Freedom!

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!

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.

101.0 - Time to Go

My temperature hit 101.0 so I'm on my way to NIH. No luck this time.

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.

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.

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.

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.