Thursday, May 29, 2008

Whew…..whirlwind couple of days.

A lot of things have happened in the last couple of days and I have been so busy I have not had time to update the blog.

Friday – I went to the oncologist and got some great news. The tumors have shrunk – Woo-hoo!!!! Finally some good news from the doctors! I am officially off chemo for 6 weeks and will have another scan at the end of that time and if the tumors have not grown again I will have another 6 weeks off. There is a light at the end of the tunnel. Not to get out of chronological order but yesterday I went to a pain specialist and I will be starting nerve blocks for the pain next week for 5 weeks. We are hoping it will take away a good bit of the pain, which will be a nice relief. These start next Tuesday before I leave on my trip.

Saturday to Monday – I went on a parish weekend with my church to Orkney Springs VA. At first I was not sure I wanted to go and then another family asked me to go and paid for me. I had a great time. It was nice to catch up with so many people and it was very relaxing. I took lots of naps (after each meal) and got some knitting done. It was the perfect precursor to the trip.

Wednesday – I went to the Sheryl Crow concert. I took a friend that just graduated from high school. It was the first concert she attended. We had decent seats about 30 rows back to the left of the stage. Then a friend showed up and offered us better seats that they were able to get through the band. The seats were in row K and right in the center. It was awesome. She played a mixture of new and old songs and of course my favorite: Soak up the Sun.

The only bad thing that has happened that is a pain is I have a cold. I thought first it was allergies, but it is obviously a cold and I am pretty congested. I am going to get plenty of rest so I am all better in time for my trip.

Wednesday, May 21, 2008

Amazing Angels

I continue to be amazed by the giving nature of so many people in my life. As you all know my trip is fast approaching – only two more weeks. The plans are really coming together and we are getting very excited. Last week the travel agent informed me that we are flying first class! Since we leave at 6:10 am we decided to stay at a hotel near the airport Tuesday night so we don’t have to worry about getting picked up at 4:30 in the morning. When I talked to the travel agent she told me that my “benefactors” were also picking up the hotel room, which we did not expect. In addition, we have signed up for a Snorkeling Sunset Sail which is also being paid for. Their generosity is overwhelming. Yesterday the travel agent called with more good news, and I could not imagine anything more than we have already been given, but someone has given $200 each for both Sara and I to go to the spa while we are in Aruba. Can you imagine such a gift?

I am still getting wonderful meals provided by the church twice a week. It is such a relief to come home from work or treatment to not have to worry about fixing dinner. My “angels” are truly amazing.

Monday, May 19, 2008

Crisis Averted

As I am preparing for my trip, I could not find my passport. I started getting very stressed and ripped apart my home office yesterday looking for it. Finally when I could not find it I looked on the web to see how to get a replacement passport. I ran to the mall and got passport photos taken and then realized that there is not enough time to go directly through the Department of State and I would need to go to an third party agency and pay through the nose. Last night I could not sleep and kept tossing and turning aver whether or not I would get a new passport in time. Somewhere in the middle of night I had an epiphany of where the passport might be. Well, I have great news I found it!!!!! I am so relieved, now I can get on with the other preparations for the trip. Only 16 days left.

Saturday, May 17, 2008

I have hair

It is true it is growing. For the last couple of months it will grow a little stubble, but then it would fall out again. It has been about a weeks worth of growth and have about 1/8 inch. I talked to the doctors about it last week and they said stranger things have happened. I hope that it sticks around this time and continues to grow.

I have been thinking a lot about my diagnosis this week and I have decided it is all BS. In January they told me 6 months. Well it has been 5 months so far and I am doing well. I am determined to beat this one more time. Third time is a charm and I want to survive this - bad prognosis or not. I am tired all the time from chemo and feel like I could sleep 20 hours a day, but I think that is to be expected with how hard my body is working. Everyone says I look good and have good color. I guess I am starting to feel hopeful. I went to the pulminologist on Wednesday and she said my lungs sound great.

In the last couple of weeks I started thinking about the future. I spent a lot of time in the garden planting flowers. I put in quite a few perennials. I don’t know what this all means, but maybe I will get more time at least, but as I said in my speech on Tuesday, I live for each day.

Wednesday, May 14, 2008

Beautiful Sunny Day

Yesterday was a great day. The LIVESTRONG day was awesome. We would have liked to have more people attend, but I believe that those that attended got a lot out of it. I was really nervous about my speech and appreciate all those who helped me with it or just helped me calm down on Monday night. Although, I did not memorize it and read from the paper, I think the speech went really well. It was nice to learn more about LIVESTRONG and the Lance Armstrong foundation as well as area resources. I got pumped up with all the support that is out there.

Speaking of support, I am constantly amazed by the support I get through my friends and especially through St. John’s. I am so blessed to have so many people that care and I want to express my gratitude to my latest benefactor. You know who you are and I thank you for the financial support. The medical expenses and past debt can be daunting and I appreciate your gift.

