Following up, and a short remembrance

So first of all, thank you so much to those of you who read my last post. I am grateful for your time and encouragement and for middle age--I know life is more than (my) heartbreak.

Second, a short story from a few years and days ago. When I started my cancer treatment I picked MU's hospital system on the theory (please don't laugh) that I would be able to walk out of the infusion clinic and back across campus to my library for work, about a 15 minute brisk walk. I was told that the side effects of chemo don't kick in until a day or so after infusion, and I thought that since I had no sick leave built up at my new job, I could work until I started to feel really terrible.

The thing that I didn't realize before my treatment is that the psychological effects of sitting around getting poisoned infused are immediate. Chemotherapy is emotionally exhausting; just imagine a salon appointment where you have to make conversation with the person who washes your hair, cuts your hair, colors your hair, waxes whatever you get waxed, and gives you a manicure--and you are having all of these things done in the same appointment, so you need to bring lunch, AND all of those things are done by a different person, more or less. And the more times you go and it builds up in your body the worse the side effects will be, and infusion appointments tend to be quite long, so there's plenty of time to worry about what those side effects might be. So while work might have been a distraction from chemo, I never really felt up to it on infusion days. Side effects are insidious and far-reaching, something I remembered again on Monday when my former colleague and brilliant essayist William Bradley died from cancer that was likely a side effect of treatment he had had nearly twenty years before for Hodgkins' Disease.

If you came to this blog from my Facebook, then you might have been a friend of William's too, and you know how much he adored his wife. Man, he loved Emily. And Emily loved him. I remember when they giggled together in William's cubicle in the basement of  Tate Hall, where graduate and adjunct instructors worked, and how Emily laughed when Bill told her, "You're the prettiest girlfriend I've ever had." (Of course she was.) They were so funny and sweet and devoted. They adopted two stray kittens and they went to their first jobs together and when Bill was let go from that job, Emily left too. When it looked like he wasn't going to be able to get a full-time academic job near Emily, William chose to forgo accepting a position far from her and instead moved to Tiffin, Ohio, where they were together all the time until he died. It is fiercely, horribly, tragically unjust that their amazing partnership has now been dissolved or transfigured, whichever you prefer, by death.

William was also a great friend, even to those he didn't know well but who were members of the Cancer Treatment Club. He was so very kind to me during my own treatment even though he lived always with the possibility of recurrence, and his questions about how I was doing came both from his own experience and innate empathy. If he asked me how I was doing, he didn't do it in a way that implied surprise that I was still alive. He simply cared. William was just a damn good person.

But the the miracle and cruelty of most cancer treatment at this point in medical history is that we can successfully kill cancer cells sometimes, but that the process doesn't always succeed immediately; or as in William's case, treatment either causes or doesn't prevent recurrence further down the road. Jamie & I were talking about William's death, because I was crying about him and thinking about Emily too. He asked, "Why did you go through all that if you thought it would kill you, Mom?" and I answered, "because the alternative was immediate death." He thought about that, and added, "Besides, you had a little boy to think about, and a family. Four sisters, and you didn't want there to be just four sisters, not five." (Sorry, Mom & Dad and cousins and nieces and nephews; he forgot about you guys.)

That's right. You do want to live for yourself, but also for those who love you, as long as you can. William lived longer than he was expected to after his initial treatment, but he also lived lovingly and joyously and fully. It's a cliche but his life inspired me to try to live more fully and fearlessly, and that's just what I intend to do. I will enjoy my little boy and I hope to see him grow up and become an independent adult. I will enjoy being one of five sisters. And that's what I can do.

A new routine

Sheesh, more than a few months since I updated, but not much had changed until recently, and really there has only been one significant change that caused others, I think.

Andrew has made new friends, reconnected with old ones, and fallen in love.

He has a busy social schedule now, on top of working quite a bit as an adjunct in different colleges in the area. His girlfriend is a friend who evolved into something more, and it is this relationship which has really changed things. Andrew doesn't want to spend time as a unit of three anymore; he feels that it would be awkward to spend more time with another woman than he does with his girlfriend. So we are trying out something else which is based on our previous schedule:

Mondays & Tuesdays: Jamie stays at my house. Andrew picks up Jamie from school and brings him home. He makes Jamie dinner, then leaves when I arrive.

Wednesdays & Thursdays: Jamie stays at Andrew's. Jamie has piano on Wednesdays and sometimes I join Jamie and Andrew for dinner afterwards, since his lessons are right across from the main library where I work. Sometimes I don't.

Fridays-Sundays: We are still working this out, but generally Andrew picks Jamie up and makes him dinner, then leaves when I arrive on Fridays. Saturdays he arrives at noon to take Jamie to brunch then drops him off later in the afternoon. Sundays are variable but I think Andrew would like to spend time with Jamie on Sunday nights at least sometimes. They might even spend one weekend a month together at his place.

Jamie is adjusting pretty well, with intermittent floods of tears because his dad spends less time with him. Last night, he asked, "why do women date dads with kids?" Obviously Jamie didn't mean "all women," he meant the woman that Andrew is seeing. I explained, as I have many times before, that Daddy needs adult companionship and as much as he loves Jamie, Jamie can't be his girlfriend. I also reminded him that he has always liked Daddy's friends in the past, so even though it doesn't feel that way now, Jamie will probably end up liking Daddy's girlfriend a lot and they will have fun together. And then I asked him how he felt about buying a pre-owned PS4 to replace the one that had broken earlier in the week and we talked about that.

Lest this carefully composed account make me sound too reasonable, let me say that I have been just as angry, frightened, and sad about this turn of events as Jamie. After all, once we had peeled away the illusion that we were a happily married couple, I was delighted to find that a fairly solid friendship remained between Andrew & me, and moreover that we really enjoyed doing things with Jamie as a family. Many people found that weird, and found our setup co-dependent, and Andrew now agrees with that point of view. I am getting with the program as fast as I can. Please send me your good thoughts.

So yes, I do miss my friend, but I love my son more than I miss my friend. The faster Jamie accepts this the better, so I am trying to model my acceptance for him, too.

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.