My white cells have rallied together, just as I asked them to, and went forth and multiplied enough to earn me my walking papers from the hospital. Let Freedom Ring! I'm feeling patriotic a little early. :-)
My Irish Team just did their rounds and I'm very happy to see young Dr. DunLevey is still on my team. Dr. Wilson was with them today. He's the world-renowned lymphoma specialist and he doesn't usually attend rounds with the doctors. He had a medical revelation today that he is willing to wager will keep me out of the hospital next time. I don't really like to talk about this, and I apologize if I make people queasy, but let me explain as nicely as possible. Every time I finish chemo I end up with really bad diarrhea that gets worse as the week progresses, which is why I end up so dehydrated. When certain people ask what the worst part of having cancer is, I say it's the horrible diarrhea, and it truly is. I will be a happy, happy, happy person when I have normal bowel movements again. All of that being said, Dr. Wilson thinks that my diarrhea might be caused by [some medical terminology I don't quite get], but that giving me a certain antibiotic three times a day starting on day seven of my chemo treatment (right after I finish) should stop that problem and keep me out of the hospital. I'm willing to try and see if it works.
I won't know what to do with myself if I'm neutropenic at home. I'll still have low white cells and won't be able to leave the house, but I won't have the high fever and diarrhea (if his plan works). This would be a new thing for me. No IV poles to drag around. No nurses asking really dumb questions. More sleep! Cable television and access to my own DVDs! No really bad hospital food. Oh, the possibilities.
I hope everyone has a good holiday weekend if you're traveling out of town and even if you're not. Grandma Erickson's birthday is July 1 and we'll be celebrating our birthday's together at a combined birthday party on July 4 (since I'll be feeling better next week). Happy Birthday, Grandma!
Friday, June 29, 2007
Wednesday, June 27, 2007
More Adventures from the Hospital
Today is day four of my hospitalization, as I arrived Sunday evening. I was traumatized once again with the IV placement. I asked the nurse for some ativan because I was so anxious, but she told me it wasn't necessary and made me feel like it wasn't even an option. They had to stick me a second time and I was not happy at all. Mike noticed that I was miserable and I think he'll push them really hard next time to give me the ativan. The social worker today that if I ask for it, they should give it to me. Next time, I can call him and he can advocate for me.
I had another trauma yesterday when the same IV caused my arm to swell dramatically and they had to remove it. I'm not sure why, but I appreciated that they sent me to procedures to have another IV installed with an ultrasound. They got it on the first try - and minimal pain for me. I wonder if I can beg for them to install my IVs every time. They aren't open on Sunday's, so that could be a problem.
I also had a blood transfusion yesterday and am in the middle of another one today because my cells are so low. I just started today's transfusion a few minutes ago and it should take about three hours. I still get nervous when I get transfusions just because of what it is. It doesn't hurt, but it's weird seeing this dark red stuff in my IV coming at me.
There was some miscommunication earlier today. Someone put orders in to install a PICC line, which doesn't make sense because I'm leaving on Friday. A PICC line is a semi-permanent line that would allow me to by-pass the IVs, but they would remove the PICC line probably before I left the hospital. I do start my fourth chemo round next Friday, so it would have made sense to install a PICC line on Friday. However, I usually have a different type of line installed - an IJ line and I've been pretty happy with that. After talking to my team, we've decided to stick with the IJ line. It seems now that someone (they don't even know wh0) requested the PICC line and it was a mistake.
My Irish Team has changed personnel since my last visit here. I was expecting new people in July, but not this early. The only Irishman remaining is Dr. Byrd as the cute one, Dr. DunLevey, seems to have moved on to another hospital. I feel like I accomplished something good this morning because I made them laugh! No one ever jokes, but they laughed. Dr. Byrd asked if I was having whole fat (whole milk products instead of skim) and I replied that I haven't had any skim milk products since April. I also said that I've been eating a lot of steel cut oats, which the nurse practitioner, Doug Matthews recommended. Everyone perked up and seemed really interested in what they were, since no one had heard of them. They're better than oatmeal because it's less processed. Dr. Byrd said it's "Irish porridge," to which I agreed and said I add a little butter, brown sugar, and raisins because raisins have potassium. That's when they laughed! My potassium's been low so they were impressed by my knowledge. Hey, it's something to me!
My mother-in-law, Gail has been here at the hospital with me everyday this week. I asked Mike to be here for the PICC line consultation (that didn't happen in the end) so she's at home today cleaning our house. I'm extremely touched that she'd clean our house for us. She's done so much and I'm very appreciative. My brother-in-law, Brian, arrives tonight but I probably won't see him until tomorrow since he arrives so late. I ususally fall asleep by 10pm and his plane doesn't land at BWI until 8:30. I'd rather seem him tomorrow and get some rest tonight. Mike's here today doing his work from the hospital. He drove all the way to his office (an hour's drive) to get his laptop so he could be here with me. I was really nervous about the PICC line procedure, so I asked him to stay. By the time we figured out about the PICC line mistake, Mike was already back at the hospital. He can still do his work here, though.
I had another trauma yesterday when the same IV caused my arm to swell dramatically and they had to remove it. I'm not sure why, but I appreciated that they sent me to procedures to have another IV installed with an ultrasound. They got it on the first try - and minimal pain for me. I wonder if I can beg for them to install my IVs every time. They aren't open on Sunday's, so that could be a problem.
I also had a blood transfusion yesterday and am in the middle of another one today because my cells are so low. I just started today's transfusion a few minutes ago and it should take about three hours. I still get nervous when I get transfusions just because of what it is. It doesn't hurt, but it's weird seeing this dark red stuff in my IV coming at me.
