Friday, August 31, 2007

Back to Work

This is it: my last day at home before I start back to work on Tuesday. I'm happy to get back to work and be productive and I'm looking forward to catching up with all of my co-workers. However, I'll admit that it's also been nice (when I was feeling well) to be home. Riley and Shelby will certainly miss having me around the house, especially when I can take Riley outside during the day. I also took Riley for short walks around the neighborhood, which I haven't done lately. I kind of feel like the kids who returned to school this week - summer "vacation" is over. Of course, I haven't spent the summer hanging out at the pool, the mall, or wherever kids hang out these days. Instead, I spent a lot of time hanging out at NIH. I'm so thankful all of that is over and I can now focus on becoming healthier overall. Going back to work is one part of that process - moving on with my life and returning to normal.

I just realized that I'm drinking out of my Wonder Woman glass and I think it's kind of appropriate. When I was a kid I loved Wonder Woman and thought she was so cool with her invisible jet and magic lasso of truth. Linda Carter was my hero once upon a time. My grandma used to check out the comic book from the library and I'd read it over and over again. Some fast food chain or grocery store in the 70s gave away the entire superheros collection of glasses (free with purchase of something) and my family had Aquaman, Superman, Batman, and some others. Grandma had Wonder Woman and I used to drink out of that glass every time I visited her. Unfortunately, she gave the glass away several years ago without knowing I wanted it. My friend Suzanne found another one on Ebay and bought it for me because I talked about the glass so much! At one point during my chemo treatments, I thought of Wonder Woman and how I wanted to be like her, but forgot all about until just now. I can be a Wonder Woman too! Sorry, but I'm not going to wear that skimpy outfit and boots; I'll just have a Wonder Woman attitude.
Hmm, wonder if I can find a t-shirt somewhere in my size?

Tuesday, August 28, 2007

Crazy Sexy Cancer

We saw an advertisement for a documentary that will be on TLC tomorrow night (our 9th wedding anniversary too) called, "Crazy Sexy Cancer." A 35-year old actress/filmmaker was diagnosed with a rare and incurable cancer in 2003 and she documents her story as she travels across the country interviewing experts in alternative medicine because traditional chemotherapy treatments won't work for her type of cancer. She has an unbelievable outlook on life and approaches this journery with a wild sense of humor. She says on her blog that she called the documentary, "Crazy Sexy Cancer" because she wanted to kick cancer in the pants, not glorify it. She says, "Cancer ISN'T sexy, the soulful women who have it ARE. We are warriors, angels, vibrant hot tomatoes and cancer cannot take that away from us. Cancer cowgirls are empowered, whole, thrivers with or without the disease."

We're going out to dinner for our anniversary tomorrow, but I've already set my Tivo to record this show. I'm fascinated by this woman who doesn't take her cancer diagnosis lying down and instead chooses to live her life despite cancer. Her website is and I urge you to check out the trailer for the documentary - Mike and I were both in tears when we watched it - and then maybe watch the show. She also has a book called, "Crazy Sexy Cancer Tips" that I need to go check out in the book store. If it's good, I have a few fellow cancer "cowgirls" I should send it to for motivation and inspiration. I've read a lot of books about cancer and a lot of them are very serious. I think it's about time someone wrote something that isn't quite so serious and humorless. When you have cancer, sometimes all you need is a good belly laugh.

Now for a little segway... I have been thinking a lot about my fellow cancer warriors and I want Janine to know that I'm very glad her surgery went well and I hope they got took out all of the cancer. Michell, I hope your friend goes through her next rounds of chemo much better than she has been and I hope she feels better. Ice cream and popsicles always made me feel better! Jennifer Ray, my heart goes out to you and your brother. I am thinking about you and praying for you. I owe you a phone call, a letter, or an email. You were an inspiration to me when I needed it most and I want to return the favor. Melanie Pepper, my heart goes out to you and your mom. I am here for you if you need to talk about things or if you have questions about what she's going through. I am willing to talk to anyone because I want others to learn from my experience and to know that they are not alone.

