Archive for March, 2010
I am a big fan of O! Magazine. I think it is a great reflection of positive life, mind, body and soul. There are many contributors that help to create this goal. It is odd, I am not as much a fan of her show. I more prefer Ellen DeGeneres. She makes me I laugh a lot, it’s full of happiness, light, energy, and joy.
In the March O! magazine, Oprah interviewed Thich Nhat Hanh and found this reply to one of her questions about deep listening interesting.
Nhat Hanh: Deep listening is the kind of listening that can help relieve the suffering of another person. You can call it compassionate listening. You listen with only one purpose: to help him or her to empty his heart. Even if he says things that are full of wrong perceptions, full of bitterness, you are still capable of continuing to listen with compassion. Because you know that listening like that, you give that person a chance to suffer less. If you want to help him to correct his perception, you wait for another time. For now, you don’t interrupt. You don’t argue. If you do, he loses his chance. You just listen with compassion and help him to suffer less. One hour like that can bring transformation and healing.
In the Gospel of Matthew he says, “In everything do to others as you would have them do to you; for this is the law and the prophets”
The Gospel of St. Luke has “Do to others as you would have them do to you”
Buddhists say “hurt not others with that with pains yourself”
Jewish Talmud says “what is hurtful to yourself, do not to your fellow man” (or woman, child, animal, etc.)
Hindu Mahabharata says “do naught to others which if done to thee would cause thee pain”
Why do I bring up these versions of The Golden Rule? Because it is a worthy way to live.
When I consider those that I have met managing their life with cancer, I have offered ill-fitting suggestions that started off with “you should try this…” or “have you tried…” I had never experienced cancer to that point directly; only what had been shared by others or read or heard about. I now realize how wrong I was. It would have been so much better to just listen and be there for the other person.
Every single person who has cancer has a very unique path. There is no ONE single protocol, no one way of getting chemotherapy. Nothing is the same for any one person. This is a myth that needs to be dispelled. What your mom, aunt, father, brother, coworker, neighbor or anyone else you have ever met has gone through, has been different. I have yet to meet one person with cancer during my chemo treatments who have anything similar to one another. One of my drugs is red and looks like koolaid. Not one single person in the 20 or so I share my day has koolaid in their treatments. And side-effects, I have learned every one has very different experiences.
I share this because I have not been the kind of friend others needed as my own experiences have shown me being on the opposite end now. I was talking with my friend Miriam a while back. Her mom is recovering from breast cancer. She recommended a book to me that she thought would help me to see that how I feel is how others with cancer have felt. That my guilt for cancelling plans, or having no desire to talk on the phone or to anyone for that matter, or being frustrated, or angry, or sad is all normal. My therapist tells me similar things but somehow, I just didn’t believe it. The guilt I have for not being more social with people and not accepting every invitation has been incredibly hard for me. Cancelling even more so.
The book by Lori Hope, Help Me Live: 20 Things People with Cancer Want You to Know, is based on the author’s work with those with cancer,those who have survived cancer, and those therapists who have helped those with cancer. I wanted to share the 20 things because I think it helps everyone — friend, caregiver, cancer patient, family member — to more readily understand this oddly traumatic, scary, and surreal experience. Please do not believe that any one of the below is directed at you, the reader, because nothing could be further from the truth.
- It’s okay to say or do the wrong thing
- I need to know you’re here for me (and if you aren’t, why not)
- I like to hear success stories, not the horror stories
- I am terrified (Anissa note: this is an understatement)
- I need you to listen to me and let me cry
- Asking my permission can spare my pain
- I need to forget – to laugh
- I need to feel hope
- Telling me to think positively can make me feel worse
- I want you to trust my judgement and my treatment decisions
- I want compassion, not pity; comfort, not advice
- I am more than cancer; treat me kindly, not differently
- I want you to help without my asking you to (Anissa note: this is true in some cases, but for the most part, I would prefer to ask for help. I know, how do you know the difference? I don’t know)
- I like to be held in your thoughts or prayers
- My mood changes day-to-day; please forgive me if I snap at you (Anissa note: mine seem to change quite a bit more frequently than that, like hourly!! And I am sorry if I am not always my usual self)
- Hearing platitudes or what’s good about cancer can trivialize my feelings
- I don’t know why I got cancer and I don’t want to hear your theory
- I need you to understand if I don’t return you call or want to see you (Anissa note: it is truly NOT personal)
- I want my caregiver to take good care of herself or himself
- I don’t know if I’m cured, and bringing up my health can bring me down (Anissa note: sometimes it’s nice to be asked; other times, I wish it weren’t brought up. The hard part – how would you know which? I don’t know)
There was a postcard on Postsecret on Sunday that I truly related to. No, I do not have a terminal cancer, but cancer is cancer. The hell that I have gone through has been just that. I am ever grateful that I will most likely not be getting chemotherapy for ten years like some wonderful people I have met. I truly have no idea how they do it. Will it ever be gone for good, not according to my oncologists. I will have to be ever diligent for signs of its return in the future AFTER they tell me it’s in remission. Yes, they tell me, one day, I will say those words. Regardless, what I have gone through has not been a privilege. It has not made me see “the light” and will live my life completely differently. I don’t know why either, so please don’t ask. I know that I believe in myself and my future as much as I ever did but I will never say the words “cancer was the best thing that ever happened to me,” nor do I want to.
