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Ex-Pat remains in the hospital, and as I discussed yesterday, I have started the clean-up process in my old house.
It is terrifying.
I don’t understand how someone can let things get this dirty. I chided Kelsea about it last night (nice welcome home, huh?) and she said that she never touched half of the stuff in the house – which sounds just like her Dad. My response? Whether you touch it or not, you still live here. So there.
I won’t gross you out with all the details, but suffice it to say that when you have two dogs and two cats, love to cook, and live by a creek and across the street from a cow pasture, you just have to realize that hair, dust, and grease can transform some things into creations worthy of Salvador Dali if you don’t stay on top of it. I’m so far under it in this clean-up process that it’s hard to breathe.
But progress was made last night. Several surfaces were cleaned and shined. One carpet, while not salvageable, was at least improved. Walls and ceilings were partially de-cobwebed. A load of laundry was done. The freezer was cleaned. The kitchen table is 90 percent excavated. I have made some decisions about some of my things – what to take to my house, what to leave here, and what to throw away.
This cleaning process became more amenable for me when I realized that this is another stage of leaving my old life behind. When I moved out in 2008, I took things willy-nilly, at random, because I was shocked at what I was doing. I was actually leaving him. I would grab a random stacking file here, a cookbook there, but there was no real packing. Some of my clothes are still in his closet. Which is beneficial when I housesit, but perhaps not helpful for either of us in making a full-fledged parting. Although he has been passive-aggresively letting the cats pee on my clothes that find their way to the closet floor. Grumph.
I talked to him today, and told him what I was doing,and he said not to go crazy on the cleaning. Since the house is half mine, and in the state it is in, I am disregarding that and doing what I think is right. He may be coming home soon – depends on his fever and blood cultures – and will have a home health nurse coming periodically to help him through six weeks of IV antibiotics through a picc line. It’s my opinion that cleanliness is critical at this time. Dog hair +picc line = back to the hospital.
Kelsea, meanwhile, is embracing the cleaning with all the enthusiasm a teenager on spring break can muster for such an activity. Get what I’m saying? Yippee.
But as dear Ceciliag commented on yesterday’s post, this cleansing will be good for all of us.
Assuming we survive it.
I have an unusual divorce. In many ways, it is good. Ex-Pat and I get along pretty well most of the time, as we are committed to our 15-year old daughter. The first year was tough – he was angry, I was sad, it was awful at times. But now, when it gets awful, I can leave, or hang up, or whatever. I don’t have to put up with being berated or belittled. And we do help each other out with things from time to time. We’re better unmarried than married.
He has not moved forward in his life. I have. He is very supportive of my relationship with MKL. He wants me to be happy. But he has done nothing in his life. He hasn’t learned anything from our divorce, hasn’t grown, pursued another relationship, devoted himself to a job or a dream. He has just bowled and spent money and alienated nearly every one of his friends. His support system – on which he calls rarely – consists of me and Kelsea. That’s not good.
He got a sore neck about 45 days ago. It became excruciating. He had horrible back pain. He could barely move. He was miserable, and miserable to be around. He went to the doctor at th VA twice, and they didn’t diagnose him, just gave him painkillers, which didn’t help much. I finally insisted he go to the doctor again, and that I go with him to advocate for him. I couldn’t stand how he was being around Kelsea and I was worried. He’d lost 15 pounds in a month, and reminded me of how my mother suddenly lost a lot of weight before her final cancer diagnosis.
So on Friday morning, we went to the VA. And while I’m glad it’s there to help veterans, it was about the most depressing place I’ve ever seen. To give you an idea of how poorly Ex-Pat was doing, a fellow veteran in the waiting room mistook him for a World War II veteran, which gave me quite a giggle.
The appointment with the doctor was okay. I insisted that he come clean about his excessive drinking, and the amount of over-the-counter painkillers he was taking.The doctors listened, looked at x-rays previously taken, and said he had some arthritis in his neck that might have just finally started causing the pain. Hmmm. I was suspicious, but the doctors agreed to get him to a primary care doctor for more visits, and to schedule an MRI to see if there is any soft-tissue issue.
