Monday, December 24, 2007
Now, I find myself tearing up on a regular basis. I don't know if it's menopause, or if it is because in the deepest part of my heart, I now know that showing emotions is no weakness. It takes strength to cry.
And, alone in my car, I can feel deeply without an audience.
Since mom died in 1999, this time of year is usually for me, a time to celebrate and to add extra saline into the world. (After all, sea-salt has to come from somewhere, why not grieving daughters everywhere?) Whenever I hear "Ave Maria" or "Hark the Herald Angels Sing", I can feel mom sitting next to me during a December mass, holding my small hand in hers. I can hear her singing out loud and proud, vibrato, like an opera singer. (In my mind, whenever I hear the musical phrase, "in exchelsis deo", no matter who is singing on the radio or standing next to me, it is Mom's voice that drowns out all others.) "Amazing Grace", "She's Always a Woman to Me", "Stairway to Heaven" and countless unnamed Christmas carols choke me up with the memory of her. Not necessarily choked up only out of sadness or grief any longer. Often I am choked up with the gratitude of knowing that some small measure of her strength and generosity has rubbed off on me and on all of the rest of her children and step-children, grand-children, grand-step children, and so on. Sometimes, I am choked up with joy because of feeling that she is still here with me somehow and that when not here in those moments, she is up in heaven with Ashee Mouchy and Mitzy and Brute and Mother and Aggie and the countless other pets I've lost throughout my life. I picture her watching out for them, as they watch out for her. I picture she and Ashee sharing apples together.
This season, I haven't been listening compulsively to Christmas carols like I usually do to get my holiday fix of Mom. Despite that, this has been a very musical season for me.
Yesterday, at the Unitarian Universalist Church of Flint, I found myself getting teary-eyed as I watched my goddaughters and several other kids (and adult children) singing to the congregation as they told a story about prejudice giving way to acceptance of diversity. I had never heard any of the songs before, and I had no idea that the kids in our church had such strong, beautiful voices. Like with Mom's Christmas singing, I felt like I was home and safe. I hope the kids sing for us regularly soon.
This morning, on my way home from work, I was listening to NPR. The first story that I got to hear after getting into my car was about a bunch of Michigan musicians who had recorded about 200 different Christmas songs for people to download for free from the internet. "Suburban Sprawl" have been adding songs to this collection for the past 5 years to celebrate the season of giving and to remove some of the money-based commercialism that seems to surround the holidays these days. How cool. And, the songs that they highlighted on the radio show were all really good and original in style and content. (Hey-Louberts- maybe we should have a Louberts' original winter holiday concert CD. Pop can be the leader and we can be like the von Trapp Family Singers.)
It has been nice now and then to hear Deb practicing her guitar quietly. We bought guitars for Maddie and Ana. Now Deb gets to teach them how to play.
Once again, alone in my car on my way home from work the other morning, I wrote a simple song to celebrate Winter Solstice. I haven't written a song in a long time, other than random humming and nonsense words that I'll never sing again, let alone remember. This one though, I really like and I can hear it in my head with voices other than just mine.
Like mom, I often find myself humming. Usually, other people notice it before I do. I have what I call "Musical Turretts". I can't help it. Sound just pops out. Twenty years or so ago, my freshman year college roommate, Michelle, once laughingly accused me of humming in my sleep. I asked her what I was humming. She said, "nothing in particular, you were just humming." At the time I didn't believe her. I denied that any such thing was possible. I don't sing, or even hum. About 2 weeks later, we were sitting quietly (hard to believe from the two of us who always have a word to add), when out of the blue, Michelle yelled, "That's It!" and laughed. I asked what she was talking about. She said, "That's what you were humming." I was very puzzled. "What?" She quickly pointed out that I had just been humming. I, once again, staunchly denied it. A few minutes later, I heard myself start to hum again. It took a few more years until I would admit to what Michelle had already experienced and firmly believed was the truth, that I hum. When I worked at Schuler Books in Okemos, one day I was putting away books in the science fiction section. I was minding my own business, doing my job. I loved to handle each book, look at who wrote it, smell the newness of the paper and read a couple of pages here and there to decide if I wanted to read more, or beyond that, to recommend it to customers who always counted on me for this research. To me, shelving books was a meditation in being present in the moment. Enjoying being alone, just me and the stacks, never mind that customers and co-workers might be an aisle or a bookcase away. Back to the story-- one day I was putting away books in the science fiction section. I was minding my own business, doing my job when a customer asked me what song I was humming. I looked up from my stool and asked, "was I humming?" She replied yes. Then I asked her, "what was I humming?" We laughed at that together after I revealed that I hadn't been aware that sound was coming out of me.
As I sit here on the loveseat, listening to Harry Connick Jr. sing Christmas songs in his smooth Rat Pack like style, I am also hearing a song sung just for me. Fat Cat, Biddy, is sitting on my left and Cindy Lou Who is pressed up against my right leg, taking her rightful spot as the queen of everything. They are purring in harmony to one another. Each has a unique sound and rhythm, yet they fit together, like a kitty cat barbershop duet.
Once, when I had brought a friend home from college for the weekend (it may have even been Michelle), mom joked with us, saying "LIFE IS A MUSICAL". I think I believe that now, like I didn't then. I think, maybe, Maddie and Ana have helped me believe that. I know that life is a musical when we laugh and make up songs for one another on the spot (like "I've Got Boogers in My Nose", which I made up and they can only sing in front of a limited audience, or "the Poop Song" that Maddie made up while she and Ana helped me pick up land mines in the back yard that were left by my well-fed dogs.) Every moment is worthy of music. Music can move us to tears or to laughter, calm or agitation.
What music brings your heart and soul to laughter, tears or profundity? (is that really a word, or did I make it up? Profound- ity, profound-ness, thoughtfullness, thoughtful truths)
Saturday, December 22, 2007
In 1998, my book of inspiration was Gene Logston's The Contrary Farmer's Invitation to Gardening. All over, that book was inspiration once again last year when I dug it out of the basement. I was delighted to find out (again, something I'd forgotten since reading it 10 years ago) that I don't really have to rototill every year. Another year, my inspiration came complete with incredible photos and the story (along with instructions) of a garden that began as hardscrabble dirt and became transformed over several years of loving composting, raking, experimenting, failing and succeeding to create what looks like paradise in the pictures. I bought this book, already out of print at the time for $3 or $4 dollars. The title of this book (which I still pull out and refer to almost every year) is (I think) The Natural Kitchen Garden. This book was lovingly written by one guy, photographed by the other guy of the pair that spent years loving this small piece of land in Maine. I could be very wrong on the title, but right now I'm too lazy to go find it and give you the right information. (I'll note it somewhere in a later blog entry. Hey, I didn't forget the corriander did I?) Either way, I couldn't find that book on Amazon. It may be disappeared in the way of single socks in a dryer. In 1999 or 2000, novel called Night Gardening by Elizabeth Swann swept me off my feet. It is a breathtaking love story involving a 60 something year old landscaper and a woman who is re-learning how to talk and walk after having a stroke. (By the way, the sexiest love scene I've ever read takes place between these two unlikely lovers.) Another book that inspires me repeatedly is called Seedfolks. It is a young adult novel written by Paul Fleischman. I love this quick read so much that I've bought and given away probably 5 different copies to 5 different people. I re-read it every couple of years and am inspired by each of the many voices in which it is written, beginning with a little Korean girl who tries to honor her dead father, a farmer, in a vacant lot full of garbage. This powerful novel only takes a couple of hours to read and provides hours of thoughtful reflection, laughter and inspiration in your heart. Some years, my cold-weather inspiration comes from magazines like "Organic Gardening" or "Mother Earth News". Johnny's Seed Catalogue, Miller Nurseries Catalogue, and more recently, "Irish Eyes Garden City Seeds" (website in the links section).
This winter, my inspirational book is called: "Animal, Vegetable, Miracle" by the novelist, Barbara Kingsolver, and family. I've read several of her fiction books, but never a memoir or non-fiction work by her. Shortly after I was diagnosed with cancer, a friend gave Deb and I a copy of the book. She wrote the following inscription on the title page: "July 3, 2007 Dear Deb & Aimee garden, cook, laugh, love--enjoy. Sue." She had already read it and knew that Deb and I needed some inspiration at that moment.
Deb read the book first. She would stop periodically and excitedly say, "We can do this!" The authors of the book, as a family, committed to living one year eating only locally produced foods. Sounds easy, right? Not so much.
