Saturday, February 28, 2009
Today is the anniversary of my hysterectomy. Scott said maybe I should prank call my surgeon. (who is ranked among the top gyn/oncologists in the nation and works at the hospital that I don't go to anymore - which I won't name because I could get in trouble.)
Instead of making any prank calls, I thought I'd post an excerpt from my journal that I wrote last year. It is not a pretty journal entry, but it is my story. And I feel like I should tell it. If you don't like stories of post op surgery, this might not be for you.
Surgery February 2008My naturopath gave me some advice about what to tell the anesthesiologist prior to going to surgery. So I told the beady headed man with a European accent and a tight multicolored surgical cap that I wanted to wake up with no pain and I didn't want to throw up.
He made it seem (in the whole 3.5 minutes I spent talking to him) as though this was easy enough to accomplish. Scott and I were watching tv behind the preop curtain. I was surprisingly calm and had no idea what was in store. It was 5 o'clock in the morning. My Dad poked his head through the curtain and said he was going to go move the car and he would be back. They only allowed one person in the little curtain room and Scott was with me.
I guess the next happenings are a blur because I don't remember having the mask on me or anything else until I woke up. In pain.
When I woke up my mouth was dry. I felt nauseous or like throwing up. The pain was bad in my abdomen, so much that I could not relax my back and kept arching and clenching my muscles. I also kept holding my breath. A bird looking nurse with a curly light brown bob and a pointy little nose was attending to me in some way or maybe helping my get ready to move to the recovery room. She had a weathered look and soft wrinkles. She possibly should have quit this job years ago when she first started tiring of it.
This nurse looked annoyed and I thought it was just her, but she let me know very soon that she was annoyed primarily with me. " You know, you keep holding your breath when you're sleeping and every time you do that an aLarm goes off and I have to come turn it off."
"I can't seem to unclench my back muscles. There's a lot of pain. Should there be a lot of pain?"
"Maybe you should try moving up a little bit. You look like you're laying in an uncomfortable position. Here - try putting this pillow behind you." And she started shoving a pillow behind my back. Which hurt. Things were happening fast and there were some other nurses checking tubes and things and moving around - a sea of blue scrubs. "Try to keep breathing," the bird nurse said. And then she was gone.
Ouch this pain was like someone was raking my abdomen into little piles of leaves.
Somehow I was wheeled to the recovery room which reminded me of a medical tent in MASH. There were about eight or ten beds lined up in bright crappy lighting, four or five on each side of the square room. I was put in the SE corner, furthest from the door. There were curtains separating us and I could hear other people's machines beeping and pumping. Some people were moaning. The man on my left was speaking an Asian language. He seemed pretty out of it and I had never heard someone out of it speaking in a different language before.
I had a pain pump which didn't seem to be working. I kept pressing it like a million times in a row. Finally I pressed the call button to say What the hell? and What time is it? and When can I go to a different room? The nurse who came did not speak much English. She was Asian and also had a bob and was moving mouse-like within the curtain. She only answered me with one word answers and sometimes did not answer me at all. I told her I think this pain pump thing is not working. She did not answer, but she turned the machine toward her and started to press some buttons and the thing made some beeping noises and then she left. She came back with a book and started pressing more buttons and I was thinking - Great she's got the flippin manual out?? I finally said in a voice that I wanted to try not to sound too racially offensive, is there someone else who could help me? Can you get someone else? I'd like Someone Else to come in here please. She did not acknowledge these requests and then she left. For a minute I thought about asking the guy to the left of me to maybe interpret because maybe this nurse did not understand me, but I didn't do that.
The thing still did not seem to work so I pressed the call button again and no one came for a while. Finally a concerned looking woman poked her head though the curtain. She was not a nurse, but a doctor who was checking on her patient.
I asked her what time it was and she said it was 2 in the morning. I told her I thought I was supposed to be getting a different room and she said yes, everyone was waiting because they didn't have any available beds. I asked how long I would have to be in here and she said hopefully I could move within the hour.
She asked me if I was uncomfortable and I told her the pain pump doesn't work. She explained to me how to use the thing correctly and then she reset some buttons and said It should work now.
