Tuesday, December 29, 2015

post-Christmas checking in

Merry Christmas!

It's been a while, right?

I'm still not sure if I want to rehash it all in great detail or let it become part of the hazy past. Oh, I'm sure I'll write it all out eventually. I mean, it's me. But for now, let it suffice that during my convalescence, somebody was here every day, for a month, to take care of things. That's a lot of days.

There's so much to catch up on, I'm having a hard time marshaling my thoughts. Christmas was wonderful. Peter didn't get a nap, and so was having sugar-induced meltdowns by bedtime, but other than that, they did great. Loved their gifts, and so on. I feel like I got super spoiled this Christmas.

Nathan wrote me a super sweet letter at school Thanksgiving week. You know, when I was in the hospital. He wrote "you are the greatest mom ever. I hope you get better soon." It was a sweet message from a very unsentimental boy. He's picked up the phrase "I know, right?!" from school and says it all the time. He is super excited about the microscope he got for Christmas. We're growing mold on a piece of bread so he can look at it. And, so far, I haven't had to learn to play Pokemon. That probably won't last.

Clara is tearing it up at kindergarten. Her reading is coming along nicely. She's already on her second best friend. (Not looking forward to when the friend drama steps up.) Her easy bake oven was put into use almost immediately upon opening. She's been wanting one for months. And how is it possible she's going to be six in five days?

Alice, fierce and adorable as ever, is very sure that the circular scribbles she writes say her name. I'm not allowed to write her name on her papers at nursery, because she'll just do it herself. She also wants to learn to read, so she'll sit by me with a book and ask me what each page says. She'll repeat it, and turn the page, and this goes on and on. We read a Fancy Nancy book once for almost an hour. She's recently decided she's scared of the dark, with all the fun that entails.

Peter. Peter started talking. I think we can credit some grandmothers' attentiveness, repeating words back to him until it clicked. So now his mischievousness is accompanied by adorable running and lots of "no!" (even when he means yes.) He also learned to nod yes. Shaking his head no, that's easy. he's been doing it for months. But, when you ask him something, his eyes light up and he deliberately and emphatically nods. It's almost a whole body effort.

Wednesday, October 14, 2015

The negativity ends today.

The last couple of posts have been downers. Blech.

Following the expert advice from one of my Facebook friends, I tried a four-week diet in an effort to get back into my pre-Peter clothes. I lasted 12 and a half days. And then I was so hungry and so grumpy that I decided treating my family decently outweighed (ha!) my vanity. I was going to just take a couple days off, but now come all the Halloween parties and my willpower is gone. So, later. Right?

It's just another area of my life where I have no control. I'd love to have my house clean and organized so I can find things when I need them, but my team of professional reorganizers take care of that. I have a list of projects, including several pieces of furniture that I plan to refinish, but that's not happening, what with limited time and energy. My life is not really my own at this stage. And I've been thinking of this lately, why we feel we need to keep things orderly, why Pinterest is such a phenomenon: we want to feel like we have control of our surroundings, so we feel like we have control over our lives, like we're not just a half-step away from the rug being pulled out from under our feet.

I scheduled my surgery today: November 18. So I should be back on my feet by Thanksgiving, but not enough to do any Black Friday shopping. If there's any good deals I don't want to miss, I'm sure I'll be able to send some of my lackeys to go fetch them for me. Maybe I'll have surgery every year before Black Friday.

I've been putting this off now for a year, since I don't like the idea of living without a spleen and the attendant risks of infection it will bring. But, a higher platelet count might mean I get to be less careful of when and how hard I blow my nose. (Never too hard, and never right before bed or right after I get up, or I could get an epic nosebleed.) Maybe I won't have giant bruises I have no explanation for. Maybe I'll achieve normal platelet counts (remission!). Maybe my counts will go up, to a lower but still safe level. Lots of maybes, but the chances are good.

So I'm taking the advice of the rather-sermonizing opening prayer from sacrament meeting last week, in which he counseled us to find joy in our trials. And mostly he was talking about the old and sick in our ward, specifically mentioning diabetes and arthritis, he did remember to throw in a mention for those who might be young and sick as well. It was a very interesting prayer.

