Doctor Sherlock and the Mystery Solved

Brr! It's quite cold and windy for this time of year, and freezing at night. There is even a wind chill factor! Would you believe it, in mid-coastal California? I guess I shouldn't complain, though. Other parts of the country are still having much more serious weather than here. I've lived in New York state and Indiana. I know what that is like.

I went to see the Neurologist to find out what he would say about the recent occurrence of breakthrough seizures. Lucky for me that I carry little plastic bags of my prescriptions with me. They resemble zip-loc bags, but are smaller and thicker. I get them at the pharmacy, and put my drug labels on them, so I don't have to carry a lot of bottles in my purse. Dr. G (stands for Gorgeous!) went over them all, looking for a correlation between them and the Lamictal which I take for the seizures. He determined it doesn't seem likely that there is an interaction between my meds.

I like it when a physician is willing to play Sherlock Holmes, and try to figure out the mystery of why something is going on with a patient. He could have just played the guessing game and said, "Let's try something else and see if that helps." I can understand why a physician might do that. Sometimes it would be too time consuming. Otherwise, if one has a large practice, perhaps the easier way to challenge a problem on their best guess based upon what they might know. As for me, Dr. Sherlock Gorgeous is the most fascinating challenge, as I really have to think, and respond carefully to the questions he asks. It's really hard to describe the seizures when I am not exactly aware of all that was going on! Some things that I take for granted, he was able to pluck out of my communications, and deduce the probable cause of this latest development.

As soon as Dr. G put two and two together, he pointed out that my insomnia might be the culprit. It clicked with me right away and was so simple! Among other things I have had a life-long pattern of sleep disorder. I wont go into all the boring details. Seizure prone people apparently need their beauty rest! We discussed it and if I can just get myself back into a good sleep pattern, then I wont really need to take any sleep aids, which is my preference. In the meantime, I have a prescription for break through seizures.

Finally! A chance to go for my walk! Since I was nowhere near home, traffic was heavy, and the wind still so cold, I opted for walking in the mall. It is nice and flat in there. I spent nearly an hour walking. Though, I did dawdle a little bit, and at one point I did break down and buy something. I wouldn't mind walking in the mall regularly, but I would have to leave my purse in the car!

A Day of Revelation - Personal Journal

"When the Cat Lady sleeps well and awakens refreshed it is because she sleeps with a cat sitting on her chest, purring in her face! The cat is her instant alarm with whiskers ticking her nose." You may quote me on that.

The preacher man at the holiday party was slimmer than the last time I saw him. I didn't think too much of it when he told those interested that he had done it the "easy" way. All he did was use a free online site where he recorded his daily intake of food. After the holidays I suddenly realized I had quickly, the easy way, gained too many pounds from over-grazing the highly laden table for several days. I was in shock. Had I really nibbled that many calories? How could I be so blind as to not notice. After all, I had gotten sick from the overindulgences. That's more than a subtle hint. But in my mindlessness, I didn't notice until too late.

Yet, the scale does not lie. I called to learn what the site was my Reverend Grandson had referred to. I signed up and have to agree, it is the easy way. There's no pressure, no insistent articles. No ridiculous ads. It is straightforward and useful. As long as I record my daily intake I naturally begin to limit portions and think twice about having seconds. I've also incorporated some exercise. (It's about time!) And spent more time contemplating and meditating.

The results have been mixed. I've lost ten pounds, but have gained back two. There is a place on the site where one can record one's exercise. It provides you with the calories burned for those exercises. Can you believe? You burn calories just sleeping! Hmm. I wonder if it is more if there's a cat on your chest. After all, one must work harder to breathe. RIght?

I went for a walk down by the ocean this morning realizing that I was in a low mood, and discouraged that I am not putting my all into this. The dichotomy is that I am doing too much. The intentions of my mind are stronger than my body. It betrays me! My body has it's weaknesses and cannot live up to the pressure I put on it to perform. For example: I had breakthrough seizures (Simple Partial) after my walk and it left me "out of sorts" for most of the afternoon. I struggle with clarity afterwards, feel unfocused and somewhat fuzzy. I don't like it. It's annoying. Will be seeing doctor tomorrow afternoon and I intend to discuss this with him. I am pretty sure he will encourage me to follow through on the walking program, but I hope there is some method or treatment to prevent the same results I had today.

Upon reflection I think about how, when I am well rested, that I don't have this problem. After a sleepless night, the seizures are more likely to occur. Perhaps I need more cats to sleep with me. Eh? I also have some books on gentle exercise. I have the feeling I need to pull them out from the shelves and re-read them to refresh my resolve.

Bed Partners

He snores beside me
that butterball I love,
waking me from dead sleep.

My black cat, Ninja,
with big claws
and buck tooth yawn,

I jiggle him.
He looks at me
those golden eyes.

Annoyed, he rolls
on his side
and begins to snore
again.

Quiet Steady Rain

Branches dance to orchestration
chimes caressed by the wind
water dripping between spaces
so many pebbles pounding the roof
gutters rush to find a way to meet with wet soil

Stretching antenna, snails head for high ground
water dive bombing around them

Trailing ants gone
safely stowed in the attic,
or deeply burrowed beneath soil.
Can they manage the onslaught
of rivulets flooding
their collapsed corridors?

Opened window listening
Sonata plays full volume.

Water splayed upon window sill
Cats shake their paws
watch with piercing eyes
to see where each drop
ends it's journey

No resounding thunder, no lightning strikes
just the windows mumbling to the whispering wind
the conversation during intermission lulls me to sleep.

Elizabeth Munroz

January 2010

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?

Yes.

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

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.