The Blog: Spellbound by our own imperfect lives...

Regis put on our first and favorite Christmas CD this morning. Christmas on the Moors which we always refer to as Christmas on the Moops. I had coffee with Shannon and Gretchen at River Rock. I was running off at the mouth due to the alien baby related Percoset. They didn't seem to mind. I went to the Pulse and walked on the treadmill and talked to Rachel about my exercise plan. Good to get that back in my routine. I got a call from Judy. I will be in Arm 1 of the clinical trial, the one I was hoping to win. What the hell. If you can't win the Powerball why not win the chemo lottery. More drugs more often. What they call dose dense. We're good to go for the 11th. Jill is picking me up at noon for lunch. We always have a lot to talk about and we're going to a favorite spot...low lights, friendly service, good food, only two televisions. Ella is coming over tonight for our head gear style show. It will be a fine day.

I saw a couple of my doctors today and they examined my armpit alien baby and deemed it ready for delivery. I have never been so glad to have a doctor come at me with a couple big needles and a knife. They drained 100 ml out of that sucker in the first five minutes. The downside is that I'm back to dragging a drain around and I'm back to wearing the Ace bandage but it's still better than that alien baby. I also signed the informed consent for the chemotherapy clinical trial. I bet that sucker kept a team of lawyers busy for a good long time. I only had to sign my name one time, eleven times less than I had to sign it to get an acupuncture treatment yesterday. I'll get randomized tomorrow which is not nearly as interesting as it sounds. It means that they will put my number into the computer and I will be randomly assigned to Arm 1 or Arm 2 of the study. The arm determines the kind of drugs and the cycle, 14-day or 21-day. Chemotherapy starts Tuesday, December 1...

I had a dream last night that, in a six block run, involved an evil event, a houseful of guests for whom I had forgotten to prepare, uninvited guests in the attic, bowls full of wet cookies in the yard, a lost cellphone, and a lane on 169 full of drunk people with their lights off as I tried to navigate my way to the SPPD. This is about as much of a plot as my dreams get. Regis had a dream the other night that I was wearing a Smearth Hat. When he first told me the dream, I thought he said Smurf Hat so I had quite a different impression. The Smearth Hat had an elastic strap under my chin and an opening in the top. Bubbles would fly out of the opening to land on surfaces around the house where they issued sarcastic comments and insults like, "Oh look, Uncle Alfred...if he had another brain it would be lonely." Eventually the bubbles would cease their insults and burst. I was the only one wearing the Smearth Hat. Of course.

It was a long day, my friends, but much was accomplished. I am feeling much better this evening and hope that I am ready to go forward without holing up in the bedroom. At least for now. I woke up this morning with a monster ugly swelling under my arm, right where the incision was made. It looked like an alien baby about to emerge so I called the clinic and told them to prepare for delivery. Then I had Regis wrap me up real tight so I didn't have to feel it. On the way to the appointment, I told Emily the story. Alex says in this soft little voice from the back seat, "Nana, do you really have an alien baby at your house?" No alien baby was delivered. No needles were used. No need to use the Ace bandage anymore, sweet relief. It will dissipate on its own says the doctor. So, the upshot is that my treatments will probably start December 10th or thereabouts. I will be a part of the clinical study (no disadvantages and many advantages). I have a few appointments betwe...

I wrote the other day about feeling immobilized. I felt that way yesterday, too, in spite of having coffee with a lovely friend of mine. Her home is in the woods and I felt calm and peaceful going there to see her, but I came home and crawled back into bed. I stopped at the coop to buy something for dinner and came home with the weirdest assortment of things. I made a lot of trips around that store, too, picking up chicken breasts then putting them back, picking up ham slices then putting them back. I should have had a list. Mary sent a message later saying that after she had a game plan, she felt much more able to manage her disease. I think she's right about that. Friday, I expected to leave the clinic knowing something. When I only left with a fistful of more appointments, it was disappointing so I holed up for a few more days. I am optimistic that today will be better. We had planned that Regis would stay home today as there was no point in him sitting for 6 hours while I...

