Saturday, December 27, 2008

What a Nice Christmas

I had a nice quiet Christmas this year. Unfortunately Sebastian had to work, but Anna and Felicia had come over Christmas Eve, so on Christmas morning we all woke up to open presents! We all got really nice gifts. One of the highlights was Anna got Reanna the Wii, so early in the day she opened it and we played it. It was so fun, and harder than you'd think. I think it just takes some getting used to, plus I'm not that coordinated. By next week I'll be much better. After playing with the Wii, we just hung out and watched movies all day. When Sebastian got home he opened his gifts and not too long after Lori & Fred came over to visit for a while. Of course we brought the Wii out again and they played for a while too. I love that game, I don't know why we never got one sooner. It was getting late and both Lori & Sebastian had to go to work early the next day so we called it a night. It could not have been any better, I loved hanging out with family & friends.

The day after was not as good. I woke up at 8am and was nauseous as can be. Just a few minutes later I was throwing up. That continued all day long. I could not eat or drink anything. I took my nauseous medicine @ 5am, and it is supposed to last 8 hours, but obviously it did not work at all. So once again I could not take my pain medicine because it would not stay down. I was in pain all day long. My dad came over first thing in the morning, and I could not even see him for the first few hours after he got there. I was just in my bed resting. Around noon I was able to get out of bed and I went and laid down on the couch. I stayed there all day, just resting and sleeping. About 8pm the pain was unbearable, so I went back to my room. Sebastian gave me another nauseous medicine and I tried to take more pain meds. I still wasn't holding it down. Around 9:30 the pain was really bad, so I thought I'd try again. This time it stayed down. I was able to sleep through the night! Well, I do wake up every 4 hours to take more medicine. So far today I'm holding my medicine down, I think I'm gonna try and eat breakfast in a bit. Wish me luck, I'm hungry!!

Sunday, December 21, 2008

The Silent Treatment

Lately I've been having to give everyone the silent treatment. I really hate it. If I talk after I eat or take medicine (which I'm always doing one of) I can't seem to hold it down. I get frustrated because you don't realize how much you talk until you can't. So if you call and I can't talk, please understand why.

What you might be accustomed to is getting the silent treatment from my husband. Don't expect that to change. That is who he is. If you came over and he stayed in our room, that is normal. It's nothing against you. He does that to everyone. So if you come to visit me, and not him, don't be offended if he does not come out and chat with you.

Saturday, December 20, 2008

Christmas is Coming

Christmas is less than a week a way. For a long time it didn't even feel like Christmas to me. Every year I help Paige & Reanna set up the tree, and then let them decorate it. I also love to help them put out the rest of the decorations in the house, etc. Then of course I send out cards to friends and family and go shopping for gifts with Sebastian, while hinting what I want : ) Then there's the wrapping of the presents, and deciding whose house we are going to, or if we'll even be at home. A few times we have even gone to the parade in downtown San Jose, and standing out in the freezing cold at 7am is definitely a reminder that Christmas time is coming. And all of the different Christmas parties are just spectacular. This year is much different. I did not help at all with the decorations, Reanna and Paige did all of the decorating. Then Paige & Sebastian did all of the shopping. So if you did not get a gift, it's not my fault - or if you don't like yours, don't look at me! Ha ha.. I also did not send out any cards.... so please forgive me. But as the presents build up under the tree and the cards from friends and family keep coming in the mail, it is getting to be more real. It just feels so weird to not be a part of everything that's going on around me. I feel like a hermit in my home. I'm not even making plans to go anywhere, as Thanksgiving was not as easy as I would have liked. So my plans are to just be home.

As far as my trip to LA, it was good. Of course our flight out was cancelled, so we had to wait an extra hour in the airport for the next flight. No biggie. But on the flight there right as we took off I got nauseous. It was kinda nice because they gave me ginger ale right away. And once again when I landed, I was nauseous again. So they got me a wheelchair to take me over to area where you get a cab. I asked the lady who pushed me if we can do that when we come back to leave, and she told us what to do, so that was good. On the way home we got to skip the security line! Saved us a lot of time, but then of course we were just waiting because we had gotten there early. Oh well. Right when we landed we went to our hotel and rested. I wanted to go eat at the Promenade in Santa Monica because we were right there, but was upset because I was still too nauseous. So we got up with just enough time to go to grab a fast bite and head to the clinic. Of course we go to the clinic and it's the wrong one. They have two offices, and I had the address of the wrong one. And we took a cab so we would have to wait for another one. But the lady in HR was kind enough to give us a ride due to the confusion. We finally got there and met with Dr. Hamid. At first I was a bit skeptical of what he would say or recommend. I don't know what he said or did, but I just did not have a good feeling. But when he came back into the office he had 2 different clinical trials that he was giving me the option to do. He was so certain in what him and his partners are doing in melanoma clinical trials. And the thing is, if the two trials don't work out, there are always more options. I really feel like he is the doctor for me. Both of the trials contain chemo treatments, so I know what I'm getting myself into. This is not going to be easy. Plus I'll have to be going to LA & back weekly to get the treatments. It will be a grueling time. I just pray that my body is up to this. I pray I have the strength to go through this again. The treatments will be starting in 2 to 3 weeks, it just depends which one I choose to do.

I have stopped updating this site as often as I would like to. I would like up update it about every 2 to 3 days. The only thing that's stopping me is that I really have nothing exciting to share. I hate to come here and type all of the pain I'm in, how tired I am, how much I sleep or don't sleep. There is really nothing good for me to report. I feel like I'm getting worse and worse as the days go by. The melanoma causes little black bumps under my skin that rise to the surface. It is extremely visible on my left leg. Over the last 2+ weeks there are new bumps popping up everywhere. My legs, stomach, back, arms, neck everywhere. They start small, but get bigger, especially as they rise to the surface. So far they are not visible when I'm fully dressed, hopefully they'll stay that way. Anyway, I want to hear from you. If you want me to update the good, the bad, and the ugly, I will. I just really want people to come here and enjoy it. I hate to only have bad news, then worse news. I would hate it if you started dreading reading here. So let me know what you want to see here!!!

Tuesday, December 16, 2008

Going to Santa Monica

Today I'm heading out to Santa Monica. Sebastian & I will be going out there to check out the clinical trial. I'm hoping it's something that my body can handle. I'm not bringing my laptop so I will not update here until I get home, either tomorrow night or later if I can't do it tomorrow. I'll have my cell phone on me, so if you want to call me, you can definitely try!

Thursday, December 11, 2008

The Little Things

It's the little things that make me happy. There have been so many little things that people have done for me that don't go unnoticed.

On Thanksgiving my uncle Manuel and aunt Elisa drove over to my dad's house to visit me before they went on to celebrate their time with friends & family. It was nice to see them as I hadn't seen them since last summer and I don't know the next time that I'll be able to see them. And I am always getting lovely cards in the mail from them with well wishes. Matter of fact, I got a Christmas card from them today! It's the little things.

Every weekend my sister Anna comes by with food and new movies to watch. Lately I haven't bothered watching much movies, but it's nice that she brings them because I do get tired of TV. Yep, all I do is watch TV. I don't care if she has to work while she's here. Just her being here is nice. And she is so thoughtful. She knows what I like and she makes it happen. Right when I'm starting to get hungry, the food is already ready. She knows I hate to wait and always has it right there. She takes initiative and makes my life comfortable. I'm so spoiled by her, I hate when she leaves. I must say we have not always been the best of friends, what sisters are??? But when the the times are tough, she is right there. I could not have asked for more. Nor could I do better myself. I must say, she is a better sister to me than I am to her. I get a lot of emails saying what a good friend I am, but where I lack is my relationship with my sister. I wish there are things in the past I could have done different, but what's done is done. I love her with all my heart and always will.

My mom is here for me morning, noon and night. She keeps this house running while I'm down. She makes sure Reanna is taken care of, wakes up Paige in the morning and takes her to school & back, makes all of my meals plus dinner for everyone, does our shopping, house cleaning, and everything else you can think of. She is what keeps us afloat of our every day duties. I don't know what I'd do without her. It's the little things.