But as we were wrapping things up, Ex-Pat got woozy. He thought he was going to faint. They took his blood pressure: 87 over 51. And off we went to the Emergency Room. That was Friday. They decided to keep him overnight because his blood pressure wasn’t coming up. They said he either wasn’t producing blood or he was bleeding “somewhere”. Overnight, he spiked a fever. They ruled out leukemia. On Saturday, his fever was down, but his blood pressure was way high. They kept him in another night. He had an MRI, which was fairly normal. But they discovered bacteria in his blood, so he went onto massive antibiotics. This morning when I talked to him, he said they were keeping him another day. Now I can’t remember why, but I think they’re trying to figure out if it’s related to his long-term mitral valve prolapse. He’s on fab painkillers, so he’s happier. But they still won’t let him go.
So I’m at his house, to tend to the animals. (Roscoe is back to his old self, by the way.) I can’t sleep in our old bed, because it’s covered with laundry. There’s no food in the house, and a counter full of dirty dishes. And I’m in tender shape. I help people who need help. It’s who I am and what I do But I feel like we are crossing boundaries that our divorce should have solidified. It is disturbing to me. It is disturbing to MKL, and I can understand that. I am still half owner of this house (that he has let fall into as much disrepair as he has let himself fall) and the animals, and Ex-Pat is still my daughter’s father. (She, by the way, is in the mountains with a friend for spring break.)
And it is upsetting. When they mentioned cancer during his exam, I got nauseated. Seeing him degenerate like this has brought back all those feelings about when my Mom got sick, and I cared for her, and she died. And when the Captain got sick, and I lost him. Which were both around the same time. I find myself holding back tears and saying out loud to myself, “You’re all right. You’re ok.” And this makes me feel stupid. None of this is happening to me. It’s happening to Ex-Pat. I am fine. Inconvenienced. Worried. But fine.
I guess I still have some work to do.
When my Mother died, she had her brain autopsied. This is not customary, even in cases of extreme cancer, such as she had. She had been part of a long-term brain study and the last piece of the study for any participant was to agree to have this procedure done upon death. I knew about it on a surface level, but when she died, it was the farthest thing from my mind. Fortunately, E-Bro knew what needed to be done and did it – putting ice packs around and behind her head until the funeral home people came to take her away. I assume that E-Bro then gave them some instructions, but after helping get her into the body bag, I really lost track of everything.
All maudlinity (yes, thanks, it’s my own word) aside, this brain autopsy showed that she had Stage 4 Alzheimer’s Disease. Alzheimer’s has 7 defined stages; Stage 4 is considered to be mild or early-stage. In this stage, according to the Alzheimer’s Association website, symptoms may include:
- Forgetfulness of recent events
- Impaired ability to perform challenging mental arithmetic — for example, counting backward from 100 by 7s (hmm, could I do that now?)
- Greater difficulty performing complex tasks, such as planning dinner for guests, paying bills or managing finances
- Forgetfulness about one’s own personal history
- Becoming moody or withdrawn, especially in socially or mentally challenging situations
My Mother didn’t really have any of these. A couple of months before she died, we noticed a few things – she would forget what color piece she was in Parcheesi or something like that, but we’d laugh about it. We both figured it was just a matter of normal aging. She lived for three months after her massive cancer diagnosis, and it wasn’t really until the last few weeks that I noticed something odd. I remember us discussing if perhaps the cancer had spread to her brain. We both considered it a possibility, but decided there was no point in finding out. It didn’t matter.
In hindsight, I can see that all of things we laughed at and thought might be brain cancer were symptoms of Alzheimer’s. Due to her excellent mental hygiene, we never even considered it. My Mother was an insatiable reader and never failed to do the crossword puzzles in every paper. She was one of those people who could do the New York Times crossword puzzle in ink. She also kept a journal every day for decades. She noted conversations she had, what she did, what we kids did, what she ate, thoughts, appointments. She made a point of remembering everything. She was always learning, keeping her brain fresh. This is one of the things I’ve heard – that keeping your brain awake and buzzing keeps things like Alzheimer’s and dementia at bay. I hope that’s true – I wonder what the rate of Alzheimer’s is among writers?
Well, as you’d imagine, my Mother’s diagnosis is a concern for me. I had a mild closed-head injury many years ago, and after that, I went through a long period of forgetfulness, and an occasional inability to remember words. I would look for a word in my head and it was like someone had literally erased the word from the blackboard on which my brain kept it written. That improved over time, but I’ve noticed myself being more and more forgetful over the last two years. I am assuming that it is stress – the same thing that’s made me put on weight and get depressed. But with my Mother’s diagnosis, as I say, I wonder.
