I felt SOOOO much better after being released from the hospital. I guess the 18-year-old blood is doing its work. However, a new side-effect for me is that I feel just a little queasy all the time. I decided that it wasn't worth taking the medicine which makes me feel brain-dead and tired out. So it reminds me of being pregnant. Yuck.

Steve and the kids had arranged the vacation days into job/reward sequence. They have cleaned and de-junked the toy room, rearranged the furniture in the family room downstairs, and cleaned their bedrooms, so we went to Ikea one day for the reward. I got a wheelchair, which was extra-large, and we had a grand time looking at everything and oohing and aahhing. Steve had brought measurements of the dining area, and we measured several dining tables, but none were exactly what we were looking for. We were all starving by the time this was all over, so we decided to be creative and eat at the Ikea restaurant! It was very delicious, and rather inexpensive.

While I was waiting patiently with the slow eaters, Steve took the quick eaters and disappeared back into the store. We were just about to try to find them when they came back and whisked us all away and made us sit around a table in several different formations. Turns out that the table was 1) on sale, 2) able to seat at least 8 without a leaf, 3) had a leaf to enable it to serve at least 12, and 4) had benches for each side, which means we could put more people of little sizes. So we bought a new dining table! Steve and Joseph put it together, and it is extremely lovely and functional -- the benches push in underneath to be completely out of the way.

What I Did Over The Weekend by Jan Spunker*
* The pizza delivery receipt had this name on it. I guess that's what my name sounds like over the phone when I pronounce it fast, because this is the second time my name has appeared like this. :)

It began Friday evening when some people were getting ready to go to admire the lights at Temple Square. Chris, Nathaniel, Joe and I had decided to hold the fort here because I could feel the achies coming. I was suddenly overcome by a giant wave of nausea and ran to the only available porcelain receptacle. This is very unusual. In fact, I can say this is the first time it has happened since I began chemo. The wave subsided slowly and I headed straight for Mattressville without stopping at Go or collecting $200, even though I probably needed it. From there I dispatched Chris to buy more Claritin, Nathaniel to find the Aleve and the promethazine anti-nausea stuff, and Joe to put a bed buddy in the microwave (flannel bag of rice).

The next big development came when I woke up shivering so hard the bed was shaking. After piling on all the blankets I could reach and waiting at least five minutes, I woke Steve up. He re-warmed the bed buddy and snuggled up, but I was still shaking. Tried to find the thermometer, but it wasn't in the zip bag and I couldn't really sit up to look in the drawer. Steve was by now back asleep and I didn't manage to wake him up. I know I eventually went to sleep because I woke up feeling immensely hot, but I remember waiting and waiting and waiting while I tried every trick I knew: relax everything, sing, count sheep, curl up, stretch out, go to the bathroom, come back, tense everything.

Saturday was basically a blur of me in bed realizing that the sounds I had been hearing for a very long time were actually my three youngest playing with Legos with Haruka; or that it was 1 p.m. and my stomach had said absolutely nothing about food; or that I had refilled my cup at least twice already and this was the seventeenth trip to the bathroom. I did actually descend and try to eat yogurt and granola but after six spoonfuls it was too much and I took my bowl back to bed. That wasn't much better.

The next time I realized I was hot, I sat up and searched in my drawer. The thermometer was buried. When it was done measuring, it said 101.1 and I decided that since my temp had probably been higher at several points during the recent past and 101 was the official Crisis Point Go To The Emergency Room, I should. I yelled for Jason.

Steve actually arrived, so off we went: candy-striped pj pants with pink Survivor t-shirt and red hat, coat, boots, purse, book, cup. They brought me warm blankets while I sat not watching the fish, just wishing to be horizontal. And of course, you always decide after you get there that you probably shouldn't have bothered, but by then you've already started the giant ER ball rolling and you might as well hang on and go with it. The time was somewhere after 4:30 p.m. Steve was reading my book, because his was boring, I guess.

ER Summary: Questions. Waiting. Stethoscope. Waiting. Poking. Waiting. Prodding. Thermometers in ears. Waiting. Machines beeping. Nice nurse. Blood pressure too low. Doctor joking about dancing with his elbows. Waiting. Blood work - why do they need three huge tubes? Third trip to the bathroom, this time with a pee-in-this-cup-please. Waiting. Weird admitting doctor who doesn't seem to realize that the reason everything he touches hurts is that I just had chemo (even though I've told him several times), not that I have appendicitis or leprosy, and if he'd stop poking me it would stop hurting. Waiting.