Today I got a call from my brother Raymond. I don't see him often as he's in Arizona, I only get to see him when he comes to the bay area. It's been a while so it was nice to see him last month over the holiday weekend. I was quite surprised today when he told me in our conversation how proud he was of how I raised Reanna. I hear that a lot (why wouldn't I? Just kidding....) but he really explained why. He told me that she was very good and respectful to her elders, parents, grandparents, etc and that lately he hasn't seen that out of kids her age in a long time. He said that I raised her just like my mom & dad raised us, and I must say his words could not be more kind than that. I don't know what it is in those words that made me so emotional, but I could not have been more touched. It's the little things like this that make me happy.

Friday, December 5, 2008

Good News

I finally got a call from the LA clinic today. I go there for my consult on Dec. 16th. I do not know what the treatment there will be there yet. I'll find out everything at the consult.

It's been one long week. I haven't blogged much because I really do try to put my all into my posts, and I haven't have the energy to do so. I've had a lot of company and I've been giving my all to them. It's difficult to give my all to my family and blog at the same time.

My mom left on the Wednesday before Thanksgiving, and I had no one here to help me. So my sister Anna and my dad really came through and stayed with me while Sebastian & Reanna worked. It really helps to have them here because there is so much that I have a hard time doing. They make my meals for me and help to keep track of all of the medications that I'm taking. They have to write it down for me because it's so easy to forget what I took when. Then when Anna had to go to work Sebastian took off two days of work to stay home with me. So now Anna's back here, and Sab is back at work. And then my mom is coming back tonight so no one will have to miss anymore work to be with me. That's a good thing!

I really haven't left my house in days. I wasn't feeling well on Thanksgiving, and had to go lie down and nap after a while. I was glad to wake when I did, because right after I woke was dinner time! YUMMY. My brother Ray made the dinner and it was really good. I was bummed because my appetite was so small that I couldn't eat much. I barely got to taste it all. Not too long after dinner it was time to head home. I was sad to say goodbye to my family and go home.

The next day Anna came over to take care of me, and then my brother stopped by for a few hours to visit before he headed home to Arizona. It was really nice to hang out with him for a while because I hadn't seen him in at least two years. Later that evening I felt a bump behind my ear that was starting to hurt. I asked Reanna to look at it if it was a pimple or something, and she said no, it was just a bump. The next morning my dad came over to help out. He even went out of his way and put a weather sealer on our new fence. Reanna also helped him out a bit.

That night the bump behind my ear got bigger and was hurting even more. Anna & my dad made me call the dr so I made an appt for Sunday. On Sunday I went to the dr and she was not sure exactly what it was but she thinks it was a cyst. So she gave me an antibiotic and it has been helping. The pain has gone away and it has really shrunk. The only problem is, I hate the antibiotic. Keflex. It is the worst medicine ever. When I was in Riverside they made me take it 4x a day. I hated it. I cried and cried and begged not to take it. I even asked if they had one that went through the IV. The nurse told me they didn't, all they had was the one they gave me. At least she told me I was not the only person to complain about it. She said a lot of people don't like it. Yeah, and I'm stuck taking it again. I must say, I haven't stopped crying about taking it either.

I wanted to go see my dr, but I knew he would be busy on Monday due to the long weekend. So I called first thing Tuesday morning and got an appt to see him. I showed him all of the bumps that were new and just brought up other issues I was concerned about. He really didn't have much to say other than what I'm experiencing is all normal. He did run more blood work and gave me more pain meds. He told me that everything was approved for the LA clinic and that I should be hearing from them soon (which I did hear from them today).

Thursday, November 27, 2008

Change of Plans

I was to go to my dad's house yesterday and stay the night. I just couldn't go and leave Reanna behind. So Sebastian and I stayed home and we are all going to my dad's today. We will be coming back tonight. Although she is 18 and a big girl now, I could not leave and have Thanksgiving without her. It just wouldn't be the same. I'm glad she is going to come with us.

Happy Thanksgiving!!!

Wednesday, November 26, 2008

Happy Thanksgiving

I have been feeling ok, but to be honest the last thing I want to do is be online. I come on for just a few minutes a day to check emails, etc but seriously I have been dreading it. It is just uncomfortable sitting here at my desk typing. I would use my laptop, but it is so slow. Anyway, I ordered a new laptop and it should be here soon. This way I can hopefully update more often, from anywhere in my house.

I have talked to Dr Kwong, and we are still waiting for authorizations from Kaiser, as well as some other stuff from the clinic in LA. I should hear something by Monday or Tuesday of next week.

I have had many visitors, and I thank everyone for stopping by. Roger, Tina & Nidelia came by and gave me some supplements that I have been using everyday. They really have helped with my energy level I have noticed. I'm not running marathons yet, but hopefully by New Years I will be. Then later that night Belinda and her aunt came over. Belinda gave me 2 shirts which I desperately needed. All my clothes are too big and shopping is not fun. The next day my Uncle Ralph came over with Chrissy, and also a surprise visit from my dad! I was so excited to see him. I didn't know he was coming. My mom was kind enough to make lunch for everyone! It was good. On Sunday Reyna stopped by and gave me a candle holder, with a pumpkin spice candle, my favorite for the holidays. And then Anna & Felicia came over with a WHOLE bag of new clothes for me! They went shopping and bought me tons of pants, shirts & tank tops. It was like Christmas. What did I do to deserve that? And then yesterday Rhonda came by and dropped of a ton of red velvet cupcakes. I haven't had time to try them yet, as my appetite is pretty small, but I'm sure they are delicious! And if you stopped by and I forgot to mention it, I'm sorry. Like I always say, I forgot. It happens. A lot.

For Thanksgiving Sebastian & I will be going to my dad's house. Reanna was supposed to join us, but she has tickets to the Sharks game tonight and can't go with us. So my poor baby will be home. I don't know what she is gonna do yet, but hopefully she'll go somewhere. I hate leaving her behind, but I know Anna & Fe are gonna come stay with her tonight, so at least I know she won't be alone.

My mom left home this morning. She won't be here all weekend, so unfortunately I won't be able to have any guests. It's just too much for me without anyone here helping me. So if you'd like to stop by, it will have to be after she returns, on December 2.

Thanks for all of your love and support, HAPPY THANKSGIVING.

Tuesday, November 18, 2008

Will I Ever Feel Well?

For the most part I have my good and bad days. But it seems that lately I've been having more bad days. I rarely leave my house and I'm still in pain. Just yesterday my left leg started hurting really bad. I've just been taking the usual, Tylenol, and it hasn't been enough. So I started taking the stronger medicine, Dilaudid, and it just helps a little. It makes me feel more drowsy and lessens the pain a little, but it doesn't completely go away. I am glad though that so far it does not make me feel nauseous.

Tomorrow is a week that I have not heard from Dr Kwong. I have some questions for him, so I'll be shooting him an email tomorrow. Any new news will be posted here.

Just like last year, it is very difficult to make any holiday plans. My dad has invited me over, but I hate the fact that it's so close to the day, and I still don't know if I can make it. Then if I can, I have to stay overnight because I cannot go to/from in one day, that's just too much for me. So I don't know if Reanna can come with us because of her work schedule. I really hate not knowing what's going on from day to day and leaving others hanging.

I'm so glad that people have started coming by the house. I must say that I cannot remember everyone, as my memory is really bad. But this weekend my sis Anna was here visiting with Felicia & Lenora, and then she came back with my Auntie Linda & Jade, and then again with Anthony! It has been really nice having her around. And they know the routine already. If they want something, get it themselves because I'm not getting it for them! As hospitable as I am... ha ha... it's too much for me to get everything. They have to do it themselves. And then today Ruby & Roxanna stopped by, and it was good to hang out with them too. I hung out with them last month, and got sick the next day. I hope that doesn't happen this time :) Luckily for them, my momma was here, so they didn't have to help themselves. She served them food & drinks, I love my momma! So if you wanna be served, instead of serving yourself, come when my mom is here.

I must say I do get a good amount of emails and messages. I try to respond to all of them, but it is rather difficult. I DO READ THEM ALL. Please be patient with me and keep contacting me. One day I will get back to you. And I also said this in an email to Frances today, and I'll post it here. If you call me, keep calling. Even if you leave a message, don't expect a call back. I rarely call anyone. It's not that I don't want to call anyone, but who do I call? I've got a big list and it's easier to get a hold of me by being persistent. Don't give up. I will answer one day.

