3 interesting things at the event this past Saturday.

  1. You “live with” your immune system, which is akin to a Mafioso. My colorful view is your Immunity is the Mafia Don that runs your body. It has the power to wreak havoc both on invading pathogens and on your own organs and systems. But the Don learns what is part of “you” and if it functions correctly, will not harm “you.” When outside bacteria invades? That’s a different story. The Don sends its consigliere, Helper T Cells, to “case the problem.” With such substances as cytokines, the consigliere, Helper T Cells, identify the right henchman needed for this job (you know, the head crackers, knee poppers, and knuckle breakers), replicate a couple of million of them and unleash them. These are the Killer T-cells. The battle is merciless and almost always, successful. When the problem is over, the excess T-cells are literally killed off. Yes, immunity is a brutal world, no? So a symphony of terror and thugs live in you every day.
  2. Pre-positioned for trouble. You inhale 10,000 bacteria with each breath. That’s why your lungs and chest cavity have a concentration of your immune system. So too, around the mouth and throat, given “trouble” enters this way. Where else? The underarms. Why? Back in our hunter-gatherer days we routinely cut our fingers and hands. So as pathogens flow up the blood system, T-cells meet them. Lastly in our groin, as we also used to lacerate our feet. Again, our immune system greets the invaders as they arrive. Wow.
  3. Exaggerated word. Dr. Shustov explained two broad treatment paths exist (I think I shared some of this before.) Treat versus Cure.
    • Treat” is akin to using insulin if you have diabetes. You don’t cure the diabetes but you have good quality of life. Medicines that are in the treat category aim to trigger remission for a few years and enable quality of life.
    • Cure“… that is a super charged word. It annoys me frankly. It suggests we will eradicate this malady. But at a stunning physiological cost. Deafening levels of chemo are unleashed in the process of transplanting someone else’s immune system. After year 1, as much as 30% of patients have perished.
    • Those who do now have an immune system that does not know your body. Like a Mafioso mentioned above who cannot tell local shop owners from external thugs. So you live with Graft Versus Host disease (GvHD) for the rest of your life.
    • Then there’s the non-medical costs. You may be in the hospital for 4 months. Family members will turn their lives upside down to be with you, and financial issues can crop if jobs are lost in the process.
    • “Cure?” Seriously? It’s not the best word, no?  (In similar manner, if you read The Emporer of All Maladies, you learn how Dr. William Halsted invented the mastectomy and radical mastectomy. If a cancer has spread beyond the breast area, surgery was irrelevant. But dire situations make people look for extreme measures. “Radical mastectomy” just sounds like more firepower than “chemotherapy.” The damage was profound for many women and it took a long time to correct.)
Hiking Poles
My fatigue is a real battle. Walks are vital but feel like mountainous affairs. Then I recalled meeting Andrew Skurka at a team event at Microsoft years ago. He’s an extreme solo hiker and all-round great guy (he has hiked: across the US; the perimeter of Alaska; every major trail in North America). He has an awesome gear book. He mentioned hiking poles offload 25-40% of the workload from your legs to your arms. So I used my hiking poles for the evening walks with Mom. What a great difference it made. Thank you Andrew!
Never Forget Home Remedies
My throat has been ridiculously sore at night. Why? I don’t know. It’s not tonsillitis nor mucositis. Just soreness. After 4 weeks of this, my Kaiser oncologist suggested “Do you do salt water gargles?” Ah, of course. A hot glass of water with a lot of salt. Gargle. Ridiculous how much better my throat feels. (How? The salt concentration creates osmotic pressure – drawing out fluids in your mouth and throat tissues, and breaks up thick mucus. The salt also creates a barrier that locks out water and harmful pathogens from getting back inside.)

Happy, Happy, Holidays
While some parts of my body are broken, life is still grand. The Holiday Season and all its puzzling excess, but also the great food, companionship, all of this abounds. I hope you are part of this in a big way in the coming weeks and carry that frame of mind into 2020. 

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