Saturday, August 25, 2007

Home Sweet Home

We arrived home around 8:30 pm this evening after fighting traffic just past Kings Dominion all the way to near Quantico. I hate Northern VA traffic...

We decided to hang out in the Outer Banks for a while today because we wanted to give all of the other beach traffic some time to get on the road ahead of us. The weekly rentals all leave at 10am so we decided to stay until at least noon and then mosey our way up the coast before heading out off the Outer Banks. We had a very nice breakfast at the B&B, but then every breakfast this week has been marvelous. I'm very glad I can eat salad and fresh fruit again because we had different fresh fruit for breakfast every morning. This morning we had something that tasted like cantaloupe, but didn't look like cantaloupe. It was delicious. We also had cinnamon streusel muffins, french toast, and sausages. Yesterday we had little eggs Benedicts in hard shells that were equally as delicious. I'm really going to miss breakfast and the 4pm cookies at the B&B!

We left the B&B around noon to drive up the coast. We stopped at the Pea Island Nature Conservancy to take a peak at the area. It was hot, hot, hot out there but we saw lots of Monarch butterflies and other butterflies, dragonflies, geese, swans, pelicans, and other waterfowl out on the sound. The sign said there could be bears, but we didn't see any and I'm rather glad. I doubt the bears would come anywhere near the walking trail anyway. I did wonder if there were any gators in the water, but I hadn't seen any gators all week so I wasn't worried.

We also stopped at the Bodie Island lighthouse to take pictures and see the lighthouse up close. We couldn't climb the lighthouse stairs to the top, but we were able to go into the base of the lighthouse and glance upwards. The lighthouse is still in operation because of the dangerous shoals off the North Carolina coast. The Outer Banks is also known as the "Graveyard of the Atlantic" because of the large number of shipwrecks that have occurred in the area.

We had an uneventful and no traffic ride home until we hit Virginia. We also ended up driving in the rain after we passed through Tysons Corner, which thankfully is only about 40 minutes from home. We saw some amazing lightning strikes before it started raining. We both think one of the lightning strikes hit the ground somewhere, but we weren't sure.

We're glad to be home, especially since we missed Riley and Shelby. We do miss seeing the Sound from our balcony though! Riley would have loved it down there, but neither place allowed pets. We saw lots of dogs on the beach, including one greedy little guy who really wanted the rest of my sandwich. I gave him the bologna and salami out of my sandwich and he went away, but then he came back later for the bread! We saw an 8 month old Golden Retriever yesterday who really enjoyed playing in the waves until one cracked on his head. After that he got out of the water and wanted nothing to do with the ocean! Mike really enjoyed playing tug-of-war with him. We also saw one beautiful cat roaming around the B&B, but he never got close enough for us to pet him. Oh well, we've got our own at home now who are definitely craving our attention.

Friday, August 24, 2007

Is it over already?

We are heading home tomorrow, even though I had convinced myself that yesterday was Wednesday instead of Thursday. We went jet skiing the other day on the Pamlico Sound and had a great time, despite only being able to go 40mph and being in a large roped off area. We're used to renting jet skis where they simply tell you, "See you in an hour." The Sound is so shallow here that you have to be in a roped off area so you don't beach the jet ski. It was still fun, but not as much fun as having all of Lake Meade outside of Las Vegas to play. We also took the kayaks out the other day and I was able to paddle for a while without getting too tired. I wasn't very good at paddling before I got sick so this was an experience, but Mike was a good teacher and I did very well.

We might be a little weird, but we went to watch the local high school girls play volleyball last night. The local girls creamed the competition in nearly every game. The third game was close, but the Cape Hatteras Hurricanes finally won. It was a good time.

We went down to the pier in Frisco today, which is about 15 minutes from our hotel. The waves are not as big as Okacroke and I was able to stay in the water for almost an hour. I still haven't really done any swimming in the ocean, but I wade in the water. I'm so weak that the waves make me a little nervous. We might go back this afternoon and I might try swimming with the boogie board.

I had a little cry on the beach this morning and I'm not afraid to admit it. I'm so thankful that I'm alive to appreciate the ocean, the waves, and the sand. I'm alive and I've survived cancer. I'm here in the Outer Banks, which is somewhere I've never been and I have the warm sun above me. It was merely a week ago yesterday that the doctors gave me a clean bill of health and I am thankful for being on the road to recovery.

