It's Expensive Being Me
"Grief is depression in proportion to circumstance; depression is grief out of proportion to circumstance. It is tumbleweed distress that thrives on thin air, growing despite its detachment from the nourishing earth. It can be described only in metaphor and allegory...Grief is a humble angel who leaves you with strong, clear thoughts and a sense of your own depth. Depression is a demon who leaves you appalled." ~ Andrew Solomon, The Noonday Demon: An Atlas of Depression
I saw my psychiatrist yesterday, just to check in with how I'm doing. I came away with a new antidepressant. Good news, bad news. I knew that something had to be done. I've been having significant symptoms of depression since my surgery, though I don't cry as much as I did the first five weeks. I've been unable to concentrate, not interested in food, sad, tired. I've lost about ten pounds since before the surgery. I'm still in some pain and I think that I tend to cry when I'm in that part of the day (after 11:00 a.m.).
On the other hand, my goal is to decrease the amount of medication that I'm on. I will probably never be able to completely stop taking antidepressants. The years and years of repeated, intense trauma have left an indelible mark. There's a genetic tendency for depression in my dad's family. Well, there's a genetic predisposition for just plain crazy in my dad's family.
I'm okay with that. I'd just like to not have a handful of pills to take every day. That won't be happening for a while yet. I just have to work on taking care of myself, physically and emotionally. I have to continue to eat, whether or not I feel like it.
I haven't felt like eating in a very long time. My doctor asked me if there was some way to make food more palatable. The answer is no. I may be hungry and I may be having something I generally like, but once it's in front of me, I completely lose interest. I can't continue to lose weight.
All of these drugs take a toll on my budget, too. To quote another Texas girl, "It's expensive being me." In so many ways.
"It
I saw my psychiatrist yesterday, just to check in with how I'm doing. I came away with a new antidepressant. Good news, bad news. I knew that something had to be done. I've been having significant symptoms of depression since my surgery, though I don't cry as much as I did the first five weeks. I've been unable to concentrate, not interested in food, sad, tired. I've lost about ten pounds since before the surgery. I'm still in some pain and I think that I tend to cry when I'm in that part of the day (after 11:00 a.m.).
On the other hand, my goal is to decrease the amount of medication that I'm on. I will probably never be able to completely stop taking antidepressants. The years and years of repeated, intense trauma have left an indelible mark. There's a genetic tendency for depression in my dad's family. Well, there's a genetic predisposition for just plain crazy in my dad's family.
I'm okay with that. I'd just like to not have a handful of pills to take every day. That won't be happening for a while yet. I just have to work on taking care of myself, physically and emotionally. I have to continue to eat, whether or not I feel like it.
I haven't felt like eating in a very long time. My doctor asked me if there was some way to make food more palatable. The answer is no. I may be hungry and I may be having something I generally like, but once it's in front of me, I completely lose interest. I can't continue to lose weight.
All of these drugs take a toll on my budget, too. To quote another Texas girl, "It's expensive being me." In so many ways.
The Path of Wildness
"We need the tonic of wildness, to wade sometimes in marshes where the bittern and the meadow-hen lurk, and hear the booming of the snipe; to smell the whispering sedge where only some wilder and more solitary fowl builds her nest, and the mink crawls with its belly close to the ground." ~ Henry David Thoreau
The Good Boy is gone. I came by yesterday a couple of times and he was shockingly thin and lethargic. I petted him for a while and was grateful for the purrs. I had an appointment with my psychiatrist today, so I got up extra early so I could come check on him. I couldn't stand the thought that he might have needed food and wondered where I was. I checked again when I got back from my appointment.
He was strong and gentle. He was courageous and intelligent. His chose the path of wildness and he chose to allow me to help him. I was honored. He would disappear for a few months, a few days or even for a year and then turn up, hungry and vocal. He could have chosen to hang around and be fed. No need to hunt for his own food. He chose the path of wildness.
Since the time he was just a kitten, he would cross the busy street outside my office and head off into a field that surrounded the old airport. He could be a real cat there--hunting prey, beholden to no one. He must have had many adventures, but I know nothing about them. He chose the path of wildness.
