Protected: Trust fall
As you know, I have been working to break the brain draining choke hold that nearly a year and a half of bad sleep has wrought upon me. There have been peaks and valleys but mostly, I am sleep deprived. And now in the northern latitudes, it has gotten very cloudy and very dark. Without the long summer days to give light to my mind, I find myself being incredibly and totally fatigued during the day.
And it hasn’t been like I haven’t been doing anything to help myself sleep well. I exercise every day, I meditate, and I try to keep my stress level to a dull roar. I also started taking Chinese herbs for sleep prescribed by Dr. Wang, who does my acupuncture. They taste like a combination of dirt and mushrooms. Surprisingly, they aren’t that bad. At least they don’t taste like feet. I also take magnesium citrate and melatonin, as recommended by my naturopathic oncologist. The magnesium also helps with the leg cramps I get from tamoxifen. I have many patients as well as my daughter who take melatonin with very good impact on improving sleep onset (falling asleep). However, I’m not sure it’s doing anything for me.
I saw my psychologist last Friday and she gently suggested that I might ask my physician for Ambien to help me sleep though the night again as lately, I have been waking up 6-8 times a night, often with night sweats, which are side effects from Lupron. I have been trying to solve this problem on my own. I also started using blue light therapy since my energy level usually gets lower with our short, low on sunlight days. The blue light has helped in the past and it seems to be helping now by increasing my day time alertness. It also seemed to be knitting the fragments of my night time sleep together a bit so that I was getting longer amounts of sleep. I noticed that I remembered more dreams and felt slightly more rested when I awoke each morning.
I had an appointment with my medical oncologist last Friday. I have not previously complained about sleep. But I did this time. She was empathetic, as usual, and suggested that I start taking gabapentin to reduce the night sweats and help me sleep at night. Preliminary data would suggest that my sleep has improved significantly since starting the medication.
Stay tuned. So far so good. Sweet dreams.
But we in it shall be remembered-
We few, we happy few, we band of brothers;
For he to-day that sheds his blood with me
Shall be my brother; be he ne’er so vile,
This day shall gentle his condition;
And gentlemen in England now-a-bed
Shall think themselves accurs’d they were not here,
And hold their manhoods cheap whiles any speaks
That fought with us upon Saint Crispin’s day.-William Shakespeare, Henry V, St. Crispin’s Day speech
Soldiers prepare for battle is different ways. Some get drunk. Some revel, party, and have sex with prostitutes. Some pray. Some cry and despair. Some are calmly resigned to whatever fate may befall them. Some do all of these things. “War is Hell” as William Tecumseh Sherman said in 1879 and most of us give soldiers at least a little latitude in the way they deal with this reality.
Preparing for a mastectomy is one kind of battle plan. Some of us cope by crying, by grieving for the loss of a culturally and personally significant body part. Grieving for the loss of being able to depend on good health. Others cope by getting angry, by cursing the barbarous and coarse way in which breast cancer is treated, by amputating breasts, chemical warfare, and irradiating the Hell out of potentially tumorous sites.
There are many more ways to cope. I coped by writing silly posts about accidentally turning my hair orange, because I had an irrational need to be a little bit cute, to not have gray hair after my mastectomy. I wrote another post saying goodbye to my breast using all kinds of melon-related imagery. I also spent time learning about cancer and its history. Being silly actually made me feel a lot better. It took my mind off my worries and reminded me that I had the power to do something good, to make other people and myself laugh. But I never thought for a second that my mastectomy was going to be a positive experience. And I would have never predicted that I would be reading “The Emperor of All Maladies” in the pre-op area of the hospital just prior to my mastectomy. And coincidentally, I was reading the chapters on mastectomy. In a weird way it was comforting to know that the current surgeries were far less extensive than in the past. It was reassuring to see that there had been progress in breast cancer surgery. But honestly, I look back and think, “Why was I reading about cancer?” But at the time, it was the right thing to do.
