Email 1
9/15/2014 Monday Friday I had a chest x-ray as part of some rheumatology tests concerning what had been semi-diagnosed as polymyalgia rheumatica. There was a problem, and today I had a ct scan. It came back bad. There is an 8 cm mass in the upper lobe of my right lung that Mark Eggena was trying to not call definitely cancer, but that can't really be much else. 8 cm is pretty close to 3.15 inches - nearly Pi, another endless number as far as my calculator cares to calculate. Larger than a baseball, and no symptoms. I wonder how dense it is, what it weighs. And how quickly it's expanding. Are these things geometric or arithmatic? Much larger than expected. No symptoms, no reason why it should be so large, so sudden. A surprise, that's for sure. I'm 68, with a family history of colon and prostate cancer and non-Hodgkins lymphoma and a 45+ year smoker, so I've been waiting since about 60 for something to show up. And now I'm in the system. EKG this afternoon, PET scan Thursday, pulmonary function some time this week. The three qualifiers before seeing someone at Maine Medical Center Cancer Institute in wherever - Portland, Scarborough. I'll have a Thoracic Navigator to coordinate my team. I'm to have a team, it seems. I'll make notes. So notes - why? for who? Not for Dora, surely. She's beginning to understand what the possibilities are, of not having anyone who's family anymore. Frightening, really. Not for any posterity - neither of us has any. Must be to help me think, to use some nervous energy, something interior. Who do I tell this exists? Maybe no one. But if it's an interior monologue, why so specific? Must be for someone. Maybe the specificity helps it get thru my skull. I haven't gotten used to it yet, or thought too far into the future, except to wonder if the plans we’ve made - Key West, even Swarthmore next month, are reasonable any longer. It'll be two weeks or so before we know anything for certain, assuming we might know anything for certain again anyway. Prognosis — the likely course of something, but written in pencil. As Mark said, they could open me up and discover a whole new circumstance. I can't remember ever seeing Dora cry. I just couldn't stop walking around the parking lot while waiting for her to pick me up. Some things to think about. My to do list now includes making cemetery arrangements. shit.
Email 2
Subject: update Date: September 28, 2014 at 11:40 AM To Tumor Interest Group This is going to a small group of friends on a moment to moment basis, so you just have to deal with the fact that things change rather abruptly, and then, I’m afraid, will remain stagnant longer than we wish. It seems that the Central Maine Med radiologist who read my PET scan in Lewiston missed a couple of things and used the wrong name for others, according to the radiologist at the Cancer Institute. Unfortunate, but it did give us a week of feeling better. Current situation: There’s something glowing on or near my diaphragm, and another on or near my sternum, neither of which was noticed. I have another type of biopsy Tuesday - tube down the esophagus with camera, ultrasound and knife/grabber. How it gets to the tissue on the other side of the stomach wall isn’t clear to me. If the thingy at the diaphragm is the lung cancer, then I’m in Stage IV. That’s the oncologist’s bet. If it isn’t, then it might be something else of interest, or not. Either way, they’ll do a needle biopsy thru the chest wall to the node at the sternum. If that’s the lung cancer, then I’m stage III. If neither item is the same tumor genetically, then who knows? Monday, the 6th, I’m seeing my brother and sister-in-law in Bar Harbor. Since I’m going to start chemo most likely the next day, I’ll tell them in person, which I’m not looking forward to. jan
Email 3
Subject: yesterday, today, tomorrow Date: October 2, 2014 at 5:19 PM Tumor Interest Group. So, I’ve decided to find a format for these notes. Assuming I remember, they will all get grouped like this one. Day 21 (since initial phone call about chest x-ray) Ponderables: • Time is elastic, but it all must even out. The long days of childhood summer snap back without notice sometime later. • The red of really richly oxygenated blood is strikingly different from what we are used to seeing from paper cuts. It is a red that speaks of mortality in no uncertain terms, while being sublimely beautiful. Tumor Tales Tuesday I had an endoscopy with ultra sound to look/sample the tumor on the lymph node behind the diaphragm, which is in the abdominal, not thoracic cavity, and hence, troublesome. More sedation, more holes in my arms, more wrist tags (I feel like a Phish groupie). End result - cancer. So I am in Stage IV, when there isn’t any useful Stage V. Came home, had a small headache, and (drum roll of stupidity please) took two aspirin. Wednesday broke cool and bloody. I started coughing up blood from my lung about 8:00 while doing the dishes. It stopped after a half hour and maybe 2-3 tablespoons. The discharge papers from Maine Med in Portland for the endoscopy said I might cough some up, and I should call if greater than 2-3 tbs. So I didn’t, I went on to my 9:00 haircut. Started bleeding there, too, which made for a quick haircut. Got my attention, so I called my primary doc, went to see her at 11, had a bleeding episode in the office, which finally quit as she was walking me down to the ER. ER at noon, not busy but they don’t know what to do with me. Had another CT scan which showed some tumor growth. The ER Doc, who I didn’t particularly like and the hospitalist, whose personality reminded me of the crazed red-headed lawyer with a side role on The Good Wife) described how I might not make it thru the night, especially at Pen Bay, since they don’t have a 24/7 operatory , so I would get as much as they could before being put on a helicopter for Portland, where they could handle it, maybe, assuming I survived the flight. They simply wanted me out of there. Long pointed questions about could they put in a tube to suck out the blood and keep me from drowning while simultaneously keeping me full via transfusions, and would I allow that? Did I consider CPR and de-fibulators as extraordinary life support measures in line with my DNR request? I began wondering if I would ever see home again. Tears. Feeling it real. No longer theoretical in the (near but not close) future. And then Maine Med didn’t have a bed anyway. So, at midnight (yes, 12 hrs in ER) I moved to the ICU to be monitored through the night. Just to see if I was going to make it through to discharge time in the morning so I could go see the radiation oncologist in Bath that my Doc at the Cancer Institute got me into in a hurry. And - this morning I was alive, so I went home for breakfast, down to Bath, and had my first tattoos. There are actually 3, 1 pixel each, spread around and identical. They allow the x-ray machine to be quickly positioned. In dye transfer talk, it’s simply pin registration, using a tattoo gun. So the bleeding is coming from the tumor, and while there are several possible reasons, a big contributor turns out to be those aspirin. Tomorrow, we meet the other oncologist and discuss the slow diffusion into my veins of serious poisons. jan
Email 4
