April 2, 2019

Chemo Day 7. The oral thrush came back. Painful, white wall-to-wall carpeting for my mouth and throat. Got on top of the medication much faster this time, so hopefully it will be gone soon.

I’m doing it! I’m proceeding down the chemo path. I think this is basically happening according to plan. The way it makes my body feel is entirely different from anything else I’ve ever felt. I keep checking it against what happened last time, what the nurse triage line tells me, and filling in with the assumption that if what I’m feeling could logically be explained by being repeatedly poisoned, it’s probably okay.

A lot of it could also be explained if I was dying, right now.

I was prepared for my hair to fall out. I wasn’t prepared for feeling so entirely sick when I was pulling it out in handfuls. Not because I was sad about losing my hair, but in that moment, it was a sickening feeling of “This isn’t right.” This doesn’t happen to well and healthy people. This is not a sign of vigor. It’s like cutting your hand in the kitchen; not a big deal until you can see your tendons. THAT’S bad.

What I feel like right now, to varying degrees from minute to minute, isn’t right. The last chemo round, I didn’t realize I’d become septic because I just assumed that all of it was chemo-related bullshit. I always thought I’d recognize if things took a real bad turn. I kind of missed it in the past weeks. I managed to get myself heroically saved from death once before, a long time ago. Have I lost my ability to recognize the signs?

But then how do I keep moving forward when I’m possibly dying? The trick is adjusting the dose of Ativan so I’m not constantly worrying that every breath could be my last, while not drugging myself into an oblivion blind to real problems. I don’t have the right balance yet.

I go to sleep to a little voice whispering, “This is what organ failure feels like...goodnight!”

March 31, 2019

Chemo 2, Day 5! Not so bad this time around. A lot of heartburn. I feel good overall, but it's on very shaky footing. Everything can be great, but if a tiny wave of lightheadedness hits me, it can snowball into full-out panic, for absolutely no reason. I'm physically shaky. The pain manifests in nerve twinges in my hands and legs. I step, and my ankle wobbles and collapses. The pain rolls around, billowing and vanishing, then back again to lock down like a charley horse. The drugs dull it a little but don't take it away.

I have to stay on track: smoke pot before eating, eat before taking narcotics. Decide at night what I think my biggest issue is at the moment: pain, or the ability to stay asleep?

Basically, I can't take all the drugs all at the same time. I still haven't mastered the perfect formula.

I'm having zero nausea. None. The only twinges came when I was piling on to a hysterical almost panic attack. If something is going wrong and you're probably going to die, vomiting will definitely be part of it. Everyone knows that.

March 27, 2019

My night last night after dosing on steroids was long and uneventful, and didn't include sleeping. I looked up lots of stuff on the internet, like places that make murals out of photographs. You can get a 8 ft by 5 ft mural for less than $300, doesn't that seem cheap? Out of boredom, I took a shower at 4 am. While I thought I slept approximately zero minutes, Bob says he did hear me snoring occasionally. (He was apparently sleeping soundly all night, so I don't know when that happened.)

The chemo story today was also long and uneventful. We were at the hospital from 9 am to 3 pm. The things that made it long were boring, like the lab switching over to a new system and being way behind. (My oncologist has to see my blood work to make sure I'm healthy enough to get poisoned.)

Because we kept the steroid train rolling today, I'm still awake and feeling good! Now, for the next two days, I have to remember to close the lid on the toilet after I pee -- and flush twice, so Bob doesn't catch my chemo. He kissed me tonight and then complained his lips were burning. It might be too late for him.

I hatched a new plan with my oncologist, and that plan involves narcotics for pain. Regular, stay-ahead-of-the-pain consumption on the bad days, not finally taking some when I can't stand it any more. And I will be pulling back my steroid use in the future, as these steroids are mainly used to combat nausea. I really didn't have a nausea problem at all last time, and I have four other anti-nausea drugs in my drug basket if needed. Narcotics are good. Steroids are gross. I'm excited about the new plan.

I got a nice hand massage from a very, very chatty volunteer. Judy is a retiree, and a breast cancer survivor. She really wanted me to take home the catalogue of the store with bras and fake boobs, and be sure to have my oncologist write me a prescription for falsies so I could get some free. Still too great a price to pay for wearing a bra, for any reason, ever again.

March 26, 2019

Tomorrow chemo starts again. I’ve started the “day before” regime of taking oral steroids. I’ve been off the antibiotic for a week, and my last chemo side effects are long gone. I’m feeling normal, though “normal” is a rapidly moving target.

I had looked forward to being smooth as a baby mouse, but my head feels much more like a cat’s tongue than a cue ball. Straight white hairs are sprouting, giving me a psych-ward sheen, and the few black hairs on my chin have returned. Apparently both are buoyed by poison and mean thoughts. This next chemo infusion will beat them back into submission temporarily, but now I know they will be the first to return. Like cockroaches. Motherfuckers.

I started the steroids this morning; more tonight, then again tomorrow (chemo day) and the following day. Just to get me through the assault of poison. I’m sweaty and jangly, and predict spotty sleep. But hey, otherwise I feel great!