After many years, he allowed me to pet him. His demonstration of trust and affection kept me going through some very tough chemo times. He was there for me and I tried to make sure he could always rely on me. We understood each other.
When he started looking really sick, I wished so much to do something for him. But he chose the path of wildness and that path can be hard and lonely. When death came, I'm sure he met it with dignity and courage.
He knew I loved him. I think he loved me. I'm deeply honored that he allowed me to be his friend.
My Grandmother's Shoeless Life and Walking Through My Own Morphine Dream.
"All God's children need traveling shoes." ~ Maya Angelou
I woke up this morning thinking of my grandmother. One story in particular. My mom said that my grandfather would never allow my grandmother to have shoes. And that when one of my aunts, when she was a teenager, gave her mom some of her own shoes, my grandfather was enraged. The story makes me so sad. My grandfather was never around and so my grandmother had no one to rely upon to feed her enormous brood of kids. They all sharecropped; it's all a woman and kids could do in the 1930's. I can't imagine what picking cotton would be like without shoes. I don't know why I woke up thinking about that. It could be I was dreaming about her, I suppose.
Last night, I had decided to talk about my experience with morphine in the hospital. I was watching a television program about methamphetamine addiction and it reminded me that I thought a lot about addiction during the first couple of days after surgery.
I was a teenager in the 1970's, a time when all kinds of drugs were around in college and when lots of kids used them for a variety of reasons. I don't think I ever knew anyone who had heroin or used heroin, though I can't be sure about people using. I always knew that heroin would be the death of me. I was always hypervigilant and revved up. The possibility of letting go and relaxing was very inviting. Too inviting.
I never used heroin. After my surgery, though, I had morphine to control the pain. It never controlled the pain, though. I remember thinking, "Why do people like this stuff?" It just made me feel mentally sluggish. I phased in and out of consciousness, making it difficult to carry on a conversation or focus on any activity, including eating. Of course, I'm sure I wasn't using as much morphine as recreational users.
When they made me get up and walk around the nurse's station, I was on a combination of morphine and dilaudid. I kept passing people who commented on how I looked like I was feeling no pain. It really made me angry because I was in excruciating pain. It just wasn't reflected on my face.
I'd get about three-quarters of the way around the circular open hallway, thinking that I was straight in front of my room. It never failed. Then I'd look at the room number and realize I was still a long way from my room. I only made the trip a couple of times before they discharged me.
When the nurses told me I was going to have to get up and walk the third day after surgery, I shook my head at them. I just didn't think that was going to be possible. As nurse after nurse kept insisting I was going to have to do it, I gradually managed to wrap my mind around the reality of the situation. "It'll be okay," I said, "I have a high threshold for pain."
The first day I walked around the nurses station, I encountered the nurse to whom I had made that comment. She looked at me with a lot of compassion in her face, smiled and said, "You're doing good. High threshold of pain." For some reason, that felt very comforting. Far more comforting than the morphine ever was.
Looking for a Panacea
I had a dentist appointment yesterday afternoon and I have an appointment scheduled with my psychiatrist for Monday morning. I'm so tired of seeing doctors. After these appointments, I won't have another until April 17, when I'll go back to see my plastic surgeon. My oncologist is in May and my oncology surgeon is in June. It would be great if I could get all of these appointments jammed in together in one week just to reduce the travel time, but that doesn't seem to be possible.
Recovery is going well. I'm almost all healed in both areas. The tummy incision is still healing on the inside, so I still have to be cautious about what I do. I'm still having some pain, but it's very bearable. My depression seems to be lifting. I've managed to crawl out of the deep, dark hole into a slightly sunnier hole.
I had a conversation this morning with a co-worker who's having some pain issues about how I've dealt with all of this, physically and emotionally. Without using the name, I told him that I practiced mindfulness meditation and that helped me get through most of the past year and a half.
Paying close attention to physical and emotional states definitely helped me get through the frequent anxiety attacks after diagnosis. It was also useful during chemo and radiation therapy. "This is what it feels like..." experience skin, muscles and bones one tiny bit at a time.