Date: October 3, 2014 at 9:55 PM Tumor Interest Group Day 22 Ponderables: • I’m not allowed to cry because it might make me cough. If I start, and the tumor bleeds, I would probably die before I could get to a hospital where they might be able to stop it. Tumor Tales: Friday - First radiation in Bath. five minutes since my new tattoos let the techs find the position quickly. The x-ray is silent above me, swings beneath me, is silent still. I’m laying with my shirt open, hands behind my head grasping two wooden handles, feet tied together with a large rubber band (like for a lobster claw, only larger) to keep me from crossing my legs and ruining the exposure. Late into the night, I was wondering if the physicist who determines the exposures had to take into account any lensing effect of the table I lay on. My optical training, my photography background, my too-busy late brain). So I talked to him this morning and found out that it is carbon fiber and built into the equations, but the energy level is so high there’s no practical distortion effect anyway. Next, an hour and a half with a new oncologist in Brunswick, where I will start chemo Wednesday. Lots of partly heard drug names, but it’s I think, going to be a two drug cocktail, one of which is partly platinum. Image machines and photographic chemicals still a part of my life, but now I’m the substrate. Going into downtown for lunch (Big Top Delicatessen) we get caught in traffic and I’m on a railroad track when the red crossing lights begin to flash and clang. Wonderful metaphor, great scene, but no train. Stop at the farmer’s market, which is just closing, looking for basil, but its all been killed by frost. Standing alone, off to the side, is a man in a suit and tie next to a portable stand offering an explanation for what the bible really says. He has no takers, it’s too nice a day. The weekend off. Then Monday: Radiation in the early morning, a long ride to a green cemetery in a quiet neighborhood in Orrington to pick out where my natural-material-non-metallic shrouded body will decay, likely in black and white. Then over to Bar Harbor to meet the cruise ship with my brother and sister-in-law and an older cousin I haven’t seen since I was about seven and his wife who I’ve never met. They are cruising from Montreal to NYC to see the colors. A nice lunch, and then tell them I’m dying. jan
Email 5
Date: October 5, 2014 at 9:13 PM Tumor Interest Group Sunday Brunch Weekend musings, no ponderables I’m beginning to realize that I’ve joined a sort of club, and that there are accouterments for members. The start of a special shelf in the bathroom for new meds, for example. So far, and I’m not even in the chemo world yet, I have: • Folic Acid, a B-vitamin, supposed to keep me from getting certain types of anemia, • Prochlorperazine, an anti-nausea drug - definitely not to be used on those with dementia, • Morphine Sulfate (with fake needle for squirting in the mouth), for cough suppression as well as pain. • 100% aloe, in case the radiation causes soreness or burns - 2-3 times a day • some other petroleum jelly-like gel for night use - stays greasy longer, making the sheets (or PJ top) especially enticing • single-use wet towelettes for removing the adhesive that hospitals like to use for bandages after taking blood from hairy arms. There are also pamphlets and booklets. So far: • What You Need to Know About Lung Cancer, • Oncology Nutrition Services at MMCCI (Maine Medical Center Cancer Institute) • Patient Information: Radiation Therapy to the Chest, • Oncology Social Work Services, • Understanding Radiation Therapy, • Protein Sources for Oncology Patients, • Radiation Therapy: Understanding Fatigue. Wednesday I start chemo, so I expect a whole new handful of reading material. Among other things, I will be taught how to pronounce chemo (Kee'-mo-ther'-a-pee), how to remain cheerful, and where to find support in the Portland area. Also I’ve been musing on the ever-present role of photography in all its forms in my life, now for more than 50 years. And in all that time have I ever been interested in self-portraiture? Of course not. And lately that’s all there seems to be. And in B&W yet. And my new tattoos. Three points are the perfect number to define a plane, said Euclid, but this plane wraps around my chest. It matches the bent beams from the X-Ray’s modeling light. Just as in any studio, the modeling light precedes the exposure. jan
Email 6
Date: October 8, 2014 at 10:18 PM Tumor Interest Group Day 27 Ponderables: • What does it feel like to stand on your grave? • How many pills are too goddamn many pills? • Even heading to radiation at 7:30 on a Fall morning, with sea smoke rising over the estuaries, fresh sunlight glancing off the grasses, leaves turning, and some jerk leading a line of cars at 10 under the speed limit, Rte 1 can be lovely. So. It’s Wednesday evening, the 27th day since I was told my chest x-ray had an anomaly. Not quite 4 weeks and I have accumulated (and continue building upon), like some driven collector of those dark walnut cases of sadly pinned butterflies crossed with the miscellany of strangers’ to-do lists. I understand the peculiar, out of-body affection and appreciate the usefulness, however actually confusing, but find the small piles (both real and mental) becoming dangerously unbalanced. My Apple Calendar now has a green section called Medical, and it is busier than the other three (General, Town Business, and Entertainment) put together. I have now, suddenly, completely unwanted, and unexpectedly: • a radiation oncologist, • two medical oncologists, • a thoracic surgeon, • a thoracic nurse navigator, • an oncologist’s nurse, • a oncological nurse practitioner, • an oncological social worker • a second opinion oncologist in another state whom I have yet to meet, • a financial advocate, • my pharmacist’s home number. additionally, I have • CDs with two CTs, one PET, and one MRI, • a 4 hour IV infusion of, successively • a liter of saline, • a half liter of anti-nausea medicine, • a half liter of something that makes me pee about every 7 minutes during the IV (unplug the dosage counter, wheel the IV bags & stand over to the restroom [20 feet], wash my hands because I am about to wreck havoc on my immune system and the i’m-not-feeling-well warning system, return to my lounge chair, plug in, sit down, find my page) • an injection into the IV tubing of a steroid • about half a liter of Cisplatin (chemo #1) • about a quarter liter of Pemetrexed (chemo #2) • a Vitamin B-12 shot (1 every 9 weeks) • dexamethasone, 2 pills twice a day, each of the three days following Chemo • a ban on alcohol for the day before, during, and after chemo, • folic acid (one of the B vitamins), every day • two prescription anti-nausea drugs, one of which is mainly an anti-psychotic which may NOT be used on adults showing signs of dementia) for use as needed, if needed, assuming I am not demented. Apparently my decision, • morphine. • stool softener, twice a day because the street dealers don’t tell you, but morphine (and other opiates) cause constipation • aloe, 100% - for radiation burns that I didn’t get • another, greasier skin treatment, ditto the reason above but • no partridge, and • no pear tree (but a recommend for pear juice if and when my gums swell. Enough counting, however. Monday, between radiation and seeing/telling my brother & sister-in-law that I’m ill, Dora and I went to the green cemetery to pick a place I liked, relieving Dora of that burden. Might seem grim and overly fatalistic to you, but for us it was on the way to Bar Harbor and a lovely day for a ride in the countryside. Having never done it before, obviously, and never spoken to anyone about doing it, I was pleased at my mind’s reaction to standing almost knee deep in unmanicured grasses in the late morning sun, learning which ways were east and west, seeing my relation to a small house and a tree many yards away, thinking about the sun and the snow. I put a 30” rod with orange tape in the ground like a surveyor, gaining the right to a 10’ diameter circle. I felt quite centered and relieved jan AutoCorrect: Making nonsense out of innocent typos
Email 7