Amazingly, I am cheerful still. We make jokes. I make fun of Steve for reading my military romance thriller. Steve says I'm worth all the waiting.

I have a UTI (initials are starting to bother me - urinary tract infection), which ordinarily would be prescription and have a nice day. I, however, had chemo last Wednesday, and have blood pressure so low it makes the machine think I'm dead. They call the on-call oncologists (sorry, couldn't resist) and the verdict is: to the hospital. The reasoning, as explained by the tall blond bearded doctor who thinks I look familiar, is that I am already moderately sick and have poison in my veins, and therefore hefty antibiotics through Penelope for 24 hours would be the better way to attack the infection. I really didn't have energy to launch a counter-argument, and besides, I will have quiet and a horizontal surface to sleep on!

By the time my bed reaches room 795, after a strange Mrs. Piggle-Wiggle-house journey looking at ceilings, it is 10:30 p.m. I meed Lindsey and Matt and Brook, who proceed to hook me up to all manner of tubes: one on each leg like I had after surgery so I won't get blood clots, the one the ER put in Penelope to the IV post with IV fluid and antibiotics, one on a finger to monitor my oxygen level and pulse. Brook gets a shock when the blood pressure machine thinks I'm dead, and we joke about it while she gets a manual cuff. The rest of the night is sleep, drinking lots of water, calling Brook to come unhook me so I can go to the bathroom, IV bags of antibiotics, and someone taking blood at 3 a.m. from my arm, since Penelope was busy with IV fluid and stuff.

Sunday morning I am actually hungry, and I manage to eat some of my breakfast, even though the French Toast tastes like plain flour and just looking at the sausage makes me queasy. I feel a little better than yesterday. Greg is my nurse today, and his scrubs have Dr. Bunsen and Beaker all over them. I discover that someone has written about the manual blood pressure cuff on my chart, and Kara and I joke about my propensity to make machines freak out. After a while Kara comes in and asks when I would like to shower. I am speechless, because I am enjoying my book too much to think about anything else and I don't really want to shower, but Kara assures me that she can provide everything I'll need. Sure enough, twenty minutes later Kara has brought soap, shampoo, a shower chair, two towels, a plastic thing to cover Penelope, and a lovely blue hospital gown. However, Roxsann has come to visit, and that is gobs more fun than showering.

Showering while hooked to an IV is an interesting experience. I have to be careful which way I turn so I don't wind myself up in tubing. The hot water feels great, but I'm very glad the shower chair is there. The only real problem I encounter is that I can't figure out how to get the lovely blue hospital gown on so that the IV tubes come out in the right place. I discover that the shelf over the sink has toothbrush, toothpaste, mouthwash, lotion, baby powder, lip stuff, and deodorant. I use the toothbrush right away, because my efforts to clean my teeth with a washcloth in the shower were less than successful.

While I'm brushing my teeth, another resident comes in and starts to ask questions, which I understandably have a hard time answering. The basic gist of the conversation is that they would like me to remain in the hospital until I've been on antibiotics for more than 24 hours. This means I won't be released until Monday morning.

Mom and Dad come to visit just as I'm finishing lunch, which tastes fabulous and sweeps away prior prejudices against hospital food, although I can't quite forgive the Yellow Jello and Juice breakfast and Red Jello and Juice lunch of my previous hospital stay. We have a good chat, and then I'm back to my book. My body is tired of being in bed, so I sit cross-legged with my book in front of me. After a while I notice that the pages have sprinklings of dark hair, and I realize that I've been rubbing my head and the blankets and pillows are sprinkled with hair, too. I guess I wasn't done losing hair after all.

Kara and I take a walk around the floor and have a good time together. I'm having fun talking with all the nurses and PCTs (patient care technician). They are kind, competent, fun to be with. After I get back to the room, I hear a group of people coming down the hall, and can single out Reuben and Joseph, so I'm not surprised when Steve and all the kids, plus Jason and Haruka, show up. The room suddenly seems small. Since I won't be at their dinner and they won't be at mine, we take the time to have our dinner-time ritual of each person sharing something positive about the day. Since it's Sunday, most of the comments are about church. I suddenly feel very isolated, as if I'm cut off from my real self and the connections I have with family members. When Joe and Reuben start getting squirrelly, Steve says it's time for them to go. The room is too quiet after they leave.

