Old Feelings Never Die

While attending my autobiography- memoirs writing class, I became a bit emotional. We sit in groups of four and read to each other from our latest work. This week I wrote about when I had Chondrosarcoma and long term hospitalization related to my internal hemipelvectomy. 

This is the basics of the story: I had been flat on my back for many weeks, when my younger sister came to visit. She massaged me and I began to feel considerably better. She helped me to sit up, something the nurses didn't do and the doctor had not ordered. She helped me to sit at the edge of the bed, and with progression, she helped me to stand up by the bed. Then, she helped me to walk, first four steps, then a few more, before I asked the doctor for permission to get out of bed. He gently reminded me that he had told me I would never walk again. I proceeded to get out of bed and show him that I could. The man had tears in his eyes as I walked toward him. 

It was that point in my reading to my classmates that I broke down. I held the paper over my face while I regained my composure and completed my story. 

We continued with the critiquing and questions. This being a very unusual foursome, it was pretty intense. The woman who sat to my left is permanently in an electric wheel chair. She has Multiple Sclerosis and cannot walk at all. In fact she has to be lifted from her bed with a hoist in order to be placed into her wheel chair. I couldn't look at her, for fear of seeing tears or sympathy, or even maybe impatience toward me. I thought I could feel intense emotion from her. I just had to breathe through her critique of my writing style. The lack of clarity for time period.

The young man sitting to my right is an avid skateboarder. Though, as far as I know, he has no medical conditions, he wrote about considerable violence and injury he has experienced because of his passion for skateboarding. Mostly he was confused and continued to ask deeper and deeper questions about my experience. It was clear I had left out a lot that I could add to my revision. It was challenging to answer his questions as my nose ran. Dammit!

The young man across from me was diagnosed with Leukemia seven years ago. Though in remission he continues to take the same chemo type drug I may soon be taking.  He knows what it is like to be isolated in a hospital bed. We've spoken about our experiences before this shared reading. He made it clear he understood. He never questioned or critiqued, but explained a few things to the others about having cancer, things I just didn't know how to say. 

Having cancer changes your viewpoint of the world and makes you wise in ways you never thought possible, and he is a good example of this.

It is odd how the body remembers the emotions that arose for me reading about something that happened over forty years ago.

Haunted Awakener

I find myself within each day swinging from blessed ignorance (my brain has turned itself off), to horror.

I puzzled over the dilemma of being controlled by my emotional instability and how I could live better with the situation.

There's always a choice, I say. Well, maybe not always, but an attempt must be made in order to try to get through things instead of falling through the cracks and losing it entirely. Been there done that too many times already. Psych meds help, but I also have to help myself. I think it's called Rational Emotive Therapy. It's quite helpful.

I had a friend once who had a series of bad dreams that haunted her daily life. She tried everything to stop the problem, from counseling to sleeping pills. But, it wasn't until she realized that the dreams bothered her most after indulging in one of her favorite activities. Or should I say, inactivity. She enjoyed watching horror movies.

Sometimes we don't put two and two together until long after we have failed the math test.

I realize my subconcious is wrangling with the Leukemia diagnosis, of course. My concious mind wants facts, facts, facts. I keep researching, learning what all the medical terminology definitions are, studying like a pre-med student for the final exams. I want satisfaction for my curiosity. I must know the adversary!

Still, the adversary is frightening. I can't turn my back on it. I research late in the evening after I have done all the rest of my daily business.

I sleep okay. It's just waking up to the underlying emotions that gets me down. One might say, "Stop researching". That would make me so anxious, I would be in worse emotional condition.

I have come to the conclusion (Drum Roll) that researching Leukemia information late at night is what's causing the emotional wake up periods.

DUH!

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Photo Art, "Haunted Dreamer" by me, Elizabeth Munroz

Un-Results

Waiting for the doctor to call to give me some results on my bone marrow biopsy. Waiting, waiting. Then the time comes to leave for San Francisco to see the mouth specialist to check the progress on my OLP.