Subject: You get two sides with that, part 1 Date: October 17, 2014 at 5:43 PM Tumor Interest Group Day 36 Side Effect (Merriam-Webster online dictionary) noun 1. an often harmful and unwanted effect of a drug or chemical along with the desired effect So, to catch up: An interesting week or so. In among the other stuff coursing through my body 10/6 were the two chemotherapy drugs. Cisplatin works by damaging the RNA or DNA of rapidly dividing cells that have lost the natural mechanism to stop dividing. Cisplatin is what’s termed an alkylating agent. Other alkylating agents you may be familiar with include mustard gas derivatives, famous since WW I, still popular as recently as Iraq. Pemetrexed is classified as an antimetabolite. When absorbed into the metabolic process, they prevent the cells from dividing. The essential problem is that rapidly developing cells include non-cancerous stuff, like red, white and platelet blood cells, hair follicles, as well as mouth, stomach and bowel cells. Which brings me back to side effects, definition 1. Since we are all now responsible for our own care, Big Pharma is kind enough to provide potentially terrifying information along with your treatments. For chemo, side effects are a big part of the information. Of course, everything starts with the caveat "Not everyone experiences all the side effects”. But I’m average: I just lump them together in my brain and hide under the covers, waiting for them to come out from under the bed as soon as it gets dark. • low white cell count - risk for infection • low red cell count - risk of anemia • low platelet count - risk of bleeding • fatigue • nausea, vomiting • constipation • poor appetite • shortness of breath • chest pain • increase in blood test creatinine (what?) • fever • flu-like symptoms • mouth sores • numbness or tingling of hands or feet • depression (I guess so!) • rash, skin irritation (mustard gas, remember?) • kidney toxicity • blood test abnormalities - low magnesium, low calcium, low potassium (sounds like fertilizer would help) • high frequency hearing loss, ringing in the ears • taste changes, metallic taste • hair loss • liver function problems And, of course, the one that I’m most worried about: • loss of ability to conceive a child - "please discuss this with your health provider". And, please contact your health care provider for any of the following: • fever of 100.4 F (just like Ebola) • vomiting more than 4-5 times in 24 hrs • no urine output in 24 hrs • unusual bleeding or bruising (what would usual bleeding and bruising include?) • black or tarry stools (why do I have to inspect this?) • extreme fatigue - unable to carry on self-care activities • swelling, redness and pain in one leg or arm but not the other • yellowing of the skin or eyes. So, ready for everything, I report for chemo training Tuesday the 6th at 8:00 am, and move into the comfy, reclining chair at about 9. And the drip starts shortly thereafter. Out around 2 pm, home, feeling fine, waiting for the shit to hit the fan. What’s to be first? Vomiting? Numb toes? Yellow eyes? Fatigue? (Merriam Webster), 1. the state of being very tired: extreme weariness. 2. the tendency of a material, such as metal,to break after being bent or moved many times) Hiccups, actually. Started Wednesday evening. So rare they are not in the patient’s literature. No more painful than anybody else’s hiccups, but most people aren’t afraid of tossing blood up with them. Can’t sleep. Coming every few seconds. In a basket full of drugs, nothing is labeled for hiccups. Be stubborn, it’s only hiccups, what kind of pantywaist are you anyway? But there is this small white container of morphine sulfate. Morphine, C17H19NO3. Named for Morpheus, the Greek & Roman god of dreams, son of Hypnos, god of sleep. Used and loved since 1828. The principal alkaloid of the opium poppy, known to the Sumerians in 3400 BCE as ‘Hul Gil’ the joy plant, and to Sir William Osler as ‘God’s Own Medicine’. What the hell. Open the container, push in the dispenser opening, fill the syringe to .5 (suggested dosage .5 - 1 ml, at least 45 minutes between doses), shoot into the mouth. Bitter, but isn’t medicine supposed to be bitter? Interesting to note that the syringe could hold 5 times that amount. Probably meant for more than hiccups. Hiccups gone. God of sleep arrives. 90 minutes later, god gone, hiccups back. Increase dosage to .7 ml, repeat from start. This happens a few times. Thursday evening life repeats. Call the oncologist on duty. He writes a prescription for metoclopramide, but it’s long past closing time. Friday get to try the stuff. Not very effective. Over the weekend Dora ends up calling the hot line about the hiccups. Please do not speak to me of Tiger Moms, no need. More later on that. This time it’s my own doctor, David Benton and he writes a script for lorazipram. Get it the next day, along with a warning from the pharmacy tech that the metoclopramide sometimes has a nasty side effect called tardive dyskinesia when combined with one of the nausea meds prochlorperazine(which I haven’t needed yet). Symptoms include uncontrolled movements especially of the face, mouth, tongue, arms or legs. Often permanent, no known treatment. Terrific. Put a big black 'X' on the nausea med and shunt it aside. Use the other meds if necessary. Benton also thought about Thorazine for the hiccups, but knew that the pharmacy would have to get it first. Thorazine works on hiccups, probably the same way a baseball bat would. It’s main uses are as an antipsychotic, anti-manic phase and in severe behavioral disorders in children and other insane types. To quote drugs.com, “The exact way thorazine works is not known.” But it is indeed listed for hiccups. I decided to pass. And mouth sores. Like you spent the night chewing your cheeks. And burping. But no drama so far. That happens later. jan
Email 8
10/17/2014 pt 2 Subject: You get two sides with that, side 2 Date: October 17, 2014 at 10:36 PM Tumor Interest Group Day 36, part 2 Side Effect (Merriam-Webster online dictionary) noun 2. a result of an action that is not expected or intended And the unexpected side effect wasn’t in the literature, wasn’t part of chemo-teaching, snuck up quietly and made sense as it surprised me, hurt me, buffeted me about, and straightened out some loose strands of thought that have been spinning webs in my basement for years. Merriam-Webster: Family: There are 15 definitions for Family, starting with “A group of individuals living under one roof and usually under one head”, and ending with “A unit of a crime syndicate (as the Mafia) operating within a geographical area." Leo Tolstoy starts Anna Karenina “All happy families are alike; each unhappy family is unhappy in its own way." Clear enough, I think. We all know a family when we see it, criminal or not. Still, it took another 800 pages for him to explain it. And me? Well, remember that I was meeting my brother, sister-in-law, and a couple of long unseen cousins for lunch in Bar Harbor the day before my Chemo started, just 5 days after my bleeding/ER/ICU/ready to die? episode, about 2 hours after picking out my future burial site. As I said, nice lunch (lobster rolls for the tourists) and tell them I’m dying. And it went pretty much as expected. Some conversation, 10 minutes at a museum of local Native American art/culture, then Eileen and the cousin’s wife needed to shop. Us guys hung out on the sidewalks of BH, making the smallest possible talk. About three days later a quick call from my brother in NY eating lunch with old friends from NJ. So figure it was Friday. How was chemo? Good, thanks. How was the trip? Great. And then nothing. They had been home long enough to tell their children, my only niece and only nephew. Quiet. Spooky quiet. So Tuesday this week, I called to see if somehow I had insulted them, told them to go away, what? Nothing of the sort - my S-i-L had stumbled over a piece of furniture and maybe broken a rib or two - did i want the details? Here they are anyway. My brother assumed I didn’t want to be bothered; his kids were who knows? Probably too upset to know what to say, waiting until they figured it out. I’m at a polite loss, but Dora is standing right there crying and screaming “what kind of people are you!!!???” I’m all for hanging up, it having been a conversation of normal length, a minute or two, but she is wild with tears and anger and she’s right, of course. Tiger Partner. My family. Now I realize she is all my family and has been for 30 years. How did I get so lucky? This morning I told her she is my hero. So an hour later the phone rings and it’s my nephew - when can he come hang out with me? Here’re the dates he has off work - when’s best? It’s like seeing an apology in a kid’s parent’s handwriting, except he’s well into his 40s. Still no word from my niece. Tonight my brother called to sympathize and lend me an ear. I got off the phone quickly, coldly, and ate dinner. Sitting across from my family. Then the nephew called, but on his Mom’s phone, with her on the speaker, him fronting. She starts with how I never put myself out for the family. I said I would never return to Detroit, a few other things like that, and hung up on her. She’s the matriarch I guess, but she’s never had the familiar, familial touch my mother had. I’m supposed to be hitting the cycle’s low any day now, then feeling better until the 29th, when the poison flows again. But I bought a set of Bose noise reduction headphones (due Monday) to quiet the IV treatment room. thanks, jan