Monday, August 20, 2007

Greetings from the Outer Banks

We are in Buxton, NC on Cape Hatteras, or the southern tip of the Outer Banks. We checked into our B&B this afternoon after staying on Okacroke Island for the past three days. Okacroke is a charming island where everyone either walks or rides bicycles. We stayed at a very interesting hotel right in the heart of the village across from the Silver Lake Harbor. Our hotel was definitely built in the 1950s and our room had dark wood paneling and a very "cabin-y" feel to it. It wasn't the most beautiful hotel, but we weren't in the room very often so we didn't care. We spent a lot of time walking around the harbor taking pictures of the boats and/or sunsets. We also spent a lot of time hanging out at the coffee shop because it seemed the place to be. The whole island has a very bohemian feel to it with some crazy college kids thrown in for good measure.

We went to the beach yesterday afternoon. I really like the beaches here because, unlike Ocean City and Fenwick Island, they are not crowded. We pulled off onto one of the public beaches and there were probably about ten people on the beach. My doctors recommended I wear aqua socks in the water because my toes are numb and I could cut myself without even knowing. I was glad we purchased them at Walmart for $4.00 on the way down here because there were lots of shells on the beach. My legs are not working properly yet and I'm having a hard time walking so I didn't go swimming, but I did wade out in the surf for a bit. Mike went out for a nice long swim while I took a nap.

Walking has been a bit of a struggle for me, as I said above. I can't walk very far and I can't seem to walk in a straight line either. I didn't realize I was this weak until I started walking around Okacroke. I'm making myself walk more each day to build my strength back up, but it is difficult. Stairs are really hard too and I had to walk up three flights of stairs to get to our hotel room.

I met another cancer survivor yesterday in town and we ran into her again at dinner. We exchanged information so we could check up on each other. She's a nine year breast cancer survivor and she was really pleased to meet me and talk to me about our different treatments. I was able to ask her about some of the things I've been experiencing lately and to ask her about when her hair grew back after chemo. I'm always so thankful or amazed when cancer survivors approach me to ask me about my story and then tell me their stories because it gives me hope. I would like to be the same way when I see another cancer patient. I saw a lady the other day, but didn't talk to her because at the time I was afraid I spread my virus to her.

Speaking of virus, my temperature has only hit 99.5 at the highest since I've been down here so I think the antibiotics are working. I'm still waking up drenched in sweat, but it is getting better.

Our B&B here in Buxton is gorgeous and right on the Pamlico sound. In fact, our room overlooks the sound. I've heard that our continental breakfast is to die for and have heard rave reviews about their raspberry stuffed french toast. I can't wait for breakfast tomorrow. They also have cookies and lemonade every day at 4pm, but we never saw the cookies today. We also have complimentary kayaks, bicyles, beach gear, and hammocks. This is certainly vacation!

Friday, August 17, 2007

Salad Days are Here Again!

I think this link is appropriate. Bop your head in time to the music - it'll put you in a good mood.

I called NIH this morning with some questions I didn't get a chance to ask yesterday and one of them was, "Can I eat salad and cheese now?" YES! Baby greens with blue cheese crumbles, bits of walnuts, and dried cranberries with a raspberry vinaigrette here I come!

She also said that my antibiotics should bring my fever down quickly. I'm taking 500 mg a day and I hope she's right because my temp hit 102 an hour ago. I'm also DONE with NIH, except for my CT scan - no more blood work twice a week, no more hospital stays, no more clinic days. Yay!

I've got to kick this new thing and then I can get on with my life. Oh, and I gained three pounds since last week. I'm at 129. I think vacation may help put a little meat on my bones. :-)

Thursday, August 16, 2007

Ding Dong, Priscilla's DEAD

I think the title says it all. I'll let you read it a couple of times until the news sinks in a little.