I did not feel bereft, angry, or super sad in the weeks, days, or moments leading up to my mastectomy. I had anxiety, but it was relatively manageable. When it came time for surgery, I asked the anesthesiologist to knock me out as fast as possible, which she did. I did not want to belabor things. The operating room is surreal to me and I wanted to to experience the least amount of it as possible. More importantly, I knew that the faster I was knocked out the less time it would seem that I would have to wait until the surgery was done. I knew that there would be no perceived lapse of time between losing consciousness in the operating room and waking up in the recovery room.
But that was my way of coping, which worked for me. Not everyone wants to do what I did, scheduling surgeries as fast as possible, writing silly humorous posts, reading about cancer in the pre-op area, or getting knocked out as fast as possible. Moving ahead quickly, laughing when I could and reading history that put my disease in a larger context, made sense to me.
Some women prepare for a mastectomy by dancing. One woman, an OB/Gyn, prepared for her bilateral mastectomy by dancing to Beyonce with her surgical team. When I looked at the video, I thought of how dancing in the O.R. might be empowering for a surgeon. She may have never had surgery before and would have been used to being on the other side of the operating table. By dancing in the O.R. with her colleagues, she may have felt a sense of mastery that helped her prepare for her surgery.
I thought the video was cool but I understand why others thought it trivialized breast cancer or prescribed a model by which we are all compared. We should all be happy to have breast cancer. Yay, deforming surgeries! Yay, lymphedema! Yay, lack of sensation in the removed breasts! Yay, scars!
I am sad and angry that the popular media has taken this stance when it comes to breast cancer. But I do think, apart from that, each breast cancer patient needs to cope in his or her own way. Sometimes that way is dancing. And sometimes the dancing, just like mastectomy photos, are shared on the Internet.
We all prepare for battle in a different way but we are all fighting the same battle. Let’s do it together.
I have mentioned perhaps one or six hundred times that I have five brothers. One of my older brothers’ favorite “games” was pig pile. This involved announcing a victim and then having five siblings tackle and pile atop this person. For example the exclamation, “Pig pile on Liz!” was followed by my being tackled and piled on by five brothers, the oldest of whom was nearly 10 years my senior.
Pig piles seemed to be exclaimed on a very frequent basis and as the only girl of six children and the second to youngest it seemed that I was more often than not, the vortex to which the pile was attracted. A Bermuda Triangle of porcine piling, if you will. As the “baby” of the family, my brother James also spent a fair amount of time face planted on the living room floor beneath four sets of sprawling limbs shod in Converse low tops of various sizes.
Although our older brothers would admit to the pig piling, they would disagree with the metaphorical implications. They believed James and me to be spoiled. We avoided the horrors of ruler wielding nuns, whereas they all attended St. Anthony’s School, for example. Our family also had a little more money when I was growing up, not a lot more but just enough to fuel the “you’re spoiled” flames. I maintain that whatever advantages we may have had were more than offset by their mean older brother shenanigans.
James and I are only 18 months apart in age. Our next oldest sibling, John is 3 ½ years older than me and 3 ½ years younger than our next oldest brother, Mike. John was kind of caught between the “big boys” and the “little kids” of the family.
James and I spent a lot of time together. We played together a lot. We mostly got along very well though we could sometimes fight verbally and physically at which time my mom would yell, “I don’t care who started it. I’m finishing it. Go to your respective rooms!”
We played a combination of traditional boy and girl activities. We played with cars, trucks, and climbed trees. We designed obstacle courses in the yard and spent hours upon hours in the woods surrounding our house and neighborhood. We did not, however, play with Barbies or baby dolls. Remember, this was the late 60’s and early 70’s. My mom made us each two sets of Raggedy Ann and Andy dolls as well as a bunch of stuffed elephants. Due to her combination of genius and industry, we were able to play dramatic reenactments of family life with more socially acceptable dolls.
James was not really interested in formal music training, but he has an incredible ear and natural musical ability. He is also extremely funny. By the time I got to high school, I was pretty serious in my classical flute playing. He had a plastic slide whistle and would frequently copy whatever piece I was practicing in my room, complete with vibrato and when era appropriate, Baroque runs. When it wasn’t infuriating, it was hilarious.