Email 9
10/28/2014 Subject: social, media Date: 10/28/2014 Tumor Interest Group Day 47 I don’t journal, diary, dictate, write down my dreams.I don’t Pinterest, Instagram, text, sext, 4Square, chat, Skype, Facebook, Google+, WordPress, instant message, IRC, MOOG, Vimeo, SmugMug, Snapfish, Shutterfly, Photobucket, Picasa, DeviantART, YouTube, Flickr, Addthis or Sharethis, ePublish, or Blurb (well, I Blurbed once). I OpenTabled a couple of times in Key West, but it didn’t mean anything. I phone or email or just come over. Or I put my interests and compulsions on the wall and don’t hang around. Or I stand in front of people. The semi-annual retreat for Master’s students at Maine Media Workshops + College starts November 6, a Thursday. About 15 students, 2 new students, and eight or so faculty will be very intent on one another until Sunday brunch. I have attended every one since Spring of 1998. Thirty five of them if you count the year we held a third one during the summer. And I’ve asked to present work this time, both images and writings. The work will be what I’ve been thinking of as The Legacy Photographs, and the Tumor Interest Group emails. The Legacy Photographs, caps included, haven’t quite been determined at this point, and I seem to be avoiding them. I’ve always worked in groups of conceptually related photographs, shooting until I learned all that I could from them, then editing down to a fairly small portfolio, maybe 20 - 40, give or take. Then I look for another idea, other subject matter, another way of exploring the problems that have interested me for nearly 40 years. Once done, the photographs have meant very little to me. It isn’t a photograph until its on paper, but then its just another piece of paper. So I always figured I’d destroy whatever I still had before I died. If for no other reason than to spare Dora the need to cart them all to the dump. Ah, but now I really am dying, and they suddenly seem, well, not quite precious, not even valuable, but valued. Hence, this possibly final edit, The Legacy Photographs. And I almost know just what I’ll do with them. The emails? The TIG is responsible for them. Tomorrow is Chemo Dose 2. I wonder what the side effects will be like this time? jan
Email 10
Subject: Stage IV Fright Date: 11/9/2014 Tumor Interest Group Day 59 Ponderable • If a tree falls in the forest and there are extra people around to hear it, is it any louder? Tumor Tales Variations on a theme. If you get a sleeping pill, the 2 a.m. reveille fails to play. Hiccups, on the other hand, are nothing if not dependably repeatable, moment to moment and cycle to cycle. When I consider all the possible, even just all the likely side effects, I am amazing lucky. Well, lucky would be to have smoked all those years and not had lung cancer, but you take what you can get. And I seem to get to keep all or most of my hair, my taste buds, and my appetite. In fact, I can eat seemingly a lot and still lose a pound or so every day. Metabolism, compounded, is much like interest, compounded - except it subtracts away instead of adds up. Tumors lead hectic lives. I have nothing good to say about fatigue, though. I can no longer climb a flight of stairs without a handrail or waiting part way until my breath catches up. No stamina; weak, painful knee joints - side effect? cancer effect? something else entirely? Stabbing hip and leg pain that wakes me at 2 or 3 a.m - ultrasound shows no embolism, but I think I'd like it to go away anyway. More in a moment on that. I can't remember exactly when, but in the last few years I have become pointedly aware of older (that is, older than me) (I hope) people in large parking lots leaning on their shopping carts, oxygen bottle on the shoulder (like a camera bag), making their effortful way to the store. And then back. And back to where, exactly? Their home? A home? A partner? A remote? And then I got lucky. A nice man told me I don't have to worry about becoming decrepit, or about out-living my meager savings and social security, or about depending on the detached kindness of paid strangers. As Faust said, it looked like a good deal until he read the fine print. So. Thursday. Tears do not seem controllable, but then neither does nasal mucus, and while tears have a patina of romance and wistfulness, nasal mucus doesn't seem very manly. Luckily, no spotlight, no drips or splats on my papers. Everybody silently agreeing to behave as if isn't happening, like when the homeless, the perfect Other, approaches on the subway platform. I read out loud, maybe 40 minutes, maybe 2 hours. An introduction, explaining why I have behaved as I have since the mid-70s. Lame, but there it was, finally excused. And then the TIG emails. Finally, a few slides to break the misery and let everyone knowit was ok to go home. Did anyone go to Cuzzy's or Shepard's Pie? What would be talked about over pizza and beer? Out of town is one thing, but what about Broadway? Does it have legs - even if I don't anymore? A mix of relief, exhaustion, and misfiring adrenaline spiced with salt, a plastic cup of wine dregs, and half an Arnold Palmer in my sippy cup. I have no idea what emotions I went through, and I forgot to tape it. But no one walked out early and more people came up to say nice things than stared as if seeing a lunatic. In art school we often spoke of critique as getting up naked on a table, but I always assumed that was just a metaphor. Last night was painful and without much sleep. I've been having shooting pains in my right leg - hip, thigh and calf - that start in the wee hours and drive me either out of bed to hobble around, or to the drugs box. Start with extra strength tylenol pm, move onto some out of date tylenol with codeine, then to morphine, but nothing works. Need to address this in the morning. Saturday after seeing new student work, call cancer institute to see who's on duty. Nurse is sympathetic, of course, but this is still Nixon's war-on-drugs-America, so painkillers have to have hand delivered original prescriptions, nothing called or faxed in, no refills. Her advice, since she is an hour away, is to go to the nearest ER and get what I need. Two and a half hours later (could have gone to Brunswick and returned in the same time) I've had spine/pelvic x-rays to see if I am deteriorated, then a script for Oxycodone. Since I have another med to pick up at my regular pharmacy across the street, I don't bother with the hospital pharmacy. Unfortunately it is 12:10 and they close at noon on Saturday. Fortunately Barry, the pharmacist/owner is still in his car, recognizes me - remember him? He gave me his home phone number - gets out and asks what I need. "Oxycodone" I reply and he unlocks the doors, lets us in, locks the door and goes behind the counter while I pick up a paper to look at. A knock at the door. I turn, someone wants to get in. What I do is turn back around and forget him, what I want to do is wave and say "We're closed, I'm just getting some Oxycodone ." Barry can't be bothered to reboot the register system so he tells me to take the drugs and come back and pay for them whenever. He lets us out and we each drive away. I love being recognized as OK in small town Maine. jan
Email 11
