TOVA

Therapeutic Options of VA. I'll be teaching the class on Friday. Teaching with supervision/assistance. It'll kinda be like my final exam. TOVA is a very good philosophy/program for our field, mental retardation. Michael Partie is the creator and he draws from other programs. He does not seek to take credit. He makes sense. He spent years investigating abuse claims. The website is www.therops.com. Like all things I do, I'm not too good at the beginning - quite nervous, very easily frazzled, tend to blank out, freeze. But, I get better. And better, and better. And eventually I'm quite good, even respectable. Friday will be a not so good, an easily frazzled time, a time when I will blank out in front of the class and look like a scared puppy. No matter. It's my process. The good news is that Jim Hall will be there with me to fill in gaps, to save me, to clarify, so the people in the training will STILL get the necessary, very good, info that the class has for them. It's the next class for which your prayers are especially needed: the first class I teach completely on my own. That will be the one where we need your prayers to ensure that the class is not merely a growing experience for me but also, a positive learning experience for the attendants. I dread the thought of wasting their time, of not helping in this limited time we're given. This is such logical, humane, common sense, decent, ethical "stuff." It NEEDS to be out there.

Switching gears, do do do do, and now...for a cancer update... My dad started his chemo pills last night and has suffered NO nausea so far! Yay!

Be well all.

Thank you God.

Apples Peaches Pumpkin Pie

Well, not quite. But you see I'm feelin' kinda "good stuff," kinda "simple life," and that's the phrase that came to mind.

Saturday Cam, Erica, Seth and I went to Centerfest which is little Bedford's annual street festival. Seth had gotten me all pysched up for Carnie food (as he called it) so I had created in my head a big event out of eating funnel cake and kettle corn and then it turned out he didn't feel so good so I had to live out my dream alone. By that point, needless to say, I had realized how very empty my dream was.

Cam and I stood back and watched as Seth and Erica said hi to half the crowd. What sociable "in" people they are... Hmmm, guess that's nothing new. Cam and I early on developed a certain pride in our socially awkward development. Or perhaps it was later on and I've simply made myself forget.

Regardless, I love time when the four of us hang out together; it's infrequent and good when it happens.

But last night, which is where the title really comes from, we made food. Yes indeedy. Real food. First we made apple pie. Seth went into town and got missing ingredients and I washed the peelers. We were starving and Seth thawed and fried some Morning Star Black Bean burgers up and I had mine on an Everything bagel with guacomole and salsa and it was mmm mmm good. Then we made hummus. Actually, Seth crashed so he observed and kept company and took mental notes while I measured into the food processor. Then we were going to make applesauce but we were both drained and went to bed right away.

Unfortunately I had another of my increasingly frequent bad dreams. This was a torture dream. Those come up now and again. Never the same one, always different scenarios. Nearly always it is a group who has captured another group. The dynamics go beyond pure torture and into group oppression, domination, torture, and political propoganda. I'm usually an individual in the captured group, trying to figure out how to best escape and how best to manipulate my captors and avoid pain until I might escape; I also try to help others avoid pain as well. There was also a bus in last nights, and a car, I think the vehicles switched on me. Washed out roads. Roads under construction. Erica was with me at one point and we were asking a group of homeless kid construction workers whether the road ahead was passable - "Hay paso?" and we had to yell it again because they were laughing and not paying much attention to us, kind of making fun of us, knowing we were at their mercy. And their answer was "Un MONTON!" and Erica and I took off but we weren't sure they hadn't sent us into something that would get us stuck. And mind you, we had no time to lose, we were being pursued. And now I remember that Judy Garland was there. She was older but had had tons of cosmetic surgery so that she was thin and petite and was an insanely rich blond older lady. She could be hired to make appearances at parties and she showed up at a simple dinner party being hosted by someone in the USAID D.C. crowd and she pretty much just showed her photo albums around and signed people's books. Apparently she'd written a lot of horrible books, books that someone else wrote for her but her name on the book as a collaborator made the books sell. And then later in the dream somehow it came out that I found out that she was a murderer. A serial murderer. Mostly just of inconvenient people who'd run across her path so she'd killed them for convenience sake. And then of course she was after me once she found out I'd found out and so more running for my life ocurred.

