Chemo Conga!

Last chemo run today - let's CONGA through the hallways of NIH, past phlebotomy, wave to the CT/PET/Nuclear medicine people, and conga around the corner out the door. Give a special wave to the valet parking guys because they just earned team of the quarter and they deserve a little conga wave too.

CONGA-Courtesy of Gloria Estefan

Come on, shake your body baby,
Do the conga
I know you can't control yourself any longer
Feel the rhythm of the music getting stronger
Don't you fight it till you've tried it
Do the conga beat

Everybody gather 'round now
Let your body feel the heat.
Don't you worry if you can't dance
Let the music move your feet.
It's the rhythm of the island
And like sugarcane, so sweet.
If you want to do the conga
You've got to listen to the beat.

Come on, shake your body baby,
Do the conga
I know you can't control yourself any longer
Feel the rhythm of the music getting stronger
Don't you fight it till you've tried it
Do the conga beat

Feel the fire of desire
As you dance the night away.
'Cos tonight we're gonna party
Till we see the break of day.
Better get yourself together
And hold on to what you got.
Once the music hits your system
There's no way you're gonna stop.

Come on, shake your body baby,
Do the conga
I know you can't control yourself any longer
Feel the rhythm of the music getting stronger
Don't you fight it till you've tried it
Do the conga beat.

Victory Dance!

I laughed out loud at Blair's comments about choreographing my victory dance because I was just thinking about how close I am to doing a victory dance when I happened to log on and read his comment. I'm not sure if I should try to do a back flip in the NIH parking lot, especially since I've never really been coordinated enough before chemo to attempt a back flip. I could do some sort of end zone dance and spike a football as I run laps around my car in front of the building. Do I scream "WOO HOOOOOOOOOOOOO!" as I leave the building or save that for after my CT/PET scan results on August 16th? I feel like celebrating at least this first part because I won't need chemo (hopefully) ever again and I'm excited. I know I may have a hospital visit next week to look "forward to," but at least the chemo part is DONE! No more chemo coladas for me and hopefully Priscilla is nothing but a tiny nit and nothing to worry about any more.

I'll arrive tomorrow at noon, they'll load me up with saline, switch over to my last chemo drug - the nasty cytoxin, load me up with the rest of the saline, take out my IJ line, make me wait 30 minutes after that so I don't bleed to death, and send me on my merry way. I want to remember to bring camera to get a picture of me and Vanessa because she's been such a good nurse to me and this will be a happy occasion. Hmm, I think I will wear my Relay for Life Cancer Survivor t-shirt tomorrow because I really think I've earned it now.

On another note back to my "real life:" the Jaycees are collecting school supplies for several local elementary schools, including my own and I'm having fun buying stuff. Staples and Office Depot have been having these 5 cent sales on different products and today I bought five bottles of glue for five cents each and some notebook paper. I think I spent a total of $2.50. I also bought two backpacks at Target for $8 each. Last weekend I bought a ton of stuff and spent less than $20 on pens, pencils, composition books, notebook paper, erasers, glue, glue sticks, rulers, a dictionary, folders, and more. I have an Office Depot gift card so I'm not even spending my own money on some of this stuff, which makes it more fun. G&G Jaycees, check out your sale ads and go shopping - remember to look for the 5 cent sales and you'll save a ton of money. It's fun!

I Can See the Finish Line!

We woke up around 6am to get ready for NIH. I haven't been up that early in a while and it was very hard to get moving. I think even Riley thought it was too early because we've been sleeping until 8:30, but he managed to get up with a little complaining. I took my little ativan anti-anxiety pill in the car on the way to ease my nerves of the upcoming procedure. By the time we arrived, I could feel it start to kick in a little. Mike stopped for coffee in the lobby and I was dying for something to eat, especially since I couldn't have any food until later. Mike convinced me to get something and so I purchased a chocolate croissant. We ran into Steve, my old EPOCH buddy, in special procedures. He's on in his last round too and we chatted for a while. I think my ativan kicked in really good while we chatted because Mike noticed I was really chatty! It's times like these that I become my Mom! Steve went back first and I had some problem where they didn't know if I was on contact isolation or why I would be on contact isolation and I've been through this issue before (usually stems from my problems with "the skitters"), but I didn't think I was on contact isolation today.

I finally got back to the "spaceship" room where they put my IJ line in. I always feel like I'm on a messier version of a Buck Rogers set or I'm in the Millennium Falcon because the room is filled with lights and things move up and down around me. It's a really cool room, even though there's medical equipment all over the place, which is why it looks cluttered and cool at the same time. I took a .5 mg of ativan just before my procedure so I felt NO pain. Unfortunately, my blood pressure was low so they had to start an IV of saline fluids. I was very happy with their IV tech and the ativan probably also set my mind at ease.

When I was done, they wheeled me out of the room and we waited for someone to wheel me to the day hospital where I would receive my first dose of chemo colada. I was starving and ate my chocolate croissant on the way upstairs. This was a very good idea because I ordered breakfast from my chair in the day hospital, took my benadryl, tylenol, and other medicines, and promptly passed out asleep. I woke up several hours later because I had to use the restroom and because I was hungry. I ate my breakfast and fell right back asleep. Mike woke me up at 2pm and told me it was time to go home and I didn't believe him - I wanted to go back to sleep! I hadn't even changed out of the hospital gown from my surgery and had to change back into my regular clothes before we could leave. I barely remember the ride home and soon as we got home, I went back to sleep on the sofa for several hours. ZZZZZZZZZZZZZZZ

I did manage to make it to a Jaycee "happy hour" tonight at a new restaurant in town, but Melissa drove. I had a very good pasta farfalle with chicken, red and green peppers, and artichoke hearts. I was trying to get my lean protein and veggies in to today's diet. I was a little bad and had caffeinated ice tea, but it was soooo good.