These days my brother plays more music than me; he taught himself drums and plays with his 17 year-old son’s band. The only music we make together is the occasional game of Rock Band. The thread that carries over the years is that fact that my brother can always, I mean always, make me laugh.
He reminded me of this last Friday. James attended the requiem mass at St. James. I was kind of surprised to see him there since it was a pretty long drive for him and I think he hates to drive even more than I do. We got there an hour early to get a seat. During the time before the mass started, he was cracking me up and my laugh was echoing throughout the cathedral. When we were kids, due to different church rules, we were not allowed to talk before or obviously during mass. So with this as a back drop, his jokes have always been extra hilarious. I’d laugh, he’d say, “Now if any other family is coming tonight, they will be able to find us.” Then I laughed harder than before. Then he started singing family gossip in his version of Gregorian chant. I lost it again. Now here’s the thing about my brother. His antics are not particularly loud. He is actually a fairly introverted person whereas I am loud and gregarious. I believe he very much likes to set me up and watch the loud fireworks of my laughter, knowing that he is the one who lit the fuse.
James and I were successful for decades after our childhood in avoiding the bottom of the pig pile. Then I found out I had breast cancer and it wasn’t my older brothers that piled on top of me, it was the world in which I thought I had lived, that dissolved and crashed down on me. During the acute stage of my breast cancer treatment, there were many ongoing assessments and constant revisions of my treatment plan. When I was recuperating from surgery and bored, meaning prime time for worries to creep in, I called him, “James, I am bored. Tell me something funny.” And he did. And when I was anxious about waiting for the results of oncotype testing, which would determine whether my oncologist would recommend chemotherapy or not, I called my brother, “James, I have 20 minutes until I need to leave for my appointment. Can you tell me funny things and distract me?” And he did.
James does not show affection in traditional ways. I remember once, about ten years ago, his closing a telephone conversation by saying, “It was nice talking to you, Liz.” That was a major outpouring of verbal affection. But I know my brother loves me, thinks about me, and keeps the warmest wishes for my health. And he shows his love to me most consistently by making me laugh about today, laugh about cancer, and laugh about the things we did and experienced as kids.
For these things I will be ever grateful. James, you joined me at the bottom of the cancer pig pile. I can’t thank you enough for doing that. If you didn’t realize it before, please realize it now that you have helped me tremendously. Thank you for making me laugh at some of my lowest and scariest times. I love you a lot and I know you return that even when it may come in the guise of slide whistled Mozart.
James must have been about 1 1/2 years old to my three years. It looks like we were having much fun in a rare Seattle-area snow.
As I’ve mentioned on this blog in the past, I am not a psychologist trained in dream interpretation and generally speaking, the area doesn’t hold a lot of interest for me. But in my own flat-footed way, I get information from my dreams at times. For example, when I have a dream that bad guys are chasing me, it tells me that my daytime anxiety has gotten high enough to invade my dream scape so I take it as a cue to get myself to “calm the Hell down”. (And when I used to have Gilligan’s Island dreams frequently as a kid I perhaps should have taken that as a cue to watch less television! I would ask the Professor, “What do you mean you can’t find civilization? There’s a big resort hotel across the water over there, within easy swimming distance!”)
Another popular theme for my dreams has been pregnancy. I remember having my first pregnancy dreams when I was a teen and they continued for many many years. As I teen I thought of what my life would be like, would I be married, would I have children, what would my career be? I think a lot of those pregnancy dreams were about how my identity was shaping up as a woman and since a lot of those dreams involved me giving birth to lots of babies at once, I think I was perhaps more than a little concerned about how I would establish a work/home balance. When I was pregnant, I had birth dreams. My husband had one, too. He said that I gave birth to a baby who looked like a softball with one eye. Not wanting to distress me (thoughtful even in his dreams), he casually asked the obstetrician, “Hmm, so when do you think the baby will get a SECOND eye?”
