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Susan's Journey

This is Susan's Journey while training for the Solvang Century, Winter Season, 2002

I will be making a journey with all of my teammates to the Solvang Century for the 2001-2002 Winter TNT Season. And at the same time, I will be making my personal journey of treatment for my Chronic Lymphocytic Leukemia. I know that my TNT teammates and staff will support me through both of these journeys.

 
 
Monday, December 10, 2001 at 09:59:27 (PST)

I arrived home late last night from my home in Truckee, California. Diane and I spend several days in the snow skiing and cycling indoors. I was tired this morning and not feeling too well. Some mornings I wake up feeling upset to my stomach. I had a little breakfast and felt somewhat better.

I did the buddy ride with Cyd and Barry on the peninsula. The weather was beautiful, especially after last week with all the wind and rain. I did the 19 mile ride and decided to add the additional 7.5 miles. I felt good at the end of the ride. However, I know that I will be sore on Sunday.

I try to enjoy every day that I can get out on the rode and cycle. I know that there will be days in the future when I may not be up to doing a workout.

I am already thinking about the chemo treatment that I will begin in January. I am trying to mentally prepare myself to be ready to take in the drugs so that they can kill the extra 180,000 white blood cells that are running around in my blood stream.

Until next time!
Susan


Wednesday, December 12, 2001 at 08:18:26 (PST)

Yesterday I did my first interval training for this season. I found an easy flat one mile loop for my 15 minute warm-up and then I did my 5 intervals on Miramar, a hilly street near my home. The first interval I though my lungs would collapse. By the 5th interval my lungs were feeling better. However, my legs felt like putty. It is workouts like this that I question if my health and 58, well almost 59 year old body can continue to train for endurance events.

Last night I attended my monthly cancer support group meeting. This gives me a time to share my deepest feelings of fear, hope and sadness in a safe environment. Last night was as helpful to me as usual. We spent some time dealing with the concept of hope. I shared how I was unable to really feel or talk about hope for several years after I found out that I had CLL. Now, I can say that I do have hope that a cure will be found. And, even if I am not here when that cure is found, I have hope that I will make the journey with dignity. Another issue that I delt with was the anger I feel when some of my friends call or see me in person and they don't even ask how I am doing. I do know that this is not about me; it is about their comfort with the issue of cancer and death. In the future I plan to tell them how I feel so that I can let go of the anger and then they can talk to me about my health issues or not and it won't really matter.

Each day I am thankful for my TNT teammates and their commitment to training, doing an endurance event and most important for raising funds to help find a cure!

Friday, December 21, 2001 at 08:04:19 (PST)

It has been about a week since my last entry. I have been feeling fatigued and I just wasn't able to think about doing anything, including exercising! I did not workout for one week. Finally, I was able to start again. Since I was in Truckee, I XC skied on Tuesday and Wednesday for an hour. It was wonderful being out in the cold air and seeing all the snow. I try everyday to appreciate what I have in my life and seeing the wonderful sights in Truckee makes that easy. I returned home late Wednesday night and since it was raining on Thursday I rode my bike indoors for one hour. I seem to get a great workout doing this. However, it is also very boring. Well, at least I put some time in on the bike.

I have been experience several reoccurring health problem as a result of the leukemia. I have had an infection on my big toe that hurts and itches; athlets foot, and a yeast infection. These are all the result of my white blood cell count increasing to a number in which my immune system has a difficult time doing its job. Also, as I mentioned earlier I have been experiencing periods of fatigue. This is problably the most difficult thing for me to deal with since I am a person who has always been able to keep pushing along longer than most people.

I realized the other day that it would be very easy to just sit back and stop exercising on a regular basis. However, with the support of my partner, Diane and everyone at TNT I keep going. I know that the exercise is good for me and therefore I will continue to attempt to complete each daily workout on my TNT calendar.

Today I go for a blood test. This use to be a very diffucult time for me. I was like a time bomb waiting to go off. I never knew what the results would be. I know that the fear of the unknown is the worst. Now that I know the result will be bad, it doesn't seem so difficult. I will see my oncologist on January 10th and get the results and findout exact when my treatment will begin.

Well I need to go now for that test.

Go team!

Monday, December 24, 2001 at 07:48:58 (PST)

When I was a child we celebrated Christmas on Christmas Eve. We were told that Santa couldn't get to everyones house on Christmas so he came to ours early. We would have a simple supper of home made soup and cookies. Then my grandfather would drive my brother and I to Golden Gate Park to see the buffalo. When we returned Santa would have been there. To honor this memory, this year Diane and I rode from our house down to the Great Highway, through the Park and I visited the buffalo. Then we came home back up Santiago. This was a 20 mile ride with hills all the way home. It felt good to be back on the rode again after all the rain. And it especially felt good to remember the good memories from my past.

Christmas morning we will visit my brother and his family. My dad will be there too. We will have breakfast with them and then will drive to our mountain home in Truckee where we will spend the holidays. We plan to cross country ski for some of our workouts and to drive into Reno so that we can get on the rode to ride.