Deb finished reading "Animal, Vegetable, Miracle" in record time. She couldn't wait for me to dig into the richness of it. Already, she was wanting to plan next year's garden to produce a variety of food over a longer time than we have done in the past. (Do you mean to tell me that setting out Cole crops in July only makes them grow without producing? No wonder I had no Brussels on my Sprouts this year.)
Finally, during my first or second chemo treatment, I picked it up and began to read. Each paragraph brought excitement. I had to keep stopping to digest the information. I had to keep re-reading in order to fully absorb the beauty of the words and the knowledge of the overwhelming stupidity of our current food culture. I found myself reading the same paragraph over and over, my eyes blurring, my excitement growing, my anger over corporate brainwashing growing even more than before. Then, after only a couple of chapters (and a couple more weeks, therefore a couple more chemotherapy treatments) I realized that my over excitement, agitation and anger had as much to do with the steroids that came with the chemo as it did with the content of the book. I also realized that I was re-reading paragraphs not just because they were profound and moving, but also because the Cisplatin had gone to my brain and befuddled me so much that I had to read my own name three times before I understood what it said. (This is a bit of an exaggeration, but not as much as you may think.) I also realized about then that I was squinting to read the words and that after five minutes or so of reading, my eyes were practically crossing. The words were piling up on top of one another, and instead of bringing me enlightenment, the figures on the page were bringing me exhaustion. The Cisplatin that was coursing through my brain was also drying my eyes to fuzziness and causing me terrible headaches when I read.
So, Barbara and family stayed in my book bag for about 3-4 months before my eyes and my brain were both clear enough to read again. (Of course, I also had to wait until I no longer used the narcotics to control the pain of my hysterectomy since the narcotics blurred not my vision, but my brain and made me fall asleep at the drop of a.....snore.)
Finally, once again, I began to read "Animal, Vegetable, Miracle" and once again, my mental ears perked up and I grew even more frustrated with agribusiness and our government and my own complacency in the ruination of the small family farmer. This time it was NOT steroid-induced agitation (maybe a bit hormonal induced, but mostly the book just made sense and a wake-up call is justified over these issues).
I, like Deb, am inspired by this particular (peculiar??) family's thoughtfulness, resourcefulness, and willingness to try an adventure together for an entire year's ride on an amazing food roller-coaster. This way of life used to be simply living within the regular cycle of human survival. In our generation (my generation-I am 39) and in our country (The United States), that cycle has become an oddity. Living within that cycle has become a strange extremism fit only for a liberal feminist writer to chronicle.
Really, I remember living in a similar way as a kid. Even now, I laugh while reading her descriptions of her tomato-infested kitchen in August. Been there, done that (even when I had "chemo brain"), plan to be there and do that again as many Augusts as I can fit into this lifetime (and maybe the next as well).
I am not done reading this funny, factual account of one family's recipes, cravings and excesses for one year. I find myself looking forward in each chapter, to Camille's, the college-age daughter, careful chronicling of recipes. I am amazed at this young woman's insightful puzzlement over her generation's attitudes about food and nutrition. Her creative use of zucchini in chocolate chip cookies intrigues me. I'll have to try that next July when the vines are plentiful. I may even plant a vine just to make chocolate chip cookies. Is that too much????
The younger daughter, Lily, has a practical approach to building her chicken flock which I admire and hope to learn when I grow up. Lily begins her venture by firmly standing within her principles when she vows to raise chickens for eggs only. Then practicality and dreams step in and modify her expectations (but never her principles, you never eat a pet and you don't name food--except to name a mean turkey "Thanksgiving"). To learn the lesson of practicality at such an early age is an awesome gift that her chickens have given her, not to mention hundreds of eggs and delicious meat. (I imagine that Lily's chickens taste an awful lot like the plump chickens that my sister-in-law occasionally provides from her modest flock in a moving pen up north. Allison, my sister in law, can no longer let her chickens run rampant on the farm free because their "new" dog kills things. Their old dog used to just herd them around the farm and back into the barn at night to stay out of teethshot of the local coyotes and wolves. In the barn, they would lay their eggs not in their intended nesting boxes, but up in the rafters and nooks and crannies that all barns have. I miss that big bouvier, Brutus. My brother, Paul custom built them a new home. It is a fairly large pen, with plenty of room to roam. In addition to their daily grain, they also love to help themselves to bugs and anything else that wanders their way. Their pen has wheels on the bottom and each day it is moved to a new spot in the garden or on the lawn so that the chickens can pay for their grain by killing destructive bugs, laying eggs in the pen, and fertilizing the area of the day. Paul, in his many years as a professional builder and visionary thinker, has definitely created a masterpiece to be proud of. A free-range, ranging home for what would otherwise be wayward or dead chickens. I miss that brother. (no, he's not dead, just a few hours away)) Anyway, I want to be like Lily when I grow up... independent, affectionate and practical.
The clear, concise research and statistical information that Stephen Hopp (Kingsolver's husband) presents so thoughtfully within each chapter also inspires me to want to learn more. His statistics on the U.S. importing and exporting of potatoes exemplified for me the reason why I should be conscientious of where my food originates. The whole world could be fed and economies would improve if we ate local and organically grown food instead of importing billions of pounds of potatoes in to our country to eat, while we ourselves ship billions of pounds of potatoes out of the country for others to eat. We would save so much time, money, gas, jobs if we would just eat our own potatoes and leave the rest to those who grow them in other parts of the world. They may even be able to earn a living wage by growing and selling locally instead of being paid by outsiders, American conglomerates, at rates close to that of the nothingness of slave wages.
As I said, I'm not done reading this lovely, lively book. But already, I'm looking forward to a second and seventh reading of it through the years.
I wish I could afford to give a copy to every senator and congressperson on the state and national level (and then, of course, handcuff them in place until they read it). I wish I could send a handmade thank-you card to every small farmer (especially organic farmer) who dedicates themselves to loving the land enough to care for it and to let the land care for them in return.
Part of my commitment to my lifelong journey of personal growth is that I am trying to be cognizant of my limitations. I know that I can't spread the gospel of living locally in the way I just described. I can, and will (and already do much of the time) do the following things:
- Try to grow as much of my own food as my freezer and pantry shelves can hold.
- Try to cook at home more often.
- Continue shopping at the Flint Farmers' Market (see link on the "links" section of this blog)
- Read labels and be more aware that "organic" may not mean what I think it SHOULD mean and if it comes from 3,000 miles away, it is not necessarily the environmentally friendly choice I think that "organic" should be.
- Try to eat more food that coincides with the seasons of the year. (No lemons in July, no Asparagus in December.)
- Try to remember to ask at grocery stores and restaurants if the food is produced locally and politely let them know that if it is, I will buy it. If not, possibly not. (By the way, at Trader Joe's in Ann Arbor, I found some awesome, very mild Brie that was reasonably priced and it is MADE IN MICHIGAN. Also in A2, Bella Vinos has hundreds of Michigan brewed beers and wines in stock. No lack or scarcity needs to accompany conscientious buying.
- Figure out how to use my beautiful little greenhouse without totally cooking my delicate seedlings before they can make it into the (locally harvested) horse poop in my garden.
- Compost more than I do now.
- Watch less TV and watch more of Little Bit (the blond bandit dog) stealing carrots from the garden. I also plan to watch the fat cat watch me watching her resting in the sun-soaked garden.
- Continue to boycott winter tomatoes, unless I can figure out a way to grow them in my own house or greenhouse during the long Michigan winter.
Some things that I consider too daring (or extreme??) for me to do in the interests of creating a better world:
- I refuse to give up coffee or chocolate, neither of which grows anywhere near Michigan. (I won't move to South America to get them either, that presents its own problem since English is the only language that I'm really good at speaking.) I WILL, and mostly do already, only buy Fair Trade/Organic Coffee sold at my church to benefit the Unitarian Universalist Church of Flint, the UU service committee, and the small farmers who produce those delicious beans. (Equal Exchange brand is what I get, there are others as well. The taste of their chocolate and cocoa is very different than what we are used to from conventional companies. Different in an awesome and better way. Yum.) I will only buy chocolate from companies that I know don't use slave labor (again, EE is a great choice, but there are others out there as well).
- I will not give up pineapple, coconut, oranges, Lemons, mangoes, or papayas. (I will, however, eat more Michigan grown apples and cherries.) When I do get the forbidden faraway fruits, I will try to get them from our co-op or other locally owned grocer.
