Tuesday, April 12, 2016
Easter pictures
Sunday, March 13, 2016
Only keep reading if you like super long melodramatic posts
It's late, and I'm super tired can't sleep, so let's see how that translates in my articulate-ness. This might be fun.
So, haven't been blogging. All negative three of my readers may have noticed. Which is fine; I don't write for an audience. I have no desire to be a professional blogger. I write for me. I like to think I'm a pretty good editor. I like to cut things down to just the right level of concise meaning, just enough and no more. But I've realized, sometimes I'm too good at editing. Like I might edit myself into silence. And then I'd disappear out of my own life. So, this blog, with all of its non-readers, is my small way right now of holding on to my voice.
Also, I've had a big post hanging over my head, needing but not wanting to write a post entitled: Hey, remember that time I almost died? It was too big and too raw and is starting to recede into hazy anesthetic dreams. And I considered letting it stay that way. But it was a hard-fought experience and it needs to be remembered.
So, way back in November, I wrote about how I came to peace with it all. If this was my path, I would walk it without self pity. And so I made my preparations and made up my lists for the two or three days I'd be in the hospital; I joked about having surgery just to get a few days' vacation. I checked out way more books than I knew I needed (that's one constant in my life). I straightened my hair to avoid the inevitable birds-nest-bed-head. I even got up that morning and put on makeup. Vanity and such. Never mind the sleepless nights and middle of the night second-guessing. I had this all planned out and it would be no big deal.
A little dialogue to illustrate the characters in this drama:
At my second pre-op visit, the surgeon saunters in in his vintage-styled clothing and asks, "Do you have a dude?" (He's a very colorful and, luckily, a very talented surgeon.)
I look up blankly. "What?" (I see no reason to have my husband take off work to accompany me to a routine visit where questions will be asked and answered just as they have at myriad other appointments.)
The (first) surgery went, I heard, very well. Minimal blood loss. It took slightly longer than expected because my spleen was larger than anticipated. I have some pictures they took of it. Fun little memento.
I woke up, things were good but hazy. I don't really remember anything else until my parents and Levi were there, and I told him to go home so he could get a good night's sleep. My parents stayed a little longer, and I started to get a little uncomfortable (the pressure in my abdomen the nurse attributed to a vapor lock in my catheter), so my mom offered to stay the night. I nearly said no.
It was late and I was ready to go to sleep when the CNA came to take my vitals. She tested my blood pressure, did a double take, then took my blood pressure on the other arm. "Um, her blood pressure is 60/30." They checked the drain they'd left in my abdomen, nurses came out of the woodwork, my doctor showed up what seemed like miraculously fast. "It looks like you're bleeding internally so we'll take you back in to surgery and see what's going on."
I'd had no idea. I would have just gone to sleep.
My hematologist later explained that because I'm young and relatively healthy, my body was able to compensate by constricting my blood vessels until it was at crisis mode. I still can't believe I didn't know anything was wrong.
Meanwhile my frantic mother is making phone calls, texts, posting facebook updates. I felt like I was at the top of a giant precipice, the sinking feeling in your stomach right before you go over the edge of a roller coaster. This was not a ride I wanted to be on. The last thought I remember is, "I don't want to be here."
I woke up, hours later, in the ICU. I think Levi and my dad both gave me another blessing. IVs, oxygen, a pain pump, blood pressure cuff, oximeter, I was all sorts of hooked up. Oh, and I shouldn't forget to mention the tube up my nose, down my throat, and into my stomach that would cause me so much agony. The surgeon came in at some point, good-naturedly accused me of trying to die, and estimated that I'd lost two-thirds of my blood volume. He explained they'd been able to filter and give me back a lot of my own blood, but did give me several units of plasma and platelets as well.
My incision never bothered me in the hospital, but as I came off the heavy duty drugs that tube rubbed my throat raw. I felt bad I never had much to say to my visitors because it sometimes hurt too much to talk. The tube was to suction out my stomach and keep me from getting sick until my bowels decided to start working again. I didn't eat a thing for five days besides hard candy and ice chips. I didn't feel even a bit hungry for four of the days. Once a reality show about restaurants came on and I watched it idly for a while before I thought, "Why am I watching this? I can't eat anything. But I don't even want anything."
