Un-Porting

On Monday I will have my port removed. This is both a relief and a little scary, as in: will having the port removed cause my cancer to recur? It's a completely irrational fear but the thought of going back into a hospital for any reason makes me remember what it was like to be sick, to feel like throwing up most of the time, to have a cold (because bald) head. This feeling takes over most frequently when I hear music from that time, but also when I have to go back to Ellis Fischel for a checkup or even when I just think about going back, like now. I guess you could say it's like the past has turned into a giant cane and I'm being pulled off the stage of my current life. It happens unexpectedly, like a mini panic attack, and it generally doesn't last long, but I've put off certain things to avoid that feeling.

Anyway, you can see the port here, in a Facebook post from SEPTEMBER when I talked about having it removed. Between my oncologist and my own fear it's taken awhile to get the procedure scheduled. They tell me the actual surgery is quick and easy. So now that it has been scheduled, I am looking forward to it like I'm going to be having an actual day off, a day to relax, because my parents are coming back to drive me to and from the hospital (hooray!) and all I'll have to do afterwards is to sleep off the meds. And I'll tell you what: sleep has been elusive lately. Work is busy, life is busy, and I need a break. So I hope all goes well and I get to just relax and hang out afterwards.

Once the surgery is over and my port is out, I'll be happy not to have that giant wire jutting out of my neck, not to worry about getting it flushed periodically. And of course it's an important step away from the days of treatment. So there's that (but I'm trying not to think about "days of treatment" right now.)

Happy weekend, all, and may all your parentheticals be pithy and well-placed.

Single mom

Me in my Moms shirt.  

Single ish, anyway. Andrew & I have separated and I think we get along much better now than before. I am not sure what he thinks: though the three of us spend lots of time together, he & I don't talk much about the separation anymore. We are sort of treading water, I guess.

In the spirit of being as indiscreet transparent as possible I announced the separation on my Facebook soon after it happened over Labor Day weekend. We worked with a mediator to figure out how to tell Jamie, to pick a time, and to work out a custody schedule (horrible phrase). We haven't discussed divorce in awhile, which bothers me sometimes because I don't want Jamie to be tricked into thinking we're going to get back together; we aren't. The reasons why are complicated, but basically, while we remain amicable and co-parent well, I am done.

Divorce is  traumatic, though, and the separation was traumatic, and cancer was traumatic, and serious, life-threatening mental illness and moving and loss of a tenured professorship were also very traumatic. So we are taking a breather and getting used to the new life.

Jamie was so sad when we told him that it almost makes me cry again to think about it. He has adjusted pretty well, though, partly because of therapy that we have had him in (though intermittently) and partly because we're all together so much anyway.

This is our schedule, and there is nothing like it in our groups of friends or acquaintances that I know of:

Leo atop Mt. Whirlpool.

Mondays-Wednesday mornings: Jamie is with me. Andrew picks him up after Adventure Club, the school district's aftercare program, and they come to "my" house, where he makes dinner for Jamie. He usually makes dinner for the two of us as well and it is often ready when I come home.  Andrew stays for another hour or so, usually leaving around Jamie's bedtime.

Molly getting ready to burn the house down.

Wednesday afternoons-Friday mornings: Jamie is with Andrew. I work late so I don't see much of Jamie on those days. I have some much-needed time by myself and socialize (if I socialize). I have joined a volunteer group, Moms Demand Action for Gun Sense, that focuses on gun safety and it meets monthly, plus sometimes there are other things, like a recent lobbying day at the state capitol. I have reconnected with old friends and we meet up for dinner every so often.

The "Koprivia" constitution

Fridays afternoons-Sunday evenings: Weekend time is still family time. Jamie stays at the house with me and Andrew is there pretty much the whole time. We go to movies (recently we saw Hidden Figures). We visit with Andrew's sister and brother-in-law. I have asked to have a weekend by myself at some point. I really want to finish unpacking and hanging pictures and I'd like to do it without any distractions, though our two young cats, Leo and Molly, will make that a challenge.

