Don't Blame Me

Facebook is full of internet wisdom about how to prevent Alzheimer's, cancer, heart attack, psoriasis, and more. I was recently tagged in a post relaying information regarding how to avoid getting cancer, attributed to a major research hospital. The fact that the information was totally bogus, denied by said hospital, was not the part that really bothered me. It was the subtle notion that I caused this cancer by my bad behavior. And why tell me how to avoid cancer when I already have it? It is not comforting to me to think about all of the ways that I should have, could have, would have if only I had known. This article listed all of the things that cancer supposedly feeds on, like sugar and caffeine. The cancer that I have feeds on estrogen, so I guess I did cause it by being foolish enough to be born a girl.

I've been guilty of this; someone is ill and I immediately think, "well, they brought this on themselves." You know, by not eating right, avoiding regular medical procedures, smoking, not exercising, drinking, drugging, whatever. I smugly tell myself that they sort of deserve it. Why do I do this? I suspect because I want to feel like I am protected somehow, that I can dodge that bullet. I want to believe that somehow I will grow old with very little problem and just fade away into the sunset. My aching knees and dwindling energy have done little to burst this little bubble of wishful thinking.

Well, as time goes on I am coming to accept that I am as terminal as everyone else. Something is going to take me out. We all hope to die in our sleep of very old age, but far too often this is not the case. Old age can be painful and messy and depressing, then we die. While some of us live as though we have a death wish and are trying to hurry the process, most of us do the very best we can to live a long and healthy life. In the future I will try to refrain from assigning blame to anyone for their ills. I will remember that we are all in the same life raft and we have to hang on and help each other to hang on as well. If you are slipping out of the boat I will throw you a line and hold your hand while you try to climb back in. I will not tell you that you should not have leaned over the side.

Broken

An ice storm last Sunday took down many tree limbs on our property, one fell on the power line coming to our house. We have had no electricity for six days. Fortunately we have two wood burning stoves and a good supply of fire wood. A generator is keeping our refrigerator running and the well pump going when we need running water. The whole family was here for Christmas. We cooked our meals on the wood stove and dined by the light of oil lamps and candles. 

There is a tree in my yard, I am not sure what kind, but it shades our picnic table and one of my perennial flower beds. Over the years it has lost a branch here and there due to wind and age. With each fresh wound I wonder will she survive and continue to grow? Will this be the final assault that will end her life and force us to chop her down and add her pieces to the woodpile? So far she has rebounded every time, healing over and pushing out new buds each spring. Ice has covered the branches for the last six days. The added weight of all this ice has caused massive damage, taking down several large limbs. I wonder, will she come through this unprecedented attack? Or is she irreparably broken? I can see the broken branches as I lay in bed looking out my window, wondering, will I survive the repeated blows to my heart and soul?

On Christmas morning my six year old grandson came and snuggled in bed with me at four a.m., wondering if Santa had been here yet. I convinced him that it was much too early to go downstairs and look so he went back to sleep. My three year old granddaughter woke me up at 8:00 by shining a flashlight in my face and saying "Mamaw, Santa was here and I saw him fly away!" It is those precious moments that give me the courage to keep putting one foot in front of the other, to slap a bandage on the newest wound and wait for spring.

Reactions

It is incredibly interesting to observe the various reactions of people when they learn that you have cancer. I have heard "Oh my God" countless times. "I can't believe this" is a close second. One friend, after hearing the details of my cancer launched into a litany of her own ailments and I thought, "Really, your allergies are acting up? I'm so sorry to hear that." Several people assured me that I wasn't going to die. I hadn't really thought that I was until they mentioned it. Some relay their kind thoughts via family members, as in "tell her I am thinking about/praying for/love her. I have had many e-mails, the best ones make me laugh, like the friend who told of a rather botched attempt to comfort a friend, and let me know that if I needed that kind of help she was my gal. Men seem to have a harder time responding, but one male friend called and said "my heart is broken and I love you." Another called and said "I have not called because I don't know what to say, but I love you and you are a dear friend." See, he did know what to say.

Everyone says "what can I do?" Many want to offer advice, some of which is helpful, some is not. Those who have had cancer themselves always let me know that if I need to talk they are available. One friend saw me in the grocery store and just walked up and put her arms around me. Another friend came and dusted and vacuumed up the massive amounts of dog hair in my family room.

The worst response is none at all. Even though I know that it is probably because they just don't know what to say, it feels like they don't care. And then I remember that I have been guilty of the same thing, not calling because I have no words or don't want to intrude on their suffering. I remember when my mother passed away and a friend came over wanting to know what my plans were for a group that we worked together with. I asked "You do know my mother just died, don't you?" "Yes" she said. That was it.