Friday, November 14, 2008

Not Much New Info

I did get a call from Dr Kwong this week, but there really isn't much to tell. He re-iterated that I did not have the correct HLA type for the Stanford clinical trial. Then he gave me three other options. He said I can start a different chemo here at his location, which has a 10-20% response. Option #2 was to do a clinical trial in DC which is extremely toxic. Everyone knows how hard of a time I have with that. Or I can try another clinical trial in LA. I opted for the clinical trial in LA. I have no other details than that at this point. He has contacted them to get me in there, and I haven't heard anything back. Once again, as soon as I know, I'll post here.

I have been in fairly good condition since my last post. Just sore again. It's not that bad, I'm just taking Tylenol for now. But I'm staying home and not doing too much. I did go shopping this week, on Tuesday matter of fact. All of my clothes are falling off of me. At first I just thought they were loose. Then when I went to see the dr 2 weeks ago, I was down 30 lbs. Yep, I was shocked too. I have been eating normal again, so I don't know why there is such a dramatic weight loss. But I'm not complaining, I haven't been this skinny in about 14 years. But my mom has been here cooking healthier meals, so that could be one reason. Well, I know another reason is that I have no muscle left in my body. I don't recall if I've posted this before, but all of the laying in the hospital bed, resting at home, etc I've really lost most of my muscle. To get up and turn over is hard and exhausting. You don't realize how much muscle you have until it's all gone. Anyway, I was happy to buy some pants that fit good. All of my pants & shirts are too big. Well, except for my new ones! I can't wait to wear them. I didn't buy too much, because my weight is always up & down, so I'm not gonna spend a fortune on a new wardrobe, yet :)

The only problem with shopping is that I was so tired the next day. I have learned that I can only do max one thing a day, and only 2 - 3x a week. If I overdo it, I really pay for it. I have had a lot of friends want to get together, and to be honest, it's quite hard. Harder than I thought. If you all don't mind, I don't mind you coming to my house. That is better for me. Even that is not easy, but I will make do! I do lay down most of the day, it's more comfy than sitting. But if you want to come by, I'll sit up for a while. I always do when Lori or my sister Anna comes over. Both of them have really helped me a lot emotionally through this. They are always both here for me when I need them. One of the things I worry about most is my immediate family, and they both always reassure me that everything will be all right.

On that note, Reanna passed her driving test yesterday. She is now a licensed driver! Drivers beware!!!! I added her to our insurance today, and of course she's already out. She just drove herself to get her nails done. She already made a wrong turn, but that comes with the territory. She'll learn the roads soon enough.

Today I went out and got a massage. I really needed it. I did a lot this week (my standards, not yours) and was feeling really beat down. I went to pizza with my hubby, the Applebaums, my sis Anna & Anthony on Monday night, then on Tuesday I went to lunch and shopping with Sebastian, then yesterday I went to lunch with my mom, Reanna & Paige. Last night my whole body was really sore, and I was really feeling it. So I picked up the phone and scheduled a massage for today. It was so good. I don't know why I don't do that more often. I think I'm gonna make a habit out of going there from now on. Don't know what to get me for Christmas? InSpa gift certificate will do... any amount... ha ha...

Thursday, November 6, 2008

No Clinical Trial at Stanford

Sally at Dr Kwong's office called me this morning. My HLA type is not in the criteria for the Stanford clinical trial. So I was not accepted. As far as the next step - Dr Kwong has had his staff send over all of my records to the Stanford oncologists. They are going to review and will hopefully take me as their patient. I do not know when I find out the results to that, but as soon as I know, you'll know!

Wednesday, November 5, 2008

I Remember When....

Challenger: My 8th grade history teacher, Ms. Taylor, kept the TV on the Challenger space shuttle all day. We had to watch it over & over. She told us it was going to be a big part of history.

Earthquake: I was working in the mall when the Loma Prieta hit. The walls were shaking, things were falling off the shelves and people were running everywhere. Minutes later the mall closed and it took almost 2 hours to drive 2 miles home. Everyone was safe. This was the biggest earthquake since 1906.

9/11: The radio woke me up to the news that the Twin Towers had been hit by airplanes. I immediately woke up Reanna and told her she had to watch it with me because it was going to be a part of history. We, along with the rest of the country, horrifically watched as the Twin Towers collapsed. America would never be the same.

Election 2008: I was so excited to go vote with my just-registered 18 year old daughter. No matter who won the election, history would be made. Around 7:30 pm we turned the news on so we could watch the progress of the election. At 8pm, they announced the west coast polls were closed. At 8:01 across the screen was a banner that read "OBAMA ELECTED" We were all bursting out of our skin in excitement. We watched both of the candidates speeches, and were truly proud of the outcome. I am truly proud to be an American, and a minority.

Tuesday, November 4, 2008

I Voted

Did you vote? I hope you did. This morning I got up and got ready. At 10am, Sebastian, Reanna & I went to the polls and voted. Words can not explain how glad I was to see my young 18 year old daughter voting for the first time. I'm so happy to share the experience with her. I know I'm raising a young lady who believes her voice can make a difference.

The good thing is, there were NO LINES! We walked right in, signed in the log and got our voting sheets. We took a few minutes to fill them out and were out of there. After that, we went to Starbucks and got our free cup of coffee!


Monday, November 3, 2008

A Little Late

I'm a little late in my posting. I dressed up for Halloween, and wanted to do a Halloween blog. But that didn't happen. I had some back pain most of the day, and as the night came it got worse. I was home alone handing out candy, and at the time my adrenaline kicked in and the pain subsided. Once the rain started and the trick - or - treaters dwindled away, the pain came back worse than ever. I called the advice nurse to get a prescription from my doctor, but they wouldn't do that. So my mom & Reanna rushed me to to the emergency room. I was in so much pain, and the wait was awful. I was in pain, sweaty, clammy and everything else you could think of and they were making me wait. Finally they called me in, and right after they did, I vomited. I was so glad I didn't do that in the waiting room. My sweatiness & clamminess went away, but the pain did not. The dr came to visit me and gave me some nausea medicine and then morphine. After that, they did a few x-rays, and of course there was nothing they could see. The dr came back again, and since the pain was not gone, he gave me a bit more morphine. Right in the middle of the dosage, I vomited again. I guess I needed more nausea medicine?

They prescribed me more pain pills, dilaudid, which is stronger than morphine. I took those upon arriving home. I took them for about 24 hours then went back to tylenol. The only thing is the nausea has barely gotten better. Today was the first time I ate something solid since Friday. And all weekend I could barely hold fluids down. I can't wait to eat regular food again. I would post my Halloween pic, but I'm lucky I'm even doing this right now. Maybe later I'll do that, and then a pic of my mom on Saturday as it was her birthday! I felt so bad because I was so sick. Sebastian picked up a cake & flowers for her on his way home from work. He is the best.

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.

Thursday, September 25, 2008

There's No Place Like Home

I was so happy to arrive home yesterday. We got to the house right at 5pm. I know this because there was a lovely bouquet on my front porch. I was quite surprised and had no clue who it would be from, and it ended up being from my work. Wishing me a Happy Birthday. I was bummed, because I knew at 5pm everyone would be heading home and it was too late to call and thank them. But I called this morning - so that was good.

We got to Riverside Thursday evening, and it was an ok ride. I rode in the back most of the ride and layed down because of the pain. Luckily it was tolerable. First thing Friday morning we got up and did my lab work.

I feel like a platinum member down at Riverside too now. I know all of Dr Gailani's assistant's now, the crew who always insert my central line know me by name, as do the nurses. Everywhere I go it's like running into old friends. And they treat me so nice.

Sebastian knows I hate stuffed animals. But on my birthday he came in the door and brought me a stuffed dog that looks just like my dog Butter. It made me so home sick. I looked at the dog and couldn't help but fall in love. You see, Butter is my side kick. He has his own bed in our room, but every night at bedtime he comes and lies on my side of the bed right in front of my nightstand. He stays there all night, or sometimes he'll go inside my closet and sleep under my hanging clothes. But he never goes far.

Also on my birthday I had a visitor. My mom and her husband drove from Las Vegas to visit me. Once again, I do remember them visiting, but not much more than that.

This time around I got thru 8 treatments. The problem is my heart rate and blood pressure get too high, and they have to be able to control that in order to continue my treatment. A few times I got out of bed to use the restroom, and my blood pressure would skyrocket. So for two days they banned me from getting out of bed. That was not fun. Luckily it did not last long. Then the doctor told them to hold one treatment, which they did. Two hours before I was to resume treatments again, Dr Gailani stopped them and said that was it for this time. Eight is good, and he didn't want to over do it.