There was some miscommunication earlier today. Someone put orders in to install a PICC line, which doesn't make sense because I'm leaving on Friday. A PICC line is a semi-permanent line that would allow me to by-pass the IVs, but they would remove the PICC line probably before I left the hospital. I do start my fourth chemo round next Friday, so it would have made sense to install a PICC line on Friday. However, I usually have a different type of line installed - an IJ line and I've been pretty happy with that. After talking to my team, we've decided to stick with the IJ line. It seems now that someone (they don't even know wh0) requested the PICC line and it was a mistake.
My Irish Team has changed personnel since my last visit here. I was expecting new people in July, but not this early. The only Irishman remaining is Dr. Byrd as the cute one, Dr. DunLevey, seems to have moved on to another hospital. I feel like I accomplished something good this morning because I made them laugh! No one ever jokes, but they laughed. Dr. Byrd asked if I was having whole fat (whole milk products instead of skim) and I replied that I haven't had any skim milk products since April. I also said that I've been eating a lot of steel cut oats, which the nurse practitioner, Doug Matthews recommended. Everyone perked up and seemed really interested in what they were, since no one had heard of them. They're better than oatmeal because it's less processed. Dr. Byrd said it's "Irish porridge," to which I agreed and said I add a little butter, brown sugar, and raisins because raisins have potassium. That's when they laughed! My potassium's been low so they were impressed by my knowledge. Hey, it's something to me!
My mother-in-law, Gail has been here at the hospital with me everyday this week. I asked Mike to be here for the PICC line consultation (that didn't happen in the end) so she's at home today cleaning our house. I'm extremely touched that she'd clean our house for us. She's done so much and I'm very appreciative. My brother-in-law, Brian, arrives tonight but I probably won't see him until tomorrow since he arrives so late. I ususally fall asleep by 10pm and his plane doesn't land at BWI until 8:30. I'd rather seem him tomorrow and get some rest tonight. Mike's here today doing his work from the hospital. He drove all the way to his office (an hour's drive) to get his laptop so he could be here with me. I was really nervous about the PICC line procedure, so I asked him to stay. By the time we figured out about the PICC line mistake, Mike was already back at the hospital. He can still do his work here, though.
Sunday, June 24, 2007
Uh oh
I took my temperature at 1pm and it was 100.3. My instructions from NIH say to check my temperature again in one hour and if it's 100.4 to call for immediate assistance. I'm watching the clock carefully. If I do go to NIH, I'd rather go now than have a night nurse try to put my IV in because the day nurses are much more experienced.
We'll keep you posted.
We'll keep you posted.
Friday, June 22, 2007
So Far, So Good
Well, it's Friday and I made one trip to NIH just to the phlebotomy department. I've been drinking and drinking my liquids so I feel pretty good right now. Keith drove me to NIH and then we met Kathy at Quiznos for lunch. Afterwards, we came back to the house and they helped me clean a bit for my mother-in-law's arrival tomorrow. I had a bit of energy after running at lunch around so I straightened out my bookcases while they cleaned. I still felt decent when Mike came home so Keith joined us for dinner at a Japanese steakhouse. I drank even more water and some green tea with dinner. So far I still feel good. Tonight will be a test. I have my glass of water and I'll make sure I have water in my room when I go to bed because I tend to get thirsty in the middle of the night.
I'm doing all this in hopes that I won't need to go to the hospital, but I'm prepared if I must. If anything, I'd like to delay the trip for as long as possible. The first cycle, I didn't go to the hospital until Sunday but I've had to go in earlier each time. It could be because I was too stubborn (stupid) to stay hydrated prior to when I start feeling bad. By the time I feel dehydrated, it's usually way too late and I need some medical attention. Everything still tastes medicine-y, but I am going to say, "So what?" and eat/drink anyway. It's for my health.
Dinner was really good. I couldn't eat the salad, but I ate my vegetables with glee. It was so nice eating cooked carrots, broccoli, and zucchini. Yummy. I saw a recipe today online for a salad with goat cheese and walnuts that made my mouth water. As soon as the doctor's clear me to eat salad and goat cheese, I'm making it. I adore goat cheese on my salad and it's been really hard not to eat it these last few months. I've been watching a lot of cooking shows lately (Take Home Chef) and it's been torture to see the delectable meals the chef whips up for these people. I am truly jealous! I hope when I feel well that I get picked up by the Take Home Chef. I deserve a good meal more than the people on his show. It's too bad that it's filmed in California. Oh well.
Here's to a good day tomorrow. I'm going to take it easy the rest of tonight and tomorrow as well. Rest is a good thing. Mike is going to weed the garden tomorrow while I relax. He is such a sweetie.
I'm doing all this in hopes that I won't need to go to the hospital, but I'm prepared if I must. If anything, I'd like to delay the trip for as long as possible. The first cycle, I didn't go to the hospital until Sunday but I've had to go in earlier each time. It could be because I was too stubborn (stupid) to stay hydrated prior to when I start feeling bad. By the time I feel dehydrated, it's usually way too late and I need some medical attention. Everything still tastes medicine-y, but I am going to say, "So what?" and eat/drink anyway. It's for my health.
Dinner was really good. I couldn't eat the salad, but I ate my vegetables with glee. It was so nice eating cooked carrots, broccoli, and zucchini. Yummy. I saw a recipe today online for a salad with goat cheese and walnuts that made my mouth water. As soon as the doctor's clear me to eat salad and goat cheese, I'm making it. I adore goat cheese on my salad and it's been really hard not to eat it these last few months. I've been watching a lot of cooking shows lately (Take Home Chef) and it's been torture to see the delectable meals the chef whips up for these people. I am truly jealous! I hope when I feel well that I get picked up by the Take Home Chef. I deserve a good meal more than the people on his show. It's too bad that it's filmed in California. Oh well.
Here's to a good day tomorrow. I'm going to take it easy the rest of tonight and tomorrow as well. Rest is a good thing. Mike is going to weed the garden tomorrow while I relax. He is such a sweetie.