I’m not concerned enough to get myself tested for the Alzheimer’s gene. I need to be doing all the same things to keep my brain sparking, regardless of whether I have the gene or not. I would hope no one would make a decision to be or not be with me based on my having the gene. So there’s really no point. Is there?
The thing that disturbs me the most about the possibility of developing Alzheimer’s is the pain it causes the people you love. I can’t imagine not being able to remember Kelsea. What would that feel like for her? We’ve actually talked about this, and I’ve told her that if it ever happens to me, to just remember that I’m in there somewhere, knowing and loving her until (and past) my last breath.
I’ve recently become fond of the TV show “Grey’s Anatomy”. One of the characters on the show is in a similar position, although her Mother’s Alzheimer’s was much more severe than my Mother’s was (and she’s fictional). But in a scene the other night, when she was searching her bag for the house keys that were in her hand, I was reminded of myself.
And I felt a light chill.
Kelsea came out of karate yesterday pale and in pain. Class hadn’t hurt her – she had been having terrible pain in her right flank, in short stabs, for over an hour. I quizzed her, took her home, tucked her in, took her temperature, forced fluids, gave her Tylenol, fed her mac and cheese. She rated the pain a 9 on a scale of 1-10, and asked me if this was what it was like to be in labor. Of course, I remember labor, but I can’t be in her body to tell what she’s feeling. Regardless, it was bad pain. I have come to realize that Kelsea has inherited my father’s legendary high-pain threshold, so when she says it hurts, you can believe it hurts like the devil.
It was still bad this morning – she couldn’t move without intense pain. And she’d had some nausea. Time to call the doctor! Dr. R. agreed with my preliminary diagnosis – it sounded like the dreaded kidney stone. Kidney stones in kids, while still rare, are dramatically on the rise. But that meant that our next stop was the hospital for an ultrasound. I’ve been in the hospital with Kelsea when I had her (contrary to the insurance company’s bizarre statement that I had her at home) and when she had her bad shoulder x-rayed. Pat’s been there with her when she had an MRI on the same shoulder, and when he accidentally let the shopping cart she was sitting in tip forward, resulting in a parking lot faceplant when she was a baby. (I’m glad I missed that one and glad she has such a hard head – figuratively and literally.)
But today, when the Hmong ultrasound tech, who mispronounced Kelsea’s name, and scolded me about her having had cereal three hours previously, told me to sit in the corner and watch, it was like an awful movie. What was playing through my mind was worse. Looking at the complete and total mystery of the ultrasound pictures – is all black bad? or is fuzzy bad? – my mind went everywhere: to her being really sick – like kidney cancer sick, to her being in even more pain, to her having to stay alone in the hospital, to any and all kinds of unknowns that are as bad as they can be. My thoughts spun out of control.
Despite Ms. Hmong’s protests, I got up and went to stand beside her, to hold her hand, and stroke her hair. Because that’s all I could do. That’s all any mother can do sometimes. It made us both feel better. Her beautiful blue eyes looked into my hazel ones and we spoke without words. We both felt that eternally powerful bond of love between us that made us smile. It was one of the deepest gazes I’ve ever shared with her. She lay on that table, in that darkened room, looking like a teenager, looking like a woman, looking like my little girl, and being just an amazing, strong human being.
The ultrasound was inconclusive. We’re waiting for blood work results. She’s still in pain, but now instead of me, she has her dad and her dogs and cats for comfort. I’m hoping that she’s not an early third-generation victim of the female kidney stone curse that runs through the women in my family. But if she is, we’ll deal with it.
As a Mom, you never want your child to hurt, to suffer. You’d do anything to spare your child pain. And it’s heartbreaking to feel helpless when you can’t fix their pain. When I can’t fix her pain.
Good news! (I think.) The dreaded lump has been pronounced a cyst! Guess I wasted a hell of a good worry, huh? Guess we all did. I still need my doctor to tell me what to do next, as E-Bro and Mr. GF both say that you just shouldn’t listen to the radiologist about anything other than the basic facts. My doctor had a death in the family and won’t be back until Monday, but at this point, I can wait.