Thursday, September 18, 2008

On The Road Again

Sebastian & I are leaving again today to Riverside. I hope that I'm up to it. The ride is not that bad, but I'm afraid of the pain I'm going to be in.

I finally called Robin, Dr Gailani's assistant. I told her that I was in a ton of pain, and asked if this was normal. She said yes, that arthritis is a common side effect of the IL-2. Why do I never know these things ahead of time? Anyway, ten minutes later Sebastian was at the store buying me Tylenol Arthritis, because that is about all I can take (according to Robin). It helps, but just for a few hours.

My best friend Lori will be here watching the house with Reanna. Reanna is not coming with us this time, she has to go to work. I hope that they don't have any incidences like last time I left her. Lori, Reanna & Breanna (Lori's daughter) went to Valley Fair Mall. As they were pulling up, a guy was running out of the mall with a stack full of jeans in his arms. Lori goes "He's stealing!" and says "Come on" and they start following them in the car. She makes Reanna call 911 and give the license plate number, and Reanna & Breanna are scared! Reanna was saying "Lori, what if they shoot us!" And Lori was saying "They won't shoot" etc and kept following. Anyway, I think they finally lost the guys and went back to the mall. Well, the stack of jeans were not cheap. The jeans are about $250 each. Yep. Jeans.

We are still eating the food from Latinas y Amigas. And it's not just us anymore. A few days ago my dad & I had tamales for lunch. There was one left the next day, so Sebastian put it in Paige's lunch. Later that day, everyone was off resting, and Sebastian comes down the hallway asking if I saw the mess and left it? No, if I saw a mess I would have called someone to clean it. What mess??? Paige's backpack was about 4 feet from where she left it, and there was a plastic baggie and shredded corn husk in the hallway. Yep. Peanut ate the tamale. The whole thing. Here he is, returning to the scene of the crime.

Last night Reanna got a cake for my birthday. That was so nice of her! She also got me a gift card to InSpa, where I love to get pedicures & massages. Last week when the arthritis started, I told Sebastian I wanted to get a massage this week before we go back to Riverside. Well, I haven't been up to it, it's been that bad. But now when I get home, I have a gift card to go. Reanna didn't even know I had told Sebastian that. She is the greatest!

Time to go ~ hope you all have a good weekend and I'll be back probably late next week. L~

Monday, September 15, 2008

What A Weekend

I think this has been the most horrific weekend by far. I have been in so much pain. I do not know if it's the drugs going through my body fighting the cancer, or if it's the cancer. Whatever it is, it goes down to my bones. I hope this pain goes away soon. Today is a bit better, especially if I'm online!

I forget so much lately. Sometimes I even go through and re-read my blog, and I read stuff like it's the first time. I have no recollection of what I have written. I guess that's a good thing I keep this then.

I do remember that Louise came to visit me in the hospital last time I was there, and I didn't see that in any posts. But much more than that, I don't recall. I'm sorry Louise, I wish I remembered more.

Thanks to Latinas y Amigas for the wonderful food again. We have already enjoyed the muffins from Natalie, Lucy's Famous Angel Hair Spaghetti and MaryAnn's Superb Pork Chops served with Potatoes & Bacon. We will be enjoying the rest soon. It really helps to have a home cooked meal after being away for so long. Hospital food ~ need I say more, and Taco Bell don't cut it after you've been in the hospital for so long. Oh yeah, another story I forgot to tell. The day I was discharged I ate breakfast, and it was ok. Then the lunch, no thanks. So I was just eating a few orange bites from the lunch tray. They didn't settle very well, and so up comes my oranges and breakfast. We are trying to get released asap to get driving home, but the dr was on lunch, etc and so we had to wait until like 2pm before we were finally discharged. I was so hungry, and as we left the hospital I asked Sebastian if I could get Taco Bell. Well, you have to know Sebastian to understand him. He was upset because we were going to get stuck in LA traffic. So I just complained a little that I had nothing in my stomach and that I didn't want to wait 3+ hours to get food. So of course he takes me and we get on the road. About 20 minutes in, I felt nauseous. I didn't want to throw up, as he would get upset (like I said, you have to know him). But it just was not the right thing to eat at the time. Luckily I didn't throw up, but I haven't wanted or craved Taco Bell since that day. I have been wanting home cooked meals, and thanks to you wonderful ladies, I have had them.

This weekend will be my birthday. I guess since Reanna's 18th birthday was in between treatments and we didn't do much, and Sebastians birthday fell on the day we were driving down, it's only fair that my birthday gets sacrificed too. Only I will be in the hospital, and be allowed no phone calls. I do remember they do not allow cell phones! And please, please, please do not disturb the ICU staff by calling. They are busy tending to me and other patients.

Thursday, September 11, 2008

I'm Home, But Not For Long

I got released from the hospital yesterday, and got home last night. I'm so glad to be home. The week went by so fast, but it's so weird because I had no outside communication. This time I was admitted to ICU starting day 1, and they allow no cell phones in your room. And if you get a phone call, they bring a phone to you to use very briefly. I think I got a message from a nurse that my sister called but I was sleeping. I don't know which sister it is, but I'm sorry I missed your call. I was in ICU because of the side effects. The whole time I was there they had me hooked up to a heart machine, checked my blood pressure every 13 minutes, and were always checking my oxygen levels. While still giving me IV's, infusions, pills, and every else. I had so may wires, plugs, etc if I yawned, they knew about it.

Starting out, they try and get 14 doses of the IL-2. They told me not to worry if I can't to all 14, most people only get 7 - 9 their first time. When all was said and done, I got 10 doses in. Once again, above average :)

The whole time I was there, Reanna stayed in my room with me. Poor thing, she probably got no sleep and what little she did was on this tiny seat that makes into a bed. Luckily, she is small. I would wake her during the night and make her push the nurse button. Between the nurses bugging me, and me bugging them, I don't think she slept. Now that I think about it, I don't think she was there to sleep.

Another good thing about being home ~ no more pill popping. I feel like all day & night I was popping pills. Just to look at them make me want to throw up now. There were a few times in the hospital when I actually did. Then the nurses would look through it to see which ones I was gonna have to take again. Glad that's not my job.

My recovery is not that bad. I don't have much nausea. But my whole body gets really sore. I'm extremely bloated, which they say should last more than a few days. The soreness comes and goes, and Tylenol helps it to go....

I go back next week. I can't believe it's so fast. But yep, next Friday I get to start this all over again. Why did I even leave Riverside this time?

Thursday, September 4, 2008

Happy Birthday Sebastian

Today is my husbands birthday! Since we are leaving for Riverside in just a few hours, we had a pie for him last night. Nothing fancy, it was just me, him and the girls.

Today I've been cleaning a little, so my house isn't too dirty for Lori when she comes and watches it for us. And packing a little too. I've got to go finish that up soon.

I also want to wish a Happy Birthday to Lucy! I wish I could join you beautiful ladies tonight, but unfortunately I can't. I'm glad I was able to make it last week, I had a great time. I'll be back soon ladies, save a seat at the table for me.

I'll be offline for a week, but Reanna might come and do a few posts for me if she has time. Have a great weekend. L~

Wednesday, September 3, 2008

I Love Kiehl's

I know all I ever do is say thank you, but there are so many people out there who have helped me lately I can't say it enough.

Anyway, last week when I took Reanna to the mall to get her new Ed Hardy sweatshirt, I stopped by Kiehl's because I needed a new toner. I have been using their Avocado Eye Cream for YEARS, and will not use anything else. And I dabble in the rest of their products when I can, like the Silk Goom cream, when I have hair. It makes my hair look so shiny. The Sales Assitant, Zan, was sooo nice to me. I told her my skin was extremely dry due to chemo, and she helped me get a good toner and then the Creme de Corps lotion w/spf 30. OMG, it's so smooth & silky ~ and it smells good! I love it. I don't know if I can use anything else now. I must say Zan went above and beyond. She was so kind and caring, and geniunely interested in me. Before I left, she went to the back and gave me tons of samples for my newly extra dry skin. I gave her this website before I left, so she can read my story anytime. Well, that night she sent an email that she loved the site, and that she wanted to give me some scalp oil because with chemo comes dry scalp. Right when I read that email, I realized how dry my scalp was. Sometimes it takes someone else to point out your issues! So I sent her my address, and in today's mail came a box with a full size bottle of oil for my dry scalp and two lotions! I can't wait to use the oil on my scalp tonight. Every day it seems to itch more and more. Thanks to the team at Kiehls, Valley Fair ~ Camie, Kathy, Sha & Zan. I will definitely be going there more often! You ladies are the best.