Now I have middle-aged pregnancy dreams. On more than one occasion, I’ve realized in the dream, “Wait a minute! I’m not in my thirties anymore. I am 47 years old! Good Lord, how did this this happen? This is a very high risk pregnancy!” No one else in the dreams seems to worry about this. And I try to be as excited as I can be for the birth. Even if this cancer mess had never occurred, I would have a very low chance of getting pregnant at my age. And as long as I take Lupron shots, I will be infertile. Eventually, this state of affairs will become permanent as a natural consequence of aging.
So what’s the deal with the dreams? I guess an obvious explanation is that in losing my fertility I am thinking about it. (Yeah I know, “D’uh!”) The only thing I’ve noticed in my attitude about losing my fertility is that it doesn’t really seem to bother me that much. In contrast to much younger cancer patients, I was done having children quite awhile ago and was in peri-menopause when I was diagnosed. I had never planned to bear any children past age 35, anyway so I think I’d pretty much processed the probability that I would never get pregnant again, already.
I think part of this is just the realization that although I am not old, I’m not young anymore. Unlike my historical hang ups with body image, beauty, and weight, I am surprisingly less concerned about getting older. But I do notice it. My father-in-law, Don, a very fit and physically active man in his early 70’s, tells me that it shocks him when he looks in the mirror. Inside he feels much younger and the person looking at him is old. My Great Aunt Blanche had uncorrected vision problems for a number of years. Once they were corrected, she was shocked at her aged appearance because she had not seen herself clearly in quite some time. She died at age 105 years. She was still living by herself and in her own home, tending to her magnificent garden until she was 103. She was extremely fit and good looking for a centenarian.
But we don’t start off life as 100 year olds, do we? And we develop a view of ourselves over the years that changes over time but perhaps not as quickly as we change externally. I imagine that youth has always been prized due to its association with fertility and reproduction. Our culture, however, has gone incredibly and irrationally overboard with youth idealization. Some people decide that they are old when they are middle-aged, that this is a bad thing, and then they interpret the advancing years in a negative way for the rest of their lives. I sometimes tell people that Aunt Blanche chose her burial outfit when she was 80, only to live 25 more years. My grandmother also chose her burial outfit, a decades old pink and black peignoir set, which she used to wear on special occasions. I think she was trying to set her sex appeal setting to Ava Gabor in Green Acres. But it might have just as well been Esther Williams, since Grandma also used to wear an authentic 1940’s era gold lame bathing suit while she was watering the garden. But I digress…
When my father-in-law was a teen boy he asked his grandfather if there were things he missed about being younger. His grandfather replied, “Every age has compensations.” Don told me that he has carried his grandfather’s words with him throughout his life. As for my own life, I am not as fit or beautiful as I was when I was younger but I am a whole lot happier. I don’t sweat the small stuff so easily. I appreciate each day more fully. Finally, I know a lot of cancer survivors say this but I look at aging differently now. Aging is more life. I can’t be old unless I live for a long time. And that sounds pretty good to me.
Christmas at Johnny and Katie Torlai’s house. The boys are my brothers. I am the girl. I am guessing the year was 1969.
For those of you who didn’t get the Ava Gabor in Green Acres reference, here she is.
Protected: I can still read Curious George at night
I love to cook. And sometimes I even entertain large groups of people. Hmm, what large group of people might I know? Oh yes, my extended family!
My parents got married on 11/25/1954. That was also Thanksgiving day. They had Thanksgiving dinner for all of their guests. There were a lot of guests.
2004 was my parents’ 50th wedding anniversary. It landed on Thanksgiving that year. They had one request, “We don’t want to host or cook on our 50th anniversary.” So I told them that I would take over that responsibility for not only 2004 but for the years following. And I did just what I promised for seven years.
In 2012 I was diagnosed with breast cancer. And in November of 2012, I took my parents up on their offer to host Thanksgiving again JUST FOR THAT YEAR. It was a wonderful celebration and I so appreciated their generosity.
It is now 2013. I am really excited about taking Thanksgiving back! I have so much for which to be thankful. And as an extra added bonus, Thanksgiving is late this year, which means that it is not so close to my birthday, as it normally is.