Let's see what excitement tomorrow brings. The prednionse should give me a very good appetite and some extra energy. I forgot to mention in yesterday's post that my weight is up to 128.8 pounds. Yay!!! I think it was 127 when I left the hospital so I'm gaining a little bit at a time. Double yay!! There may be a time when I don't post my weight at all, and all I'll tell you is that I'm back to normal. ;-)

Thankful

As I near the finish line, I can't help but look back and be thankful for a few things:

• Mike has supported and taken care of me without complaint. He picks up after me, makes sure I am eating and drinking properly, and takes care of Shelby's litter box. He is also planning a very special getaway for us when I get better. He's seen me at my worst and tells me that I'm a beautiful bald lady, even when I don't feel very beautiful. He's held my hand when the nurse had to stick me more than once to start the dang IV. He's also quite adept at giving me my nightly shot.
• My parents have supported me throughout this whole ordeal. They've driven me to NIH numerous times, even on days when I could have driven myself. They've come over and cooked dinner for us. Dad calls almost daily to make sure I am okay, which is all he can do since he's still recovering from his surgery. Mom has given me a number of cancer books to help me figure out what is what and she's also been my sounding board for any medical issues I don't understand.
• Michael has taken me to NIH and lunch a number of times, including the time we drove in his company landscaping truck and had to go through the commercial entrance! He's always late, but eventually I get there. LaShaunda has given me lots of good books to read.
• Memom (Grandma Erickson) has calmed me down and talked me through my blood transfusions.
• My relatives across the country have sent cards and letters to let me know how much they love me.
• Cousin Gina came to visit and cooked fabulous Tex-Mex meals and let me beat her once at Mexican Dominoes. She also made me laugh really hard almost every day she was here.
• Mike's family has sent me cards and gifts to let me know they are thinking about and praying for me. Aunt Shirley sends a card almost every month and sent me a very special gift yesterday of a WillowTree figurine entitled "Good Health" that I treasure.
• Mike's mom and brother visited and helped out while I was in the hospital. Gail cleaned the house from top to bottom (and did the laundry!) They also gave Mike a chance to take his boat out for the first time this season. I hear they all enjoyed themselves at Lake Anna.
• My neighbors have brought delicious meals for us to enjoy, including tonight when I hadn't figured out what I was going to fix yet.
• My friends have sent chocolate, flowers, teddy bears, cards, and books. They've come into my house, taken my own pictures, and made a scrapbook about me. They've brought over lasagna, apple pie, homemade soup, custard, and other dishes. They've planted flowers in my front yard and in the flower boxes on my deck. They've made me laugh with funny emails and silly cards. They've sent scarves from Israel or bought some locally. They've also made themselves available for any emergency trips to NIH that I thankfully haven't needed.
• Melissa has driven me to NIH, tried to distract me when the nurses had to stick me FOUR times to start my IV, given me pep talks when I am down, and babysitted me on nights when Mike went to play volleyball.
• My coworkers have checked up on me and sent emails telling me they miss me and catching me up on things at the office. This is especially important because when I return in September, I will no longer work for Dimensions International, but for Honeywell. It will be a new company, but I hope to see a lot of familiar faces.

I am thankful for so much and grateful for all of the support, love, and prayers I have received over the past few months. I can't wait to be finally done with my chemo treatments and look forward to slowly returning to "normal." I also can't wait to see what my hair looks like when it does grow back (although I haven't missed shaving)! I'm really looking forward to playing volleyball, hiking, working out, doing my water aerobics, and finally learning how to waterski. Life is sweet.

No Relaxation for Me

I didn't get to relax as much today as I had hoped, but I ran some errands. I had to get to the grocery store because I was completely out of milk. I am trying to bulk up my fiber intake by eating steel cut oats (similar to oatmeal), but I hate waiting 30 minutes for it to cook on my stovetop. Cold cereal is a much better solution.

I also went to Starbucks because I am addicted to their ice cold chai tea lattes. That first sip is pure heaven - delicious and dreamy. I hear they are raising their prices by 9 cents per drink and I am greatly annoyed because I believe they raised their prices just last year. They have got to be making a killing in profits because their drinks are already expensive and now each beverage will cost 9 cents more. I used to go to Starbucks every day on my way to work and I haven't been there as often since I've been sick. I usually only go there once or twice during my good week. I don't know what I'll do when I go back to work - skip the Starbucks or increase my "entertainment" budget? What's a girl to do?

Tomorrow is my clinic day where I meet with my team to discuss the strategy for this next and FINAL chemo round. I think they will keep me on the antibiotics since they worked pretty well last time, but switch out the amoxicillan because I broke out in minor hives nearly every day. I told them when I was in the hospital that I could handle the hives because the antibiotics helped my other symptoms. I usually took a benadryl and the hives went away. I hope they keep me on antibiotics and maybe I can stay out of the hospital or repeat my short hospital stay again. I don't want any surprises on this last round and would prefer a repeat performance of round five. I'm not even sure how to feel on this last round. I am relieved that the end is in sight, but I also know I've got at least one more potential miserable IV stick in my future. Send your prayers my way for staying out of the hospital OR for having Okee be the nurse who starts my IV because she was so good last time.

I have a 7:30am appointment on Friday in Special Procedures so they can put my IJ line in my chest. I hope they don't have any problems like they did last time. There's nothing worse than laying on an operating-type table and hearing them talk about you like you're not there. Of course, I couldn't feel anything that they were doing since they numbed me up, but I could hear them talking. Not a good feeling to have. At least it's my last one, so I won't complain too much!