Many of these things, I already do. I have yet to go to the extreme that Barbara, Stephen, Camille and Lily have gone.
On second thought, I think that in reality, their year was not extreme at all. It was real. It brought meaning into every bite that they took for 365 days, 3 meals or so per day. That's over a thousand meals!! (I'm not sure how many bites per meal to get the total figure of quantity of meaning for the year.) It was "normal". Eating the way I do and the way most other Americans do, may actually be the extreme behavior. That is important, I will say it again: Eating the way I do and the way most other Americans do, may actually be the "extreme" behavior. WE are the ones trying to alter nature to satisfy our cravings for a ripe Michigan tomato in February.
The word "extreme", maybe, needs to be culturally redefined. The new definition should not depend upon the current cultural or culinary fashions of the average Modern American Human Being. Instead, maybe, "extreme" needs to be redefined as something that pushes the boundaries of time, space or usefulness beyond what is practical or sustainable--economically, environmentally and biologically.
In a word: "unnatural".
What will you do to make the world a better place?
Friday, December 21, 2007
Okay, remember a while back when I was in my manic steroid half blind craziness in the middle of chemo and radiation when I talked about counting the seeds on a cilantro plant (coriander seeds, cilantro plant, I'm not sure why the difference in name)? I promised that after I finished counting, I would let you know my results.
I finished counting a couple of months ago, after the worst of the fuzzy chemo brain was gone and after the eye drops helped me to realize that I wasn't going to lose my eyesight from the chemicals in my veins. (Again, minor memory markers--see post from a few minutes ago.)
Why, you ask, do I bring this up when the ground is white with snow and my greenhouse is (once again) missing several panels due to strong winds sneaking in and blowing them outward. Well, it is almost January. It is almost time to think about next year's garden as I look at the brandywine tomato plant that I valiantly tried to grow inside during the winter months in a pot and promptly killed due to lack of light and irregular watering. I think of seeds as I look at the baby pepper and tomato plants that are about 9" tall in the pots of adult decorative plants in my bay window. I re-potted them this summer, using what I thought was finished worm compost, with everything pre-digested and ungrowable thanks to the legions of worms in my office. Really, what I thought was simply rich, fertile worm poop in a pot must have been hiding a few small, unseen seeds underneath. I think I may re-pot these brave upstarts to see if I can keep from leading them down the stray path of that poor dead brandywine.
Another reason why I bring this up is that I am sick of the large plastic lid from a cottage cheese container taking up space on my coffee table. Evidently, in my seed-counting compulsive mania, I didn't have paper and a pen handy. But I did have a plastic lid and a Sharpie on hand. I think I actually picked the lid so I could count out seeds one by one without them flying all over the house.
That did work, to an extent. I still lost a lot. Under the loveseat. In my lap. Sprinkled throughout the living room, to find a home in the vacuum cleaner thanks to Deb being so great about cleaning the house when I was unable to help in any way.
I promised you a total, and here it is: 2,439 seeds. That is not the total total. That is only the total that I was able to count. That number does not include those flung throughout the house, or the even greater number that fell off the plant in the garden itself before I yanked the plant, then a whole mess of them that fell in the process of the yanking. I figured, using a calculator, that that one volunteer cilantro plant started out with approximately 3,658.5 seeds on the fine, lacy branches of the once leafy parsley-like plant. I'm not sure how I got that number. I think I figured that I lost about 1/3 of the seeds. Math has never been my strong suit, especially with Cisplatin clouding my brain at the time of the figuring.
Now, the question (or uestion, when my Q key is not working) is, what in the world will I do with 2,439 coriander seeds? Even with accounting for ones that may not germinate, (isn't there a bible story about mustard seed not growing on rocks, but only in fertile soil? This train of thought brings me there.) I still have the potential to grow around 2,000 little cilantro plants. That's a lot of salsa.
I can freeze some of the herb, but 2000 plants will take up an awful lot of my limited raised-bed garden space. Where will I find room for my tomatoes? Even if I plant everything way too close as I have a tendency to do?
Last summer, I ended up letting about 100 little tomato plants die because I planted so many that I had no more room in the garden for them despite cramming them only about 13 inches apart instead of the requisite 24 inches. I gave away as many of the seedlings as I could (considering that I planted the seeds several weeks late and by the time the seedlings were ready to go into the ground, most people had already bought their tomatoes. They had no idea what delicious delights they missed out on). I don't want to make that same mistake again this year with cilantro, or tomatoes. The one UNrescued brandywine was the biggest, strongest of these neglected seedlings that still had the gumption to grow in tiny starter pots in October.
Sometimes it is hard for me to let go of things. Even one small seed or one weak seedling. I even take about 10 times longer to harvest my worm castings than I need to because I carefully sift through the dirt-like poop and carefully, lovingly pick out each worm cocoon that I find. (In this tiny lemon-shaped pouch 5-10 baby worms wait patiently for the right moment to crawl free. How can I sacrifice them to speed and convenience? Evidently I can save them, but pass over the undigested tomato and pepper seeds and leave them to sprout uninvited in the pot reserved for some green plant left from my mom's or Deb's mom's funeral 7 and 8 years ago respectively.) Every time I harvest that free, beautiful loamy fertilizer, I swear that I am going to be quicker. I swear that I will sacrifice some of those baby worms in order to be more efficient with time and with the completeness of my poop harvest.
It's that time again. It's that time to make that promise to betray those baby worms in order to remove the excrement to keep the living environment safer for the other worms. Can I do it this time? I haven't done much with them since my surgery since bending over hurt so much and the bins are heavy with castings. I couldn't pick up over 10 pounds until 2 weeks ago. They are both so full that they are over 10 pounds worth of poop. I want the casings to have time to dry out a bit before I mix them carefully with seed starting stuff to begin again the cycle of over-planting my garden.
I'm such a bad worm mama. Deb has been keeping an eye on them and she is not even the one dedicated to having them in the house. (For the first 2 years, she wouldn't let me bring them very far into the house. They made it into the entry way, out of the heat and cold extremes, but remained lonely, relegated to the entry way. Now they are lonely because I am a neglectful mama. Yes, I know that I am anthropomorphizing (I'm glad I have spell-check) their little slimy feelings. Can't help it. I sing to my tomatoes too.)
I'm going to sign off now, maybe harvesting a few worm turds before climbing back into bed to try to get some sleep before working tonight.
In case I don't get around to the laptop again, I hope your Christmas and Solstice are awesome. I hope the Chanukah man was good to you as well. Did I forget to mention that St. Nicholas brought me the Old Farmers' Almanac in my stocking? Hmmmmm time to think about planting again? Gotta finish putting the 2007 garden to bed. Gotta plan out our beds better so we are not over buying plants and underutilizing seedlings. Gotta harvest worm poop, pet the cat, wash the dogs, laugh, love, learn.
PS.... the picture at the top is part of this summer's garden. The cilantro was in the next bed over. The greenhouse wasn't covered in snow yet. The plants hadn't become "Jurassic" yet from playing in the horse poop and topsoil. The dog wasn't yet stealing carrots. (Did I mention that anytime in the last few posts? another story from a crazy yellow dog.)
I know that my summer of cancer is going to be one of those memory markers. From now on, I know that I will categorize events in my adult life by whether they occurred "BC" (before cancer), or "AC" (after cancer). I hope I am wrong. I hope that other significant points will help me to remember my early days of cronehood. When I finally finish my undergraduate degree (right now, I am on the 23 year plan), when my goddaughters start their periods, get their drivers' licenses, kiss their first love, graduate from high school. (One memory marker I have in relation to them was when they invented the poop scooping game and the song that accompanies that game.) Again, I think that the pessimistic part of me will choose illness as a memory marker instead of the victory of being cancer free.
Shortly before being diagnosed, I thought that this year's primary memory marker would be my trip to New Orleans. I fell so in love with the people and the city there, I thought I would be altered for life. Now that I've had cancer, I realize that where I live is insignificant. What is significant is living life to the fullest extent possible wherever I am. What is significant is to love as much as I can each day. What is significant is to try to see as many sides of a situation as possible and still make up my own mind about it. What is significant is to know that I am loved and that I love.