Yesterday we celebrated the holiday with Diane's family in Placerville. There were abnout 25 people there. Some had bad colds and the stomach flu. Being around sick people makes me very nervous. I am always afraid that I will catch something now that my immune system is not as good as it use to be.

I wish the best for all of you and may there be peace on earth!
Susan

Saturday, December 29, 2001 at 17:00:54 (PST)

I have been feeling tired more than usual. The other day I slept for 12 hours after taking a two hour nap in the afternoon. Last night I had a nightmare about my upcoming treatment. In my dream I was going to the doctor's office to ask questions about the treatment and before I knew it a man was hooking me up to a line to begin systemic chemo. I kept yelling that I was suppose to have oral chemo, but he just kept going. I guess I am getting nervous about my appointment with my oncologist on January 10th.

It has been snowing in Truckee and raining in Reno so I have been X-country skiing for my workouts. I do breath alot going up hills and my legs feel fatigued when I am finished so I guess I am getting a pretty good workout.

Right now it is time to get on the trainer for an hour or so. Guess I can't put it off any longer!

Thursday, January 03, 2002 at 14:31:25 (PST)

This is my first entry for 2002. Five years ago I wasn't sure that I would be here today. Now I am much more optomistic and have hope that my health will improve and that I will be able to continue to ride on the road with my TNT team mates for the entire year.

We just arrived back in SF from Truckee. After spending 10 days in the winter wonderland it was difficult to return to a grey SF and the thoughts about seeing my oncologist next week. I didn't realize how nervous I really am about this visit and the possible treatment protocol until we started driving on the Bay Bridge.

On New Year's Eve day we rode around the outskirts of Reno. It was a 24 mile ride with a good bike lane. The last 7 miles were up hill with several good climbs and only one great down hill run. Diane rode 40 miles per hour down the hill a personal best! Except for serval days on the trainer this was the only ride on the rode for 10 days. We did do several cross country ski trips so I hope we will be in shape for the Danville ride.

As 2002 was approaching I spent time thinking about the things that I have to be thankful for. Let me just list them: 1) good friends 2) basically good health even though I will be beginning treatment for CLL soon 3) Diane, the best partner I could ever wish for 4) all the TNT staff and team mates over the past year 5) the funds that my friends and family helped me raise to help find a cure for leukemia, etc. 6) sweet dog and cat 7) beautiful house in Truckee 8) father, who appreciates all that I do for him 9) and I'm sure that there is so much more that I cant't even think of now.

My hopes for the new year is to continue to practice living in the moment,enjoying every day as if it were my last and to continue to hope for good health and happiness in the future. And finally, I hope for peace for all people. We are a global community and we will never find peace without all people working together.

Monday, January 07, 2002 at 09:10:26 (PST)

Today is foggy and damp and I am glad that this is a rest day for me. Unfortunately, tommorrow has a forecast for some rain and I am hoping to ride down on the penninsula and do at least some of Kings Mountain.

I was very pleased with my ride on Saturday. The 40 mile ride seemed realitively easy. Although, I was tired later that night and through Sunday. I was suprised at how sore my muscles were after this ride. I'm sure it was in part to standing around on the damp cold group during our potluck and presentation. It was good seeing my team mates and TNT staff and coaches. Even though I am nervous about my oncology appointment on Thursday, it gives me great hope and inspiration to be in a group of such committed people.

Wednesday I will have quite a bit of dental work done. I am having two crowns done. My oncologist feels that it is best if I have all this work done before I start treatment.

Send good thoughts on Thursday. I will make an entry on Friday to bring you all up to date.

Friday, January 11, 2002 at 09:14:14 (PST)

Yesterday was a difficult day for me. I woke up at 7:30 and by 8:00 I was a nervous wreck about my visit with my oncologist at 10:15. I kept thinking about my friends who were thinking about me during this extremely difficult morning. Finally, it was time to walk in the office. According to my clood tests, my white blood count has gone from 190,000 in October to 279,000 in December. Last March it was 119,000. This shows that my count has more than doubled in 10 months. The normal count is less than 10,000. When your white blood cells double it is time for treatment.

I will begin a protocol of the drug Leukaran beginning on Monday, 1/14. I will take 13 pills in the evening before bedtime for five days and then take the rest of the month off. I will have two clood tests and see the doctor and then start the process over again for 4-6 months. One possible side effect is nausia. Therefore, I will take two different drugs to help prevent this an hour or so before I take the oral chemo each night.

The doctor is expecting good result from this protocol. He hopes that my white blood cell count will drop to 20,000 - 50,000. Mine has not been there since 12/1996 when I was diagnoised. If this process is successful, I can expect to remain this way for months and hopefully for years. Needless to say, I am hoping for "years"!

I have very mixed emotions about this journey I will be taking next week. Part of me knows that it will be successful. However, there is always a little voice saying "what if this treatment doesn't work for me or it only works for a very short time?" Also, I am concerned about how my body will handle the chemo, as well as, the drugs for nausia. I don't want to feel so druged during the day that I can't function.

I plan to continue training and hopefully I will be able to do so. The good news is that at the present time my treatment calendar seems to fall on weeks when we do not have long team rides. Well, I will just have to take each day at a time and see how things go. I know that I will treasure each day that I can get on bike (on the road or training).