I was talking through my game plan with Bob, who pointed out that I’ll be really good at chemo by the time I’m done. Life skills: chemo. I feel like I’ve learned a few things already, based on the first round. My knowledge is a bit uncertain, because I’m not sure where and when the chemo symptoms and the septicemia symptoms began to overlap.

The chemo side effects are so alien, it’s impossible to know, especially at first, what’s in the bounds of “normal.” Everybody knows about hair loss and nausea. That was actually the sum total of my chemo knowledge until a few months ago. I now know there’s so much more, and there’s a remedy for every chemo malady. But some of them are bullshit.

I will probably feel pretty good (if a bit amped and sleepless) tomorrow (Chemo Wednesday) until Friday night. Last time around, I knew the honeymoon was over when I needed to lie down on the couch during evening TV time on Day 3. The following day, I could barely walk up the stairs.

Saturday will be suck day. Sunday, slightly better but also bad. Last time I called the oncology nurse triage line often, just to check: “I’m having extremely painful body jolts. I think my bone marrow is cramping. Or my joints. Maybe my muscles, all of it. Do others mention this?” Yes! Yes, they do. Many get relief from Claritin.

Claritin, the allergy medication? Yes! Okay. A friend going through chemo confirmed, but said it took time to kick in. I started right away. It did nothing. I toughed it out, assuming relief was imminent. Mistake. On another nurse line call later in the week, it was suggested that I try Cetirizine (Zyrtec) instead of the Claritin for some wizardly reason, and I pointed out that I’d been taking Cetirizine for my allergies every goddamned day for years – up until days earlier when I switched to Claritin. Conclusion: Total bullshit. New this round: Pain is pain, and pain requires narcotics. Body jolts get Norco/Vicodin.

On the nights I couldn’t sleep, I dabbled in Melatonin and medical marijuana capsules. The pot makes my heart pound and isn’t quite strong enough to knock me out, so I was mostly awake stressing about my banging heart. Conclusion: Bullshit. Stop fucking around. During steroid time, Ambien. If trouble sleeping the rest of the time, start with Ativan.

Ambien doesn’t even knock me out – anyone have some Ketamine? Enough to get me through May? In addition to tranquilizing horses and assisting with date rape, it apparently helps human depression. Like if you’re bummed about cancer, and terrified that even if you live through chemo it will come back. Sounds perfect. Not the date rape. I could be a focus group of one. N = 1. The results wouldn’t be statistically significant, but they could be wildly informative.

Last time I developed oral thrush very quickly, which is extremely uncomfortable: a swollen, sensitive tongue and absolutely raw throat. Conclusion: I know the signs now, and there is real, not voodoo bullshit, medication that stops it almost immediately. Yay.

I had such a magical plan imagined for chemo survival last time: lengthy walks, leisurely naps, full seasons of The British Baking Show. Therapeutic detox saunas, dry brushing, yoga, meditation. Green tea, CBD-infused tea, chaga mushroom tea. An exclusive diet of healthy nuts, fruits and vegetables, with some organic meat. Conclusion: Bullshit. I’m narrowing my focus, simplifying: Anti-nausea meds. Microwave popcorn. Narcotics. Miralax or Imodium, depending.

Still dialing in the pot usage. Will be skipping pot at night. I will be more diligent about vaping pot before meals, to help prevent gastric distress once the food hits my gut.

And I now understand how the oncology nurse triage line works. I will continue to call with any and every question. However, there’s one guy (like only one, the rest are women) who works as an oncology triage nurse, and I don’t like him. I’m extremely lucky that I feel heard and believed in pretty much all aspects of my life, and for whatever reason I’m able to demand it if it’s not happening (whatever reason = white, entitled, insured, have money). Except when I’m feeble, poisoned and unsure of whether I’m dying. Given the opportunities, John didn’t help. So he’s out. I’ve been tipped off that if he answers, I can request the other triage nurse (there’s always another one). I’m from MN, so pretty much 98% chance I just hang up if John answers. Everyone else is a supportive, sympathetic angel, even if they do try to hoodwink me with some bullshit hippie allergy medication remedy.

Earlier today I told Bob that I’d started the steroids in prep for chemo, and apparently I was being a little snappy or something, because he said, “I can tell.”

Bob is now dead, unfortunately. I’m trying to teach the dog to administer Zofran and Ativan. Stay tuned.

March 23, 2019

Kate: Do you think you could try to put the dirty dishes into the dishwasher, instead of just piling them in the sink?

Bob: To confirm, we're talking about your dirty dishes that I pick up off the coffee table and bring to the kitchen?

Kate: . . .

In other news, Bob announced that I’m now well enough for him to tell me to “zip it.” I thought maybe I hadn’t needed to be told to zip it this whole time, but Bob assured me he held off because I was sick.

March 19, 2019

In case you're curious: this is what my IV antibiotics look like. Each dose comes pre-loaded into an automatic pump that sort of looks like an ugly Christmas ornament. Even though they call it a pump, it doesn't really have any pumping action. More like a balloon that empties. The round part is about the size of an egg, maybe a little bigger. It drains into my arm over a half-hour, and when it's done it looks like the one in the bottom of the photo. And it goes in the garbage.