As I listen and watch others respond, I have come to believe that we all react based on our own past experiences, or from our own fears. Our compassion gets all jumbled up with our anger and denial. We want to reach out and sometimes just cannot do it. We are all afraid.

Many times I hear people ask "why?" Why do all of these terrible things happen? I think they happen to bring us together. Tragedy allows us to see the good in others, it provides opportunities for us to give unselfishly. We find ways to share and love because that is all we can do in the face of senseless events. We are reminded that we are all one and that love is always the answer.

Primal Instincts

It's hard to tell people that you have a serious illness. Getting those words out the first few times is torturous. We have a primal instinct to take our wounded selves off into a cave somewhere, separating ourselves from the rest of the pack. Is it to protect ourselves in our vulnerability or to protect the pack? In the wild an animal who slows down the rest of the herd presents a serious threat, drawing predators who sense the opportunity to move in. I've watched my hens attack the weakest of their sisters, hence the phrase "pecking order." Whatever it is, it seems that the most natural thing to do is to go off and lick our wounds alone. Each morning I wake up and for one brief second all is well, then I remember the wounds and just want to stay in the dark and quiet where no one is asking questions or offering advice. In doing that we deny ourselves the comfort of those who can help us, who want so very much to take a little of the pain and worry from our shoulders.

It seems that we also have a deep seated instinct to feed people in a crisis. What is the first thing that we all think of when there is death, illness, or tragedy? Start cooking. The casseroles and chocolate cakes are comfort food that ease the burden of dealing with life on life's terms, and give the provider a sense that yes, there is something that they can do to help.

We need each other. We need to allow ourselves to be vulnerable, to reach out, to let others help us carry the load. It is love and kindness, like a roaring fire, that bring light to our darkest nights.

What Doesn't Kill You

They say that what doesn't kill you makes you stronger. That may be true most of the time, but sometimes what doesn't kill you leaves you stunned and bloody in the middle of the road, barely breathing and unable to get to your feet. And then as you lay there you are run over again and again and again. And then just when you think that maybe you can get up and at least move to the shoulder for a little respite the vile forces that are out to break you say "Oh, so you think you are so tough do you? Take this, bitch."

They also say that you do not get more than you can handle. I say bullshit. I say that often you get plenty more than you can handle - more than you can handle alone, anyway. It's only due to the love and support of so many people in my life that I am able to even crawl out from under the covers some mornings. Tomorrow will be one of those mornings.

My daughter had a scan on Friday, coincidentally at the same time I was seeing my surgeon. She has done this every three months since she was first diagnosed with cancer. The tumor in her lung has been stable for almost two years. We saw her doctor today for the results of the scan. The bastard has come out of hiding and is growing again.

Good Grief

So, it's pretty exhausting trying to process everything that has happened over the last few weeks. Grieving is a messy, tiring business, and I am definitely grieving. Grieving the loss of my invincibility, the loss of youthful good health, the loss of actual pieces of me. I shuffle back and forth between denial and anger - this can't be happening to me, I'll ignore it and it will go away and then it's just too fucking fucked up. Then I fall into depression - I just want to sleep. I haven't quite figured out how to bargain this away yet. I have moments of acceptance then go back to the anger or depression.

I have gotten a lot of phone calls, some I answer and some I do not. I let them go to voice mail because I just cannot talk about it for one more minute. I call people back when I feel a little more able to handle my own emotions along with theirs. My friends and family are all grieving with me and it can be like a giant sinkhole of emotion at times. I find myself being angry or hurt by the way that some people react or the things that they say (or don't say). Then I realize that I have to cut everybody some slack, especially myself, because we are all doing the best that we can in a shitty situation.

I learn over and over how important it is to take care of myself. When you spend your life taking care of other people, and animals, and situations, it can be very difficult to put your own needs first. I know that if I don't take care of myself I have nothing to give to anyone else. So this seems like one of the ultimate lessons in self care. I need to rest a lot. I need to eat especially well. I need to talk to the people who can listen to all of my insanity without judging or trying to fix me. I need to do fun things and laugh whenever possible. And evidently I need to keep writing.

Now What

So yesterday I thought that I could just relax and not have to think about the surgery until after the holidays. My doctor and I had a plan. I could chill out. No worries. Silly me.

Last night I had a dream that my husband did not want to touch my breasts after the surgery. I woke up feeling very sad. I read through the large packet of information that I came home with, which included a pamphlet on post surgery bras to help you look as close to normal as possible in your clothing. So very reassuring.