Last night was my second shift back at work. It was so great to see everyone again and to know that people cared about how I was doing. I find it interesting though, that when I asked folks what I missed, the typical answer was mainly: "not much". A couple people going to days, a couple of others coming to midnights. A change in duties for some of the higher ups. Like I said, even though those things are important, love and life are the things that really count. Last night One of my co-workers whom I hadn't seen or talked to in 5 1/2 months greeted me not with the question, "how are you doing?" Instead, the first thing he said after "hi" was, "I had a baby while you were gone!" I was tickled that someone else was more excited about his new beautiful baby girl than about my former cancer. One of his memory markers will be the moment that Iris was born. What a beautiful memory to have as a reference point. I hope that their life is full of memory markers focused around joy. I hope that most of us can have more memory markers of joy than of sickness or trauma.
Now that I am cancer free and back to work and only have some small physical discomforts, I have been struggling over whether or not to continue blogging. I was talking with a friend at work about it last night. She reminded me, just as I had written in one of my early entries, that there is so much more to talk about than illness and losing my mind to steroids and hormone insanity. There is my garden, my soon to be starting classes, the books that I read, the people at my church, my animals (of course, always the bed hogs), my partner, my friends, my blessings.
Sometimes gratitude comes automatically, and other days I have to really work on it. I think that it is time to change the path of this labyrinth of words into one of living and loving instead of fearing and hurting. Not that fear and pain aren't parts of living (and loving), but that they are just that, only parts. There are other parts to share. So, I will try to continue to share my fears and pain, but mostly the gratitude, love and excitement that living brings.
Tuesday, December 11, 2007
Because of this painful complication, the Dr. wouldn't sign a release to return to work, nor would she extend my leave. My original paperwork states that the 17th is my last day of leave. She is leaving me no room or time to deal with bureaucracy. I'm not even sure if I should start turning my sleep back around to being awake at night. If I go ahead and flip now, then don't get back to work, it will mess me up. If I wait and see what she says, I won't have any time to get my body ready for the upside-down midnight days.
Deb is once again having trouble with severe abdominal pain and bloody stools. Evidently, she is battling diverticulitis once again. She saw her doctor and got heavy duty antibiotics in a needle in the butt, and also orally. She has been on clear liquids since Friday. Today, she met with a surgeon that she has consulted with on this before. He hadn't wanted to operate before because of her compromised immune system. She's been on gamma globulin for about 2 months sub cue (under the skin with a series of small needles each week), so, if her immune system counts are improved enough, he wants to do surgery to remove the sigmoid (lower) colon, since that is where the worst pain seems to keep recurring. The doctor drew her immune counts last week, but we don't know what they are yet.
Sometimes, it seems like when one thing starts to improve with us, something else screws up.
Thursday, November 15, 2007
Last weekend, I was talking to a friend about the weirdness of having panic attacks. I thought that my first one was the day I had my PICC line inserted, but as she and I were talking, I realized that I had my first panic attack about 20 years ago when I freaked out while doing an obstacle course about 30 feet in the air. I had never been afraid of heights before. Every since, I've had a fear of heights. It's one of those fears that I have been able to control, but not completely overcome. (A couple of years after that first panic attack, I was still terrified of heights, so I went repelling just to prove to myself that I could do it.)
Wednesday, November 7, 2007
As of yesterday, my surgery was two weeks ago. Monday, I actually felt pretty good for the first time since the surgery. I think I over did my activity. Tuesday, I woke up with sore abdominal muscles.
I am realizing that I use my abdominal muscles for everything. Standing up. Sitting up. Rolling over in my sleep. Unreclining the recliner. Pooping. Laying down. Coughing. Laughing. Picking up anything from below chest level. Standing in one place. Shivering. (I've decided that unlike my norm, I'd rather be too warm than too cold because shivering takes my upper and lower abdominal muscles, so I'd rather not risk shivering.)
I have the beginnings of an infection in part of the wound area. Deb discovered it over the weekend, so I have been extra careful in taking care of it. I think it looks better. Deb doesn't. It definitely feels better. The pain is not from the incisional area any more, it is only from the muscles around it.
I am not as tired all the time now, I don't know if it's because I hardly ever take the Narco now, or if my body is healing better, making me less tired. Either way, I can't decide if it's better because I'm not falling asleep all the time, or worse because I am more bored. I know I'm not walking as much as I should, but I have done some. I've been cooking a little here and there, washing dishes, even doing laundry, one piece put in the washer at a time, with Deb carrying the baskets upstairs for me.
Annie and Ellen want to plant a "Victory Garden" for me since I am officially cancer free. There is an area out front that Ryan is supposed to remove sod from so it can be used for that. Hopefully, he will finish it before the ground freezes.
Deb has been working outside in the cold today, finishing pulling out the dead tomato plants, shredding the leaves with the riding mower, etc. I have been able to use a reacher to place newspapers on the empty raised beds and spread straw over them so that the beds will be already mulched for next year's plantings. This is the first time we've tried this. Hopefully it will work the way we hope it will.
Monday, October 29, 2007
I called Deb and of course, she had just fought obnoxious traffic and had finally arrived at the hotel just as I called her. She got back in the truck and came back to the hospital to get me. I made my escape around 8:30pm Friday night.We spent Friday night and half of Saturday night at the hotel in
We came home in the middle of the night because the alarm company called and left a message on my cell phone at 1am saying that they called the police because our alarm had sounded and no one was answering the phone. We got home around 3 or 3:30 am and everything was fine, except our phone and internet connection was messed up. And our front door knob was loose, like someone had jiggled it hard enough to make it loose.
So, last night I locked the deadbolt in addition to the regular lock and now that won't unlock. I'm kind of trapped here, except to go into the backyard and around through the gate and out. We will be calling a locksmith to get it all looked at.
I am still moving slowly. I am still wearing the abdominal binder much of the time. I'm alternating between Ibuprofen and narcotics for pain relief. I keep forgetting to take them before the pain gets really bad. Part of the reason is that sometimes the pain level is fine for 6-10 hours, then all of a sudden, it jumps up. (Or, maybe it inches up and I don't notice it until it is bad, I'm not sure.) I still can't figure out why Vicadin (or Narco) is a big street drug. It doesn't make me high in the least. It barely even makes me tired. Nothing. I do notice that I am in somewhat less pain 30-40 minutes after taking it, but that is it. Having said that, I still probably take it too far and few between because I am paranoid about becoming addicted to it.
Even though Deb does most of the housework, I am getting fidgety because I'm supposed to limit my activity very strictly for 6 weeks after my surgery (5 weeks now) and I can't even take the trash out to the garage. It hurts to bend over, and I don't want to pop the stitches, so if I drop something or if there is something on the floor that needs to be put away, it is hard (or sometimes not feasible) for me to take care of it. I feel lazy.
Thursday, October 25, 2007
Last night, I fell asleep, but then woke up in a panic attack. I felt trapped like a rat. I kept getting those cramps so I couldn't even sleep on my side as I like to. I had both legs attached to the bed by air hoses that filled and deflated "boots" on my calves in order to prevent blood clots in my legs. I had an oxygen canula in my nose, which attached to the wall. I had a pulsOx monitor stuck to my finger to monitor my oxygen levels. I had an IV sticking out of the port in my chest. I had a wire leading from the pca unit to distribute narcotics to me at the touch of a finger. I had the nurse call light/tv controller at the end of a wire running from the wall to my bed. I had a tube sticking out of my urethra to catch my pee and another one from the wound to catch the drainage. I WAS trapped like a rat. I kept getting tangled up in all those tubes and wires, along with my blankets and I just started freaking out. I ripped off the "boots" and pulled off the pulse ox monitor since I couldn't find the call light that I was sitting on. I let the nurse know that I did that on purpose because I couldn't find the call light. I started to cry when I was telling her that I was freaking out. Of course crying sent me out of this world with pain because of the abdominal cramps. A binder finally came for me.
They got me bound, which sounds like it would feel more confining, but the pain relief was almost instant. They untangled my blankets and encouraged me to put the "boots" back on. They gave me Ativan to calm me down. (I let the Dr. know that I'm afraid of Ativan because when the doctors gave it to my mom, she never woke up again. I explained that I know that she was a geriatric patient and that I know that my fears are unfounded, but they are there. I did allow them to give it to me because anything is better than the panic that I was experiencing.) I was able to roll over on my side with the binder on. I still had some pain, but not too much. I only used the pca once or twice after that.
First thing this morning, around 5:30am, the Doctor pulled my catheter. A few hours later, they pulled my IV fluids and pca pump once they knew that I could tolerate solid foods. Since I hadn't used any narcotics in several hours, we started me on just Motrin for the pain. That lasted for a few hours, but then I started having more pain. And nausea. They gave me Phenigren through my port for the nausea and Narco by mouth for the pain. They both helped, but I was knocked out for several hours. One of my nieces visited me and I was totally out of it, not able to hold a decent conversation or create much of a cohesive thought even. I felt bad.
