Make yourself at home. Put your feet up. Grab your favorite beverage and prepare to enjoy the reads.



Slow but Steady Wins the Race

Awoke again with no pain, on just five hours sleep. I just can't fall asleep easily right now. I don't any racing thoughts or things on my mind like some people suggest is what happens when one has insomnia. My body gets comfortable and I just lay there semi-dosing waiting to drop off. I would have slept in a little to make up for it, but had NPO blood work to be drawn, so headed over to my regular doctor. She is an Oncologist and Internal Medicine specialist. So, whether or not I have active disease she takes care of most of my needs. 

Her partner was there today and came out to say hello during the blood draw. (this really is small-town medical practice). So, I asked if he ever gets Sarcoma patients, to which he answered, yes. He presently has three. So I told him about Team Sarcoma and my plans of getting myself stronger so that I can participate. Then, told him that I wanted to find ways to get Sarcoma Awareness out there in the community. He immediately ticked off a number of suggestions on his fingertips, and was very happy to hear more. I couldn't write down his ideas. Darned blood draws anyways! But, he suggested I send an email outlining the whole program. I would like to find someone in my community who can let their fingers do the walking around here, and get me some opportunities to connect with people for Sarcoma Awareness!

There just doesn't seem to be enough time in the day to take care of myself, the chondrosarcoma group and trying to set up a community network. But, I keep in my mind some words of wisdom I once learned: "Slow but steady wins the race." (said the Tortoise to the Hare.)

After returning home, I had to lie down for a while. This happens sporadically for me. I just know... that's it... time to lie down. Once I did that, I realized my right foot was ice cold. This happens and I don't know why. The lack of pelvic floor muscles? Pressure upon veins? I don't know. If I ignore it the whole leg becomes cold, and that gets painful. I don't like to take pain drugs, if I can handle it without them. So I keep reclined, warm my foot with the heating pad, and when it feels better, get up.

After I felt better I headed off to the local outdoor shopping mall and walked the sidewalk, which goes from the end of Target to beyond the grocery store with a number of shops in between. I began in the middle so I could walk one direction and come back. If too tired, I would get in car and go home. But, I kept on going to the end and returned. In the meantime, I made one walk through the whole perimeter of Target. I took a cart to "lean on" as that has been what I do when I use my walker, substitute cart for walker. I was getting tired (actually achy) enough that it helped to have the cart to stabilize me. I didn't shop, though it was tempting. I was just there to do my walk, with only one poky stop in the socks department. I did notice that when I slowed down or stopped that pain hit my Sacroiliac joint. Now I realize why shopping is such a drag for me. Well, other reasons, too. I just hate it when kids who have lost their parents have a basketball and stand at each end of the aisle hurling it back and forth like a missile. Then there are little kids in a cart who are leaning out screaming to reach Mama, who has her back turned. 

I usually like to shop after hours!

The absolute most amazing thing happened today!!! I had been thinking about wearing a T-shirt while I am out walking that has something about Sarcoma on it, so maybe it would trigger someone to ask me, "What's sarcoma?"

I tossed around some slogans:

Tame Sarcoma with Team Sarcoma What's Sarcoma? Just ask me.

But, finally I settled on: "Got Sarcoma?"

You know, like that ad that says, "Got Milk?" My Japanese sweetheart has a bumper sticker that says, "Got sushi?"

I figured wearing a shirt that says "Got Sarcoma?" At least those who have had it or know someone who has will have a comment to make, and therefore, I will have a lead to help create Sarcoma Awareness. Who knows maybe Oprah will see me and donate big time. Because, after all her House Designer guy, Nate Berkus did a re-design for Ty Bassett who had been amputated due to synovial cell sarcoma.

Hey Oprah, don't you wish sarcoma patients had a cure? You can make it happen!

Okay, nevermind, let's get back to the awesome coincidence and the T-shirt story. I looked in the yellow pages in the hopes of finding a T-shirt place. Lo and behold, there was one right here in Watsonville. So, I called, and the owner answered. Conversation went like this:

Hi, this is Doug.
Hi. I am wondering if I can get a shirt with a logo on it.

Do you mean one shirt?


We don't do one shirt orders. We make many at one time. Like for charities and organizations and so on.

Oh, darn. I was hopin'..

Well, it would be very expensive for just one.

I just want one. If it isn't too expensive. It is sort of for charity... for cancer.

Well, what would you want imprinted.

You know the slogan: "Got Milk?" I want a slogan that says, "Got Sarcoma?" because I....