Ahhh well, I must go now, it's late. But uhhh, on a more pleasant note, I can't wait to taste the food tonight that we made yesterday!

Cheers.

Money Money Money, MUNAE

Whoa, interesting fact. The prescription for one round of Monday through Friday treatments costs $3,200. Boom shackalacka. Completely outside my frame of reference. Again, no idea had I. And the name of the drug is "Temadore." Not sure of the spelling yet. I suppose I'll find out on Google in just a second. The insurance will pay most of the cost, leaving only, ahem, $800 for my parents to pay out-of-pocket each week. Boom.

A Plan

Monday my dad will begin chemotherapy. He'll take 4 pills daily Monday through Friday, then two weeks of recuperation, then pills Monday through Friday, then two weeks of recuperation, then Monday through Friday, and so on, indefinitely. Things that would alter this: (1) if the pills don't affect the tumor/cancer, the treatment will be stopped. (2) if he's responding really well, they can give his body longer breaks in between. The doctor says he will be pretty well, pretty good feeling during the two weeks. I have my doubts. Side effects to expect during the Monday through Friday bouts, and a few days beyond, are nausea (not being able to eat much besides broth and crackers) and being more prone to infection, so cuts, bruises, colds, etc. will be more dangerous. It seems to me that the white blood cell count would remain down, not just during the week-long treatments. I may be confused on this point.

The longest that anyone with metastatic melanoma under care of this doctor has lived since diagnosis and removal of the brain tumor and with treatment was four and a half years. But the doctor made sure to say that the number of people who had lived past two and a half was only around 6 and he'd been practicing for 25 years. If untreated with chemo, the average survival time of a patient who had a brain tumor (m.m. of course) excised was 6 months. The last two months for anyone, regardless of treatment, is pretty much all in bed, dependent on others, lots of pain management, etc. Unpleasant stuff.

I can't remember the name of the pill my dad will be taking, but he picks it up at CVS and self administers. Doesn't that seem strange? Takes away some of the mystery, which I suppose has both positives and negatives.

My dad had no hesitation in making the decision to begin. The doctor offered time to consider, get a second opinion, etc. Boom. Sign me up. was my dad's instant reply. Afterwards, alone in the carride home, my brother offered that he was turning over responsibility. I offered that he was not wanting to deal with it, didn't want to think about it anymore, just tell me what to do, let's do it. I guess we're saying similar things. And with the understanding that medicine offers no cure, I can understand not wanting to bother seeking out other options, spending energy searching. Energy becomes precious. However, time to consider and second opinions do seem reasonable to me. But also, as my brother and I talked about, we are comfortable with whatever my parents decide to do and the timing with with they proceed. The decisions are theirs ultimately; we can offer input, but it is not our place to find answers, find "the right thing." Our best role right now is emotional support. Whatever they need to do is best and I mean this in the fact that they need no extra negative thoughts ("I shoulds" etc.) so whatever they choose is good. To me, it's almost insignificant. It's the other stuff that's the important stuff. The dying. The preparation for dying. Which is NOT the expectation of dying. Finding the peace, finding the acceptance eventually. Circular phases we probably all will pass through: denial, anger, bargaining, depression, acceptance and back again to denial, anger,..... Or maybe we'll just go throught once. Who knows. (New thoughts compliments of readings this evening.)

My online purchases arrived today. Skimmed through all, one looks particularly good, Sacred Dying. I'm considering purchasing it for Quita and Cam and Blake and perhaps Mom, but I don't know if, in fact I do know, a book is too much for her right now. Way too much. Letters on pages. Other people's thoughts. Way too much right now. And the same for Dad, I would like him to understand/hear? some of what's in these books but I don't know how that would happen. We'll see. As I wrote earlier - follow the leads. Right now, I have the books, I will skim and read skim and read. If I am to be a transmitter I will be. If I am to keep all to myself, I will. I don't have to worry. I just have to follow the leads.