Wednesday, June 20, 2007
Jonkanoo Pepper Sauce
Don't ask me about the title of this blog, I just like it. I've been staring at this bottle of Seriously Hot Jamaican hot sauce on my dining room table and just like the name on the bottle. Granted, I can't have any hot sauce because it would probably tear up my stomach. We invited my parents, Michael, and Shaunda over for Father's Day on Sunday and Shaunda needed the hot sauce for her turkey burger. I seriously miss flavor on and in my foods, but I'm dealing with it. Every once in a while I will cheat and eat something mildly spicy just for a little taste, but I am very good overall. I'm supposed to drastically reduce my caffeine intake because it can dehydrate me, and I've done a very good job with that. I used to have a Grande Skim Chai every morning before work and now I probably have a Chai every two to three weeks, but only during my good week. I haven't had a caffeinated soda since March or April. I had a sip once, but it didn't even taste good. It's better to load up on water, Gatorade, lemonade, or other non-caffeinated beverages. My lactose-free milk is also really good right now (and helps with stomach problems too).
I met Michael and Mom at Lowes tonight to help pick out fixtures for my parents bathroom. We managed to select new flooring and wall tile, a new vanity, a new toilet, a new medicine cabinet, and lights. Unfortunately, my stomach decided to act up on me so I had to head home after about an hour. I still need to take my Zofran and Ativan, but I wanted to blog first. I also start another round of shots tonight and I'm really looking forward to it. Hopefully, Mike won't hurt me like he did last time! Youch!
I need to keep an eye on myself for the next couple of days, especially in staying hydrated. I also need to keep a close eye on my temperature to make sure I don't get a fever. I tend to neglect that side of things, but I have figured out pretty quickly in the past when I did have a fever. I remember one late-night run to the hospital last month when my temperature hit over 100 degrees. I must finish packing my hospital bag tomorrow - just in case. I already have a couple of sets of pajamas, but I need some other necessities and a couple of books/magazines. I usually don't feel up to reading in the hospital, but it does get pretty boring in my hospital bed.
I am so glad that I am now more than halfway through all of my chemo cycles now. I should only have two more rounds to go and then I can get on with my future full of CT scans every few months for the next few years. I fear that life after chemo will be the toughest for me because then I can really start worrying about things. These past few months I have lived one day at a time, just trying to push the worries from my head and get through this experience. When I no longer have a chemo schedule, that's when I fear the bad thoughts will creep into my head. I plan on joining a support group very soon to deal with this. I've started looking already, but I really would prefer a lymphoma support group to deal with my specific cancer. I also don't want to be with a bunch of depressed people discussing death and dying. I want to live and I want to be able to talk about living with this disease and moving forward.
I'm hanging in there - one day at a time.
I met Michael and Mom at Lowes tonight to help pick out fixtures for my parents bathroom. We managed to select new flooring and wall tile, a new vanity, a new toilet, a new medicine cabinet, and lights. Unfortunately, my stomach decided to act up on me so I had to head home after about an hour. I still need to take my Zofran and Ativan, but I wanted to blog first. I also start another round of shots tonight and I'm really looking forward to it. Hopefully, Mike won't hurt me like he did last time! Youch!
I need to keep an eye on myself for the next couple of days, especially in staying hydrated. I also need to keep a close eye on my temperature to make sure I don't get a fever. I tend to neglect that side of things, but I have figured out pretty quickly in the past when I did have a fever. I remember one late-night run to the hospital last month when my temperature hit over 100 degrees. I must finish packing my hospital bag tomorrow - just in case. I already have a couple of sets of pajamas, but I need some other necessities and a couple of books/magazines. I usually don't feel up to reading in the hospital, but it does get pretty boring in my hospital bed.
I am so glad that I am now more than halfway through all of my chemo cycles now. I should only have two more rounds to go and then I can get on with my future full of CT scans every few months for the next few years. I fear that life after chemo will be the toughest for me because then I can really start worrying about things. These past few months I have lived one day at a time, just trying to push the worries from my head and get through this experience. When I no longer have a chemo schedule, that's when I fear the bad thoughts will creep into my head. I plan on joining a support group very soon to deal with this. I've started looking already, but I really would prefer a lymphoma support group to deal with my specific cancer. I also don't want to be with a bunch of depressed people discussing death and dying. I want to live and I want to be able to talk about living with this disease and moving forward.
I'm hanging in there - one day at a time.
Tuesday, June 19, 2007
Two More to Go
I finished round four today and Michael took me to NIH so Mike could stay at work. My stomach has already started rebelling against me and I woke up several times with nausea in the middle of the night. I normally take Zofran to help with the nausea, but I also have Compazine for the break-through nausea. Tonight I may have to break out the Ativan for the nausea because it's supposed to be a little more helpful than both of those drugs. I've been drinking my beverages today in an attempt to stay hydrated early (and avoid an overnight visit to the hospital and multiple IVs).
I haven't blogged in a while because of a couple of bad-luck incidents that have brought me down. Last week, I went to lunch with Gina, Michael, and Doug (his business partner) and as Gina and I were leaving the Silver Diner parking lot in Rockville, I backed our 4-month old RAV-4 into a small concrete pole that I never even saw until I hit it. I managed to dent the bumper and pull out the top part of the car to the tune of $1300. Michael talked his mechanic down to $900, but we're going to wait to repair it for now. My mother-in-law arrives on Saturday and we'll need a car for her while she's here. I am so embarrassed about this and feel really horrible about wrecking the car. I'm almost afraid to drive it now because I'm worried I'll hit something else. This really has me feeling down. Mike's been great throughout all of this, but I still feel bad for my expensive mistake.