While I'm at it, thanks to Selina & Marissa for cleaning my bathroom for me. If you know me, I'm a product junkie. I try everything. Then I get something new. I have so many products in my bathroom, it has taken over my whole tub. I couldn't even get into my bath. Selina & Marissa came over and got rid of everything that I no longer use, and cleaned my tub & tile area. I can now take a bath, in peace. And Sebastian doesn't get as mad because not as many things are falling when he's using his stuff! Thanks, I owe you too one.

My sister Maria came over and helped me out after my mom left. She was kind enough to even plant a tree in my backyard and got me a new hanging plant that we put in front of our house. Sebastian likes it because he stuck it where we had a longer plant, and you can now see our new mailbox. I think it's a guy thing.

Anna, Felicia & Jasmine helped me a ton with the BBQ. Thanks for helping me set up and clean up, I couldn't do it without the 3 of you. Oh yeah, Lenora too. I look at the picture she drew me before my first chemo visit every day. It's still on my fridge. I owe her some toys. Remind me before she comes next time, because I'm gonna forget!

Tuesday, September 2, 2008

Thanks To All

Thanks to everyone who came to our BBQ. I enjoyed it, just wish I had more time to hang out with those of you that I didn't get a chance to. And I'm sorry for those of you that couldn't make it, hopefully we'll see each other soon.

I tried to take pictures of everyone, but I missed a lot of people :( It was a fun day, but very tiring. I'm still sore from Sunday. I feel like I had a good workout!

Friday, August 29, 2008

Thanks Uncle Manuel

I was really feeling down and then my doorbell rang. I got mad, thinking who is it? My dogs were barking like crazy and I didn't' feel like answering, but I did to shut them up. I saw a man running to his van. I thought, cool, they scared him off. I was reading his van and was checking out what he was selling. Flowers? They don't usually solicit. Did I get flowers? I looked down at the ground, and saw flowers! I immediately opened the door and thought ~ wow, who would do this? Right when I'm feeling so sad. The guy said "I'm afraid of dogs!" and I said, "that's ok." But in my mind I was thinking "that's what they're here for, to send people away!" LOL... Anyway, I just wanted to say thank you to my Uncle Manuel & family. You brightened my day more than words can say. You truly are the best. I'm sad you can't make it this weekend, but your flowers will be out for everyone to enjoy. The weird thing is, I just opened a chinese fortune cookie, and it reads: A present, over which you will shed tears of joy.
On a lighter note, I also just got a call from Robin, Dr. Gailani's assistant. I am still going to Riverside next week. As I said earlier, I'll be doing IL-2, 14 doses. I will get a dose every 8 hours. My treatment in the hospital will be a lot harder than the chemo, but going home will be much easier. She said most people leave the hospital and head to Del Taco. Me, I'll go to Taco Bell, I like them better. I'm sooo glad I didn't have to wait the whole weekend to find this out. I feel like a weight has been lifted from my shoulders.
Poor Sebastian. He'll have to work on his birthday (Sept 4th) then get off and drive down to Riverside right after. No party, no dinner out. I'm sorry he has to spend his birthday & birthday weekend driving me down and visiting me in the hospital. If you are coming to our BBQ this weekend, please just wish him a Happy Birthday. Thanks everyone, and have a good & safe holiday weekend~

PET Scan Results

I had my PET/CT scans on Wednesday, and went to see Dr Kwong today to find out the results. They were not good. There are more cancer spots on my liver, and there is even a little on my clavicle. I read a little bit of the notes, and I saw it even mentioned something weird in my left leg, which I already knew. At night time I get sharp pains in my leg, and once in a while I'll get it in the day too. In my left groin area, there was a huge amount lit (it lights up where the cancer is) so it has even spread there. I'm not sure if I'm going to Riverside now. I've called Dr Gailani and even paged his assistant, but have not heard back yet. I hope I hear back today. I would be totally devastated to have to wait for the 3 day weekend to be over for results. If I do go back, it will be a different treatment. No more chemo. Just high dose IL-2. I asked if I would be covered if I sought treatment elsewhere, and he said only if I could find somewhere where the results were proven. If I do any clinical trials, I won't be covered by Kaiser. He also said he will look into it for me. He is going to check a facility in NY, I forget what it's called, but it's the best in the country. I'm also going to do my own research myself. I won't give up, I will be my own advocate if I have to.

Monday, August 25, 2008

You Are Invited

Yes ~ YOU! This Sunday Sebastian & I will be having a BBQ at our house at 12:30pm. You are invited to come and spend the afternoon with us. Stop by and eat and just hang out. Call, email, or comment here if you are coming so we know how many to plan for. We'll see you on Sunday!

Thursday, August 21, 2008

Do Not Do List

During my first visit to Riverside, Dr. Gailani gave me a list of things that I can not do. Some I just didn't understand.

Do Not Shave: I am not to shave any part of my body. My immune system is way down, and my skin is very thin. Any scratches or nicks could take a long time to heal.

Do Not Itch: Same as above. My skin is too thin, and can't heal very well if I scratch hard enough to break the skin. The thing is, when you don't shave your legs, they itch! No amount of Benadryl helps to solve that problem. I'm still having issues with this. Oh yeah - I also rub my legs hoping the hair will fall out, but so far it just falls out of my head. Why not my legs?

Do Not Have Sex: A little personal, don't you think? Actually, Dr. Gailani had his assistant tell me that, and I was almost comatose, so I don't remember the reason why. Some rules were meant to be broken, right?

Do Not Be Around Sick People: Yep, also my immune system. If I get sick, and don't get better fast, it's possible they won't let me go back and do my treatments.

Do Not Floss Teeth: My gums could bleed, and not stop. Best to not even try it.

Use A Soft Toothbrush: As a hard one could also make my gums bleed. Well, the only soft ones I could find are the toothbrushes for 2 - 5 year olds. I have Dora the Explorer.

Wednesday, August 20, 2008

Brain Scan OK

My brain scan last week was o.k. Everything was fine. My dr was just being cautious.

Unfortunately my sister went home yesterday, I was sad to see her leave. I'm so bummed because I cannot find the battery charger for my camera. So I took no pictures :( I'll have to take tons when I go out to visit her now!

Right when I think I'm good, I'm not. I've been feeling really well this past weekend, and did just a little bit each day. Well yesterday I got knocked back down again. It was bad. I'm barely recovering from that. I don't know how come it happens? I wanted to see a few people this week, but I'm gonna pass because I need to get better. Hopefully next week I'll be able to see one or two friends I've been wanting to hang out with.

Friday, August 15, 2008

I'm Such a Sop!

So when my sister Maria finally arrived at my house, we both started crying uncontrollably. It makes me think of how true the phrase "Absence makes the heart grow fonder." Neighbors must've thought someone died the way we clung onto each other and hugged and cried. It has been really great hanging out with her, and to top it off my dad came down to visit also.

Last night, the Latinas Y Amigas stopped by and dropped off tons of food for my family & I. Right on time too. I was just scouring the fridge for dinner. The spaghetti hit the spot. Thanks to whoever made that. Yum Yum. I'm sure the rest of the food will be just as good in the days to come.

I also got a beautiful email from Amy this morning. Her words always bring me to tears. I truly have been blessed with good friends.

On a medical note: I have a do another PET scan (platinum club here I come) and CT before I can go back to Dr. Gailani's office. Plus my white blood cells are down, which are expected, so I have to go do more blood work today. I have also been extremely restless and my speech is really slurred. So I stopped some of my nausea medicine, and Dr. Kwong had me stop it all. It has been 24 hours, and it's still a little slurred. So now I'm going to get a brain scan, just be on the safe side. Luckily my nausea is good.

Thursday, August 14, 2008

My Sister's Here!

My sister Maria is on her way here, Lori just picked her up @ the airport. I can't wait to see her! I'm exuberant with excitement. I haven't seen her in about 3 years. I can't wait to hug her.