The IV in my arm got infiltrated, I think is what they called it, and my arm and hand swelled to three times its normal size. They pumped so many fluids into me I was puffy all over. They took the IV out of my arm and put one into the artery in my neck so they could give me a nutritional IV. It had several different tubes on it so they could give more than one IV drip at a time. I called it my keychain.
After a few days the physical therapist came to see if I wanted to get out of bed and sit in a chair. He helped me up. I stood for a second, then lay back on the bed, completely spent. Later that night my nurse had be get up into the chair for a while, and it was easier. The next day, Saturday, it took a physical therapist and a walker, but I was able to go for an extremely short walk--I made it less than twenty feet before I was ready to go back. But it got easier every day. I improved enough that by the time I was transferred out of ICU on Tuesday (?) I was able to walk the whole way. (I used a walker and took a break in the middle, but I did go the whole way.) I got to be quite chummy (well, for me anyway) with the physical therapists. We'd chat on our walks.
Sunday morning the sacrament was brought around. Since I couldn't have any, they gave me a blessing instead. I've tried hard to remember it since it was what I so needed to hear. It was about sanctification, which means to make holy. When hard times come we can use them to draw closer to the Lord, to be sanctified and refined by the experience. It was so perfect.
After I moved from the ICU, they gave me another infusion of red blood cells in preparation for the chemo drug they'd be giving me to bring down my platelets. The last I'd heard they'd come up to around 600,000, so I was surprised to hear they were now up to three million. (Spoiler alert: having too many platelets is just as bad as having too few.) Those red cells really gave me more energy and made me start to feel like a person again. As did being able to get up and take a shower. Regular hospital rooms are the best. And, the next morning, I got to eat. I never thought I'd be excited about broth made from boullion at nine in the morning, but that first sip was so good. I was on a liquid diet for a little more than a day, and getting the same chemically-tasting liquids at regular intervals quickly got un-exciting. But Wednesday: Food! Of my own choosing! And the promise of a Thanksgiving home-coming! I hadn't had my kids come see me yet. First, ICU, and second, weird tubes in my neck. I didn't want that reality to be their memory.
But when Thanksgiving came and my routine post-op fever hadn't resolved itself, plans changed. I picked at weird hospital Thanksgiving. My family brought me some food from their wonderful Thanksgiving. I also picked at that because just because I could handle food didn't mean my appetite had come back. (It would take about a month before I could eat normal amounts of food again.) Levi brought the kids up to see me, where they watched a movie, ate the yogurt parfait I couldn't finish, and had almost nothing to say to me. Peter, who'd been searching the house for me and once collapsed in tears on some of my books, was vocally uncomfortable about it all.
I received so many visitors. My parents and Levi came every day, and my great uncle Noel came nearly every day. Once he sneaked me a piece of chocolate. And I ate it. My grandparents came, brothers, Linnell took pictures of my first walk (not sure if I want to see those.) Even my parents' bishop came. Not sure why. He's very nice, though. I felt bad if they came when I didn't feel like talking, like it was my job to entertain them.
Friday, when my fever still wasn't gone, they took me in for a ct scan to look for any pockets of infection. They also took the IV out of my neck and put a hep lock back in my arm in case they needed another IV. It felt really great to be free of tubes after ten days.
Saturday: miracle! Fever gone. No infections found. I'd started the day resigned to another weekend in the hospital and ended it at home, with my dad cooking dinner while Levi fetched the kids from his brother's house. My dad brought over their recliner and I slept in it for maybe three weeks.
My mom and my mother-in-law traded off coming to the house every day for a month. They took care of the kids, cleaned, and cooked, while I enjoyed twice a day naps and eating absurdly small amounts of food. I was usually even too tired to read. One of the first days I was home, I got up and ate breakfast with the family, wandered around for a few minutes, and then decided to skip showering in favor of a nap. I was completely wiped out. It was humbling to need so much help. (Side note: it's not super fun to hang out in your bedroom while your life goes on around you.) But such a blessing that it was offered, without waiting to be asked. So many people brought meals, offered babysitting. One day my friend showed up in a snowstorm to shovel the driveway. It was a blessing to be borne up by so many people.
