Sandostatin

Visual Interpretation of What Getting A Giant Butt Shot Feels Like.

My rear hurts from my first shot of Sandostatin LAR Friday. Still. They shoot you with a knitting needle and inject maple syrup in your butt. Seriously. At the time it's worse than a regular shot, but not that bad, it's just unlike a regular injection, the site of the shot still hurts days later. I am paranoid of side-effects. So far so good, I think getting through today will be it. I've determined this from a blogger's account of having really bad side-effects.. She also had her shot on a Friday and started having wicked side-effects on Wednesday. It's scientific. Clearly if I'm going to have issues the same thing will happen to me.

Sandostatin is a chemotherapy drug. Which scares me. The word chemotherapy. Ooooh. It's annoying how much power one little word can hold-frail people, bald heads. I don't expect the same problems, but it reminds me that I have a tumor they can't entirely get rid of.

Mysterious Ways

I got a message from an impish moon goddess the other day, blown over from the sea on an interstellar transmission. It was amazing. She's this crazy gypsy, with olive skin and midnight hair. Tuning in reminded me of thrift store dresses, clove cigarettes and pachouli oil. It also reminded me that I have no idea who I really am. Look, I somber skate sullen through my days, living on bland assumptions letting my soul sigh. But sometimes, somebody is so affirming, so silky sweet, it makes me think, “Maybe I am this angelic vision they have of me. Maybe I am.” Then I begin to feel the big I AM, the eternal I AM, the I AM that is everything and everybody.

What I Know for Sure

I just started reading Wendy Craig-Purcell’s book Ask Yourself This. From the author’s Amazon page:

"Ask Yourself This" is a different kind of book. Most personal growth books give you answers, this one gives you the kinds of deep, self-reflective questions that can open you up to entirely new ways of thinking and living.”

Her first question is “What do you know for sure?” meant to get at what you truly believe, not what you’ve been told to believe (Purcell, 14).

Here is my answer:
I don’t believe in an anthropomorphic god, like a dude with a white beard or a green goddess, I don’t believe in any kind of conscious entity out there. I believe in the sacredness of all people and all things.
I believe we are responsible for bringing meaning and purpose to our own lives. I don’t believe in providence or a divine plan, but I do believe in the divine nature within each person and our own ability to construct a meaning that will lead to the highest good from our every experience.
I believe that we are eternal. I don’t believe in a soul that goes to heaven or reincarnation, but physicists believe that up to 93% of our bodies’ mass is made up of stardust, so in the sense that our matter will forever be a part of the universe, I believe we do go on.
As it says in the Gospel of Thomas “His disciples said to him, ‘When will the kingdom come?’, ‘It will not come by watching for it. It will not be said, “Look here!” or “Look there!” Rather, the Father’s kingdom is spread out upon the earth and people don’t see it.’” Based on this rationale I do not believe in heaven or rather I believe it is an ecstatic state of being and not a place.
Finally, I believe that the way to salvation is through forgiveness and compassion. I believe that in our forgiveness of each other, we are granting a divine forgiveness, to be forgiving is to carry out God’s divine plan for salvation here on earth.

What do you know for sure?

Contemplating Mortality

Contemplating my mortality is difficult. I'm not always the best at dealing with my feelings. Some internet article will mention the shortened life expectancy of the acromegliac and my stomach will turn and then I will try to fixate my attention on something else. Someone talks about chemotherapy or radiation and I blanch then quickly look for a tiny corner of my mind to stuff it in. I know this is a path to madness, although at the moment, when the dark thought seizes me, it seems the most reasonable. My survival instinct reminds me that I must continue to produce, perform, put on a brave face and act normal.

Strangely, there is also a new awareness emerging. I have become aware just how much stronger this entire process has made me. Currently, I am reading the book Flow by Mihaly Csikszentmihalyi. It's all about optimal experience, being in the zone. You know, that moment when a computer programmer's fingers just blast out the necessary code without them laboring over each line or when a mountain climber believes the world is himself and a rock.

" But afterward, when the activity is over and self- consciousness has a chance to resume, the self that the person reflects upon is not the same self that existed before the flow experience: it is now enriched by new skills and fresh achievements. "

While I understand that going through surgery and various medical procedures and appointments is not at all the same as a flow experience, I do think this sense of transformation is similar. This concept of having gone through some experience and coming out feeling indelibly changed. I feel like a much stronger person after having gone through these events and I have to remind myself that new experiences will make me feel stronger still.