Finally, after several hours, I was able to wake up. So I walked down here to the isolation area to get on the internet and write on this blog. I am still quite groggy, but they kept telling me that I needed to walk as much as possible. They still want me to fart before I leave.
Monday, October 22, 2007
I have to start taking GoLytly this afternoon. I'm looking forward to spending my evening on the toilet.
Deb will be there during my surgery tomorrow. My sister, Mig will stop in for a while also. My friend, Annie, will also be with her during much of the day. Deb will be staying in Ann Arbor until at least Thursday, depending upon when I am released.
Once I am admitted to the 8th floor, I know that there is a room where I can access the internet. If I feel up to it, I may try to write on the blog from there. I'll see how I feel.
This morning, Deb is at her Dr. office, getting her twice weekly infusion of vitamins and minerals. I am watching a young friend who is home from school today. He broke his leg yesterday.
Well, I'm going to sign off for now. See you on the other side.
Wednesday, October 10, 2007
Well, he said that my vision is 20/25. He also said that my retinas look "beautiful", no diabetic retinopathy or other retinal changes. He said that I have SDT (I think), which basically means that my eyes are too dry and that that is why I am having blurred vision. He said for me to use lube for my eyes. (Not like KY, like lubricating drops.) He gave me a sample. I've used them once so far, but haven't noticed any difference.
I can't figure out why my eyes are dry, I seem to have no problem tearing up when I'm emotional. One interesting thing that he said is that more women than men have this happen. He said it is a 5:1 ratio. I wonder why that is. He also said that since it seems to be caused by the chemo for me, it should be temporary. He said to come back in if the drops don't help or if it doesn't get better after a month or so.
I haven't seen this particular doctor before. He is quite a character. Deb and I decided that if he ever needs a second job, he could either be an auctioneer or a comedian. He is very professional, but also outgoing and funny. He dictated the report for my doctor into his recorder and he spoke so fast, I almost couldn't understand much of what he said. That is why auctioneer would be a good second job for him. He kind of reminded me of Jim Carey.
Tuesday, October 9, 2007
I go to see the eye doctor at 8:10 tomorrow morning. Hopefully, it is nothing. Up until now, every eye exam that I have had has actually come out better than the one before. I first got reading glasses in seventh grade. In high school, my prescription was weaker. In my 20s, my scrip became even weaker. The last time, about a year and a half ago, the doctor said that I didn't really even need glasses anymore. I thought it was funny because the closer I got to the age of 40, the better my vision became. For most people, the opposite is true. Now, I'm 5 months from 40 and my eyes are worse than ever.
Working on what I was going to say, and reading back throught the journal that I kept, made me fall in love with New Orleans all over again. I was supposed to read some of my journal entries, but instead I took a few of my entries from that journal, and mixed them in with childhood memories and reflections of a recent anti-racism workshop that I went to.
The following is what I said:
I grew up hearing the story of the first time my dad met Louis Armstrong. Pops took my Pop under his wing and suckered him into making his first public appearance. Because of this, I have always held Armstrong in my heart as a hero. One of my dreams, since I was little, was to go to New Orleans to see the place that created such an incredible musician and generous human being.
Unfortunately, I didn’t make it before hurricanes Katrina and Rita devastated much of New Orleans.
I was, however, honored to be able to experience this incredible place through volunteering this year with others from the UU Church of Flint. I soaked up the jazz from the French Quarter in through my pores at night and I sweated the devastation and anger out through my pores in the daytime heat.
I fell in love with New Orleans just as deeply as I fall in love with Louis Armstrong each time I hear his grainy voice sing to me through my stereo speakers.
Although some people criticized “Satchmo”, saying that he played as an “Uncle Tom” to white audiences, Armstrong fought racism quietly. He donated much of his money to anti-racism activists such as Martin Luther King Jr. He treated people as his equals, including a scared white kid during the early 1950s. Armstrong even refused to play in his beloved New Orleans for many years because of the segregation there, returning only to play in 1965 after the Civil Rights Act was passed.
As soon as we got settled in to our temporary home at the First Unitarian Universalist Church of New Orleans, several of us took off to the French Quarter. We were led by our new friend and guide, Gabe, who had been volunteering in New Orleans for about a month and a half. We were headed to a bar called “The Spotted Cat”.
Once we got to Frenchman Street, kitty corner to “The Spotted Cat”, a brass band was playing outside to a crowd of one or two hundred people dancing… on cars, in the back of pick up trucks, on sidewalks and in the middle of the street. It was incredible.
As I watched and listened to the brass band work the crowd, I looked around at that crowd. Black folks and white folks were dancing, drinking, and singing together while these very talented young black men rivaled the angels in heaven on their horns. I kept wishing that Louis Armstrong could have been here to see this mix of humanity that he dreamed would come together. I wondered if he would have finally come home after the hurricanes came to devastate the area.
When I talked to people in the quarter, at the Rebuilding Together warehouse, and at the church where we were staying, I learned that there is so much more to New Orleans than jazz and delicious food. I learned that, even though much of the city is segregated, no matter the color of their skin, the people there seem to genuinely care about one another. Neighbors look out for one another, especially the young and the elderly. Something that I heard about again and again was that people were doing everything they could to help their neighbors rebuild and get home while they themselves were still living in FEMA trailers and hadn’t been allowed to enter their own homes for months.
That got me to wondering if people would look out for each other that way here in Flint if a tornado were to strike and devastate our area.
I don’t know.
The segregation in Flint breaks my heart, much like Satchmo’s heart was broken by the segregation of the New Orleans that he grew up in.
A few weeks ago, I attended a workshop here, at the Flint UU, in the chapel. The workshop was run by the cast of the play called “Truth in Translation”, which is about the truth and reconciliation process in South Africa.
I mention this because I believe that Flint, New Orleans and South Africa have a lot in common. All three places are struggling with issues of poverty and prejudice. All three are striving to evolve past segregation toward integration.
New Orleans, for many years, lost a most beloved son, Louis Armstrong, due to the people of that city being too willing to allow the status quo of inequality rule their everyday lives. South Africa, for years, instituted legalized racism resulting in hatred and misunderstanding between people of different skin tones. Flint has maintained an atmosphere of quiet segregation without very many questioning the inequalities.
For each of these places, speaking truth to prejudice has been- and still is- necessary in order to remind ourselves of the inherent worth and dignity of every human being.
Through my dad’s experience with Louis Armstrong, the lesson I learned is that a person is a person no matter the color of their skin, their rank, experience, talent or their material possessions. Satchmo could have left corporal Loubert to face the wrath of his commanding officer when he gave in to cowardice and failed to execute his orders to introduce Louis Armstrong to a bunch of loud, rowdy soldiers. Instead, he treated my dad with dignity and compassion. Satchmo put his arm around him. Talked soothingly to him, then basically pushed him out on stage where he had little choice but to speak.
Louis Armstrong was wise enough to listen to what my dad believed his own limitations were. Then he pushed my dad to go above and beyond what he thought himself capable of.
After going to New Orleans and experiencing the show and workshop of “Truth in Translation”, I have to ask myself: what part do I play in listening to what the people of Flint believe to be our limitations as a community. And: how can I help to push this place into going above and beyond what we think we are capable of.
After my doctor visit, I went to the 8th floor of the hospital to visit a friend of ours who has been in the hospital for a month. We had a very good visit. She had some very powerful insights in how to visit someone in the hospital, including intention, consideration of patient's needs, empowerment strategies and so much more. I'm hoping that she will compile these ideas into a book when she feels stronger.
Once leaving her, we met our niece for chinese food at Middle Kingdom. I am so proud of this kid, I can't wait to see who she becomes. I am proud of all of my nieces and nephews, they are each so unique.
After leaving Ann Arbor, we went to a friend's house and drmmed and ate dinner.
I must say that even though today began with a doctor visit (unforfunately, including yet another pelvic exam), and continued in the hospital, overall it was a very good day. I love making meaningful connections with people, and I feel like I did that several times over. I feel peaceful and grateful to have such awesome people in my life.
Monday, October 1, 2007
I'm glad that she went in to the hospital here instead of getting to Cross Village, then deciding to go. One doctor said that if she had waited much longer, she would probably have ended up with an abscess in her colon. As it is, they caught it before it reached that point. Inflamed, yes. Painful, yes. Infected, yes. With her immune system, waiting much longer would have been much more serious.