11/9/2014 Subject: Too much Information Date: 11/8/2014 Tumor Interest Group Day 59 Ponderables: • Some things simply out-weigh others. • The Philae spacecraft that landed on comet P67 now weighs only as much as a single pea because the small comet has practically no gravity, but it weighed 46 pounds on earth. • Relatives are relative The last email was about Maine's (or the Fed's) drug paranoia and my landing on Go Directly To ER instead of simply landing on the Pharmacy square and filling a prescription for 5 mg oxycodon, the weakest dosage on the market, suitable for breathless Victorian spinsters and teens with a ten p.m. curfew. A good story, but I elided over the business of the lower back X-ray. Maybe something in the back is causing the leg pain? Here is the report (in blue Futura medium italic, 12 point) and a few comments (back in black, Georgia, Roman, 12 point): REPORT:EXAM: LUMBAR SPINE: DATE OF EXAM: November 8, 2014. Frontal and lateral views show osteoporosis with pronounced narrowing at L5/S1 where there are some endplate osteophytes present. There is some degenerative facet arthropathy in the lower lumbar spine. There is calcific atherosclerosis present with incidental demonstration of a large fecal burden that may indicate constipation. Sclerotic density in the right side on the pelvis near the acetabulum is consistent with a bone island. IMPRESSION: Chronic findings with osteoporosis that appears fairly advanced, clinical data could better determine if CT bone density study would be appropriate. Speaking of old ladies. Osteoporosis. Degenerated (my father was right, but for the wrong reasons). Bone Island (Interestingly enough, the original Spanish name for the low island (cay or key), that holds the older parts of the city of Key West is Cayo Hueso, or Bone Island). And I object. An X-ray is a single image in time. Things present in the image may be slowly moving out of the frame, things not present may be slowly moving in. Why should a piece of shit be denigrated with the label 'large fecal burden' and why does it indicate constipation? I think this interpretation is not, as we often say in crit, "on the wall". Inferences are in the eye of the beholder, they may not be implied by the author. Anyway, I can always blame the morphine and oxycodone. Since every image is worth a thousand words, I should be catching you up. I also had a new CT done on November 10, to see what the chemo has been doing to the tumor. Again, the reports are in blue. REPORT: ABDOMINAL CT ON 11/10/2014 MDCT of the abdomen was done from the lower chest to the upper pelvis during IV contrast administration, with images reformatted in 5 mm axial and 5 mm coronal sections. The findings in the chest are discussed on the formal examination of the same day. The liver and spleen are unremarkable in appearance. There are small calcified stones in the gallbladder, with gallbladder septation present as well, with the biliary tree otherwise unremarkable. There are a large number of cysts in both kidneys. The largest cyst in the right kidney is in the upper pole and measures about 9 cm. The largest cyst in the left kidney is located anteriorly off the mid to lower portion of the kidney, and is roughly spherical with a diameter of about 7 cm with some calcifications in the wall of the cyst. The retroperitoneal structures are otherwise remarkable for some calcific atherosclerosis of the aorta. The adrenal glands are normal. No enlarged nodes are seen. The bowel loops are unremarkable insofar as visualized, except for the presence of a moderately large fecal burden, which may indicate an element of constipation. There is osteoporosis with degenerative disease in the spine, the latter most pronounced at L5-S1. IMPRESSION: There are incidental chronic findings, as noted, with no evidence for metastatic disease in the abdomen. I apologize for my unremarkable liver and spleen. As a child I was told they were adorable, but I guess my parents were just being kind. And now I know I have kidney cysts, and rather large ones at that; and some calcification of the aorta in that neighborhood. And again, the radiologist seems overly interested in fecal matter. Perhaps he had a troubled toilet training. The key point here is whether or not I need to know this stuff. In the old days, when doctors were in charge, you were told what you need to know, or at least what they thought you needed to know. Today, we have MyChart, the internet-based program that the Maine Health system uses to facilitate communication between doctor, patient, and hospital system. So I get the untranslated, unedited reports of my tests and images and I’m responsible for myself. So, is this important? A 9 cm cyst would seem to be something that deserves attention. And if I wasn’t already busy dying of something else, I might just do that. But now? I guess I’ll have to ask one of my several doctors. This is the CT scan done when I went to the ER because I was coughing up blood. The tumor has grown noticeably in only two weeks REPORT: CT angiogram of the chest compared to 09/15/2014. FINDINGS: After administration of 100 cc of Visipaque-320, contiguous axial images of the chest were obtained in 0.6 mm collimation and reformatted into 3 mm thick axial and coronal slices. An additional coronal maximum intensity projection was also obtained to more thoroughly evaluate the pulmonary arteries. There is slight interval increase in size of a large heterogeneous right upper lobe mass which currently measures 5.2 x 8.7 cm. The mass extends from the right apex and is contiguous with adenopathy in the right hilum. The heart is normal in size. There is no filling defect within the pulmonary arteries to suggest embolic disease. Right hilar adenopathy measures over 16 mm. There is an anterior mediastinal lymph node which measures 9 mm in short axis. There is a small hiatal hernia. There are partially visualized cysts in the upper poles of both kidneys. There is nodularity of the left adrenal gland which is unchanged in appearance since 09/15/2014. There is reticular nodular density surrounding the right upper lobe mass which may represent lymphangitic spread of tumor. In the right middle lobe there is no significant interval change in an 8 mm perihilar nodule. Also in the medial segment of the right middle lobe there is a 3-4 mm nodule. In the subpleural location of the superior segment of the right lower lobe there is a 6-7 mm nodule. There is a poorly defined pleural based 4-5 mm nodule in the posterior basal segment of the right lower lobe. There are air cysts within the lung bases. At the extreme lung bases, there are patchy areas of alveolar density which may represent early inflammation. There are stable tiny 5 mm smaller pleural based nodules laterally at the right lung base. There are scattered air cysts throughout the lungs. There is an enlarged collateral which extends in the left periaortic location at the level of the aortic arch and extends into the superior vena cava. The right upper lobe mass does create significant mass effect on the superior vena cava, with the mass effect increased since 09/15/2014. There is generalized decrease in bone mineral density with spondylosis and degenerative disc disease in the thoracic spine. IMPRESSION: Interval increase in size of a right upper lobe mass with increasing mass effect upon the superior vena cava. Stable nodules throughout the right middle and lower lobe. Negative CT pulmonary angiogram. The photographers among you might have noticed that the CT scanner was taking an image every 0.6 mm for the length of my chest, then reconstructing that into 3 mm slices. That is one hell of a lot of photos. Somehow my PET scan never got put in the system and I had to take my copy to PenBay Radiology to have them upload it. 600,000 images. Took a while. If I printed them each on 8 x 10” paper and butted them together, I’d need 500,000 feet of wall space for the exhibit. 94 ¾ miles. A one inch border on each side would increase that by about 19 miles. Of white space. 2,400,000 thumb tacks. Anyway, here’s the good news: REPORT:CHEST CT DONE ON 11/10/2014 MDCT of the chest from the thoracic inlet to the upper abdomen was done during IV contrast administration, and compared to the study done a little less than six weeks ago at the beginning of October. There has been a significant interval decrease in the size of a large paramediastinal mass seen in the right upper lobe. On the same axial image, the maximum dimensions on the previous examination are measured at 8.3 x 5.4 cm, the same dimensions currently measuring 5.9 x 4 cm. There has been interval decrease in the amount of encasement around the upper lobe bronchus, and there is less effacement of the superior vena cava as well. Multiple small nodules in the mediastinum have decreased in size, consistent with interval response to therapy here as well, and suggesting that they are metastatic in origin. No new or enlarging nodes have developed. The findings in the abdomen are discussed on the formal examination this same day. Again seen are findings of underlying chronic lung disease with scattered bullous disease and diffuse interstitial marking prominence. Small nodules elsewhere in the right lung appear to decrease slightly in size in the interval as well, and some alveolar abnormality toward the lung bases on the last examination that was more extensive toward the right base has involved in the interim also. Chronic bony findings are unchanged. IMPRESSION: There has been significant interval response to therapy, with findings as described above, the most significant being the considerable decrease in size of the mass in the medial portion of the right upper lobe. Well, smaller. From 8 cm to 5.9, a decrease of 25%. My oncologist, David Benton, was very pleased, as were Dora and I. I might just live long enough to bore all of you. jan AutoCorrect: Making nonsense out of innocent typos
