February 1, 2019

Chemo day 1 was blissfully uneventful. We spent a couple hours getting settled, drawing blood for labs, watching a video on chemo, and then walking through the "Cancer: Try Not to Die" handbook with Viv, my chemo nurse.

I had a slight reaction to the bandage Viv put on my port to keep the needle in place; I'd reach up to scratch at it and Viv would unapologetically slap my hand away. She changed it for a different kind, and everything was fine. Viv put on a Hazmat suit (not really, but almost) to hook up the poison. I couldn't tolerate the bandage adhesive, but the poison infusion was no problem. I thought my hands were going numb at one point, but I was pushing my elbows into the chair too hard.

I'm well armed with various anti-nausea medications. So I guess now I just carry on. Viv says the steroid they gave me will give me a false sense of pep, and the tiredness will set in once the steroid wears off. Bob "inquired on my behalf" about whether Dr. Trottier ever prescribes, oh, I don't know, say, Adderall to help with the tiredness. Turns out there's more research on using Ritalin, and Bob seemed to think that would work. For me. The patient. Dr. Trottier advised just seeing how everything goes before taking that route.

If forced to come up with physical evidence that I'd been poisoned today, I'd say my mouth has a bit of a metallic taste? But that's about it. Maybe bleeding from the eyes starts tomorrow.

kate chemo 1.jpg

January 31, 2019

Port placement yesterday went fine -- super easy, in the scheme of things. Nice drugs, nice people, A++. Highly recommended.

The port is a thick metal disc the size of about a quarter but more like 1/2 inch thick, with a flexible, 6-inch narrow tube coming out the side. The top of the disc is squishy. It's placed under my skin on my chest, just below my collarbone. The tube is fed into a vein, where it lives until it's removed, after I finish all my chemo in a couple months. To get blood or give drugs, a needle will be poked through my skin, into the squishy part on the top of the port. I'll report back on how this works in practice. How does the needle stay in there? Why did I agree to this without knowing how it works? I mean, I remember taking the vote on Facebook, which is how all medical decisions should be handled, but...

It was double digits below zero when it was time to go get the port, and Bob announced that neither car would start, so he'd ordered a Lyft. When it arrived, I couldn't help but notice that the snow was undisturbed on our primary car -- Bob hadn't actually opened the door and tried to start it, but stood some distance away (inside the house? In the bathroom?) and attempted a remote start. I had the whole ride to the hospital and an hour of pre-op to be irritated about that. When I was finally wheeled away, I told Bob that if I didn't make it, he should know I was disappointed. He responded "Buh-bye!"

Somehow I was able to hang on to this through the glorious fentanyl. I tried and succeeded in starting the car the moment we got home.

We had some frozen pipes that are now un-frozen, so that's great. And I start chemo tomorrow! I'm really doing fine. It's like planning for a flight to Bangkok. I know it will suck at times, I will be irritable, it will seemingly last forever, but I'll have snacks, comfortable pants, stuff to read, drugs, and nice ladies will be helping me. And of course Bob will be there, too, because he just can't get enough of his crabby wife. And, like a trip to Asia, I imagine in the coming weeks I'll feel sort of jet lagged, tired, and maybe experience gut issues. But on a real trip to Asia, my happiness at the destination more than makes up for the drawbacks of the trip. Not so much here. It's hard to generate excitement for simply staying alive when it's all I've ever known.

I show up at the cancer center just after noon tomorrow. There's approximately an hour's worth of labs and meeting with my oncologist, then the infusions start. They will take about an hour each (there are two). The whole thing will take about three hours. I'll be in my own little room, which looks sort of like a hospital room, but with a recliner instead of a bed. (I got to see the rooms before.) I'll be given steroids and anti-nausea medications to help mitigate side effects.

Friends who have gone through chemo have passed along tips. It seems that the poison isn't readily taken in to tissue that is cold -- which is why some people wear cold caps to prevent hair loss. My oncologist wasn't excited about those, and I didn't pursue it because I'm bald-curious. But I think I will keep ice in my mouth to prevent mouth sores. Still deciding on holding ice packs in my hands to prevent neuropathy (loss of sensation/tingling).

I can bring snacks, and there are no eating or drinking restrictions prior to the infusion, I don't think; I need to actually look through the large binder I was given called "Cancer: Try Not to Die." (It's not called that, but "Your Care Guide" is boring.)

I want to bring good snacks that I'm excited about, but I've also been cautioned to avoid my favorite things, because if I get sick, I might not ever enjoy them again. Second string snacks are what I'm aiming for. Hummus-level snacks.

I think I'm ready. Well, we have to get the snacks on the way. (Now that we know the fucking car starts.) I worry a bit that the drugs will change the way my mind works. Losing words and feeling fuzzy are normal chemo side effects. But what if I change, and it's noticeable? What if I become nicer, but dull? What if I become too weird even for you weirdos? What does it feel like to be poisoned, on purpose? What's poison-induced menopause like? Guess we'll find out...