I am looking forward to riding with my teammates at the Cheese Factory ride this Saturday. I know it is a challenging ride but I know when we each remember why we are doing this ride we will succeed.

Thank you to each of you who sent me good thougts, e-mails and phone calls this week. It meant so much to me. And I want to thank my friend Diane Randolf for all the calls and especially the book on dealing with the side effect of chemo. I have already begun to read it in anticipation of Monday.

Tuesday, January 15, 2002 at 18:30:49 (PST)

This is the first entry since I began treatment. Let's back up a few days. Saturday I had a good ride in Marin at the Cheese Factory. It was difficult as always doing the hills. In case anyone has not heard I named the last hill the "fucker hill". It really meant a lot to be able to finish this ride. I was so nervous about my upcoming chemo treatments that I had a diffucult time concentrating on the possitive attitude that I could make it up the difficult hills.

This weekend was hard for me. I tried to enjoy each moment but I would find my mind wandering to the upcoming Monday night. At least I got on the trainer on Sunday and Monday (even though it is a rest day). Diane and I went gambling at North Shore to take my mind of things. Then we returned to our cabin in Truckee.

At 8PM I took two drugs to relax and prevent nausea. They worked. Soon I was so relaxed. An hour later I took the 13 Leukaran (oral chemo) and soon I was sleeping and the next morningcame before I knew it.

Al least this first treatment went well. I was somewhat tired and upset to my stomach. However, I feel better than I expected. I rested most of the day. I really didn't feel like eating much. However, I had "Cherry Garcia" frozen yogurt for dinner and it tasted great. I have been trying to hydrate like I was training for a century ride! It is difficult to drink a lot of water when you feel up set to your stomach. I only have three more cups to drink. Then I will begin the treatment gain tonight. Then only three more treatments this month.

I am looking forward to seeing you all on Sunday at the brunch. I will be there. I'm just not sure how much I will be able to eat.

One last thing. PLease stay away from me if you have a cold or the flu. My immune system will not be working at its best as I do the chemo for the next months.

I was so impressed with the beginning riders on Saturday. Go Team!
Susan

Thursday, January 17, 2002 at 20:23:05 (PST)

It is Thursday night. The past three days have been progressively worse. However, still not as bad as I had anticipated. I did a very easy spin on the trainer Wed. and Thursday for 30 minutes. I felt like I was doing a 40 mile ride! Just in case I am able to continue training for the century ride I feel like I need to do a little now so that I don't lose what I already have.

Today was a difficult day. I felt more nausea and it is progressively getting more difficult to think about eating. The top of the list of my food choices today are coattage cheese and apple sauce and believe it or not broccolli tasted great.

I was very emotional most of the day. It is probably a result of the drugs and also how tired I was feeling. I did play some cribbage with Diane, but I did find it hard to concentrate at times.

I really am not looking forward to taking the chemo tonight. I know that I will feel worse tomorrow. However, Diane reminded me that not long ago there wasn't oral chemo. I know I should feel lucky! And I do appreciate the new treatments for Leukemia and other cancers.

Well, it is almost time to "down" the 13 Leukerans for tonight. At least I continue to sleep well. So good night for now. Have a great buddy ride on Saturday. And I look forward to seeing you all at brunch on Sunday.

GO TEAM!
Susan

Saturday, January 19, 2002 at 16:53:38 (PST)

It is finally Saturday and I have made it through the five night of oral chemo. Today was the worst that I have felt. I woke up at 6:00AM with nausea. I am finally finding out what drugs for nausea work for me. I took two at 6:00 and two more at 2:00. As a result of all these drugs I was able to sit in the car while Diane drove us om to SF.

I slept most of the way in the car and also at home. However, now I am getting ready to watch the Raider games. I hope they play well and I hope I can stay awake to watch the end of the game.

I am still planning on attending the brunch tomorrow. However, there is always a possibility that it will just be too much to do. It seems like if you all can raise the funds and do the training this week; I should be able to get my "butt" over to Oakland. Just know that in case I can not get there my heart is with you all!

I send peace to all people of the world as we celebrate the birthday of Martin Luther King this weekend. br>
Tuesday, January 22, 2002 at 14:57:41 (PST)

It is 2:30PM and I have not taken any anti-nausea medications today. I do feel somewhat "sea sick". However, it is not as bad as it has been the past week. I still don't feel like getting on the bike yet. I am hoping that I may ride the trainer a little tomorrow. I still don't know if I will make it to the Half Moon Bay ride this Saturday. I will be happy if I just get back to normal and can do a little exercise!

Today I sit at the commuter with a heavy heart. I just read the news that Louie Bonpua died this morning. For those of you that didn't have the pleasure to meet him, let me tell you that he was a Today I heard the news that Louie Bonpua died. He was a very specially man. He was my hero. I first heard Louie speak at the pre-event dinner in Santa Cruz in September 2000. This was when I was doing my first triathlon. I remember him talking about his desire to do the Ironman Event. He talked about his fear to take on such a goal, when he didn't do weither his health would allow him to complete this gruelling event. That was exactly how I felt when I decided to train for an olympic length triathlon. Well, Louie did train and complete the Ironman Canada. His spirit and determination to continue to enjoy life as he struggled with leukemia has made him a hero that I will always remember. I hope I can face the journey ahead with the same dignity, determination and spirit as Louie Bonpua. The news of his death as hit me very hard and brings the reality of my immortality very close.