Busy as a Bee

I've been busy since I was released from the hospital and some of that includes catching up on loads of dirty laundry. I hate doing laundry, but the pile was enormous and needed to be done. I did one load on Saturday and then headed over to the State park for a Jaycees picnic. I haven't attended many Jaycee events since I was diagnosed so it was nice to attend something and see people I haven't seen in a while. I was glad to see so many new faces and some familiar ones too. Unfortunately, I didn't have the energy to participate in the games but I was able to appreciate them from afar. I finished up the laundry on Sunday and had dinner with Melissa.

I spent Sunday night worrying about getting caught driving with an expired license and decided to go to the MVA on Monday, especially since I had to drive to NIH for my bi-weekly blood work and felt certain that this would be the time I would get pulled over by Montgomery County's finest. I was a little poky in the morning and didn't get to the MVA until noon, which is normally a really bad time to be there. However, I must have arrived at 11:59 because there were only two people in front of me. I filled out the change of address paperwork while I waited, but I was having trouble writing clearly. One of the symptoms that I started experiencing early in July is numbness in my fingers and toes. This is just something that happens as a result of the chemo and I hear the feeling will return, but it does make writing, opening jars, and buttoning my pants a little difficult. I wrote my information as clearly as possible, but my handwriting is a little spidery looking right now.

I was called to one of the windows and the lady was very nice and helpful. I passed the vision test and then handed her my change of address form. I explained that my form might be hard to read because my fingers were numb and she asked why, so I told her I had cancer. She looked shocked and was appropriately sympathetic and we chatted about my chemo and her family's diabetes issues (however, she was eating from a very large bag of donuts from Giant's bakery department as we talked). She took my picture and I smiled as big as I could, all the while thinking, "Look like a movie star for this picture." I guess it worked because it's not a bad picture, although the wig does make me look older or "more mature." I look like someones mom with my wig, which is not a bad thing, it's just not my normal look.

Afterwards, I drove to NIH for my blood work and kicked myself when I arrived for not calling ahead. In order for them to know how much blood to draw, the doctor has to call in my orders and I try to call before I leave so that my orders are in when I arrive and I don't have to wait too long. I forgot to call and then the doctor forgot to put the orders in right away so they had to page him and ask him to do it again. I sat in the waiting room for more than an hour, and it wasn't even that busy. Luckily, I had decided to stop at Safeway for a Starbucks fix before I drove to Bethesda and had picked up a sandwich. I met a very nice young lady while I was waiting and asked her why she was there and she replied that she had a grapefruit-sized tumor in her ovaries and a "whole mess of other problems." I was shocked because she was young and seemed healthy. I wish her the best.

I had another busy day today with a massage at 11am, my workout with Tom at 1pm, and chauffering my dad to his physical therapy appointment at 3pm. I've been scheduling a massage every three weeks, right before each chemo round as a way to massage out some of the stress. I wasn't going to do it this time, but I noticed that my lower back, calves, and hamstrings have been really tight to the point where it hurts to walk. She really got the kinks out and I felt much better. I worked out with Tom, which I also try to do every three weeks. I struggled with one of the cardio exercises because I just don't have the stamina I used to have. I can't wait to get back to the gym more regularly and build up my strength and muscle.

My brother was supposed to drive Dad to his appointment, but he had scheduled a consultation at the same time for his landscaping business and Mom asked if I could do it. I remarked when we arrived at the rehab center that we made quite a pair - I have cancer and he's got a cast and cane. I was hoping to watch Dad do his workout, but his therapist wouldn't let me back there. I just wanted to see what kind of exercises he would be doing. Instead, I read every magazine in the freezing cold waiting room while I waited. I'm glad he's finally doing physical therapy because he can really start healing and hopefully get back his full range of motion soon. He'll have physical therapy twice a week for a while and until he can drive, it's going to be an interesting experience for Mom trying to organize rides for Dad.

Tomorrow I'm going to relax at home!

Drivin' My Life Away

Kathy and I were talking on the phone this morning while I waited for my chauffeur to pick me up from the hospital. She had visited yesterday and I had asked her if she had watched the silly, fluffy show about Victoria "Posh Spice" Beckham's arrival in Los Angeles. I admit I watched it because I was curious about her and I like train wrecks. It was bad and silly, but Posh was slightly smarter than I gave her credit and I was slightly intrigued by some of her behavior. Posh got caught driving with her Spanish driver's license and had to take the full driver's exam at the MVA. I was actually amazed that a city as large as L.A. makes its citizens take a written exam when I took a computerized version here in Maryland back when I was in high school (many moons ago). However, it was pretty funny watching Posh take a written exam and cheating by asking her personal assistant some of the questions - she got caught by the exam reviewer though, but didn't get into much trouble. She passed the exam and was issued a California driver's license, however, poor Posh stuck with the photo they took and she wasn't too happy about it.

Anyway, Kathy mentioned that Maryland now gives you the option to pick your driver's license photo from either three or five pictures and I was surprised because when I got my last license I didn't have the choice. She urged me to check the expiration date on my license and I found that it expired on my birthday earlier this month. Great, of all the years for it to expire, it had to expire this year when I have no hair. I'll probably go to the MVA Express on Tuesday (never go there on a Monday) with my wig on and plead my "cancer card" if they give me trouble for driving with an expired driver's license. It'll be weird looking at my driver's license when my hair does grown in because it won't look the same. I'll also have a constant reminder in my wallet of this year. Hmm, on the positive side, my license will expire in five years and that's how long it will take me to be considered "in complete remission" if I have no relapses between now and then.

Walking Papers

I received my walking papers this morning, but they weren't sure at first. The lab provided all of the other numbers but my absolute neutrophil (ANC) number, which must reach 500 before I can be released. After the doctors came in for rounds, the NP returned an hour later to tell me my ANC was 1,200! My white cells must have had a big party last night. I silently told them to party when the nurse gave me my nightly GSF shot to increase my counts and the guys must have listened for a change. Yay, white blood cells!