I hear the Mormon Tabernacle Choir singing from someone else's room, and turn on the TV. After that broadcast, I find a televised sacrament meeting, and several more religious programs on BYU-TV to watch while I'm eating dinner. How I can be so hungry when I'm just laying around is a mystery to me. When the TV programs start to repeat themselves, I discover that I am thoroughly bored. Luckily, I notice that the guard has changed, and Lindsey is back!

I ask for games or books, and say that she can play with me if she'd bored. While she is gone searching, Kayleen my PCT comes in and I offer her the same deal. Lindsey arrives first, with a Chinese Checkers tin, Mancala, and two mysteries. She goes off again to attend to people, and I discover that inside the tin are chess and checker pieces, and a bag of mismatched regular marbles. I find enough blackish ones to fill one triangle, and enough whitish ones to fill another, and then some with blue centers for another, and some with red centers for another. Success! Lindsey says she lost the only other time she played Chinese checkers, so I try to take it easy, but all those years of cutthroat games against my brothers comes out against my will. We try Mancala next, and since I have no idea how to play it, Lindsey explains. Halfway through the game, Kayleen arrives. It takes on the air of a party. We laugh and joke and make fun of ourselves for the silly moves we make. Lindsey has to leave, so Kayleen takes over. When they finally both have to leave, we have had a great time, and used up two hours! I read some of the Dick Francis mystery and then go to sleep.

Someone wakes me up at some unearthly hour to take my blood. When I tell her that it has to come out of my right arm because of the danger of getting edema in my left one, she says that they should give me a bracelet to wear telling people that in case I'm asleep.

The next morning I awaken to find a piece of paper towel on my wheelie tray. It reads: "Mornin' Tytto (supposed to have two dots over the o -- Finnish for girl)! Didn't wanna disturb you but I did want you to know I really enjoyed being your PCT. I hope to see you before you go...if not, I'll give you my best wishes now. Kayleen. p.s. Have a great Day!" I am amazed at how much this means to me. How can I make friends in just one night? I feel like I have a connection with them.

Today my nurse is Julie, and my PCT is Brittney. I know people joke about how horrible hospital food is, but everything tastes wonderful to me, and I don't have to decide what to fix or cook it or clean up afterwards. The first person to arrive after Julie and Brittney have checked all my vital signs is Dr. Noonan, who says that I can be released today as soon as Dr. Wardle comes to check on me, which will be about 11 a.m. Three hours to wait. Luckily, Paula shows up with two more books and we talk for about an hour until she has to go fetch Aunt Amy from her doctor appointment.

Before I finish my Dick Francis, Dr. Wardle comes to say that my hematocrit level is dangerously low - 26. I've had lower, but I don't want to get into that. He suggests that I need a transfusion. I ask him to call Dr. Wallentine's office about it. For some reason, I think this means they're giving me iron. Dr. Wardle comes back to say that Dr. Wallentine's office would like me to have the transfusion today, since I'm already in the hospital all hooked up. I call Steve to say I'll be another hour or so. This turns out to be a mistake, because when he comes, I am still waiting for Julie to come get a blood sample. I tell him I'll call when I'm really done, poor man.

The blood sample Julie takes is somehow messed up, so she comes to take another one while I'm on the phone with Mom. My mother says no wonder I need a transfusion, since they keep drawing blood from me. By this time I have realized that they mean a blood transfusion -- two units. It is now after lunch, and I decide that a shower could use up a good half hour if I'm slow. This is ironic, because I have a hard time understanding how anyone can stay in the shower for more than 10 minutes. Brittney brings me towels and the plastic thing to cover up the IV in my port. I do my best to be very slow, but it is hard, and I barely make it last 30 minutes by lotioning extremely thoroughly while sitting in the rocking chair.

