Rambles ...

Wow! I cant believe how crazy and hectic things have been around here. I have been at the ACTCA for the past 18 or 19 days and now im just not really sure. This is the first time that im able to be on the computer in awhile and its a bummer that im really tired and drugged out.
Lets just say that I have my PICC replaced, had a balloon around my vena cava (sp?) to help my heart, a chemo shot everyday, having to be put on oxygen then realized that it was actually not good for me, and actually finished radiation. Now the future plans are to have another surgery on the liver and continue on with my chemo treatment.

But despite all the craziness I am happy to say that my tumors continue to shrink with the radiation and the bleomycin. My blood pressure is back to normal and the heart rate is also normal with the medication that Dr Burke prescribed. I hope that the liver surgery will go smoothly on Monday and that I can just continue to concentrate on only the chemo for the next couple of months. There's more that I wish to share with all of you but the pills really wore me out and let me tell ya this IV pole is not light ha ha! so when I have a chance I will write more. Thank you for the love and support that everyone has given me....I want to let you know that im doing alright and im continuing to fight it. :)

x0x0,
Rina

The new drug ....

Today I had my second dose of Bleomycin. It was a rough day for me because early at about 2 AM my mom took me to the ER here in Stillwater because my temperature was at 104.1 F which considered to be dangerous and also my tumors were giving me major pain that I was crying in agony. I couldnt move my left arm without feeling like someone was pushing a knife through my shoulder. My Fentanyl patch (pain killer) wasn't cutting it anymore and so I took Dilaudid, another form of pain killer but the pain was still there and I was burning. The hospital was able to ease my pain by giving me more of the Dilaudid through IV so that it would work quickly while at the same time giving me some Tylenol to lower my temperature. After staying for about two hours the pain was gone and I was discharged from the hospital even though my temperature was still a little bit high but I was no longer in the risk zone anymore. We stopped by some McDonalds to get some nuggets which was quite nice to have after a cruddy night. hah!

Unfortunately, I forgot that Dilaudid would make me itch all over my body. I could not sleep the rest of the night. I wanted to tell my mom about it but she was fast asleep and I really didnt want to bother her with it. So I sucked it up but I was powerless and kept on scratching where it it itches. The lack of sleep caused me to be breathless and a high pulse rate that would reach to about 150 to 160 (normal rate in a resting position should be about 100 or so). I kept trying to sleep but it was impossible. Tante Haerani and my mom drove me to Tulsa for my chemo.

I am hoping to meet with Dr Calava, the pain specialist regarding my narcotics and its reactions. I have a hard time with morphine which causes nausea, but im beginnning to wonder whether it would be more tolerable thant taking Dilaudid for the pain. Maybe Dr Calava would be able to suggest other pain killers that would help. My dietician is trying to make me gain a little bit of weight because im losing the pounds way too quickly and gave me a menu that would be filling but at would still follow my organic eating plan. I am a firm believer that the chemicals out there whether its in our food or airborne is a major reason for this horrible disease.

Off topic: my mom is the best! I really dont know how she pulls off from difficult tasks.
I will also share my time as a terminal patient under hospice and how we found Dr Pollock :)

xoxo,
Rina

Hello CTCA ...

I cant believe it has been two weeks that I updated my blog. Things have been pretty hectic and emotional around here. I received my second dose of Vincristine at Cancer Care but as the days passed I noticed that the chemo did not treat the tumors at all and the growth continued. I must say that I was really disappointed with how things were going. I am glad that the swelling is not giving me any discomfort because of the new Fentanyl patch that I have started to use. The amount of pills that I had to take everyday continue to increase and it sunk me into a deep depression. I hate to think that things may get worse for me instead of getting better. As usual my parents was my rock they continued to support me and helped to fight on.