Sarcoma? Why Sarcoma? His voice changed at this, and I suspected he knew the word that most don't.

Well, I had it and survived, and now I am getting ready to do a fund raising event and...
My dog's got sarcoma!!! She was just diagnosed 3 weeks ago!
Now I understood the unmistakable catch in his voice and the conversation was no longer about T-shirts.

We spoke a longer about the Sarcoma patient support groups online, and even the fact that there is one for dogs with cancers, and that dogs and cats are, or have been, members of my Chondrosarcoma group. By the time we got off the phone I would like to think that Doug has a bit of hope for a little while longer for his dog. I will stay in touch with him, even though he told me it would be easier to go to kinkos and get an iron on transfer made. Thanks Doug!!

You may think I am crazy for allowing pets to be members of my support group. Or to acknowledge them as Sarcoma Patients. I can't help myself. I was once told that the reason my surgeon was able to perform my internal hemipelvectomy on me (back in 1967) was because dogs had been used to perfect the surgery. So, in a roundabout way, I owe my life to a dog. So, why wouldn't I let them (or their people) join my group?

I don't think they experiment on dogs anymore for sarcoma. But, if they do, then they might have a cure sooner than humans will.
So, needless to say, today's walk is ALSO, dedicated to five year old Tina, the dog who has sarcoma in her throat, has had surgery, and presently is undergoing chemotherapy. May she have many more healthy years.

Because I still didn't find my pedometer, I just timed it. I was able to walk for 50 minutes


Hypnogogic Electronic Walking

They're called Hypnogogic Hallucinations. I have had them on and off for many years. But not for the last two. So, I drowsed off to sleep with that sense of muscular tension like a sour violin string being plucked. I just wanted the sensations to disappear. While waiting for my seizure med to take effect, I fell deep asleep. I don't know how long I slept when, suddenly, I was aware
of someone in the room. I opened my eyes and there was what resembled that guy in the movie, "Powder". About a foot from my face staring at me, my automatic reaction was to shout, HEY!!! This has always worked in the past to get rid of the hallucinatory beings. (or wake me up as the case may be.) But, this apparition only stepped back, and I had to yell out another, HEY!!! Needless to say, I thought I would have awakened my brother, but he must have been out like a log. Four hours later, he woke me to ask if I was ready to go with him to the Electronics Flea Market. I told him, not possible, I would come later.

Kats picked me up and got me to De Anza by 6:30 AM. It was quite cold! I put on sweatshirt. two jackets and knitted hat. Soon, I was waiting on customers. I have worked with my brother like this since about 1979, when we both lived in the Los Angeles area. That's part of how I got to be such a Geek, being exposed to coaxial wires, adapters, antenna splitters and now a plethora of new stuff. I still enjoy hanging around with the big boys. Though not able to do the things I once did gets more frustrating, like unloading the truck, setting up the tarps, lifting crates of merchandise, putting up tables, and so on. Roger's space was about 30 ft by 20 ft and I found myself pacing when not waiting on customers. It is so painful for me to just stand in one place for any length of time, I just have to keep moving, lie down or sit down. So, I put my pedometer on, and decided to see what happened. Several times I left the site and went for walks throughout the swap meet trying to guess what all the unimaginable ham radio devices were for. I still have so much to learn.

This time I was wearing my Lucky Pinks, so walking was stable and able, up and down all the aisles at a brisk walk. It was fun to just look and keep walking without any difficulty except having no money to splurge on some old Syvania vacuum radio tube, like the ones my mother produced during the war. Eventually, I thought it would only be fair to return to Roger and get back to the business at hand.

We were aware of the possibility of light rain showers, but that is not what they used to call what happened next when I lived in the Mid-West. (tornado watch) We, of course, were ready for the rain, as Roger had put up his rain tarps before he set up the tables. A little rain occurred at that time and died off. Upon returning to Roger, the rain had returned with a passion. I kept going around with a long stick and pushing upward on the tarps to get rid of the run-off before the whole thing collapsed on us all. In the meantime, some customers were getting dowsed before I could get to them. Everyone crowded under our tarps anyways as not too many other sellers had protection from the weather.

All of a sudden the wind lifted up the frame of the tarps. I grabbed one of the poles and asked for help from the man nearest me. Then, a few others followed suit. The wind was so intense, many took their chances running back to their cars. A few regular customers (for years) stayed behind to help us. I felt so bad that I could not grab the goods, load them in the cases and haul them into the truck as I once did, and Roger had to rely on customers to help. All I could do was dry things off with a towel.