Cameron comes to ask if I want a walk. We make about seven rounds of the floor while we talk about books. When I get back to the bed, I can't stand the thought of lying down, so I sit cross-legged and read Paula's book. After a while I realize that I'm rubbing my head and the pages and blankets are covered with hair. I thought I was done losing hair, but I guess not. My eyebrows are looking a little strange too. When I've finished the book, it is only 2 p.m. and there is no sign that my transfusion units have come. I can't stand the thought of starting another book -- a strange feeling for me. Out of desperation, I read the packet of information I was given Saturday night when I came up from the ER. The blurb about the gift shop says it has games. I call down, and the ladies say they do, and that lots of people come down in their gowns while pushing IV poles.

I get my wallet, and Brittney volunteers to go with me. Luckily I still have the pin Kara brought me on Sunday to pin the back of my gown closed so I feel more modest. We take the elevator down to the lobby and have fun exclaiming over all the things in the gift shop. We find the playing cards at last, and I buy some. The ladies at the counter recognize my voice, I guess, as being the one who called. Just my luck, while we're walking back to the elevator, I stub my pinky toe on my IV pole wheels and it dislocates. OUCH! Brittney wants to know what's up, so I explain all about breaking the toes in high school dance and how they dislocate when I stub them and that the best way to get them back in place is to put on a shoe and hobble around grimacing and how Sunitha says I should have them fused.

When we get back upstairs, Mom and Dad are waiting in my room! I get my boot on first of all and walk around grimacing, and happily for all, my toe pops back in within four laps. As always, I am immensely relieved. Mom and Dad and I jabber for about an hour and after they leave I try to play solitaire with myself. I find myself cheating a lot, but I suppose it doesn't really matter. At five, my first unit of blood finally appears. Julie gets me all hooked up, but looking at my IV tube with blood flowing through it unnerves me, so I'm glad when dinner comes and I can ignore it.

I try making up card games but I keep getting mixed up in my rules. The new shift comes on, and my PCT's name is Janet. We decide to be twins. Katie is my nurse, and we have just as much fun talking as I did with the other ones I've had this weekend. How can they be so nice to everyone? I wonder if it's hard to do. The first unit of blood is finally done at 7:45. Janet goes down to get the second, and when she comes back, she says she brought blood from a lush-haired 18-year-old runner. Just what I need!

The debate has now begun about whether I should stay overnight, since this blood unit won't be done until 11:30 or so. I call Steve and he says he'll come get me, even if it's after midnight. Hooray! I don't think I could stand to be here another night. I find Hunt for Red October on TV and resort to playing Phase 10 with myself. Katie says she'll get all the papers ready so I can be on the fast track out of here when I'm done.

I wonder if Steve wants to come watch with me, but he said on the phone that they were watching something as a reward for helping clean the toy room. So I just wait. And figure out sets and runs, and tell Janet that's why it's best to play yourself, because then you always win. Sure enough, the blood is all in by 11:30, and I start getting dressed and signing papers. I call Steve when Katie is getting things ready to flush my port and take out the access needle. Hooray! Janet goes to get a wheelchair while I fill out a thank you note to all the great people who've helped me. While they're both busy, I find a note they've tucked in my book. Katie writes: "It was a pleasure being your nurse tonight. I just wish you could've hung out a little longer. :) Good luck & take care. Have a great New Year." Janet's contribution: "Thanks for being such a great & pleasant patient. I hope the next time I see ya it will be in the Mall."

Steve is waiting just outside the revolving doors, and we're off. My weekend adventure at the hospital is over, and I'm just glad I won't have to do it again next weekend.

:) I can't believe it's Tuesday already.

Catch-up Day! (or is it ketchup? or catsup?) One of my great-great-great grandmothers used to say, "The hurrier I do, the behinder I get." I'd have to say that pretty much sums up my life. When I feel good, I get too busy to write anything, and when I feel yucky, nothing happens to write about.

1. Have had lots of energy some days, not so much other days. Took kids boot shopping (2 at a time) last Saturday, just in time for the SNOW! Also found some wonderful items on sale, about which I can say no more, other than a) now I don't have to make them and b) would you like fuzzy or silky? Sariah, Haruka, Bethany, and Reuben had a wrapping party and now we have things under the tree!

2. Finally managed to practice for the Christmas program. Marveled at how much I love my organ shoes; it is soooo much easier to play with them than the others I was using. Decided that whatever comes out of the organ on Sunday is going to have to do, because a) it is a soft gentle thing and not up to shaking the building, and b) the choir men's section is so awesome that they will probably cover it up anyway. Tried to practice one day with Reuben, and he had enough fun that I couldn't really hear what I was playing. Oh, well. Maybe he'll grow up someday to be an organist.

