Postscript

One week post radioactivity. Yesterday I thought I detected a very metallic taste and odor. Does radiation taste. It passed. Pink insulation on the side of the road reminds me of flesh. Flesh with blood drained out, fur thrown free. I soaked in the tub and scrubbed my skin until it gave up little radioactive flesh rolls that look like gray splinters. I take extra care when I rinse the bathtub but is it enough? I don't feel capable of dealing with radioactive material unsupervised. Is the radioactivity hiding there, an invisible cloud. Or is it just inside me. At the weekend, we decide not to make love, as a precaution. All of my secretions are suspect. I discard my toothbrush and used q-tips. At the border I set the radiation alarm off as predicted but inside behind a special closed door 2 detectors fail to read what's actually in me. The device guesses Industrial Barium. I wait 45 minutes and then am approved to go home. The exercise is ridiculous and the border officer jokes with me and I am forced to joke back. My flesh knows how to react to many situations. At the hospital before the scan they wrap me up in warm blankets and the bed vibrates gently as they image me from head to toe. I drift in and out, it is not unpleasant, my flesh relaxes and I stay so still, I want to make a good image.

Low Iodine Diet Day 17, Radiation Day

I am now radioactive. 4mc. I have managed to make it to this moment despite feeling so wimpy yesterday. I even slept well last night. There were a lot more people in the nuke med waiting room today. An 80 yr old woman and her 50 something daughter waiting for testing, a woman with her husband dozing in a wheelchair. A single girl with a pink iPhone and slicked down hair. And me and my umbrella. My song for today is Radioactivity by Kraftwerk. I say this sort of tongue-in-cheek but somehow it lightened my mood about the whole thing.

I learned a bunch of new stuff about Facebook today and the algorithms that control our experience there which I have known but today it really hit home. I have been really exploring my feelings about Social Media lately. I forgot about the treatments and thought about the future for a little while. So that was good.

I'm fine, itchy but fine.

Sketchy

 Thinking about William Morris

Between you and me, I'm overwhelmed. Everything feels very touch and go. I am one day away from swallowing the prescribed radioactive iodine and I can't say I don't have reservations about what is about to take place. I've been to the hospital twice in two days to receive a shot deep into my ass muscle that will hide the effects of the synthetic hormone Liothyronine during the prescribed nuclear scan. 

I discovered a few days ago that I have likely been under dosing my Liothyronine. My lifeline. I've been brain foggy and was feeling like my world was closing in on me. I was pretty sure it was the early signs of dementia, seriously. I was doing everything slowly. I found myself in a kitchen filled with young people buzzing about and I could not keep up with the conversation. It was frightening. I thought it was hunger from the prescribed diet and that was probably a factor but it wasn't the whole story. In 9 months I have gone from having one healthy thyroid that I thought worked pretty well—although now I have some doubts—to half a healthy thyroid, and now no thyroid. At first the medication made me jittery so backing off on it seemed the right thing to do but I went too far obviously.

I am struck. I am without a part of my body that I barely noticed or even understood and now I am tasked with accepting the reality of living with a dependency on medication that I don't quite recognize the effects of. It all makes me want to break down and cry. In the hospital yesterday morning waiting for Mark to park the car I just wanted to weep big poor-me-tears. In that vast waiting area, so somber, so many sick people coming in and out. It felt scary and bewildering. I felt lonely there and loneliness is not something I generally think about but this whole process makes me feel profoundly lonely. It is my job alone to carry my body through this medical obstacle course. The shots make me feel sick so I can't do too much, the whole thing is distracting me from what I would rather be thinking about. Stress causes cancer you know. This is the ridiculousness of the whole exercise. Dealing with cancer can give you cancer.

My friend who has the same cancer as me but in more sites started her low-iodine odyssey yesterday. I stopped by today to give her a hug. She reminded me that I was almost done. Friday is the scan and then I can return to normal. Another new normal.

Low Iodine Diet Day 8

 

 Lunch of turkey, tomato, baba ghanouj, hummus, cashews and banana.