I haven't blogged in a while because of a couple of bad-luck incidents that have brought me down. Last week, I went to lunch with Gina, Michael, and Doug (his business partner) and as Gina and I were leaving the Silver Diner parking lot in Rockville, I backed our 4-month old RAV-4 into a small concrete pole that I never even saw until I hit it. I managed to dent the bumper and pull out the top part of the car to the tune of $1300. Michael talked his mechanic down to $900, but we're going to wait to repair it for now. My mother-in-law arrives on Saturday and we'll need a car for her while she's here. I am so embarrassed about this and feel really horrible about wrecking the car. I'm almost afraid to drive it now because I'm worried I'll hit something else. This really has me feeling down. Mike's been great throughout all of this, but I still feel bad for my expensive mistake.
Saturday, June 16, 2007
Feeling Groovy
I've had a wonderful couple of days visiting with my dear cousin, Gina. My parents, Michael, and Shaunda came over for dinner last night (country-fried steak). Mom and Dad and Shaunda left after dinner. Mom and Dad went home, but Shaunda had tickets to Shear Madness at the Kennedy Center with some of her friends, so she left too. Michael, Gina, and I played Mexican Train Dominoes while Mike worked on fixing Gina's laptop. Mexican Train Dominoes is so much fun that Shaunda came back over after her play and we were all up really late playing. I went to bed around 1:30am just because I knew my body needed the rest, but everyone else was up until 3:30am. I didn't want to go to bed because I wanted to spend some more time with Gina before she left, but I seriously needed to rest. I bought Michael his own Dominoes set this afternoon so he could play on his own. This game is a ton of fun.
This morning my neighbor had a moving/yard sale and we were able to sell a few things and make a little extra money. Mike handled most of our sales while Michael, Shaunda, and I took Gina to the airport this morning. Frank and Sophie made crepes for breakfast since Gina had never eaten them before and she really liked them (especially with a little nutella spread). Michael and Shaunda took me to the NIH for my pit stop after the airport and everything went well.
Gina worked really hard on making sure I drink my water and I've been obeying orders, even now that she's gone. I have to admit that drinking all of this water does make me feel good. Gina drinks water all day long so she really is a good influence on me. I don't know if I'll ever be a whirlwind of activity like she is (she got up at 6am this morning after going to bed around 4am), but she definitely makes me have a little more energy to do things around the house. I hope to carry this positive energy into next week.
Speaking of next week, my mother-in-law and brother-in-law are coming to visit. Gail is coming on June 22nd and Brian arrives on June 27th. Unfortunately, I tend to become neutropenic by next Saturday/Sunday and they haven't seen me since I was diagnosed. I hope they aren't too shocked to see me, first, with no hair (Gina shaved it even shorter last night), and second, not feeling well. Gina saw me on a good week when I feel really good and I think she might have been a little surprised to see me actually looking so well. I just hope Gail is prepared for the sick me in the hospital. Mike pointed out that when I don't feel well he can tell because I tend to get really quiet. He's right. Normally, I'm talkative and chatty, but when I'm neutropenic or on my worst white count day, I don't even feel like talking and would prefer to just lie down in my hospital bed in silence. I'm really glad they are coming to visit because this visit will be good for both of us.
This morning my neighbor had a moving/yard sale and we were able to sell a few things and make a little extra money. Mike handled most of our sales while Michael, Shaunda, and I took Gina to the airport this morning. Frank and Sophie made crepes for breakfast since Gina had never eaten them before and she really liked them (especially with a little nutella spread). Michael and Shaunda took me to the NIH for my pit stop after the airport and everything went well.
Gina worked really hard on making sure I drink my water and I've been obeying orders, even now that she's gone. I have to admit that drinking all of this water does make me feel good. Gina drinks water all day long so she really is a good influence on me. I don't know if I'll ever be a whirlwind of activity like she is (she got up at 6am this morning after going to bed around 4am), but she definitely makes me have a little more energy to do things around the house. I hope to carry this positive energy into next week.
Speaking of next week, my mother-in-law and brother-in-law are coming to visit. Gail is coming on June 22nd and Brian arrives on June 27th. Unfortunately, I tend to become neutropenic by next Saturday/Sunday and they haven't seen me since I was diagnosed. I hope they aren't too shocked to see me, first, with no hair (Gina shaved it even shorter last night), and second, not feeling well. Gina saw me on a good week when I feel really good and I think she might have been a little surprised to see me actually looking so well. I just hope Gail is prepared for the sick me in the hospital. Mike pointed out that when I don't feel well he can tell because I tend to get really quiet. He's right. Normally, I'm talkative and chatty, but when I'm neutropenic or on my worst white count day, I don't even feel like talking and would prefer to just lie down in my hospital bed in silence. I'm really glad they are coming to visit because this visit will be good for both of us.
Friday, June 15, 2007
Texas Trouble
Gina may never visit me again after her horrible experience on Southwest Airlines the other night. She arrived in Corpus Christi, TX around 10am for her flight. She bounced around from Houston to Dallas Love Field to Arkansas before ever heading up to BWI. Unfortunately, bad weather blew in and her flight circled the airport for an hour before being diverted to Norfolk,
VA to refuel. Her cell phone also died and she was able to borrow a phone from a stranger to relay messages to me and Michael (who were already at the airport). We hung out for hours in the cell phone waiting area and also grabbed something to eat up the street at Royal Farms. I also tried to find out information at the airport about her flight, but I had to stand in line for 30 minutes with the other passengers just to ask my question. Everyone was miserable, but Gina finally arrived on the ground at 10pm - only 3 hours after she was supposed to be here.
Gina has been a whirlwind of activity since she arrived. She made breakfast burritos for Mike, Michael, Doug, and me yesterday morning (all before 6am). She also made a cheesecake for last night's dinner. She had already started last night's dinner on Wednesday so she wouldn't have to worry about cooking it yesterday. Tonight, she's making country-fried streak, vegetable, homemade biscuits, and I don't know what else. She also cleaned my kitchen and vacuumed. I also forgot, she organized my messy pantry. I don't think I'll let her leave!