Email 12
11/22/2014 Subject: General funding: social pressure vs. outcomes Date: 11/8/2014 Tumor Interest Group Day 72 Ponderables • Just as it isn't the big-T Truth anymore, so it isn't the big-C Cancer. There are many versions, both medically and socially. • Actuaries vs. Facebook/Twitter (hereinafter 'TwitFace') • The night after chemo, the first side effect: sleep doesn't happen until 4:30 a.m., after the brain has circled the earth a million times, and many notes have been made for the outlines of the next emails. Miscellaneous night thoughts A conversation with David Benton, my oncologist in Brunswick, three weeks ago about cancer research, i.e. money. I'm going to write my own essay, but the gist and message are what we talked about. The amount of money directed towards specific cancers is a function of who the victims tend to be, sociologically and demographically, and what they are willing and able to do — how much moral standing they have, how much drive and energy, how angry they are, and how appealing to a general audience. Benton talked about how women in their 40s have the drive, energy, social media and organizational skills and (my thought) fear that has brought millions of dollars and tons of publicity to breast cancer, by far the best funded of all cancers. Thinking at night, I decided that an important factor, repeated in the other cancer victims I'll take up, is that everybody — child, man, woman, senior and millennial, loves a breast. Whole industries are devoted to them and their appreciation, singly and in pairs. Everyone is sympathetic and I'll wager, everyone combines different proportions of schadenfreude and genuine empathy. On the other hand, prostate cancer victims tend to be men over 60 who stick to their couches, don't band together with other victims the way breast cancer patients do, have many fewer support groups, public rallies and 5k races, Twitface pages, etc. Much less gets raised for that research. Bald children? Overwhelming sympathy for the purely innocent. Lung Cancer? A look askance at those who probably caused their own misfortunes. And it's true, of course, at least in my case. I can't find adequate numbers on the web for specific cancers other than spending by the National Cancer Institute. Many or most charity sites spend more space telling you why to give, what good they do, but less space (in their annual reports and 990s) on what they give out. However, one interesting (to me, anyway) set of numbers concerns the big four - the cancerswith the largest incidence and death numbers. In order below, with total 2012 government funding in millions and funding per death (real money)
- Lung $ 231 M $ 1,442
- Prostate 378 M 13,419
- Breast 1,043 M 26,398
- Colon 354 M 6,849
Another way to look at the most important cancers is by new cases, expected deaths every year, percentage of all cancer deaths, and 5 year survival rates:
cancer new cases % of cancers est. deaths % deaths 5 yr
- Lung 224,210 13.5 159,260 27.2 16.8 %
- Prostate 233,000 14 29,480 5.0 98.9
- Breast 232,670 14 40,000 6.8 89.2
- Colon/Rectal 136,830 8.2 50,310 8.6 64.7
Two notes: these statistics combine all cancers found at all stages, and the disfiguring and psychological/cultural effects of breast cancer are much more debilitating and ‘public’ than any of the others. However, if one there does seem to be a notable discrepancy if one were interested in improving outcomes and extending life spans. But that assumes that funding and results go together, which is not true. Stage of discovery is likely a more important indicator of results. Too bad lungs have such wide open places to grow a tumor without interfering enough to cause earlier symptoms. Well, enough of this. Next, the world of health insurance and more. jan AutoCorrect: Making nonsense out of innocent typos
Email 13
11/23/2014
Subject: Insurance: the wager on suffering
Date: 11/8/2014
Tumor Interest Group
Day 73
Ponderables:
Why do the insured live in much smaller buildings than the insurers?
How come we don’t have appointed public actuaries if we can't afford our own?
Saturday evening, Sunday morning musings
People on Medicare have until Dec. 7 for open enrollement in Medi-Gap or Medicare Advantage policies. Now is the time when insurance companies are obligated to accept you into any of the plans they offer. I'm not sure how many in the TIG are in this position, but sooner or later . . .
Anyway, I am, so bare with me. This will be a short course, filled I'm sure with errors of which I care to know nothing whatsoever, so keep it to yourself, OK? I did my reading, went for advice, looked at web sites and came back to where I was. Basically, it's a comfort food choice.
Rough definitions:
A Medicare Advantage plan manages your medicare Parts A (hospitals, devices, nursing homes, hospice) and B (doctors) plus can provide a Part D (prescription drugs not given in a Part A facility). It is called a Medicare Part C thingy, for which you pay a fee and sometimes get more than minimal benefits. But you need to stay in the 'network' or the copays rise quickly.
A Medicare Supplemental Insurance plan (“Gap" Plan) is offered by private insurance companies in up to 10 flavors - Plans A, B, C, D, F, F high deductible, G, K, L, M, & N. Plans H, I, & J? Who really knows or cares? These policies pay all or part of the deductibles and copays that exist in Medicare. They cost more than a Medicare Advantage plan, but if done right, you can get sick for nothing. My guess is that are (1) a sop to the insurance companies who are major political contributors, and (2) they keep us from being a single payer system, like the communists and Europeans and other first-world countries
The essential difference I learned in the last week is that Medicare Advantage plans are better if you aren't going to be using many doctors or hospitals, but Supplemental insurance plans are better if you are. And also that Supplemental plans don't cover prescriptions, so you have to find a separate Part D plan from the same or another insurance company, thereby tripling your phone wait time while you are being told how important you are.
So here's the bet: How sick are you going to be in terms of out of pocket spending? Office visits, hospitalizations, imaging tests, stuff like that. My Advantage plan has a limit of $3,400 per year, then it picks everything else up. The best (cheapest) MediGap policy would cost $1,600 more than mine, so it becomes a bargain if my out of pocket costs are between $1,600 and $3,400. But the cost of the separate drug policy eats into that by $288, and when I looked up my usual drugs (cancer prescriptions and my usual stuff for high blood pressure) it turned out that their copays are set so high that they would never be contributing one dime to my costs, just collecting their $24/month. Unbearable to take part in such a scam, and harder to figure out the breakeven point, but now much smaller, for sure.
So, I stayed where I was - I like that they answer the phones and are locally based in Maine.