One of the library books, 100 Questions and Answers about Melanoma and Other Skin Cancers, told me that all immediate family members of someone diagnosed with Melanoma should right away be checked head to toe (literally) for melanoma. This diagnosis happened five years ago and somehow I was unaware of the severity and the implications. I was incredibly naive. I had almost no clue. The diagnosis and surgery were probably about as important as my sister's recent appendectomy was to me last weekend. I had no idea. Anyway, needless to say, I don't think a SINGLE ONE of us children or siblings of dad have have anything checked.

Good night all.

Love.

Thank you God.

Definitely a Journal

Not a blog, a journal. The books came from the library, all 5. Skimmed one, anger about incompetent, or more mercifully, uninformed, doctor Brust, but then anger for letting himself be uninformed to do with the gravity of my dad's situation and what could have been done 5 years ago when the melanoma was removed.

The pain in the chest, near armpit and the shortness of breath, both symptoms of an anti-seizure medicine my dad is currently taking - he read this this morning while I was there for coffee. The relief was immediate for him. He said aloud he hadn't even told Mom that both his lymph node sites under the arms felt swollen - he was blanketed, disabled by the sickening despair of the quick spread of the cancer. And he hadn't told Mom because it's what I said before, they each are hiding things from the other in order to not distress the other more.

Thank you God for our lives.

Dream?

One recurring thought, "What was that dream?...Oh, wait, it's not a dream is it?"

Fear

Shortness of breath - is the mass in the chest already getting larger? Pain in the left shoulder, near the armpit - is the mass already getting bigger?

I think this is what was on my dad and mom's minds yesterday and the day before.

Last night my father tripped into a rage. A rage that I've not seen since (and perhaps that was the first time too) since long ago when he and I erupted from our years of misunderstanding and pain and desperately wanted to hit each other and went out to the porch (because you take fights outside, right?) and stood shaking and grinding our teeth and jerking and snarling and wanting to hit each other, daring the other to, knowing how much guilt the other would feel if it was done, and we ended in an animal hug, clutching, scared, still afraid, still somewhat unresolved, but clutching, to help ignore what we had just come to. So this rage, which was last seen in a very "appropriate" (it's all relative) situation, to do with years of a father-daughter relationship, of OUR father daughter relationship, was seen last night provoked by nothing more than my mom opening the door of the microwave on the bag of popcorn that wasn't popping as it should. Yes. That's it. My dad barely got out the snarled words, "Penne, don't DO THAT!!!!!" as he tried to tell her she had just RUINED the bag. He pulled himself away and got down the hall. This is evidence. Pure evidence of the fear and stress we...they... are under. They're together. They've got each other. They each know that getting upset may make the other more upset. And they were at peace. And now that they have some fear - how do admit that - "because we're going with 'we have a peace'" right? So how can I admit my fear, so it simmers and simmers and boils and erupts. And the emotions were completely transmitted to me as well, or perhaps they were unleashed. At that moment I too want to yell and beat. I was so ready to hit, to pummel. I had a huge rage in me at that moment as well. But my dad saved us all by getting himself away. Or did he? Yes. Because how could we have gone on with violence? But obviously there is stuff here, stuff there, that is wanting to come out and is not coming out.

I am so blessed to have Seth right now. He is intentionally here for me. He is very carefully watching out for me. And he is under stress right now himself, apart from the cancer.