This hospital visit was short and sweet - 4 days instead of 6. I felt lethargic on Wednesday and very weak on Tuesday when I checked in with a fever, but I rebounded Wednesday night after my oxycodone and felt really good yesterday, like I was ready to go home then. You know the doctors, they've got to wait for the lab results instead of listening to me so I had to wait another day. I was actually glad to see Wesley, my phlebotomist, this morning for a change. He was earlier than he had been all week and woke us up at 5:50am. I think I was sort of awake before he came in and flicked on the lights, but Mike definitely wasn't and awoke with a start. He fell back asleep pretty easily, though. :)

Drum roll please.......................ONE MORE ROUND TO GO! I have made it and the finish line of chemo treatments is very close in sight, with round six starting next Friday. I almost can't believe all that I have been through these past four months. I've been thinking lately about when I first found out and how the first round really knocked me out. I believe the second round was pretty bad too. Each round has had it's own unique qualities to "enjoy" but they have gotten easier, instead of harder as I had feared. I also learned to be more prepared each time and drink, drink, drink my fluids. This past hospital stay was the first time I actually ate from the menu instead of living off Boost and bioshakes. I only threw up once and it was probably my own fault for mixing a milky drink with acidic orange juice. I think I even gained either 1.5 pounds or 2 pounds, but I can't remember if I was 125 or 126 when I arrived. I'm now at 127.5. It's almost time to celebrate!

Ups and Downs

I was so nervous about getting an IV that I took two ativans before I got here. However, I really lucked out because my nurse, Okee, is a 17-year IV Therapist veteran and knew how to start an IV. She was so good, in fact, that I asked Mike (because my glasses were off) if she had poked me to draw blood or did she start my IV. He asked what the difference was (one hurts more). She mentioned something about putting a lock on it so I could head downstairs for a chest x-ray. That's when I realized she had started my IV, and I hadn't even really noticed! Once I put my glasses back on I was able to confirm. God bless Okee. I will ask for her next time I need an IV started in the day hospital. Okee has been my nurse in the past, but only on my pit stop days and I hadn't realized her hidden talent.

I stayed in the day hospital for a couple of hours so they could start my antibiotics quickly and bring my fever down. I'm now in my room here and it's not bad, but the bathroom is a little far from my bed and I have to plan my trips there a little more carefully. Neither of us slept well last night. Mike was too hot because the room freezing when we arrived and they turned the AC down too much for him. I kept having high fevers and they kept bringing me ice packs to cool down. I was worn out this morning and tried to go back to sleep after Mike left for work, but the nurse kept coming in to give me saline or antibiotics. Around 10am my team came in to update me on my status, but after they left I felt like I didn't know anything. I did recommend that they give me the antibiotics again on my next round because it really kept the skitters away, which helped keep me more hydrated. I broked out in hives a couple of times from the antibiotics, but it wasn't that bad and I'll take the hives for the skitters anyday! I don't know if I NADIRed today because they didn't use that term. Nurse Practioner Karen McGuinn always tells me if I NADIRed, but she wasn't here today. I've been trying to get a copy of my report from the nurse all day and when I tried again from my night nurse, I found out that the computer is out of service for about two hours. I guess I'll ask again tomorrow.

I felt pretty blah all day today with no energy. I tried to read a book, but found it hard to concentrate so I watched tv instead. A cxouple of hours ago my back and legs really started to ache so I asked for a double dose of oxycodone. It took a while for it to kick in, but it finally did and now I feel so much more energetic. Mike says I'm acting like I do when I take prednisone because I'm talking fast and loud. I was chatting a lot with my new night nurse and felt like I couldn't stop talking.

Mike brought back a chocolate coconut brownie from his Balducci's exercusion with my brother.
This brownie was amazing and I know this because I actually ate half of it. I doubt I would have been handle the chocolatey richness before I had taken the oxycodone, but I think the oxycodone gave me an appetite and was able to thorougly enjoy every bite of the brownie's rich, gooey luciosness. Mmmmmmmmm, good! I also ate my dinner and finished two glasses of ice tea. Thank goodness for the oxycodone buzz tonight.

Our day here is winding down and we watched some pretty bad stuff on tv because there's nothing else on tonight. We watched "So You Think You Can Dance" and then "Don't Forget the Lyrics." There's nothing else on. Mike's watching the Tour de France as I write this. All of my favorite tv show are on summer hiatus and it's been difficult finding something to watch, especially since I'm home all day. I'm not a Martha Stewart fan, but I tend to flip between her show and Rachael Ray's. The repeats have been so bad that I once saw Joey Fatone and Apollo Anton Ono on "Ellen" when I was waiting for phlebotomy, and when I had to wait in phlebotomy again two or three weeks later, the same show was on tv! However, I draw my line at the soaps and refuse to get caught up in any soap opera. I just can't do it because the same characters are having the same problems they were having when I watched back in high school.

It's almost 11pm and I'm off to bed now. I hope we sleep better tonight.

I Made it to Tuesday

Sadly, my temperature has spiked at 101.3 and I have to head to NIH any minute now. I'm taking my Ativan on the way to calm my nerves and I don't care what the nurses say. She was a mean nurse last time who told me I didn't need any medication. I'm bringing my own and taking it in the car.

I hope to follow the same trend and be out by Friday. I'm definitely neutropenic today and may even be NADIRing, which is why the fever spike.

Woo hoo!

It's Monday and I'm still home! My temperature has been about 98.7 all day and I haven't had any other real problems. I definitely feel weak, but it's manageable and Mike stayed home with me today just in case I had problems. He's been very helpful fetching me water and food and taking care of me. I do have to go to NIH, but just for routine bloodwork that I need twice a week anyway. I will have to wear a mask because I'm still neutropenic even though I'm home, but I'd rather do that than be in the hosptial. I hope my good luck progresses because if I can get to Wednesday, then I won't have to go to the hospital. My white counts usually perk up by Wednesday and I'm sent home on Friday.