The mammogram process was as pleasant as could be expected. There’s not much that’s fun about having your breast squeezed between two metal plates, especially when your orders are “Now, let me know when this is as tight as you can possibly stand it.” To be a wimp? Or to grit your teeth and bare (I mean bear) it? I chose the teeth-gritting stance, so they could get the best image possible.
The ultrasound was painless, and she let me see what she was seeing. She did mark me up with a Sharpie, but at least she didn’t draw a face or a mouse with whiskers or anything goofy. But her advice was not overly helpful. “What should I do now?” I asked. “Go through menopause and don’t take hormones,” she said. Gee. Thanks. I’ll get right on that.
The radiologist didn’t come to talk to me – just told the ultrasound tech what to tell me – and everyone kept saying that they’d looked at this before, which they hadn’t, which rather shook my confidence in them. Exactly who did they think they were looking at? But seeing the dark, vacant space on the ultrasound that represents fluid, not solid, was a certain relief.
So now, it goes away by itself, I suppose. I wait.
I wonder what I would have felt around me energetically if things hadn’t been okay? I was pretty sure things were okay, even though I was tearful and worried on Monday night, mostly because I couldn’t feel any clustering of comforting souls, and I am certain that I would have had I needed them.
Time to turn to, as the Captain would say, and focus on the next things…getting my back put back into place, since it went out on Sunday, finalizing the divorce thingamajiggys, and what to do with my work life for the next few years.
There’s hope in the air again.
I don’t like to whine. Truly I don’t. It gets you nowhere and actually makes you feel worse. I hope it seems more like I’ve been documenting my feelings around the divorce rather than whining about it. So my writings about my feelings about the lump are to be of a similar tone. As I say, I hope it doesn’t come across as whining. Let’s call it emotional journalism, shall we?
I gathered my cojones and called the surgeon yesterday. Of course, I got his appointment desk recording, and they said to allow them 24 hours to call back if I was requesting an appointment. We’re at 24 hours now and not a peep. Is it the approaching holiday that accounts for the delay? Or do they just not want me? Am I being rejected by the medical community? I understand that offices can be closed. But do THEY understand what it takes to reach out to a surgeon? I somehow don’t think they do.
It seems with medical “stuff”, you have to make your own arrangements for everything. Call for a mammogram So if I have a mammogram, when do I hear something? And from who? Does that mean I have to schedule something else with the mammogram people? Something else I have to wait for? Didn’t the doctor mention an ultrasound as she was leaving? Call the doctor to confirm. Call for an ultrasound appointment. What were those surgeons names she blithely mentioned as she walked out the door? Call to get the surgeons’ names. Call for a surgical consult – or something – wait, what am I asking the surgeon for? Here’s the name of an oncologist, just in case. When do I call them? And what for? And the name of a breast reconstruction surgeon. Huh? The other surgeon doesn’ t do that? When am I supposed to think about THAT?
And you know what? I’m doing all this and I’m scared. And there’s nothing anyone can do about that. This sort of thing just lingers in your mind. It’s hard to keep from feeling for the lump. Is it bigger? Is it gone?
I am chewing my fingers out of stress, so Denise just gave me a squeezy stress hot dog. That helps. Am I overreacting? I am tired, headachey, exhausted — is it stress? Or am I “sick”?
Pat has taken Kelsea for lunch at the hospital cafeteria – strange, I know, but it’s good, inexpensive vegetarian food. Is it a portent of things to come?
I’m so tired of thinking about this. Where’s the mind eraser when you need it?
Ah, yes. The icing on the cake – or perhaps it is better characterized as between the layers?
What better device to take my mind off the reality of my divorce and my impending unemployment than a lump in my breast? No, wait – I’ve got it — two lumps in my breast! One found by me, the other found by my doctor.
Let me preface the remainder of this post by saying it may be TMI for some, but perhaps it can be an educational experience for others. For me, it’s a journal.
Every breast is different, just as every woman is different. Now, I haven’t felt a lot of breasts in my time (with the exception of that group grope in the catering kitchen of Lionsgate after Mary got hers done). It’s not something we women really discuss. Men have, of course, felt more than I have, assuming they are lucky men, but they are not going around feeling breasts with the same focus as women such as myself.