In the middle of all of this, I was having trouble breathing with the pain and was having panic attacks. I was making a horrible noise through my throat trying to catch my breath. This doctor kept telling me to breathe and stayed with me until I was able to calm down. The pain pump started working. I was there till 8am and every time I started talking about the night, I had another panic attack so everyone told me to try to stop talking about it.
I have posted this excerpt not to say "poor me and my shitty surgery." Rather, I feel that if we are going to try to improve the quality of health care in this country, we have to share information about how things are. This post op experience was just the beginning of the less than mediocre care I received at this Hospital. I am now receiving outstanding care at a different Care Center and I promise to write a more uplifting post next time, my friends.
Thursday, February 26, 2009
In January I attended my nephew, Danny's, baptism. Though I had not been to church in a long time, I was raised Catholic. Finding myself again sitting in a wooden pew, standing and sitting at intervals and crossing myself in the name of the Father, the Son and the Holy Spirit felt mildly comforting. But when my sister-in-law handed me my freshly baptized nephew - just handed the baby, bundled in a white christening gown that had been handed down for generations, right over the pew and into my hands - I felt something pretty powerful. My hands were instantly warm and kind of tingly. I started to cry. Then I looked at my little brother and laughed at myself. But he didn't laugh.
This Sunday, I went to church with Luka, my friends Jamin and Ryan, and their 8 month old daughter Angelina. Luka had asked me to go to church and when I told Jamin - she said "I'll go too." So we decided to check out some different churches in Portland in an effort to expand our sense of spirituality. I would not say we are shopping for a church to belong to. Rather, we are looking to expose ourselves to spirituality as a whole. I can't say I believe in any one church or religion or god. Maybe I believe in them all. Or maybe I don't think anyone's got it quite right yet. But I figure now's as good a time as any to do some exploring.
We started with a beautiful old Episcopalian church. It is built of dark stone with bright red doors. The service is quite similar to a Catholic service and we stood up, sat down, kneeled (or at least realized kind of late that everyone else was kneeling and we weren't.) We watched some babies and grown children get baptized. We sang Hallelujah and stumbled through some other songs. We read along in the book of scriptures and when Jamin said "preserved" instead of "persevered," we guffawed and snickered for probably 3 minutes. When it was time to recite the Our Father - we did so perfectly. Jamin even new the end part - something about "thine is the kingdom and glory," but I can never remember the rest. Luka sang and played with Angelina. We ate "the body of Christ," - I let Luka have the wafer even though she hasn't had her First Communion - oops, hope that doesn't offend-. We put some money in the bucket and shook hands with our neighbors and said "peace be with you." It was familiar. And peaceful. Next week we might try a Buddhist temple.
My mom always told me that my ability to write was a gift. Presumably from God. I did explore this gift and did a lot of writing in my twenties and then kind of put down my pencil and picked up a camera. Taking pictures took less time and thought. Less discipline and concentration. Recently - as you can see - I have taken to writing again. I made a pact with whichever God or Buddha or Saint or Big Tall Redwood Tree was listening. -I promise to use my gift. Please let me live.-
My husband's gift is music. I like to listen to him play - he can play pretty much whatever instrument you put in front of him. I have been encouraging him now more than ever to use his gift. It's hard when he has this role as "caretaker." As the put-up-with-everything-your-wife-does-and-says-because-she-has-cancer guy. Because I know I can still be annoying and bitchy even though I have cancer, and maybe even more annoying and more bitchy. I want him to go play drums for hours. To write thousands of new songs. To not let my cancer stop him from living his life. From using his gift.
My husband has another gift. It's called collecting things. Some people may not think of this as a gift. Even I have thought of it "something other than a gift" (to put it mildly) as I've tried to maneuver my way through piles of "collected things" while just trying to throw in a flippin load of laundry. But Scott is the only person I know who out of the blue can pull out an Atari System from 1982 in mint condition with 10-12 games including Donkey Kong, Pitfall, Pacman, and yes, people, Asteroids.
Sometimes I really believe that playing Asteroids is my cure. Visualizing in my head the radiation and chemo as the little triangle thing blasting at cancer cells is one thing. Actually playing the game and blasting the big colored blobs into pieces is another piece of healing altogether. Yesterday when I played I got a score of 7140. When Scott plays, he gets like 16,000. He is really into blasting those things away.