Friday night, I went to a friend's house for dinner and conversation. We had a fire in her chimenea on her back deck. We kept pretending that we were around the fire pit up north, saying "shhhh, do you hear that bear?!!" and "look out, I hear wolves!"
If they spring her tomorrow, we can still go up north for a few days. Keep your toes crossed!
Sunday, September 23, 2007
Even though in my last post, said that it may take a while for the effects of the chemo and radiation to wear off, in my heart, I think I believed that I should be totally done with all of that by now. Because the steroids make me a crazy, emotional mess, I figured that since I only had a half dose of chemo this week, that I could stop the steroids earlier than the 3 days after chemo that I normally am supposed to take them. Well, I'm not sure if it was stopping the steroids early, or if it was some weird cumulative effect, but yesterday and the day before, I had a weird, shakey feeling for most of the day. It felt kind of like being nauseated, except not just in my stomach. I felt wobbly in my stomach, legs and arms. There were moments when my hands and arms were visibly shaking as well, but only for short bursts at a time. I went ahead and took one of the steroids last night and again today. I feel better today, but still a little shakey/wobbly when I do too much (like paint the ceiling in the office). I almost recycled my dinner a couple of times, but then I was okay after sitting quietly in the garden killing mosquitos for a half hour or so.
I'm going pretty stir crazy here. I'm not working and not taking classes. Mostly, I'm sitting on my butt doing nothing in between doctor's appointments. Yesterday, I went grocery shopping and was completely exhausted by the time I was done. It's weird, I get so tired so fast. When I get too tired, I get nauseated. This last chemo was only a half dose because I only had 3 radiation treatments this (last) week rather than 5 like usual. Of course, I tried to be an almost normal person and I'm exhausted.
Of course, I am also still experiencing what is (not so fondly) refered to as "chemo brain". That is basically when even the simplest words and concepts are unreachable at times. Like yesterday, I was trying to explain something to Ryan. I couldn't think of the words I needed (I think they were "ladder", and "garage"). Luckily, he figured out what I was saying as easily as me saying "um, you know, if you need a ...... um, thing..... it's um, in the aaahhhh" and pointing toward the garage. For someone who talks a lot, not having words is frustrating. (I can't remember if that was the particular conversation where my words quit and his brain kicked in, but it was near the same time as that conversation.)
It may sound crazy, but I'm missing work. I have enjoyed working in my garden, but again, I've had to do it in small incriments. Luckily, I have a bench out there to sit on when I start getting nauseated or winded. This is so weird. I've never felt weak physically like this before in my life. I don't like it at all. Some of the people I've met through the hours waiting in waiting rooms or sitting in the infusion rooms have had such obvious bad effects, liver problems, skin burns & peeling, extreme pain. Comparitively, my side effects are so minimal that I feel like I should be fine doing and acting and working like a regular person (or at least like myself). I feel almost guilty, but I know that I have to give my body a chance to heal. I just get impatient with the process. I feel like a wooss (I have no idea how to spell that word.).
Wednesday, September 19, 2007
Now, I have a few weeks to let the effects of the chemo and radiation wear off before they do surgery. My hysterectamy is scheduled for October 23. I assume the only thing that will change that is if my pre-op testing doesn't go well. I've got an appointment at U of M on October 8 to go over all that stuff and probably do the testing that day as well.
I feel like I can finally see the light at the end of this twisted tunnel that I've been in. The two parts of my treatment that scared me most will be over this week. The surgery is around the corner. I view this journey as halfway over, but the transforming effects on my life have set me in some ways on an unending branch of self reflection, regret and self discovery that I wouldn't otherwise have tread.
One question that I keep getting is "when will you know if the chemo and radiation are working?" The answer is that I'm not sure. I believe that I'll know once the pathology report is in, after my surgery. That is when I should also know for sure if I have cervical cancer or uterine cancer. My gut instinct tells me that I probably have uterine cancer, but that it has not progressed very far and that once all this is done, I'll be done with it.
Hopefully, my instincts are correct (or that I am overreacting and it may be just cervical after all). Usually my instincts are right on. But, being an Aries, my emotions and instincts are usually tempered by my intellect as well. So, I am maintaining hope with an edge of skepticism until I hear the all clear from the medical powers that be.
Sunday, September 16, 2007
Then, I am done with doctors for two whole weeks. (Although I'm supposed to have a follow-up with my GP about something or other, but I'm thinking why bother until all this blows over. I think it has to do with my blood sugars which have been high due to the chemo and steroids associated with it. I don't really want to find out what my 3 month average has been when for much of that time, I know that it has been artificially inflated because of the chemo. I want to give the effects more time to wear off before I do that test. I don't know, maybe I'll go, but do I really want to find out something else is even more wrong than I thought?) I go back to U of M on October 8 for a pre-surgery consult. I assume they will get more bloodwork, and to the usual pre-surgery stuff on that day. The hysterectamy should be October 23, assuming nothing else goes hinky.
Between my cancer treatments and Deb's health heading even further south, we are at one doctor or another between us, pretty much every day of the weekday these days. So, we are planning on taking a trip up north for a few days (maybe up to a week) just to get away. My last apointment with my chemo doc is on September 28 in the morning. We are hoping to leave right after that. She will take some time off of getting her infusions and we will just go relax, visit family and listen to the wind blow in the changing leaves.
The day of my first ever chemo treatment, I started to get hot flashes. Only generally one or two that day.
This time, I went to chemo, did a few things around the house, got nauseated (threw up a little, not much), ate dinner and then went to the Whiting Center to see a show called "Truth in Translation" about the Truth and Reconcilliation Commission Process in South Africa after Apeirteid was abolished. (This was a very powerful experience for me, I'll write about it tomorrow or the next day since I already took my sleeping pill and I'm starting to fade.) Anyway, I was sitting in Whiting, dripping in sweat. I finally turned to my friend, John, whom I was sitting next to, and I asked him if it is hot or if I'm having a hot flash. He said it must be a hot flash. Well, that was three days ago, and I'm still running outside to cool off in that early fall chill that is happening because my internal thermometer has done gone crazy. I think menepause may have finally hit between the chemo and the last of the internal radiation. Whew.
Sorry I've been remiss on keeping up the blog, I've got a lot written in my head, just not on the computer. I'll try to catch up soon.:)
Monday, September 10, 2007
Today, I managed the pain a little differently. I took 800mg of ibuprophine beforehand and had them give me half the amount of morphine then they did last week. The doctor did a much better job today of getting the hardware in place. He didn't catch any skin at all, so I didn't have to yell at him. I did have a lot of cramping, but that is to be expected and it stayed at a managable level. Had a slight headache this time, but nothing too major.
I don't know if it's because I had a lower level of narcotic in my bloodstream or not, but when the radiation was activated, I could feel it more than the other times. I'm not sure how to describe the sensation. Before, it just felt like a little bit of a vibration as the "seeds" (metal chain with beads that are radioactive) were fed into my cervix. This time, it felt warm, bordering on hot for a few seconds at a time. There were also moments where it almost felt like I was wetting myself (which, with a catheter in can't be done). It also at times felt in my privates almost like when you put your tongue on a 9 volt battery, but not as intense. None of these things exactly describe what it felt like, but hopefully, it at least gives a suggestion of it. Like I said, it felt very different today, I made an even more determined effort to be more aware of what was happening. As I was laying there feeling all this stuff, I was moving words and ideas through my mind to see if I could match up words with the sensations, but as I said, nothing matched exactly even during the experience. I also was able to relax my muscles better so that when the doc hooked up the erector set, it was easier to place it.
Because of all of the irritation from the treatments, I appear to have some sort of infection with itching, burning and discharge. I think it's a yeast infection. The doctor gave me a prescription for it. I'll see if it works. Whatever it is, it's really annoying.
After today's radiation, I felt totally sapped out. For the short 3 mile ride home, I had a hard time staying awake. It amazed me how exhausted I was. I came home and slept for about 4 hours straight, sleeping through most of the residual cramping that occurs after each treatment.
I go back tomorrow for my 5th internal treatment, then Thursday for my last one. My last series of external radiation begins on Friday. I guess they are going to be using a similar field to the first 20 external treatments, but focusing more on the lymph nodes this time, to make sure any cancer in there is fried if there is any.