An interstitial break, from the New Yorker
Enough investigations, enough broad brush, let's get back to me. So during my last chemo treatment a nice woman from the American Cancer Society office in the building stopped by my IV station. She was looking to be helpful and supportive, of course, all giddy with pamphlets and support groups (none near me) for either (a) getting back to "normal" or (b) adjusting to the "new normal", which might not be quite the same but would still be pretty damn good. She was nonplussed to hear that my upcoming "normal" didn't fit any of her pamphlets and that I wouldn't be able to attend support group meetings for very long, but I took both her pamphlets and her white, blue and red multi-section, well-indexed plastic file folder labeled Personal Health Manager. It's only 2" thick, so it'll be full by the end of the year at the rate it's going. It has sections, complete with forms, for:
My Cancer and Treatment
Diagnosis:
Type of treatment(s); Date; Doctors, nurses, social workers; contact info; Notes - 12 lines each
My Treatment Center
Name; Address; Phone number; Web Site
Then lines labeled for names and numbers of 2 doctors, 1 nurse, 1 social worker, and 3 'others'
Appointments/Questions to Ask (includes a plain calendar - no pictures of survivors)
14 lines divided into: Date, Time, Appointment With, Reason for Appointment, Phone, Notes/Questions
Test results
14 lines divided into Date, White blood cell count, Hemoglobin, Platelets, Other, and Notes
My Medicines
14 lines divided into: Date, Medicine, Purpose for medicine, Doctor who prescribed, Dose, When to take, and Notes
Resources and Support
lots of blank lines
Insurance and Bills
lines for notes, divisions for who,what
After Treatment
lines for notes and plans.
And nearly every one has a pamphlet or three in it. I’m betting on the doctor’s face when a patient carries that into the appointment. I'm establishing a lending library for cancer inquiries, please stop by and help yourself. I'm not certain she'll be back anytime soon. New meds to report Gabapentin, 100 mg capsule, one at bedtime. This simply stopped the horrible leg pain I've been having, so hurray. It's a seizure control medicine also used to control nerve pain following shingles. Also works as an anticonvulsant or antiepilectic drug. Side effects: Drowsiness, dizziness, loss of coordination (all good reasons to take it at night), blurred/double vision, unusual eye movements, or tremor. Not so bad. American Ginseng, 2,000 mg per day - that's eight 250 mg capsules each about an inch long and apparently filled with groudn up roots from Wisconsin. Supposed to help relieve fatigue if taken every day for 2 months or so, according to one of my NPs and Mayo Clinic I've been tired and in a poor mood this weekend. Separately, my hair has stopped growing and is getting thinner on the sides. Nothing lasts forever. jan
Email 14
12/3/2014 Subject: Timing is everything Date: 12/3/2014 Tumor Interest Group Episode 14 Day 80 Ponderable: 1. The future is nebulous even when it is certain 2. The devil is in the details 3. What really counts? Sunday after Thanksgiving. It’s becoming a very long weekend, most likely because it starts high on Thursday with a double-helping dinner at 2:00, and proceeds to creep lower by the hour until it crashes into 60 Minutes, whenever the football is finally over. Tangent: It appears we have decided, as a society, at least two things that sadden but no longer surprise me. First, that we accept (2013, CDC) 32, 351 deaths by firearms, just about one every 15 minutes, around the clock, around the year. That includes about 1,500 age 18 or younger (nationwidechildrens.org) (more than 4 each and every day) as a price we are willing to pay in order to keep on interpreting the 2nd Amendment the way we want to rather than the way it was written, and second, that because we are willing to see young men bash themselves into horrible-to-behold early disability and death for entertainment and vicarious savagery, we assume the natural corollary: that those young men are allowed to keep their ‘fighting attitudes’ by bashing young women unconscious. What a country. End tangent. The weeks are now falling into a regular pattern. Chemo on Wednesday. Thursday awake at maybe 3 am. Occasional stream of 3-4 hiccups Wednesday, Thursday, & Friday, never quite enough to reach for a pill, just enough to make both our ears perk up, to become aware of my stomach, to gently remind us of what the undercurrent of our lives is, in case we forgot for the moment. Hiccups could be a great ringtone. Fatigue starts Thursday and is over the following Wednesday - one week of can’t walk a block, can’t climb a flight of stairs without a hand rail, can’t do more than one or two errands a day. Fatigue is accompanied, unfailingly, by depression and temper. If I had the strength, I’d fight with you. I’ve been very lucky about side effects - very few, very light. My body tolerates the chemicals. Doesn’t improve my time line, but makes it easier to get there. But the fatigue is pretty real. Wednesday Miscellaneous; 1) Richard Ford’s latest book, Let Me Be Frank With You isn’t as good as his others, but its four longish stories about Frank Bascomb at 68 and worried about how to live his life. Each story has death and dying as a theme or subplot. Since I’m also 68 . . .Anyway, there are some good lines in it. to wit: "Life is about pain management” - soon coming to a bumper sticker near you. 2) I have a pair of moccasins that I've use around the house for years. I don't know how many years, but its the second pair since we moved here 17 years ago, so old. They have a double layer of leather instead of a regular outsole. The left one has a hole, maybe 2" diameter, in the outer layer of leather. The question is, should I buy a new pair. What's the point? 3) At the moment I have just over 800 real books and 55 e-books, not all of them read. My Amazon wish lists have 65 more. Lacy at Hello Hello Books has a credit for me of over $100 from books I have given her to resell. And yet this morning I ordered two new books on sale from Oxford University Press. And tonight I ordered two more from Hello Hello. 4) I'm reading the first of a two volume biography of Charles Darwin by Janet Browne. Highly recommended if Darwin is of interest to you, otherwise, not so much. Darwin is just 22 when he goes on the Beagle, He's finished college - didn't become a doctor of medicine at Edinburgh University as his father expected, nor did he do more than a year or so at Cambridge, studying natural history mostly by skipping classes and hanging out with teachers. He has no reputation or standing in the field, gets the Beagle post not as the ship's naturalist, which is usually done by the medical doctor on board, but by being recommended through the Cambridge old-boys (no girls then) network as a suitable gentleman companion for the young aristocratic captain, FitzRoy (from the line of the dukes of Grafton, which stemmed from the illegitimate children of Charles II and Barbara Villiers). As the captain's personal guest and dining partner (with dad paying his way yet again) Darwin easily outmaneuvered the ship's doctor, who got very pissed off and went home from the second port of call. Is there a point to this? Yes, this paragraph: He had never felt any urge to record his feelings before. For him, as for others, it took some kind of crisis in his personal life to propel him into action. Only a dramatic upheaval could convince him of the need to make a record of the times he was living through. Faced with a long voyage, fully aware that a new kind of shipboard adventure was starting, emotions at bursting point, painfully conscious that he was stepping out into an unknown world without his usual solicitous empire of family and friends, Darwin plainly believed the occasion should not pass unremarked. Made me read it twice, I'll say that. Medical: So I had an MRI on my lower back to see if the pain is due to bone cancer (small chance, not at issue apparently) or a disk. And the winner is my L5S1 disk, the most fragile and susceptible. Seems it isn't enough to have cancer, especially if the cancer isn't yet painful. I have choices, according to my Primary - back surgery (neither of us liked that one), drugs (working now, but any future need is unclear, so best to not get too used to them), and an injection in the exposed disk vicinity to reduce the swelling. I have had that before, and it worked for many years. I will not make the same mistake again, though — when the man says bend over the table and don't look back, I won't. Its not a sight one needs twice. Next week another check in with Benton, the oncologist, before treatment #4. This time I need to ask him for an honest talk about what it will be like after the chemo stops working, which it will at some point. How long, and what's it like. jan