Church, check. Using gifts, check. Blasting cancer away by playing Asteroids, check. Go away now, cancer. Go on along now.
Saturday, February 21, 2009
One of my favorite frequent mom and daughter times with Luka is Lunch Time. Since she was able to sit in a high chair, I have looked strangely forward to the time of day when I can cut things into little squares. In high chair times, it was cheese, apples, avocados, toast, and bananas. Now it's mainly peanut butter and jelly, avocados and pears. Whatever it is, cutting things into little squares gives me some kind of joy, possibly associated with the control over the knife and the familiarity of a daily (or now mostly weekly since Luka eats lunch at kindergarten) routine. Arranging the little squares on a butterfly plate with applesauce and a green Ikea spoon is fun.
At Lunch Time, Luka sits at the kitchen table (formerly in her highchair) and sings, talks, draws pictures or tests the range of her octave scale by making periodic highpitched squeaking noises. Our conversations have grown from "ba ba ba" - "yeah, Luka, ba ba ba," to "ball" - "yeah, Luka, ball," to "I'm not going to take a nap, Mama," - "Well, actually, I think that you are going to take a nap, Luka," to issues involving school, friendships, and things like responsibility (ie. why it is important to hang up your coat and not throw it on the floor and kick it under the couch when you walk in the door).
Today, we talked about teeth and baths. Luka sat at the kitchen table singing a song she must have learned at school about the "circle of life." She sat with her head cocked to the left side, her feet tucked behind her, singing and drawing a new backdrop for her fish bowl. I set down her lunch and was washing some dishes at the sink when she asked me, "Mom, what does it feel like to get all big teeth?" We talked about it for awhile and then she said, "Are they always crooked?" We talked about that and I told her that my teeth had been crooked so I had braces. She asked me who puts the braces on and I told her a special dentist called an orthodontist. She said, "Why don't they call it a Brace-odontist?"
Then I washed some more dishes and she said, "Mom, what would happen if you took a bath for two weeks?"
I started my second round of chemOtherapy about a week ago and was getting through that alright. Then they hit me with some radiAtion. They put 4 little permanent tattoos of ink dots on the skin of my chest and use the dots to line up the external beam radiAtion therapy. For about 10 minutes a day for 10 days, I lie on this little white bed with my arms up over my head, while a machine in the shape of a circle rotates around me and shoots radiAtion at the "large mass" in my left lung from 3 different angles. I am happy this is being done. I visualize the zapping of the tumor, as it is easy to picture the radiation beams in the shape of the little bullet things in Atari's Asteroids. Who says playing tons of video games as a child can't be useful as an adult? Clear visualization is my friend. I guess RadiAtion is too.
Here is the thing I don't like about my friend RadiAtion: it makes me feel so tired that sometimes when I'm standing in line at the store or picking up Luka from school, I feel like I could very easily slump down to the linoleum floor and be in a REM sleep mode before anyone even noticed I wasn't standing anymore.
This means that sometimes I have to take naps in the afternoons. And miss my Lunch Time with Luka.
I know it will only be for a short while that I will have to endure the side effects of this treatment, and that because I Truly Believe my treatment plan will work - in the long run missing a few lunches won't be a big deal. I know also that I am lucky because I have a flexible work schedule and plenty of help from my community and family. But it still pisses me off when I have to miss Lunch Time with my girl Luka. I just want to cut stuff into squares and talk about teeth.
Tuesday, February 17, 2009
In early February of 2008, I had a tea party. About 12 of my closest female friends gathered at my house to drink rooibus, green and black tea, eat little salads, hummous, and olives, and lend me some support. I had been diagnosed with stage 1B cervical cancer in January. February 28th was my scheduled hysterectomy with lymph node dissection. I was feeling nervous. And sad.
Each guest brought a plant. After the tea party, I gathered them all up (not the guests; the plants) - the witch hazel, the white sage, the lemongrass, the lavender, the creeping thyme and all the rest- and planted them in a little patch of dirt in my backyard that I named the Evita Garden. All spring, I watched it bloom and tended to it. In the summer, I harvested some herbs and sat by the garden, my eye often drawn to the little patch of vibrant purple flowers closest to the front, on the left.