Only 21 days till Aruba. Sara called me the other day to tell me the temperature in Aruba at most times. We are both getting very excited. I went shopping and bought some clothes that actually fit. This is good and bad. It is nice to have some new clothes that look good and that I am not uncomfortable in, yet now I am not really motivated to lose weight and I have been embracing my gluttony with brownies and ice cream with lots of fudge sauce.

Monday, May 12, 2008

Rainy Monday


Even though it is raining, today is a much better day than Friday. As many of you have commented, I was really was having a bad day. My eye is getting better. The antibiotic must be working. It is not swollen anymore and it does not hurt. I go to the eye doctor on Wednesday. I am pretty sure he is going to lance the sty.

Tomorrow is LIVEstrong day. I was asked to say a few words, but I have absolutely no idea what to say. I better figure it out pretty soon, or else I will be winging it.

Friday, May 9, 2008

In a bad mood :(

Well it is official. I have an infected Sty in my eye. Let me tell you this is a painful thing and it is really pissing me off. I am so sick of these additional problems that creep up, it makes me angry. Aren’t I going through enough with the chemo induced nausea and exhaustion? I am starving in the mornings, but don’t want to eat anything because my stomach is too queasy. I am tired all the time, but having trouble sleeping without waking up. I can’t seem to get comfortable. I have mouth sores because of the chemo and my tongue is sensitive to food, heat and cold. I know this is a bitch session, but I think I deserve it. I am fed up. I deserve a break. I know my trip is a silver lining and something to look forward to, but today sucks.

Thursday, May 8, 2008

One thing or another

I am not feeling queasy this morning, but now my eye is bothering me. Yesterday, my left eye started burning me and would hurt if I rubbed my eye. Today it is much worse and somewhat red, swollen and painful. I am going to the doctor this afternoon. I am hoping it is just allergies, but I am afraid it is pink eye. That is the last thing I need. Geez - If it is not one thing it is another. Keep your fingers crossed that it is just allergies and not anything worse.

Last night Jen came over and I did a mini fashion show of my swimsuits for the trip and the new clothes I bought. Just think - four weeks from today I will be sitting on a beach :)

Wednesday, May 7, 2008

Countdown to the trip!!!

I am getting so excited about my trip. This month can’t go fast enough in my world. Sara and I have talked about the excursions we want to take and after talking to others who have gone to Aruba we are thinking about a Jeep tour around the island and a Happy Hour Snorkeling Sail. Thinking about the trip and the fun that we will have is almost making up for the queasiness I feel everyday. The good news is that chemo will stop next week until I get back. I have one more infusion chemo and the pill is 6 weeks on / 6 weeks off. The timing is working perfectly. I have hung up a count down to the trip on my cubicle at work. Only 4 weeks from today, I will be sitting on a beach with my biggest worry being what drink I will order next!!!

I have been very tired lately and have been asleep by 9:30 that last few nights. Course I am not sitting back and taking it easy. I am trying to work full-time, although I worked a couple half days this week. I also have been doing some gardening. My house looks atrocious and I really need to pick up the clutter and put away my laundry. It is convenient to have the laundry basket right by the bed when I get dressed, but it makes more sense to put stuff away. I feel like I am being lazy, but in reality I am not taking it easy enough.

LiveStrong Day - Come and Join me!

Howard County Executive Ken Ulman Proclaims
May 13 LIVESTRONG™ Howard County

Wear Yellow & Join Us on May 13 at 11 AM
at the Lakefront in Downtown Columbia

LIVESTRONG™ Howard County Activities:
· Remarks by County Executive Ken Ulman and others
· Raffle: Autographed Lance Armstrong memorabilia and more!
· LIVE music
· Box lunch special available at Clyde's & Tomato Palace
· With a $10 donation to the Lance Armstrong Foundation you will receive a coupon to Clyde's or Tomato Palace for 20% off from May 12 - May 18, 2008.

To participate in LIVESTRONG™ Howard County:
· Sign-up (contact Tessa Goldscher - tessa@ulmanfund.org or 410-964-0202 x103)
· Wear yellow - take a picture and email it to tessa@ulmanfund.org
· Attend lunchtime lakefront gathering - pick up your LIVESTRONG™ wristband & hear about the progress we're making in the fight against cancer!
· Make a donation to the Lance Armstrong Foundation in support of LIVESTRONG™ Howard County.

More about LIVESTRONG™ Howard County

WHAT: Wear yellow and gather around Columbia's Lakefront in support of those affected by cancer. Join the Ulman Cancer Fund for Young Adults, to show support and raise awareness.

Bring your lunch or visit a participating restaurant and enjoy live music.

LIVESTRONG™ Howard County will support LIVESTRONG™ Day, the Lance Armstrong Foundation's (LAF) one-day initiative to unite people affected by cancer and raise awareness and funds for the cancer fight.