Here I am on Monday again. 8 days into the diet. I think I am doing a reasonable job but I must admit I am hungry. We sailed on Saturday and on our way home I bought a huge container of cashews (unsalted) and stood outside the store eating them, I resisted the urge to open them in the store and start gorging myself before I had even paid for them. I couldn't go any farther without eating something. So there I stood in an underground parking lot on 4th avenue in Vancouver oblivious to everything, trying to get my blood sugar back up. The danger with this diet is avoiding defaulting to too much sugar and choosing protein instead, but finding protein that is free of salt is tough also.

Beyond all the diet issues of the last week I had to face some other tough issues in my personal life. Learning to reign in my enormous ability to be horrible to those around me when I am feeling frustrated. I have dented something sacred and will work harder to control myself. I cannot afford to lose one ounce of the love I am the recipient of.

I saw my stepmother on Sunday and was moved by how much she has deteriorated since I last saw her in the Spring. She did not know me, could not meet my gaze. I choked back my sad tears and held her hands, moistening them with some nice cream and massaging them, and her arms and shoulders  gently. I told her little stories adding little physical actions, walking my fingers across her small hands, making little nibbles on her arms with my fingers and scratching her head. The story was about fleas. She smiled into her lap but never looked at me. Someone is in there, somewhere.

I went home and felt grateful for my crappy lunch and my ability to feed myself and for the person across from me who loves me so well. We sailed in the afternoon and somehow the conversation of the day before helped us both work together better getting the boat in and out of the water with mutual cooperation and kindness. I am humbled.

Low Iodine Diet Day 1

So I started my low iodine diet yesterday. It's advertised as a 2 week process but it turns out it's really for 3 weeks ending with a nuclear scan. I suspect in the third week you feel so weird from being shot up with all the crap they put into you pre-scan, eating might not matter that much. When I first started this process last December I had total faith in every step of it. This radioactive bit has me concerned. I don't relish being vaguely poisoned, but I am going along with it. I am nothing if not a good dutiful girl.

The long and short of this diet is no dairy, or anything containing iodine which is a dubious substance and is not really listed in the ingredients of things. Oh well. I eat whole food, I should be fine. No seafood for 3 weeks.

So... that leaves a lot of meat, vegetables, fruit and nuts. The challenge for me will be to avoid sugar as a way to comfort myself. Poor me. Boo Hoo.

Yesterday I ate the following:
Blueberries, home-made granola, ginger tea, raw cashews, dates, carrots, more cashews. Avocado, coleslaw, baba ghanouj. More dates, cashews now gone. Wine. Almonds. Brown rice, various greens, onions, celery, beef, fresh ginger. One measly piece of crystalized ginger covered in white sugar.

At some point during the day it occurred to me that instead of thinking about food and feeling grumpy I could get busy. I made tomato sauce with some of the bounty from the Urban Farm. And wouldn't you know it, I was cheered up right away.

Went to the big vintage trailer meet last weekend. It was a good one for sure. I still can't quite believe the absurdity of this event and my role in it but I find the people to be so interesting and sincere. We listened to some musicians play by campfire and had a big out of tune sing along. Pearl sitting next to me exclaiming "this is wonderful". And it was.  Here are some pictures! I even managed some sketches as well as some knitting.

June Blog

So what happened in June was I had the second surgery to remove my thyroid. The good part. The bad part went in January. It took a long time to get over in the winter. I felt profoundly wounded. I had had a huge scare at the discovery of the tumor  and then it took quite awhile after the surgery to get the results. So then I know something that I didn't want to know, but the good news is that part of me was in a trash heap somewhere. The nut sized cancer stopped dead.