But there is joy in everything. This past year the joy has been opening myself up to the love and support of friends and family. Their love has borne me up while I've been busy feeling sorry for myself and stressing over things out of my control. So thank you for that. And if this is the path I'm going to walk, I'm going to leave the self-pity behind. That just blinds me to all the good things along the way.

Monday, October 5, 2015

Hanging out at the oncology center

{I wrote this a couple months ago and saved it, thinking (of course) that I would come back and fix it. Ain't happening. Moving on.}

If you're wondering, moving and then starting a four-week course of treatment for your auto-immune disorder is a good way to feel really really tired.

Surprise!

My hematologist's office is also an oncology office. So, when I go, I feel two things:
  • Very very young
  • Obscenely healthy
I guess, technically I am sick. I just don't feel sick. If it weren't for the possibility of hours-long bloody noses and constant unexplainable bruises, I'd think I was perfectly fine. But the numbers apparently don't lie, and my platelet count has not come up to what it was before I had Peter: still low, but livable. They've dipped down to the moderate/severe classification. So, my doctor let me have a year to nurse Peter, which I was thankful for. I weaned Peter in early June, which I was sad and not sad about. Sad, because it's likely the last time ever, and not sad, because he became a biter and it was getting to be less and less of an enjoyable bonding time.

So I went in the last Thursday in June for the first of four weekly infusions of Rituxan. The hope is that it will kind of reset my immune system so I'll be in better balance for a couple of years. I'd also settle for forever. That would be fine. My doctor said I'd not really have any side effects from it, other than during the infusion I might feel tired and achy. (ha.) Also, apparently, it's a chemotherapy drug. Who knew a drug used to break up tumors in cancer patients could also be used for RA and ITP? Oh, the wonders of off-label uses.

Week 1: Got to the office at 10.  Did my CBC before heading over and choosing a recliner back in the corner. Looking forward to being able to sit and read for the next six hours, I had brought several books with me. You know, in case I finished one, or got bored, or maybe I was just giddy at the thought of that many uninterrupted hours. I did not bring snacks or water. I kept my head down and focused on my book, because I didn't want to bear witness to all the other human dramas that intersect in the oncology treatment center. They started me with Tylenol, and then on a drip of benadryl and prednisone. Once that was finished they started the Rituxan. They have to start it slow and then can increase the rate of the drip, once they're sure you are handling it all right. This is the part where I laugh at my ambitious reading plans, because the 50 mg of benadryl made me pass out pretty quickly. I fought it as long as I could, because I had an Erik Larson book on the Lusitania I was really excited to read. I conked out for the next hour or so. When I woke up I felt vaguely itchy. My scalp, and my throat. It took me a while, through my woozy benadryl state, to realize, Oh, I might be having a reaction. When they came around to turn up my dose, I told them, causing a flurry of nurse reactions. They turned off the rituxan, gave me more benadryl, and waited for me to feel better. And I soon did, but all the fluids they were putting in me, and all the benadryl, meant that I really needed to get to the bathroom, and there was no way I could walk there. So I needed two nurses to load me into a wheelchair and walk me past all the old, enfeebled, actually sick people having their chemotherapy, since I had seated myself in the chair furthest from the bathrooms. It felt a little ridiculous. Once I was seated back in my recliner my nurse said, "Maybe you shouldn't be driving yourself home." And I agreed. Once I was feeling non-itchy and they started the Rituxan up again, I again tried to read. I really just wanted to read. But I slept again, and woke, and they made me eat some snacks, and I started to feel better and was able to walk myself to the bathroom the next time. After some more napping my head felt a lot clearer and I decided I didn't need someone to come get me. At 4:30, only six and a half hours after arriving, I was done. I got home about the same time as Levi. I felt tired and a little shaky but thought I was doing pretty well. Linda, though, who had volunteered to watch my kids, looked at me kindly before she left and told me to take it easy. Levi later told me I looked really pale. And so I did. I laid in bed and finally got some good Erik Larson reading time in. The next couple of days I felt really tired but I took it easy and drank lots of water, and by Monday got back to normal living and unpacking.