The other picture is my PICC line and the bandage covering it to keep it clean. (There's just a small hole that goes into my vein, but it can't get contaminated or pulled on.) I twist a pre-filled syringe of saline onto the line to flush it, then I connect the antibiotics. I put the ball in my pocket and continue with my day. When it's done, I flush the line with saline again and cap it. Easy peasy.

As I was taking the picture of the PICC line, I watched a big air bubble travel the line and disappear into my arm. I thought, "Oh, fuck, this is how it ends," and waited to die, but never did.

March 17, 2019

No news is good news. We've been in Minneapolis the past week. I’m into my fourth week of IV antibiotics, which seems insane. It is insane. I hook up 700 mg of Daptomycin to run into my arm every day. My first and only (so far) chemo infusion was February 1. The side effects of chemo are long gone. I’m still bald, but a few sturdy follicles managed to withstand the poison, so I have a light fuzz covering my head.

I still have eyebrows. DON’T TOUCH THEM. Don’t even look at them. I want them to stay, if possible. I’ll certainly fuck up drawing on new eyebrows. Or once I get them on, I’ll undoubtedly forget and smudge them. Maybe I should go get them tattooed. Or just keep filling them in with Sharpie. That could work.

I don’t mind being bald. It’s chilly – which you’d imagine, but I’m still surprised at how much so. I wear a hat all the time; I sleep in a hat. Without hair, there’s not much to do in the shower. It takes me as long to get the sleeve that covers my PICC line situated (the dressing keeping it clean can’t get wet) as it does to actually shower. Get in, get wet, soap, rinse, think I must be missing something, get out.

I still have a special dressing for the hole in my chest from where the infected port was removed. At my wound care appointment at the hospital this week, I was told I could safely take it from here. I change the dressing every other day (on bathing day, usually). The hole is getting much smaller. I still cover it with a special anti-bacterial fabric and then a big bandage. The bandages have a silicone adhesive, as I can’t tolerate most other adhesives. They cost $16 EACH. Sixteen-dollar band-aids. I could have a nice lunch, or this band-aid.

My insurance is paying for those bandages. I’m very lucky to have excellent health insurance. They also pay for a home health nurse to come to my house once a week, draw blood for labs, and change my PICC line dressing. A new study in the American Journal of Medicine just came out saying that 42% of new cancer patients lose all of their life savings in two years (paying for treatment), and 62% of cancer patients are in debt because of their treatment. As we’re self-employed, Bob and I pay for our own health insurance. $1350 a month (total for both of us), plus we each have a $2,000 deductible/out of pocket max. That comes to $10,100 each for 2019. Knowing our track record with catastrophic health events, it’s been a good gamble to prioritize paying for excellent health plans. So far my medical expenses are over $55,000 for this year – and my hospital stay hasn’t been billed yet. That $10,100 is a bargain.

Wednesday should be my last dose of IV antibiotics. Then I have a week off, drug free, until March 27, which will be my second chemo infusion. I’ve been feeling pretty good. The antibiotics make me tired. Or maybe it’s the weather, the current state of the world, or our astounding twat of a president. I sleep 10-12 hours a day. My belly is a bit off, also from the antibiotics, I’d guess. I’ve been doing as much pro-biotic supplementing as I can: yogurt, kefir, kombucha, actual pro-biotic supplements. I’m not hungry for anything. I don’t have an upset stomach; just disinterest. This is an entirely foreign concept for me. There are only a couple things that actually sound good: Noosa yogurt, grapefruits, and the peanut butter bars at Butter bakery. We’ve never had ice cream sit this long, unopened.

This week when everyone in Minneapolis was experiencing flooded basements, our tactic was to not look downstairs and thus have plausible deniability that it was happening. This worked until we could hear the cats splashing and there was evidence of their wet paw prints everywhere. A flooded basement is really bad news for a hoarder. And after doing fuck all since November, it was a shock to my body to be down moving boxes around and running the shop vac. I’m happy to report that my foresight of hoarding into plastic bins has served me well, and nothing was damaged. We were able to find the cause of the problem – a gutter down-spout draining along the foundation of the house – and re-route it.

Scintillating news, all of it. No wonder I’m sleeping so much. I don’t even have a good Bob story, except that once we identified the downspout problem that was causing water to flow into our basement like a mighty river, Bob announced that he was going to work on some other things first, before fixing the downspout. I was able to help him see the benefit of re-prioritizing his tasks, so he continues to live.

March 7, 2019

Making plans is useless. I had started building my calendar over the next few months around my rescheduled chemo infusions: I can do stuff two days after, then need to plan to be out of commission for two or three days, then will likely be increasingly fine until the next infusion.

That’s all out the window. We saw my infectious disease doctor Tuesday, which I assumed would be the last day of my IV antibiotics. She wasn’t happy with how quickly my body recovered after the infected port was removed, indicating to her that a more pernicious infection had taken hold in my vein. I still have some inflammatory blood markers higher than she’d like, and given that I’m about to immediately take another hit to my immune system with the next dose of chemo, she’s being conservative and keeping me on the IV antibiotics for two more weeks. Bob points out that there's no immediate threat of cancer killing me, but a bad infection easily could, so why not make sure it's gone.