Mike sold his truck yesterday (thanks to me and Gina dropping of the truck yesterday and getting the appraisal process started). He is very happy he won't have to deal with it anymore and can now move forward and buy his friend's truck. Then he can take his boat out soon. His mom, Gail, and his brother, Brian are coming in two weeks and they want to go out in the boat. I'll definitely be staying home because I usually end up in the hospital that week, or just neutropenic so will be too sick to do that stuff.
I'm at NIH today starting Round 4, and whether she likes it or not, Pricsilla is GOING DOWN! I haven't started chemo yet, but I'm waiting to start. Gina had to get my presnisone prescription from the pharmacy before I started, but now we're waiting for something else and I don't know what that is.
I have a CT scan scheduled for July2 and I'll start round 5 on July 6. After my last round, I'll have a PET scan to see how much of my tumor is gone. After I'm done with all chemo, I'll have CT scans every 3 months for the first year and then every 4 months for the 2nd year.
VA to refuel. Her cell phone also died and she was able to borrow a phone from a stranger to relay messages to me and Michael (who were already at the airport). We hung out for hours in the cell phone waiting area and also grabbed something to eat up the street at Royal Farms. I also tried to find out information at the airport about her flight, but I had to stand in line for 30 minutes with the other passengers just to ask my question. Everyone was miserable, but Gina finally arrived on the ground at 10pm - only 3 hours after she was supposed to be here.
Gina has been a whirlwind of activity since she arrived. She made breakfast burritos for Mike, Michael, Doug, and me yesterday morning (all before 6am). She also made a cheesecake for last night's dinner. She had already started last night's dinner on Wednesday so she wouldn't have to worry about cooking it yesterday. Tonight, she's making country-fried streak, vegetable, homemade biscuits, and I don't know what else. She also cleaned my kitchen and vacuumed. I also forgot, she organized my messy pantry. I don't think I'll let her leave!
Mike sold his truck yesterday (thanks to me and Gina dropping of the truck yesterday and getting the appraisal process started). He is very happy he won't have to deal with it anymore and can now move forward and buy his friend's truck. Then he can take his boat out soon. His mom, Gail, and his brother, Brian are coming in two weeks and they want to go out in the boat. I'll definitely be staying home because I usually end up in the hospital that week, or just neutropenic so will be too sick to do that stuff.
I'm at NIH today starting Round 4, and whether she likes it or not, Pricsilla is GOING DOWN! I haven't started chemo yet, but I'm waiting to start. Gina had to get my presnisone prescription from the pharmacy before I started, but now we're waiting for something else and I don't know what that is.
I have a CT scan scheduled for July2 and I'll start round 5 on July 6. After my last round, I'll have a PET scan to see how much of my tumor is gone. After I'm done with all chemo, I'll have CT scans every 3 months for the first year and then every 4 months for the 2nd year.
Monday, June 11, 2007
Potassium
I'm home from NIH and the doctor called to tell me that I'm low on Potassium so I need a supplement. I looked at a list of potassium-rich foods and it's no wonder I'm low: dried fruits, fresh fruits (bananas, strawberries, watermelon, cantaloupe, oranges), fresh vegetables (beets, greens, spinach, peas, tomatoes, mushrooms), fresh meats (turkey, fish, beef), fresh juices (orange), canned juices (grapefruit, prune, apricot). I can't eat most of the fresh fruits, but I should start eating bananas. I definitely can't handle eating the fresh vegetables when my stomach is upset. Orange juice is high in acid, which can upset my stomach, and so can grapefruit. I'm not touching prune juice. It's very hard to get potassium in my diet when everything is against me right now. Potassium pills are huge too - like horse pills.
The theme for this week will be Potassium. Bring on the bananas!
The theme for this week will be Potassium. Bring on the bananas!
Sunday, June 10, 2007
Veggie Tales
We celebrated Sophie's birthday with her and Frank at their barbecue. I enjoyed grilled vegetables and chicken, my first actual food and not a supplement, since before the hospital. Yesterday, my stomach was still a little queasy, so I had taken it easy and eaten very lightly. Today, was a different story and I savored every bite of grilled squash, eggplant, onion, and zucchini. I wish I could have eaten the raw vegetable kabobs, but I still can't eat raw veggies or fruits. Mike also enjoyed torturing me with his mozzarella caprese: tomato, mozzarella, basil, and olive oil. That is something I think I will enjoy as soon as the doctors give me the green light. I just need to choose the restaurant!
I can feel my energy level increasing and hope tomorrow will be a really good day. I spent today cleaning up our room and emptying out our bags from the hospital. We're in the hospital so often that we end up leaving things around the house. When we returned from the hospital this time, I was surprised that we had left the house in such disarray. I've also got some laundry to do tomorrow, while I have the energy. I also need to head to NIH for my twice-weekly phlebotomy visit. A friend suggested that I could end up in the hospital, so maybe I need to get my blood drawn and RUN so they don't keep me this time!
Two more days until Gina arrives-WOO HOO! or as they say in Texas-YEE HAW!
I can feel my energy level increasing and hope tomorrow will be a really good day. I spent today cleaning up our room and emptying out our bags from the hospital. We're in the hospital so often that we end up leaving things around the house. When we returned from the hospital this time, I was surprised that we had left the house in such disarray. I've also got some laundry to do tomorrow, while I have the energy. I also need to head to NIH for my twice-weekly phlebotomy visit. A friend suggested that I could end up in the hospital, so maybe I need to get my blood drawn and RUN so they don't keep me this time!
Two more days until Gina arrives-WOO HOO! or as they say in Texas-YEE HAW!