January 27, 2019

We go to Las Vegas about every three months to see Bob’s dad, and we always stay at the Delano in Mandalay Bay. The Pai Gow tables are close to the bar and lounge, where most nights the house classic rock cover band is playing. They’re good, and Bob always wants to stop and watch the band for a few minutes as we’re heading back to our room. There’s a guy on the dance floor every song – of every night I’ve watched the band. He sort of sticks out because he’s unlikely – a bald, elderly gentleman with his own particularly unique dance style, rocking out. Sometimes he’s the only one dancing, but usually there are others on the floor, and often younger women dance with him. He’s got a good thing going.

He’s become a touchpoint for me – it’s not a trip to Vegas until I see my dancing man. He’s inspiring – the band doesn’t even start until 10 pm. I’m a night person, and still head to bed before he’s done dancing. Amazing.

We’re in Vegas now, getting in a visit before I start chemo on Friday and am grounded for a while. It’s been three months since our last visit. Three months ago, all I knew is that I needed to go back in for a breast biopsy. The diagnosis, the panic, my 50th birthday, the surgery, the recovery, the holidays, finding out I need chemo – none of that had happened when we were here last.

I am counting down the days until chemo, and while I’m a bit freaked out at how fast it’s coming up, I’m not stressed in the same way I was leading up to surgery. I struggle a bit with how strange it is to be perfectly, totally, 100 percent healthy and fine (and technically, cancer free at the moment), and still sign up to go in and have poison poured into my body. Yes, please. Let’s do the poison and hope for the best. There’s more than a little “Thank you, Ma’am, may I have another” fraternity hazing feel to this bullshit.

Bring it. I’m ready. I made a deal with myself that when I came to Vegas and saw my dancing man, that would be the sign that everything would go fine with the chemo. It would be an easy benchmark to hit, because he’s there all the time, but still, that would be my sign.

And then he wasn’t there. There was a funk band both Friday and Saturday nights. My dancing man is a classic rock guy. I looked for him, but he wasn’t there. It was the wrong band.

I got a little panicky. I tried to make up for it. If I touched the smooth stone lining the hall into the hotel, every single time…but I didn’t start that from the beginning, and I’d already missed a few times. At the Pai Gow table last night, we were on a losing streak until two friends sat down, who were both named Jason. The tide changed, and we ended the night ahead. Then today when the relief dealer was wearing a name tag that said “Jason” I decided THAT was my sign, the three Jasons. I still didn’t feel too confident that these things would all make up for missing my dancing man.

I told Bob the bet I’d made with myself, and he asked why I’d do that. He doesn’t know that I’m making bets all the time, taking good omens in the number patterns on the odometer, the gas meter, the clock, three strangers named Jason. But you can’t just change the rules and expect the luck to work. I tried to convince myself that chemo would be okay. My bets are meaningless and stupid, and won’t change a thing.

I almost started openly weeping at the Pai Gow table tonight when I heard rock pulsing from the lounge. Oh my god, it’s the band. The band is back.

And so is my dancing man. Chemo will be fine.

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January 13, 2019

As predicted, my surgeon checked me out and cut me loose on Friday. He said my surgical site looks much better than he thought it would. “Better than expected” is always good to hear. My left side looks great, and the right is still a bit lumpy. I asked if that would eventually smooth out, too, to which he answered, “Probably?” The other side was equally lumpy at one time, and that resolved, so I’m going to apply my vast medical experience, be more definitive and say, yes, it will. Since he was so impressed with how it turned out, I asked if he’d like before and after photos to hang in his office.

Let’s talk about marijuana. In Minnesota, people with one of a list of specific medical conditions can get a referral from their doctor to get on the registry to buy medical marijuana from licensed dispensaries. Bob’s doctor, trying to steer Bob away from a Vicodin addiction, encouraged him to explore pot to help with his chronic neck pain, so he’s been able to access the dispensaries for a while now. A doctor refers you, you pay $200, then you get to buy medical marijuana from a licensed dispensary in vaporizer pipes, as a topical salve, or in capsules. The pot comes in many formulations with differing levels of THC (what makes you high but also relieves pain) and CBD (which has anti-inflammatory and anti-anxiety properties).

Cancer is one of the qualifying conditions for medical marijuana. I argue that “Trump presidency” should also be a qualifying condition. My oncologist has referred me to the registry.

I heard a story once about someone who was too cheap to pay her own $200 registration fee, and just used stuff her husband bought. Rumor has it she had sampled the goods long before she ever had cancer, even, which is illegal and wrong. I heard that she’s a scofflaw, and also believes that as a middle-aged white woman, her chances of being arrested on a misuse of medical marijuana charge are very, very slim. But apparently she has become even more emboldened now that she can point to her name being legitimately on a list, even if she hasn’t paid the $200 to complete the registration.

She sounds like bad news. Don’t do drugs!

Moving on to my IUD. Prescribed to me to help with torrential periods, it emits a low level of localized hormones and ultimately makes periods stop. Which is why I’m not sure if I’m menopausal or not. But good news! If I’m not, the chemo will throw me into menopause, so I can enjoy hot flashes and other menopausal symptoms alongside the chemo side effects! To be on the safe side, since my cancer likes some of the hormones the IUD releases, my oncologist said it had to go.

I had such good luck removing my surgical drain by myself, that I thought JUST KIDDING!! I did think about it, but only for like a second. I went so far as to google it, but the first article that came up was a female doctor listing all the reasons she, as a doctor, wasn’t going to try this at home. The message was clearly “Don’t be a fucking idiot, even if you did just boil the needle-nose pliers.” I left it to the real medical professionals.

