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.