"I don't see how that helps," he said.
I told him I don't know how it helps, either. It's a paradox. We all have to find our own way of dealing with intense, ongoing physical and/or psychological pain. It's not magic, unfortunately. I try to stay focused on the moment at hand. Even if it's a really crappy moment. I have to confess, though, that the week after my surgery was not spent in the moment.
A couple of years ago, I would have scurried off to find on the web some techniques for coping with pain and send my co-worker the urls. I'm just not that helpful anymore. This co-worker would like a panacea that requires no work on his part and I think that, if he can't put some effort into it, neither can I.
I don't think I'd offer help under any circumstances. Sometimes you have to know when to take care of yourself. Sometimes that takes all the physical and emotional energy you can muster.
Things Are Looking Up
Things are looking up. It's a warm, sunny day and I just completed a project that has been making me crazy for about a week now. One of our clients requested some information that...oops...we don't keep track of it that way. Our software won't allow us to keep track of it the way they need. I've been pleading, beating my head against the wall, being generally frustrated and stressed about the whole thing. I gave them a reasonable facsimile of the type of data they requested. I've now washed my hands of the whole matter.
I just started a new book, "Touching the Void." It speaks to the need to find people who've overcome tremendous odds. Their struggles make my own difficulties seem small in comparison. My most recent inspiration came from a program I watched on The Learning Channel about a woman who was born with tiny little legs and no arms. She became pregnant accidentally. It chronicled her journey through pregnancy and the birth of her son. She's tough, determined and a very loving mom.
My emotional state has improved a lot. I'm able to crawl out of my tiny black hole and stop being depressed and miserable. You know how I hate that feeling sad thing. I'm sure I'll revisit it, many times, but I'm grateful for the break. I'm now trying to re-learn how to stand up straight. If I could start doing yoga again, it would help tremendously, but my energy level is miniscule. Speaking of which, time to go lie down for a while.
Doppler Radar
The way they checked to make sure the tissue was still living was by using Doppler radar. Isn't that astounding? I don't understand how it works, but the nurses came around about every half hour for a while and moved a little hand-held device over the new breast stump.
There was a lot of static, but when they figured out the right places to check, there would be a sound a little reminiscent of a heart beat. It was incredibly noisy and the nurses always had trouble finding the places to check, even though my surgeon had marked them with x's with his handy Sharpie.
I'm just astounded that anyone even thought of using radar to check on the quality of transplanted tissue. After the first 24 hours or so, they didn't need to use it anymore. The doctors and nurses could tell the tissue was still living by touch.
I'm Lucky
I'm back from the follow-up with my plastic surgeon. He thinks things are going well. I'm learning to stand up straight again. It's quite a challenge. There's that painful tug all the time that reminds me skin and tissue have been stretched very tightly.
Hubby seems to still be sniffly and I've had a bout of hay fever myself. It was worst last week and by the time I left Houston on Tuesday, things had improved dramatically. I'd just like to note that I went to work every day, anyway. Now my mom has it. Everywhere I go, people are coughing and sneezing. It's cedar fever time and the winds are blowing. Cedar fever might as well be a cold because it feels the same.
I'm still emotionally edgy. My mom thinks it's hormonally based. That's possible. I think it's primarily a coming to terms with where I've been and where I am now. I still can't wear regular clothes and there's still a lot of pain to come. I had a follow-up with my radiation oncologist today who wants to see me again in six months.
I don't know why I keep thinking that someday I'm going to wake up and not have to think about breast cancer again. That is never going to happen. I thought I'd be through with the radiation oncologist today, but I was wrong.
More and more I feel so alone. Attempting to reframe your life after a catastrophic illness is a hard and lonely process. That's why they have support groups, I suppose. I guess I'm not feeling quite that lonely yet.
Last night I was thinking about what, if anything, I've learned in the past year and a half. I've learned that sometimes I'm just going to have to feel whatever I'm feeling. There isn't necessarily any distraction sufficient to get me through those emotions I hate so much. I'll do virtually anything to get away from feeling sad. It's a paradox, because I spent so much of my life feeling sad. I'd already developed some great coping skills that allowed me to continue to function, no matter how down I got.