January 12, 2019

When checking in to see my oncologist, the receptionist asked if I’d been out of the country in the past three weeks. YES! I finally got to answer yes. I was in the Bahamas. On a cruise for my mother-in-law’s 80th birthday. The receptionist said she threw a big party for her dad’s 80th, but they realized she’d been off a year on the date, so she threw another 80th birthday for him the next year. None of the guests seemed to notice.

My oncologist appointment was spent talking about chemo. My oncotype number is 30. Chemo is indicated for numbers 26 and above. I’m doing TC Chemo, which stands for Taxotere and Cytoxan, two different drugs that will be administered one after the other through a port I’ll have installed in my chest (the only thing I remember about the port installation discussion is something about Versed and Fentanyl, so I’m looking forward to it). One infusion every three weeks, four cycles total. Side effects could include: alopecia (hair loss), nausea, vomiting (though I’ll receive meds to mitigate), mouth sores, taste changes, infection, fatigue, bleeding, neuropathy, second breast cancer. Dr. Trottier wrote these down in a list.

I have to do chemo because if I don’t, there’s a 19% chance the cancer could come back. Or maybe it’s 19% even if I do the chemo. There’s a more than 15% benefit to doing the chemo, or something, and the only thing that struck me about these numbers is that even after doing all of the surgery and the poison and the hormones, I still have a not zero chance of the cancer coming back. I want there to be a 0.013% of recurrence. Bob points out that a 19% chance of recurrence is an 81% chance of being cancer free. Yes, but…I wish I could find more comfort in the >15% chemo benefit, or even fully understand what this means. I want a chart that says “Do all this bullshit and then you will not die from this cancer. Money back guarantee.”

I whimpered about all this a bit, and Dr. Trottier said, and I quote, “I’m picking up what you’re putting down.” I hear you, but this is all we’ve got. He said if I make it nine years without recurrence, I’m probably home free.

But who the fuck knows. No one, that’s who.

We got pedicures in Miami before the cruise, and as I was picking out my toenail polish color, I thought, this will be my chemo color. Bob said, “Well, not if your toenails fall out.”

Good point. Like when he pondered, “Since your hair is turning gray, when it all falls out, it will probably be totally gray when it grows back.” Oh! Right! How about fuck you.

When we were negotiating with my family about building the cabin, one big question was what would happen if Bob and I received title to the lot, took a huge building loan, and then were unable to pay the loan. The fear being that it would have to be sold, meaning there would be a stranger living on the property. Possibly throwing non-stop loud parties or God knows what, but definitely affecting the quality of life of everyone else out there, forevermore.

There was one family meeting wherein my family members wanted to know what the cabin contingency plan would be in various scenarios, which they helpfully listed.

What if Bob leaves you and moves back to New York?
What if all of your clients fire you and you have no way to make money?
What if your latent brain aneurysm ruptures and kills you?

I pointed out that somehow (miraculously, it would seem), I had managed to remain financially solvent during my entire adult life. In the event of my death, I would no longer have a stake in or give a shit about what would happen. And that I was hereby calling for a moratorium on discussion of scenarios featuring my abandonment, destitution or demise. We would all have to take a leap of faith based on my track record, and proceed.

I talked them into it. Bob and I got a loan, built the cabin, and then I got cancer! Hahahahahahahaha, oh god. Of course, no one has brought it up. The cabin, that is, in relation to my new situation. I look forward to spending lots of time there in between chemo infusions, and have the best intentions of living long enough to pay it off. The odds of that do seem to be in my favor.

January 10, 2019

One of the days on the cruise ship we docked in Nassau, the Bahamas. Our enormous boat pulled up to an enormous pier and we walked off to do some duty-free shopping. There’s a strip of shops very close to the pier where it turns out one can save maybe a couple hundred bucks on the two-thousand-dollar watch you’ve been eying. Or, you can get a keychain that says “The Bahamas.” There are fancy, crazy expensive shops mixed with cheap souvenir stores along the shopping street. I was walking with purpose to the store selling bamboo sheets, so missed the interaction where Bob’s mom Jane was given a moisturizer sample and the salesman applied a skin tightener under one eye. They caught up to me and were waiting outside the sheet store as I talked myself out of buying these particular (expensive) sheets. On the sidewalk, Jane pulled off her sunglasses and asked if we noticed a difference between her two eyes.

Holy shit, it was incredible. I’m not kidding, the difference was amazing. We were celebrating Jane’s 80th birthday, but she’s beautiful, she looks terrific and not a day over sixty at her worst. This magical serum had further turned back time. Bob, the eternal skeptic, was so impressed he thought we should return to the cosmetics store immediately to learn more about this voodoo juice.

The gorgeous, bronzed Israeli salesman, Isaac or Izak or Itzak or it doesn’t matter demonstrated the application of the skin tightener to Jane’s other eye, and we all watched with amazement as the wrinkles disappeared.

He turned his attention to me. “Would you like to try it? Not like you need it. You are, I would guess, 32?” Well, hello, Isaac. If you want me to be 32, I’m 32. I sat down in the salon chair so he could make meaningful eye contact as he smeared some liquid under my eye.