Argh. So my next chemo (the second of four) will be March 27. Nothing to do but make the best of this extended chemo holiday, I guess. We decided I was healthy enough to go back to the cabin. After we arrived Tuesday night, Bob used the bathroom and the toilet didn’t seem to be working properly. After some degree of plunging and flushing, plunging and flushing, he fixed it – except for the part where the shit water came burbling up into the shower, tub, and through the floor drain.

The rising tide of shit water resulted in a frenzied spurt of activity – moving things out of the path, frantically making calls to anyone who might be able to fix whatever the problem might be, encouraging pets not to walk through the shit puddles and then jump on the kitchen counter. Trying to keep shit water paws out of the bed. Mostly futile efforts.

I called my dad first, to see if he knew who I should call: my septic pumping guy? The plumber? My builder? (I eventually worked through this whole list.) Dad said, “What do you mean, the toilets aren’t flushing?” and I descriptively spelled out that the shit that started in the toilet was now running across the floor. This might have been the best news my father has ever received. He’s been disgusted at the extravagance of our TWO bathrooms in this small cabin. No one needs two bathrooms, for Christ’s sake. Especially when there’s an outhouse right out back.

This was the moment. He could hardly contain his glee, “You’ll have to use the outhouse!” My dad has a perverse obsession with us using the outhouse. He’s offered to fix it up for me, maybe sweep out the piles of dead flies. It’s already wired with a light. He reminded me that there’s a sheet of Styrofoam in the shed that can be cut to fit over the toilet seat so it won’t be so cold. Maybe we could replace the toilet paper rodents shredded.

I would sooner pee in the snowbank directly outside our door. Luckily, we didn’t need to make long-term plans, as the problem was identified: we have a liquid propane-fueled boiler, from which a small amount of condensation drips down the drain. The problem is that when the cabin isn’t being used, and large amounts of water aren’t going through the line, the drips get to the cold part of the septic pipe and freeze, drip by drip, until an ice dam is formed in our septic line and nothing can get through to the tank. The problem can be solved by diverting those drips to a bucket. The ice dam is removed by contacting a septic company that does "steaming and jetting," and they come out the next morning, poke a hose up through the septic line and run steam through it until the ice dam is melted. This cost $318, which seemed like a bargain, as we were prepared to pay one million dollars.

March 4, 2019

I’m enjoying a brief respite until Monday the 11th, when I have my second chemo infusion. Currently I have no chemo side effects, my blood infection gone – the IV antibiotics make me a little tired, but other than that, I’m pretty much back to normal. My infusion on Monday will go through my PICC line, which pokes out of my right arm just above my elbow. How I’ll get the last two infusions is still unclear; seems a bit much to have a new port installed just for that, so maybe I’ll keep the PICC line? Time will tell. I’ve confirmed that even though I’ve now had a longer than projected pause between my first and second chemo infusions, I am still on track to do a total of four. We’re just a little bit behind schedule, but it’s fine.

All of the bullshit happened after only my first chemo infusion. Three more to go!

I may have mentioned before that Bob’s rock stage name is Dr. Nasty, because he “didn’t go to four years of nasty medical school to be called Mister.” I’ve now had a chance to learn more about what exactly he studied at nasty medical school.

He’s able to do a medical-ish examination and predict “a full recovery.” 
Dispense pills: Absolutely.
Check temperature with oral thermometer: Yes.
Attend all medical appointments with the patient: Yes. 
Bring food and supplies as requested by hospitalized patient: More or less.
Prepare food and snacks for patient: Yes.
Assist in wound care: Hell no.

I think the majority of his studies focused on leather apparel and managing groupies. But he continues to do an excellent job overall.

Bob says he knows I’m feeling better because I’ve ramped up my various vendettas. I continue to do battle with Instacart, after being charged $9.99 for $1.40 worth of herbed Neufchatel. I will not tolerate such fraudulent bullshit. I made sure to copy poor Betsy from the Wedge customer service just to expand the circle of people who know I’m a volatile wingnut.

I’ve taken against my home health nurse who comes weekly to change my PICC line bandage and draw blood for labs. The first time she was incredulous that I wanted an appointment later than 10 a.m., and was pushy about asking for a reason why. It turned out to be the only time she was available, so it’s not like I really had a choice. She made a big deal about scheduling me for 11 a.m. today to “better fit my schedule.” But what good is that when she showed up 15 minutes early? The nurse was disparaging about the amount of pet hair in my recovery lair. And she wouldn’t let pets participate at all, so they put on an amazing display as she was leaving: Abbie was doing some deep intimate sniffing that she couldn’t ward off as her hands were full, and Balto the cat attempted an incredible acrobatic leap through the air and super-fast zoom up the stairs, but he slipped and crashed kind of hard. A normal person wouldn’t know there are dog treats in the kombucha bottle in the middle of the living room floor, and would assume we just have garbage laying around. I was in pet-hair covered pajamas both visits. By all appearances, it’s a total shit show over here.

