Wednesday, October 29, 2008

New News

I haven't blogged lately because there is so much on my mind. I don't even know where to start. I just might have to do a few over the next few days to get it all out. But first, I know people are looking for an update. I met with my oncologist yesterday. He is looking into getting me into a clinical trial at Stanford. There are several at UCSF & Stanford, but almost all of them require a certain HLA blood type. I do not know what type it is, but of course mine is not the type they are looking for. So automatically I'm eliminated from a lot of clinical trials. Right now, for the advanced stages of melanoma (me) the only one in the area is the one at Stanford. The blood type is not the only criteria, so my dr is checking if I fit all of the criteria. He should be calling me by the end of the week to let me know if I'm a candidate.

I don't recall if I've posted it or not, but my appetite is back! YEAH! I'm eating normal portion sizes again. And my back pain is very minimal. I haven't taken any Tylenol since yesterday. I also slept really good last night, in my own bed! I must say, things are definitely looking up.

Thursday, October 23, 2008

Just When You Think It Can't Get Any Worse

Last night I got a call from Dr. Gailani down in Riverside. He already received a copy of my scans from Tuesday and they were not good. The treatments have not stopped the cancer from spreading. So I will not be going down there next week. I guess the plus is that I didn't do the absentee vote on time, so now I can go and vote on November 4! I was worried that I was going to be in the hospital, and that both Sab & I were going to miss out on voting. Our votes count.

The last few days I have noticed a drastic decrease in appetite. I went to lunch with my dad yesterday, yes I was able to go, and couldn't eat much. I had about 1/2 of my side salad, and about 4 bites of my sandwich. I couldn't force another bite down if I wanted to. Same with lunch today. Sab & I had sandwiches, and I had to force myself to eat 4 bites. I hope my appetite gets better soon. For about 2 weeks I've also noticed my lack of strength. I try to get out as much as I can, which isn't often, but it's still hard. My legs, arms, stomach and back feel like there is no muscle left in them. Sebastian might get me some small dumbbells just to help me rebuild my strength. I still have my gym membership, but I doubt that have 2 lbs there :)

Wednesday, October 22, 2008

Worse Than I Thought

Yesterday was a worse day than I thought it to be. It started out ok, and got worse as the hours went by. Tylenol was my best friend yesterday! As was my mom, who made sure I was as comfortable as I could be. The aches and pain carried into night, and I even slept in today. Yep, I didn't get up until about 9:30am. For me, that's sleeping in! I'm normally up around 7am.

Today my dad is coming by. He & his girlfriend Barbara are driving down for the day to visit me. I think we are gonna go have lunch. I think I'm up to it, but I'll have to see when they get here. You see, ever since doing my chemo treatments, I have the worst gag reflex when I brush my teeth, and especially my tongue. Just thinking of gagging makes me gag, it's that bad. So I have to have my mind totally on something else when I brush my teeth to keep me from dry heaving. I know you don't want to here that, but it's true. I also try not to brush my teeth after I eat, so I don't throw up. Well, today I guess I wasn't careful enough. I ate my cereal and less than an hour later I brush my teeth, and got to re-visit my cereal. It was awful. I don't know if it was because I was so sick yesterday and it's coming back, or if I just didn't concentrate that well today. Either way, I hope this doesn't happen again.

I would like to say thank you to Bill, Sebastian's dad. I got the nicest card and gift from him this weekend, it was totally unexpected. It seems as if there are always angels surrounding me. Every time I'm feeling down, sick or sore, there is always someone that lifts me back up. I could not have asked for a better family, or friends that are like family!

Tuesday, October 21, 2008

I've Lost Count

I went for my PET/CT scan this morning. I've done this so many times, I've lost count at how many this is. I'm praying the results are good and that I'll be back in Riverside for Halloween. I thought I would find out the results at the end of this week, but my appointment with my oncologist is next Tuesday. One whole week before I find out the results.

I've been getting out about every other day. It's weird. Some days are good, some are bad. I still haven't been able to fully recover and I never know what the day is gonna be like. I thought today would be a good day, and after my scan I got really sick and my body was aching. I got home and took some Tylenol, and my mom massaged my whole body. Every time she does that it relaxes me and helps the pain go away. What would I do without her?

Thursday, October 16, 2008

No New Updates

I haven't posted lately because I have no new updates. I go next week to get another PET scan, and probably won't find out the results until the end of the week. Of course I scheduled it for first thing in the morning, because I hate not being able to eat/drink all day. One time I think my appointment was at 2pm, and the appointment is close to two hours! I don't know how I made through that day without fainting. But I must say, I learned my lesson and get the earlier appointments now. Other than that, everything is going smooth. A few days ago I was having the worst back pain ever, that lasted a few days. But recently is has gone done. It is very minimal, and I sleep a bit better at night. Hopefully it's won't come back.