Not much ketchup today. Sorry.

Jaren gave us tickets to the MoTab/Orch@TempleSquare concert on Thursday evening. I felt okay and rested and played Go Fish and Landlocked with Reuben so that I would have enough energy for it. We also worked on his presents for Christmas which I'm not supposed to say anything about because we had a family meeting and had everyone promise not to ask nosy questions or tell scintillating facts about presents. So mum's the word, but he is getting very good at using scissors.

Dashed off at 6, having finally located the pizza gift card (Thank you!) for the stay-at-homers. We left the freeway in Murray and took Trax, and walked quickly and made it to the Conference Center in time. Jane sat next to us, which made everything more fun than it already was. The concert was fabulous! Great choices of music, well-done arrangements, fantastic guest artists (Brian Stokes Mitchell and Edward K. Herrmann). My personal favorites were 1) the arrangement of "The Friendly Beasts" by Mack Wilberg, featuring Mr. Mitchell singing in a different voice for each animal; 2) Mr. Herrmann's recital of the Longfellow's Christmas, which explained about the "then pealed the bells more loud and deep" hymn; and 3) Richard Elliott's organ rendition of "Go Tell it on the Mountain" with the melody and harmony in the pedal part, during which time he looked as though he were doing a fast tap routine on the pedalboard.

Joseph has wrapped the presents Steve and I bought last week (except his own, of course) and Nathaniel has set up our own puzzle-table in the livingroom. We put up the Christmas decorations last Monday for Family Home Evening (Thanks, Marci & Chad, for the twinkle lights), and afterward Steve said how much he liked our no-nonsense done-in-two-hours style of decorating. The kids have all been playing with the Playmobil nativity set, especially Reuben, who is fascinated by the wise men and their camel.

Still feeling yucky and achy. Thank goodness for couches, blankets, and good books.

Sleep and I are having an argument, apparently. Last Wednesday night I felt like I was awake all night. I didn't come to consciousness and realize that I had been asleep, and I kept thinking things for what seemed hours on end. And here I am again at 4:45 a.m., having lain awake for an hour or so already.

Paul took me to chemo on Wednesday, and we had a nice long time in the waiting room. Since my doctors don't go in for woodworking or amateur radio or scientific magazines, Paul decided to sleep in his chair while looking like he was listening politely to a long and rather uninteresting anecdote. I worked on the puzzle. It was a bit frustrating, because I kept needing edge pieces that I couldn't find and got annoyed that someone hadn't sorted out and fitted together all the edge pieces first, as puzzledoers obviously ought to do!

We saw the doctor at 11 a.m. (9:30 appointment) because there had been a couple of emergencies, one involving fluid in lungs which then collapsed. It struck me that I am having an easy time dealing with a nasty disease. This was confirmed by Dr. W, who asked if I'd noticed all sorts of different symptoms (including more lumps). Quite shocking how a 70% chance of recovery suddenly seemed not enough.

I haven't felt energetic this time. I've had the two achy days and today feels like this will be the third. I wonder if this is what chronic pain feels like? Continually reminding yourself to just put up with it, and pushing it back to a corner of your mind and doing other things until it surprises you by being out in the center again and you realize that you did actually watch it creep back in while pretending not to. Maybe that's what woke me up this morning, or perhaps the realisation that my pillow had gone hard, or that I was really thirsty.

Last night we went to Paula's and I was unpleasantly surprised at the nasty chalky bitterness of the broccoli and the strange metallic tinge to the dip. Even though I think I'm prepared, that I know food isn't going to taste good, I still get a jolt when I bite something and it's true. Perversely, the carrots and baby tomatoes did taste good, which made up for it.

I have become quite grateful for chairs. It felt good to put my body into one of the black chairs in the family room and pull a blanket over me and knit. And last night, I really enjoyed the feeling of surrendering the business of supporting myself to something firm but soft! Hooray for chairs!

Woke up this morning at 4 to use the faciilites and stand in the bathroom while Reuben used them too, which apparently has become one of my jobs as a mother. Since it is now 5 a.m. and I'm still awake, I'll tell you what has been going through my mind.