But I’m great! I’m obsessed with The Zoo, the behind-the-scenes TV show about the animals at the Bronx zoo. I needed something to take my mind off constantly thinking about Schitt’s Creek, the best show ever that you should watch immediately if you haven’t already, and then tell me what parts you love the best.

February 24, 2019

And we’re back! I got home from the hospital on Thursday, after near-death fun times with blood poisoning. This is what you worry about with chemo – you’ll get an infection that under normal circumstances would be no big deal, it enters your bloodstream, it’s transported quickly to other essential organs, antibiotics can’t stop it, and you die. Exactly this happened to a friend and colleague a couple years ago. It’s not lost on me how lucky I was to get the medical help I needed (thanks to Bob), and that my doctors were able to quickly figure out what antibiotic cocktail would be most effective in fighting the infection. Four days in the hospital with IV antibiotics and lots of IV fluids helped kill it off. I have a PICC line in my arm through which I’m doing a dose of IV antibiotics once a day until March 5. I can start up chemo again any time after that. I look forward to seeing how the chemo side effects are without septicemia symptoms piled on. Maybe it won’t be so bad. And now that I’ve got the horrible infection out of the way, the rest will be smooth sailing, right?

I’ve mentioned that because I had lymph nodes removed from my left armpit, my left arm can’t be used for blood draws or blood pressure tests any more. There was a sign on the door of my hospital room, a sign above my bed, and, lest anyone forget, a neon wristband on my left wrist warning people away from that arm. As a result, my left arm is pristine, suitable for arm modeling, while my right arm looks like an advertisement warning against IV drug use. Completely bruised and full of track marks, it’s a mess.

I got in trouble in the hospital. One night I couldn’t fall asleep, and didn’t want to bother my nurse, so I helped myself to the Ativan in my purse. The next time my nurse came into my room, I told her that I’d taken the Ativan, as I figured she’d want to track that. “What? Where did you get it?” “From my purse. Purse pills.” “’Purse pills’? You can’t have purse pills.”

Well, nobody asked about my purse pills. How else am I going to carry pills around, in my pockets? The next morning, my day nurse was sent in to take my purse pills away. They were catalogued and sent down to the pharmacy for safe keeping. There were a couple issues, as noted on my inventory sheet: Lorazepam 1mg 8 and ½ round tablets, and 4 oval tablets. (I intermingled some Norco with the Lorazepam.) And I had some medical marijuana capsules, which they listed as “Patient’s husband’s medication.” Oops.

Before I was released from the hospital, I got a lesson in hooking up the antibiotic IV infusion. The nurse blanched at the idea that I have a puppy and two kitties who would be eager to help. She stressed the importance of wiping down the counter with antibacterial wipes, and setting down a paper towel to hold my supplies.

I could see how this would go at my house. Clean off counter. Place paper towel on counter. Cat materializes out of nowhere. Cat sits on paper towel.

It’s great to be home. For those of you who like cooking for other people, our friend Mary has re-booted the Meal Train. I appreciate all of the support very much!! Bob does, too...this has all been pretty stressful for him. But he's hanging in there, gradually learning more and more medical skills.

https://www.mealtrain.com/trains/34nk28

February 19, 2019

So. As Bob reported, I’m at Park Nicollet Methodist Hospital, after being admitted Sunday with a bad bacterial blood infection likely caused by my chemo port. When I had my first chemo infusion, I asked my oncologist what I needed to be doing to protect myself from infections. He told me it’s most common to see infections sprouting from the bacteria that already live on our bodies. Fast forward 19 days, and here we are.

After our Fergus Falls Emergency Department visit Wednesday night, the days passed with antibiotics in my body yet no improvement. We left the cabin a few days earlier than planned and drove straight to the Methodist ER in Minneapolis (St. Louis Park, technically). It’s about a 2 hour and 45 minute drive. I told Bob to drop me off and take the pets home, but he insisted on coming in. The ER doc recognized me – I’d seen him before, the last time I was in the Emergency Room. I was having heart palpitations over the stress of navigating the cabin build, and I had breasts. And hair. I don’t care if his “memory” was helped by reviewing my chart; I certainly remembered him as a very capable professional and told Bob he could leave to take the pets home with the assurance I’d be in good hands while he was gone. No need to rush back.

After we got the results of initial tests in the ER, I was admitted to the hospital Sunday evening. Monday was dedicated to lots more tests, and the surgical removal of my port in my chest. My port got infected by opportunist bacteria that was likely already living on my skin, that sprang into action when it saw a literal opening. And since my immune system was compromised from the chemo, my body wasn’t able to fight it, even with the help of the antibiotics I got in Fergus Wednesday night.

It was an exhausting day after an uncomfortable night, and I was feeling pretty shitty throughout. I was excited to get settled for bed Monday night. I got up to use the bathroom in the middle of the night, and was horrified by what I saw in the mirror: there was a giant hole in my chest and my guts were leaking out.