I try to get out once a day, but it's not always possible. Today, I'll actually get out 3 times - woo hoo! I just try not to over do it. I had to take Butter to the vet, because last week he had an ear infection. The appt was only 2 minutes! They just weighed him and then the dr checked his ear, and all is good. The infection is gone. I was surprised at how fast it went. Then I went to rent a few movies and grab lunch. I was too lazy to make anything, and my mom is not feeling well, so I didn't want to ask her to cook either. Then tonight I'll be going to ladies night w/Latinas y Amigas. I'm glad that I'm able to get out and hang with the ladies who do so much for me!

I want to say thanks to everyone who has sent me the nicest messages & emails. Thanks Austin for the poem. I totally got it and had tears in my eyes reading it. I know we don't see each other often, but that does not diminish our friendship or feelings for one another. You are like a brother to me.

I'm quite surprised that nobody has taken me up on my offer of stopping by or meeting up somewhere. The only person who has come by is Lori, and that's normal. She always comes by. I don't even have to ask her. I think that is why I appreciate her so much. She is busy with work and her daughter and the gym and church, etc, and she still comes by all the time and calls me all the time. And Sophia is coming by on Saturday, I can't wait to see her. I don't even remember the last time I saw her! Then there's Kathy. I barely met her, and she is always sending me the kindest, most encouraging emails and she has even offered to come meet up with me. I have just been bad and have not set up a time ~ Sorry Kathy! I will send you an email soon. I don't know what to think of it. I get a lot of emails from people with good intentions, but there is no follow through. Well if you don't intend on doing what you say, don't say it. I'd rather that. I'd rather get no e-mails than getting a lot of fluff. Actions speak louder than words.

Tuesday, October 7, 2008

Little By Little

I'm recovering little by little. This time home is much better than last time after the IL-2 treatment. I did not get any arthritis this time. I can't say enough how grateful I am about that. I don't go back to Riverside until 10/31. Yep, Halloween. At least I get time to recover this time around.

I've also been getting out of the house and visiting friends little by little. My first weekend home I went to a bbq at my bosses house. I thought I would be there for about 2 hours, I ended up sticking around for about 5 hours. It was nice to see my co-workers and just hang out and relax. I sat the whole time so I didn't overdo it. I can't wait until I'm well enough to go back to work. Don't get me wrong, I like staying home :) I just like that it keeps my mind busy and focused on other things. Plus the people are so nice and understanding.

During the week I just stayed home. I think I went to Safeway once. That was my only outing. For several days the furthest I went was my mailbox, which is on my porch. I have some energy, but not a whole lot. I do hate staying home, but I also have a hard time just getting out. I was glad when Linda1 invited my mom & I to Capitola. I had been there before, and knew that downtown was not too big of an area. So my mom & I joined Linda1, Carolyn, Chris & MaryAnn on a day trip to Capitola. It was the most perfect day, not hot or cold. And since the area is pretty small, I got some walking in, but wasn't too exhausted. When we stopped and looked at the shops, most of them had benches out front so I got to sit down and rest a lot, which I needed. Here's a pic of me (Linda2) and Linda1 resting on a bench:

After Capitola there was a birthday party for my angel Serenity, she turned 11. I really wanted to go, but I didn't feel up to driving across town & back. So I missed her party. I was so sad. That was the first party of hers that I missed. I'm sure she understood. But on Sunday I stopped by and spent a little time with her. I took her to get a pearl drink (our fave) and then a game for her Nintendo DS. After that, we called it a day. It wasn't much time that I spent with her, but it's quality over quantity, right? I love my conversations with her, its like being a kid again :)

I'm trying to make time to hang out with friends & family this month since I have a bit more energy than I have in a long time. My weekends are slowly filling up. Everybody has things going on during the weekends! I'm free all week, obviously. So if you have time during the week, call me or stop by my house. Once in a while I won't mind getting out too, I just can't get out everyday. This Thursday I'm actually getting out to have lunch with my co-workers. If you are free, let me know so we can make arrangements to meet up! I'm open to just about anything.

I'm so touched that so many people read this. Sometimes I don't realize how many people are actually interested. Then I get emails that I haven't updated in a while ~ yeah, I've been lagging! Then I get other emails at how moved people are by my story. At times I think it's just me and my immediate family that are affected, because I talk to them and see them daily. It's nice to know that there are others out there who care.

People think I am strong. I don't think I'm as strong as people think I am. I am selfish. Very selfish. I am grateful. Very grateful. What makes me both selfish & grateful at the same time? The fact that if anything happens to me, I will not be in as much pain as those I leave behind. I cannot imagine losing a parent, a daughter, a spouse, a sister or a friend. All of which I am. Just the thought is frightening to me. I hope I never have to experience anything that painful. And I hope those around me don't have to experience anything that painful. I'm here for the long haul.