Chemo Holiday

I realized I felt like shit when I was taking my daily maintenance chemo but I didn’t realize HOW shitty I felt until my doc let me discontinue.

Do I still have cancer? Yes, it will never be cured, but it’s under control enough that he has reluctantly agreed to let me stop taking chemo. I have to have my labs checked every three months and he says not-if-but-when my chemo markers start to go back up then he wants me to to back on it but he’s willing to work with me on lower doses, different schedules, etc. It’s kind of a pain in the ass getting my reminder to come in for a recheck when I’ve been fa-la-la-ing along without a care in the world. My last visit (first recheck) came back ok. I’m living my life in three month increments and as long as I don’t feel like I have the fucking flu every single day or cry swallow a pill or sleep 18 hours a day then I’m totally ok with that.

So, I’ve been able to be more active and do shit around the house, sew, clean, fix, wipe poopy fuzz butts and a bunch of other things. I hate summer and can’t wait for fall and so I’m a bit more happy every day.

One terribly strange thing that has been happening is that I’ve been having phantom PMS which include rage, crying jags, sore breasts, god-damned zits all over my face and nightmares that are so, so disturbing. No blood or any other indication that I am growing back some ovaries. Apparently people over 40 who go through high dose chemo don’t get their periods back but people below 40 do. I was 39 so I guess ask me when I’m 70 and I’ll let you know what happened with my period.

Still fostering kitties. After this batch I’m going to take a break. No really, I mean it!

I still see Basil (the squirrel) almost every day and Frances is just gone. I also see one of the two buns I released a couple of times a week.

 

 

 

 

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My new friend vanity

I used to think vanity was as bad thing. I remember being 16 and listening to Carly Simon’s “You’re So Vain” over and over on a friend’s grandmother’s juke box in her basement and thinking, “Yeah, what a dick for thinking this song is about him.”

When I think of the word vanity I conjure images of models on glossy magazine pages, the women who buy them and people who bleed money into looking cool.

I haven’t grown out of vanity, in fact, my first signs of really aging turned me into a mirror worshiping vanity monster who asked her doctor for prescription face cream. And I will admit, while I know I will never look like society’s youth obsessed ideal of woman, I am forging a look I think is more age appropriate and fucking cool.

And this brings me to why vanity isn’t a bad thing. It would be easy for me to lay in bed and never shower were it not for vanity. I may never pluck my eyebrows or file my nails. I might pick every last scab and hangnail until they bleed if I didn’t have that little voice saying, “What will others think of how gross you look?”

If I wasn’t vain I wouldn’t have the excitement of an extra $30 to go to St. Vincent de Paul and load up on second hand fabrics to design skirts I think are way cooler than commercial stuff, say nothing of motivating me to actually leave the house to show my creations off.

Same goes for ego. It’s pretty hard to not finish a promised project when you think about being unliked. It’s easy to take on animals not only because I sincerely love them, but also because I get to feel like a hero which comes directly from my ego.

So while vanity and ego can make monsters of us, I do not hate those words like I used to (when I was an actual monster starving myself to be thin) and I can now appreciate them for maybe what they were meant to do for us all along.

Medicaid to Medicare and other shit.

I’m being switched from Medicaid to Medicare thanks to the Gov’t. I don’t actually mind except now I’m required to pay 33% of thousands of dollars a month Revlimid. I’m applying for lots of financial assistance programs so I won’t have to pay that, but seriously. I mean I appreciate Revlimid and all but  you’re going to charge that much for a drug for people who can’t work because they are dying of cancer? What dummy thought of that?

The squirrels are becoming adults and have just a few months before being released. I’ll post photos below.

I finished the Shiva and Parvati painting a while ago, just never posted a final photo. See below.

My back is way better. Like, almost completely healed. I walked (once I could walk) and just did more and more. I bought a scaffolding thing at Lowe’s and used it as my portable work station, so I could give the ironing board a rest (because I couldn’t sit) and Grandma gave me a spare bed she had laying around and that helped tremendously. Mine was, like,  30 years old I just found out. Gross.

The ferrets are wonderful and happy that I can bend over and get on the floor and play with them again. So am I!

 

I’ll try to make this short and sweet: I still have cancer and I’m still on Revlimid three out of four weeks of the month to keep it in “remission”.