Then I started thinking about some of the decisions that I will be faced with post surgery, things that the doctor touched on in our consultation, but I sort of pushed to the back of my mind. She talked about radiation, spot vs. whole breast. She also talked about different estrogen suppression medications. I guess I need to do some research, I want to be well informed when I do have to make these decisions with her. I am a firm believer in doing the footwork, being prepared, but living life in the moment. Easily said, not so easily practiced at a time like this. I am hoping that women reading this blog will share their own experiences with me so that I have some real life information along with whatever clinical statistics and such that I find. 

Tonight I am going to The Healing Nest, where an amazing group of women provide support, comfort and love to other women who are going through treatment for cancer of all kinds. My daughter and I became involved with them when she was first diagnosed with cancer two years ago. These ladies are kinda crazy and beautiful and I love them. I never expected that I would be attending as anything other than a support person for my daughter. We have the dubious honor of being the first mother/daughter clients. Woo hoo.

The Surgeon

So, I like this doctor. She is older than twelve. She introduced herself by her first name, which is important because if you are going to be handling my boobs we need to be on a first name basis. She threw a lot of big medical terms around that I never heard before, but basically said that there was nothing remarkable about my tumors (which is good even though I like to think that I am remarkable). She drew a lot of interesting pictures and diagrams on a piece of paper that explained all of my options and possibilities. That's my breast on the left circled in pink for those of you who have been dying to have a look.

So, I will be having a bilateral lumpectomy with sentinel lymph node biopsies. We talked about radiation after the surgery, the possibility of needed chemotherapy if the lymph nodes are not clear, and long term estrogen suppression medications. I will be having the surgery sometime in January, working around some dates so as not to interfere with her vacation plans. It will be outpatient surgery, done at McPherson Hospital (I will always call it McPherson). That's so close to home she might as well just come on up here to the farm and do it.

I am glad that I have the holidays to keep me busy. My son is coming home from Boston for Christmas. All of my kids and grandkids will be around. I have so much to be grateful for. Oh, and I got a certificate for a free massage in the packet with all of my cancer information. That almost makes it worth it.

Fragile

It's early Friday morning. I've been awake for a couple of hours, laying in bed thinking. I see the surgeon at 10:00. I feel like I am going for sentencing. Lumpectomy, mastectomy, radiation, chemotherapy. Not any of which I care to consider. I am being sentenced and I try to sort out, what was my crime? I stopped smoking forty years ago. I don't eat meat. I try to eat right (except for the Fritos.) I don't use antiperspirant or dye my hair. I do not let myself get stressed out over every little thing. Of course, I don't exercise enough and I am several (I won't say how many) pounds overweight. I let two years go by without a mammogram.

I have never had surgery or a broken bone. I did have my tonsils out when I was six, but I don't think we can really count that, the doctor didn't cut me open. It was no more than having a tooth pulled. I am coming up on fifty-nine years and do not take any medication for anything. So you can see how I have come to believe that I am invincible. I have watched others around me suffer from various ailments and thought "that can't happen to me because I don't (fill in the blank.) Well, that was just so much bullshit. Now I have joined the rest of the human race, my life is fragile and unpredictable.

And more will be revealed.

The Results

The biopsies were done on a Thursday, so I had the weekend to get through before I would hear the results. I did some Christmas shopping and went to another meeting. On Sunday evening I was wishing that the weekend could go on for a few more days. I was not looking forward to the phone call. I tried very hard to be positive, but really wanted to stay in that place of not knowing. The truth is, I was sure that the news would not be good.

On Monday morning, just as I was getting into the car to take my dad to a doctor’s appointment, my phone rang. When I saw the number on caller i.d. I thought, “crap, this is it.” I answered and it was the doctor who had done the biopsies. She asked if I was in a good place to talk. I told my dad that I was going back in the house to talk to the doctor.

“The biopsies were consistent with cancer,” she told me. Invasive Ductal Carcinoma, the most common form of breast cancer. The spot that I had been concerned about on the left breast was grade one, the one on the right was grade two. She explained that they are graded 1 – 3, 3 being the most aggressive. “You are going to be fine,” she assured me, “but you need to see a breast surgeon and get this taken care of right away.”

She gave me phone numbers to call for an appointment with a surgeon. I hung up the phone and went to find my husband. He held me in his arms while I cried uncontrollably.

My dad was still waiting in the car, so my husband threw on some clothes and went to take him to the doctor. I got on the phone and made an appointment with a surgeon for the following Friday. I called my children and friends who had been waiting to hear. I cried a lot. I screamed a little. It was about ten degrees outside and I thought about just going out to the back of our property and letting myself freeze to death. I hate to be cold, though. I know I would be back in the house in no time.