Saturday, June 9, 2007
There's No Place Like Home
Sorry, I had to finish the Wizard of Oz theme from my earlier post. I arrived home yesterday and relaxed. Keith gave me a ride home so Mike didn't have to rush home and stayed for a while. Our former neighbor, Andrea, came by to visit us and Riley. Andrea's dogs Romeo and Maddie were best friends with Riley and they used to play together outside all the time. Riley is still sad that his friends moved away, but was really happy to see Andrea, especially since she brought him a new bone.
I'm trying to get some things done around the house today since my cousin comes on Tuesday, but my energy level is low and I'm having a hard time mustering up my energy. I'm trying to do things in 15 minute increments so I don't expend all my energy. I hope to have more energy tomorrow as my white counts continue to rebound even more, especially since we left the house a mess when we ran out the door last week to the hospital and there's a lot to do.
One thing I appreciate about home is having a remote control for the TV because I have to manually turn the channels at the hospital and it's hard on my finger. I also can't flip between channels or go from channel 24 to channel 55 very quickly. I also have cable at home: it's very good to be home.
I'm trying to get some things done around the house today since my cousin comes on Tuesday, but my energy level is low and I'm having a hard time mustering up my energy. I'm trying to do things in 15 minute increments so I don't expend all my energy. I hope to have more energy tomorrow as my white counts continue to rebound even more, especially since we left the house a mess when we ran out the door last week to the hospital and there's a lot to do.
One thing I appreciate about home is having a remote control for the TV because I have to manually turn the channels at the hospital and it's hard on my finger. I also can't flip between channels or go from channel 24 to channel 55 very quickly. I also have cable at home: it's very good to be home.
Thursday, June 7, 2007
South of the Border
My temperature's up tonight, but it's on the border of being high. I'd prefer to be south of that fever border.
Cross your finger and toes, braid your hair, or do whatever it takes to send me home tomorrow. Ron's Jaycee theme for this year is "The Wizard of Oz," so he can send me some ruby slippers that I can click three times. Just don't ask me to bring back the Wicked Witch's broom after I kill her, I don't have the time. I wanna go home.
Cross your finger and toes, braid your hair, or do whatever it takes to send me home tomorrow. Ron's Jaycee theme for this year is "The Wizard of Oz," so he can send me some ruby slippers that I can click three times. Just don't ask me to bring back the Wicked Witch's broom after I kill her, I don't have the time. I wanna go home.
Turning the Corner
My temperature is down today, which is a good thing. My clinical nurse stopped by earlier and said that I have turned the corner today: my white counts are 250 and they should be 500 tomorrow. This means I get to go home tomorrow, but only if I don't spike another fever today.
I'll be happy to get home and sleep in my own bed without a nurse coming in at 4am to check my vitals and weigh me. Seriously, does some evil doctor order the nurses to bother patients as much as possible? Why couldn't they weigh me during the daylight hours? The last two nights, she needed to draw blood at 4am. She couldn't get it out of my IV so she left the task up to phlebotomy, who comes in at 6am. I'm pretty sure the nurses don't have any choice over when this stuff needs to be done, or do they? Maybe they're so bored overnight that they break up their tasks throughout their shift just to give themselves something to do. "Hmmm, I know, I'll draw blood at 4am, that'll be fun!" Sheesh, no wonder I'm so tired when I wake up in the morning.
I'm on my own today as Mike felt comfortable enough to leave me so he could go to work. My clinical nurse commented on what a good gatekeeper he is. He's been really good fetching me ice for my boost, ice water, clean sheets, and anything else I need. He's not getting much sleep either because every time the nurses bother me, they bother him. The evening nurse asked me to turn on the light so she could open up the Tylenol packet. Mike was not a happy camper. The overnight nurse who brought me some more medication had the decency to simply open the bathroom door and use its light. Mike's pull-out sofa is not as comfortable as the other ones he's had here, although he was hopeful when he first saw it. He'll be glad to be home too.
I won't be alone all day as my brother, Michael will be stopping by this afternoon. I think Kathy is coming by sometime today and Melissa will be here tonight while Mike goes to his volleyball playoffs (I hope his team does well). Right now I'm enjoying the quiet while I write this blog and watch a little tv.
I hear the Irish team outside my door. Please hold for this brief commercial............ Wow, for once I can actually hear what the clinical nurse is telling them about me before they troop inside for my debrief. They're gone and it seems like I'll definitely be going home tomorrow (still depends on the fever).
I'm having Boost for breakfast. I was going to order cereal, but Boost probably has more calories and I definitely need the calories. Strawberry Boost is pretty good, but only if it's really cold or poured over ice. I don't think I'm up to eating lunch yet (especially hosptial food) so I may order more Boost or one of those slushies.
I'll be happy to get home and sleep in my own bed without a nurse coming in at 4am to check my vitals and weigh me. Seriously, does some evil doctor order the nurses to bother patients as much as possible? Why couldn't they weigh me during the daylight hours? The last two nights, she needed to draw blood at 4am. She couldn't get it out of my IV so she left the task up to phlebotomy, who comes in at 6am. I'm pretty sure the nurses don't have any choice over when this stuff needs to be done, or do they? Maybe they're so bored overnight that they break up their tasks throughout their shift just to give themselves something to do. "Hmmm, I know, I'll draw blood at 4am, that'll be fun!" Sheesh, no wonder I'm so tired when I wake up in the morning.
I'm on my own today as Mike felt comfortable enough to leave me so he could go to work. My clinical nurse commented on what a good gatekeeper he is. He's been really good fetching me ice for my boost, ice water, clean sheets, and anything else I need. He's not getting much sleep either because every time the nurses bother me, they bother him. The evening nurse asked me to turn on the light so she could open up the Tylenol packet. Mike was not a happy camper. The overnight nurse who brought me some more medication had the decency to simply open the bathroom door and use its light. Mike's pull-out sofa is not as comfortable as the other ones he's had here, although he was hopeful when he first saw it. He'll be glad to be home too.