Yay! Go, Doctor Wilson!

The Weekend

Mike gave me a beautiful "circle of life" necklace with diamonds on it for my birthday and a card that made me cry. I really wasn't expecting anything for my birthday this year because my main goal is to get through this and get better, so I really was surprised and touched by his gift. We went to PF Changs, a Chinese-American fusion-type restaurant with Dad, Michael, and Shuanda and were there for a long time because the service was so slow. The food was excellent and I managed to save room for some dessert.

I'm still home for now, but my temperature is starting to creep up to 99.8 degrees. If it gets to 100, I have to call NIH and then possibly head on over there. I was feeling a little weak, but I drank a Boost nutritional beverage and have enough energy where I feel like I can safely take a shower. You don't know how daunting it is to take a shower when you're weak and worried about passing out. I even have a shower chair for days just like this because I get really nervous standing up for even a few minutes. I'll take my temperature again after my shower to see if it's gone down. Cross your fingers...

Thanks

Today's my birthday and I want to thank someone very important to me - Mom. She gave birth to me 38 years ago today and went through all that pain (although she swears it wasn't that bad). She's been through a lot lately with my diagnosis, especially since she works in the oncology field and she knows about cancer. I am grateful for her knowledge, especially in the first weeks when I didn't know what was going on at all. She's talked to the doctors and nurses in depth to make sure I receive the very best care, even threatening to become Shirley MacLaine in "Terms of Endearment" when someone doesn't treat me right. She's helped me negotiate my cancer journey and calmed me when I am afraid. When I'm in the hospital at NIH, she always asks who my nurse is because chances are she either worked with the nurse or possibly trained her. I've met many of her former co-workers because they now work at NIH and each person has told me how wonderful my mom is. Each person also tends to look after me a little better when I'm there because of her. I always feel like a rock star at NIH because of Mom, and for that I am truly appreciative and grateful.

Thanks, Mom

It's Not Fair

I had a very good conversation today with my co-worker, Michell, and it wasn't until I was on my way home (I was grocery shopping) that it really hit me. Michell has a friend who is only 40 years young who has just gone through her second chemo treatment for breast cancer. Whenever I hear of another comrade in this battle against cancer, it makes me sad and mad that another person has to fight this disease. I don't want to be the last person in the world with cancer, but I would truly like no one else to battle this terrible thing and face the darkness and uncertainty that I've been through these past few months. I'm dismayed to hear about Michell's friend and hope the best for her. I now know enough about different cancer treatments to know that her friend will have chemo every three weeks for six months - unlike my six cycles. I'm praying for Michell and her friend to be given courage and strength, but most importantly, HOPE.

On the positive side, my college roommate, Kim, finished up her last round of chemo last month and I hope she's happily growing her hair back right now (even though she confessed that she will miss the quickie showers - I can relate!). My email buddy from Houston (hi, Paul) had his CT scan yesterday and I'm hoping his results are excellent. He's been a constant cheerleader to me and is always making me laugh with silly jokes and funny pictures. He did criticize me for not eating my watermelon properly in the picture because in Texas they eat it like corn on the cob with the juices running down your face. I didn't have the heart to tell him that ever since I had my braces, I cut my corn off the cob. I better turn in my Texas family card now!

I managed to make it to the gym yesterday for a little bit to work out with my trainer. I've been trying to work out with Tom during my good weeks, but it's been very sad to see my strength and stamina levels so low. I was pleased that I only got a little light-headed once yesterday (compared with three times last week) and was able to press 30 pounds instead of 25 pounds. Before I got sick, I was starting to develop nicely sculpted arms and was able to press about 40 pounds. I was also able to dead-lift 100 pounds, but now I can only manage 25 pounds. I really do understand that my strength is down, but it's still difficult to see that I'm basically back to where I was more than a year ago. Once I am done with my treatments, I truly plan to build back up and get back to where I was. I don't plan on playing volleyball this fall, but next spring I will return! I just finally figured out how to hit the ball after all these years! I might be able to try a little light rock climbing in October as well because I can climb as high as I can manage. Maybe I'll even ask my rock-climbing nurse practitioner to join me at the gym. He can see me not sick for a change.

Things I Think About

Here's another picture of me from the Fourth of July enjoying some tasty watermelon. I'm all decked out in my patriotic bandanna that Brian and Gail so thoughtfully bought for me to wear on the holiday.

I had a crazy night last night with lots of hot flashes and wacky dreams. My dreams from April and May were mostly dark, sad dreams that seemed to be what I thought about as I was sleeping and wishing this terrible disease had never happened to me. Last night I noticed that my dreams aren't quite as dark and I'm relieved and happy to see that I can have some decent dreams now. I dreamed that my brother and I were at the grocery store together and we we were mad at each other for some stupid reason. At one point we were chasing each other down the aisle and I got hit in the back. I thought he threw something at me and woke up only to find that it was Mike! He rolled over in his sleep and elbowed me in the back - youch! I thought about the dream with my brother and that's when I realized that it was just a crazy dream and not dark or scary or sad. I felt relief in knowing that maybe my subconscious mind is starting to tear away from some of the dark thoughts. I really thought I'd never experience a "light" dream again and last night gave me hope.

A Picture of Me

If you haven't seen me yet with my new short (nonexistent) hairdo, I finally have a picture for you. That's my infamous cousin, Gina who makes the best food in the world on the left from her visit last month. Mike calls me his Harley chick because I look like a rough, tough motorcycle girl now. Hmm, maybe not with the pink scarf and polo shirt! LOL! Gosh, I miss having Gina around right now. She's going through a tough time herself right now because one of her dear friends is also battling cancer and my heart goes out to her. Hang in there, Gina, I'm praying for you and thinking about you.