This winter, we had some snow. The garden leaned back and pulled closer to the ground, its green triumph hidden by the cold. Most of the plants went brown for the winter and I will wait patiently until spring for them to come back.
Oddly enough, the little patch of purple flowers never really missed a beat. The patch seemed to shrink and close up under the snow, and then miraculously reappeared some days later, as though unscathed. I walked back there yesterday to be sure, and there they were in full purple vibrance.
The Evita Garden:
Evita Peron is known to have died of cervical cancer in July of 1952. As research indicates, she was never told of her condition - and believed she had "vague female problems." The cervical cancer was kept secret due to her husband's political campaign and the Argentine government.
Cervical cancer research has come a long way since the 50's. Some people don't like talking about it because of it's association with the virus HPV. But when close to 70% of the nation possibly is carrying the virus, with symptoms of its existence sometimes never surfacing, it seems logical to talk openly about it and to take serious measures to stop it. There is an HPV vaccine for adolescents out now called Gardisal. Also, it has been determined that women with mild dysplasia (something I was told I had on 3 occasions during my very Regular annuals - "it should go away on it's own," they said) have depleted amounts of certain Vitamin B and folic acid in the cells of their cervix. Taking extra supplements could be a preventative measure worth demanding research about.
Off my cervical cancer soapbox now.
Saturday, February 14, 2009
Tuesday, February 10, 2009
Went to see Dr. B this morning; had some blood drawn so the lab techs can look in astonishment at all the millions of white blood cells I have magically created this week. Computers are down, so I'll have the results in a few hours and if all is well, can restart chemO tomorrow.
Dr. B pronounces chemOtherapy like this: chem uh therapy. I like this.
I had to have a word with Dr. B today about doctors and being able to get in touch with them. I had a rather important question and tried to reach him directly. You have to go through this system where you call and talk to the advice nurse line and leave a message and then the advice nurse calls you back. For most things, like nausea and papercuts, this system seems ok. But when you have a pressing issue, like Your Pupils Being Asymmetical so One is Huge and the other is Tiny, you want to talk to your doctor. So after I called the advice nurse and insisted on a brain MRI and after I called back and said "I would like to speak directly to my Dr. so please have my Dr. call me directly," and after the nurse practitioner called to say the MRI was scheduled, I expected to hear from my doctor.
I did not hear from my doctor. But I am a very lucky cancer patient because I have a Dad who is not only an awesome dad, but who also happens to be a doctor. From the beginning of my diagnosis, through my surgery (which I may someday write about here - you know you want to hear all about it) through the diagnosis of my cancer recurring to my lung and everything in between, my Dad has been there to explain everything in detail. To interpret medical jargon. To reassure me. To make sure I always understand that there is hope.
We have never been a dramatic family when it comes to illness and ailments. We are more of a "if it hurts when you do that, then don't do that" family. (And when saying we have never been a dramatic family, I do mean in terms of illness and ailment - give my family a small piece of gossip and we'll be sure to turn it into a full blown drama and also probably a more than slightly exaggerated tall tale). Anyway, when I noticed my pupils being different sizes, I did not want to worry anyone so I didn't say anything and I just did some internet research (not smart) instead of calling my Dad. I suddenly had the intense feeling that the tumor had invaded my brain. I insisted on a Brain MRI because I wanted someone to tell me that I was wrong and I wanted to proof.
When I began to check myself and the level of drama I was creating for myself, I called my Dad. He immediately had some research on hand about nerves in the upper lobe of the lung and how one goes up and around the eye. Apparently, if there is pressure or inflammation around this nerve, like say from a tumor in the lung, the pupil near the eye of that nerve can have a hard time constricting. Horner's Syndrome or something. Although I was not totally freaking out and I did have some level of calmness about myself, my Dad once again reassured me and made me feel better. Isn't that what a doctor is supposed to do? Make you feel better?
But I still had the MRI. And when I saw my doctor today and he told me the results were negative for any brain involvement, I said, "Yeah, my DAD told me that would most likely be the case." Then I kind of reemed Dr. B out for not calling me back like I asked the advice-nurse-message-talk-into-a-machine-about-important-stuff-you-should-be-talking-to-your-doctor-about-line to have him do.