We are not unhappy or discontented. We are listless and languid. The back of my neck is sweaty and my hair is flat. I think I've had three naps today although the last two count as only one since I didn't get out of bed between them. I finally decided to get vertical so I walked out to the living room where Regis had just assumed the nap position. Sigh. It's only one o'clock and I've had three naps. I could take another one which I may disguise as reading. This has been my favorite meal this weekend. I call it the Thanksgiving Parfait. I put a spoonful of apple pie in the bottom of the glass, then dollops of potatoes, stuffing, yams, and green bean casserole. Top with cranberry sauce. No heating. Easy to eat while slumped over in a napping position. Toss glass and spoon into trash when finished. No dishes! I've been wrapped in a giant Ace bandage for four days. It makes me hot and cranky and is probably going to cause a yeast infection the size...

Yesterday, I had an appointment with an oncologist. An oncologist. Regis and I joked that we were going to see an oinkologist...a specialist for people who really like bacon. I don't think I had thought through, in my head, where I was going and why so this was a day of reckoning. We walked in and there are posters for cancer support groups, brochures about wigs and scarves, and chemo chairs. What the hell. I thought it odd that the nurse asked about my appetite. I ran into Bonnie, a woman I used to work with...who has cancer...and no hair. Baldness could be my future. The oncologist asked if I would be interested in being part of a clinical trial. It's a Level 3 trial where they decide based on patient outcomes, if this protocol should be the standard of care. He made it sound like a very exclusive club so I asked about the criteria to qualify. He said this and that, this and that but in my mind, you qualify by wearing ass kickin' boots to appointments, by photoshopp...

I love retirement because mornings are so peaceful. No rushing to get ready for work and planning the whole day before the sun even comes up. We sit in our chairs, dog at our feet, fireplace pumping out some heat, cups of coffee at hand. So much nicer to move gently into the day. One of the things I gave up in the medical madness of the last few weeks is Thanksgiving dinner. We're still having it here but it's much modified from the affairs of the past. Regis has planned the whole meal with a little help from the binder. Tom, I even allowed Reddi-Whip on the grocery list. I don't care about the damn Reddi-Whip anyway. What I like is lots of people and lots of good food. We'll have lots of help. Ella and Peter are coming Wednesday to help with cooking. Peter loves the cornbread and sausage dressing and said he would make it. Tiffany and Amber are coming early Thursday to help. We have paper plates and plastic forks. Side dishes will be cooked in aluminum throw-away c...

Regis and I went over to meet with the surgeon this afternoon. He said the margins, between tumor and healthy tissue, are fine and there is no need for more surgery. The tumor is negative for HER2 and postivie for both hormone receptors. That means basically, I have a lazy tumor. I would expect as much. He said the oncologist will likely recommend (he may have said "offer") chemotherapy as well as radiation but it sounds much more positive than the picture I was getting on Friday when the PA made it sound horrible. He said no, it does not look horrible. He likes the oncologist I'll be seeing, he gave me his email address, and said I should come in anytime there is something I need to know or don't understand. He also cautioned me about reading things on the internet, something I have discovered on my own. I still have the drain but that should come out Wednesday. Fireworks! Champagne! Celebrate!

It's Monday and today we'll go meet with a surgeon and maybe with an oncologist. Maybe today this will turn into one of Regis' dreams, with a plot and characters, instead of being like one of my dreams, an amorphous blob that scares the shit out of me for unknown reasons. I've gotten used to saying the word cancer although if I am caught off-guard, I say something else. Someone at the Pulse yesterday asked me if I was hurt because I was snoozing on the couch instead of exercising. No, I said, just lazy. If we had implemented my idea where people have a small virtual projection over their heads telling you the information you need to know, then my problem would be solved. I thought of this once at the Mayo Clinic. I like to think of it as curiosity and not nosiness but it could be nosiness. So, if people were curious...or nosy...they could read it in blue lights over my head. I have breast cancer. (It would probably also say I am a drama queen.) Ella came ove...