Blechy day

Thank goodness for Zofran because I woke up feeling quite nauseous today. This is when it begins, but at least I have my Zofran/Compazine one-two anti-nausea punch to quell this feeling. I head over to NIH in a bit for my last day this cycle and I'm looking forward to removing this bag from around my waist so I can finally sleep without having to adjust myself all the time. Michael is taking me there and Mike's picking me up and rumor has it that my brother is actually on his way right now, which means he might be on time for a change! He certainly takes after my mom and is usually always late to everything. I lie to both of them about what time I need to be somewhere because I can't be late for my treatments and it's the only chance I have to get there on time. I'm certain he's coming over earlier so he can get some of Jeff's delicious apple pie!

Does anyone have any good books they recommend? I've been tearing through a bunch of books lately, but I want something new and interesting to read. I've read a lot of "chick lit" books and a very good book about leoprosy in Hawaii, but I want something else to read. I am currently reading the book, "Why I Wore Lipstick to my Mastectomy" about a breast cancer survivor and it's very good. I think I'm up for a novel or something now.

It's Hot Hot Hot Today!

I think it's officially summer in DC with temperatures near 100 degrees. I urged Mike to take the RAV to work today because he'll be stuck in traffic and I'd rather him have air conditioning if he's going to be driving for an hour. That meant I drove the Escort to NIH today and the air conditioning isn't really working. Luckily I only had a 30 minute drive to NIH and traffic wasn't bad on the way home, but it certainly is HOT. Normally the air conditioning at NIH makes me freeze, but it felt really good today. I also drank about 4 cups of ice water when I arrived. Everything looks good for this round. I go back tomorrow for my last day of chemo treatment. After this I have one more round to go!

I can't believe I'm nearing the end of chemo and sometime soon, I'll get some hair back on my head. Of course, I'm kind of enjoying not having my full head of hair right now in this heat. I've gotten used to the stares of strangers and never wear my wig because that would be stifling today. I do plan to wear my wig when I return to work because my casual headbands definitely don't give off a Proposal Manager vibe. I might wear some of my dressier headbands to work as people get used to seeing me again, but for the first few weeks I'm wearing my wig. Let's see how many people don't even recognize me because the hair color is darker than my own and it's short.

I've been studying my cancer "cookbook" for some ideas of food to eat next week when I'm neutropenic. I'm really crossing my fingers that I don't go to the hospital. If anything, I just simply want to give my poor arms a break from all of the IVs. I really dread them now because I'm starting to become a "hard stick" and as I've said before, it's no fun. I'm looking forward to starting the antibiotics on Wednesday to see if they really work and in the meantime, I really need to make sure I stay hydrated, especially in this heat.

I'm very jealous of my Nurse Practitioner, Doug Matthews, because he's going to Colorado next week for a week-long rock climbing vacation. I don't know if I'm ready to climb in Colorado (especially not now), but it sounds like a fun trip. I would like a vacation and while I've been out of work since April, it certainly isn't vacation. I long to do something fun and go somewhere fun and sit on a beach or travel somewhere where I can relax. Mike and I are planning a nice vacation next year for our 10 year anniversary/1 year anniversary from cancer and I'm really looking forward to it. I'm leaning towards Venice, but we can go wherever as long as it's vacation. I really do want to go to Europe somewhere since Mike's never been, but I'm totally open to other ideas from Mike.

One last thought about my upcoming birthday on Friday -- the thirteenth. I feel very lucky this year that I'm here to celebrate my birthday, especially when I looked at the cancer survival rates yesterday. I also read that Beverly Sills and Joel Siegel recently lost their lives to cancer. I also read in the obituaries yesterday (I really try not to read the obits these days) and a young woman of 42 recently lost her life to breast cancer. It truly humbles me to still be fighting Priscilla. She might have surprised me, but I'm not letting her take over my body. I do get down sometimes because I know that I will be looking over my shoulder for the rest of my life, but I will try not to let this rule my future. I will be happy from now on to have a birthday to celebrate, instead of moaning about being another year older. I am lucky and blessed.

(Whistle) Click Click Whir

Day two, round five of chemo is going well so far. The battery pack clicks and whirs (with a slight whistle too) that I notice every so often when I'm quiet. I survived my first night this round of sleeping with my fanny pack, although I experienced some fierce hot flashes last night. Mike says it's like sleeping with a heating pad so he doesn't sleep well either during this time. I always get hot flashes during chemo and then they subside a little afterwards. I woke up drenched in sweat the other day, which is not a fun experience. Sleeping with my fanny pack on always takes some getting used to because I have to be careful if I turn on my side in my sleep and the bag is a little heavy too.

I've been eating well today and am snacking throughout the day while I'm still really hungry. I always hope to gain five pounds during chemo treatment because the prednisone makes me hungry, but I never seem to gain more than two pounds at best. I'm working hard to gain some weight! I think my aunt was surprised when she saw me on Wednesday at how skinny I've gotten since she hasn't really seen me since May. I try to wear clothes that don't hang off my body because they emphasize how skinny I am, but it's hard since most of my clothes do that now. Cousin Gina gave me a pair of her jeans and they actually fit me right now so I wear them more than my old jeans. I don't know what I'll wear when I return to work because I don't want to buy a bunch of new work clothes because I know I'll be gaining weight at some point. Gail says I should go to the thrift shop for new clothes and I probably will do that so I have something to wear that actually fits. I did buy a pretty new turquoise blazer last week and I made sure it will fit me later too. I plan to wear it on my first day back at work because it's a really good happy color.