Kats is driving and I'm checking my cellphone to see if a call had come through and I hadn't heard it. Then I notice the battery is dead! I call the clinic from Kats' cell to tell them to have the doctor call his phone. I explain the situation.

"So sorry Dr. Wong is not here today"

"But, he was supposed to call me and tell me some results today. He thought some might be in by now. Maybe they didn't come in and that's why he didn't call. Can  you check and see?"

On hold

"I don't see any results in your chart yet, but if you like, we can have Dr. Wu call you as soon as they come in. Dr. Wu is in the office today."

"Yes. Yes. That will work" and I provide the number for Kats' cell. I hang up and start to cry.

We are driving on a curvy mountainous road (Highway 17) in the midst of traffic. The cops are sitting on the edge of the road with their radar guns going. Too many people speed on this highway, crash their cars, and get killed, or kill others. Driving this road can be harrowing at certain times of the day. We are in that targeted time slot.

"Why are you crying?" Kats asked.

I dry my tears, blow my nose. "I don't know. It's silly really. It doesn't matter whether I get the results today or not. I don't have a computer with me to research what the results would mean."

"You can use my iPad.It's in the back seat" he says. But, we wouldn't have any internet access, so I say, "Yeah, Let's play Angry Birds!" and we laugh.

Why not find something silly to laugh about? Crying isn't going to change the situation except perhaps bring me down into misery. I can do that real well, if I let myself. Not necessary! Ain't doing that! I have a choice how I want to be. Perhaps some other time I wont have the control to stop it, but today, I can.

I'm feeling such a dunce. I run an online support group for chondrosarcoma patients. I know a lot about bone cancer, but nothing about Leukemias. It's like knowing a lot about riding a bicycle, but not a thing about shearing sheep. Riding a bike was important to me once. But now shearing sheep is a life or death matter! Okay, not that bad. But I can't leave a stone unturned. I like to know ALL the facts, even the ugly ones, even if they may never affect me. I'm like the kid who counts all the Cheerios in the box, lining them up on the table before he eats his breakfast. I want to check it all out.

In the case of the blood marrow results. There are certain numbers they are looking for attached to certain alphabets. I want the code. I want to break the code. And I wanted it yesterday! Damn! Why must I wait for my Cheerios?

Granted Dr. Wu may call me on Monday and let me know. He's not my doctor. He's the partner of my doctor. and that's okay by me. I already knew that Dr. Wong would be going out of town until the 17th. I just didn't realize he would be leaving on today... before he would call me. I misunderstood, I guess.

I am a horse at the gate impatiently awaiting the signal. I want to get my self on that fast track. I want to dig my hooves into the dirt and kick up the dust. I want to work up a sweat. I WANT TO KNOW EXACTLY WHAT I AM DEALING WITH!

I hate mysteries!

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First photo taken by my brother, Roger. Second photo taken by me while attending a fundraiser for Sarcoma.

Binge, Runaway Niece, Back to School

Some more thoughts on what I wrote yesterday:

I don't think Chloe's going to try out for American Idol. She already auditioned for America's Got Talent a few months back. She "nailed it" as her mom says. But, we shall see, as they are supposed to call back in April.  I just hope her disappointment over dance will be healed enough that she can truly put her energy into music.

Don't think Xavier is on Steve Job's diet. I don't think X eats fruit. I couldn't do without fruit! I did it for years and constantly ate junk food sweets and drank sodas out of desperation for what my body was missing.

My great niece, (my sister's eldest granddaughter), age 17, just "ran away" from home according to her. But, according to Jasmine, she got a lawyer and filed for independent minor status, and moved to Florida (from TX) to live with her girlfriend. She recently came out of the closet, and got rejected by her mom and my sis. I couldn't believe it. But, apparently there were more dynamics than that going on. My sis is drinking According to Jasmine, physical abuse of her mother by the boyfriend is another issue. I feel like I'm stuck in the awkward middle! Jasmine didn't un-friend me like she did her other family. I just worry that she might feel like she can "never go home". I want her to have a home here she can come home to, if necessary. And I hope she understands that.