Recently Jamie made a family constitution for my house and said he would make another family constitution for Andrew's apartment (though I think he will forget). He called it the Koprivia constitution, combining most of my surname with a little of Andrew's. I think the one at Andrew's place would be called Mulvanva or something similar to denote that Andrew is the "owner" there and I am the owner at my house.

But the three of us are still a family, albeit in a different configuration. A few weeks ago Jamie asked me how I felt about Andrew (in front of Andrew, I should add.) I said, "I feel like your dad is a really good friend." Jamie said, "Is that all?" And I said, "Yep, that's all, honey, but many separated parents aren't friends at all. We're lucky." He didn't believe me until I named an example of a couple we know who are barely speaking, and then he did. I think he hoped that I would say, "I really love your dad" or something similar, so he was disappointed, but not devastated.

Back to the schedule: even though our goal was for him to spend every other weekend at each parent's house, Jamie prefers to spend most of his time at my house, and since it doesn't bother me too much to have Andrew around (and when it does, I ask them to leave for an hour or two,or I leave), we have a schedule that is unconventional but that seems to work for us pretty well. Probably the fact that Jamie is an only child is a big part of why we can still be together so much.

I'm okay with this arrangement for now because for one thing, Jamie doesn't take many baths at his dad's place and I want him to be clean, and for another, I am really ready to see him on Friday after not having seen him much, or sometimes at all, on Wednesday evenings and all day Thursdays.  If Andrew buys a house, Jamie might feel differently; he just doesn't love the apartment. But we'll see.

Grumpy

(Heavily edited to get rid of some of the whingeing.)

Long time, no blog.

But no apologies either. I am working on not apologizing so much. I’m a serial apologizer and that should be on my headstone, “She apologized. A lot. TOO MUCH.”

Health update: I am in medically induced menopause, thanks to Tamoxifen and who knows what-all. 

For me this means several hot flashes an hour. Which sucks. 

What I really hate is the fatigue. I am tired when I wake up at 6:15 am. No, I am not exercising. Yes, I am drinking too much coffee. 

I need a vacation by myself. I fantasize about a single room, piles of books, tea and coffee and wine. And maybe my beautiful cat Sammy, who died two days ago.

Seriously, sorry for this complaint-heavy post. I will work hard to make my next post happier.

Post Chemo Days

         

If you squint you can see some fuzz on my head.

My chemo officially ended on January 2^nd, so it’s been almost four weeks, and much longer than that since I have posted here. I apologize for the long silence. I think I’ve been depressed.

The side effects have not ended. Obviously I’m still bald, but the nausea just goes on and on.

• Neuropathy: tingling fingers and toes. Still happening.

• Expanders: still hurting.

• Fatigue: I am always tired.

• Nothing tastes right, especially coffee, which tastes bitter instead of strong, or smooth, or heartening.

• For Christmas I got a scorching case of rosacea on my face and I can’t seem to get rid of it. I look like Bill Clinton.

• Hot flashes: I mostly don’t wear my wig because my head gets too hot and the sweat rolls down my face and then I look like Bill Clinton when he looked in the camera and tried to redefine “sexual relations." Just a sweaty, red-faced mess.

I think, I honestly think, that I believed that chemo would end, two weeks (the length of time that I went between infusions) would pass, and I would feel totally normal, except with foobs and no hair. I also thought that I would feel grateful, or peaceful, or serene.

But these post chemo days have been pretty anti-climactic, pretty “now what?” I am not sure how to explain exactly, but unfortunately I have not felt grateful, or serene, or peaceful. Sometimes I have felt relieved.

The truth is that I am still very afraid. I don’t have cancer for now, but it could come back. Metastatic cancer is what I’ve been reading about and thinking about—cancer that spreads into the rest of your body, that can’t be cured, that you just have to manage and treat continuously. I have to figure out a way to live with this fear and come to some kind of peace with the fact that I just don’t know what will happen. And I have to raise a son and be fully engaged with him. And I have to be a librarian and be fully engaged with my job. And I feel obligated to support Andrew and I don’t know how to best help him, now that he is out of the hospital, doing follow-up therapy and taking his medicine.