Week 2

After my CBC I walked into the infusion room to choose a seat. I was scanning the far side of the room for an empty recliner when I heard a surprised, "Hillary!" My grandparents were sitting right in front of me. So, being the wonderful granddaughter that I am, I sat by them. My grandpa comes in every four(?) weeks for six days, for treatment for preleukemia. His infusions only last 30-45 minutes, so I sat and chatted with my grandma as he fell asleep. What grandpa doesn't fall asleep when holding still? We talked, and the woman on the other side of him joined in; a lot of the patients get to know each other if their treatment times happen to coincide. I was fighting the benadryl's effects by the time they were ready to leave. I'm pretty sure my conversation was getting less and less lucid. They offered to bring me a sandwich, but I had snacks, didn't tend to get hungry, and didn't want to bother anyone with obnoxious food smells. I didn't have the same reaction as I had the week before and so was able to get the infusion done a little faster. When I got home it was just about time to leave for DATE NIGHT! That deserves all caps. For my birthday Levi bought me tickets to "And Then There Were None" up at the Caine Lyric Theater, so we had dinner at the Bluebird before the play. It was lovely, although the Bluebird was so slammed we were nearly late. I want to love the Bluebird, because its ambience is so perfect, but it's food is sometimes not the best. It was a lovely night, but I paid for it later. As I continued to be miserable, exhausted and dizzy for the whole next week, I realized I hadn't followed instructions about drinking a lot of water because I'd been out and about. Didn't make that mistake again. (This was also the weekend I painted my chairs; see other post.)

Weeks 3 and 4 were much the same, although each week they were able to do the infusion a little faster as my body was better able to tolerate it.

I recently read a book (Lizzy and Jane) where one sister accompanies another to her oncology visits, and a lot of it seemed familiar. They talked and developed relationships with the other patients. I didn't. For one thing, I was always asleep most of the time. But also, I didn't feel the same as them. For one thing: much younger. But my fight is much less serious. I felt lucky to be uninitiated in such things as joking mentions of trying Rogaine, or talking of overwhelming fatigue and weakness. So I sat in my corner, admiring their good humor, their strength, honoring their fight, and wishing them well.

And I did eventually finish my book.

***

I shouldn't have waited so long to post this, because now I get to write this unhappy postscript: it didn't work. Not the slightest differences in my counts. I'm really wishing medical treatments came with a money back guarantee, because I'm still settling up my bill from July while biding my time, waiting for the Rituxan's effects on my immune system to wear off so we can do the immunizations one has to do before a splenectomy. Also, hoping for a last-ditch miracle. Because my spleen and I may not be getting along, but that doesn't mean I want to get rid of it.

Catching Up

October already. In between moving and Rituxan (post in the works), I feel like I lost the whole summer.  We had a couple small camping trips in August, and the day before school started I took the kids to the Treehouse and the splash pad, so the kids were able to end the summer not feeling too picked on.

School has begun and is going nicely. The kids were nervous to start at their new school. Nathan came home the first day and said it was horrible and that I should homeschool him. The first week was rough on him. I can sympathize--I started at a new school in third grade, and it's hard to start over with friends. He's doing well now, though. Clara was nervous to start kindergarten, but she's on fire. She has a week to do her homework--one worksheet, back and front. She comes home and does the entire thing. Then she sometimes makes up homework for herself to do the other days when Nathan's doing his. Nathan's doing better at his homework now that I let him move the school desk I bought at Savers from the entry to his bedroom. Easier to focus, less of a fight. What's the downside? Never mind the empty space in my entry that needs some love. The whole entry needs some love, though.

Come to think of it, the whole house needs some love. I'm monumentally slow at decorating. Mainly because I can't decide how I want things. And also, doing things seems to take some time. For the entry, I want to do some wainscoting, but that's a project that doesn't just happen. And if I do that, where am I going to put the gallery wall I've been putting together? I made myself stop buying artwork until I start hanging what I have. I look at my empty gray walls and think: "I love my gray walls." But in some lights I think: "Oh no. I think my gray walls are taupe." I hate taupe. Make up your mind, taupe! Are you tan? Are you gray? I also hate tan; see exhibit A, the tan-upholstered chairs I painted gray three weeks after we moved in, while battling early-July heat and extreme Rituxan-induced fatigue, because I couldn't look at them any longer. (They turned out lovely, by the way. Come to my house and I'll tell you all about them. Pinterest is the best.)