My pit stop at NIH went really well and the nurse was really fast. I really felt like I was in a NASCAR race because she was so quick! I've never had her before so we didn't chit chat like I do with Vanessa, Sondra, or Yvonne. I did see Leslie, but she wasn't my nurse today. I also didn't see my fellow EPOCH patient, Steve, but he was at NIH almost two hours before me. I think I took longer in procedures yesterday because they were having some problem putting in my IJ line. Steve also gets in line before I do so they take him back to the operating room before me. He has to drive five hours back home on Tuesday so I'm happy he gets out two hours before me. I usually have to be at NIH at 3pm for my pit stop, except on Tuesdays, when I have to arrive at 1pm for my last dose of nasty chemo. I get rituxin on Friday and have to stay all day in case I have bad reaction to it and I get cytoxin on Tuesday and I could have a bad reaction to it too. They also have to pull out my IJ line on Tuesday and then I have to wait 30 minutes after that so I don't bleed to death when I stand up. I never get home until around 6pm on Tuesday.

A Little Woozy

We just returned from our full day at NIH. It's an absolutely beautiful day here with warm sunshine and low clouds and traffic is still fairly light because of the holiday week. The gate guard made sure to ask about my CT scan results since I told her yesterday I would be finding them out. She was super excited for me and proud of me too. She's always been really nice and friendly and I look forward to seeing her each time (I wish the CT technicians were as nice as the gate guard!)

I met up with the old EPOCH gang in special procedures at 7:30am. All of our orders were lost in the computer so we all had to wait until they found them. Bob was the first guy called back for his procedure. I've seen Bob before but hadn't met him officially. He doesn't carry around a nice small fanny pack like Steve and I do, he has something that looks like a briefcase that he has to carry around because he has twice as much chemo as we do. Steve's tumor has also shrunk from 10cm to 4cm so we were both congratulating each other on our successes. Steve was next for his procedure and I had to wait until they finished up with either Bob or Steve because they only have two rooms. I had the same doctor as last time, but I remember her voice more than her face! She had some trouble putting in my line because of where it goes in my chest/neck area and because I'm so small-boned. Thankfully I was relatively calm because of all the ativan I had taken this morning and the lydocane they use to numb the site. It was a little difficult lying there on the bed listening to them discuss me, "Push it in. Stop. Back out. Okay, push it in again. Give me a different gauge line, please." I couldn't see anything because they draped a sheet over my face, but I can hear muffled discussion. The ativan keeps me from freaking out and being tired also keeps me from freaking out too. They finally got it to go in and I was done at 11am.

Mike loaded up my wheelchair with my very large file, my day bag containing socks, crossword puzzles, and book, and wheeled me up to the day hospital for my first dose of chemo meds. I ordered lunch and as soon as I ate, was quickly asleep. Mike watched tennis and did his crossword puzzle while he watched me doze in my chair. We finally finished the rituxin chemo med and they loaded up my fanny pack with the chemo colada cocktail. We left for home, but had to stop in "wait here until you die or your prescription is ready, whichever comes first" pharmacy. I have huge shopping bag of drugs, including two new antibiotics that I start next week to stop the skitters. I bought an am/pm pillbox several weeks ago so I can fit in with the senior set quite well. We can compare meds!

I'm back at home deciding whether to have some apple pie or take a nap - or both! Mike just left with Eric to go sell Eric's boat in Gettysburg and won't be back for a while. I've got plenty of time for apple pie tasting and a nap! I've also got German chocolate cake calling my name. I'm sure I'll eat both before the day's over - I need the calories since I now weigh 126.

Naptime is truly calling, but first PIE!

Results are in

The doctors are pleased with the results of my CT scan. Evil Priscilla has gone from a 14 cm tumor to a 7.5 x 3.3 cm tumor - almost 50% smaller than she was in April. Some of that could be scar tissue that may never go away, so she could be even smaller. She's not dead, but I'm throwing some serious buckets of water on her to get her to melt like the Wicked Witch. I admit I was hoping the tumor would be even smaller, but at least it is shrinking and the chemo is working. Other good news: Priscilla was compressing my superior vena cava, but she isn't any longer. My lungs look clear and a previous liver lesion has resolved (didn't even know about that). I have normal liver, gallbladder, adrenal glands, and pancreas. Priscilla is still causing problems by compressing my innominate vein (I think it's on the left of the heart).

I start my fifth round tomorrow and my sixth round on July 27. I'll have another CT scan and a PET scan on August 16 to see what's really going on in my body. The PET scan takes a couple of hours and it will "light up" any part of the tumor that's still active. Any scar tissue that I have will not light up during the PET scan. I'm not sure what happens after August 16th, but I have a clinic day that day and I'm sure they'll tell me then what my schedule will be for the future. I know I'll have CT scans every three months for the next year, but I don't know what else to expect.

I had a good holiday yesterday and we have tons of leftover food and dessert. We ended up with four desserts - Jeff's apple pie, Anne's German chocolate cake, Carol's cake, and Sophie's cake. I ate really well yesterday and enjoyed some watermelon (it has skin on it so I can eat it). Mom made potato salad at my request and I have some in my fridge for later. We had burgers, grilled chicken, orzo, potato salad, ambrosia, salad, kinishes, corn on the cob, and a veggie tray. I dutifully avoided the veggie tray and salad, although they were tempting.

It's getting harder not to eat salads because this is the season for them. I recently saw a salad on a menu with dried cranberries, walnuts, and goat cheese - my favorite kind of salad. I adore goat cheese and cranberries on salad and used to bring the ingredients to work for lunch. I have a feeling that I'll be eating this at work when I return (as soon as the doctors give the okay). Yesterday's salad looked really good with shredded carrots, butter lettuce, black olives, cucumbers, and a cranberry walnut vinaigrette. Sigh...salad envy!

I have a massage today at 2:30 and I'm really excited about it. My back started to hurt yesterday from all the cleaning and prepping I did for the barbecue. It'll be nice to pamper myself today since I start chemo tomorrow. I remember thinking last night as I was drifting off to sleep that it will be a few days before I can simply sleep in whatever position I want because I'll be wearing a heavy fanny pack around my waist until Tuesday. I usually have to sleep on my back during chemo and again when I'm in the hospital. I will also have to pre-plan every shower until Tuesday because I have to cover the line placement on my chest with an aqua guard, put the fanny pack in a plastic bag, and hang it on the shower wall so it doesn't get wet.