While this news was devistating to me, I have also had a wonderful experience this week to share with you. At the North Bay Cycling Honoree Brunch this Sunday, I had a very special moment. Our honoree, Jessie gave me a gift that I will treasure always! She gave me a beautiful rock with the word "imagine" on it. She told me that her grandmother gave her this rock when she was going through treatment. It was given to her grandmother by a woman who had breast cancer. And it was given to this woman by someone else with cancer. I treasure the this gift and what it has meant to so many people. Hopefully, it will help me on my journey and in the future I can give it to someone else struggling with their own cancer journey.

The loss of Louie reminds me of the importance of continuing to raise money to fine the cure. It also reminds me of how important Team and Training and the Leukemian and Lymphoma Society are!

Please excuse the typos and also when I repeat a sentence or two. I realize that once I type a paragraph I can't get back to it to check or mistakes.

Thursday, January 24, 2002 at 14:33:31 (PST)

Well I finally got back on my bike today. I only went 14 miles on the Shoreline Bike Path. My average speed was 10.5 miles per hour. I can't tell you how much I enjoyed riding in the sunshine today. I am sure that I have never appreciated being on my bike as much as I did today. Even though I was still feeling some nausea, I really enjoyed this ride.

I did realize today, however, that there is no way that I will be ready to do the Half Moon Bay ride on Saturday. I wish you all well and that the rain holds up until after you finish. If it does rain and the ride is cancelled for both Saturday and Sunday, I know that I will be able to join you next Saturday.

My plan is to do small flat rides for a few days to attempt to get my strength and energy back before I attempt a longer ride with hills. I know that I will continue to train for the century in what ever way I am able. However, I am now thinking that a 1/2 century may be all that I am capable to doing this season. That would OK with me. I will just take one day at a time and see how things go.

At the present time it is difficult to think that in just two more weeks I will be starting the second five nights of chemo again. I know that I will feel at least as bad as I did last time. And it is more likely than not that I will feel even worse. I am working at finding a way to deal with this since I know that I have 4-5 more months of this treatment. The most important think on my mind right now is that this drug Leukeran works for me!

Tomorrow I will begin seeing my psychologist. I am hoping that she can assist me in finding that way to stay possitive and to find the best way to make this journey of treatment and ttraining.

Sunday, January 27, 2002 at 13:08:51 (PST)

It has now been 10 days since my last treatment and I am starting to feel back to normal. I am still sleeping a lot and feel tired at times. However, the nausea has gone and I am eating normally again. Now that I am feeling better, I am really aware of how poorly I was feeling.

Tomorrow I go for a blood test and then we leave for 4 days in Truckee. I am looking forward to living like a normal healthy person for the next two weeks. There has been quite a bit of snow and I can hardly wait to get out on the cross country trails. I can't believe how much I appreciate feeling good.

It will be interesting to see how much strength and endurance I lost over the past two weeks. Yesterday, I rode the trainer for one hour. I thought I was going to die. In a few minutes I will go for another ride on the Shoreline path. It will be wonderful cycling in this beautiful weather and feeling the wind on my face again. If all goes well, I will do the loop around Reno and Sparks on Tuesday. It ends with a good 4 mile climb. That will be the test for me to see how I am really felling and to see what kind of shape I really am in now.

I will write in the journal this week and give you all a weather update from Truckee!

Friday, February 01, 2002 at 16:12:35 (PST)

It has been several days since my last entry. I spent Monday through Friday morning in Truckee. It was extremely cold. Every night was sub zero and one night it went has low as -19 degrees. I had been looking forward to this time in the mountains and snow since I was finally feeling better after my first five nights of oral chemo.

On Tuesday I got a sinus infection that really hit me hard. I was very fatigued and spent most of the time on the sofa or in bed. I can't tell you how disappointed I was that I was ill. I really wanted to get out into the mountain air and do some walking, skiing and just having fun. I found myself getting very depressed because I know that I will need to start another round of chemo on February 11th.

It seems like Diane is spending all of her time taking care of me. And we haven't been able to do anything for enjoyment together. I guess I feel a little guilty.

I had planned to do a lot of physical activity to try and get back into cycling shape. That did not happen this week. I did ride the trainer for one hour on Wed. and Thurs. I have been trying to decide all day if I should attempt the Half Moon Bay ride tomorrow. I haven't riden on hills or done anything over 20 miles since the Cheese Factory Ride. I wonder if I should continue to train for the century or not. Well, I finally decided that I should continue to do what I can and as the time gets closer I will decide what is best for me. So, my decision is that I will go to Half Moon Bay and I will do what I can. If I need to I will have the sag wagon pick me up.

I will see you tomorrow. I continue to appreciate each one of you and the funds that you are raising.