I nearly passed out as I realized what had happened: as I was going to sleep, I alerted my nurse that my surgery site was itching, but since it wasn’t turning red, we decided it was probably okay. I then clawed it open while I slept. Turns out they pack those wounds with fabric tape treated with an anti-bacterial agent. The tape was poked way up into the channel where the port had gone up through my chest. When I tore it open, I ripped much of the tape out while some was still attached. It was soaked with blood and looked like guts; I admit, more like a section of Raggedy Andy’s bowel than anything that would make sense springing from my chest, but I really wasn’t expecting it and it really was shocking.

Today the prediction for discharge is Friday. It’s a moving target.

Bob Writing the update for February 18, 2019

Quick update on Kate. My plan is to keep this brief so Kate can write a more comprehensive update tomorrow, when I expect she’ll be feeling better and finding herself with time on her hands. From the hospital. Which is where she is now (and will likely be until Thursday) with a blood infection.

The sequence of events was as follows: Following an avalanche of new/worsening symptoms on Sunday (dizziness, headache, chills, shallow cough, pain when breathing, light sensitivity, stiff neck, and others) we drove back from the cabin and straight to the emergency room. To rule out meningitis, they did a spinäl täp (the rockingest of procedures), which came back negative, but Kate’s white cell count was elevated (4 times higher than normal), and they admitted her and started her on heavy antibiotics. (Side note: the emergency room doctor was the same Dr. McDreamy who treated Kate for heart palpitations a few years back and who had been a contestant on Survivor. Kate wondered aloud if maybe I should leave the room so he could do a more “thorough” examination). Today they did a bunch more tests, confirmed the infection, removed the chemo port (which may have been the source of the infection), and are continuing the antibiotics. And now we wait.

Kate had some discomfort last night and didn’t get a lot of sleep, but was somewhat better this afternoon, and seemed almost perky tonight (though as I’m writing this, her fever is back up a bit – it’s an adventure). This evening, she expressed disappointment in me for not posting this sooner (her fans need to know!), so perhaps things are getting back to normal.

Kate is now resting comfortably. I’ll post additional updates as they arise, and expect Kate will have more to say about this tomorrow.

February 15, 2019

I wouldn’t say it’s going great. On Wednesday, I had some swelling and discomfort up my neck where the port catheter runs.

Since I’d been running a low-grade fever and was having pain, the nurse on the phone said we needed to check for infection or blood clots. This sent me into a panic attack; my mother was hospitalized last week for blood clots. Bob has basically become a life-size Pez dispenser that shoots out Ativan and Zofran. We headed in to the Fergus Falls Emergency Department. It’s about a half-hour drive, maybe less. We got there a bit before 8 p.m.

It took four hours to find a vein through which they could inject contrast dye for the CT scan of my chest and neck. Since I had lymph nodes removed from my left armpit, my left arm is not to be used for needle pokes and blood pressure monitoring, basically, forever. I might as well not even have it. Four different people had a go, and the anesthesiologist they called in was finally successful.

We’d be there another four hours, waiting for the after-hours service to read the images, and waiting for the okay on treatment from my oncology team in Minneapolis (slow going at 2 a.m.). We hadn’t eaten dinner before heading to the ER, not realizing how long we’d be there. Bob took all the dollars I had out of my wallet for the vending machine, but I was gone so long for the needle pokes that he ate everything but basically four almonds. He could have put the wrappers in the garbage so I didn’t have to think about what, specifically, I didn’t eat. The results of the tests were that I have cellulitis, and was prescribed an antibiotic.

My internal thermostat is messed up. One minute I’m sweltering, soaking the bedsheets top and bottom; the next, freezing and shivering. It’s hard to parse out what might be chemo-related, versus fighting this infection, versus menopause (have my ovaries even received the memo? They’re probably mad that their party is ending early). The secret to temperature modulation seems to be in my throat: if I’m shivering, a few sips of hot water will stop it. I really wish I would have figured this out sooner than I did.

As my doctor predicted, today is hair exodus. Two weeks after chemo started. It comes out easily, like picking grass, but not all of it; I’ll have Bob shave it off tonight. I shaved my grandmother’s head when she started losing her hair from chemo. That seemed more momentous. Her hair was fancy; beautifully platinum, it took tons of time to fix up, with curlers and one of those helmet hairdryers. She had a special pillowcase to keep it looking good as long as possible. Silk, so her hair would slide and not get mashed.

When I’m well I can entertain myself for hours and hours, just thinking about things. I’m a world-class idler. When I’m acutely sick, the doorways to those places are closed. It makes the discomfort interminable. And I can’t be convinced that I will, probably, feel better eventually.

Current mood: balding and sweaty. And a shot of today's harvest (haven't shaved my head yet).

February 12, 2019

We’ve relocated to Recovery Lair North. We had a small window of opportunity between snowstorms and grabbed it.