“That is your husband?” he asked, nodding toward Bob, who was scrolling through his phone. “Him?” I responded. “I guess.”

I could feel the area under my eye getting tight. I was handed a mirror and Bob was called over.

“Oh my god. Your eye isn’t puffy any more,” Bob said. Genuine amazement.

One bottle of this youth fountain regularly sells for $750. That’s fucking ridiculous, but Jesus, look at the results. It almost seemed worth it. The price quickly came down to much fewer hundreds, with a second bottle thrown in. As someone who is pretty confident about her skin BUT just had her breasts removed, this was sounding reasonable. Jane and I could split the order. The fact that Bob was entirely on board was, frankly, shocking. He gallantly decided to gift one bottle to his mother, and, well, for his beautiful wife, no price too great. With this treatment, he could pretend I was in my 20s or 30s. Okay, early-to-mid 40s. Winners all around.

Now that we’d tipped our sucker hand, Isaac served us champagne and called out their special technician to show Jane some of their other products. I still had the treatment on only one eye, so I was half mid-40s (maybe younger) and half puffy stroke face. Bob and his brother wandered off, and I watched as a new potion was applied to half of Jane’s face. What the new, less hot and less charming technician was selling was an infrared wand and set of three products that were guaranteed to take 10 years off, maybe 20, all for the incredible price of seven fucking thousand, five hundred dollars. Yeah, sure. That’s not happening.

When I started glancing around the store to see where hot Isaac went, the mean new guy asked why I wasn’t paying attention. I said I wanted to have my other eye treated, so I maybe didn’t look like I had a blood clot in my brain. He said he’d do it, when he was done with Jane. But I wanted Isaac to do it!!

The presentation was starting to fall apart, and he was doing the hard sell, to the point of making Jane feel bad about not taking advantage of this amazing offer, even when he was able to text his manager and get the price down to a measly $2,500. This whole time, he’s left a white skin cream covering half of Jane’s face, ensuring she wouldn’t just walk out. Amazing sales tactic. I started thinking I’d need to create a diversion, so Bob and his brother Mike could swoop in and rescue Jane and we could get back on the huge boat.

Eventually he finished up, and we left with our overpriced but apparently effective skin tightening serums we bought at the beginning. I believe a key ingredient is Super Glue. I have very sensitive skin, and I was a happily surprised to wake up the next day with my eyeballs still in my head and vision intact.

Jane called yesterday to ask if I’d tried the bottle I brought home. Not yet. She tried hers, and thinks we were scammed. (No!) She doesn’t think it is the same product we sampled in the store. It still seems to do something, but just doesn’t feel the same. I think it’s probably just more effective when a hottie foreigner is applying it, rubbing his hands on my face, staring deep into my eyes. Were we hoodwinked? Maybe. Was it worth it? Probably.

January 9, 2019

I really assumed I’d look like Tig Notaro after my surgery, but with my belly, I look like a 65-year-old man with poor upper body strength and blobfish in his armpits.

 I don’t miss my breasts at all. I still have occasional phantom itchy nipples. The overall tightness is getting better. I knew my recovery was officially over when Bob told me to get out and push the car when we got hung up in new snow at the cabin.

 I’m more interested in accentuating my newly flat chest (as someone who has never had a flat anything) than hiding it. On the cruise for Bob’s mom’s birthday, I was faced with my first swimsuit situation. I have a swimsuit top that has those molded cups; on my body, it made me look like I had small, but collapsible, breasts. I didn’t end up wearing it. I also have a sun-protection shirt made out of swimsuit material – it’s a short-sleeved, zip up t-shirt, basically. When I modeled it for Bob before the trip and asked him how I looked, he scrunched up his face and said it looked like I was wearing a scuba suit. Okay, but does my body look freakishly deformed? That’s the question.

My whole shape is different than what I was expecting, but it’s not bad. I now spend a fair amount of time imagining I’m a fashion designer for women who have had a double mastectomy and aren’t trying to hide it. Then I remember that I can’t sew. Or draw.  

The clothing considerations all changed. I no longer need to worry about covering bra straps, or making alternate support decisions. I’ve always looked for clothes that accentuate my waist but skim over my midsection; this is still an issue. Pretty, nicely cut, comfortable, machine washable…how hard can it be?

I am entirely at home in my own skin, with breasts and now without. As a life-long fat girl, I come to this by sheer force of will and brute strength. It hasn’t been easy. When you’re big, people assume you’ll forget, and they need to remind you. My nickname in grade school was “Ox.” In high school, I remember walking past a bar in the heyday of the Detroit Lakes, Minnesota Fourth of July super-party and meat market, while a hot guy called out to me, “You’re kinda cute for a fat chick!” And just a few weeks ago, I was wondering to my dad how the fat in the areas surrounding my breasts would transition to my newly fatless chest. Some sort of fat fade? And he asked if I would have done anything differently, had I known this would one day be my fate. How, I wondered? Maybe skipped several hundred desserts, or actually exercised? Stayed skinny, if miserable, so that in the event I’d need to chop off my boobs, my view wouldn’t feature a nice round tummy?