The thing that always happens when disaster strikes, for me anyway, is that the love and support of friends and family serve to lift me out of my despair. I have my few moments of insanity, then remember that I am not alone. People want to help, they cook and clean and hug, and tell me they love me. They remind me how strong I am and that I will get through this.

So now it’s Thursday afternoon, and I see the surgeon in the morning. I am trying to make a list of all of the things I want to ask. Someone from her office just called to remind me of the appointment, like I could forget about it.

I am scared shitless. 

The Biopsy

On biopsy day we had to be in Ann Arbor at 7:30 in the morning. The traffic on the freeway was crawling and I became anxious about being late for my appointment. We were 15 minutes late and they took me right in. I noticed a clock radio in the room so I asked the doctor if we could listen to NPR during the procedure. After numbing my breast the doctor made an incision and used a device that sounded like a stapler to extract tissue samples in two different places, one on each breast. She also did a needle aspiration of one area on the left breast. The whole thing took about an hour and a quarter. There were two technicians assisting the doctor, and we started talking about kids, grandkids, the elf on the shelf and the tooth fairy. Before we were done we were cracking up about the trials of parenthood. It was not as bad as I thought it might be.

I was given post procedure care instructions, along with two ice packs to put in my bra. This might have been okay in July, but not in December. I left the hospital with a list of breast surgeons, and called my ob/gyn to find out who she recommended.

Now to wait 2 – 4 business days for the results.

Mammogram and Ultrasound

I was fine until the day before the mammogram, and then I started freaking out a little. I guess because I wasn’t going to be able to ignore it any longer. I just couldn’t face the thought of telling my children or my dad if I had cancer. I didn’t think I could deal with one more thing after my daughters diagnosis, my dad’s stroke a couple of months prior, another daughter involved in a fatal car accident, and losing my uncle to cancer; all in a four year span. I was tired and afraid. I went to bed early and fell asleep with my husband’s arms around me. I woke up feeling refreshed and ready to face the day.

I checked in at the Women’s Health Center of St. Josephs Hospital in Ann Arbor. I was soon escorted back to the area where you remove everything from the waist up and put on a lovely pink patterned gown, fastening it in the front. Then I was instructed to sit in a waiting room with several other women in the same state of dress. We all sat with our magazines or smart phones, checking Facebook for the latest status update. I looked around and wondered which of these women were here for a routine exam and which were anticipating something more serious.

I was finally taken into a small dimly lit room for the mammogram. Are they trying to create an atmosphere? How about some candles and Yanni playing in the background? The technician had warm hands and tried to be kind as she carefully adjusted my breast between in the machine and then smashed the hell out of it, saying “hold your breath.” The mammography machine loomed over me and hummed with each adjustment of position. Eight different images were taken, then she told me to go back to the waiting room while the radiologist read them. She came back in a few minutes and said she needed to do a couple of more images. Great, I thought. Two more images of my right breast and back to the waiting room. “Why my right breast?” I thought. It’s the left I’m concerned about.

Finally the technician took me to another waiting area for the ultrasound. Another tech showed me into a small room and had me lay on a table with my gown open. She squirted some slimy gel on my right breast and began to scan it with the ultrasound wand. I watched the screen as she performed the test. She stopped in two different spots, took measurements and notes, and then went on to the left breast. I am astute enough to realize that those dark spots she was focusing on were the areas of concern. I asked her if someone would be looking at the scans and talking to me about them before I left. She said absolutely. When she was finished she left the room and came back in a few minutes with a young doctor, and I do mean young. I swear she was about twelve. She explained that she wanted to take another look at a couple of spots on the ultrasound, so I lay back down while she did that. She told me that I needed to have four spots biopsied, and explained how that would happen. She asked me if I had any questions. I started to cry and said “I don’t even know what to ask.” I wanted my husband to be there with me instead of in the waiting room reading some old issue of Womans Day. She asked if I knew of a breast surgeon, that she thought I would need one after the biopsy. Obviously she was not feeling positive about the outcome.

A biopsy was scheduled for the following week, but in the morning someone called and said they could see me in two days. I felt relieved that I did not have to wait so long, and worried because they felt they needed to get me in so soon.

The next day I was a sobbing mess. Every time I talked to someone I cried and cried, wanting to just lay down on the floor and kick and scream. Telling my kids was the hardest part. I didn’t want to worry them. My daughters all cried with me. My son took it like a guy, very stoic and matter of fact. My dad immediately started talking about what the dogs had done during the day.

In the following days I stayed busy doing things around the house, cleaning out the chicken coop and putting up Christmas decorations. I went to a movie with a dear friend, and I went to a twelve step meeting, where I have learned over and over again to stay in the moment and not to waste today worrying about tomorrow.