And the more I did the better I felt. At three weeks out, I wasn't sure about trying to go to the ward Christmas party and then my book club, but I did. And I felt so much better the next day. (And, when Amy asked, I showed them all my awesome scars. Don't ask if you don't want to see...)
And now, four months later: my last CBC showed all my blood counts are completely in normal ranges. Hooray! I don't go back till August! My doctor said it could take six months before I really recover. So I don't know if, when I still get really tired, if that's my body or just the conditions of my life. But I've got a couple more months to use that as an excuse to be lazy.
So, haven't been blogging. All negative three of my readers may have noticed. Which is fine; I don't write for an audience. I have no desire to be a professional blogger. I write for me. I like to think I'm a pretty good editor. I like to cut things down to just the right level of concise meaning, just enough and no more. But I've realized, sometimes I'm too good at editing. Like I might edit myself into silence. And then I'd disappear out of my own life. So, this blog, with all of its non-readers, is my small way right now of holding on to my voice.
Also, I've had a big post hanging over my head, needing but not wanting to write a post entitled: Hey, remember that time I almost died? It was too big and too raw and is starting to recede into hazy anesthetic dreams. And I considered letting it stay that way. But it was a hard-fought experience and it needs to be remembered.
So, way back in November, I wrote about how I came to peace with it all. If this was my path, I would walk it without self pity. And so I made my preparations and made up my lists for the two or three days I'd be in the hospital; I joked about having surgery just to get a few days' vacation. I checked out way more books than I knew I needed (that's one constant in my life). I straightened my hair to avoid the inevitable birds-nest-bed-head. I even got up that morning and put on makeup. Vanity and such. Never mind the sleepless nights and middle of the night second-guessing. I had this all planned out and it would be no big deal.
A little dialogue to illustrate the characters in this drama:
At my second pre-op visit, the surgeon saunters in in his vintage-styled clothing and asks, "Do you have a dude?" (He's a very colorful and, luckily, a very talented surgeon.)
I look up blankly. "What?" (I see no reason to have my husband take off work to accompany me to a routine visit where questions will be asked and answered just as they have at myriad other appointments.)
The (first) surgery went, I heard, very well. Minimal blood loss. It took slightly longer than expected because my spleen was larger than anticipated. I have some pictures they took of it. Fun little memento.
I woke up, things were good but hazy. I don't really remember anything else until my parents and Levi were there, and I told him to go home so he could get a good night's sleep. My parents stayed a little longer, and I started to get a little uncomfortable (the pressure in my abdomen the nurse attributed to a vapor lock in my catheter), so my mom offered to stay the night. I nearly said no.
It was late and I was ready to go to sleep when the CNA came to take my vitals. She tested my blood pressure, did a double take, then took my blood pressure on the other arm. "Um, her blood pressure is 60/30." They checked the drain they'd left in my abdomen, nurses came out of the woodwork, my doctor showed up what seemed like miraculously fast. "It looks like you're bleeding internally so we'll take you back in to surgery and see what's going on."
I'd had no idea. I would have just gone to sleep.
My hematologist later explained that because I'm young and relatively healthy, my body was able to compensate by constricting my blood vessels until it was at crisis mode. I still can't believe I didn't know anything was wrong.
Meanwhile my frantic mother is making phone calls, texts, posting facebook updates. I felt like I was at the top of a giant precipice, the sinking feeling in your stomach right before you go over the edge of a roller coaster. This was not a ride I wanted to be on. The last thought I remember is, "I don't want to be here."
I woke up, hours later, in the ICU. I think Levi and my dad both gave me another blessing. IVs, oxygen, a pain pump, blood pressure cuff, oximeter, I was all sorts of hooked up. Oh, and I shouldn't forget to mention the tube up my nose, down my throat, and into my stomach that would cause me so much agony. The surgeon came in at some point, good-naturedly accused me of trying to die, and estimated that I'd lost two-thirds of my blood volume. He explained they'd been able to filter and give me back a lot of my own blood, but did give me several units of plasma and platelets as well.