I was sitting at the table eating my lunch when I saw the pathology report. I had read through it with the PA on Friday but only about a tenth of it stuck with any meaning. Like a flock of little moths in the garden. Since it's three pages of mostly unintelligible medical lingo, I skimmed through it and tried to absorb some more of it today. The PA had highlighted a few things and written down a few notes but it only made sense in a general way. So, I started putting words into google. Words like metastatic.  Words like metastatic crawl around the outside of my head if doesn't pertain to me. If it becomes personal, all of a sudden it's like a darning needle in my brain. Right in the ear. Then I started looking up survival rates. Oh, holy shit. This is a concept of which I would rather not be aware. I'm not reading anymore...at least until I see Dr. Deaconson and the med onc. That's what they call the oncologist...a med onc. I'm learning a whole new l...

Regis and I met with the PA at my surgeon's office yesterday. I was irritated that they hadn't returned my phone call about the pathology results. Once she started talking, I could see why they hadn't. Poor Jan who talked to us must have drawn the short straw. There are three pages of medical lingo which the oncologist will explain but which means possibly more surgery, most likely chemotherapy, and for sure radiation. They were not cells that escaped during the biopsy. They were cells that had deliberately gone there and set up camp. Angry cells, bent on destruction. About to send more troops out to distant locations. Scouts with orders to set up more camps. I could say something about catching them before that happened, but I have learned this about optimism: It only goes so far. It was a stunning conversation. When the medical professional gets tears in her eyes and grips your hands, you know you're in for it even if you don't know what IT is ye...

WTF. The plan was for the doctor to call me BY Thursday with the results of the pathology tests.  BY Thursday, not sometime after Thursday. I started carrying my phone everywhere I went at 7 am yesterday because you know, the minute you take a bath, the phone will ring. I carried that damn phone, in my hand, everywhere. I took a nap with the phone on my pillow and I ate my lunch with the phone right next to my plate. At 2 pm, I called and talked to a nurse and asked her to remind my doctor's nurse and the PA that I am waiting for a call. Nothing.  And you know how your mind goes right to the worst case scenario? You start thinking the cancer has spread everywhere, you have two weeks to live, and they're going to amputate both legs in the meantime. Dramatic over-reaction? Maybe. Whiny and self-involved? No doubt. I have great respect and affection for my surgeon. He is on vacation in California so I know I am not first on his list of priorities as he is most likel...

I know it's probably an anesthesia hangover and the effects of Percoset but I love the way I sleep now. It's like falling into clouds and there's nothing I can do to stop it. I have fallen asleep in the middle of conversations. I have dropped my book to my lap and fallen asleep with my glasses on. I sleep so hard that it takes me a while to wake and I am always confused about where I am. The end of the nap is a little disturbing but the rest is bliss. Since I lurch from one nap to another, it's hard to remember what day it is. This will end. Tomorrow, I go in to see the PA who will remove the drain. Have I written this before? I'll be glad to get that thing out of there. Alien embryos and all. I read over my last few posts. I notice I repeated myself several times. I don't know if it was unintentional or if I thought I was using a sophisticated literary device. Regis is off to therapy and I'm going to take a shower. I requested a trip to River Rock f...

I don't really know what kind of drugs I was on during surgery. I know they gave me Versed right before I was wheeled down the hall. Just a little something to take the edge off, I guess. It also does a good job of erasing the memories. I recall seeing the OR but then the lights go out. The next few days have been like this Van Gogh painting...lots of starry naps and dim memories. I've been taking Percoset since I came home. It does a good job on the pain but today it created some nausea. It also makes me fall asleep in the middle of conversations which some people find disconcerting. I skipped my 2 o'clock dose but decided about 6 that a little nausea is worth the pain control. I am not a hero when it comes to pain. I don't even like a hint of pain. This is an interesting part of my post-surgical experience. It's a suction drainage thing. The tube end disappears into my skin under my arm and is fastened there with a couple of Frankenstein stitches.I...