Sunday, February 03, 2002 at 19:21:44 (PST)

I still can't believe that I completed the Half Moon Bay ride. Granted, I didn't do the last loop with the final hill. But I did ride 63.2 miles in 6:08 riding hours. During the entire ride I was tired and my legs felt very weak due to the past 3 weeks on the sofa. This surely shows what determination can do. I kept setting a small goal. First, was to get to the turnoff from the coast. Then I told myself that I would go to the 2nd sag stop. This meant I had to do the big hill at the flamingo house. When I got to the top, I decided that I may as well go down the hill. Then I decided to go to the 3rd sag. Well, that meant I had to do the next hill! This was at the 55 miles mark. Since I made it this far it was hard to stop even though I was as exausted as I have ever felt in my life. Diane said that she would ride the rest of the way with me. And yes, I made it to the Community Center in Half Moon Bay. Thank you to all of you who gave me support along the way, Merla, the sag volunteers, my riding group and all of my teammates who supported me as you pasted me by. I would like to also thank Steve and Mark for their special congratulations at the end of the ride.

I was so tired when I finished! I went home, showered, ate and I was asleep by 7:30. I didn't wake up until 7:30 on Sunday. I know that I needed to ride today to get the kinks out. However, my dad has not been well and I spent 6 hours at Kaiser in Redwood City. The entire time I was in waiting rooms with sick people! I became very paranoid because I am not suppose to be around people who are ill while I do my chemo treatments. My immune system is not as good during this time. It will be a miricle if I do not get another cold, flu, etc.

It is 7:30 and I still have not gotten on my trainer. I guess tomorrow will have to be good enough.
I feel like it is time to go to bed again.

Friday, February 08, 2002 at 18:56:29 (PST)

I just got my things together for tomorrows ride. However, I did it with little excitement. I have been feeling very tired the last few days. This makes me feel very depressed. I was able to do most of our workouts for this week. But, I am very concerned about completing the ride tomorrow.

I saw my psychologist today. We spent time talking about how difficult it has been to have three weeks this month that I didn't feel well. Then I had to deal with my father's illness. I'm not sure that I have told you before that I have not told him about my leukemia. He is 96 and living alone since my mother died and I have wanted to spare him the worry. Now, it is becoming a stress on me when he needs my help and I am not feeling strong enough to be there for him. My pssychologist feels that I should re-examin the ideal of telling him. I'm too tired now to do it. However, I promised that I would think about it soon.

Here it is Friday and on Monday morning I see my oncologist again and I assume that I will start the oral chemo again on Monday evening. I'm not sure that I am ready to start feeling poorly again so soon. All day I have been so emotional. It seems like I can cry over anything. Even e-mails from my team mates congratulating me on the HMB ride and telling me what an inspiration I am to them has sent me for the kleenex!

I will see you all tomorrow. This will be my last team ride before Solvang. I'm sure that I will not be up to doing the Livermore ride. Good night for now. It's still early, but I'm going to bed now. I am so tired, I know that I need as much sleep as possible. PLEASE GIVE ME ALL THE SUPPORT THAT YOU CAN TOMORROW. I WILL NEED IT!

Monday, February 11, 2002 at 17:05:45 (PST)

Here's the good and bad news. First, I completed the 69 mile ride on Saturday. I was tired beginning at the 25 mile mark. I just kept setting very small goals and finally I had completed the ride. Yes, I walked the "wall". That's OK. I am so pleased to have finished. I had a real hard time just getting ready to start the ride. I had been very fatigued for several days and I was experiencing depression. When I got to the ride I felt like staying to myself and I couldn't get my mind set to the fact that I could complete the ride, especially the hills! Thanks to Susie, Diane, and my other riding team mates I did finally get my "ass" into gear.

I got home, took a shower and dropped on the sofa. Sunday was no better. I couldn't get off the sofa I was so tired. Today I understand why I have been feeling so fatiegued. I went to my oncologist and I got the results from three blood tests since I started chemotherapy. The second good news, is that I am getting great result from the drug leukeran. My white blood cells have dropped from 279,000 to 29,000. The doctor feels very good about these results. The bad news is that my platelets are low and I am edemic. That is why I have been so tired lately. Because of this I will not be doing my second round of chemo until March 11. That means I will not do any more until after the Solvang ride. I hope my platelets increase so that I will not be so tired.

Do you know what this means? I will now be able to do the Livermore ride. I can't say that I am looking forward to the hills. But, this is great news for me.

And now for the really bad news. While I got great results from my doctor today, our sweet cat Olivia got her results which show that she has a very aggressive form of stomach lymphoma. We will attempt a protocol of injections that may bring her into remission. This means I have another name to add to my bracelet!

I plan to give myself some time to rest the next few days. Yes, I will continue to train, but I feel like some rest will do me as much good as anything. I can't tell you how good it is to know why I have been so fatigued. My mind just seems to run wild and I think it must be that the drugks are not working.

Congratulations to all who completed the ride on Saturday. I would like to especially, recognise Jessica who rode up the "wall" for me!

Tuesday, February 12, 2002 at 12:38:30 (PST)

I am so fatigued today. I slept until 9:30. That is really late for me. I forced myself to go the the grocery store. When I returned I felt like I could hardly get everything into the house. I had decided to take it easy today. However, I never expected to feel this tired. I had hoped to do an easy ride today since the weather is so great. But, I just couldn't get on the bike.