The doctor told me again today that they're going to try a new antibiotic regimen, which I will start on Wednesday, to keep "the skitters" at bay next week. The antibiotics should hopefully ease my dehydration issues and possibly keep me out of the hospital. I'll still be neutropenic, but I would be at home instead of the hospital. If I get a fever, I will have to go to NIH immediately. I need to think of a shopping list of food I can eat while I'm neutropenic and prepare my frozen slushies that I typically eat in the hospital. I also need to gather a list of people to take me to the hospital in case I need to rush to NIH.

Changes

As of yesterday, July 2, my company officially became part of Honeywell. I'm still learning what Honeywell does and from what I gather, we do a lot. My division will still focus on logistics and providing support to the Marines, Army, Navy, and Air Force. We provide support to the troops and I've always been proud of our work because we do make a difference in helping and protecting the troops. I'm anxious to learn more about Honeywell's programs and what they/we do for our troops.

I've been through several acquisitions before with my old company and am glad I haven't been at work in the last month because I know the initial fear when the announcement is made and then the subsequet rumor mill of what will happen because of the acquisition. I've thought about it at home, but I didn't have to live the experience on a daily basis. After talking with Human Resources and my very understanding and kind boss, Pat, I will return to work as a newly minted Honeywell employee on September 4th. I better learn all I can about my new company in the meantime so I will be prepared to talk about how wonderful we are in my future proposals. I miss my coworkers and am looking forward to seeing my group again and catching up with them on their lives while I've been home.

Today, as I was organizing all of my various cancer/lymphoma information, I ran across this statement and wanted to share it with you because I think it will become my new philosophy on life, "Love everyone you can and express that love outwardly. Mend bad relationships, and don't let cancer stop you from reaching out to new ones. Love what you do and don't waste any more time than is necessary doing things you don't love."

I think everyone should reflect on this statement because life is too short to waste. I personally plan to rethink my priorities and only do or say yes to the things I truly love or want to do. I've spent my life doing things that I didn't really want to do, but agreed to do them because I didn't want someone to not like me or I didn't want to cause any problems. I want to spend the rest of my time here on earth loving what I'm doing and not wasting time doing things I don't love. I also want to make sure my family and friends know how much I do love and appreciate them.

Tomorrow is July Fourth and I will be grilling and celebrating. I have a feeling the fireworks are going to be more impressive to me this year than ever before and I can't wait to see them. Usually I'm too busy selling glow necklaces or making funnel cakes with the Jaycees to really watch the fireworks, but this year I'm just going to watch and enjoy them with friends and family. A local real estate agent came by over the weekend and put flags in front of everyone's mailboxes and our neighborhood looks really festive. I really love July (but maybe because my birthday's next Friday!) and am going to enjoy the heck out of this holiday, especially since my next chemo round starts on Friday.

CT Scan Fever II

That was an ordeal. Traffic was really light due to summer vacation and everyone in town taking the 4th of July week off from work so we got to NIH really early. Phlebotomoy only took 15 minutes and I arrived in the CT scan area at 8:15 for my 9am appointment. I sat and waited until 9am and then re-signed the waiting list. They handed me my super delicious berry-flavored barium to drink, which looks like watered-down glue. There were quite a few other people with barium and we were all making faces at each other as we drank. I noticed they had banana-flavored barium so maybe I'll try that in three months just for something different.

I was ushered to the back around 10am and handed a paper top and bottom to change into and given directions to the bathroom so I could change clothes. I asked for a medium and the pants were so HUGE that I had to hold them up when I walked down the hall. After I changed, I sat in a different waiting room with the same people I had seen in the main waiting room - except they had gone in before me. We were all waiting for IVs. I finally got into the IV area, and it went as well as I feared. My veins are starting to not work so well so she had to try twice. She was really nice and gave me some time in between sticks to breathe and she worked with my mom to find a good vein. After I finished with the IV, I went back to the waiting room to wait for the actual CT scan. Around 10:40, I finally made it into the CT scan room but I had to wait again because my orders had been cancelled so the tech had to go straighten that out before they could begin. The techs were not very friendly or helpful. I'm glad I'd already had a couple of CT scans back at Fairfax Inova because the techs there were friendly and explained what would happen before it happened. These techs didn't tell me anything and were barking orders at me, "lay down, put your knees over the cushion..." I was not impressed. Most of NIH is very good, but then I find pockets of departments where they just aren't people-oriented. I'm always amazed because we're all there because we're sick and you think they'd be just a little nicer.

I finally finished with the CT scan at 11am and went back to the waiting room to get my clothes from mom so we could go home (and have lunch). Mom and I ate at Hamburger Hamlet on the way home because I was starving. I hadn't eaten anything since last night and I couldn't wait any longer. I ended up picking the celery out of my tuna sandwich because I didn't know it came with celery. I'm not too worried since I'm not neutropenic this week, but I need to pay more attention in the future. I also enjoyed a big glass of lemonade and a few french fries.

I won't know the results until my clinic day on Thursday, but I'll post them as soon as I get home that day, which could be a little later because I scheduled a massage for Thursday afternoon. This time period before I start chemo is my only time when I am able to have a massage and I need a little pampering now and then because when it's rough, it's really rough.

CT Scan Fever

I have my CT Scan this morning to determine how big, or hopefully how small, the tumor is now. I'm nervous/anxious/excited. I'm mostly nervous about the IV, but am anxious and excited to hear about the results. I hope Priscilla, my tumor, is the size of my pinkie nail or totally gone.

Mom's taking me today and she's actually here on time!