A couple of weeks ago my right butt cheek started hurting and I looked up sciatica, which is a symptom, the name for pain associated with the sciatic nerve, but it is caused by SOMETHING ELSE. I had no idea.

In my need to self-diagnose I determined it was residual pain left over from my bone marrow biopsies, flaring up because (insert speculation here). It did not get better, but increasingly worse to the point that I could only stand and lay on my left side for twenty minutes at a time.

I had to log roll out of bed, onto my face, and use unstable and unsafe shit in my room to help me stand up and so I decided it was time to see my cancer doc who ruled out cancer hiding out in the thecal sac in the tailbone area and pretty much said, “Not cancer, not my problem. Call your primary.”

Anyway, I met an orthopedic doc last week who said I had a huge, bulging disc in the last vertebrae in my spine that is pushing on the to of the sciatic nerve sending pain down to my heel and right into my labia, thank you very much. You should see me trying to take a shit. He stressed how big it was but said that’s good news because they tend to heal faster, unlike the smaller ones that can be hangers on. He said I’d be back to myself within three months. He offered a steroid injection in my  back and I asked if it would go systemic and add another 10 lbs to this already fat, immobile body and he said yes and I said no.

It’s hard to type or be on the computer in general because I can’t lay in bed or sit in a chair at a desk. Mainly I stand in slippers at an ironing board which can surprisingly hold the weight of a lot of projects and since I can’t just go to bed and emotionally hibernate for two months that’s what I’ve been doing.

I’m not happy (at ALL) but I’m managing. It helps to wake up to two a-hole juvie squirrels and ferrets who are depressed because mommy hasn’t played with them in over a month. It’s a nice distraction when the pain is the worst of the day.

Lot’s of positive talk helps, like “Fucking do it. Onetwothree, GO!” and “I think I can, I think I can” 12 times on the stairs to my room and also things like: Jesus Fucking Christ, What the Fuck, This is Bullshit, Are You Fucking Kidding Me, Stop With the Crying, Body I Hate You and Just Fucking Do it!

Cardinal Parenting Lessons

We have two bird feeders on our back deck. One hangs so that no squirrels can get on it and the other sits on the corner of the deck railing where anyone can get to it. I initially thought the deck feeder would only be used by squirrels, and sure enough I have looked out and found some fat ass squirrel laying all spread out on it taking a binge break. But it has also become a Mommy and Me hang out for all the birds and their fledglings because she can pick seeds out of it and a little line of mini-moms stand in a row on the deck railing waiting their turn for her to pick up a seed and put it in their mouth.

When I first saw this, I thought it was pretty darn cute. The babies cry and vibrate their wings so fast they look blurry, and mom gives them a seed. So, when all of the sparrow moms and their broods come down in the mornings there are 4 moms and, like, 20 babies. It’s a sight. I always scatter a little bit on the deck and eventually the babies figure it out and eat by themselves, and after a week or so, I’m back to having just a few birds around, here and there.

This morning when I was washing squirrel formula out of syringes for the billionth time, I noticed Daddy Cardinal and his baby. There is only one couple of cardinals that come on the deck at all. Did you know they mate for the season, and 80% get back together the following year? They used to come together in early spring, but then only one would come at a time and I guessed the other was sitting on an egg, or a baby bird.

So, this morning was the first time I saw their baby. Baby Cardinal was screaming and vibrating at Daddy Cardinal while he furiously picked up seeds and put them in it’s mouth. He seemed frazzled, like he couldn’t go fast enough because his kid was acting like an asshole in front of everyone in the yard and he wanted to shut it up. Eventually they flew away.

Just now, as I was washing, I noticed noisy Baby Cardinal in the same spot screaming its little head off and shaking wildly. I craned my head to see Mommy Cardinal eating seeds, one after the other, not giving a shit about Baby Cardinal’s cries. She seriously wouldn’t even look at it, but she made sure to pick up a seed and eat it right in front of the baby’s face. Baby Cardinal then rushed her, and pushed them both into the feeder, where it figured shit out and ate seeds by itself. Mommy, meanwhile, stood by eating her own seeds.

So the moral of the story is this: You can shove things at your kid to get it to shut up, but it will always want and you’ll be doing it forever. Or you can show your kids how to do things for themselves and one day they’ll leave you alone.