I had to decide, a very long time ago, that I was going to be happy the way I was. Because constantly feeling bad about yourself is fucked. Totally, completely fucked. It’s simple: I like being happy. I like enjoying my life. These things are not compatible with constantly working toward an arbitrary standard for how I should look. How I should be.

I’m a conscientious objector. I won’t wear nylons, or uncomfortable shoes. I don’t spend time styling my hair, I don’t wear makeup. I don’t iron, or tuck in my shirts, or skip dessert. I live the way I’m happiest.

I love the night. I love staying up late. It’s a running sport in my family to make jokes about how late I sleep. Even my eight-year-old niece knows the drill. We might talk about meeting for lunch, and she’ll pipe in “or breakfast, if you’re Bob and Kate.”

Sure, I have moments when my resolve quivers, and insecurity starts creeping in. But since insecurity is actually the worst, most debilitating, soul crushing, deflating, horrific feeling in the whole entire world, I won’t do it. Fuck no. Fuck that. I don’t have to. Insecurity is not required, and it’s almost impossible to recover from. Blech, get it off me. No.

This is not to say I’m not vain. I’ve spent a small fortune on face creams and sunscreen in my lifetime. The results speak for themselves. And I feel fantastic. Going gluten free has made a stunning difference. So much so that I’m not even tempted to eat it. And gluten was my favorite food group, by far. I’m titless, in a few weeks I’ll be bald, and I don’t care. I really don’t. I’ll look badass, with my craniotomy scar and everything. I’m great. I wouldn’t have changed a goddamn thing.

January 7, 2019

We’re back from the first big excursion post-surgery. Bob and I flew into Miami, had a lovely Colombian dinner, and then got on our first big commercial cruise ship for a 3-night sail to the Bahamas, celebrating Bob’s mom’s 80th birthday.

I haven’t been on a plane for more than two months, and it’s amazing how fast my travel skills deteriorated. Friday morning, in the hotel in Miami, I went to take a shower and Bob was surprised to come into the bathroom fifteen minutes later to find me standing in the corner of the shower, water running, yet still dry. Waiting for the water to warm up. I felt like we were getting close, and it was about to be warm. I finally got out of the shower and made Bob call down to the front desk. A service guy was sent up, he adjusted a dial that I didn’t realize was a dial, and steaming hot water emerged immediately. If I knew how to be apologetic and say “I’m a fucking idiot” in Spanish, I could have used it then.

When we boarded the cruise ship, we were issued our “SeaPass” cards that serve as our IDs, charge cards and room keys. I read in the promotional material that for the first day only, we all had a $2 credit on our SeaPass cards that we could use to play the slot machines in the casino. Two whole free dollars! The opportunity to win tens of dollars, if not millions! I picked a machine and fed my card into the slot. As the card disappeared, I realized I’d poked my card into a random opening on the slot machine, and it wasn’t coming back out. I was eventually able to locate a confused technician to open up the machine and retrieve my card. Another shining moment.

I’m feeling good, six weeks after bilateral mastectomy. A couple weeks after the surgery, my chest developed some weird deep folds and ridges around my armpits. They weren’t squishy, like fat rolls, but oddly hard. My armpits looked like blobfish. Or a Shar-Pei. The left side has now smoothed out, the right is still lumpy, but getting better. Not having drains is SO GREAT, but my sides are still tender. If I roll onto either side while I’m sleeping, the pain will eventually wake me up. The area just feels quite bruised. Like all of it, that’s also getting better with time.

My mom is recovering nicely from a successful lumpectomy last Friday. I will get my chemo schedule when I see my oncologist on Thursday. I have an appointment with my surgeon this Friday, and I assume he’ll admire his handiwork one last time and tell me to have a nice life. His job will be officially over, and I will advance to the next level.

December 30, 2018

I decided today was the last day of my armpit drain. I have an appointment to have it removed on Wednesday, but the drainage has dropped off significantly. And since I accidentally removed the other one, I knew there wasn't much to it. Just pull.

So I did. It bled a fair amount, and my medical professional sister didn't answer my call, so we were forced to wing it. Balto the cat helped by hiding in my bag of sterile bandages. I considered just standing in the shower while my side finished bleeding and draining whatever I'd stirred up, but Dr. Nasty (Bob's rock name) pointed out I don't want water and soap trickling into the giant open hole.

It's totally fine. Probably. The other news is that I got my oncotype number back. My number is 30. The most recent research (the TAILORx study published in The New England Journal of Medicine in June), says that for an oncotype number of 25 and below, no chemo; 26 and above, chemo.

So chemo for me. We'll see Dr. Trottier again January 10, but I already know that he'll spend that appointment further explaining why I need to do it, and scheduling my first course of IV chemo to happen before the end of the January.

https://www.cancer.gov/news-events/press-releases/2018/tailorx-breast-cancer-chemotherapy

December 30, 2018

Since it's the holidays, and the myriad ways to resent my family members are closer to the surface...one of the questions my mother's oncologist asked her was how long she breastfed her children. "Well," she said, thinking about it, "That one [me], six weeks, and Nathan, eight months, and the other two, somewhere in between."

Excuse me? I was cut off after six weeks, while my brother, the youngest and the only boy, got to nurse for eight months? Ugh. So typical. Unbelievable.