Day two. I had a good night's sleep, waking only one time to take the Percoset and read for a while. Then back to sleep. Percoset is a good drug for pain relief but it has a few side effects. It makes my brain fuzzy for about 3 of the  4 hours. By the last hour, the pain is creeping back in but my brain feels better. Funny how my brain will distract me from the cancer shadows by thinking about my fashion look when admitted. By thinking about the Thanksgiving menu and especially the dessert. By thinking about how Percoset makes me itchy and hot. By wanting to review every detail from the last few days. Poor Regis is probably getting tired of telling the same stories because I either can't remember or I can't remember all the details and how it fits with something that came after. Something that came after. I'm sitting in the office. It's dark and chilly outside and it's dark and chilly inside. I'm drinking coffee and thinking about to think about the re...

I slept most of the last 24 hours. Good thing about the good drugs...they reduce pain and help with sleep. Bad thing about the good drugs...they mess with your memory. I introduced Tiffany and Peter to Eleanor three times. I feel rested and ready to go home. There are some things to learn before they give me the boot, like the drainage business. The food here has been fine. I ordered scrambled eggs for breakfast. There is a seemingly endless supply of coffee. Not great coffee but drinkable. I have had worse. Everybody who comes through the door wants to know what else they can do for me. I suggested a cheese plate and a glass of wine but I couldn't get anyone to go for that. Harrumph. What kind of hospital is this anyway? I haven't looked at the actual surgery site yet. The nurses peek from time to time and maybe I will look next time. Round #1 is almost over. The pathology report will be back by Thursday and that will determine the course of action. I am resigned to ...

I just spoke with Teresa's doctor. The surgery was more extensive than originally anticipated because of the positive results in the first node. They ended up taking 8 more nodes, I believe, which means there was more tissue disturbed under her arm and thus a longer recovery. The best case scenario is that in doing the original biopsy a cancer cell was dislodged and ended up in node #1, the natural filter. If this is the case it will be considered a false positive. They took the additional nodes because they can't take the chance that this was the case. Now comes more waiting. Teresa won't know more until perhaps Thursday morning when the pathology comes back from the lab. When we know the tumor size, the hormone receptor types etc an Oncologist will make the determination as to further treatment. It will be radiation at a bare minimum perhaps followed up with chemo. Keep your fingers crossed. Regis Sent From My iPad

Teresa has been in surgery for about 90 minutes now. The surgical nurse just called out to the waiting room to tell me that one of the 4 sentinel nodes that they removed came back from pathology as being positive. So there is more work to do and she will be at least another hour. Keep her in you thoughts. Sent From My iPad

My hospital look is important to me. Regis rolls his eyes but I tell him you can't walk in there looking all downtrodden and mopey and shit. You have to look like you could be walking into a party. He suggested wearing bedroom slippers when I was at the part where I had to decide footwear. My turn for the eye-roll. I wear slippers to the Pulse some mornings but I do not wear them out of the house to other places. I suppose that would be acceptable...they're like moccasins...just not chic. Like pajama pants. I have seen people actually wear those in the grocery store. Please. It doesn't take that much effort to put clothes on, people. I've decided to wear my ass kickin' boots as a statement. I am sorry if someone has to tote them through the hospital because they are a handful but it's important to me. In the HyVee gift shop (which I love) yesterday, I bought a long, asymmetrical hooded vest with big pockets. It's very hipster. The only problem is that I ...

I think someone has been after me with the metaphysical whisk of life. Yesterday, I was busy all day but didn't seem to get much done but make a bigger mess. Today will be better. I have a long list of tasks for this weekend and the first job will be to write them down so I remember what they all are. My sweet friend, Amber, gave me a bottle of Big Ass Cab for my birthday. Over the last few days, it has disappeared. What a nice red wine for a November evening. Cabernet, pumpkin candles, and my honey across the table from me. I am a lucky woman. You can tell I have been brain scrambled as I didn't even post any Halloween photos. The party at Tom and Betty's was a blast, as parties at their home always are. Elliot and Alex are waiting to get trick or treating. Ella is probably playing with the puppies. Great ideas bringing puppies to a party with small children and adults who are imbibing. Ha! Jan is onto something. Could be like a Tupperware party only...