Going home driving through more rain was challenging now that my body had time to complain. Kats and I went to the spa and did the pool and jacuzzi, to release the tightness in the muscles.

During the four hours that I was with Roger, the pedometer registered 4114 steps.


Not Taking a Walk

Too many breakthrough seizures this morning. Probably more likely due to the lack of appropriate sleep, not the new walking program. If this continues throughout the day, I will need to call the Neurologist and ask if I need to up my dose of Lamictal.

Have been on the phone most of the day, one call was with the office of a researcher who had requested to communicate with me. But, it is Friday. His Assistant didn't say he was away, just he would call me back next week. I asked her to send me one of his research papers, which she did. I printed it out and have taken it with me to read later. I will stay overnight tonight in Sunnyvale where I have met up with my brother, Roger .

I had hoped to get there before him and take my walk while waiting for him to show up, as he drove up here from Phoenix, however it turned out that he was ahead of schedule and I was late. We had dinner out, then back to the hotel, where I am now. It will be a very early wake up as I will be hanging out with him.

I won't boo-hoo about not walking today. Getting control of the breakthrough seizure activity was more important.

So, no walk. Zero steps today.


Rio Del Mar Beach, Aptos California

Had trouble falling asleep last night. Many cramps in legs. Hmm!

Rainy night. Strong windy day.

I wasn't able to pull myself together enough to go out early to walk. Bones too creaky. Too many emails to handle. Cat needed cuddling. Excuses!

Then... Earthquake!

Yup. But, just a little one. Epicenter, if you can call it that a little off shore, from Watsonville, in the Monterey Bay. Really, it was very minor and one of 13 in the area today. Thank heavens for those short shifts! I live only about 10 miles from the previous epicenter of the Loma Prieta Quake (1989).

I finally put on some sweats, (still cold and windy out) and got in the car to drive over to Aptos beach to walk. I parked at the beginning of the half a billion dollar homes, well okay, maybe they are only quarter billion. Once I got my pedometer on, and started walking I had an "oh, no" moment. I had forgotten to change shoes!! I left my Lucky Pink's at home. Darn it! Oh well, slip-ons just had to do.

So, this sidewalk was slanted too. It is across the street from the crazy rich homes. Crazy, because you would have to be crazy to live there. A huge cliff that produces mudslides every winter faces the backs of those homes. The sand and ocean is literally is at the front doors. That is, separated from the sand my only a street and the walk. Well, at least most of them have their first floor as the garage only. I have seen some pretty bad damage on that street. So, I guess it is okay to be crazy if one wants to pay big flood/mudslide insurance (act of God insurance?) and pay for rebuilding when the mud oozes through your kitchen into the living room and right out the balcony and plops down onto the front driveway where the ocean washes the mud away. Still, I wouldn't mind living there just for the incredible view, and the sound of the surf. On the other hand, it is the one and only street that leads to the state park beach. In the summer it is crowded with tourists. The rest of the year it's either surfers or whales washing up on shore. I have a recording of ocean sounds, I think will satisfy me.

And you thought I was going to write about how nice it was by the sea... the seagulls, the sunshine, the waves, the breezes, the warm sand, the beachcombers. Yes, it is all that, and more! It was hard to just enjoy the beauty when my shins were burning, though. My slip-on shoes were not meant to be supportive walkers! I will NOT forget my Lucky Pinks tomorrow. You can bet on it! I want to be in good enough shape for my trip to Vermont that I walk along the shores of Lake Champlain and just hang my mouth open in wonder and joy, forgetting to take pictures.

I didn't care for the inclined, not flat, sidewalk. So I crossed the street to walk along the front of the nice homes. Many people sitting out on their verandas or patios nodded or said hello. Nice people! I wonder if they do that during tourist season, too. I remember how sociable everyone was on New Year's Eve. The whole street was it's own double party. The tourists below on the sand with their bonfires giving toasts to the hosts. The householders out on their balconies in their dress clothes lifting their glasses to their guests. It was a surreal and happy new year where everyone seemed truly happy. What year was that? I forget. But, it was so kewl!