I brought it up with my mother later, not wanting to seem petty while meeting with the doctor. He's dashing in an English countryside sort of way, and super nice. A 50-year-old child throwing a tantrum because her spoiled brother got something more than she did might not show me in the best light, so I waited.

Turns out I cut myself off at six weeks. Seems my aversion to snuggling and human touch started when I was an infant. My mom said I was an incredibly beautiful baby, though, much better looking than my siblings.* I guess I've always managed to look good**, in spite of being cold and dead inside.

*Mom said the first part, and I assumed the second part, based on pictures.

**I've always looked pretty good EXCEPT for my awkward years from about 8 to 15, when I finally got contacts. And now, a shocking number of photos Bob takes of me are terrible. It's like he tries to make me look like a monster.

December 30, 2018

I tagged along to my mom’s cancer appointments in Fergus Falls on Wednesday. I’ve been saying that if I’m going to have cancer, my situation is the best possible situation – that’s not true. It’s much better to be my mother. She’s got Invasive Ductal Carcinoma, just like me. But only one 5mm spot to my two 8mm areas. Like me, she’s hormone receptor positive and HER2 negative. Her cancer is a Grade 1 (least aggressive) to my Grade 3 (most aggressive). She’s scheduled for an outpatient lumpectomy on January 4, and while final treatment will be determined by further testing during and after surgery, her oncologist’s best guess right now is that she’ll do a light 3-week course of daily radiation, and daily estrogen-suppressing drugs for five years (I’ll likely be on the same 5-year hormone plan).

It was interesting going through a second set of breast cancer treatment appointments so soon after my own. I was impressed with everyone we met. I hadn’t been too excited about the medical personnel in Fergus since the ER doc who accused my sister Megan of seeking drugs and sent her home, while an aneurysm was hemorrhaging in her brain. It really only takes one bad experience to assume the whole system is messed up. I can happily report that everything I heard with my mom meshed with what I’d learned in the big city.  

Remember the $80 zip up tank tops I bought (well, insurance bought) to help with drain bottle storage? I absolutely hate them. They’re gathered across the chest, like a garment that expects breasts to go into the pockets. The sides cut high into my armpits. Basically, the seams of the shirt rub directly on the seams of my incisions. I tried making the arm holes bigger, but nothing worked. Terrible. That top is actually the very reason I ripped out the one drain early; I was trying to tug the fabric down to a place it wouldn’t irritate my incision, and I accidentally grabbed the drain through the shirt and tugged it right out. At the Fergus cancer center, this story somehow came up, and they offered me one of their Recovery Tees, a snap up t-shirt with internal pockets – and no irritating seams. I love it. I wish I would have known about these a month ago. I have an appointment to have this remaining drain removed next week – at that time, I will have had it a whopping five and a half weeks. The standard is two. Two weeks. I’m special, and by that I mean large, with a large incision area. It’s bullshit. More info on Recovery Tees can be found at www.couragetoconquercancer.com.

December 21, 2018

Funny story. A couple weeks ago, my mom had her routine mammogram, and was called back for further imaging. No big deal. That round of imaging prompted a biopsy. She got the results today: my 75-year-old mother has breast cancer.

"What the ever-loving fuck??" you might say. I did. Eight weeks and one day after my breast cancer diagnosis, my mother's breast cancer was diagnosed.

So crazy. We'll find out more next week, but everything looks promising -- again, very, very early diagnosis, and Mom is hoping just a lumpectomy will take care of it. It's hard to know if it would even grow into something problematic in her natural lifetime. It will be interesting to see how our treatment plans will compare. But seriously, though, are you fucking kidding me?

December 21, 2018

When in Minneapolis, in my efforts to never leave the house and also never interact with people, we use the Instacart grocery delivery service. We choose our groceries online, and a shopper who isn’t me or Bob has to go to the Wedge, brave the parking lot, and package up the myriad bulk groceries we order. There are some flaws; we’re relying on someone else to choose our fruit. Mostly it works great. Really great, and totally worth the delivery fee and gratuity. And since I initiate the “shopping,” Bob puts away the groceries when they’re delivered.

There were a couple problems with our last order. First of all, our shopper packed the cabbage on top of the bananas. Come on. There are highly skilled Wedge staff available to pack groceries if you happen to suck at it, like I do (know your strengths, folks). I order a full 2 lbs of bulk fresh spinach to go into our morning (noon-ish) smoothies each day. That’s a LOT of spinach. This time, we got a couple handfuls of spinach, yet were still charged $14.98 for two pounds at $7.49 per. I weighed the spinach – it was 6 oz of spinach. For $14.98. An outrage! And of course I wondered what else I was getting fleeced for. The Wedge tracks all purchases made under their member numbers, so one quick phone call and they were able to email me my last two receipts to compare to Instacart. There were more discrepancies – 14, to be exact, plus one item that showed up on the Wedge receipt that I neither ordered nor received.  It seems that for bulk items, like all produce that isn’t pre-packaged at a set price, and all of the other bulk stuff the Wedge carries, sometimes they use the actual weight of the item, and other times they default to the “ordered” weight, even if the reality doesn’t come close to matching that.