I don't know what I'm going to do about a new doctor. I have the name of one that the ladies in my crochet group were discussing the other day. Checked her references. She got her medical degree in Mexico. Spent her residency at Mt Sinai Hospital Medical Center in Chicago, though. At the rate I'm going I need to move over to Stanford or San Francisco.

There's some logistics I need to balance in order to get to school and manage being a student in class. Getting there, for example. Do I drive myself and worry about a place to park? Or do I take the "handicap" Metro shuttle and pay six dollars round trip to have them drop me off at the disabled students department when it would take 50 cents worth of gas if I drive myself? Then wait for the student shuttle to haul me across campus? All the while never having the security that I'd be on time. (as I've experienced in the past with those two agencies). It would be stressful and I wouldn't be able to depend on my body to be healthy. What if I suddenly can't walk, or suddenly go into bad pain? I wish I could trust my body!

So, if I drive and find a decent place to park, I better be in good condition to walk to class. Should I take my rolling walker the first class just in case the class is full of students who've beaten me to it? I can't sit on the floor up against the wall the way I used to when a class is full. After the first few classes when the wimps drop out, then I wont have to worry about most of those issues.

Class will be on Monday afternoons. Usually that is my day of rest. After a weekend with Kats, I  need that time to myself before facing the rest of the week. I will have to find a way to rest in the evening, I guess.

Tuesdays the drive to Stanford for binge group and counseling. Usually a Wednesday or Friday for the trip to UCSF. Not every week but at least two or three times a month. Not to mention local doctor appointments.

This month I finally have a dental appointment at UCSF with someone who can actually do some serious work with my teeth now that my mouth is "healed" up, sort of. So it will be interesting to see how I handle that! Right now I have a long term toothache, needs a root canal, I think. I dread if it needs to be pulled, as I won't have a place to hook dentures if that's the case. I will need to put the charges on my credit card. That is a big worry for me. Really big. I can only go so long without paying utilities before they will be shut off. I'm hoping that I can pay about 500 a month based upon the amount of work that has to be done. If I don't spend any money for anything at all except bare necessity. That way it wouldn't be too bad doing without for a while.

Running the CS group, upkeeping my 3+ blogs. My cats haven't written anything for about two weeks now. I think I will have to sacrifice facebook! Yup... there goes my social life! I wish I had some of my old hypomanic energy to sustain me.

I don't worry about writing for the class. I have confidence in my writing. I can do that. It's just having the opportunity to squeeze writing into my life that stresses me. I really want to take the class so I have daily inspiration to be more serious about my writing. I'm actually working on my autobiography/memoirs to be published. I want to be around other writers.

Then the thing that stresses me out the most is leaving my 4 kits at home alone all that time I will be gone. I know they would manage, but cats who are left alone bond to each other and to hell with the person who feeds them. I want to be able to pet them, to hold them, to hear them purring in my ear. I want them to sleep with me and I want them to be happy, healthy kitties. If I was a bit more into magical thinking I would swear that little miss Buffy (da Bampire Flayer) is my sweet old Keli, reincarnated. She even has some of the same markings as Keli did, and she has a lot of the personality traits Keli had when she was little. She "talks". None of my others cats do that.

I've got to call Meals on Wheels tomorrow and get deliveries started. Since I qualify, I might as well save myself from having to buy groceries. They will send a bill at the end of the month but will accept a donation of any amount. It will be interesting to see how their diet might, or might not fit into my new "regime", what ever that might be. I had to stop in the past because the food burned my mouth sores and caused more problems with my tummy. I start the Stanford Binge group next Tuesday at 6pm finish at 8, arrive home at 10 pm. I'm gonna want to EAT when I get home. Better that I have a healthy meal in the freezer when I get there!