The PET scan showed no living tumor - yayyyyyyyyyyyyyyyyyyyyyyy! I'm cancer free! I'm cancer free! My hair will grow back! My next step is to come back in three months for another CT scan to make sure Priscilla isn't trying to sneak back. I have a lot of questions for the doctors that I didn't get a chance to ask so I will call them tomorrow. My first question is, "Can I eat salad now?"

I had some minor bad news to go with this awesome news - one of the tests showed something on the two left nodes of my lungs. It's related to the virus and cough that I've had all week. I met with the Infectious Disease team this afternoon and was thoroughly interviewed and inspected. They think it's some sort of viral pneumonia and took a few tests just to be sure. They gave me some antibiotics and told me to call tomorrow if I'm still having fevers. I had a temperature of 102 this morning, but was completely normal at 2pm. I really want to kick this thing before we go on our vacation to the Outer Banks. The doctors said I should still go and have fun because I'm not deathly ill today, which I would be if it was something really serious.

It still hasn't hit me yet that I'm cancer free because I'm whirling from the viral pneumonia news. I'm trying to be excited, but this other thing kind of put a small black mark on my celebration. Maybe in a couple of hours I'll be jumping up and down with excitement. I called Gina and she was super excited so that definitely helped pump me up some more. I'm certain that once we get to Okacroke, NC on Saturday, I'll be really excited.

Wednesday, August 15, 2007

Still Sick

My temperature's been bouncing up and down from 98.6 to 101. I didn't wake up drenched in sweat this morning so I thought my temperature had gone down, but it was still 99 degrees. My cough is getting a little worse, which is what used to happen to me every winter. I used to get colds that would turn into a mild bronchitis and I'm hoping it doesn't happen this time. I have been through the ringer and now this happens. I'm very annoyed with this virus. I was prescribed an inhaler, which is what I normally get when this cough starts, but the order wasn't called into the pharmacy yesterday and we didn't want to wait and get stuck in traffic. Mike said he'll pick up my prescription today on his way home and I really hope it helps.

I still have my PET and CT scans tomorrow and I just hope I won't be coughing all over the place, especially because I have to hold my breath for a few seconds during the CT scan. I've been looking forward to tomorrow for so long and now this virus has me sidelined a bit. We're supposed to go on vacation on Saturday to the Outer Banks and I don't want to cancel the trip. I'm hoping this virus is all gone by tomorrow.

Monday, August 13, 2007

Bad Dad!

I felt fine over the weekend, but started to feel a little weak Sunday. I thought it was just my body still recovering from the hospital. I drank some water and took a nap and felt better after the nap. However, I was too weak to cook dinner so I coached Mike as he made Hamburger Helper. That evening I developed a cough and when we went to bed at 11pm, Mike insisted that I take my temperature because the cough concerned him. Imagine my surprise when the thermometer registered 102.3! I called NIH immediately and the doctor on call insisted I come in so they could take a blood test and determine if I was still neutropenic. I shouldn't have been because my ANC was 1,000 and I'd have to be below 500 to be neutropenic.

We arrived at NIH at midnight and it took a while for them to do the blood work and the nurse who was doing it wasn't exactly instilling confidence in me or Mike. She kept tapping my arm looking for a good vein and after several minutes, I asked if she wanted to look at my left arm. Mike was just about to insist that she leave when she found a good vein. I let her go ahead with the stick and she was much better than I expected. Unfortunately, we had to wait a while for the results. Around 1am we heard the charge nurse yell, "Oh my gosh, they're 12,000!" We knew she was talking about me and I definitely wasn't neutropenic. The doctor came by later and said they would give me Tylenol to bring the fever down and send me home. We arrived home at 2am and went straight to sleep.

I woke up early Monday morning and this morning drenched in sweat and I had soaked through my sheets and comforter. I managed to put down a towel underneath me to cover up the dampness and sleep with a towel above me as my sheet. The sweating meant that my fever had broken (thanks to the Tylenol), but I couldn't sleep very well because I was soaking wet. I don't really like going through the "Tylenol cycle" because at first I freeze, then I burn up with heat, and then an hour later I sweat buckets.