In Dr. B's defense, he did not receive the call back message because it was mistakenly put in his "append" folder, which is a folder that I guess is a not-that-important folder. Anyway, my mom was there with me at the appointment and she said, "You know, she's not really a complainer. She's not going to call you with a hangnail," or something like that. Dr. B said he knew that and he gave me his cell phone number, direct voice box, and email address. Anyone want this info? Just kidding. Scott says he's going to call up and say, "Hey Dr B., it's me Scott - I made up this really great song about cancer, do you want to hear it?" or "Hey, Dr B., it's me Scott again, how do you spell cancer?" But he won't. Do that I mean.
So I have some funny lookin pupils sometimes, but that should even itself out when the tumor starts to shrink a little bit. In the meantime, I feel thankful to have my Dad researching the latest treatments and what to do if the chemo and radiation aren't quite cutting it. To have him to talk to when I need reasurrance. I feel thankful that my mom is here to keep my house clean and to play bingo with my daughter and that my husband and my friend Thandi are putting together a sauna in the backyard. Oh, and also that I have Dr. B.'s cell phone number.
Sunday, February 8, 2009
Friday, February 6, 2009
Holy week of integrative medicine. Blood counts down? Eat garlic. . .do acupuncture. . .take these chinese herbs. . .visualize. . .massage. . .take vitamin C. . . don't take vitamin C. . .get lots of rest. . .bounce on your heels. . .jump rope. . .drink electrolyte enhanced water. . .antioxidants. . .no antioxidants. . .salvia. . .astragulus. . .coriolus polysaccharides. . .holy shit.
On Monday I went to see Dr. S, a "body talk" therapist. Though I can't really think about that term without getting Olivia Newton John's song "let's get physical" stuck in my head for hours, the therapy is interesting and, even more interesting; Dr. S is a walking talking survivor of debilitating MS. Years ago, she was blind in one eye and could not ungnarl her hands. She had all kinds of crazy neurological issues on any given day. The doctors gave her the "you are incurable" prognosis. To which she said (to herself, but maybe to the actual doctors - I'm not sure), "Just because you fuckers can't cure me doesn't mean I am not cureable. I'll cure myself." And she did.
Body Talk therapy is basically about directing the body and mind to direct "healing attention" to neglected areas. The practitioner is talking your mind through a process of reprogramming systems in your body. For instance, by tapping my hand and feeling my hand pulse, Dr. S claimed my pancreas was dehydrated. She also said my cells were dehydrated because my cell membranes weren't allowing hydration to enter the cells. She does some "body talk," which is very technical and medical sounding, and then taps on the brain to get it to "fix the faulty communication" and taps on the heart to "store the fix." Tapping on the body to get it to focus on healing is apparently an age old practice and and is used in yoga and acupuncture practices as well.
Body Talk was developed in the 1990's by Dr. John Veltheim - an acupuncturist and Reiki master. Sound like mumbo jumbo? I'm not sure about it either. But what do I have to lose? All I know is Dr. Sid said since my cells and dehydrated systems would be rehydrating, I might notice that I have to pee more. The night after the first therapy, I had to get up to pee 3 times. So either something is working in a healing way like they say it's supposed to, or I will just be peeing a lot now.
Tuesday was yoga and then a steam/sauna with detox tea and some sweetious time with my friend Andrea. Wednesday was a meeting with my Naturopath, Dr. T, and acupuncture at the Immune Enhancement Project (IEP). Thursday was a meeting with my other Naturopath, Dr. C and Acupuncture at Providence Cancer Center. This morning was Acupuncture and Shiatsu massage at IEP.
Crazy week of "alternative healing." It is leaving me feeling rather exhausted. I will welcome the day when chemOtherapy and radiAtion are considered the "alternative," but for now I will commit to every single piece of healing possibility that blows toward me in the breeze. So, I go in for more blood work on Tuesday and hopefully will have my white counts and platelets flying like tiny little kites so I can hop back on the chemo train.
The sun has been showing itself lately. When I get home from work today, I will go in the backyard and pick up some apples. I've been wanting to do this all winter, as they have been littering the way back of our yard since dropping off the trees in the fall. They are scattered like little balloons, ready to pop if you step on them and it's time for me to clean them all up. I'll bend and gather, scoop and toss. And then I'll feel much better.
