The End of Chemo Anniversary

"I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next." ~ Gilda Radner

I've been catching up with blog friends I haven't been able to read lately. I need to stop for a moment to talk about yesterday. It was a bad, bad day and it took me until late in the afternoon to realize it. Realization should have started when my mom told me a couple of times early in the day to stop beating up on myself.

On the way home, she was talking about the 4th of July and it immediately reminded me that July 6, 2006 was my last day of radiation. Then I recalled that March 28 was my last chemo day. But then I wasn't sure...was it March 26 or March 28? I became obsessed (oh yeah, I never do that ) with verifying the date. Around 7;00 p.m. last night, I finally managed to find some written evidence that the date was correct.

Then it suddenly hit me. A year. As someone on my breast cancer message board told me, I've been through a lot. It made for a sad and somber evening. It's okay...just a part of coming to terms with it all. I allowed myself to grieve for the relinquishment of wholeness. I remembered it all. The diagnosis--in three stages. The mastectomy. The chemo. The radiation. It was all unbearable, so I chose not to bear it.

I haven't only changed physically. I know now, with complete certainty, that I can get through anything. Maybe my father's suicide should have enlightened me on my transcendent abilities. Now I know. It seems to have created a greater reserve in myself, a distancing from the hard events of life. I am invioable.

It seems I've permanently retreated into myself to shield myself against misfortune and pain. That doesn't mean I'm emotionally unreachable; as a matter of fact, I may be more open to love (in a general, nonspecific way) than ever before. I can survive love and loss. That knowledge liberates me, but it leaves me with an openness to love primarily on a non-specific basis. I have good will towards everyone. Close personal relationships seem even more unreachable. If you care about everyone equally, do you really care about no one? I don't think so. I hope not.

How have I changed? How have I changed? It's a question that's rather haunting and not fully answered still. There's a lot more grieving to be done, a lot more suffering to be worked through. I can survive it, though. I can survive anything.

Dreams of Working Out

I bought three new workout dvds this week. Two of them were Denise Austin videos and one was a yoga video. Oh how it makes me long to get back to working out. Sometimes I even start to believe that, after I leave work, I can go home and at least do some yoga. On my drive home, I always realize I'm not strong enough yet.

I'm still only working three hours a day, at most. I go home and have to lie down for about half an hour or so. That's a new development this week. Usually I just park my butt on the sofa and rest there, but this week has been taking a toll. I get that massive fatigue thing that makes my back, arms and legs ache.

I have been busier this week at work. I answered the phone for a couple of hours one day, since I was the only person here. I've also done some proofreading and updating the database I created. The big energy drain, though, was having to talk with co-workers. That takes enormous energy. I've already spent about an hour this morning, listening to a co-worker. He was funny, but I'm not sure it was humorous enough to justify the energy drain.

One of my colleagues just called to request a database revision. It's good to be needed.

Not So Helpful Anymore

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'm persevering in trying 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 panic 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, inch by inch. Rejecting the physical and emotional agony only makes things worse, because there is, after all, no escape.

"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 reconstruction surgery was not spent in the moment.

A couple of years ago after a conversation like this, I would have scurried off to find on the web some techniques for coping with pain and sent 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 now 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.

Getting Better All the Time

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 in the format they need. I've been pleading with my co-workers, beating my head against the wall, being generally frustrated and stressed about the whole thing. Finally, I gave them a reasonable facsimile of the type of data they requested. I've now washed my hands of the whole matter. It's tough to have to be back at work, but it's a whole lot better than losing my job because I'm never here.

I just started a new book, Touching the Void. It speaks to my 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. When I told her about it, my therapist tactfully pointed out the extremes to which I have to go in order to find bigger hardships than those I've faced all of my life, and that I continue to battle.

My emotional state has improved a lot. I'm able to crawl out of my black hole into a slightly smaller one and stop being so 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

Right after breast reconstruction surgery, there's a significant danger that the breast tissue will die because of insufficient blood circulation. That can happen because one of the micro surgically stitched veins has come apart. Should that occur, you have to go back to surgery immediately to repair the problem.

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.

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. But I digress.

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 of his own. 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. 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.

Finally

My surgery was last Monday. It lasted over eight hours and involved some "fancy stitching," according to my plastic surgeon. They make new breasts from several places--back, butt or tummy. My tummy seemed to have the most amount of tissue available, but I'm not a very large person so it was hard to come up with enough tissue. Nonetheless, I now have a new breast stump. I also have a very, very painful wound on my stomach. I don't know if people do tummy tucks anymore or if liposuction is the method of choice, but I'd never do this just to have a smaller tummy area.

I'm not sure what they did to me in the operating room, but my right arm was bruised from the wrist to the elbow on the inside of my arm. They used my right arm for the i.v. lines. I'm right handed, but because my sentinal node biopsy surgery was on the left-hand side, they will never be able to use that arm for blood pressure checks or needle sticks of any kind. When I woke up in the recovery room, I thought I heard someone say "He's dead." That seems pretty dramatic, so I could be wrong. People do die in surgery, though, so who knows.

The pain was extraordinary and immediate. My mother said that, as they wheeled me out of the recovery room, she could see tears rolling down my face. They just parked me in my room, hooked me up to all of the i.v. stuff and left me to my own suffering. My mom was with me, though, so I wasn't completely alone. I had a self-administered morphine injection (who knows if that's the right word) system. I had a button that would periodically light up. Whenever that happened, I could push the button and have more morphine. I was always in pain, anyway, no matter how many times I pressed the button. Intense, inescapable pain.

Around the middle of the night on Monday, they came for one of their regular vital signs/ wound inspection visits, turned me over and found I'd been bleeding for quite a while. The i.v. had slipped or something and I was lying in my own blood. "You've lost a lot of blood," one of the nurses said. For some reason, I took this as a criticism. The room filled with people and someone came by to move the i.v. line to the bend of my right arm. Then they had to move me to get me off of the bloody sheet. That whole process was indescribable. There was nothing to be done for it, though, other than to try to hang in there. After that, I didn't have any more trouble with bleeding, but there were more i.v. problems later on. I'll have to get to all of that later.

I'm completely exhausted. I got out of the hospital on Saturday, rode home for five hours in the rain on Sunday and I've been in too much pain to write until now. Thank you so much to everyone who checked in and sent me messages! I haven't had the time to read through all of them, but I feel so grateful that there are people who care about how I'm doing. I'm not sure if I'll be online later. It's hard to judge my future energy level. I'm fine, though, so if I'm not around it's just because I'm in pain or tired. I'm thinking of all of you and it cheers me up so much! See you later.