Binge and Fire Doctor

Chloe has gained fifteen pounds since her surgery last August. That discourages her a little bit. But what's really disappointing for her is her ankle still is not strong enough for her to attend dance classes without major suffering and swelling. She is beginning to realize that because she has the multiple bone tumors, she may never be able to perform like the other girls. It breaks my heart. I just wish she would put all her efforts into voice and instrument. She is so good at those, especially voice.

The binge eating study at Stanford accepted me as I qualify as a binge eater. (Well, Duh!). I start next Tuesday for 12 weeks. They have decided to put me in with the ones who are "emotional eaters". 

 

I told them I actually have been listing what I'm eating and lost a few pounds. But, I'm eating what I want (and gained back some). I asked them if it was against the study rules. They said no. I really feel weird about this! I had a lot of stress with Kats here last weekend. Nothing unusual, it's just normal for me when inter-relating with another person, including Monday when Xavier came to visit. 

 

Kats supports me regardless of what I eat or don't eat, and never says a word about my ordering dessert (unless he's short of cash). Xavier, on the other hand, has become a vegetarian (except fish) and lectures me about what's good to eat and what's not. Though, he doesn't condemn. I have to laugh because he believes the best source of protein is nuts and when I tell him they are high fat, he rationalizes by saying they are not "transfat". We ate two huge salads that day. I love salad (now that my mouth is healed enough to eat them) but I still want my mac and cheese and my bread, and muffins, and.... 

It's gonna be interesting to see how all this works.

I might be crazy to do this, but I registered for college, and will be taking a creative writing class this semester. My shrink heartily approves and I'm having panic attacks over it, realizing maybe I can only do so much multi-tasking. But, I really want this more than anything!

I fired my new doctor (Taylor) today. He has ordered tests every time I've seen him. He has repeatedly said he wanted me to do a cardiac stress test. I told him I cannot do the fast walking required due to my pelvis AND I told him that the last time I had the lie down kind where they inject you with a medicine, I had a horrible experience, SEVERE pain and blood pressure that shot up through the roof and I would NOT submit myself to such a test again. Horrifying! 

 

Each appointment he would suggest it again and each time I explained I was NOT going to do it. The other day I went to see him for follow up on blood tests, and he tried again. This time he said it was not the same as before, that I only needed to lie on a table and it would be like a scan, called Lexiscan. I asked what medicine is injected. He said "just an isotope". I asked what it's called. He said Lexiscan. He even took me into the room where he has his own private scanner. It looked just like a cat scanner. So, I said, okay. Scan was scheduled for Friday. 

 

Last night I looked up Lexiscan. Guess what! it is the same medicine that I had the bad reaction from. The doctor is either a liar or he is just plain stoopid! I was so angry! When I made the appointment for the scan I was given a paper and signed it saying if I had to cancel the scan I had to notify them within 48 hours otherwise I would be charged 130 dollars. So, I'm looking at the clock and calendar in the middle of the night and realizing I better get with it. I wrote a letter, posted it on the blog for evidence, copied to facebook and then put it in an envelope and drove over to his office. 

 

Oh... forgot to mention that I called his office and there is no way you can leave a message except for the doctor on call. I did leave the message saying I found out about the medicine and I was cancelling my appt and apologizing to the doctor on call for bothering him/her. However, I thought i better play it safe and I took the letter to the office, found the mail slot in the door and put it through. It caught on the leg of a chair. So, when I woke up in the morning (how in the world did I sleep?) I called the office and got one idiot after another who didn't know what I was talking about.

 

Finally... finally! I talk with the office manager who tells me she wont charge me for breaking the appointment and apologizes profusely on behalf of the doctor (sounds like she is used to this). By the time I explained how I didn't trust him, I realized I was not going back to him and told her I wanted copies of my records. 

 

"We send your records to your next doctor". Nope, I tell her, I get the records. "We have to charge you for that" Fine I tell her. I keep my own records. If you knew my history you would understand why. (BTW she's got my records right in front of her) She tries to talk me into seeing one of their other doctors, but finally says she will mail me my records. 

I'm too annoyed to write any more. I have some ice cream that deserves my full attention!