I do feel better mentally, just knowing why I am so tired. Maybe I am allowing myself to really let down. If is funny what one's mind can do when you are ill. Part of me has been questioning the validity of my fatigue. Was it all in my mind? Am I just being a whimp? Now that I know that I really have a reason to be tired, I think I am really feeling the fatigue.

Tonight I will go to my cancer support group. It will be great to meet with my cancer brother and sisters. I thought I would miss this month because of the chemo treatments. But, now that they are delayed I can go.

Well, I'm going to hit the sofa for the rest of the afternoon.

Sunday, February 17, 2002 at 08:17:11 (PST)

I am beginning to feel a little less fatigued. Friday Diane and I rode 45 miles. We began at Millbrae Ave, rode down Sawyer Camp Trail and down Canada Rd. to Woodside. We went down Whiskey Hill Road and farther. Then we returned. The ride up Sawyer Camp felt better than it has ever felt before. I was very tired when I finished and sore too. On Saturday we rode 21 miles from home down to the Great Highway, through Golden Gate Park and home again. At least we did 66 miles, even if it did take two days.

I am trying to eat well, take iron supplements, get plenty of rest and do some training. At this point, I almost feel that the rest is doing me as much good as the training. This week I hope to complete a 80 mile ride. Unfortunately, Diane and I will make the Livermore ride. She needs to be at a function in SF, dressed and showered by 6:00. The speed that I ride and the likelyhood of trafgfic driving back to SF would be too stressful. Therefore we will do our ride Thursday, Friday or Monday depending on the weather. We will ride from our house down Skyline, Canada Rd. and some loop in the Woodside area and then return home.

I continue to have my ups and downs emotionally. It seems to be the worst when I am fatigued. I have to work very hard at staying possitive, enjoying the moment and especially continuing to train. I really need to thank Diane for keeping me going. If I lived alone, I am sure that I would have given up the hope of completing the century ride in Solvang. Even today, I am not sure how I will feel each day. And the most important thing is how I will feel on March 9th. Each day I pray for energy, no rain and no wind. Do you think I am asking for too much?

Our cat, Olivia has begun her chemotherapy for Lymphoma. She seems to be handling the drugs quite well. She has an injection every week for 4 weeks and at the same time she is taking 3 pills every 3 weeks. Her first pills will be on the March 11th the same day that I will begin my second round of my own chemotherapy.

Keep up the good work with your training and again I thank you for your commitment to fundraising. It means more than ever to me now that I am undergoing treatment.
GO TEAM!

Thursday, February 21, 2002 at 19:54:30 (PST)

I have not been feeling too well. I have been very fatigued and I have had a sore throat and swollen glands in my neck. Yesterday, I spent the entire day in bed or on the sofa. I went to bed feeling possitive that I could not ride today. This was to be our "Livermore Ride".I woke up at 7:30 and decided that I wasn't going to feel any better tomorrow. Therefore, we decided to do our 80 mile ride.

We rode 76 miles. We rode from our house in SF down Skyline and Canada Road to Woodside. There, we went on Whiskey Hill and Sand Hill and actually ended up at the Cemetery in Palo Alto where Diane"s Mother, Father and Brother are located. Then we returned the same root. It took 7:10. I was pleased with my time. This ride does not have the long climbs that the Livermore ride has, but it also doesn't have the 30 miles that are basically flat.

I see my psychologist tomorrow. I am sure that I will spend some of the time talking about how depressed and fatigued that I have been. Also, I am beginning to worry about my low platlets and anemia. Will I be able to start my 2nd round on March 11.

I am getting ready to hit the sofa for the rest of the night. I will be sending good thoughts to all of you on Saturday. I will pray for little wind and good energy for everyone. I will see you on Sunday to celebrate our 80 mile rides.

Sunday, February 24, 2002 at 11:09:26 (PST)

I am very disappointed that I will not be able to attend the Solvang Send-off Party today. I have had a sore throat all week and on Friday I began running a 100.4 degree fever. I talked to my oncologist and he prescribed penicilin for the infection. It is now Sunday and I am without a fever this morning. However, the sore throat is still there. I know I must stay home for my own good.
I wanted to be able to congratulate everyone on completing the seasons team rides. What an accomplishment.

I have been wondering all weekend if I will be well enough to do the century ride. I know this is not the most important thing in the world. Certainly, just feeling good is at the top of my list. I never thought I would be able to do all the training. When I finished the 70 and 80 mile rides I was so pleased. I will have to just take each day one at a time and see where I am health wise on March 9th. Right now the idea of a 100 mile ride doesn't sound like something I am capable or even interested in doing. Hopefully, I will feel better in a few days and I will feel like getting back on my bike.

Regardless, I will be at Solvang. I will ride if I can and if not I will be there to cheer my TNT team on!

Monday, March 04, 2002 at 13:28:55 (PST)

Well, I'm finally home after 4 days in the hospital. I was so sick. I started with a sore throat, swollen glands and a fever. The doctor order antibiotics. However, as the week went on I just got worse. The fevers were higher, I had diarrea and then vomiting. It ended with a 103 degree fever and then I called the doctor again.