Following the Leads

Yesterday Erica, my sister, had her appendix taken out, at about 4:30 in the morning. I went to stay with her a bit during the day and I brought her, among other things, my book Glimpses of Grace by Madeline L'Engle. It's similar to a devotional book in that it has short readings, marked with dates of the calendar. My sister likes devotionals and L'Engle's writings deal with life, therefore a lot of the readings refer to spirituality and philosophy and other reflections. It was a whim, Erica doesn't really like to read, but I thought some short substantial pieces might be nice. As it turns out she didn't have use of the book but as I was talking about the book I remembered that L'Engle had had her husband die of cancer and I started greedily skimming for references to that. I came away unsatisfied but determined to find out where I could get more "meat" to her writings and searched online last night. I ended up ordering three books online and requesting five more from the library. All have to do with dying and/or ritual and/or the sacred and other related. I don't know what I'm doing. I'm sure there's a part of me that's trying to find out "How To Do This Correctly" and while I KNOW there's no correct way, no way to make this 'good', no way to avoid the confusion and chaos... I want all the information I can get. I want all the help I can get. I expect I'll skim books and be led into some passages and have no connection to others. I guess I'm trying to make sense of it the best way I know how. I guess this is part of my coping mechanism. Though it's almost yucky to compare the two, I realize, this is similar to what I did during my engagement to Seth - voraciously sought out info from books and wise people (and always God, who happens to work through books and wise people as well as one-on-one :-) ) on marriage and what in the heck I was getting into, what the heck was going on, what the heck was I feeling, what the heck were things I should be thinking about.

My sister is doing well, probably has arrived home now and is being settled into her safe apartment with my parents bustling about her.

Shortly, Seth and I will go to my aunt and uncle's to drop off the long awaited cds containing the photos of our wedding. Our community is secure. The circle of life is. God is with us.

Editions and Additions

I umm, have been going back and editing certain posts. This is neat. This is my first writing experience like this. Writing something and then editing it to more accurately express what I want to say. But I felt I must confess to you this since the posts all have original dates and when I make changes no sign of a disturbance is left on the blog. I just added a bit to Sunday's post, clarifying, I think, my position. Saying a bit more directly what I was being a bit demure about I think...

And now for something completely different. Shortly, we're off to meet with the medical oncologist. That is the doctor who is in charge of chemotherapy and other treatment options. We'll see what we learn.

Be well and thank you God.

It's a union!

Last night Seth went to work with me and later in the month I'll go to work with him! How neat is that to have jobs where your partner can appropriately also spend time as your partner at work? Such a new and comfortable and "right" feeling. I love having a spouse. I love being married to my perfect complement.

I organized a special Saturday outing to go see the play The Miracle Worker at our local Bedford playgroup. Three clients, Seth, and me. We all met at Target and drove to Bedford in the Buick which we (being mostly Seth) cleaned out yesterday. Lucky Buick! A 6th grader played Helen Keller and boy was she impressive. Eh, she's homeschooled - whaddya expect! The physical scenes between Anne and Helen were also super - I got tired just by watching 2 minutes of the back and forth wrestling and frustration and repetition of defiance and one of my clients who uhh, sometimes is a bit physical and energetic herself, was engrossed, leaning forward, unblinking, occassionally letting out a shocked "No!" as she lost herself in the drama.

On the way home Seth and I had a small discussion about whether or not in the future, white people would be able to play Black roles and black people would be able to play White roles in average local plays. I say it will definitely happen, small makeup changes. But in the long term future, even more definitely, unquestionably, since we're gradually blending colors and hair and body types of people groups from all different latitudes so it will be difficult to find someone who looks just like someone looked say in 1880. I mean, we don't worry that we're casting tall people now even though the average male was say only 5' 4'' (made up guess) back in 1880 because we can't FIND enough short people now. Even if the black people who played the servants last night on stage didn't look quite like ex-slaves would have looked in 1880 being only one or two generations removed from Africa, that didn't bother us did it? We found it completely acceptable to have the black people playing the black roles even though they don't look like those servants would have looked. We're perfectly content because we still think of black is black is black and white is white is white. I think this is a subtle example of our deeply held yet unacknowledged racist foundations. That it matters SO much that a person called "Black" today play the slave role and not the "White" role and vice versa. This is local theatre. See, I don't think it's only "accuracy" that we're focused on. I think there are some "givens" that we're using that are in fact, NOT givens. I'm not arguing for professional theatre right now. My point is that one day, we will all look so much alike that we will be able to accept anyone playing the part, adequately made up (correctish speech, headwrap, barefeet, stance, makeup to enhance, etc. ) (Actually, I guess that's not my point, my point is that I wish that day were already here.) For now though, we apparently can't get past it and it would be "unrealistic." Even though it is already unrealistic and we are not bothered by other things in the play that are unrealistic. Never mind that Anne looked to be in her mid-30's playing a 19 or 20 year old. We make exceptions all the time. In Anne's case because we "had" to. Yah... Good reasoning. No. We didn't "have" too. We decided that we wanted that actor to play Anne even though she was a bit old. It was worth it to us. It's simply not worth it, it is not a big deal to us, to have other-than-black play the servant roles. There were black actors for the roles, so there. Simple. Why are you always making such a fuss Jessica?