The second surgery was easier. I had an idea of what to expect but the process of healing is still a job. The first 3 days were okay and then I was on my own for a few days which was not ideal. I should have asked for or demanded more help. After 10 days they took the bloodied bandage off and pulled out the sutures. The surgeon exclaimed "this looks great!" patting himself on the back for my benefit.  Somehow the incision site is less painful than the first time and I am grateful for that. In January I did not touch my neck near where they cut into me for over a month, despite knowing that gently manipulating the scar helps to soften the healing tissue. I felt apart from my body. 3 months after the first surgery I could feel connections being remade deep in my neck. Just around the time of the second surgery I was finally feeling normal. So I was more prepared for the second offense but the healing was still work that had to be done. In all it took about 3 weeks to feel okay again. There were real highs and lows during that time but then it all just dissolves little by little and before you know it you're getting up, getting dressed and going about your business like nothing happened. I was fortunate too that two other friends underwent surgery around the same time as me so I was able to help them and also have some really helpful discussions about healing. The surgeon only presents the landscape of the surgery they don't ever discuss in depth the after effects of the anesthesia on memory, the bowel, general outlook. In addition to the aftermath of the surgery I was also getting used to taking daily 2 or 3 Thyroid pills. At first 3 was too many and I felt horrible and jittery and I wasn't sleeping. The surgeon suggested backing off to 2 and that was a miracle.

14 days after the second surgery I awoke one evening, after a good weekend of playing tennis 2 days in a row and I felt so profoundly sad it was alarming. I climbed into bed with my husband and he rubbed my back as I drifted back into sleep. I felt badly about the damage to my body, the irreversible-ness of it all. The news came back, the pathology report was clear. No cancer in the side of the Thyroid they had removed but it was hard not to think, why couldn't I have kept it and used it rather than taking pills for the rest of my life. I felt again like an insignificant wounded animal up against a force much larger than myself and while I was grateful for the care I received it's hard not to feel like a statistic and a board recommended course of action. Am I out of the woods? I think so but the treatment continues, there will be another major test I will have to undergo in September involving Radioactive Iodine and 2 week diet beforehand. I will comply, what other choice do I have?

So all this is to say why I never blogged in June and maybe why the blog has been sparse all year so far. I am fine. I am here. I will prevail.

Resolute

I'm a late bloomer a slow mover despite my long legs which make me appear to be moving around quickly. It takes me forever to get to things, I feel like I have been waiting for something big to happen that will compel me to act and act quickly but it's not really happening. My resolution this year is to finish a couple of major projects that have been hanging around. One is a story about the day my mother died. It's been 15 years and I have multiple drafts, the most recent one I wrote over Thanksgiving break about 3 years ago. I just reread it this morning and I can see where it can be improved. The question that arises for me is when to work on this and when to make it happen. When will I get down to work, when will I stop writing about writing and simply write. Reading the piece is hard, it has flaws, and it is sad for me to read. I think my writing has actually improved a bit in the last few years thanks to this blog and also to all the books I have been reading. I am more critical than I used to be and so I must be careful not to feel like it's all shit and then be left with nothing. Instead I think I have to go piece by piece, word by word and rework it slowly but with an end in mind. If any of you are interested in being a reader, let me know and I will send a draft along for you to read and comment on. Help me out of my writing adolescence. I will get it done and then I can move on to the next project.

Snap out of it

I have a friend who is sick. I don't speak to her often and so I didn't know she was sick until her husband told me. She is home now from a 2 week stint in the hospital. I spoke to her husband today, I have known them a long time, we have been through a few things together over the years. I wanted to sweep in and be philosophical for them, to tell them if this is the time you have left or whatever then rejoice in it. We have no time, we run out of time slowly or quickly. I have not lost a friend my own age since car accidents in high school and chronic illness in college of a person merely on the periphery of my experience. I have lost my mother and adult friends my parents age. I am putting you on notice. We are going to start losing people, it could be you, it could be me, it could be your sister. This is the wake up call I got so long ago after my mother died. Quit fucking around and rejoice in this life. Don't worry, put on a few pounds, enjoy flowers, hug everyone even if you feel uncomfortable about it. One day you will go to a place where there is no one left to hug and then what. I am not brave in the face of fearful situations and cancer is scary but have you ever noticed how everything melts away in your own worried life when you stop to help someone who needs a little help? Right now I am texting my friend and I am telling her to enjoy every breathe and I am going to do the same and you should too. Who knows what tomorrow brings.