I have started reviewing recipes. I have started thinking about baking fruit pies. I am not much of a dessert baker except for two things. I make excellent fruit pies as well as a mighty fine chocolate cookie. My mom is more of a sweets maker. I am into savory. I make turkey with cognac gravy. Mashed potatoes with caramelized shallots. I make Brussels sprouts that make cabbage haters weep with joy. (Okay, SLIGHT exaggeration. My sprouts are darned good.) My stuffing is so good and this will be the first year that I will have to skip it because of the whole wheat allergy thing.
My mom has emailed me, not once but twice, suggesting that she take over Thanksgiving for this year. My mom is not a control freak. She is sincerely trying to be helpful. The first time she asked, I thought she had read my post about financial stresses related to breast cancer treatment. She had not read it and I just told her that I appreciated the offer but that I was really looking forward to putting on Thanksgiving this year.
Then Mom actually did read the post and asked again, if it would make more sense for her to host Thanksgiving. I again, gave a gracious, “no thank you.”
I really want to host Thanksgiving. Mom, if you start worrying again, look at the title of this post! xoxoxo.
Protected: Cash Flow
Protected: Dr. Wonderful
Today, my brain feels pretty functional and I feel calm despite the fact that I still have a number of unknowns in my life including the results of my MRI from last Friday. I spent a good 2-3 weeks up until last Friday on a roller coaster of anxiety. I can’t remember if it was Wednesday or Thursday of last week but on one of those days I was a mess for a few hours. I was so worried about my MRI and the prospect of going through cancer treatment all over again. I have had plenty of sadness and fear. This was different than in times past. As I have written, I have felt storms of emotion at different times during the past 1 1/2 years. But at my core there was a sense of peace and calm.
How was my core different this time? In addition to the stress around the MRI being scheduled, then cancelled, then rescheduled (I hate that kind of stuff), about a week or two into that whole mess, my energy dipped precipitously. I was really really fatigued. Like everyone else, I have a low energy day every once in awhile. But I had several in a row. And the fatigue felt different to me, it was the kind that can pull me down into very sad places. This scared me. Anxiety followed by prolonged fatigue is how my depression has started in the past. And I have had periods of time, especially in the winter when I experience this fatigue and although I can never be certain, it feels like the start of a depressive episode that never happens because I am able to fight it off with my medication and cognitive therapy techniques.
I have not had clinical depression in over 10 years but it has been a strong concern of mine that I would have a recurrence due to the stress of being a cancer patient. So I was really scared last week and although I talked to a few people about the fears I had about cancer recurrence, I told no one, not even my husband, about my fear of being depressed again. I felt isolated, lonely and guilty about being a very needy person. I was still able to work and behave with a semblance of normalcy when it was very important that I did so.
By Thursday night, I started feeling significantly less stressed. I had gotten the core of peace and serenity back even though I was still distressed. But I wasn’t entirely back to whatever “normal” is these days. My emotional states change so much more frequently and intensely than they used to and I understand why they do. I can live with the “normal crazy” of cancer treatment. I am still myself but in technicolor. When I am depressed I am not myself. There are some people who have persistent depression, which tends to be a steady, low level misery.
In contrast, when I’ve gotten depressed, it has been acute and more severe. I fell into a very scary, powerless, and hopeless chasm, into a world where I could act like myself for some periods of time but it was acting. And I didn’t feel like myself at all. The first time it happened, I kept thinking that if I just kept problem solving, it would go away. So I let my untreated depression go on for some time. The second time it happened, I recognized it within a week or two and thought, “Oh no, we’re not doing this again” and got myself back to see a psychologist and my internist within a week and my symptoms started subsiding very quickly, within a couple of weeks.
Now that I’m writing this, I am realizing that I handled that last episode pretty well. And I am also still seeing a psychologist every month, not to mention all of the healthy things I do that are good for both physical and mental health. Depression, you are not welcome, but if you come anyway, I can deal with you, too.
My Eyes Are Up Here 