Because I WILL NOT LET THIS INJUSTICE STAND, and might be a tad hormonal, I’ve now spent literally hours comparing numbers, making a spreadsheet, and emailing back and forth with the high schoolers who make up Instacart’s customer service department. Every message gets a reply from yet a new customer service agent, and no matter how I explain the problem, they all be sure to point out that I can’t compare the two receipts directly: the Instacart receipt will be different because of the delivery fees and gratuity.

Oh, no shit? Look, you fuckers, unless you’re hiding fees in inflated spinach prices, I figured that part out.

I take much joy in carefully crafting messages, dropping scary words like “defraud,” “fraudulent,” “fraud,” “class action lawsuit.” I’ve said I’m looping in the Wedge customer service, so they will know about these bad business practices. (I could.)

The response to my first complaint was an apology and a credit of $2.94 to my account, to be used for future purchases. I went apoplectic, as is apparent from my response:

“$2.94 for 12 smashed bananas, five things that aren’t limes, and 6 ounces of spinach for which I was charged $14.98? Not even close.”

Unbelievable. They then required further documentation on the “things that aren’t limes,” forcing me to take photos. I know now that they were, technically, limes, but Kaffir limes, which are not a substitute for normal limes. Seriously, had my shopper never seen a lime before? The whole thing was fishy, including that the shopper was “Annie” yet was actually a man.

Now that I’ve dedicated a considerable percentage of my life to this fight for justice, I should note that when I showed Bob the spreadsheet comparing the last two Instacart deliveries with the actual Wedge receipts, he pointed out that even with the significant spinach fleecing, overall, the way they’re handling bulk item pricing, we’re actually coming out ahead and paying less than we would in store.

I’m now conflicted between my need to set the record straight and my frugality. It seems that the Wedge isn’t getting screwed – the mistakes must be eating into the Instacart service fees. Whatever. I tried. But then, in order to REALLY know, I should compare all of the receipts over the last year and see how we come out, right? “Class-action lawsuit…” I wouldn’t be doing it just for me, but for the little people: all the other less fortunate, trusting Instacart clients who pay strangers to do their grocery shopping when they can’t be bothered to do it themselves. And who (unlike me, apparently) don’t have time to pore through receipts, make elaborate spreadsheets and craft scathing email messages.

December 20, 2018

I have an amazing ability to make things happen that I explicitly want to avoid. In the early days dating Bob, he told me about a woman he broke up with because she was a spiller. Spilled everything, all the time. I knew it had to have been bad if Bob was upset by it. I’m not a spiller. Unless it's very soon after we met, and I’m sitting with Bob at a poker table in a casino, making a mental note of the location of my drink, then watching helplessly as my arm spastically lashed out and knocked my full cocktail across the felt. Or sitting down to a nice dinner party, resolving to not have any issues, and moments later snorting a tiny broccoli floret into my lung, causing a reflexive, catastrophic over-reaction that appears to others like I’m choking to death and need the Heimlich.

Once, in the dead of winter, I was leaving the office late, and as I was locking up, I thought, “God, wouldn’t it suck if my keys fell through the deck,” and immediately they did, leaving me to crawl under there in the dark and feel around for them. I have a history of dreading things true.

Having cancer, I’m finding, allows one to choose their own adventure in many ways. I didn’t have to have a double mastectomy; I may have had a similarly positive outcome with a lumpectomy and radiation. There are choices to be made, decisions weighed. The one thing I’ve been clear about from the beginning is my deep, deep desire to not have chemo. We met with my oncologist for the first time last week, he told me definitively that I’m at stage 1A (the first possible stage, unless you count stage 0, but I think that’s dumb). Good news! But then he spent the rest of the appointment explaining to me why I need to have chemo. Bad news.

An aside: you may know that Bob grew up on Long Island. During these years, the Islanders hockey team enjoyed a dynastic winning reign. Players, including star Bryan Trottier, would hang out at a bar called Dr. Generosity’s in Bob’s home town of East Meadow, New York, where later in life Bob would find out he’s not suited for bar work. Drinking in bars, yes; working in bars, no.

My oncologist? Bryan Trottier’s son, Bryan Trottier, Junior. I asked him if his star athlete dad was disappointed that he only became a doctor. Turns out he was fine with it.

So back to this chemo bullshit. We’re waiting on one last test result: my Oncotype number. If that number is 26 or higher, a whole lot of research says to do chemo. If the number is 25 or lower, the chances chemo will kill me outweigh the cancer-fighting benefit. The odds are that my number will be 26 or higher, because my cancer is grade 3 (out of 3, i.e., most aggressive grade).

Right now, at this very moment, I don’t have cancer. There could be some random cancer cells floating around my body, though, which is what the chemo would go after. We really want to prevent any of those rando cancer cells from setting up shop anywhere. I have no breast tissue left for them to invade. If they move in somewhere else, it’s a bad deal. For me. And for those who prefer me as a living person.

The TC chemo (Taxotere and Cyclophosphamide) is on the lighter side of the spectrum, but it’s still poison. It consists of an IV transfusion once every three weeks, for four cycles. Three months and I’m done. I will lose my hair. I will be able to work. It seems they’ve really dialed in the drugs to treat unwanted side effects, like nausea. I won’t be doing any air travel during that time, just to limit my germ exposure while my immune system is compromised. I will feel like I have the flu some of the time. Apparently, how I react during the first cycle will set the tone for the remaining three cycles, and I can expect it to be the same each time. We will probably fire up the Meal Train again.