I knew that he was going to put me in the hospital by how bad I felt. But what really scarred me was he got on the phone while I was in the office to arrange a private room and said that this was "potentially life threatening". I had IV drip, antibiotic drip and injections to encourage my bone marrow to produce the good white blood cells that fight infection. The side effect is pain in my bones. I have been able to tolorate this pain with codine. A healthy person has 1400 to 6500 of these good white cells. I had only 100.

While I was in the hospital I began to feel better as my fever left. Then I was well enough to have a major anxiety attack when I though about my condition! I felt so scared alone in my room and I spent a good amount of time crying. Then that afternoon, Jessica arrived with my gift of a "jar of lover". What a perfect gift. As soon as she left I read each note. I can't tell you what it meant to me at that moment to know that you all are touched by my life and are caring and sending me good thoughts.

I will see the doctor on Wednesday. He will examin me and do a blood test to see if I am healthy enough to travel to Solvang. I would love to see each one of you. However, I will only go if he says I can and also if I feel strong enough to do it.

I never thought that I would be able to make it through the season while I was doing chemo. But I did complete all the long team rides. For me that makes a successful season! Now each one of you will have to do just a small part of your ride for me.

I will write again after I see the doctor.

GO TEAM!

Wednesday, March 06, 2002 at 17:04:57 (PST)

Unfortunately, I will not be going to Solvang. I would love to see you all and thank you for your commitment to the cause and especially the funds that you have raised. I can't even tell you what it means to me now that I am having a difficult time with CLL.

I am back on two antibiotics since I was running a fever again today. Also, I have begun the nutrpen injections this week. If I need to have them over the weekend I will learn to give myself the injections. At the present time, I have nutipenia. This means that my "good white blood cell count" is less than 1,000. (4500-6500 is normal) When I went in the hospital they were at 100. Now they have increased to 400.

I feel a little yucky when I get a fever. And I am feeling fatigued. My spirits are good and I am optomistic that the injections will continue to improve my count.

I will be thinking of all of you this weekend. Remember, when you are tired, and feeling like you are not sure that you can finish the ride, I AM AT HOME PULLING YOU UP THE HILLS AND THROUGH THE LAST MILES. Have a wonderful experience this weekend. It has been a pleasure training with you and I appreciate all the good thoughts that you send my way!
GO TEAM

Friday, April 05, 2002 at 08:39:07 (PST)

This is my first entry for many weeks. As you must know I was sick for several weeks and then my good white blood cells dropped. I had what is called neutropenia. When your good white blood cells drop below 500. (Normal is 6500) I had only 100 which meant that my immune system was not working at all. It was very scarry to say the least. This was the first time that I really felt like my life was being threaten.

I never realized how ill I was until I began to feel better. As I was going to the doctor's office ever day for neupogen injections I anxiously waited for my count to go up. Finally it went up to 3,ooo. A week later it had dropped to 2500. The doctor felt that I was stable enough to wait a month to see him again. I will go to him on 4/15. I am nervous about how these counts are holding and also, how much my regular white blood cell count has increased.

Since the neutropenia began the doctor stopped all chemo treatment. He wants my counts to stablize and for my body to have time to recouperate.The doctor is deciding what kind of chemo I will undergo next and also when I will begin this treatment. I continue to work at living in the moment. I attempt to enjoy the time that I am feeling somewhat better and to hope for good results from my next treatment whenever it begins.

I have been walking everyday. Diane and I spent 10 days in Truckee and I did a 40 minute loop that included a steep hill. The first two times that I did this walk I felt like I was going to die. Later it felt better. While we were in Truckee we adoped a 10 year hold cat named Sugar. We are presently getting a confortable in her two new homes and trying to introduce her to the dog.

Friday, April 12, 2002 at 09:08:02 (PDT)

Sunday is my 59th birthday. I have been celbrating since Wednesday. I had lunch with my dad as 4/10 was my Mother's birthday and we always celebrated our two birthdays together. Last night Diane and I went to dinner with Steve Kellerman and his wife Susan. Tonight we go to dinner with our friends and on Sunday we will have lunch with several more friends. It seemed like I needed to really celebrate this birthday after how ill I was earlier this year.

I hope to go for my first bike ride on Saturday. Maybe a short flat ride of 15-20 miles. I know I won't be ready for the alumni ride. However, I will be thinking of you all when I do my "baby" ride.

I am beginning to feel nervous about seeing the doctor on Monday. What will the blood test show? And what will he be thinking about furture treatments?

I will write more on Monday or Tuesday to keep you up to date.

Tuesday, April 16, 2002 at 07:49:59 (PDT)

I saw the doctor yesterday. I am recouperating well from the neutropenia. My counts are much better. However, my white cell count is continuing to rise. It was at 6,600 when I was in the hositol and now it is already up to 81,000. He has made a tentative decision that I will be given the chemo drug, fludanradine. He believes that I will begin in June or July at the latest. This is an IV drug that will be given for 5 days with the rest of the month off, for a total of 6 months. This also has side effect that can attack the immune system. He will give me some antibiotic drugs at the same time. One side effect is "shingles" and since I have had this two times in my lifetime he doesn't want to take any chances.