I believe the Golden Rule would really help me – as a friend and as a person with cancer. But if that doesn’t work for you, how about laughter is the medicine? We all know how much I enjoy to laugh 🙂
Since my divorce, I have not lived in a house in almost 10 years. Apartment living definitely has its perks, but it also really doesn’t. I got the itch last year to move. But I panicked and never even got to the looking at houses part. The $8000 tax credit did not incent me in any way to change my mind.
I think that the difference this year is that not only has 9 years in apartments more than enough, I want some solid roots. I am tired of that feeling of impermanence. I want to know that where I live, I could live as long as I want. I won’t have to hear the people in the next unit over cough, tap his toothbrush on his sink, dogs, parties on balconies (right under my bedroom window). I would also like to quit hauling groceries up 3 floors. It’s a real pain and makes this dreaded chore even more horrible. I have never been able to decorate outside for any holiday (especially Halloween).
More than these really minor things though, I want to think about my future. I know I have one and I want to live it. It’s been a daunting, scary, anxiety-filled four months. I don’t want to start a fourth year in an apartment. I want to start anew in a house that I make my home. One I can make memories that will last a lifetime. One where I can have people over because I have the space and we can have a BBQ. I would like to people who visit me not have to share my office and sleep on the couch. I know it’s the American dream to own a house. I can’t say that this has been my huge dream. Nor was having that big wedding. Those were never my dreams. However, as I lie awake at nights, all I can think about is beginning a new life in a home that is mine, with space (instead of a kitchen table one step away from my couch). More than anything, it’s time to really find that place that I call all mine, where I walk in, and I feel as if I have stepped into an oasis of calm, enjoyment and comfort. Almost as if the world falls away just a bit. Ahhh
I don’t mean to get all cranky, but I am just plain tired. I feel like a hamster on a wheel. This past 2 1/2 weeks have been horrible. I have done my best to hide it, but I am cranky, frustrated, and tired.
I am so darn tired of having a runny nose. I have had it for 2 straight months now. I want to cut my nose off! It’s tender as heck. I have no idea why, but this time, sleeping has been a huge challenge. The doctor has tried two different prescriptions and neither has worked. As we all know, I have long considered sleep (naps really) a hobby but lately, no hobby going on. I can’t fall asleep easily and can’t stay asleep.
But more than anything, I just want more certainty and this is the true part of the hamster wheel that I want off of. My oncologist referred me the other oncologist he had been consulting with. First, I am so tired of doctor appointments. I am averaging about 3 a week. The new oncologist doesn’t think I need any more chemo. Ok, not a bad thing to hear! She recommends starting radiation, every day for a month or thereabouts. Ok, I knew that was coming. But here is the thing, neither doctor seems confident in how they will know it’s really gone nor when it returns other than if I notice another lump like I did last time. They say I would continue with checkups, but what would be the point necessarily? And neither knows what the patch on my hip is nor have provided any guidance on next steps for that. Off to my primary care I guess. Oh yippee, another doctor appointment.
I know that I could have it so much worse. I do know this and I really appreciate where I am in life. I am just so tired of it all. I am sure I just need to recharge the inner part of me that gives me energy, positivity, and the ability to keep moving forward. Maybe my doctor appointment at 3pm tomorrow will help. Or maybe I need a good cry. Or maybe, I just need a hug.
I finished another book recently called Quirkology by Richard Wiseman. What I liked about this book was that it examined really odd little things about people and the world. Some of these experiments are twists on old ones, some are incredibly fresh. I love to read stuff like this – it’s the secret psychologist in me. His team re-enacted an older experiment to determine the six degrees of separation phenomena. Many years ago, this letter experiment yielded that we are all within six people of each other (Kevin Bacon not included). Having re-enacted the same experiment again, it seems that the world has actually shrunk, and we are within four people of each other. There is so much talk that technology separates us and can be isolating, but this shows that technology (among other things) has helped to increase our connections.
When I thought of this experiment that I am barely doing any justice to explaining, it reminded me of cancer. There are many commercials, pamphlets, public service announcements, etc. that always allude to everyone being touched by cancer. That we always know someone who has had it. Well, now I really hear the message. I think is similar to the economic conditions. I hear the news tell me that all of us have been affected by the high unemployment and layoffs and that is true too.