I’ve got nice breasts, even now. Back in my teens and twenties, they were small and practical. Now they’re not small anymore – I would best describe them as “lush”. I’m really quite fond of them. From a breast tissue standpoint, they’ve always been lumpy, to use the technical term. I’ve never felt comfortable doing breast self-exams because of their lumpiness. I was never sure what I was feeling, and I was always a little queasy doing self-exams, probably because I was uncertain and afraid I would find something, because of my Mother. And so I, like millions of other women, just wouldn’t do self-exams, unless it happened to cross my mind when I was in just the right headspace. On the positive side, I have been religiously good about getting mammograms since my very early thirties, also because of my Mother.
So two months ago, when I was in the right headspace, I noticed a sort of thickening in my left breast. Since I’m naturally lumpy (that really doesn’t sound attractive, does it?) and it was just after my period, I didn’t think much about it. But three weeks ago, it came to my attention again, and it felt like there might be something unusual there. Then I promptly forgot about it. Until about ten days ago. And I really felt it. That was a Friday. I called my doctor on Monday. She saw me on Tuesday, and confirmed that not only did I have the lump I’d been feeling, but I had another one as well.
When she confirmed my suspicions, she told me we needed to schedule a mammogram and an ultrasound, and a biopsy. Biopsy? That’s the word that makes your hands tingle and your head suddenly feel all light and spinny. That’s the word that suggests that the dark things that have lived in the corners of my mind for years may be creeping out into the center of the room. Doctors seem to toss the word out there so casually – do they know how it makes their patient (oops, almost said victim) feel?
The CNP proceeded to ask me more about my Mother’s medical history with her countless cancers, and asked if I had considered genetic testing. My response was essentially, “Duh..uh..uh..i dunno?” She said she knew how I felt and that her own mother had died of breast cancer when she (the CNP, not her mother) was eight years old, and she didn’t want the testing and they hadn’t told her that her mother died of cancer until she was “in the ground.” You know, somehow, this story wasn’t making me feel any better.
On her way out the door, she tossed out the statement that I should talk to a surgeon (which generated a new round of feeling like a dog left on the side of a highway) and gave me a few names. My parting words to her were, “I think you may have to write those down for me later.” She laughed.
How surreal the whole thing was. Is.
That was Tuesday. I called for my mammogram and they can’t see me until December 1. Kelsea’s birthday. How special. I remember my Mother telling me on my 18th birthday, when she came in to kiss me goodnight, that she had cancer and was going in for surgery the next day. She kept waiting to find the right time to tell me, and it somehow never came. I remember lying in my bed that night, silently crying, tears flowing into my ears, thinking that THIS is what it’s like to be a grown-up. Great. I don’t want to tell Kelsea on her 13th birthday if my results are less than positive.
I told Kathy and Denise, told Pat, told Mr. GF, told Issy, told E-Bro, told my boss Ivan. That sounds like a lot of people to tell, now that I think about it. I told people to feel less alone, but it didn’t seem to really help. All last week, when I went to bed at night, I felt alone. Very alone. The hamsters that appear in the wee small hours have added a new team member – Cancer. A little fuzzy hamster in a black cloak with a scythe.
Everyone has been a great comfort – Denise and Issy have offered to take me to the mammo appointment, Ivan provided me with some referrals for a good surgeon and oncologist (that one set me spinning again). E-Bro and Bubba Sue are as supportive as they can be and make me feel loved. Mr. GF offered the security of his arms and dedication regardless of how many breasts I have.
I told Kelsea yesterday. I am not good at hiding things from her – she knew something was up. It was hard – not as hard as telling her about the divorce, but hard. We both shed a few tears and spent the rest of the day snuggling and laughing. She is certain everything will be all right. She offered to sleep with me, to keep me company. It was enough just having her in her own room down the hall.
80% of breast lumps turn out to be non-cancerous. There are many reasons that they appear, and they can disappear with no treatment at all. But when you find a lump, cancer is the first thing that comes to mind. If you watched your Mother die of cancer less than three years ago, after she’d lost one breast to it, and had a lumpectomy years before that, cancer is at the forefront of your thoughts. Perhaps it’s alarmist, but it simply can’t be helped. I have to ask myself, “Am I the 1 in 8 who will get breast cancer?” I am one of ten women in my department at work. Is it going to be one of us? Is it going to be me?
Is it already me?
Today’s guest poet – Author Unknown
What Cancer Cannot Do
Cancer is so limited…..
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.