As for next steps: tomorrow is my last expansion. In a week or so I will start Tamoxifen, which will increase the hot flashes, I’m sure. I will have follow-up exams and blood draws with my oncologist every three months for a year or two, which means my port stays in. Sometime this summer, probably, I will swap my expanders for implants and maybe get some fipples tatooed on what my plastic surgeon gracefully refers to as "the breast mound."

In other news, I am watching Downton Abbey with Andrew on Sunday nights—a longtime ritual for us, one that we have welcomed back into our lives. Jamie is working his way through Harry Potter, with irregular detours into Captain Underpants and Origami Yoda. 

Reminds me of Raymond Carter’s baker and what he had to say about small good things.

This is me now and other news

This is what my wig looks like...kind of like my own hair, except not totally even on both sides. I look tired and not so happy. Weird, because I had a great Thanksgiving weekend with my family down in Springfield, MO.

In chemo news: a week and a half ago I switched from Adriamycin and Cytoxan to Taxol, which for me means much less nausea (yay! I don't feel sick all of the time!) and a little more energy. Now that the nausea has receded a bit, however, my expanders have asserted themselves and I'm really noticing how uncomfortable I am, pretty much all the time. I was a stomach sleeper and I am now a back sleeper. Once my chemo is over, I can start thinking more seriously about reconstruction surgery, but I am already fantasizing about sleeping on my stomach. I still feel so...mutilated. I think reconstruction will help with that. I know not every woman chooses to have reconstruction, and now that I've spent so much time in and around hospitals, I know why, but I'm pretty sure I'm going to have full reconstructive surgery. I'll never have real breasts again, but I want to feel more comfortable in my body than I do now.

In dread-despair news: I think the Zoloft is working a bit. I have started re-reading Trixie Belden mysteries from my childhood; they are so uncomplicated and solvable, unlike cancer. I have also forced myself to continue to reach out to people, even just for a few moments, to chat, to get out of myself. It is so easy to walk around with that cloud hanging over me. Sometimes I just need to run out from under it. Sometimes, once I do, it even disappears.

In Andrew news: he is out of the hospital! He is staying with his amazing sister right here in Columbia for now, while he continues his therapy on an outpatient basis. Since I'm in chemo and pretty compromised and his sister is a live wire of energy, it seemed best and safest for him to live with someone who can really take care of him while he focuses on himself. We visit back and forth several times a week and talk every day, including FaceTiming so Andrew can read Jamie a bedtime story (when Jamie allows it).

In Jamie news: he seems to be doing really well. As the son of two English majors, Jamie is well able to articulate many things, including his feelings, but only when he decides it's time. For example, he told me that I picked a really bad time to tell him I had cancer--"I was just starting first grade! That was a really bad time, Mommy"--but he seems to have forgiven me for having cancer. He is so affectionate and snuggly. "Oh, I love you, Mommy," are usually his last words to me every night. Oh, I love you, Jamie.

Not that kind of cloud

Another pic-less post. I promise to do better with the visual aids in future.

So lately I've been struggling with my mood. Like, a lot. I oscillate between terror and depression about my cancer coming back, Andrew, my financial situation, and Jamie's well-being. It's like a cloud falls across my emotional landscape and I can't get out from under it. Then there are times when the the cloud blows away and I feel perfectly calm and even joyful. A cup of tea, Jamie's laugh, and especially, a visit from my parents, my sisters, a friend: these things can make me very happy. I try to focus on the importance and the permanence of the love of my family and friends versus the transitory nature of my chemo treatments, for example, and even the nausea that has gotten worse and worse over time. I am learning, painfully, how to adjust my way of thinking to change how I feel and to be satisfied with the results, no matter how short of "happy" they are.

I have also decided that more clutter is better, a significant development for someone who has been addicted to shelter mags for at least ten years. I've decided just to leave stuff out because it's easier to find and it makes the house look lived in. Sometimes, when the dread kicks in, I look at my cluttered little living room and feel a bit better. Sometimes feeling a bit better is all I can manage.