Why do I share all of this, heck if I know. Maybe to illustrate that sometimes, my mind is such a jumble. It takes a lot of focus and concentration to make sure I am excelling at work and in school with no degradation, so that by the time I am with friends or at home, I am exhausted from trying not to be so ‘cancer-affected’. Because let me tell you, chemobrain is a real thing and has been researched as affecting those who are undergoing chemo. Thankfully, it’s a temporary side-effect! Here are just a few examples of what patients call chemo brain, or sometimes call brain fog:
- forgetting things that they usually have no trouble recalling—memory lapses (I keep wanting to put the jelly in the pantry with the peanut butter)
- trouble concentrating—they can’t focus on what they’re doing (I need more quiet when I do certain things so that I can concentrate better. I sit near a wonderful guy at work but he sometimes interrupts to talk about random things and this can be devastating to things like reading/grading papers or building my classes in Blackboard as it takes me off task and is difficult to regain my focus of what I was doing prior. This was never a big problem for me before)
- trouble remembering details like names, dates, and sometimes larger events
- trouble multi-tasking, like answering the phone while cooking, without losing track of one of them—less ability to do more than one thing at a time (this is true right now – I don’t multi-task nearly as much as I used to do and actually find this better for me. I finish more things now with this more singular focus)
- taking longer to finish things—slower thinking and processing (for me, it is the processing, it’s not as clear. I notice this most when I am thinking, like now as I write, and then must translate this to the page. Sometimes what I think comes out typed all wrong. I was thinking nearly ‘as much’ but typed in ‘enough’ in the bold green part of the previous bullet. This, compounded the multitasking issue, is another reason why I don’t do it as much)
- trouble remembering common words—can’t finish a sentence because you can’t find the right words
Isn’t the brain fun? Well I think so. I enjoy reading books about the brain and the way it functions. Daniel Pink’s A Whole New Mind is another excellent book about things like this and I highly recommend that one if you haven’t read it. If you want to take a few simple tests about yourself (they take seconds), check out the Quirkology self-tests.
I am always honest about what I am thinking or feeling in the moment that I write. Unless it is starkly personal and something that I don’t want to share with the world, I will write about it. So here goes.
I would love to have a nice day. Since last Tuesday’s chemo, I have not had one. I have had nice moments, a few hours, but not a whole day. I guess though, many of us could say what I just did on any given day. So in that regard, I am not asking for pity, nor am I complaining or whining. It is just the way it has been. I don’t often share too much that is going on, or at least I would guess it is more glossed over information. Others tend to tell me I look great and other than the hair loss, it wouldn’t be entirely obvious what I was going through. I think that fits because I really don’t think I am unique because of this at all. I think we all have some challenges that we are facing; they are just different for each person. So in that respect, what I am going through does not make me any more unique than anyone else, just different. But then again, didn’t we already know I was a bit of a wackadoodle?! haha
The sleep has been horrendous and by that mean, I mean almost non-existent. Even with Lunesta, the 100 mg of prednisone is kicking my butt. I am often a touch jittery in my hands which is a fun combination with my numb fingertips! But at night, I cannot get into a deep sleep at all. Most nights, I either stare at the ceiling, read, or work on the computer. I saw the clocks change for daylight savings time. It was weird to see a whole hour vanish in one little of the digital minute flip over. Thankfully, the rest will start to come back this week. Whew!
Not sure why, but the nausea the past week was also much worse. It just made me want to crawl up and hide from the world. The worse has to have been yesterday. After many days of just wanting some sleep and only getting about 4 hours each night, I finally got some nice rest. Then shortly after dinner, boom, my world seemed to cave in and the pain was immense until well after midnight. It’s a little unnerving to be so hot that sweat just seems to pour out of you and it’s not because you just came from a run or something. Imagine that cold sweat you get right before you vomit, well I wish I had had that only for a moment. It later swung to intense chills in which flannel pj’s, flannel sheets, a blanket and 2 quilts could not alter. But both of these feelings were still better than the pain. And during it all, all I thought was how much I miss my once simple and boring life.
My head knows that this is just my life, temporarily. That this is just where I am and through it all, I will be fine. As they say, “this too shall pass”. I know this, but in those moments, it is hard to really internalize that. You just want to be normal, or whatever your definition of normal is, and just fade into the world like anyone else. It’s naive. It’s childish. It’s selfish. But last night, it was the mental distraction I needed to remember simpler and less scary moments. And since it has been said that “life is made up of moments”, I am truly happy that last night’s are over.
This was shared with me and I thought it very unfair of me not to share with others. For me, sometimes the littlest things can bring me down. I think we all think that there are just too many things to do and you seem to wear out a path in your carpet as you put away shoes, do a load of laundry, clean the kitchen, clean the catbox, oh and put the clothes in the dryer, open the bills, oops, trash needs to go out. The endless little things like this can drive anyone out of the house for the day, even if it is gray and dreary out. But to have this shared with me, well it was an idea that sounded darn good and believe anyone that is faced with a similar journey might like this extra pair of hands too. I hope you pass it on. Thanks, Anissa
If you know of any woman currently undergoing chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning – 1 time per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. ‘Cleaning for a Reason’ will have a participating maid service in her zip code area arrange for the service.
Please pass this information on to people who know of any women going through any type of cancer treatment. This organization serves the entire USA and currently has 547 partners to help out.. So pass the word and let them know that there are people out there who care.