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.
Wednesday, October 14, 2015
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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