But back to the union, the partnership. At the end of the month I will accompany Seth to chaperone a high school dance! Hee hee! Yay!

Be well all. And thank you God.

Answers

The growth in his chest is largish, about 4 cm, but it's not in a position where it's bothering anything right now so we're not going to deal with it for the moment. This spot is not the same spot that's been present and unchanging in recent chest x-rays. This growth is most likely part of the metastatic melanoma, though there is a teensy teensy possibility that it is it's own unassociated tumor. No need to bother with details at this point. And here's why.

The melanoma, which started on his skin, above his right eye to be precise, went into his bloodstream, hence it became mobile, hence the term metastatic, meta-after, beyond and static-stasis, stationary, so beyond being stationary. Although they took out all the lymph nodes in the right side of his face/head when they removed the original melanoma (5 years ago) and they found no cancer in the lymph nodes and so they thought they had caught it in time, apparently they didn't. Apparently it had managed already to escape into the bloodstream and make its way to the brain and other places. One tumor was removed from the brain and apparently where there is one there are others, they are simply babies, begining to grow. Like when your block of cheese starts to turn moldy. There's a teensy spot you don't even notice and you may eat. Next time you notice and you cut off that side before you eat. And next time you go back, the whole block is suddenly covered, exponential growth maybe? I'm out of my league now and just making up analogies.

So radiation is ineffective now since radiation is location specific. Sure we could zap an area of the brain, lose that part of the brain (maybe speech, maybe sight) and pause the crabby cancer in that little place but it's an invisible web throughout the brain, so it wouldn't help. Whatever we do needs to be systemic, needs to be whole body. And by the way,

they did give him a death sentence

In case I wasn't clear.

So our focus will be the whole body, we meet with the chemotherapy doctor on Tuesday. Chemotherapy of course being poisons introduced into the body with the goal of killing the cancer more quickly than it kills the healthy tissue. The words Interferon and Interleukine-2 and CRB-2 or something and other things come into my head. I wonder if these are chemo treatments.

Fortifying my dad's immune system is another strategy. Empowering his own immune system to get rid of the cancer, slow it down, as much as possible. Certain detailed nutritional regimens would do this. I wonder if you can with nutrients fortify your own body without strenthgening the cancer???

Yesterday, a woman named either Heather or Jennifer (I thought for sure it was Jennifer and have been calling her that but then I thought I heard others call her Heather) told me about Ash versus Acid. That cancer needs an acidic environment in which to thrive. So you try to make your system as alkali (ash) as possible. There are long lists of foods and which way they fall.

Then there's Qi Gong, with an institute in China. Energetic healing work.

So... what to do? Time is limited. How to do it. What to do. What to do.

I hope that the Doctor on Tuesday will be able to give us an idea of how quickly the cancer is expected to take over (the stage of pain and debilitation), how quickly without treatment, how quickly with treatment, and since his treatment involves severe nausea, fatigue, anemia, etc. how many "good" days would he have among the bad days. I mean man, if I were my dad I'd go to China say, but wait, no, not without my family, what if it doesn't change the course and I've lost precious time with them, but wait, even in China, would I want to spend my last time with them there instead of home? But what if it helped and I was able to live many many more years? Then months away, even from them, would be worth it. We really need God's guidance for treatment procedures. We need God's guidance and because we're dolts we need it thrown in our faces obvious.