Thanks Amy K.

I just wanted to say thank you to Amy for all of your support. I got home from the hospital on Sunday, and Monday I saw there was a card from you (and others, thanks all) and I was too tired to open it. On Tuesday I mustered enough energy to open the card (doesn't sound that hard, but it really was) and it took me a minute to see what it was. It was the most beautiful card ever. I just started crying right there at the table. I could not control myself. You can see the scan below (just the cover). I can't tell you how much that card meant to me. Thanks Amy, you are truly a wonderful friend. Words cannot express my gratitude for you, even though you yourself have your own circumstances to deal with. Sometimes I wonder how I lucked into the best set of friends, family. Thanks to all for supporting my family & I during this time.

Wednesday, August 13, 2008

Missing Momma

This time when I got home from Riverside, my mom was here to help me out. She helped with meals, making sure I had my medicine, and everything else in between. There's nothing like a mother's touch. And how soft and gentle she is. Every time she touched me, or stroked my hair (yeah, I still have a little left) I could feel her gentle touch. Funny, no matter how old you are, you still love the stroke of your mom's hands. She helped and made sure I always had fresh water and clean underwear. That's a mom for you! She has started her journey home, and I can't wait for her to come back and help out again.

My Baby's Growing Up

So today is Reanna's 18th Birthday. How excited I am for her. She is really becoming more independent and it is a pleasure to see. She even went and got a piercing today. Check her out! I still could not do something that brave. Hard to believe that she is an adult. I want to watch and protect her for life. I just wish that her birthday could have been grander, like with a party or something. I'm still sluggish, and my words are still slurred, that we couldn't even sing Happy Birthday to her. I know she knows that we would if we could. I'm just so proud of her! I LOVE YOU REANNA. HAPPY 18th BIRTHDAY.

Monday, August 11, 2008

I'm Home

I'm home from my second stint in Riverside. Right now I'm just too tired to post, too tired to talk, and too tired to walk. I'll post when I have more energy.

Sunday, August 3, 2008

I Did It

This morning Sebastian, Reanna & I went to Mimi's for breakfast, my fave. After breakfast we went to the mall to look for a wig store. We couldn't find it, and were running out of time so we stopped looking. We dropped off Reanna @ the airport so she can go come home. She has to go back to work, so she can't stay until next weekend. I'm going to miss her.

After we dropped her off, I went back to our room so that I can look online for a wig store in the area. I found one, and after calling found out it was closed on Sundays. So I found another place, and called. Denise, the owner, answered the phone. She said that she too was closed, and that she doesn't sell wigs anymore because she downsized her shop. So I got off the phone with her and started searching again. Then I thought to call her back and ask her since my internet connection here is soooo sloooow. She just mentioned the first place I tried. Then she said she lives nearby, and that she has a few left at home and she'd bring them by if I wanted to go meet her at her shop. Of course I wanted to see them. So we went and met her, and the first time I tried them on, they were just o.k. My hair was too fluffy underneath and it was hard to see what they would look like without all of the fluffiness. She asked if I was going to cut it or shave it, and I told her maybe when I go home. She offered to cut it down a bit so it would not get so tangled. She said that if I wanted to see her when I was released from the hospital she would shave it in a back room. I told her I was not there yet, but that she could cut it. So she did. She was so nice about it, and totally understood me. She said she has dealt with many women with cancer, and could totally relate to how I felt. So she cut my hair shoulder length and it was a little poofy. She asked if I'd like it thinned down because of the length. Of course! Everyone knows how curly hair is not good short. So she kept cutting & cutting & cutting. By the end, my hair was pretty short. It reminds me of a picture of me as a baby with short curly hair. I think that was the last time my hair was ever so short. And I didn't even cry. She was so wonderful. I don't think I could have done that without her. After she cut it, we tried the wigs on again, and I found one that I liked. It looked much better with my hair flatter. It's short, but I don't care. My husband likes it and that's all that matters.

We went out for dinner, and I went out without the wig. Just my own short hair. It was different for the first few minutes, but now I'm getting used to it. I'll probably start using the wig once more hair falls out. It's still pretty thin, but not too bad now that it's shorter. I know you want pictures, but not yet.... I gotta get used to this more!

Saturday, August 2, 2008

The Adventures of Thelma & Louise

This morning Sebastian, Reanna & I went to visit my cousin Chrissy in Long Beach. We got to see her cute little home, and meet Teddy, her adorable dog. Teddy ~ if you're reading this, we can't wait for you to come & play with Peanut and Butter. We hung out at her house for a bit, mostly so I can hang out with Teddy. He is such a flirt, he tried to kiss me right in front of Sebastian. Then we had to part ways and leave Teddy behind. We went and ate lunch at Famous Dave's. Yummy. It was really good. After Famous Dave's, we headed over to the Aquarium. It was really nice and the weather was perfect. Not too hot, not too cold. I really missed holding hands & kissing Sebastian today. But today was not about me! Since Chrissy is not married yet, I agreed to share Sebastian with her today. Wait, let me re-write that. Not that she's not married yet. She's not married, period. We saw the sharks, stingrays (and Chrissy got her chance to sting one back, twice!), eels, seals, and much much more. Bummer that the otters were sleeping. It would've been nice to see them swimming around. But who am I to complain, when you tired, you need to rest. From someone who knows. It took longer than probably most people, because we had to stop & sit for a bit. But it was good because we got to talk and hang out a bit. After the aquarium, we called it a day, and I got my husband back ;)

I talked to Lori today, and she checked my messages at home. I will be admitted Monday. I know it's crazy, but I can't wait.

Friday, August 1, 2008

No Treatment Yet

So I showed up to Dr Gailani's office yesterday. I met with his assistant first and then Dr Gailani. After they both asked all the questions twice, Dr Gailani did not want to admit me. He wants to make sure that I don't have any GI infections. It's ok if I do have an infection, they'll just give me medicine to fix it. But they want to make sure if I have it or not. Plus he wants me to rest a little bit more. He was leery of admitting me again because I'm not 100% yet. He said it's like beating me while I'm already down. He wants me a little better so that my body can handle it better. He's off today, so I'll most likely be admitted on Monday. He told me to go to Disneyland for the weekend. I can barely walk around my house, and he wants me to go to Disneyland? Unfortunately that's not gonna happen.
It really messes everything up that I wasn't admitted yesterday. Now we have to fly Reanna home because she has to go back to work. Sebastian is gonna have to take another week off of work. And my mom was to fly out the day I got home to take care of me. Plus Lori is watching my house and Peanut & Butter. So everything is all messed up. Luckily everything is working out little by little.
About 1 1/2 weeks ago Reanna flat ironed my hair. So I didn't have to wash it for quite a few days. Finally on Wednesday I washed it. When I did, my hair fell out. A lot. Kind of like when it came out after my Interferon treatments, but more. I was planning on having her do it again, but was afraid it would pull out my hair more. Since I knew I'd be checking in the hospital yesterday, I didn't wash it. Of course I had to wash it today. Clumps and clumps were falling out. Just when I thought I was done, and my hair had already been rinsed, there was another huge clump. I was shocked and gasped. Reanna asked me if I was ok, because she was right outside of the bathroom. I just said "Yeah, it's just my hair falling out" The water pressure was not so good, so my hair was all knotted up. Reanna helped me brush it out, and more and more hair came out. I filled the garbage about 1/2 way will all my hair. If you see me now, it still looks normal. But I don't know know long this will last. Earlier today said he loves me no matter how much hair I have. He asked if I would still love him if he was bald, and I said "Of course!" He said he feels the same way towards me, and he said at least mine will grow back :) I told him I totally understand that. I don't feel like people will love me less, its just like a part of me will be missing. I don't think of my hair as my trademark (I think that my trademark would be my love of makeup ~ and I very rarely wear it lately, as it's takes too much energy.... so I'm not that vain!), but I am just having a hard time losing it. It falls out every where. It's on everything. I can only imagine how much will come out when I start the treatment again. I'm afraid to wash/brush it again, but I have no choice. I guess I shouldn't take it for granted while I still have it.

