Hello, fellow athletes.
Sorry I was a columnar no-show last month; I had two operations in six days, which left me eleven pounds lighter and quite puny.
In August, I spoke of miracles. I also quoted the adage "Call on God, but row away from the rocks," and went no further -- that was for another column.
So here we are now. Shall we row? Or how about you row, and I'll stand over here and applaud; honestly, I have no strength for anything physical.
And yet, the doctors were pleased I left the hospital during my three days of confinement, even just to totter around the city. This time around, I needed to take the tram or bus just as often, hoisting myself up the steps with the handicapped bar, or letting Marcelo boost me.
Act your way into right thinking, I tell myself. Bring the body and the mind will follow.
It's just that the spirit is willing, but the flesh is very weak. So should I be talking about the mental part again? How when one is nearly immobile, a positive mental outlook goes a long way?
I think not. Faith without works is dead.
Most of you have incurred a sidelining injury, some even a debilitating illness. At the least, you have witnessed the same in the lives of those close to you. What did you do? What did they?
Are we all contingent on mobility?
When the familiar -- activity -- is not an option, then what?
Dr. Mueller, who came up with this therapy ten years ago, said according to the scintigraphic scans, all of the cancer took up the material -- "The Dotatoc docked again, very strongly" -- but we will not be able to gauge the long-term effectiveness for eight to twelve weeks. Thus, I'll get a CT scan around Thanksgiving or Christmas. But it's barely October!
I am concentrating on what is in my control and what is not -- and taking the appropriate action. What was in my control, and what my oncologist shouted at me about, was potassium. Normal is 4.0 or above. Three is dangerous. Mine was at 2.0 -- 2.1 after the post-op infusion -- which caused Dr. Isacoff to yell while on cell, "You. Could. Die. Get your level up." So when I could eat, after the two surgeries, I focused my three bites (the most I could imbibe) on potatoes and unsulfured dried fruits, almonds and orange juice. In three days I got it to 2.9. By the time I was in Switzerland, it was up to 3.3.
My platelet counts are out of my control. I'll talk more about them later. But I can avoid putting myself in dangerous physical situations, and thus minimize my risk.
About a month before I left for Basel and Round II of the treatment, I met a couple at Runners High who are actually from Basel! Martin and Fritsli work for Swiss International, the company formerly known as Swiss Air, and were so kind to Marcelo and me.
Martin, a bearish man with a wicked sense of humor and a huge heart, had a way of inserting various tenets into conversation that left me scrambling for my notebook so I could write them down.
The day I got out of the hospital, we went to Martin and Fritsli's garden -- a place of life, not just healing. It's about the size of a Belmont Shore house lot, maybe even larger. I lay in the swing on the cobalt-blue-and-white striped cushion, and rested until I couldn't bear the sun any longer.
Later, as we snacked on tea cookies, drinking water with home-grown mint leaves floating next to the ice, Martin let loose another zinger: "Be a bad host to the disease. Just act like a lousy host for your guest."
I can do that. Through the years, people have come to my house and been greeted with no snacks, and "Would you like water, or water?" Occasionally I was able to offer two kinds of water -- carbonated and non-carbonated.
Now, however, I am doing it differently. Water -- fizzy too -- three kinds of juice, vitamin water -- that fun non-Gatorade drink without a single nasty, corn syrupy ingredient, that you can even get at Costco! -- milk, rice milk, and a juicer in case guests want a different selection. And healthy snacks, from Trader Joe's and Wild Oats. But that's for mine and Connor's friends. This disease? I am learning to be a terrible hostess. And that's where the action comes in.
Speaking of juicers -- just for the record, just to be accountable, I will tell you what I will do until the CT scan, what I have done, what I am doing in order to at least maintain my physique.
Because right now is actually the easy part. After four weeks, and up to twelve -- again, right around Christmas -- my blood levels should plummet. They're especially worried about low platelets and resultant internal bleeding.
So I have been eating small meals every hour or so, whether I'm hungry or not. Instead of forgetting about nutrition and getting so famished I have to rush through Taco Bell, I am only giving myself nourishing food. Connor and I bought a juicer on sale at Bed, Bath and Beyond, and are actually using it.
Since we left on Sept. 15, I have not been sleeping. I don't mean poor quality; I'm averaging three and a half hours of slumber a night, and not consecutively. Through the years, countries have used sleep deprivation as a form of torture. I'm stumbling through my life, shaking.