It's coming, though. I dropped some stuff at the DI with no plans of going inside, but decided to take a quick gander. So I unloaded Peter and Alice, and as we walked inside I could see down the aisle to a dream of a midcentury dresser, just waiting for me. I just need to decide what color to paint it, and if it's going to stay in the girls' room or become the sideboard I want in my kitchen. Once we got the dresser moved in, we put up the chalkboard silhouettes of paper dolls, and the gold vinyl polka dots on the wall, and their room finally has a bit of personality. The boy's room got gold stars on their walls. They had so much fun putting them up. And one of these days I'll get around to tweaking their placement to actually be what I had in mind.

Wednesday, September 9, 2015

The last paragraph was the best part

The trip was easy. It was no more dangerous than crossing the street, or driving to the beach, or eating peanuts. The two important things that I did learn were that you are as powerful and strong and you allow yourself to be, and that the most difficult part of any endeavour is taking the first step, making the first decision. And I knew even then that I would forget them time and time again and would have to go back and repeat those words that had become meaningless and try to remember. I knew even then that, instead of remembering the truth of it, I would lapse into a useless nostalgia. Camel trips, as I suspected all along, and as I was about to have confirmed, do not begin or end, they merely change form.
Robyn Davidson, Tracks

Monday, August 31, 2015

A slight miscalculation

Saturday night during bathtime, as I watched Alice wash herself, I said, "You're turning into such a big girl!"

To which she asked, "Am I a big girl now?" (pronounced: gull-er)

"yes!"

To Alice, though, a being a big girl is synonymous with being fully potty trained. All summer she's resisted potty training since she's still little. So after her bath she was pretty incensed that I was putting a diaper on her. "But I'm a big gull-er!"

Sigh.

Now that school is in (can I get a hallelujah?) and she's finally ready, in her words, "to be trained," she's actually cooperating with it. Makes all the difference in the world.

I'll leave school for a separate post for another day, but let's just talk about kissing for a minute. Peter kisses, specifically. He's just started giving them out, and they are an equal mix of adorable and disgusting. You get a whole mouthful of lips and teeth and always a lot of drool. But he's so happy. Now if I could just stop him "kissing" my shoulder. Because when he hugs my shoulder and leans his face in, I know it's going to turn into a big bite. He's leaving marks on my shoulder. Whatever he does, he does with gusto. And he's always so happy about it. Vampire.

And we did this months ago, but when we switched car seats so he could be forward facing, he was so delighted at the view. And the arm rest that he could finally reach. Now whenever we drive he keeps one hand touching the arm rest, just because he can.

And, talking. Mostly now he says "ball." Because if it isn't a ball or a phone, it isn't really worth his time. He likes the basketball hoop on the side of our new swingset. He'll get a ball and hold it over his head until somebody lifts him up to drop it into the hoop. It's adorable, but I wish he enjoyed the short hoop he could actually reach himself as well. And it doesn't even need to be a ball for him to enjoy it. Socks,  phones, anything can be called a ball. Today while I was trying to untangle a slinky (for the second time in as many minutes, but who's counting?), he kept pelting me with the folded-up wet diaper I'd just removed from his body, yelling, "ball!" If he weren't so sweet, it would have felt a little mean spirited. We'll have to have a family home evening about not bullying mom.

Friday, July 17, 2015

We got all sorts of moved

It's been a month since I posted? It's been a month. And how.

We moved! Four weeks tomorrow. The upstairs has been I think cleared of boxes. That was a pretty big goal for me to have done before my book club came over 2 weeks ago, and it happened. Never mind the garage and the basement. They're supposed to look like that. I'm trying to get organized and not just shove things in weird places, so I'm taking my time deciding where things should go.

The kids spent the first week thinking, Today will we make new friends? It was a little heartbreaking to watch. But they are all good little playmates so they weren't too bored or sad as the first week stretched into two and no new friends had appeared. Our street is inordinately quiet. We invited friends from the old neighborhood to play so they wouldn't be too lonesome. By the third week we'd met some people, and a family on the next street up came by to invite them to play. The kids were over the moon! Nathan practically catapulted out of the house. Alice and Clara were very trepidatious, but did not want to miss the opportunity. For a minute Clara tried to carry Alice, but they're nearly the same size, so that wasn't sustainable. They walked off down the street behind their new friend, holding hands, encouraging each other. So, new friends are happening, finally. This week we also had some neighbors come by and told us about the ward playgroup that happens every Thursday. So, next Thursday we'll be able to go and make more new friends. So I'm finally feeling like this move won't be terrible for them.