Thursday, July 31, 2008

Blow Out

We left town early in the morning, 4am to be exact. We stopped around 7am to grab a bite to eat and then headed over the grapevine. I was awake and talking to Sebastian, and watching the road. All of a sudden it sounded as if we hit something, but I didn't see anything, so I ask if it was a tire? He started to slow down and see, and the car got shaky. So we knew. Yep. We had a blow out. Luckily there were not too many cars around. We pulled over and waited for AAA to come out. It's scary on the side of I5 with all of the diesels driving by! We waited about 30 minutes, but once they were there they were fast. The funny thing is we didn't take our Mercedes because I blew a tire one time by hitting a small pot hole. Low profile tires blow easy. So all week Sebastian contemplated what car we should take. He kept saying, let's take the Explorer, it's safer. Proved us wrong. At least we made it here to Riverside safe.

Wednesday, July 30, 2008

Packing My Bags

I'm packing my bags. I am going back to Riverside in the morning. I check in @ Dr Gailani's office at 2pm tomorrow. Another round of Advanced Bio-Chemotherapy. Since this is my second time, I kind of already know what I'm in for. The only thing that scares me is that this time will be much worse, because I haven't even recuperated from my last visit. I'm now getting out and doing a few things, but still very limited. I have others do things for me as much as possible. Bending down to pick things up is a chore. And now that I'm feeling better, I'm gonna go get loaded up with medicines again. But as all the doctors have told me, and Kathie even re-iterated today, I'm young and my body can handle it. I am strong and will get through these treatments, no matter how rugged it is. There is no wi-fi at the hospital, so there will be no updates until I get home, unless Sebastian or Reanna want to do it.

I hope you all have a fabulous week/weekend. I know I will! Forgettable, I'm sure.

Monday, July 28, 2008

Bye Bye

The time has come, and we must say bye to Twinkie. I say this with a sad and heavy heart. Sebsastian and Paige took Twinkie to the vet this morning. I didn't hug her because I thought she'd be back. Oh how I wish I could pet her and give her just one more hug. And smell her stinkie breath (her nickname is Stinkie Twinkie) just one more time. I thought they were going to do bloodwork and call us back with results. But that didn't happen. The vet told Sebastian that she is up in age and suffering a lot. I wish he brought her back home. This is her house. This is where she belongs. With people who love and care for her. Our house will never be the same without her. She started out as our watch dog. But not only was she our watch dog, she was a member of our family. I grew to love her and would always stick up for her when Sebastian would get mad at her. Oh, how we are gonna miss her. I cant's stop crying. Will the pain ever end. We have never had to do this before. My heart hurts, as does the lump in my throat.


Saturday, July 26, 2008

Before & After

My sister Maria was able to find a pic with all of us before! I know all my cousins are gonna be mad, oh well. Too bad. I wouldn't have posted it if you could see all of me :) I got the best spot, ha ha. The pic above is my sister Liza and her sister Debbie in the very back, then row 2 is Michael, me & Kenny, row 3 is Chrissy, my grandma & Vickie.

In the photo below its Kenny, Michael, me, Vickie & Chrissy.


Here are pictures of Twinkie. I just love her! The first is of her in Butter's new bed. She had her own, and it was big, but she likes the smaller beds. Crazy, I know. The second is her in the kitchen, and the last is her in bed in our room. She has even gotten into the tiny brown one in the corner. Yep, she squeezed into that one too. I thought I had a pic of her in there, but I can't find it!!! When I find it, I'll post it.

Friday, July 25, 2008


I feel most of the time I was in Riverside I was in a fog. I remember my first day there. We got there about 3am or so and checked into our room. We woke up around 8am or so and drove across the street to the hospital. We just wanted to find where we would be at. Once we knew where the Oncology Dept (The ABC clinic, which stands for Advanced Bio-Chemotherapy) was, we went to breakfast. After breakfast we showed up at Dr Gailani's office. Everyone there was so nice. The first lady just took me back and took my blood pressure, etc. It was low, and we told her that for me that's normal. Sometimes I'm normal, and a lot of times it's low, so I guess low is normal too...crazy, but it's true. Anyway, after that we waited a bit and then we got called into the physicians office. Dr Gailani's assistant came in and had my whole medical profile there! She asked me questions about my whole medical history, some stuff I had even forgotten about. But yep, she had notes on just about every visit I ever had, even pre-cancer. It was crazy! Then Dr Gailani came in the office and asked me all the same questions. They are really thorough and want to make sure nothing gets past them. It seemed repetitive, but in a way its good. While meeting with Dr Gailani, I learned that I have Metastatic Melanoma. For some reason I thought that metastatic was when it went to the brain, but I was wrong. Stage IV is metastatic. There was a chart in his office, and he asked me where I thought I was on the chart. Well, obviously I knew I was in the bottom stage. But I didn't know where. There are 3 stages of stage IV. I told him I knew it was in my liver, but the words that described them all didn't have any organs. So I told him I wasn't sure. He looked at me and told me I'm M1c. I'm in the bottom stage. There is no worse stage I could be in. Of course the statistics on the bottom stage was the very worst. Sebastian just sat there and started crying. My heart was going out to him. I did not want to break down in front of the doctor, and I think I kept my composure pretty good. But I kept looking at Sebastian and all the fear in his eyes. He was not taking everything very well. My dad was with us, and he was visibly upset also. The good thing is, he is a very good doctor, and he says that those statistics are not for everyone. His treatments are very good, and hopefully those statistics rise due to his work with melanoma patients! Right before leaving his office, Robin stuck her head in and introduced herself. She is extremely nice & helpful.

After meeting with the doctor, they took me over to the hospital section into the ABC wing. I didn't realize there was a whole wing just for his patients. I was very happy that everyone gets their own room. YEAH. I didn't have to share with anyone. So a few minutes after getting me to my room, they wheeled me down to ground level. They took me to this room with a lot of nurses around. It was where they inserted a tube in my neck. When I got down there, the nurse was really nice asking a lot of questions. He asked if he could pray for me, and I said of course. So right there while I was lying on the procedure table he prayed for me. It was really nice. After that, a dr came in and inserted everything. I was shocked at how many people were needed for this procedure. When I got my picc line, it was just one nurse practitioner. Here there was at least 5 people. I wonder if it was because it was in my neck versus my arm? And of course they used tape to keep it in place, and my whole neck got red and itchy. Anyway, after that they wheeled me back to my room afterwards and started hydrating me. The first day they just have IV's because they want to make sure you are properly hydrated. The next morning I started the treatment. Much after that is a fog to me. I really don't remember too much, mostly what my dad & Sab had told me. I do remember that on Saturday my cousin Chrissy (aka Louise) came out to visit me. She was supposed to bring a helmet and break me out, but she didn't! We did get in trouble though because they had given me chemo in my IV, and we left the ABC wing and were walking the hospital walkways. Little did I know that was a NO NO. With chemo in my IV, I can walk around, but must stay in the wing, which is very small. Guess I won't do that again. That night or maybe another night, I don't recall, but I had a high fever, 103. It wasn't coming down, so they made me got off the bed, and they stuck this cold blanket on the bed and made me lie down on it. Everyone who knows me, knows how much I love the cold. NOT. Then they laid 5 ice packs on me. It was sheer and utter pain. I hate the cold. They made me lie and sleep on the blanket all night. It was even connected to this a/c machine or something, so it was like 52 degrees. I was hating life. The next morning my temp went down, so they removed it. I was soooo happy about that. Later that day, my temp started rising again, and immediately they were being proactive and started putting ice packs all over me. I hate that, and I started moving them so that they weren't touching me. I remember the nurse got really mad and yelling at me, and I just remember thinking, I don't care. I'll move them when she leaves again. But Sebastian was there and he wouldn't let me move them. And he also took my blankets away! Luckily for me, my temp never got too high again. Most of everything else in between all that is forgotten. I do remember get a phone call or two, but that's about it. I think my sis Maria called me once, but I don't even know who else. So if it was you, I'm sorry!!! Even today Sab told me the day I was released we ate KFC back in the room. I do not recall that at all. He said I had a piece of chicken with potatoes & mac n cheese. I looked at Sab stunned. I do not recall eating chicken? I was asking what kind it was, what piece was it? Crazy how I've done things that I can't remember. Anyway, I do remember waking up first thing in the morning and Sebastian driving us home. I slept the whole way :)

Wednesday, July 23, 2008

The Party's Over

Yep. My pity party is over. I really hate to be a downer, but that was just bugging to get out of me.