Regis will be posting here for me on Monday until I am able. For updates, because neither of us will be able to remember who likes email, who likes texts, and who is on Facebook, and who likes phone calls...so this is the universal landing pad for information. I still don't have a surgery time but they should be calling soon with that. You can sign up for email updates on this site. Check the sidebar to the right...past all the poems and pictures of me in wigs. Thank you to everyone who has written called, posted encouraging words on Facebook, and sent big checks. Haha! Just kidding about that last one. I appreciate every funny, profane, and sympathetic message I have gotten from my friends and family. You all rock.

The first few days after the diagnosis of breast cancer, I was angry and terrified and sad. I went from thinking about dying to thinking about my first and worst fear, puking. We all see things differently and hey, throwing up is not my thing. After talking to my doctor yesterday, I was almost giddy. He is so calm and reassuring and conveyed the sense that he was going to help me through this. It was liberating. I don't have to deal with alone! Here was this strong, handsome, professional man who is going to cut me up and put me back together. I felt great! Today, I feel like I have been unleashed, let out of the cage. I have plans and lists to make. I'm not going to sit around all weepy and shit. I read the most inspiring blog this morning, sent to me by a long-distance friend, Di Keller. I said I was ready to talk about "support" but this blog is amazing. Back to the support thing for a minute. I wasn't ready for support, or to talk to most people, becau...

I had an appointment with Dr. Deaconson this morning. He's a saint and he rocks. He is so calm and reassuring and even though he was going to be on vacation next week, he is coming in Monday to do my surgery. He said his gestalt is that this is early and the outlook is good. He will do a lumpectomy with some exploration of the lymph nodes to see if it has traveled. I will have radiation because that will help ensure that cancer cells have not strayed from the one site and stirred up an unwanted ruckus. I''ll be in the hospital overnight if all goes well. All the pre-op stuff is done.Chest x-ray, blood work, EKG, medical history. I don't know why I always feel compelled to confess to smoking for one day when I was in college. The PA said the statute of limitations has run out on that sin and I can erase it from my card. I feel so much better except that I have a headache and I'm tired. I think I'm going out to sit in the sun. “Tell me what it is you plan t...

I'm feeling much stronger and more peaceful this morning. I slept well, took Gus outside at 4:30 and I think the sun is going to shine today. All good signs! Regis and I went out for dinner last night, seeking comfort food. He had a pot roast commercial and I had ribs. The pile of ribs was like a meat tornado. We'll be eating those for the next three days. We came home early, watched some Arrested Development, and went to bed. No election returns for us. I was almost too nervous about the outcome to attend to it. I avoided the articles in the paper and I refused to think about the possibilities. Regis woke me in the middle of the night to tell me Obama had been re-elected so we don't have to move to Poland. Ha! I'm on my way to River Rock to work which means I take photos, gab with people, and enjoy a latte while I stroll around. A good job, eh?

I was awake from 3 am to 6 am. I slept from 6 am to 8 am. Regis woke me up with the promise of coffee. I'm sitting here staring out the window. Then I slept again from 10-12. I woke up at noon, thinking it must be later than that. I don't believe it's good to sleep in little patches like this. I talked to Jackie, a friend in Wyoming. She had a double mastectomy 13 years ago and is here to tell the story. I can't talk about it to everyone but I could talk to her. I knew this would happen because it's my way. I am writing my way through this. Thoughts I cannot articulate in spoken words can be written. Here's how you know that life goes on....bad shit keeps happening but we continue to celebrate that we are alive and for the most part, happy. This is my journey but other people are traveling their own paths at the same time. My brother Bruce attended the funeral for his little grandbaby, Piper, today. She died of SIDS last week. This is more manageable than ...

I'm on my way to bed....again. I don't know how to deal with this. Who do I tell and what do I tell them? I don't want to be dramatic and scared and freaky but that's where I keep going. Scared, creeped out, dramatic. Freaky. I imagine these feelings morph over the next few days. What do I do until the meeting with the surgeon? How do I keep moving?

I can hear rain against the window. I am going to bed again.