And instead of fretting about it, I've exhausted every remedy I can think of: three different types of sleeping pills; homeopathic sleep aids (melatonin, valerian), I keep an apple next to the bed so I can munch throughout the night; I drink water whenever I can; I even consulted The Doctors Book of Home Remedies for advice. Finally, after nearly three weeks -- two in Switzerland, four days back in the LBC, I called my MediCal case worker and my general practitioner, requested a referral, and my mom e-mailed a friend of hers who went to a local sleep disorders clinic, and got the number.
OK Princess Obvious, you think, this is what any reasonable person would do.
It's just that I don't have a history of logical thinking, I have a history of cringing and fuss, of worrying myself into refusal to act on my own behalf. Besides, people who don't get enough sleep are operating on about half-level or worse. Those of you who are parents know how it is: unable to focus, depressed, confused, puffy face (yes, that affects my thinking), and a nearly nonexistent fuse.
I had to make a terrible decision the day of the therapy: whether to receive the full dose and run the risk of internal bleeding in the next eight to twelve weeks, or be safe (and some would say sensible), and take the offered half-dose.
Go big or stay home. Half the serum amount means half the effectiveness. I signed the proffered form, and took the entire dose.
Immediately, I experienced every side effect I had been warned about last time: "hot face" (flushing), acute nausea, weakness -- and I could taste the fluid, I could feel it all through my body. We got up to the hospital room, I collapsed on the bed. Marcelo asked, "How are you feeling?" and I just lay there and cried.
As soon as the accompanying four-hour drip of two amino acids was done, I received a blood transfusion.
Even then, I was my own advocate: I'm O negative, so RH positive blood would have been fatal. I carefully monitored that factor, and even asked that the donation be from a nonsmoker. (Ha ha, it was a good thought, but they don't ask that.) During the awful first night, I lay in bed and did feeble bicycle lifts with each leg, and got up every hour to march over and do baby pushups against the wall, just to remind myself I'm alive and because months ago, Thom at Runners High said pushups would keep my arms strong.
I had to rely on Marcelo for those two weeks in Basel. Now, I have had to ask for help in everything, from lifting my laundry basket to driving Connor down to Carbon Canyon for a cross-country meet. I think I've mentioned earlier, I enjoy asking for help about as much as I like admitting I'm wrong. But now is now. I surround myself with those I love and who love me back; I stay away from the soul-stealers.
And now that I have to get a weekly blood test, I have decided not to spend so much time at UCLA, since Connor's pal Mackenzie's mom, Stacey, is a pediatric oncology nurse at Long Beach Memorial. She can come over and stick me, so I won't have to travel so far for a dang needle in my porta-cath.
I walked as much and as often as I could in Basel. I will continue to walk, though somehow September's medical difficulties have caused me to defy Newton: An object in motion tends to stay in motion, he claimed. Rubbish. In this case, the body in motion simply staggers forward until the legs stop working and the body has to request a wheelchair.
But it causes me to take in fresh air, and keeps the blood circulating, neither of which is a bad thing. When the blood levels sink, and I'm in danger of internal bleeding because of my platelets, I promise to be vigilant and not participate in any Contact Vacuum-Cleaner events or stock car races.
Connor and Taylor, Marcelo and I did the Magic Mountain 5K on Sunday, fewer than four days after I returned from Switzerland. At least, three of us did. I ended up with my first DNF. Ever. Whether healthy or chemo'd, I have always finished a race, no matter how slow I was traveling or how lousy I felt.
This time, I neither walked nor ran, but waited for the three sweeties at the finish line, camera in hand. And later, when I wilted , Connor pushed me in the wheelchair.
There was a Hash during the time we were in Basel. I didn't run it, didn't walk it, but curled on the leather couch at India's house where the run ended. Everyone else ran through a castle, up and down massive flights of stairs, into and out of a forest … it sounded glorious. But I'm being sensible.
I will move these cursed muscles … but will walk before I run.
Fritsli and Martin took us to the Black Forest, about ten minutes from Basel. After about twenty minutes, we were nearly back to the car and I got inspired. "I'm going to run to that tree," I said, and lurched forward, shuffling my feet a bit faster. So I ran something like ten feet in Germany. Maybe 20.
Further along the lines of self-care, I put new tabs in my notebook, with titles such as "Food and Nutrition," so I will have easy access to which potassium-rich food I'm supposed to be eating, which additives contain MSG, and stuff like that.
I will. I am.
Forgive me for talking so much about myself this time. I just needed to check in with you. You are saving my life, remember. So I guess this is sort of a progress report.