I keep looking at our beautiful boxer Twinkie. I love her so much. She is really getting up there in age, sometimes can't hold her food in very well, much like me! But she is so graceful. I have this feeling that she is in so much pain. But she humbly accepts it like a lady. Me, I'm far from that. When I'm in pain, everyone knows. I think even my neighbors can hear me yelling & moaning. I'm not as graceful as Twinkie. I hate to say we may have to put her down soon. She has been with Sebastian longer than I have. We are all having a hard time dealing with this. We are taking her to the vet next week to get her checked out. I hope she is o.k. I'll post a pic of her as soon as I can. She looks mean, but she is the sweetest dog. When you come to our house, she is very protective and stands at the door like it's her house, and she wants to know who you are before you enter. Once you're in, she's the happiest dog ever, turning in circles as if you are there to visit her. If you're eating, she'll put her cute mug in your lap, and she'll look up at you showing you the whites of her eyes. If you touch her, she won't leave. She'll stay there and expect you to pet her. She does not leave, even if we yell at her. She definitely runs our house. We love you Twinkie.

Tuesday, July 22, 2008

I've Been Robbed

I've been getting better by the day. I'm still really tired and exhausted, and I'm even eating a little bit here and there. I just ate an oreo cookie! That is a big accomplishment for me nowadays. Before that's just a snack, but today it was a meal.

I've been thinking about why this has all been happening to me. I get so many messages that I'm so strong, courageous, etc. but for some reason I do not see that. I try hard to be positive, but sometimes the negative takes over me. I think today has been a negative day. Why has this disease come in and taken over? I read an email from Petra that she would buy a t-shirt if I published one from my July 5th post. So I went back and read that post. And I feel like I have more to add to it. Have you ever been robbed before? Well, years back our car got broken into and I felt violated. Like someone had gone into our personal space without our permission. Right now I feel the same way. This disease has entered my home without my permission. I am robbed of my time, my energy, my life. I can't even work right now. Like I want to? JK. I do love my job, and the people I work for and with. I don't even know when I can go back, or if I can go back. I look at my dogs and just wish I could walk them, but I can barely get from my living room to my bedroom without getting totally exhausted. And my friends/family. I love to talk/hang out, etc and even that is draining on me. My sister Anna came over the other day and I was really excited. But by the end of her visit, I was lifeless. I got sick less than two minutes of her leaving. Going to the dr's today to do more lab work was a whole days work.

So what's my point. I don't really have one. I just feel like I've been robbed. I want my life back. I just want to be with my friends & family and have no worries. I feel like I'm trapped in this body that's deteriorating and my heart and soul wants to flourish.

Sunday, July 20, 2008

I've Been Too Tired To Post

Hi Everyone. I know people have been waiting for an update, but it has been a long and rigorous ride. I went to Dr. Gailani's office and had one week of treatment. Little did I know, that was the vacation. I guess the jokes on me. Coming home has been rough. Luckily for me, I've got a great support system and would not know what I would have done without it. Dr. Gailani has a great staff. Everyone there was so kind and nice, kinda like being at Disneyland. I did my treatments, and my dad and Sebastian were there with me all the time. As I remember, I'll write more about them, but right now it's a bit foggy. I was even lucky enough to have my cousin Chrissy (aka Louise) come and visit me on Saturday. I think the final day was Tuesday, but we actually came home on Wednesday, as to not have to deal with LA traffic. The ride home was perfect, but everything after that was bad. I could not (and I'm still having problems, even on Sunday) hold any food down. Not even liquids. Finally yesterday Lori & my dad took me to the ER to get an IV because it was so bad. And the dr was so cute, I kept thinking, is he married? But I couldn't bring up the nerve to ask him, I could barely tell him my problems. I wasn't thinking for me, of course not! I love my husband. But for my friend Lori. Lori, I forgot to tell you, that dr was cute, I should have been more bold and asked him for you. Next time. (I have his name on my pills you got for me, if you want to google him!!!).
I have not had time to read everyone's postings or emails, but will get to it as I get energy. This is as much as I can do today, but you can count on me. I'll be back before you know it!

Thursday, July 10, 2008

I'm On Vacation

Yeah, right. Got ya looking though, didn't I? Last night Sebastian went and took his test, then right when we got home we left. Kinda felt like a vacation. My husband is the greatest husband there is. But when it comes to vacation, watch out. Something gets into him and he is just awful. The slightest thing will upset him. So of course last night after he got upset, I told him to just stay behind, we'll be fine without him. Then he's begging me to let him go, and instantly changes for the better. Ten seconds later the dogs got out of the house, and there he goes again :) I just love him.... We got out of there in one piece, and made it to Riverside early in the morning. I had to go get my blood work done, then we went to breakfast. After breakfast, I went to admit. I met a few nurses, Robin, and the finally Dr Gailani. He was very straight-forward. No sugar coating. I even learned a little bit from him. Previously I knew Interferon treatments helped the survival increase rate by 10%. But his explanation was it gave me a few months more before it would come back. ???? Why did I waste a few months doing Interferon when that's about all the time that it gave me? Anyway, I'll leave that question for another day.

I go back to the hospital in about 1/2 hour to be admitted. After that I'll have no cell and no computer. What a bummer. So you won't be hearing from me probably until after I get home -sometime next week. I'd love to write more about my appt w/Dr Gailani, but I don't have the time. Oh yeah, according to the charts in his office I have Stage IV, M1c. The worst type of melanoma. I didn't know that Stage IV had different levels, I've never seen that before.

Have a great weekend all, hopefully better than I will.

Saturday, July 5, 2008

July 5, 2008

One year. Exactly one year ago today I found out I had melanoma. What I knew about melanoma then and what I know now is mind boggling. How this disease has gone from a mole to affecting my whole body is unknown. I did not ask for this disease. I did not invite this disease into my home. It has unwillingly taken residence in my body. My body. And it does not stop. Why is it so damn aggressive? It could've stopped long ago. But it does not give up. And neither will I. I will fight this disease with every being in my body. I will do whatever it takes. I will fight more aggressively than the melanoma itself. I gave up on the Interferon. My body could not handle it. That will not happen again. I will prove myself, and I am stronger than this disease.

Tuesday, July 1, 2008

I'm Trying My Best

I'm trying my best to get back to everyone who has contacted me. It is rather difficult though. Please be patient. I have received many e-mails, and I read them all. Every single one. Sometimes they are so nice I read them over & over. But I do not have the time to answer everyone individually. I'm trying to do that little by little. I'm still working, and have my family to tend to, and of course my husband makes me rest & elevate my leg ~ a lot. I try to update here before I reply only because I know people are looking for updates, and I can reach a lot more people here than individually. And you all know that I when I'm with you, or write you, I give my undivided attention. So when I get to your message, please know I put my time, heart and energy into it. I can't tell you how important all of your messages are. They are so encouraging. I hear so many kind things ~ do you all have the right person? Did you get me mixed up with someone else? They touch my heart in so many ways. Sometimes I just sit in front of the computer and cry because they are all so beautiful.

So to answer a few questions I see repeatedly. I'll try to do it so everyone can understand, but sometimes I forget. Sometimes even I don't understand :) I have had 3 surgeries. The first was 8/13/07. Due to the amount of melanoma in the mole that was removed from my knee, they went in there and removed what tissue they could, and then removed 2 lymph nodes in my left groin to see if it spread. They found it had spread to my lymph nodes, so on 10/2/07 they removed the remaining lymph nodes (13) in my left groin. Of the 13, only 3 were positive for cancer, so they thought it was really good. I did treatment for about 2 mos, and life went back to normal. At my 4 mo. checkup, it was found that it had returned to my left groin area. Although the lymph nodes had all been removed, it's possible that a trace of cancer was still there. It used the scar tissue to regenerate itself. On 4/22/08 was surgery #3. The cancer was visible on my leg, and all of the skin was removed and the old scar was cut out. Dr. Kutner tried to get it all, but couldn't. Other thing I hear a lot ~ I don't look sick. Well, to be honest, I don't feel sick. The only time I feel sick is after surgery and when I did my treatment. Other than that life is normal. I guess that's what makes it hard sometimes for me to even accept this. How come I only feel sick when I'm trying to fight this disease? Believe me, I can do without the feeling sick part. Not the best days I've had. Last question ~ Yes, I'm still working. Part-time. My work has been very generous and I like to work because it's an outlet for me (just like writing here!). It gets my thoughts off of myself, and my situation.