I've learned how to cope with much more pain than I'd ever before experienced and for a much longer time. I've learned that there are many people who live every day in far greater physical agony than I've ever experienced. Somehow they manage to do so with incredible grace, courage and humor. Some of those people are children.
I've learned that I'm a lucky person in many, many ways. I'm still here and I've been healing physically very quickly. There are many people who have offered support and made me feel very cared for. Some people don't have that luxury. I'm lucky every day I get up and see the sky, every day I have enough food, every day I have a place to live. I'm lucky every day that I don't have to get up and face treatment again.
The George W. Bush is a moron section will return soon.
Good News
The good news is that my Good Boy is still with us. He's been eating more and he's been a little more active. I left a soft towel for him to sleep on under one of the kitty shelves and I noticed he's been using it. That cheers me up immensely. He's open to lots of pets and he's been eating a fair number of soft salmon treats every morning and afternoon. I only wish I could do more for him.
My husband believes I don't hold him in high regard because I suggested that he might, with a cold, to to work. My friends here point out to me that men are babies. Yes, they are. There's something about a year and a half of breast cancer treatment that makes me a little less sympathetic right now. And then it makes me feel guilty. How could I possibly force him to go to work when he has a cold or hay fever or whatever? I'm just emotionally mushy, I guess.
I have to go back for a follow-up appointment on Monday, so I'll be missing in action Monday and Tuesday. I have every reason to believe that things are going very well. The breast stump has stopped looking quite as stump-ish. The wound across my lower stomach is healing well.
That's about all I can say at the moment. My mom is here to pick me up from work. See you on Wednesday.
Welcome to my World
Hubby and I seem to be in the midst of a disagreement. I say "seem to be" because I'm not angry with him, but he left yesterday without a hug and didn't call me as he usually does at lunchtime. I'm alternately hurt and infuriated. Of course, those tend to be my predominant emotions all the time, so I guess it's just business as usual for me.
Hubby has a new job that started last Monday. He had a previously scheduled performance responsibility on Saturday, so he went in late to work on Friday. I think it was about an hour and a half. The performance went well, by all accounts. I couldn't go because I'm still in daily pain and I get worn out very quickly. My stepson came to town for the performance and they spent some time running around together. Stepson came by to spend about an hour with me.
Hubby mentioned over the weekend that he thought he was getting a cold. Monday, he went to work as usual. On Tuesday, as he walked through the living room sniffling, he told me that if he wasn't feeling better in a couple of hours, he was going to call in sick. "I'll just knock this thing (the cold) out," he said. I was feeling optimistic and didn't take the comment too seriously.
I went to work and, when I got back, I went upstairs to see how he was feeling. There he was, lying in bed without a stitch clothing on, huddled up under the blankets. "I have a little temperature. I'm not going in today. I already called my manager." I turned around and walked out of the room. They're in the middle of training and last week, he called to tell me he didn't think he could get the system. That's excellent. Perfect time to take to the bed.
Around 4:00 (when he should have just gotten to work), I went upstairs, told him my mom was going to the grocery store and asked if he needed soup. Hubby requested chicken noodle. I just couldn't stand it. I told him that I was very unhappy that he was staying home. I pointed out that I've worked through chemo, radiation and I'm beginning to transition back to full time after my reconstruction surgery.
I went back downstairs, my mom left to go to the grocery store and then I heard the water in the bathroom running. He took a bath, got dressed and left without even making a sandwich. I'm pretty sure I was supposed to feel badly about this.
Yesterday, I asked him how he was feeling and he said "bad." Note that he did not ask me how I was feeling. Later, he was at the computer and I went over to rub his shoulders. I mentioned that I have a bit of a sore throat, too.
As he was getting his stuff together, I got some tiny packs of Kleenex and dropped them in his brief case when he was out of the room. He got ready, and said, "I'll see you tomorrow," as he walked out the door.