But who knows. We’re still waiting for the final Oncotype result. Maybe chemo can be avoided. I’m getting used to the idea of it, though, just in case.

December 12, 2018

Big day! I showered AND went to a work meeting outside the house, including a couple people who don't know me, and don't know I just had surgery. This is the first time in over two weeks I've needed to wear something other than pet hair-covered yoga pants and the smelly fleece-lined sweater I've had on my body every day. I didn't want to advertise "no boobs!" but I'm also not trying to hide it. And I've still got the ever-irritating drain tube and bottle, which I definitely am trying to hide.

Most of my shirts and tops are some variation of a jersey knit. The geometry of my parts never did fit properly into garments with things like designated boob areas, so I've never had very structured tops. So now it's not like there's baggy fabric where there used to be something to fill it out. What I am missing is the "awning" feature of having breasts -- a point that protruded beyond my belly, creating a nice drape over the whole situation that is my midsection. The fall now goes shoulders straight to belly, which is a much different silhouette.

I settled on black skinny jeans*, a knit tunic-length top (black, to hide the generally lumpiness of the recent war zone and mask any potential side leaks), covered by a long cardigan, topped with a chunky scarf. The assortment of layers and fabrics did a good job of ensuring my breast cancer wasn't mentioned once in the meeting today.

I was out of the house for more than four hours! Granted, I went right to sleep in the recovery lair after I was dropped off back at home. But still. I felt good the whole time. I had been a little worried -- I still have PTSD from a lunch years ago. I was a few days past the removal of my gallbladder and thought I was recovered enough to go to a lunch with restauranteur Lucia Watson and now MN Congressman Dean Phillips.

It was just the three of us meeting to talk about fundraising ideas. Right after we ordered our food, my heart started racing and I felt woozy. I excused myself to the bathroom and tried to talk myself out of having a panic attack. It's much harder to convince myself when I'm freshly operated on and fragile. This lunch is an example of my worst-case scenario: there were only three of us meeting, and I needed to say actual words while the other two looked at me. It was important that the words made sense. It was a lot of pressure and in those days could have triggered a panic attack even without the added burden of being physically compromised. But since I had recently had surgery, what was obviously happening was that I was dying, VERY inconveniently, in a busy restaurant. Soon it wouldn't be only Lucia and Dean staring at me, but a whole bunch of people who probably wouldn't be willing to just throw some tablecloths over me and let me die quietly in the corner, in peace.

I needed to flee. As casually as I could, considering that I was dying, I returned to the table and said that I'd over estimated my post-surgery stamina, and was feeling a little tired and was just going to head home. No, no, I didn't need to take my soup to go, that's fine, so sorry, look forward to catching up soon, bye. I made it to my car without dying, so things were looking up for a quiet death with no commotion. I called my boss and told him he needed to tag in and get to the lunch in my place. I called Bob at work to say goodbye. I went home, took a nap, and woke up totally fine.

Luckily, today I had no reason to self-evacuate. I remained totally fine, start to finish.

* Skinny jeans. There is nothing about me that is skinny, including these jeans, and they're technically not even jeans. But "jeggings" is even worse. There's nothing good to call close-fitting pants made entirely out of thick elastic that have fake pockets. "Stretch pants"? No.

December 10, 2018

Surgery was two weeks ago today. I haven’t done an update about how I’m doing for a few days because nothing has really changed, and it’s not very exciting. I’m disgruntled. I’m totally fine, but tired of recovery. There’s still a tube sticking out of my side, and it’s uncomfortable and kind of raw and gross. Fluid accumulates in my drain bottle, or just seeps out of the hole in my side. When that happens, if I stand up and do “I’m a Little Teapot” a few times, the tube will work properly again. My range of motion and mobility are quite good, but I have the constant sensation of a vice grip on my armpits.

On Saturday I took a shower. Bob then said, “You should come with me to run some errands.” I told him I took a shower. He was like, yes, great, that means you’re ready to go. Oh, hell no. The point was that I took a shower, used all of my energy and accomplished my goal of the day. We left the house on Sunday briefly, and it was exhausting.

A while ago, before I had cancer, we’d booked flights to a client meeting in Washington, DC that is happening this week. Part of me thought I’d certainly be healed enough by now to make that trip. That seems ridiculous. I still haven’t felt like it’s a terrific idea to go to the cabin, three hours away. I do think I’ve turned a corner in the healing process – everything seems to have set up and feels less squishy and fragile. But I don’t feel great. I’m crabby. Bob remains good-humored as always, and is an excellent nursemaid.

December 8, 2018

Bob took these photos (see the Photos section; you’ll figure out which ones I’m talking about) last Saturday, before I accidentally ripped my left drain tube out. Bob took a bunch, and chose a few he particularly liked. He had missed the obvious problems with them. First, in spite of basically being a mole person the past two weeks, my sun spot mustache seems prominent. 
Second, my face is crooked. The brain aneurysm surgery I had in 2002 effectively gave me a teeny facelift on my left side when they closed up my head and stapled everything back together.

Those were the things that bugged me. Not the missing breasts. They were not doing me any favors even before they expressed intent to kill.