I won't be alone all day as my brother, Michael will be stopping by this afternoon. I think Kathy is coming by sometime today and Melissa will be here tonight while Mike goes to his volleyball playoffs (I hope his team does well). Right now I'm enjoying the quiet while I write this blog and watch a little tv.
I hear the Irish team outside my door. Please hold for this brief commercial............ Wow, for once I can actually hear what the clinical nurse is telling them about me before they troop inside for my debrief. They're gone and it seems like I'll definitely be going home tomorrow (still depends on the fever).
I'm having Boost for breakfast. I was going to order cereal, but Boost probably has more calories and I definitely need the calories. Strawberry Boost is pretty good, but only if it's really cold or poured over ice. I don't think I'm up to eating lunch yet (especially hosptial food) so I may order more Boost or one of those slushies.
Wednesday, June 6, 2007
You Give me Fever
I didn't feel so well this morning, but I had a blood transfusion overnight and I was very anxious and nervous about it so I didn't sleep very well. I took a nap after breakfast (a 3-hour power nap) and started feel pretty good around noon. I had a high fever yesterday, but yesterday was my NADIR day (my really bad day, when I hit my all-time low) and I was supposed to be feeling better today. I really think it was the anxiety of the transfusion - seeing a dark red liquid go into my body is not so easy to take. It took so long to get the transfusion set up that they had to run it overnight. I also broke out with hives right before the transfusion so the nurse gave me some benadryl. I was hoping the benadryl would have knocked me out, but no such luck.
fter my nap and a frozen slushie , I felt much better. However, Mike touched my forehead about an hour ago and I felt hot so he used the temperature contraption to take my temperature, and it was 39.3 Celsius, or 102.8. When the nurse took my temperature, it was even higher: 40.0, or 104.0. Mike jumped into action and asked for an ice pack to bring my fever down. The nurse and doctor jumped into action and order blood cultures to see what's going on with my body. Yucky. I clutched my phlebotomy/IV companion - Charlie, my stuffed bear and got through it.
They have hung an antibiotic bag, but no word yet on what else they're going to do about the fever. They usually push an antibiotic and give me Tylenol.
Re: Nutrition
The nutritionist came up again this morning and gave me some good suggestions. They have these biotene slushie beverages that are 400 calories. They are also cold, which helps tremendously. She also suggested that I drink Boost over ice because the warm one I had yesterday, came back up later. Boost has 240 calories. She also suggested that I add cashews, frozen bananas, other frozen fruit, or light corn syrup to my smoothies at home for extra calories. She also gave me a bag of the slushie mix to take home. I also received a booklet about shakes, supplements, and more, and one suggestion was Kool-Aid and those instant carnation breakfasts. I can also make a orange sherbet/ginger ale smoothie at home. All of those ideas sound delicious, especially when water starts to taste "funny." I hope these ideas help on this next cycle, which starts next Friday.
fter my nap and a frozen slushie , I felt much better. However, Mike touched my forehead about an hour ago and I felt hot so he used the temperature contraption to take my temperature, and it was 39.3 Celsius, or 102.8. When the nurse took my temperature, it was even higher: 40.0, or 104.0. Mike jumped into action and asked for an ice pack to bring my fever down. The nurse and doctor jumped into action and order blood cultures to see what's going on with my body. Yucky. I clutched my phlebotomy/IV companion - Charlie, my stuffed bear and got through it.
They have hung an antibiotic bag, but no word yet on what else they're going to do about the fever. They usually push an antibiotic and give me Tylenol.
Re: Nutrition
The nutritionist came up again this morning and gave me some good suggestions. They have these biotene slushie beverages that are 400 calories. They are also cold, which helps tremendously. She also suggested that I drink Boost over ice because the warm one I had yesterday, came back up later. Boost has 240 calories. She also suggested that I add cashews, frozen bananas, other frozen fruit, or light corn syrup to my smoothies at home for extra calories. She also gave me a bag of the slushie mix to take home. I also received a booklet about shakes, supplements, and more, and one suggestion was Kool-Aid and those instant carnation breakfasts. I can also make a orange sherbet/ginger ale smoothie at home. All of those ideas sound delicious, especially when water starts to taste "funny." I hope these ideas help on this next cycle, which starts next Friday.
Monday, June 4, 2007
Monday, Monday
The doctors came by this morning and said I'll be here for a few days because I'm officially neutropenic. The positive side is that I'm not running a high fever like last time I was here. I'm glad I'm here so they can keep an eye on me, but I could seriously use a break from running to the bathroom every hour - thanks to my IV. This goes on all night long. I think I managed two hours without a trip last night. It exhausts me so much that I took several naps today.
I requested my favorite nurses - Amy C. and Lori and got both them. Lori happened to be my nurse last night and I asked her to talk to the charge nurse about getting her tonight too. Lori is young and cute and Mike likes to embarrass her. She's also the nurse who managed to get my IV in the other night. Amy C. used to work with my mom so she always takes a little extra care of me, instead of leaving me in my room for hours. She also comes in my room singing songs by the Beatles. She sets my mind at ease.
I've been feel nauseous off and on since I arrived and unfortunately lost my lunch today. I'm staring at dinner and hoping I can keep it down. The hospital food is not that good to begin with, so it's worse when I don't feel well. Amy talked the doctors into giving me a different anti-anxiety medication, and I hope it works. They're also closely monitoring my calorie intake because I'm not down a total of 25 pounds. I get so angry every time I weigh myself, and it's so hard to keep the weight on or gain. I've been given lost of Boost shakes and other shakes by the nutritionist here. Let's hope it works.