Take last week, for example. A cloud of dread-depression clung to me despite the warmth of my sister Kerri, who did laundry, projects with Jamie, and generally made us at home in our own home, probably caused by the fact I was getting sick. The day she was getting ready to leave, I started to feel feverish and took my temperature. I had a temp of about 99.5 and had begun to shake and shiver when she left. Later that night I called Ellis Fischel's Symptom Evaluation Clinic when it went up one degree and the oncologist on call told me it was okay to take tylenol or ibuprofen, but just once. I felt so lousy that I called my sister-in-law, Kerry, and asked her if Jamie and I could stay the night, then took some tylenol and waited for her to come and pick us up since I didn't feel safe to drive. At that point I was probably at my lowest ebb, mood-wise, and being with Kerry and her husband Andy helped enormously.

By the next morning I woke up feeling great and had Kerry take us home. Around lunchtime my fever came back and I called Kerry again to ask her to come to our house and watch Jamie while I went to Ellis Fischel to be evaluated. I drove myself to the hospital and went into the clinic, where, under observation, I popped a 103 degree fever and found myself booked to stay overnight.During the hours that it took for me to get a hospital bed I found myself obsessively texting my sisters and parents. One sister volunteered to come, but my parents overruled them and said that they would come back--and they had just gone home a few days before after my fourth chemo treatment. I knew Jamie was safe and my folks were on the way; and I hoped I didn't have pneumonia. The cloud of dread-depression got significantly smaller.

Later the cloud got a little bigger, mostly because I was so miserable physically. I wish I could describe how bad that hospital stay was, but on second thought, no. I'll just share one detail: I had a terrible sore throat and the resident doctor ordered me ONE throat lozenge every two hours. They weren't special morphine lozenges or anything. They were basically Sucrets--strong, but only for a few minutes. On second hand, a few more details: I didn't get a hospital gown until about 1 am and I couldn't get tylenol until around 10pm because they weren't sure what I had. Ultimately I was diagnosed with a strain of the flu, one not covered by this year's flu shot (which I got), and told to rest, take tylenol, and drink lots of fluid when I was discharged. I bounced joyfully out of there at 1:00 pm or so the next day. And then I went home and ate about 3 throat drops in a row in a mad act of rebellion. The cloud of dread-depression lifted for awhile.

And it hasn't come back too much since then. One reason: Andrew is out of the hospital.The other: I am halfway through my chemo. Tomorrow is my fifth of eight treatments, so I'll be more than halfway done. And finally: I increased my Zoloft dosage.

Chemo Days

It is surprising to me how much chemo has taken over my life. I thought, when I heard that it would be every other week, that it would probably occupy me on treatment Thursdays and maybe the weekends after, but the reality is more like this:

Thursday--treatment
Friday--Tuesday or Wednesday--treatment side effects

So really, I am spending every other week preparing for, having, recovering from, or managing chemotherapy.

That is an effing lot of time on chemotherapy, especially since Andrew is still in the hospital.

So I guess it is inevitable that sometimes I feel that rather than living my life and just getting chemo here and there I am actually living in a succession of chemo days, really, colored by the following truths:

1) Eating a little protein all the time is very helpful;
2) I have lost and gained the same 9 pounds every cycle;
3) Steroids are probably the reason for the gaining and losing;
4) I have lost my taste for coffee and I really don't care.

Things I do care about:
1) Feeling trapped at home;
2) Making sure Jamie's life is as normal as possible;
3) Asking for help even when I don't want to do it.

Yesterday I called my wonderful sister-in-law and asked her, in a hiccuping, snotty-crying kind of way, if we could just drop in at, oh, dinner time. Not that we would be eating, no. I eat way before dinner time and I would be bringing Jamie's dinner with me, but still. Just dropping in around dinnertime because I felt like crap.

Definitely not something I would have seen myself doing even a month ago.

So of course she said yes and Jamie got to play Portal with his Uncle Andy and Kerry gave me hot chocolate and talked to me until I was calm. And then she drove her car behind mine because mine's "check engine" light came on all of a sudden as I drove out to her house. As I drove I reflected on the necessity of asking for help. Even demanding it. A good thing to have learned during my chemo days.