That was Saturday. It’s now Tuesday. Chemo day 12. Concepts of time have become ambiguous. It might be from the small amounts of pot I vape throughout the day. Maybe. I had planned to carefully document the endless flux of chemo side effects, day by day. My response to future infusions will match this one -- or gradually get worse as the poison builds up in my body. I know that days 4, 5 and 6 are a beast and will warrant narcotics or horse tranquilizers or whatever I can get ahold of. It does get better after that, but it’s never good. We’re now cycling through some of last week’s greatest hits, but with less intensity. The muscle/bone/joint jolts are back, but they move through quickly, like sparks. My thrush is clearing up. I have insomnia. I need naps. I was running a low-grade fever yesterday; I’m still struggling with my port bandage adhesive reaction. My fingernails and teeth are sensitive and achy. My eyes feel too big for their sockets. My skin is thin and prone to breaks. My heart is just so close to the surface.

“Hair falls out” is penciled in for Friday, chemo day 15. I got an industrial hair catcher for my shower so I won’t plug the plumbing. Today Bob gave me a punk rock haircut, shaving half my head, because why not. It highlights my craniotomy scar nicely.

I’m being more deliberate with medical marijuana use on the advice of my medical team, in an effort to more consistently reduce gastric distress. It conveniently also reduces generalized distress. It tastes nasty and makes me cough, still.

It is gorgeous here at the cabin. We have a ton of snow, the bird feeders are filled and the fire is cozy. It’s also dry as shit, necessitating a trip into town to get a humidifier. Walking into Walmart, Bob was conflicted between morality and tremendous savings. So much value!

February 9, 2019

Headrests are very handy for dozing in the car…

February 8, 2019

I’m being treated for oral thrush. That’s the news from chemo land.

The Star Tribune sends me some story highlights each day. Today, it ended with “Honey badger rescues her baby from hungry leopard” under the heading Watch This. So I watched. I love a good underdog story. Or under-honey badger. The video starts with a leopard chewing (not graphically) on an animal that looks sort of like a skunk, black and white. It wasn’t a tiny baby. I’d call it a juvenile honey badger. All of a sudden, a larger honey badger roars in and goes after the leopard. There’s some chaos and then the leopard retreats to the top of a hill.

Momma honey badger saves the day! Only she didn’t. Baby honey badger is absolutely not okay in the video (not graphically). He was chewed by a leopard, for god’s sake. I thought it was going to be an uplifting story of conquering insurmountable odds, but the momma honey badger was too late. Seriously, did anyone at the Strib watch to the end before posting the link? What the fuck.

February 6, 2019 Part Two

For some reason I have an interest in reporting on the experience of having cancer. I think it's mostly because cancer is all around us, and so much of what I'm going through is a total surprise, which it shouldn't be. I think we should have a better collective understanding of some of these things. Maybe if we did, we might work a bit harder to mitigate the causes. Or something.

I also rely on, and like to give, honest product reviews. I keep sending around the tome I wrote about mail-order mattresses. If someone else can benefit from my research and experience, that's great. Many friends have given me a multitude of cancer pointers, and they're invaluable. Consider these months of posts my long-form review of cancer. Tl;dr: Sucks.

Of course, every experience will vary. I'm very aware that I am on this ride from a position of extreme privilege; I have excellent health insurance and I'm not worried about going broke because of cancer. I have a super-awesome, handsome partner in Bob who has attended all of my appointments with me, takes care of me, and puts cold wash cloths on my head when I need to spend time lounging on the bathroom floor in the middle of the night, even when those experiences are terrifying to him. I have not one, but two beautiful homes to recover in. In Minneapolis, I have the ability to have anything I desire delivered to my door. At the cabin, my dad shuttles supplies as needed from town (it's harder to get decent -- or any -- pho up there, though). Everywhere, I have the love and support of so, so, so many amazing friends and family.

I feel like I'm at the cabin. It's summer time, dusk. The bugs are just starting to come out. I light a bonfire, which helps with the bugs. I put on some bug spray. This helps a little, but eventually, it's not helping enough and it's time to go in.

But this is CANCER, and I can't go in. I have to withstand the bugs, because I don't really have options (I do have the cabin as a fabulous consolation prize, even with the cancer and the bugs. Worth it.). Looking back, parts of being attacked by bugs weren't that bad, but there was always a thread of "What the fuck kind of apocalyptic hell show is even happening right now?" And I'm unsure which is supposed to be worse at this point, swarms of biting insects or cancer.

Keep in mind that I'm on the easy road, comparatively. I'm expected to live through this. My chemo is on the very lightest end of the spectrum. This is what easy cancer looks like.

Thanks so incredibly much for offers to help. I appreciate them immensely. It's a constantly shifting field, and I have access to so much stuff; knowing you're out there, following along and sending positive thoughts adds to the good karma bank that we all need. It's SO HUGE. It's all of you that distract me from the latest bullshit on this path. I appreciate it more than you can ever know.

February 6, 2019

I've never been a fan of fitness classes that encourage "Just ten more!" and then we get through the ten and they move the goalposts. "Five more!" I don't like working out regardless, but find the bait and switch particularly loathsome.

This is how I'm experiencing chemo. It's not so much a bait and switch, I guess, as unpredictability. Everyone knows that chemo sucks. I expected it to suck. But I made myself believe it would just be a fly in the ointment, a temporary, irritating but manageable inconvenience. I expected one bad day.

Turns out there are more bad days. They're not acutely bad, go to the hospital bad. But they are "call the nurse line" bad. The symptoms are a bit outside anything I've experienced before, and there are a lot of them. Even so, I believe I'm on an upswing from Monday's crash.