My blood cultures came back negative and the doctors all think it's a cold that will go away eventually. I just have to drink plenty of fluids and take Tylenol for the fevers. Mike talked to Dad today and he went to the doctor with a fever of 101. Hmmm, my Nurse Practitioner and all of the NIH nurses are sure he gave this to me. He came to visit me last Tuesday at the hospital when I was neutropenic, but he probably didn't know he was coming down with something. Mom is in denial.

Just when I thought I was done being sick for a while...

Sunday, August 12, 2007

Last Shot!

I'm looking forward to receiving my last G-shot tonight. I'll get my blood tested tomorrow to know if I'm really done, but I usually don't get shots past Sunday and my white count was really high on Friday when I left the hospital. I have a ton of medicine that I don't know what to do with that I don't think I'll need anymore so I need to ask if I do need it and how to dispose of it if I don't.

Thursday is the day I get tested to find out if Priscilla is gone for good. I should know the results around 2pm when I meet with my team for clinic day and I'll post the news when I get home. I am trying to gear myself up for either bad or good news so I'm not devastated if it's not great news and trying to be hopeful that it is good news. It will be good news to a degree because Priscilla had shrunk by nearly half on my last CT scan and I had at least two more chemo cycles after that. I am confident that she has shrunk even more, but am not sure if she hit the road or there's just one centimeter left to fight.

Mike is taking me on a much-needed vacation on Saturday to celebrate the end of my treatment and hospitalizations and to give me a chance to be somewhere other than here where I can relax for a week. We're going to Okacroke, NC for the weekend and then Hatteras for the rest of that week. Okacroke is supposed to be a really slow-paced island where people drive electric golf carts and sit out on their front porches. This is pretty much all I have the energy for right now. I tell you, I am weak today and am having a hard time mustering up the energy to walk. I'm really looking forward to spending some time alone with Mike and sitting on a hammock chair watching the world go by. It will also be nice to be away somewhere and not really have to think about cancer for a few days. I promise to have a good time, even if my news is not 100% good on Thursday.

I received an email from my volleyball league today asking if I'm playing this fall and I had to tell them no. I definitely don't have the energy for volleyball. I'm hoping my doctors will clear me to take water aerobics this fall because that's good low impact cardio. I think they will because I brought it up last week when I was in the hospital and they didn't see a reason not to, but they wanted me to ask my full team on clinic day. I know I can't rock climb for a while for several reasons and one of them is simply because my fingers and toes are numb and my fingernails look like they could fall off at any minute. This is another side effect I found out about as I went through treatment. I hope to regain the feeling in my fingers and toes in about a month.

Friday, August 10, 2007

Night Nurses

I'll tell you about my night nurse experience after I tell you that I'm home and my ANC was over 1,000 this morning (the magic number is 500). Wesley, the phlebotomist, told me this morning he heard I was going home and I said I didn't know yet, but he was holding the magic ticket in his test tube! Obviously it worked out and I don't know who was happier about the news - me or my team when they told me this morning. I have a bit of sad news too. Dr. Byrd, one of my Irish boys, is leaving NIH on Wednesday and heading up to Sloan Kettering hospital in New York for a few months before moving back to Ireland. Dr. DunLeavy is the dreamy one, but Dr. Byrd and his sweet accent will be missed. He is the first doctor I met with at NIH before I was officially on the EPOCH protocol.

On to my night nurse story that I have to tell because I'm still annoyed even though Mike isn't. The night shift starts around 10, but when I fell asleep I hadn't met her yet. I knew she'd be coming in around 1am to administer my antibiotic through my IV. The previous night nurse had done the same, but I wasn't worried since it's simply come in and hook me up to my IV and then unhook me when it's done.