 

Dr. DoVeryLittle

You know how when you find out you have cancer and there’s a man telling you that things are seriously OK and he begins to cure you and you think he’s a god, but then a year later you’re so over him and sick of his shit? That happened last week.

I had an appointment with my cancer doc who I hadn’t seen in three months. I had, however, been going in monthly to have my blood drawn for routine tests. He asked me how I was doing and I said, I think I have a UTI and he said, Do you want us to check your urine? and I said, Um, yeah (??).  Then he asked me how my appointment was at UK (where I had my bone marrow transplant) and hadn’t it been a year, and did they vaccinate me. I said, I thought they were going to call me. And he lowered his voice an octave and looked at me over his glasses (a move that says you better start taking this seriously, young lady). I said I’d call them, but then right at that moment, I got really uncomfortable and stopped paying attention a little bit so that when he put his hands in a steeple and told me my cancer cell numbers were up last month and if they are still up after today we have to discuss other types of chemo, I didn’t say much. I said, OK. Then he rolled over and turned his once 45 second exam into a 15 second exam and shook my hand and said he’d see me in 6 months, unless the cancer is back then he’d call me. I was pretty shocked as I walked out.

My first though was, You forgot to check my urine, and then, Fuck it, I have to get out of here then, Did he just tell me my cancer is back? and finally, I’d rather die than go back to UK for a visit. I proceeded to hyperventilate in the car and then come home and have a panic attack, and vomit, and take my crazy meds and cry until the beer I chugged kicked in I got it together enough to call Mom. My reaction surprised me, even while it was happening. I didn’t even act that way when I was initially diagnosed!

Anyway, it may be moot because I think he fucked up. I came home and checked my online chart and there aren’t even blood results listed for the past two months. Then I looked for the last time he did draw that particular test and it was in December. Then when the test result from the visit did come in, it was normal. And he hasn’t called, so I guess I’m fine.

I can’t have that reaction every time I get news like that. I have incurable cancer that will progress. That’s a fact. I think I just made myself forget about that and it caught me off guard. I will admit, however, that the idea of visiting UK for a follow-up visit is upsetting me. It occurred to me that I might have PTSD from the transplant. I mean, I survived it, and at the time didn’t think it was a big deal, but the harvest was the worst pain I’ve ever felt and the transplant was isolating, painful and worrisome. I’ve decided to find a cancer counselor so I can work through my shit and hopefully be less of a freak in the future.

 

 

Whatever Craigslist

Last night I made out with John Cusack!!! (in a dream and it was the current John Cusack, not the High Fidelity John Cusack, so…)

I answered an ad on Craigslist for someone needing help cleaning, organizing and landscaping a garden. I emailed for more information and since I couldn’t outright ask, Are you a rapist??, I asked for location, age and sex. After a few emails, I gave my phone number and Joe called. I made arrangements to meet him the next afternoon. I did my due diligence locating his house on Google Earth and all possible escape routes, should I need it and left a note on the fridge to the tune of: If I don’t return I met a guy named Joe about a job and here’s his address, etc.

Joe lives in Alexandria, the city part, and is a married Vietnam vet with a severely disabled adult daughter. They own a cozy little place with a garden bigger than the house. He met me at the door holding a cup of iced tea which made me like him right away. I asked a few questions and he showed me around, being pretty “whatever” when I asked pertinent questions like, “What would I be doing?” He wanted to talk about my cancer and the cancer of all of his dead relatives and before I knew it we were sitting in two porch chairs (NOT talking about the job) FOR OVER AN HOUR! He told me stories of his life while I obsessively ate cough drops and commanded my foot to stop impatiently shaking and hands to stop picking cuticles. All I wanted was a friggin’ job description and it dawned on me that may be this was the job! May be he just wanted someone outside of his life who he could tell his tales to. We parted, him about to start another story about a woman at this place with this tattoo and…, and I still confused about what the job was. He said he’d call.

In other news: I’m illustrating a children’s book about astral projection. I’m sketching, then inking in black and watercolor painting that. I met with the author yesterday and she likes them all. I have 5 more that I have to get to serious work on because deadline is the end of the month.

The ferrets are WONDERFUL. I love them so much. Look how cute!