I have mixed feelings about this new. Part of me wants to just start now and get it over. And yet, it will be nice to have a month or two in which I am feeling pretty well. As usual, I am continuing to attempt to live in the moment and to enjoy each day. Right now I am sitting at my computer with my new cat "Sugar" sitting on my lap. I can see the blue skies and hear the birds and all seems well.

Today I will have lunch with my dad in San Carlos. He is so worried about me since I told him that I have leukemia. His communication skills are poor so all he can do is continue to ask me how I am feeling. At least I think he feels better when he actually sees me.

I hope the alumni ride went well on Saturday. I am still trying to get back on my bike. It is so hard after being ill and just resting for so long. Also, the fact that I will be starting chemo again in a month or two makes it especially hard to think about doing any training. Part of me is saying "why should I start to get in shape when I may not be able to coninue?" This way of thinking doesn't fit into my "live in the moment" objective. I think I need to just get on the bike and do it!

Thursday, April 18, 2002 at 18:42:37 (PDT)

Well I still haven't got on the bike yet. However, I did do an easy run for 23 minutes at Stern Grove.It felt awful. The only good thing is that I did it. I was slow and I felt like I was 100 years old. At least I can write it in my exercise log. Hopefully soon I will actually get on the bike and go for a ride.

I have decided to be an honoree for the summer program. Since I will be doing chemotherapy beginning June or July I'm not sure how much I will be able to do with the team. At this point I will be happy to just feel good enough to get out and ride easy once in a while.

Monday I am going to a symposium sponsored by the Leukemia and Lymphoma Society. A doctor from the Mayo Clinic will speak on B-Cell CLL. I am looking forward to hearing any updates in treatment and successes. Also, they will have a breakout group for patients. My doctor and I will discuss anything that I may learn before he makes the final decision on my treatment.

Sunday, April 21, 2002 at 07:44:20 (PDT)

I finally got back on the bike. I went for a short and easy ride of 16 miles. I felt awful. My legs felt weak. It was hard to breath deep. And I wondered why I was dooing the ride at all. But then I looked at the beautiful color of the flowers and I tried to just enjoy the view.

I am not sure how much of the fatigue was from not riding for 2 months and how much from the condition of my health. It scares me to feel so weak. I hope to just be able to get out and exercise a little every few days. I know it will be good for my mental health.At this moment it doesn't seem possible that I will be able to do any training with the team this summer. That makes me feel sad. I love being a participant on TNT teams and really getting to know the people who are willing to give of their time and energy to train, compete and especially to raise funds for research. I guess I will have to find a different way to do this.

Friday, April 26, 2002 at 08:07:49 (PDT)

I had lunch with Merla yesterday. While I was in the Leukemia and Lymphoma office I was able to visit with Barb, Allison and Erika (staff from the tri TNT). It was great seeing them and also have time to visit with Merla.

I am beginning to have symptoms that I had before I had treatment in January. It seems that when my white blood cell count increases the problem with my left big toe appears. It itches and hurts most of the time. It is getting close to the time where I will only be able to wear sandals. Also, I have been dizzy again. Every time I turn my head to the left it happens, especially when I am lying down. It makes me depressed to have these symptoms because they are a constant reminder that my white blood cell count is increasing.

I will see my psychologist today. This gives me a place to express my fears, feelings and also just a place to let down and cry. I usually feel better after my visit. I hope so! Wll, I better get ready to leave as I must drive to Mill Valley for this visit.

Tuesday, May 07, 2002 at 13:55:44 (PDT)

I continue to feel like I am treading water, waiting to get the news of when I will start the next round of chemo. I have been some what tired and find it hard to get out and do some exercise. I just returned from 10 days in Truckee. We saw snow, wind, rain and sun. It is always good for me to be in the mountain air. It makes me forget about the issues that I am dealing with here in SF.

I have purchased a portable CD player and some Singing Bowl Healing Sounds. It helps me relax. I plan to take it to my chemo treatments.

I am looking forward to the beginning of the summer TNT cycle season. I know that I will do some cycling and having a team and staff to support me on a regular basis will be good.

Tuesday, May 14, 2002 at 10:14:37 (PDT)

I visited my oncologist yesterday. My white blood cell count is continuing to rise. It went from 81,000 to 100,400 in a months time. My lymph nodes are not really much larger and because of these two things, the doctor feels that we can continue to watch me carefully. This means no chemotherapy, at least for this month. My blood test did show that I am anemic. That is why I have been feeling so fatigued lately.If this does not improve by my next visit in June, he will give me weekly injections to help the anemia. I will administer these injections at home.

The problem with my big toe continues to bother me. I saw the dermatologist again today. He has given me additional medication and an injection of kenallog. He is trying to find a "band aid" for this situation that is greatly aggrivated by an increase in my white blood cell count.

I have not done very much exercise. I have been spending a great deal of time reading and napping.

I will be going to Truckee on Thursday for about 10 days. I hope to enjoy the scenery and breath in some good mountain air.


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