I requested my favorite nurses - Amy C. and Lori and got both them. Lori happened to be my nurse last night and I asked her to talk to the charge nurse about getting her tonight too. Lori is young and cute and Mike likes to embarrass her. She's also the nurse who managed to get my IV in the other night. Amy C. used to work with my mom so she always takes a little extra care of me, instead of leaving me in my room for hours. She also comes in my room singing songs by the Beatles. She sets my mind at ease.
I've been feel nauseous off and on since I arrived and unfortunately lost my lunch today. I'm staring at dinner and hoping I can keep it down. The hospital food is not that good to begin with, so it's worse when I don't feel well. Amy talked the doctors into giving me a different anti-anxiety medication, and I hope it works. They're also closely monitoring my calorie intake because I'm not down a total of 25 pounds. I get so angry every time I weigh myself, and it's so hard to keep the weight on or gain. I've been given lost of Boost shakes and other shakes by the nutritionist here. Let's hope it works.
Sunday, June 3, 2007
Weekend Getaway
Yesterday Angela was feeling a little light headed in the morning and in an effort to feel her best for Relay for Life we decided to head down to NIH to get some hydration. That "quick" trip turned into a 2 day (and counting) hospital stay. Ironically, Melissa suggested we take an overnight bag, just in case. That suggestion ended up being really helpful and we missed Relay anyway.
Prior to us leaving for NIH, Jeff and Melissa offered to come over and plant some flowers in our neglected garden. I thought Angela would love the ability to just look out the window and see fresh, pretty flowers in the yard. Unfortunately, we were unable to be there to see the finished product, but no worries because they took pictures for us to see. It looks awesome. THANKS GUYS!
Sunday -
Today was a yucky, dreary and rainy day....pretty much summed up how Angela felt most of the day. Angela suggested that I get out and have some fun today. So what is one supposed to do on a day like today? My ultimate answer...take the boat out for the FIRST run of the year. I called my buddy (fellow boater) and we spent 2 hours flying up and down the Potomac river. Not the optimal conditions, but fun none the less. Enough about me. I digress.
Back to Angela. Her Mom came by and spent a couple of hours with her. She did what she does best, chic-chatted. However, she did do some mom stuff as well as some nurse stuff, so that was nice.
As for a hospital release date, it is still unknown at this point. I am pretty sure that Angela will be here at NIH most of the week.
Prior to us leaving for NIH, Jeff and Melissa offered to come over and plant some flowers in our neglected garden. I thought Angela would love the ability to just look out the window and see fresh, pretty flowers in the yard. Unfortunately, we were unable to be there to see the finished product, but no worries because they took pictures for us to see. It looks awesome. THANKS GUYS!
Sunday -
Today was a yucky, dreary and rainy day....pretty much summed up how Angela felt most of the day. Angela suggested that I get out and have some fun today. So what is one supposed to do on a day like today? My ultimate answer...take the boat out for the FIRST run of the year. I called my buddy (fellow boater) and we spent 2 hours flying up and down the Potomac river. Not the optimal conditions, but fun none the less. Enough about me. I digress.
Back to Angela. Her Mom came by and spent a couple of hours with her. She did what she does best, chic-chatted. However, she did do some mom stuff as well as some nurse stuff, so that was nice.
As for a hospital release date, it is still unknown at this point. I am pretty sure that Angela will be here at NIH most of the week.
Friday, June 1, 2007
Back Home and Hosptial Horror
I just got home from NIH about an hour ago. They just wanted to make sure I was okay because my blood pressure was so low yesterday. It was interesting walking into the hospital instead of being pushed in a wheelchair like I usually am. I was pretty excited about feeling decent for a change, but that soon changed when the nurse tried to start my IV last night for my saline.
I don't really want to relive the experience because it was the worst experience I've had so far. Let's just say the nurse didn't get my IV started the first time and ran out of the room to find someone else to do it. Meanwhile, Melissa was trying to keep my mind off it. The next guy didn't get it either so they brought in another nurse to try. I got poked four times and I nearly cried because I was so miserable. The first nurse told me later that starting IVs is "not my forte," but she wanted to "try." Next time I will knock her out if she comes near me. Then she kept chatting about my veins and we told her to shut up because I didn't need to hear it. I survived, but I really didn't need that last night. The nurses in the day hospital had NO problem just hours earlier.
My mom says that I need to tell them next time that I'm really squeamish and that I prefer an experienced nurse to start my IV. I will totally speak up next time, but I've never had an experience like that before so I didn't know it would be that bad. I was clutching my teddy bear, which I don't normally do. It was horrible.
I'm feeling a little woozy at home still, so I need to keep an eye on my temperature for the weekend so I don't end up back at NIH. I'm drinking my fluids - I learned my lesson.
I don't really want to relive the experience because it was the worst experience I've had so far. Let's just say the nurse didn't get my IV started the first time and ran out of the room to find someone else to do it. Meanwhile, Melissa was trying to keep my mind off it. The next guy didn't get it either so they brought in another nurse to try. I got poked four times and I nearly cried because I was so miserable. The first nurse told me later that starting IVs is "not my forte," but she wanted to "try." Next time I will knock her out if she comes near me. Then she kept chatting about my veins and we told her to shut up because I didn't need to hear it. I survived, but I really didn't need that last night. The nurses in the day hospital had NO problem just hours earlier.
My mom says that I need to tell them next time that I'm really squeamish and that I prefer an experienced nurse to start my IV. I will totally speak up next time, but I've never had an experience like that before so I didn't know it would be that bad. I was clutching my teddy bear, which I don't normally do. It was horrible.
I'm feeling a little woozy at home still, so I need to keep an eye on my temperature for the weekend so I don't end up back at NIH. I'm drinking my fluids - I learned my lesson.
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