The nurse asked if I had still been having periods when this whole thing began. I explained that I was, and that during the external radiation, it stopped then restarted a week and a half later, and now seems to be done. I told her I figure my eggs are pretty well fried by now. I know that sounds kind of callous, but if I don't joke about it, the mourning of not being a mom may come back again, so that is part of my way of coping with that. There is no turning back now.
I am finding lately that my thought processes are much slower than normal. I feel like when I am talking to people, like my words are coming slower and I'm having trouble finding the right words sometimes. The technical word for this is "chemo brain". This slowness in my brain also makes it hard for me to read much and comprehend what I see in print. I get this from only having the chemo once a week. I can't imagine how out of it I would be if I had chemo more than one day of chemo a week like so many of the others that I have met. I'm not sure how long it takes for chemo brain to wear off once the treatments are done. I know that there doesn't seem to be any letting up of it between, so I figure it has to be at least a few weeks. I even felt it for those couple of weeks that I didn't have chemo because of the PICC infection.
Wednesday, September 5, 2007
I like to sit in the larger area. It is less intimate, but I get to talk to more people there. (Me, talk, NO WAY!! I'm quiet as a mouse and never talk to strangers!! It must really be Deb who likes to talk nope, nope, not me no way no how, never, not a peep...) Usually, in this larger space, there is some lively conversation going on. The small rooms are good too, but you aren't always assured good conversation because of the limited space for varied personalities to fit. I bring a book to read during the 4-5 hour infusion, but with the cocktail of meds on board, sometimes it is hard for me to concentrate on written words. Also, my vision weirds out from my blood sugar elevating due to the steroids. So actually, when reading is just too difficult, conversation helps to pass the time. It's really not just an excuse to hear myself talk. Sitting and staring or meditating is good for a while, but not as an all day activity.
The conversations are always interesting and I really love to hear other people's stories of their lives and their own experiences with cancer. I'm not the type of person to seek out one of those cancer support groups, but sometimes hearing someone else's story and helping each other find solutions to common problems like nausea, fear management, transportation issues, and bad veins helps to put one's own situation into perspective. Each time I meet someone new or hear someone's story for the first time, my gratitude is renewed for the miracle of them finding my cancer early, having an incredible support system, having good insurance and a car, being able to rant in my journal, with those I love and on this blog.
Today, our conversation ranged from interesting tomato varieties to dogs to inoperable cancers, chemo effects, disappearing spots in the lung and internal radiation. I was able to help a woman deal with the fears related to the unknown in regards to the internal radiation that she was due to start this afternoon. All I did for her was to describe step by step and feeling by feeling what I experienced yesterday in order to demystify the experience for her. She has a different radiation doc than me, but it sounds like my experience of not being told ahead of time what to expect is not out of the ordinary.
What I don't understand is why doctors seem to think that ignorance of a procedure is the best way to proceed with patients. I don't understand how they are so totally clueless about their patients' basic human need to know what to expect in order to better deal wtih the situation. Now, I'm not talking about necessarily telling them in gory detail every little thing that can go wrong at every step of the way. (Quite the contrary, an average experience description would be very helpful in order to allay fears.) I'm talking about taking an extra 5 minutes to explain the basic procedure, then attentively listening and encouraging their questions. Not everyone has a partner like Deb who knows exactly what questions to ask when and in medical terms which she later does an awesome job of translating into English for me. And, not everyone obsesses over their questions the way I do, usually keeping the majority of them in the forefront of mybrain simply because of obsessive neurotic fears. Most people need a minute to process information in order to know the correct questions to ask. Too often, Doctors are busy looking at their watches or anticipating what they think your questions and fears are instead of listening to what they REALLY ARE. Instead of empowering their patients with the knowledge that they need and want, they desempower them by feeding them what they THINK their patients want to hear.
Hope walks a precarious line between seeking knowledge and being fed clean, pat answers. It is up to the patient and the doctor to find that line together.
Tuesday, September 4, 2007
It got started late due to the Doctor returning late from his vacation, but once it did get started, it wasn't as bad as I'd imagined or heard.
The radiation itself didn't hurt, I just felt some vibrating of a cable on and off during the treatment. The treatment itself only took 397 seconds. The preparation before that took over an hour.
First, I got 10 mg of Morphine. (Once again, I marvel at how morphine doesn't do a darn thing to stop pain. It just seems to take the edge off the worst of the anxiety. I can't for the life of me figure out why someone would find it addictive. For me it felt similar to about 2 shots of bourbon.) The nurse allowed Deb to be the one to access my port for the Morphine. She did such a good job that I didn't even feel it, except a slight pressure.
Then, I had a catheter inserted in order to ensure that my bladder stayed empty throughout the procedure. It stung a little, but not bad. The other thing that having the catheter did was that it allowed them to see exactly where my bladder was on the CT scan used to check the positioning of all the hardware that they rigged me up with.
After the nurse inserted the catheter, the doctor came in.
The doctor began by inserting a speculum without warning or any sense of how a woman's body can adapt to prevent pain to itself. Needless to say, even that simple procedure involved some measure of pain. (If anyone asks, I think if the doc was either a woman or a man who has had prostate problems, this procedure would not have involved much pain at all, instead of a painful, frustrating series of invasions slightly mitigated by morphine.) After the speculum, I felt a couple of other things go inside, involving much cramping and pressure. Evidently, I kept tightening my muscles because he kept telling me to keep my hips on the table and not to lift them and to relax. Well, that all was pretty unrealistic to expect. He did allow me a few minutes to relax my muscles at one point because he finally realized (after I said my legs were shaking from tightening up so much) that no amount of verbal coaxing was going to get me to relax. Finally, after a few minutes, I was ready to go on.
I'm not sure what everything looked like, or what it was called, but later, Deb described it as looking like an "erector set" or like a "microphone stand" coming out from between my legs. (Deb was allowed to watch the procedure because she is a nurse and she knows how to stay out of the way.)
Once the erector set was in place, they attached it to a board on which they had me placed, so that none of the equipment or my pelvis could move. Then they took x-rays to check the placement and transfered me to a gurney and took me to the CT scanner. Now, let me say this about that ride: humiliation and pain. Humiliating because, here I was unable to move in any meaningful way (I could move my feet and my arms, legs and head, but not really my torso at all), with an erector set sticking out from between my legs, lightly covered with a sheet and being wheeled out into the hallway in front of everyone in the waiting room and all the hallways. Painful because each time the gurney jiggled, the erector set was jiggled and everything inside of me cramped up even worse. (Who woulda thought that jostling my shoulder with the armrail would create pain in my privates!) Once the CT was finally done, the CT tech zoomed the bed part out of the doghnut part of the CT machine and it was kind of like taking a spider with it's legs tied up, supergluing it on its back to the roof of a matchbox car, with painful equipment strategically placed inside it, then pushing the matchbox car really hard until it smashed into a wall to stop. I swore at the tech and told her that hurt. It was very painful because when the bed part bashed against the automatic stop (instead of her guiding it to an easy stop), the entire erector set felt like it was jammed even further inside of my uterus. It took a good ten minutes for that particular pain to ease up at all, in addition to the cramping and pressure I was already experiencing.
The worst part of the whole thing was that the Doctor seems to have absolutely no idea of how painful it can be for a woman to have large foreign objects....Anyway, he has absolutely no finesse. If he had at least given me a verbal warning or description of what he was doing, I wouldn't have tensed up my muscles, which made his job more difficult. Also, if he had moved slower instead of cramming the whachumacaullits into place, my body could have adjusted easier and it wouldn't have been as painful. Then, when he snapped two of the different whachamucaulits together, he caught either a piece of my skin or a hair in the way. It took a few minutes before he finally listened to what I was saying and made sure that my skin was out of the vice. (I didn't think of it until talking to a friend later, but I kind of wish I had thought to tell him that if he wanted to know what it felt like, I'd be glad to pinch his foreskin between two of my ragged fingernails so that he could understand.)
So, over all, the experience wasn't nearly as bad as I had expected. And I only have to go through it five more times.
Tuesday, August 28, 2007
My eyes are also feeling pretty weird lately. My eyes feel tired. I'm not sure how else to explain it, except that they feel strained and like they want to rest. Closing my eyes doesn't help this feeling. My vision is almost as if I am looking through slightly imperfect glass, not enough to impare my vision, but enough to let me know that my eyes are tired.