My incision never bothered me in the hospital, but as I came off the heavy duty drugs that tube rubbed my throat raw. I felt bad I never had much to say to my visitors because it sometimes hurt too much to talk. The tube was to suction out my stomach and keep me from getting sick until my bowels decided to start working again. I didn't eat a thing for five days besides hard candy and ice chips. I didn't feel even a bit hungry for four of the days. Once a reality show about restaurants came on and I watched it idly for a while before I thought, "Why am I watching this? I can't eat anything. But I don't even want anything."
The IV in my arm got infiltrated, I think is what they called it, and my arm and hand swelled to three times its normal size. They pumped so many fluids into me I was puffy all over. They took the IV out of my arm and put one into the artery in my neck so they could give me a nutritional IV. It had several different tubes on it so they could give more than one IV drip at a time. I called it my keychain.
After a few days the physical therapist came to see if I wanted to get out of bed and sit in a chair. He helped me up. I stood for a second, then lay back on the bed, completely spent. Later that night my nurse had be get up into the chair for a while, and it was easier. The next day, Saturday, it took a physical therapist and a walker, but I was able to go for an extremely short walk--I made it less than twenty feet before I was ready to go back. But it got easier every day. I improved enough that by the time I was transferred out of ICU on Tuesday (?) I was able to walk the whole way. (I used a walker and took a break in the middle, but I did go the whole way.) I got to be quite chummy (well, for me anyway) with the physical therapists. We'd chat on our walks.
Sunday morning the sacrament was brought around. Since I couldn't have any, they gave me a blessing instead. I've tried hard to remember it since it was what I so needed to hear. It was about sanctification, which means to make holy. When hard times come we can use them to draw closer to the Lord, to be sanctified and refined by the experience. It was so perfect.
After I moved from the ICU, they gave me another infusion of red blood cells in preparation for the chemo drug they'd be giving me to bring down my platelets. The last I'd heard they'd come up to around 600,000, so I was surprised to hear they were now up to three million. (Spoiler alert: having too many platelets is just as bad as having too few.) Those red cells really gave me more energy and made me start to feel like a person again. As did being able to get up and take a shower. Regular hospital rooms are the best. And, the next morning, I got to eat. I never thought I'd be excited about broth made from boullion at nine in the morning, but that first sip was so good. I was on a liquid diet for a little more than a day, and getting the same chemically-tasting liquids at regular intervals quickly got un-exciting. But Wednesday: Food! Of my own choosing! And the promise of a Thanksgiving home-coming! I hadn't had my kids come see me yet. First, ICU, and second, weird tubes in my neck. I didn't want that reality to be their memory.
But when Thanksgiving came and my routine post-op fever hadn't resolved itself, plans changed. I picked at weird hospital Thanksgiving. My family brought me some food from their wonderful Thanksgiving. I also picked at that because just because I could handle food didn't mean my appetite had come back. (It would take about a month before I could eat normal amounts of food again.) Levi brought the kids up to see me, where they watched a movie, ate the yogurt parfait I couldn't finish, and had almost nothing to say to me. Peter, who'd been searching the house for me and once collapsed in tears on some of my books, was vocally uncomfortable about it all.
I received so many visitors. My parents and Levi came every day, and my great uncle Noel came nearly every day. Once he sneaked me a piece of chocolate. And I ate it. My grandparents came, brothers, Linnell took pictures of my first walk (not sure if I want to see those.) Even my parents' bishop came. Not sure why. He's very nice, though. I felt bad if they came when I didn't feel like talking, like it was my job to entertain them.
Friday, when my fever still wasn't gone, they took me in for a ct scan to look for any pockets of infection. They also took the IV out of my neck and put a hep lock back in my arm in case they needed another IV. It felt really great to be free of tubes after ten days.
Saturday: miracle! Fever gone. No infections found. I'd started the day resigned to another weekend in the hospital and ended it at home, with my dad cooking dinner while Levi fetched the kids from his brother's house. My dad brought over their recliner and I slept in it for maybe three weeks.