This is what a relatively good day looks like: my teeth hurt, my tongue is swollen with small sores springing up along my tooth line, my eyes feel puffy and I'm sensitive to light, I have waves of gastric cramping, surprise nausea (I'm not surprised I have it, I'm surprised that I can feel fine and then be nauseous in a snap). My sinuses are parched and bleeding, I have ringing in my ears, my throat feels like I have strep (I could actually have strep). I have a muscle twitch above my left eye.

My port site is freaking out and itches. There's a raised, angry red reactive rash perfectly outlining the site of the bandage used to keep the infusion needle attached to my port. It seems crazy that one of my problems is a reaction to a band-aid. Band-aids are supposed to do good. The band-aid was removed immediately when it started itching, but the reaction to the residue continues to grow.

My body hurts all over, but the rolling, electric muscle/joint/bone spasms are getting better, which is awesome. Except for my hands, which ache most of the time. My head cold is better. I'm more mobile; I napped in four different places in our house today! The Recovery Lair (spare bedroom) is back in business. I have excellent care, between Bob bringing me food and Abbie not leaving my side (luckily, he's totally game for naps).

I have lots of drugs. I have four different anti-nausea prescriptions alone, but I don't understand the right times to utilize which drug. I have hoarded narcotics, medical marijuana, lots of other things. None of it removes all of the discomfort. But I'm happy it's not as bad as it was, while knowing it will get bad again. It's all bullshit.

February 5, 2019

Days one through three of my first chemo round were great. Absolutely no problem. I felt maybe even better than normal. I have steroids to thank for that, and they abandoned me Sunday evening. I now have waves of deep bone/tissue/joint pain throughout my whole body that either pass quickly or lock on. There's an electrical quality to the bolts of pain. Sunday we took an extra long walk; Monday I could hardly make it up the stairs.

I worried yesterday that I wasn't experiencing the worst of it and the worst was yet to come, but I'm happy to report that today was better. I'm hoping that I'm now on an improving trajectory until my next infusion on February 22.

The sensation is odd. I'm a marionette, and my joints are a bit loose and hard to control. Had a fun middle-of-the-night panic attack last night, followed by a long respite on the bathroom floor, dissolving Ativan under my tongue and grounding myself on the soothing cool porcelain as Bob put damp washcloths on my neck.

I had a head cold bloom yesterday, my tongue is swollen, and it's hard to get comfortable. Calls (plural) to the oncology nurse triage line confirmed all of this is in the realm of normal. They suggested Claritin (the allergy tablet) and Tylenol for the muscle jolts and Benadryl for the swollen tongue. They encouraged experimenting with medical marijuana. It will apparently take a few days for the Claritin to fully kick in, so I'm bridging with my leftover Norco from my surgery -- because chemo is more uncomfortable than recovering from a double mastectomy.

February 3, 2019

First chemo, so far…so good!

I get two drugs during my infusions. They each take about an hour. The first is Taxotere, which seems to be the stronger of the two, and Viv, my chemo nurse, stayed in the room for the first fifteen minutes of the infusion in case I had an adverse reaction. The poison was engaged, and I became a watched pot. As it hit my body, I sort of expected my hair to drop like our maple leaves after a hard freeze, but nothing happened.

“Don’t worry, you can sit on Bobby’s lap. The first shot relaxes you, the second paralyses you, and the third stops your heart.” Bob’s two New York cats were both euthanized at home, and our vet went over the procedure each time. Now any time Bob is with me while I’m receiving an injection, he says, in a soothing voice, “Don’t worry…”

The second drug, Cytoxan, was also easy. It gave me a tickle in my nose, a pre-sneeze, which was a sign Viv needed to slow the flow. My face was burning a bit, like I was trying a new sunscreen that irritated my skin slightly. Totally minor, and it didn’t last long.

And as far as all of the tips and tricks, I skipped them. No cold cap for my head, no ice in my mouth, no cold packs on my hands or feet. I drank a bunch of water, some hot tea, a bottle of kombucha, and ate lunch from the hot bar at the Wedge. Bob worked on his laptop. Uneventful.

Which is how it has continued. I’ve developed my own chemo regimen. Drinking lots and lots of water, frequent hand washing, shots of Fire Tonic to boost immunity (with special thanks to Robin Gillette), dry brushing to stimulate lymphatic flow, sauna to detox, walks. I’m ready with salt and baking soda to put in a mouth wash to ward off mouth sores, augmented with Biotene and peppermint oil.

After the steroids they gave me before the infusion on Friday, I was up until 6 a.m., but slept normal hours last night. Today, Sunday, I’ve taken no anti-nausea medication. I feel absolutely fine, except for the Red Wedding reenactment happening in my reproductive tract. I had an IUD installed a few years ago because of heavy periods, and the localized hormones it emitted eliminated periods entirely. My oncologist advised getting rid of it because of those hormones. Now we’re making up for lost time, I guess. And chemo will throw me into menopause, so my uterus going to party like it’s 1999 -- before everything shrivels up.