On May 13, more than 500 LIVESTRONG™ Day events will take place in communities across the country to raise awareness and funds to support the fight against cancer.

Learn more about LIVESTRONG™ Howard County.

WHERE: Columbia Lakefront (Lake Kittamaquandi)

WHEN: Tuesday, May 13, 2008, at 11:00 AM

WHO: Ulman Cancer Fund for Young Adults, County Executive Ken Ulman, Young Adult Cancer Survivors, and local businesses and organizations

WHY: Unacceptable gaps exist between what we know about preventing, screening for and treating cancer and what we do. These gaps in action are responsible for 180,000 of the 560,000 lives we lose to cancer each year. United we will make cancer a national priority and end needless death and suffering from the disease.

About the Lance Armstrong Foundation
The Lance Armstrong Foundation (LAF) unites people through programs and experiences to empower cancer survivors to live life on their own terms and to raise awareness and funds for the fight against cancer. The LAF focuses on cancer prevention, access to screening and care, research and quality of life for cancer survivors. Founded in 1997 by cancer survivor and champion cyclist Lance Armstrong, the LAF has raised more than $250 million for the fight against cancer. Join 60 million LIVESTRONG wristband wearers and help make cancer a national priority. Unite and fight cancer at LIVESTRONG.org.

Monday, May 5, 2008

Crazy Weekend.

This was a crazy weekend. Saturday I left my house at 7:30am and did not get home for the day until 10:00pm.

It started out patronizing my mom’s garden club plant sale in Ellicott City. Here is a run down of my schedule for Saturday.

Saturday
6:30 Got out of bed (couldn’t sleep any more)
7:30 Left house
8:00 Garden Cub Plant Sale
9:00 Helped set up for St John’s plant sale
10:15 Back to Garden Club plant sale to deliver Mom some plants from the St John plant sale.
10:30 Visited a friend, another visit to Plant Sale and went to store
12:30 Drove to Baltimore City to visit another friend to see his new house
2:30 Drove home
3:00 Plant flowers in the back yard
4:30 Went back to the Beekman’s to see the prom gathering and helped serve dinner
10:00 Finally got back home
11:00 Went to Sleep

Sunday was more laid back. I was exhausted and paid for my active day on Saturday. I took a nap in my hammock after church and got my first sunburn on my head. I was a little chilly in the shade so I turned around and had my upper body in the sun. I was wearing a knitted hat that I made. The stitch is very loose. I love the hat because it provides cover to the head but has lots of air holes. Well, I found out that those air holes also allow sun in. I have a nice checkerboard design on one side of my forehead and head of really pale skin and sunburn. It is definitely a sight to see. After my nap I spend some time in the garden. Even though I wore a hat, my face got some sun and I have a very red nose this morning.

Thursday, May 1, 2008

The good and the bad evens out!

These last couple of weeks has been hard on me. The new chemo regimen is getting to me a little; it makes me very tired and queasy. The problem is I never know when it is going to hit. I had my IV chemo last Thursday on top of the oral chemo and it hit me like a wall on Saturday night. Go figure, usually I react much quicker. Last night I was in bed at 7:30 and asleep by 8:15. I woke up for a while at 10pm, but I went back to sleep and slept until 6am.

I took Tuesday and Wednesday off as FMLA days, to go to a bunch of appointments. On Tuesday when I had some free time I decided to run some errands. When I was leaving Target, I misjudged a turn and hit a curb and blew a tire. As soon as I hit the curb, I thought to myself I was lucky a tire did not blow, but once I got a couple miles down the road I quickly realized I was wrong. I was able to make it to the mall parking lot by Sears and get it fixed. Three hours and $179.00 later, I headed home exhausted. Again I am a magnet for the forces of negativity.

There is a silver lining to this story. Last week a good friend came over all excited about something and wanted to know if there were things I wanted to do. I know she was referring to a “bucket list” (as in the movie), but we both hate that term. She told me that there was somebody that contacted her and wants to send me away on a trip all expenses paid. I can go anywhere in the world that Continental airlines flies. I was blown away. Why would anyone do something so nice and generous for me? Jen told me the people want to remain anonymous because they want this trip to be all about me. I feel very un-deserving to receive such a gift, but I am trying to be a better care receiver.

I am having a ball working with the travel agent to plan the trip. We have it narrowed down to Hawaii, Bermuda or Aruba. I think I am leaning towards an all inclusive resort in Aruba. This is bringing a whole new set of activities up. We are going in early June (my friend Sara from college is going with me) and I realized I am going to need a bathing suit and all the trappings that go with a tropical vacation. I can’t wait to go. I definitely need a break where my biggest worry of the day is where are we going to eat and do we sit by the pool or on the beach. I guess that although a bunch of pain in the ass things have happened in the last couple of months, not to mention being sick that there is a lot of good in the world too!