As I noted before, I was alternately infuriated and heartbroken. I keep trying to stay with that angry thing, because I think that's probably the saner reaction. He clearly doesn't understand that grown up boys and girls have to go to work when they're a little sick. If they have the flu, they get to stay home, but for a cold or hay fever? No. Apparently I'm a bitch for pointing this out to him in the nicest way I could. Trust me when I tell you I could have been brutal when I found him holed up in bed.
I'm not sure whether he just thinks I'm angry and isn't interacting because of that. I was friendly and concilliatory, though, so I doubt that's the case.
I considered writing him a note and leaving it on the kitchen counter, asking if he's angry with me. I vetoed that thought every time it came up last night. Or I could just leave a note that says: "Hate your job? Bored? Not feeling well? Welcome to my world."
It's Alive
I'm back at work today! Yes indeed, boys and girls, I am sitting here with cable access, being annoyed by a co-worker. It just doesn't get any better than this. I came in yesterday, too, but for only one hour. I expect to be here an hour again today, but at least I'm out of the house and attempting to be productive.
One of my co-workers needs me to fill out a form for a client's safety department in order for us to be an approved provider. I attempted to open the file and couldn't because it's corrupted. I called her (she's downstairs and I just can't do the trek) and asked her if she could print it out. Silence. I'm waiting, waiting, waiting. Silence. She doesn't know if she can open it. Silence. I have no idea what she thinks I can do about this. Finally, she says that she'll try to open it, but if she can't she'll have to forward it to the IT guy to open it.
Being productive has its down sides.
It's a marathon, not a sprint.
Sometime early in my treatment for breast cancer, I saw an M.D. Anderson oncologist who had been diagnosed himself with a rare type of cancer. He said, "Cancer is a marathon, not a sprint." "Oh yeah," I thought. "Of course it is." I knew I'd be having a mastectomy, several months of chemotherapy and a course of radiation treatment. Seemed like a marathon to me, but a marathon I was steeling myself to get through. I thought I had gotten through it.
It wasn't until the reconstruction surgery that I really hit the wall in the marathon. Forcing myself to go on requires more strength than I think I have on any given day. I just sort of wander through life in a daze, focused on pain. I sit on the sofa. I lie down on the bed. I sit on the sofa some more. This takes stamina. It takes stamina to continue to feel the pain and not be able to crawl out of your own skin. If I could just take a break from my body, I could get back to the suffering with renewed spirit.
The people in my life tell me that it's no surprise to them that I'm feeling this way. I guess what I'd truly like is for someone to say something that will make this all more bearable. Telling me they're not surprised isn't it. I'm surprised. I thought I had endless stores of patience and stamina to call upon. I've been practicing for this all of my life, really. Unfortunately, it turns out that I didn't have quite enough practice, after all.
The sun is shining here today. That's something good. I still have hair. That's pretty good, too. Ditto the new breast stump. Every day I look for things to be grateful for and every day I can find quite a few. Sadly, after I've counted them and ruminated on them, I find myself back where I started. I've hit the wall and there's at least another ten miles to go.
A Tall Order
I'm braving the torment of slow dial up connection again. I need to get back to work if for no other reason than slow-loading pages drive me insane. Thank you thank you to everyone who sent good wishes! I can't tell you how much it means to me.
My Good Boy is eating a little more now, so I'm a tiny bit less worried. Last night the temperature was down into the 20's. I know that compared to other parts of the U.S. that's balmy weather, but for stick thin feral kitties, it makes for a very cold night.
I got out yesterday to go to therapy and, by the time I got back, I felt like someone had taken sandpaper and rubbed the insides of my stomach. After I took some pain medication, it felt like the sandpaper was a finer grit. The pain never goes away completely and, considering the enormity of the surgery, that's to be expected. I have a high threshold for pain, so I'm mindful of how lucky I am in that regard. I'm healing well, also. My surgeon was really pleased with my progress. (I say this like I have anything whatsoever to do with it.)
My husband has a performance tonight, so he's been rushing around all week. Rehearsals and work (yay for a job!) have kept him really busy. We haven't had time to talk much. My stepson will be in town later today. He and his girlfriend are staying at a hotel, so I probably won't see them today. I was going to try to go to the performance tonight, but that wouldn't be a good idea, I know.