I was determined that I would at least walk as far as the end of the homes, where the public restrooms begin. I did have to stop a couple of times to just stand there and breathe. Coming back, I decided I could handle the sidewalk as the slant evened out my leg length discrepancy. I managed quite well with that, except for the areas where the sand had blown across the pavement. Loose sand is not easy to walk on, when you are as out of practice as I am. Soon, I had lost my momentum, and the pain slowed me down considerably. Other walkers were passing me by, even an old lady with a dog! The jogger, (Bless him!) ran by me, back and forth, so many times, it was Déjà Vu, all over again. Along the sidewalk is a sort of metal bar fence. (something to hang onto when the wind is blowing hard, or the waves are rushing by) I stopped four times, and pushed my spine up against them to help relieve the pain. The burning shins were gone by this time. It was my rib cage and shoulders that were complaining. Next time, I will probably need to take something for pain before I go out, just to keep it to a dull roar. It's very distracting. At least when I am home, in the car, visiting someone's home, I can squirm or change position, or even lie down if need be. But, I had to continue walking. My car was not going to come pick me up. Hey! that's a good idea. You know. They have those cars now that will park for you, and the ones that will watch out for drivers sneaking up on your blind side. They need to invent one that will unpark itself and drive up to whereever you are. That would be great for when you come out of the grocery store and can't remember where in the world you parked your car, too.

Now, see! Who's crazy now. This crazy lady who calls the beach home owners crazy! That's who.

I just need to keep on working on this until my body is as ambitious as my mind wants it to be. It's not like I can't do it... I can.

That last 99 steps I counted myself, just to put my mind off the invisible Samurai jabbing me along with his ancient sword. It was with a sigh of relief, as well as pride when I got in the car. I actually had broken a sweat! Though my body was throbbing and complaining even after I sat down, I was happy to see the numbers on the pedometer.

Oh yeah, forgot to mention... the pedometer says I took 3599 steps!!

My reliable, old, 1987 Dodge tells me that I went a mile. Aren't there only supposed to be 2850 steps in a mile?


These Shoes Were Made for Walking


Didn't sleep well last night, and I received an early phone call. It was Amy, who is the dog walker for Karen, the neighbor who shares her cat, Cinnamon with me. I had previously asked if I could walk with Amy when she takes Karen's dogs out. So, I went her. I was a little disappointed though, as Amy didn't want to take them but more than a block away. The Dachshund was raring to go, and keep on going, but the "redbone" hound that Karen adopted from Katrina (the hurricane/flood) was much slower. Mahree apparently is old, and has arthritis. At one point she literally stood still. I could tell how she was feeling as my arthritis does that to me, too. Sometimes just taking another step seems impossible. I wonder if they have anti-inflammatories for dogs.

Since I didn't walk very far, I won't "count it" as a walk.

Later, when Liz came home, we went walking, ( meandering). But we did 3,282 steps by going in the other direction than before. We stopped halfway and sat on a bench that one of her friends has in her front yard and chatted with her. She gave us cuttings of one of the flowers in her yard that I hope to plant.

I am proud of myself. It seems so incredible to me. Over 3,000 steps and no real negative after effects.

I spent the rest of the day on the computer trying to arrange for a flight so that Xavier, my son, and I can go to Texas for my parents Memorial. They both died within the last 17 months.

Since I could not find my old walking shoes, (not under the bed, not in the closet. Did I toss them?) this evening I went to Ross discount store and bought me a pair of Skechers for only $17. As my mother would say, if she were here, "they're ugly as sin". But they are Pink! I love them! They will be comfortable for this summer as they are sandals.

Getting the shoes was one more goal acheived....


First Walk

Awoke with pain in the belly, which has been quelled for a few months. Last time I had it bad enough to go to the hospital, it turned out to be passage of a gallstone. I don't have a gallbladder, but I still produce them. The gall duct is quite enlarged so I guess it makes sense that it substitutes nicely for a gallbladder. Go figure.

So, my first nagging thought was, "What will I do in Vermont, surrounded by others who want to get on with the day if I have a bad episode?" Then, one thought jumped to another. I am annoyed with myself that I am having this much anxiety. But, I am sure I will work it out. I had a cup of green tea with ginger and half a lemon, and later was able to have some toast.

Later, I asked my neighbor, Liz Valencia, (picture at right) and asked if she wanted to walk with me. She had a hip replacement last year and walked quite a bit afterwards. She gladly went with me. I recall that she had a nephew who died of Sarcoma a couple of years ago. But, we didn't talk about it, just noticed the flowers and plants along the sidewalk. We walked around the corner, down the street and back. I wanted to go further, but I have been warned to take it slow, a little more each day. Liz knows about the blog and gave me permission to use her name and image.

I wore the pedometer and it counted 1510 steps.

Later, I was surprised to have sacral pain, not leg pain as I had expected. No need to take meds. Just rested a while.