I've noticed lately that my body doesn't last as long feeling good as I think it used to. I have frequent head and back and leg aches. Case in point: yesterday I went shopping with Steve after dinner. Paul had come over with Haruka and was holding a session of the "I Hate Mathematics Association", with members Bethany and Abbie in attendance, and Jason was here to make people stop fighting, so I felt that it was okay to leave them to it. I sometimes feel like I'm taking advantage of people when I leave my noisy brood with them.

We were looking for cheap frames for Steve's classes to use to make Christmas presents with, so we started with Honk's and progressed through BigLots and RiteAid Pharmacy, took a detour to Maceys for breakfast food to gear up for chemo week, and ended at Dollar Tree, where we finally found frames for less than $6 apiece. Three cheers for dollar stores!

Since I had been ignoring the pain in my legs since RiteAid, I opted out of waiting in the cashier line and waited in the car instead. When we got home, I went up and lay down on my bed with my feet propped up on the wall. I followed Paul's advice and made sure to take a book, my latest discovery: Jacqueline Winspear, a different kind of mystery writer.

As I was jotting these things in a notebook, since I've forgotten where I put my journal, Steve mumbled in his sleep, something about me being brave. I don't feel brave. I feel unwilling and grumpy and apprehensive about chemo today, but I will get in Bapu's car at nine a.m. and check in at the desk, and admire the nurses' "Chemo Sucks" badges, and try to make jokes and work on the puzzle in the office. I won't kick and scream at the nurses who stick needles in Penelope's belly, and I won't cry to Dr. W (although I am now) and I will smile at the nurses and their tall IV pole full of plastic bags of clear liquid that drip into my vein. I will knit on Haruka's lime green hat with hot pink llamas, and I will fall asleep when the Benedryl drips in. And if I'm done in time, I'll get to have lunch with SueZann. And next week after I'm done feeling yucky, and next month when I have my last treatment, and next year and the years after that when I'm still alive, I'll think this was all worth it.

I think I'll tape my big heart card from the Young Women up on my wall today and look at it a lot.

I am sitting on the edge of the tub with my sweats pushed up and my feet covering the drain, which Reuben insists "has sharp teeth". He won't bathe unless the drain is covered, so I'm writing and eating my granola and yogurt.

Thanksgiving was very fun. We made pumpkin, peach, cherry, banana cream, lemon meringue and apple pie and a fruit tart and rolls and two kinds of cranberry stuff and exotic juice and fruit salad. Then we went to Mom's and I helped watch the two kinds of dressing in the downstairs oven while others finished up preparations upstairs. The rolls turned out nicely, since Steve prevented me from my usual blunder of adding too much flour.

We ate and talked and then played games and talked and then ate dessert and talked and played more games.

Sheila, Barney, and the kids came Friday. Since Crystal (now with short hair) and Camille turn 9 soon, and Haruka turns 18 soon, we celebrated by going ice skating on Saturday. I always forget how in the interim between visits to the rink and then have to relearn. The Sakizzie kids and Haruka did very well for it being their first time, and we only had one fall that caused tears. Reuben even skated about 2 times around with Steve or I holding him up by the armpits. Joe chose not to come, which puzzled me, because he loved the skating lessons the kids did a couple of summers ago. Afterwards, Grandma had hot chocolate, and then we had the birthday treats of ice cream and little Italian cookies called Pizzelle, which looked like pressed lace. Elisabeth and I talked knitting and James, Steve, Paul, Nathaniel, and I played a couple of games of Scrabble. It's so fun to have Paul here!

Steve had found his recommend, so we went to the temple Saturday morning while Paul sat at our house and shuffled kids to Grandma's for breakfast and played with LED lights and batteries.

I had called the temple to ask about my hairdon't and whether I should wear a white something to make my head more presentable. the woman I spoke with went and asked someone, and returned with the verdict that I could do what I felt comfortable with -- bare head or covered head, but to make sure the covering was white. I went bareheaded.

Why was this easier than going to church bareheaded? Reuben usually wants to wear my hat during sacrament meeting, but I haven't let him. Mild hypocrisy, I'm sure. I was bareheaded during Joe's Indian-and-pilgrim program last week because the hat I'd chosen had a floppy brim that made it hard to see.

Well, Reuben wants to make biscuits now that he's dry and clothed, so off we go!