However, I was not thrilled when nurse Judy walked in my room at 12:30am. I've had her before and she just annoys me and after last night I really don't like having her as my night nurse. At first, she tried to be a good nurse and opened the bathroom door for light instead of turning on the main light since Mike was sleeping. It went downhill from there when she asked me if I knew whether the previous nurses had administered my antibiotic over 15 or 30 minutes. I didn't mind her asking and told her I thought one nurse had commented that she'd be back in my room in 30 minutes when it was done. Judy decided to push it over 30 minutes because she didn't want to blow my vein, which the thought just gave me the chills, so I heartily agreed. However, she then told me that if she did blow my vein, either she or a number of other night nurses could start a new IV, but she could do it because she was bored. She complained that the other nurses were busy and she only had my antibiotic to do so she was really bored and had nothing to do. She asked if she could sit on my bed while she hooked up my IV, remarked how comfortable my air mattress was compared to the regular hospital bed, chatted on about programming the IV machine, asked what "that noise was" that she kept hearing even though I couldn't hear it, and told me not to touch my IV site because I could pop the needle out. Apparently, a lot of men do this, but I assured her that I wasn't touching my IV site. I never touch my IV site. I am AFRAID of needles and I'm not messing with it. I really like hearing this stuff at nearly 1am! Keep in mind that 1) she's scaring me now and 2) Mike's trying to sleep. She finally left the room for about 30 minutes, but I definitely didn't go back to sleep. Judy came back in the room and unhooked me from the machine and chatted with me about some other stuff while I muttered uh-huh or uh-uh. I wanted her out of my room so I could sleep for a few hours. She finally left and I somehow managed to go back to sleep, but it was difficult.

At 5:55am, Judy was back dragging the hospital scale, banging into the door on her way into the room, and startling both me and Mike awake. She insisted on turning on the main light so she could weigh me, which other nurses have managed to use the bathroom light to read the scale. (As a side note, I lost two pounds this week and am at 124. Rest assured, I will gain it back.) She took my vital signs and started complaining about how she tried waiting for the phlebotomy guy, whose name she said she couldn't remember even though she had worked there five years, to show up on the unit. I told her his name, Wesley, which I knew even though I've only been going to NIH since April! She then complained about how Wesley was normally on the unit at 5:45 on Mondays, but noticed that he got there later and later as the week progressed.

I know Wesley and I also know that Wesley starts his shift around 5am over on 3NW because I was over there one time and asked him because he woke me up at 5:15 to draw blood. When he's done there, he heads over to 3NE. He may have had a lot of patients on 3NW this morning. She was shocked when I said Wesley didn't hit my room until 6:45 on Wednesday and asked me if I knew why he was so late. Um, no. I was actually trying to point out that he's not there all the time right at 6am, but I think it backfired. Mike decided to get up and get ready for work early because he couldn't sleep through all of her talking and complaining and I felt really bad. Not only was she blabbering, but she was using a normal daytime voice and not being very quiet so he could sleep.

When Wesley arrived at 6:10, I told him we had just been talking about him and mentioned that Judy had complained that he was late (even though he wasn't). He remarked that he couldn't be superman and I suggested he clone himself - one Wesley for each wing. I laughed heartily when Wesley said Judy thinks she knows everything! I think that about sums up nurse Judy. She was my nurse one evening during my second hospital stay who was really upset that Mike had brought me a heating pad from home because the hospital heat packs stink and I was in a LOT OF PAIN. She was up in arms that I hadn't gotten the heating pad inspected by someone at NIH because, as a cancer patient, I could burn myself since I'm more sensitive to heat. Luckily, I had been smart enough to notice the medium setting was a little too hot and I had put it on the lowest setting.

I'm glad to be home! I won't even go into my annoying nurse Paula story because Judy topped her. However, Paula is the number one reason I am now terrified of IVs because she was my nurse that terrible night when I got stuck four different times. She just annoyed me on a minor level this time.

Wednesday, August 8, 2007

Double or Nothing

My ANC (absolute neutrophil count) was just 9 yesterday, which is the lowest I think it's ever been. Today it's at 23. The magic number for me to go home is 500. Traditionally, it picks up tomorrow and just hits 500 on Friday. I'm hoping to repeat history so I don't have to be here through Saturday.

I had a little bit of a rough night last night. The nurse took my temperature at 1am and I was running a fever. The deal is that if I run a fever, they have to take my blood cultures (every 24 hours). The last time I had been cultured was midnight the day before because of my late check in time so I had to have blood drawn from both arms. Poor Mike was sleeping, but the nurse had to turn the light on so she could see. I was happy that she could use my IV to draw blood so I only had to get stuck once, but Mike wasn't happy about being awakened at 1am. He's pretty tired today. I went back to sleep after he left for work (and after phlebotomy came in to draw blood at 6:40).