So far (being less than 2 days from the blunt talk) we're all kind of quiet, sitting with the news, an odd kind of tentative peace. I teared up once in the Doctor's office when he replied "Yes, sir" to my dad, delivering the unvarnished answer to the dreaded question my dad had dared ask. We were all starting to cry, then we came back. And today on the phone message I was leaving to update Holly, I started to cry, but held back because I was at work out in the open. So I need to perhaps cry a little. Mustn't mustn't mustn't let it get buried deeper and deeper till it's inaccessible until some traumatic eruption in the distant future. Let it out at natural occurences. Though I didn't these last two times. Perhaps I should then focus on it during a period of quiet for myself. Force the feelings. For therapeutic purposes.

How robotic do I sound?!?!

Be well. And thank you God.

Metastatic Melanoma in the Brain

So I'm thinking this is mostly my journal, which is good, because I could probably use a journal right now and it's quicker to type than to write and I haven't been writing in my journal for quite a while.

Here's what I understand at the moment. The tumor removed was shown to be metastatic melanoma. That means that it metastasized (moved) from somewhere else. That place may be the melanoma above his right eye five years ago, for which they did surgery and removed the entire lymph system of his right face, or it may be from the dark spot in his lungs or it may be from some other area in his body which they haven't seen yet. Where it is from originally will affect the course of treatment. They do not know yet what the dark spot in the lungs is. My mom and dad tell me there has been a dark spot showing up on lung x-rays for years that is unchanging. We do not know if this is the same dark spot they are talking about. Cancer in the brain is serious. I think most people do not survive it. I am not sure about this. This has to do with brief web surfing, reading some and printing out most so that I could look over it later. But my printer cartridge gave out, so I didn't get most of what I intended to print. The American Cancer Society's local chapter in near where I work so I think I should go there tomorrow in order to find questions to ask. We are walking in blind I feel. The surgeon has already proved himself to be deceptive in the distribution of information, albeit possibly for his own rationalized good motives. I will be accompanying my mom and dad to the meeting with the oncology radiation doctor on Wednesday. The following day they have a meeting with the surgeon who did the operation (he's back in town from his Labor Day trip), and the following Tuesday they meet with the oncology chemotherapy doctor. I thought simplistically at first. What's the treatment? But no, there is in fact NOT a consensus on treatment, even once the problem is zeroed in on. There are many many treatment options. Should the doctor present them to us? How can we know the ins and outs of the different options? Should the doctor do what she believes is best? Why take one single person's views? Should we aim to visit better known cancer treatment centers (e.g. Duke) to get more opinions? Is it worth spending the time?

I said today, my dad might not be around in a year, but I didn't believe it and I told Seth I didn't believe it. I do think somehow he will heal and be healed, but I'm trying to figure out if this is a lot bigger than I realized. See, I'm beginning to think so. I'm beginning to wonder if the doctors are stringing us along, giving us "quality of life for the time that remains." Boy that would piss me off. I want to know what I'm dealing with. Because even if they were to give a diagnosis of "terminal" I would not take it as terminal, but I would understand the seriousness of what we are dealing with. And the reason I wouldn't take it as terminal is because of my experience with allopathic medicine (granted it's limited) and my understanding of its limitations, my understanding of other forces involved..

I cannot imagine that my dad might die early...from cancer!!!!! No way. That's to give a sense of my feelings, sure I can believe it, the "no way" is the surreality of the moment. This really does all feel like play. We're treating it seriously with respect, but surely it's not truly happening.

So, my dad's been picking beans in the garden and picking and seeding peppers and then freezing them. His speech is better when he's had rest and quiet. When he's been around a lot of people his speech gets quite garbled and his comprehension decreases as well.

Speaking of post-surgery - the staples on his shaved head look mighty cool. He looks like a Harley badass.

I see God being able to clean his system. I've been visualizing a cleaning kind of like a flea comb gets fleas and like a sieve lets water run through. Anyway, that's the kind of mental image I've been having. Weird, huh?

And this is God, not a vague, energy of the universe, but the God, the one God. God, guiding light God. Support of all God. Omnipresent God. The I Am. Always. The great one. The Merciful One. The Healer. Still, completely uncomprehensible to me. I don't claim to be telling you what God is or who God is. Truly, I don't know but I do know I want to be fully a tool of God, fully used, and I would be very lucky to have my understanding increased.

Be well.