Email 15
12/18/2014 Subject: the unamusement park Date: 12/18/2014 Tumor Interest Group Episode 15 Day 95 Saturday 8:00 p.m. Actually, there was no Saturday, 8:00 a.m. because I slept right through it. Usually the night I get chemo I awake around 3:00 a.m., which happened, right on schedule. Surprising how repeatable the side effects are, but always with variations on a theme, like Bach’s Goldberg Variations, only not as lovely. This time Friday afternoon brought the usual hiccups, but Friday night also brought sleeplessness. Turned the light off at 10, got up at 11:30 to take a Lorazipram (hiccup and sleep med - actually just another anti-psychotic. No one will know if I go crazy, even me.) It has to mean something that Pharma has so much demand for anti- psychotics — either we are (a) breeding more psychosis, which I see all around me anyway, or (b) cancer and psychosis have something in common (fear? disruption of the norm?), or (c) that cancer drives people psychotic? (hearing voices speaking in strange jargon?, looking for the pure light to float into?) Merriam-Webster on LineDefinition of PSYCHOSIS:fundamental derangement of the mind (as in schizophrenia) characterized by defective or lost contact with reality especially as evidenced by delusions, hallucinations, and disorganized speech and behavior. see below At any rate, another Lorazipam at 2:00, and two Extra Strength Tylenol PM at 4:00. Awake basically on California time. This episode, this moment, I am writing with fatigue, and have decided to write each day until the side effects dissipate around next Wednesday/Thursday/Whenever. Wednesday: Treatment 4. This is when Benton confirmed what we thought, that the treatment is going well enough that we can cut the Cisplatin out of the cocktail starting the 30th. That means going from 4 hour treatments to under one hour - the newer drug does not attack the kidneys as badly, so less saline, less Lacix, faster in and out (of the clinic, not the kidneys). We'll see how long the Pemetrexed works by itself. Cisplatin may come back someday, or some new drug fresh out of trials, looking to make a name for itself and a billion for its maker. Did I ever mention that Cisplatin costs $60 and change while the Pemexetred costs $8,800? Also Wednesday, needle issues: after giving blood for tests, always easy - Heidi, born 3/9 (they always ask me, so sometimes I like to also show interest), the first attempt into a small vein on my wrist for the IV missed, sliding up along side without penetrating, just seeming to rip and tear. The next one fell out of the vein partway through the first chemo. That causes burning and lots of swelling, but no serious damage. Needs an ice pack. (I now have a nice chemical burn on my wrist, from the inside out.) Third try, different arm, went fine. All the while the woman in the next chair, Alyson, asked why I didn't have a port. That's a spongy thingy beneath the skin with a tube running to a main vein that makes injection life easier. Oh. Well, I originally thought after 6 treatments, my maintenance treatments would be much further apart, perhaps every 7,500 miles. Not so - 3 weeks, no change, until the chemicals simply stop working. So this coming Wednesday I get a port. Outpatient surgery in Brunswick. Piece of cake. Thursday: tired early, per usual. Early, early wakeup. Dora shoving tea at me whenever she thinks I need to clean my kidneys, which is often. Friday: Out to lunch, Chase's in Belfast. Rest of the day is unclear. Saturday: two visitors, morning and afternoon, then a nap before dinner, then this writing, then, just before 9:00, upstairs to see how much Darwin I can't read before I can't anymore. ———————————- Well, now it's 3:00 pm Thursday the 18th, so you can see that Sunday through Wednesday are missing, that I didn't actually write a day by day momento mori. That's because this week was, how to say it, unamusing. Fatigue lasts me a week and keeps getting deeper - starting slowly the day after treatment and finally abating the following Wednesday. Mostly. There are several components to what I get and I've tried this time to pay closer attention, because they make both of our lives miserable for a few days, but I've been feeling so tired that I didn't notice the rest of it. There's tired, of course: head dropping, missing-in-action tired that simply makes the world pretty much out of focus, beyond concern. But the side effect to th side effect is that I just don't give much of a shit about anything or anybody, have zero patience because effort is required, and, like whenever I'm ill, I want to be left alone, but still be sorry for me, of course. Dora is here, and whoever is here gets the brunt of it, so we fight, yell, and look for small, hard objects we might just throw, but never seem to. My fault, but stating the obvious is of much help. Yelling is yelling, being nasty is being nasty, and she's feeling her own side and main effects of all this; doesn't need me adding to the load. Additional stuff surrounds all this week. Monday I went for my annual physical, except it has changed. No more planning on colonoscopies every five years or doing a PSA test to watch for prostate cancer. Now it's just talk about how pain management has come a long way, and keeping my immunizations up to date, seeing my eye doctor because I like and depend on reading, and by the way my blood pressure, which has been medicated for many years to keep it low enough, has dropped. Hey - might be adding to the fatigue, right? Anybody remember Carter’s Little Liver Pills? So off my medications, take my own pressure and let's get it back to normal, even a bit high because, after all, who cares now? Got enough morphine and oxycodone? Tuesday I moped around. Wednesday we drove back and forth in heavy rain to Brunswick's hospital to get a port installed in my chest. The size of a nickel, it gets stitched under the skin, and has a tube that gets threaded up and inserted in, I believe he said, the jugular vein, which I always thought one should avoid poking, prodding and cutting into. Hanging out on a stretcher, with a needle in my arm for good luck (and sedative) — the black and blue mark is 1" x 2", very dark blue and black, like Van Gogh did it on a crow-filled day. When the surgeon (interventional radiologist {— Wiki = medical sub-specialty of radiology that uses minimally invasive image-guided procedures to diagnose and treat diseases in nearly every organ system.} came in I reached to shake hands and he said, (not making this up) "I can't, I have a cold"When I asked why he was operating with a cold, he said he would double mask and double glove. Of course, I was sedated and had a sterile cloth over me face when he arrived in the OR, so for all I know he was starkers with a top hat and cane. I now have a small scar over my right breast with a raised circle beneath it so anyone can find my port (actually it is a "Smart Port® " from the good people at AngioDynamics® in Queensbury, NY, between Lake George and Glens Falls). Then, if you wanted to, you could feel the tube going up toward my throat, where there is another small scar, and something under the skin. We'll see what the TSA thinks of all this in April. No pain, a bit of 'discomfort' sleeping on that side, and faint visions of the tube popping out and my jugular doing a Texas Chainsaw Massacre effect. Luckily, I don't have guy-friends that greet you with a punch in the chest. Then yesterday, Wednesday, I had a tooth ache. Truly, there is no god. Today to the dentist, who calls for a root canal, assumes there is an infection, orders up some penicillin to try and keep everything under control until I can see the endodontist, who looks 18 in his website picture and doesn't mention where he went to school. That'll be January 19th, 4 p.m. At the pharmacy, I get out, go around the car, drop the Rx, which floats slowly under the car. I’m on both knees, wet pavement, clean Levis, reaching for it easy enough, but then I have to get to my feet and my knees aren’t cooperating. Takes a bit. Adds to the flavor of the week. Finally, in watching myself this week I confirmed something Dora said about this time after last treatment. I am voluble. Merriam-Webster on-line Voluble 1. Easily rolling or turning 2. Characterized by ready or rapid speech No one has tried rolling me, but #2 is dead on. (Actually she said I wouldn’t shut up and people were looking at me.) I simply won't shut up, especially if someone we both knows calls for Dora and I answer; I'm talking louder than necessary, and I know it, but don't seem able to cull it very quickly. I have to watch this week and see how long that lasts. So if I do that to you, just give me a gentle shove on the chest and back away. jan