Dad came to see me today, which is pretty monumental since he hasn't been able to drive until last week. He goes back to work next Monday, but he's still moving around with a cane. He's got a handicapped tag for at least another month. Unfortunately, he wasn't paying attention at the front gate and got in the wrong line with the people who don't have badges. If you have a badge, they wave you to the left and then on through. He had to go through the whole security line. I should have told him about the side entrance off Old Georgetown road, which is even faster.

I'm feeling a little more energetic today. I slept a lot yesterday and fell asleep by 9pm too. I just could not stay awake, but it's probably because my ANC was so low. The doctors finally got on the ball and have agreed to give me anti-nausea medication twice a day because I get too nauseous to eat otherwise. Of course, my oatmeal this morning wasn't really worth eating! I often wonder how they mess up the food so horribly. I mean, oatmeal is oatmeal. They must buy generic because it definitely wasn't Quaker Oats! I've got to call for my lunch and I'm so excited about my prospects. Maybe I'll just have a sandwich - they can't mess that up too badly. Right......?

Tuesday, August 7, 2007

I'm at NIH and Riley's at Camp Barkalot

My temperature spiked at 100.4 and then 100.9 last night so I had to get to NIH. Mike was still at volleyball with Riley so I called my mom. Mike called be back and said he was on his way home so my Mom turned around and went back home. I then arranged for Blair to pick up our big redheaded golden retriever and take him to camp with his dog, Wylie. Mike arrived home shortly thereafter and we finished packing for our trip here. Mike was starving after volleyball so we stopped at McD's first (I was impressed with the McDs in Rockville on 355 - they totally redecorated it and it looks really nice. It's too bad we could NOT understand the guy at the drive through. At one point, I thought he asked if we drove a VW Jetta.)

Anyway, we finally arrived at NIH at 9:45pm. I went to the inpatient unit and they said they had a room ready for me, but some lady was in my room who was not even a patient. They were confused and asked who she was and it turns out that her daughter is staying in the ICU and she was staying in my room. The nurses quickly worked to get a new room ready for me, but I had to wait a while. They took my blood pressure, pulse, and weight while I waited. I weigh 126.8 pounds - neither losing weight since last time nor gaining weight - I am STABLE!! (okay, at least just my weight is stable, I can't speak for the rest of me ;)).

We finally checked into our luxurious new digs at NIH and the bathroom hadn't been cleaned so I had to call for housekeeping. I told every nurse I saw that I needed a very experienced person to start my IV because I'm terrified. Several nurses were honest and said they wouldn't be doing it. I also met with the doctor on call, Dr. Huang, after my temperature returned to nearly normal. I asked if I could return home and come back today, but she said no.

I had a very difficult time last night because of all the waiting - waiting for someone to stick me with an IV, waiting to go down to Admissions, waiting to get a chest x-ray, waiting for my medications. In the end, Nurse Richard did my IV and he was so good that I didn't know until Mike told me this morning that he also drew blood cultures too. I mentioned to my NP this morning that no one from phlebotomy showed up this morning and Mike said that Richard had already done it. I kept getting my medication a little at a time and I was tired so I kept dozing off while I waited. I finally got my G-shot at 2:45am. They also started me with antibiotics last night for about 30 minutes, but then took me off the IV, which they don't normally do. For once, I was free to sleep without worrying about an IV pole leash.

This morning I woke up thirsty and had asked for some water last night, which no one brought. The morning nurse brought me a teeny cup of ice water because she said she wasn't sure what the doctors were going to put in for my nutrition orders. When NP Karen McGinn arrived, I complained about everything to her and she got my water, made sure my orders were put in so I could order breakfast, and genuinely apologized for all of the craziness. Karen McGinn is smart and funny and always willing to take care of me and Mike. She's a bright spot here at NIH.

Riley is having a great time at Camp Barkalot and the first thing he did was eat all of Wylie's food and then Wylie ate his. Blair will keep them busy I am sure, but I'll post some of his musings from camp.