I have also been reading You Are Here by Thich Nhat Hanh and in it, he writes of being present for your pain. He has the loveliest phrase, "I am here for you, dear one," to describe this sense of being present for your own or others pain and suffering. Here is where I bring together my fear of pain and my own mortality, this idea of peak experience and being present.

Writing. I am just able to sit for small moments to be with my own pain and be compassionate toward myself, normally, I will try to somehow stuff my fears, or distract myself. But when a phrase rings in my mind such as "Contemplating my own mortality is difficult" I am compelled to follow it. It's kind of funny. My initial response is 'like well, duh.' But as I explore the thought I become equally entranced by clustering together various ideas, words and phrases as I do in uncovering and working with my own feelings. I don't care if you think I'm the best writer in the world, I care about the experience of writing. I am amazed at how much courage this experience gives me.

I have to remember to turn in my prescription for Octreotide. I know it’s going to take a while for my insurance to approve it because it’s super expensive. I am not thrilled about the big needle in my rear end, because even though my growth hormone levels are much lower than they were, they are not at a level that my endocrinologist is happy with. (Bummer.) Radiotherapy is not on my most wanted list either, but even less wanted than that is more surgery or more brain tumor. I really like and trust my endocrinologist, so whatever he says goes for now. He’s a really interesting guy, very dedicated to his work, highly energetic, he gives me this sort of mad scientist vibe, but in a cool way.
I had to buy size 11W shoes this weekend! Isn’t that crazy? The feet just keep growing.
I recently had a post-surgery MRI, but I guess there was some kind of miscommunication because my neurosurgeon had really wanted to wait two months for some of the scarring to go down so that it would be easier to see what the surgery results looked like. At this point they couldn’t tell what was leftover tumor (it was hard to get it all because of how close it was to my carotid artery) and what was scarring.
But, on the bright side of all of this, I did have my last visit with my ENT surgeon for the foreseeable future, so that’s one less round of doctor’s appointments. Anybody who has had to deal with chronic health ailments knows how annoying it is to have to interrupt your regular schedule multiple times per week just to go to yet another doctor’s appointment.
I found a link to a news story about an Acromegaly patient. Pretty cool.
Other than all of my crazy health business things are really good. I’m happy to be back at work full-time. This past weekend I took a few days off and my sister, mom and niece came up for a visit. We went to Riverfest  and toured Debrand’s it was exhausting, but super fun.

Crazy Blood Test

Okay. So, I think this when they were testing my GH (Growth Hormone) levels. I've read that this is often done via a oral glucose tolerance test. This isn't exactly the thing I had done. Maybe it had something else to do with blood sugar...
I had to fast the day before, which never sits well with me, not eating makes my chubby behind cranky. I go in and they took some blood. I want to say four vials. Then they set me up with an IV. I think this is how they administered the glucose instead of orally.
This is when I passed out. I come from a long line of people who pass out when they get large quantities of blood taken. Don't judge me. It completely freaked out the nurse and she had to call a bunch of other people in to pick me up off the ground. I remember telling them that I would rather stay down there. I got hauled into a hospital bed where I chilled out for a while the lab tech periodically came in to take some blood, I believe about once an hour.
Afterwards, the nurse gave me a voucher to go get some food down in the cafeteria. Not as bad as it sounds, really. Passing out was actually kind of funny to me.
CT Scan

Visual Field Test

Visual Field Test
Easy.
The purpose of having a visual field test as I understand it is to check the integrity of the peripheral vision. This is important because often pituitary tumors can grow large enough that they can put pressure on the optic nerve. Sometimes vision trouble is the initial symptom that leads doctors to suspect a pituitary tumor in a patient.
I went to the ophthalmologist. The nurse led me into a darkened room. I had to put a weird hard plastic eye-patch. I put my face into this big plastic box, almost like a study-carrel at a school library. Then they gave me this little trigger to press, kind of like a trigger you might use to buzz in on a game show. All I had to do is stare at the screen and press the trigger whenever I saw a black dot.
After that they wanted to do a full opthalmologic exam. This was a no go for me, because I've had poor reactions to0 the medication they used too dilate your eyes, so I didn't have it, but other than that, no big deal.