It's 3:45 in the morning. I am awake. I had a mammogram on October 15th and then an ultrasound on October 26th. Then a biopsy on November 1st. Today a nurse called to tell me I have invasive ductal carcinoma. There's something that will fuck up your day. Carcinoma. What the fuck. I wrote a few notes, looked up from my notepad, asked Regis to take me to Patrick's to start the wine therapy. As we talked, I said I would write my way through this and I will. It's 3:30 am and here I sit, glass of wine at my side, numb from the wine and numb from the news. There is no history of breast cancer in my family. I thought I was immune. I have regular mammograms. I thought I was immune. I read this several times. What the fuck. Mastectomy? Radiation? Chemotherapy? This is my 60th year? I wanted to stop saying shit so much in my blog posts and instead I have progressed to saying fuck. Multiple times. I am going to wallow in misery for a few days then I will buck ...

One night, several years ago, I woke up in the middle of the night with a terrible pain between my shoulder blades. I got out of bed to check my symptoms on the internet, as any modern woman would do, and found that pain between the shoulder blades, and an impending sense of doom, are common symptoms of heart attack in females. Whoa. I didn't have an impending sense of doom until I read that. I had Regis get out of bed and take me to the ER. Turns out I had a bad case of heart burn. I get that impending sense of doom sometimes and I don't know if it's a true feeling about the future or just a hidden anxiety poking its head out of the closet. Dusting itself off, turning on its faint light, and stalking me in the predawn hours. When I have insomnia, I'm never sure if I am awake because I'm anxious or if I'm anxious because I'm awake. Usually the latter. What else are you going to do at 2 am except watch the gray-faced men march around the bed? Regis has ha...

I can't figure out how the time change saves anything. I can't even figure out if it just ended or started. Seems like we should find a way to save some daylight in the winter but if there are only 8 hours available, I don't think it matters what you do with the clock. Some people think they get an extra hour of sleep but for me, it only means that I wake up at 3 am instead of 4 am. I woke up early yesterday, was tired early so I went to bed, and woke up at 9:30 thinking it must be morning. What the hell. I'm not a fan of the short days of November and December. I only survive with strings of party lights, lots of candles, and extra Vitamin D. I'm trying to get outside a little bit each day to absorb what little light there is. I'd like to get Gus to wear a string of lights like this dog, but I'm not hopeful that will work. Regis and I went to Pappageorge for dinner last night. He had the London broil and I had scallops. Both were quite delicious. W...

I was raking leaves...then came in to read an email from our friend, Bob, about his wife Marilyn who just had heart surgery on Wednesday. They are both doing well and that is wonderful news in a week of mostly bad news! The two things, raking and Bob's email, reminded me to be grateful...and that reminded me of this poem. I have it posted on the sidebar but I'm going to paste it here again. If you're reading this, find someone to read this poem aloud to. Or go to your favorite coffee shop and read it aloud to yourself. Maybe somebody will be listening. Gratitude by Barbara Crooker  This week, the news of the world is bleak, another war grinding on, and all these friends down with cancer, or worse, a little something long term that they won’t die of for twenty or thirty miserable years— And here I live in a house of weathered brick, where a man with silver hair still thinks I’m beautiful. How many times have I forgotten to give thanks? The late day sun...

I always think about how much to share here. I wouldn't want to read a long litany of woes on a blog but sometimes things happen that take over my thinking and it's not possible to go on unless I write them down. It's been a long season of bad shit, some way worse than others. I think one thing is bad, then another comes along to change my definition of bad shit. Thursday, my niece Cybil and her family lost their sweet, two-month old baby to SIDS. It's been an awful trauma for my family. This morning, I ordered flowers for a baby's funeral. Something seemed wrong about that. I had a breast biopsy on Friday. There was a major CF with the imaging clinic again and when I got to my appointment he said he couldn't do the biopsy because they hadn't sent the mammogram and the ultrasound. Good grief. He could tell I was about at the end of my rope, so he called and made some special arrangements so I could get it done that day. Bless his heart. Just when you g...