My mom and my mother-in-law traded off coming to the house every day for a month. They took care of the kids, cleaned, and cooked, while I enjoyed twice a day naps and eating absurdly small amounts of food. I was usually even too tired to read. One of the first days I was home, I got up and ate breakfast with the family, wandered around for a few minutes, and then decided to skip showering in favor of a nap. I was completely wiped out. It was humbling to need so much help. (Side note: it's not super fun to hang out in your bedroom while your life goes on around you.) But such a blessing that it was offered, without waiting to be asked. So many people brought meals, offered babysitting. One day my friend showed up in a snowstorm to shovel the driveway. It was a blessing to be borne up by so many people.
And the more I did the better I felt. At three weeks out, I wasn't sure about trying to go to the ward Christmas party and then my book club, but I did. And I felt so much better the next day. (And, when Amy asked, I showed them all my awesome scars. Don't ask if you don't want to see...)
And now, four months later: my last CBC showed all my blood counts are completely in normal ranges. Hooray! I don't go back till August! My doctor said it could take six months before I really recover. So I don't know if, when I still get really tired, if that's my body or just the conditions of my life. But I've got a couple more months to use that as an excuse to be lazy.
Tuesday, January 26, 2016
Alice, planning ahead
Alice's days as a three-year-old are numbered. I just signed her up for preschool in the fall. She's recently decided to stay dry at night so she can wear undies at night and be a big girl. These are all good things. But the things I'm going to miss are also good things:
She got an art kit for Christmas. She calls it her kit kat. As in "Where is my kit kat?!" It was very confusing until we figured it out. When she gets out her kit kat she sets up her office. Today the office is the kitchen table (which is better than the living room chair or floor, where Peter has a field day with markers). She asked permission for the table to be her office, but made sure to point out that she also wanted her office to be a science office too. When asked what an office was, she answered, "a place where you write things." And what she's been writing is...
A letter to Santa. Never mind that it's January. She narrated it as she made a series of circles and accidental letter e's on her paper, so I was privy to her wishes. The compilation of several drafts (I've omitted some of the repetitions is this:
"Dear Santa, Please bring me ninjas for Christmas.
"I'm so excited about my list. It's turning out great!
"Dear Santa, I'm so grateful for the doll that didn't talk. Please bring me some ninjas for Chris-mas.
"Mom, what does Peter want for Christmas?"
I suggested trains.
She continued. "bring me a dog for Christmas too. I would like that. It's a useful thing I decided to have. And bring Peter a train."
She asked me what else she should write. Thinking she was done with the letter to Santa, I suggested she write what she wants to learn to do this year.
"Dear Santa, please bring me a dog. I would like to learn to feed my pet this year."
****
We are not getting a dog this year. But I bet we could swing some ninjas.
She got an art kit for Christmas. She calls it her kit kat. As in "Where is my kit kat?!" It was very confusing until we figured it out. When she gets out her kit kat she sets up her office. Today the office is the kitchen table (which is better than the living room chair or floor, where Peter has a field day with markers). She asked permission for the table to be her office, but made sure to point out that she also wanted her office to be a science office too. When asked what an office was, she answered, "a place where you write things." And what she's been writing is...
A letter to Santa. Never mind that it's January. She narrated it as she made a series of circles and accidental letter e's on her paper, so I was privy to her wishes. The compilation of several drafts (I've omitted some of the repetitions is this:
"Dear Santa, Please bring me ninjas for Christmas.
"I'm so excited about my list. It's turning out great!
"Dear Santa, I'm so grateful for the doll that didn't talk. Please bring me some ninjas for Chris-mas.
"Mom, what does Peter want for Christmas?"
I suggested trains.
She continued. "bring me a dog for Christmas too. I would like that. It's a useful thing I decided to have. And bring Peter a train."
She asked me what else she should write. Thinking she was done with the letter to Santa, I suggested she write what she wants to learn to do this year.
"Dear Santa, please bring me a dog. I would like to learn to feed my pet this year."
****
We are not getting a dog this year. But I bet we could swing some ninjas.
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.
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.
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:
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.
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
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.
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.
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