Monday, February 2, 2009
Today I went in for some more chemOtherapy. The nurse who came in to draw my blood had frizzy hair and shaky hands. She had light blue and pink flowered scrubs that looked like guestroom bathroom wallpaper. She couldn't find my vein and it felt really pokey for a while so she tried my other arm. I generally like nurses (my uncle, aunt, and brother are all nurses and I am constantly impressed with the way nurses really run the show), and I liked this nurse, but I did not care for the shaky hands. (Shaky hands don't bother me either except when the person in possession of the shaky hands is sticking a needle in my arm. My lab partner, who was also one of my best friends in 7th grade, had shaky hands sometimes and we thought that was a real hoot when she was trying to pour some weird liquid into the beaker, right Parnell?). Anyway the nurse took some blood and then Scott and I went to the inclusion room.
I was happy that my seat next to the window was open and we sat down. My nurse came and gave me my hydration. For a minute, she couldn't get the machine to work and I thought briefly to myself, can't I get that nurse over there in the sassy blonde bob and fashionable purple and black scrubs? But then when my nurse got the machine working, I felt bad for being slightly superficial.
Scott and I sat for a while, with him drawing in his sketch book and me playing around on the computer. I had just put on some headphones to listen to a mix Scott made called Julieemo; or chemo beats I like to call it. Here comes my nurse to tell me "Your white blood counts are low. The doc wants to see you. No chemo today." And off we go to see Dr. B.
Seems the chemo is making my white blood count and my platelets too low, so we have to hold off on chemo for another week. I'm supposed to have a full 8 hour day of chemo every three weeks. Also, I was supposed to start radiAtion this thursday and now we have to postpone that too. So son of a crap. Stupid white blood cells. Stupid platelets. No, I take that back. I love my white blood cells. I love my platelets. Stupid cancer.
So Dr. B said to not worry too much, because it takes a while to see how one's body metabolizes the chemo drugs and most likely, the Taxol is still in my system and therefore, still shrinking the tumor. I still felt a little frustrated because I know that some people have to stop treatment, or get less of the prescribed doses because of these types of side effects.
When I got home, I looked in my book called, Natural Strategies for Cancer Patients, by Russell L. Blaylock, MD. (If I could figure out how to underline that title I would, by the way). In it I found some suggestions for what supplements to take when blood counts are low. They include curcumin, folate, sublingual methylcobalamin (what the? - oh it's vit b12) , vitamin b6, vitamin C (buffered as magnesium abscorbate), vitamin E succinate, and niacinamide. If you are curious about the doses, I would suggest picking up this very helpful book, because I ain't no doctor and can't prescribe this kind of stuff. But I did go pick it all up (with one of my gift cards to the local grocery and vitamin shop - thank you people; vitamins are spensive). I will have more blood drawn next week to see if I can continue treatment at that time so stay tuned to see how the vitaminiminimins work.
So I did all of that then came home and Scott made me a burrito with beans and brown rice and swiss chard. Scott is my husband, my man, and I mention him every so often. Let me just say that he is a constant support and if were a metal crafter, I would craft him a shiny medal. When we gave our vows and talked about in sickness and in health, neither of us had even thought about chemo or blood counts or hair loss or surgery to remove your uterus or nurses with wallpaper scrubs. Now it is something we think about every day. He doesn't complain. He makes me food, brings me movies, makes me mixes, takes Luka skiing, rubs my back where it has been hurting, and works xtra hours at the shop. When it gets to be too much, he goes for a long walk or plays his drums. Today he played his drums and now he's going for a long walk.
Scott probably won't like me writing about him, so I'll stop, but I did want to mention his AC/DC shirt. For some reason, he has worn this shirt on some monumental occasions. Like when Luka was born. And when he proposed to me. It's not as though he woke up and thought about it and said "today I'm going to wear this shirt because today is special." It's more like us going back through pictures and saying "oh look this is the day Luka was born - look you have on your AC/DC shirt," and "oh look this picture was taken right after we got engaged, "look - there's that shirt again." So when we looked at some photos after I shaved off my hair, it was funny to notice Scott's shirt.
Blood counts schmud counts. I'm going to go finish my burrito and listen to Back in Black.