Monday, August 6, 2007


I went to NIH this morning for my blood work and, as I expected, they called about two hours ago to let me know that I neutropenic. I had a feeling because I've been feeling a little weak today without much energy. The woman made me laugh a little because she first asked if I was on cycle six (yes) and if I'd ever been neutropenic before (yes, every cycle). Then she started telling me a bunch of stuff I already know (if my temperature hits 101.0, call and come in immediately, don't change the cat's litter box, don't each fresh fruits and vegetables, etc.) I know the drill by now and I've been following the rules this whole time. The nurse who called me last cycle was much more with it than this lady!

My temperature has been up and down since yesterday and I'm just hoping to keep out of the hospital until tomorrow. I had a close call last night, but then my temperature dropped from 100.3 to 99.5 and I was safe for the night. I have my bag packed because I just know I'll be going to the hospital sometime. I'm drinking my fluids so when they do have to put an IV in me, I'll be hydrated. Meanwhile, I'm resting on the sofa because my energy level is really low and it takes a lot just to walk from one room to the next. I just wish there was something better to watch on tv!

Friday, August 3, 2007


It's Friday and I'm hanging in there, but I haven't been sleeping very well these past two nights. I woke up with a sore throat both yesterday and today, but I think it might be my allergies kicking up because of the ceiling fan. Unfortunately, I still get awful hot flashes at night so I need the fan to keep me cool. The hot flashes are worse while I'm wearing the fanny pack (last week) so I'm not suffering nearly as much. I woke up several times last week drenched from sweat. Now I'm just not sleeping very well. I was also really achy yesterday but that could be from the shots and working out with my trainer. I've been trying to work out once a week on my two good weeks - right before chemo and the day after just to build some strength. I had no problems working out after chemo, except for these last two cycles I ended up really sore across my back and chest. At least I'm done with chemo and in about 10 days I will be done with my shots!

I was able to make Kate & Luke's farewell dinner last night, although I wasn't so sure earlier in the day if I could go since I wasn't feeling 100%. Kate and Luke are Jaycees and they're moving to Pennsylvania so Luke can go to seminary school to become a minister. I'm going to miss both of them and I'm sad to see them go. Luke's going to make an awesome minister and I wish him the best. It's too bad he hasn't graduated already because my pastor is moving to California in August and Luke would be a good replacement.

I've got to head to NIH today for my bi-weekly phlebotomy visit. I've actually got to get moving because I want to get there before all the good people go to lunch. I'll keep posting throughout the weekend - keep your fingers crossed and those prayers up that I'm still here.

Wednesday, August 1, 2007

The Nurses

I have to say something about the nurses who've been treating me at the NIH Day Hospital all these months - they are wonderful, awesome ladies who deserve a special round of applause. CLAP CLAP CLAP CLAP! Just before I left yesterday, Vanessa brought in all of the nurses and they sang, "For She's a Jolly Good Fellow," gave me a special "purple heart" certificate to congratulate me on finishing chemo, and gave me a cake. Mike and I were so touched by this. I'm still in a bit of shock that the chemo part is done and now I need to get through the next couple of weeks of a possible hospital stay and then THE TESTS to see if Priscilla is gone.

I took myself to lunch today at Bob Evans and a lady wearing an American Cancer Society Relay for Life t-shirt came up to me and asked what kind of cancer I have. She was very sweet and shared her own story of how she is a one year breast cancer survivor. I sat down to eat and she came over later and, with tears in her eyes, handed me an inspirational magnet that she wanted me to have to motivate me and encourage me. She said she was so proud of me. After she left, I started thinking about everything I've been through and I started to cry just a little. I am so thankful for the support and love I've received these past few months and it means so much to be nearing the end of my chemo road. I can't wait until I can spot another cancer survivor in restaurant and motivate him or her to keep pushing through the bad times. When I started, I thought this would be so difficult and I was scared. I'm still scared sometimes, but I've been through some dark times and I'm still fighting. I've laughed and cried through the pain and heartache, but I'm still fighting and I'll continue to fight. Priscilla has definitely not taken me down with her.