A few hours ago, after my last entry (Eggplant, Tomatoes and Basil...Oh My), I went out to the garden to commune with the bugs, weeds and intentional plants. In early spring, a cilantro plant had voluntarily sprung up in one of the raised beds. I intentionally let it go to seed so that I could could harvest the seed to use as corriander (which I rarely use), but especially so that I could plant it again later to use the yummy leaves in homemade salsa and other tasty treats. (Deb and I found that Cilantro freezes very well and can be used in the dead of winter as a lovely addition to chicken enchilada casserole and other goodies.) I stripped about 2/3 of the seeds from the plant, intentionally sprinkled some in an unused area of one of the veggie beds, and accidentally dropped about 1/4 of the seeds from the plant onto the ground below it. The rest of the seed couldn't fit into the small 2" peat pot that I had grabbed as a containter. Just for kicks, I decided to count the number of seeds that I harvested. I've gotten a little ways into the counting process, but the tiredness of my eyes dictated that I stop for now. I'll let you know later what the results were and why I am so fascinated by them.
I was very tired today after chemo, so I came home, watched tv, then took a nap for about 3 hours. And felt better.
For dinner, I had cottage cheese topped with the most unique tomato I have ever tasted. Our friends, Dolores and Walt, had given us a few plants of an heirloom tomato called "Peach", or something like that. It is a yellow tomato, that when fully ripe, is colored like a peach, with salmon/peach colored streaks running through it. The taste was full and rich and ... sweet. Wow, I've never tasted anything quite like it. It was great. I saved some of the seeds from it and hope to grow some more next year. I think the sweet, low acid taste would be great in spaghetti sauce or other similar dish. It may be a little too sweet for soup, but combined with Brandywines or Jubilees, would probably make a lovely soup or yellow marinara sauce.
My tomatoes are starting to finally ripen. After relying on friends for my favorite summertime treat for the past few weeks, my garden is finally starting to give up the delicious ripe tomato flesh. Mostly Jubilees (more yellow, less orange than usual-what is with that?) and Brandywines. Most of the others are still languishing in small pots from when I planted them from seeds and got lazy and depressed and didn't finish planting them in their intended permanent homes. I may plant some of them into large pots to see if I can grow them inside later to have fresh tomatoes later in the year than normal for Michigan. I can't bear to buy tomatoes in the winter. They taste bad to me. No flavor, texture like water-soaked balsa wood and no personality to speak of. As "my kids" would say about someone who is only pretending to be a decent human being, but not really, "they are fake". Even though that isn't always an accurate portrayal of a person, I can pretty much unequivocally say that it is true about a winter tomato in the grocery store. (I will add a small bow here to select types of small, bite-sized tomatoes such as grape tomatoes and santa sweets, which in desperation, can almost pass for having a limited amount of tomato flavor, but really at that time of year, I hate to say it, but canned, frozen or dried are preferable most of the time and never as a big thick slice on a turkey sandwich.) Anyway, for now, until a hard frost hits, I get to enjoy my favorite summer treat and delight as the fresh tomato juice runs down my face, and up my arms to my elbows.
By basil is also flourishing. I need to buckle down and make some pesto this year. Every year I say I am going to do that and I don't and much of my favorite herb goes to waste. I may also just try cutting and freezing it this year. Anyone have any ideas on this? Dry basil tastes good, but there is something about the taste of fresh basil that completely livens and wakes up the taste of a dish.
I need to go out to the garden now, before the sun goes down and peek at my peppers to see how they are doing, and check on my young sage plants that hopefully will last for a few years. And I need to talk and sing to the other plants that are so generous in their beauty and their bounty.
Monday, August 27, 2007
When I woke up this morning, I realized that I probably need to clarify some of my terminology since much of my language is colored with my fears and neurosis about this whole process...
What I so flippantly refer to as cauterization is actually internal radiation treatments which will be conducted through the stint in my cervix that was surgically implanted on Friday. The actual term for this is "brachytherapy". The reason why I call it being cauterized is that from what I have read about the side effects, they are very much like being burned from the inside out. There will likely be major scarring, with probably some long-term or permanent side affects from this. So, technically, the term is brachytherapy or internal radiation rather than cauterization. My fear speaks out of turn sometimes.
Friday, after the implant I was in a lot of pain. I slept most of the day, thanks to pain pills which didn't really take care of the pain (like mega-serious menstral cramps) but which allowed me to sleep through the worst of the pain. There was still a lot of pain at times on Saturday, but not nearly as much.
Friday, Saturday and Sunday, during the times that I was awake, I was struggling to not throw up. Even though my chemo was on Wednesday and I felt okay Wednesday and Thursday, the nausea seems to be a delayed effect on me much of the time. Today, so far, the nausea is very minimal.
I am still lucky in that even though I struggle with nausea much of the time, the only time I have actually thrown up was when I was running 102 fever with my PICC line infection.
My Medport site still is sore and starting to itch. I'm assuming that is a good thing because it means that it is starting to heal. The bruising is starting to lighten up a little. It's kind of weird when I touch the spot, I can feel a hard foreign object under my wiggly skin and the small indent where the chemo needle goes. It pulls some when I sleep on my right side or reach over my head, and that makes me a little nervous about whether or not the stitches will hold it in place, but I know I will get over it. One of my friends told me that it only hurts about a week, then it is like it is a part of your body. It kind of reminds me of some weird science fiction movie where people have secret micro chips imbedded under their skin by aliens or by the government or by the alien influenced government.
I think I'm watching too much tv in these lazy days of not going to work. Going a little stir crazy. Working on trying to get the office ready to paint.
Friday, August 24, 2007
Wednesday, August 22, 2007
A mediport is a thing implanted under the skin in the chest with a tube running into a large vein in the chest. So, the chemo nurses can access it with a needle that is shaped into a 90 degree angle by just poking through the skin. No tubes hanging out of my arm for access and no IVs needing to be started regularly. They should be able to use my port when I get my hysterectamy as well.
When I got to the radiology place this morning, I made sure that they knew that I had a lot of anxiety about the procedure. They made sure I had Morphine and Versaid. I still felt the lidocaine shot, but once that was done, it went fairly well. The first site didn't work, but the second site worked. Now it looks like I have a really bad hickie on my neck where the first attempt was made. I am sore inside and out in that area, where it is swollen from the trauma of the procedure. But, now that the port is in, that is one less area of anxiety.
That is the main source of my anxiety with this whole thing. Just not knowing what the next step is going to be like. Each new thing is scary, but then as it happens, the anxiety eases up.
My anxiety about the internal radiation is still there. But, I know that other women have gone through it. Some have permanent side affects, some only have temporary side effects. So, keeping that in perspective, I'm trying to keep my fear in perspective.
Also helping me to keep my fear in perspective, is a conversation that I had with my sister, Mig, the other day. She reminded me that all these treatments and cancer scary stuff is only temporary. She reminded me that as long as I keep my faith and look past the present that I'll be able to get through all of this.
I also keep reminding myself that what I'm going through is minor compared to what so many of the other people that I'm meeting in waiting rooms and chemo rooms are going through. I know that I can't compare my pain to another's, but I can be grateful for the fact that I have an incredible support system. I can be grateful for the fact that my cancer is most likely in the very early stages. And, ultimately, I can be grateful that I am not going through some of the major complications and multiple battles with cancer.
So, as I peek around the corner toward Friday, I try to keep perspective about what I've already gone through and try to keep my fear to a managable level.
Thank you to all of you who have been so great about showing your support to me through this journey I am on.
Sunday, August 19, 2007
Then, Friday, I go to the hospital to have a stint inserted into my cervix so that the internal radiation can start. The stint will be a tube shaped piece that will keep my cervix open so that the radiation can get inside (I think a wire is inserted for the treatments). I will get 6 internal treatments. The radiation doc said that the first time, they will give me morphine. Gee, that made me feel better (NOT). I'm guessing that it will be even worse than I imagined if they have to give me morphine. These 6 treatments will probably take about 2 weeks to complete. The radiation doc said that the first one is the worst and that the second one isn't as bad, the third and fourth are less painful and by the time I'm done, the last ones are "a piece of cake". Yeah, like I believe that. It's easy for him to say, he isn't the one getting cauterized from the inside out.
But for now, I don't have any nausea because I'm off of the antibiotics and chemo. I don't have any wires or tubes sticking out from my arm, so essentially I'm free for the next few days to live an almost normal life. Tomorrow, Deb and I are going to Grand Rapids to visit a friend. Monday, I'm going to another friend's to drum. So, for now, I feel like a regular human being, but I miss work (surprise). I'm having to find ways to entertain myself for now. The dogs and cats are helpful in that regard.