My stepson is drinking far too much. When my husband talked to him on Wednesday, Stepson was at a bar for last call. He was with his girlfriend and a former band mate who's had some very serious addiction issues. I know he had a heroin habit for a while and I think he abused some other types of drugs but I can't remember what they were. I'm very distressed about this situation. I'm angry with my stepson. He doesn't have a job, but he's at a bar getting absolutely hammered. Hubby said Stepson kept saying the same things over and over. Hubby is a little annoyed, too, it seems.
I'm just always terrified that Stepson is going to go home, pass out and aspirate his own vomit. He could die very easily. Even if that doesn't happen, he's killing himself slowly with the damage he's doing to his body. Stepson still thinks of himself as a "kid," but he's pushing 40 now. He needs to pull himself together and get on with things. Get a full time, steady job. Get some training so that he can actually support himself.
I'm so physically and emotionally vulnerable right now that I really have to work at not getting into a codependent relationship with him. I constantly remind myself that this, like so many other things in my life, is not within my control. Most likely he's just going to have to find his personal bottom in order to be motivated to quit. His mom is going to move back to the same city sometime in the near future and I'm hoping she can keep an eye on him. Unfortunately, she has her own alcohol and drug issues herself.
So there you are. I guess the lesson I'm learning now is the same one I've been learning ever since I was diagnosed--I'm not in control here. The other lesson is that sometimes I have to put myself first. Right now I have no choice. It's a hard lesson to learn, but I suppose I'm going to have to keep on learning it until I get it. I'm trying to stay open to whatever gifts may come from this ordeal. Sometimes that's a tall order.
Take a Deep Breath and Go On
On Monday, I had four drainage tubes removed. It's amazing how much better I feel without five inches of plastic tubing stuck into my body in four places.
When I finally went over to my office after the ice storm, I found my wild, gold Good Boy looking very emaciated. He's my favorite kitty. We've known each other for over 10 years now and, though he likes to leave the comfort and security of a guaranteed meal to roam wild across the street at the former airport. He was gone all summer and when he came home, he was a skinny guy. He always loses weight during his wild times, but this year he hasn't been able to gain the weight back. I think he probably either has parasites or feline leukemia. Maybe both. The ice storm was hard for him and I can tell he's not well. I've cried about it every day for three weeks now. Yesterday, I tried to capture him so I could take him to a vet, but he got away from me. It was heartbreaking. He's always been able to trust me and to count on me. I'm sure he felt betrayed. I was afraid he'd leave and never come back, but I went back late yesterday afternoon and there he was. He let me pet him a little. I worry that the struggle to get away from me cost him precious energy he needs to survive.
The nature of life is suffering. Eventually, we all become ill, we all get hurt, we all lose everyone and everything we love. Love requires us to open wide our hearts to this suffering and embrace it, time and time again. I'm willing to walk through the pain in order to receive the blessings of love. This is one of those times when love will be painful.
Over the past year and a half, I've learned to let go of the illusion of control. Whatever happens to me is God's will and my job is to get with that program. I can do that. I do that every day. It's not so easy to do it when it involves someone I love. I won't be able to protect my Good Boy from pain, from the cold that's coming this weekend. I'll do what I can to create a place for him, but none of this is truly within my control. I'm so, so sad.
Aside from that, I'm still in a lot of physical pain. My absence here has less to do with the pain than the fact that I don't have the luxury of cable access. I just waited a good five minutes for this page to load. I am not, by nature, a patient woman.
This surgery has been the most difficult part of my treatment. I feel well enough to struggle with my physical limitations. I can't do very much for fear of tearing the stitches that hold my stomach together. My doctor has pointed out to me several times that he had a very difficult time getting it to work. I have to be mindful of what I do. My patience and will have been used up getting through all of the other parts of my treatment. Sometimes I don't feel I can continue. I don't have a choice, though. I must continue.
My friends and family tell me that it would be very odd if I weren't down at this point in my treatment. Unfortunately, I have to live inside this body and it's not so easy for me to accept the inevitability of feeling bad. I take a deep breath and go on.