During a doctor visit with Dr Puckett I received a shocking news, he informed my mom and I that the treatment choices for a cure is no longer available. I was recommended palliative care and that the only thing left to do is to make sure that I was comfortable. I could not believe it! I didn't want to believe that I might be dying! But I wasn't going to give up that easily. My mom and dad worked to the point of exhaustion to find oncologists and hospitals everywhere that are willing to treat me. It wasn't easy but we found Cancer Treatment Centers of America. It's a great hospital that can be compared in quality with MD Anderson, Mayo Clinic and Sloan Kettering. I was also happy to meet with my new doctor, Dr Pollock. He's had 35+ years of experience as an oncologist, had worked at Sloan Kettering and also opened up a private practice for many years, led top researches in neck and head cancers and most importantly are willing to take on my complicated lymphoma case. My mom was a little hesitant that he might give up on me if options run out and he joked "even if we hav to intravenous dog poop through your daughter we will give her something and I will keep trying to treat her." hah! what a silly doc! After he goes on with the different treatment possibilities I know that things will be alright and I hate to consider myself to be terminal. I trust that Dr Pollock will be able to take care of me and the rest of the CTCA team, which consists of other medical specialists.
Well there's more to share but I am getting tired at the moment so I shall continue this at another time. Wish me luck that Dr Pollock's plan of treatment will be successful. I plan on meeting with him again this week and perhaps start the treatment at the same time.

I hope everyone had a great weekend!

xoxo,
Rina

Things are going well...

The Cytoxin regimen has been tolerable so far. Its a four day treatment and im halfway done with it. After that I will be receiving a week of Neupogen shot while continusly being watched for infections and doing blood work. I take about ten pills a day, its such a pain but I know they are just preventive stuff and I know its better than coming down with something horrible like pneumonia or something. I do hope that this good fortune will continue and the tumor will continue to shrink and slow down the growth.
Its sad that Valerie, one of the Cancer Care nurse, no longer work at the clinic. She was such a wonderful nurse and human being overall. So caring and she took care of me well. I wish her the best to whatever she choose to do from here. I will miss seeing her face and caring personality at the center.
Yesterday was the first time that I was able to go to the stores and shop in a long time. It was really nice to be out and about and do something that I love to do which was shopping and it was so much fun! :)
That is all the news I have and I hope that everyone had a good hump day today.

xoxo,
Rina

And it continues ...

Im happy to say that the lack of update was because my health has been improving. Although the cancer and the swelling is there, the growth of it have been under control and slow. I was able to be more active within the past week and are able to do the stuff that I want to do. Although I am feeling well my weekly blood work showed that my red, white blood and platelets shows that I am prone to infection and are not at the level that is safe.

My platelets are low and they usually do not treat patients with the count of 46, but Dr. P had decided togo and treat me tomorrow. Please pray that everything will go smoothly and that my health continues to improve!

10K Nike Human Race...

My friend, Kim, ran the 10k Nike Human Race in Austin, TX. She suprised me by running the race in my honor. Kim has been a wonderful friend and support. She is definitely a "winner" in my road race. Thanks Kim!

Things are progressively getting better. The sores in my mouth are gone and even my taste buds are back. I can taste the food that I eat again and its wonderful. I am still struggling with my fever despite having taken Tylenol, my temperature would always go back up to around 101 to 103. Also, the mystery rash on my chest is still there and now its starting to itch. My mom would put powder on it which would relieve it a little bit. Whenever I am in pain I keep remembering that God still cares about me and he would not give me a challenge or difficulties more than I could handle. I know that all of this has made me into a stronger person. There is always a positive that comes out the negative.

So there's wildflowers growing outside of my backyard and I saw some sunflowers blooming, I decided to pick one up and put it in my room. The flower looks gorgeous on my desk. The other thing that made me happy was the fact that I was outside and was able to enjoy the nice weather.

Over the weekend there was a car wreck that killed three OSU students and one of them was a close friend of mine. Christian Wright had an addictive personality and was someone that you could count on for anything. When I heard that he and his girlfriend as well as another person passed away I couldnt believe it. I saw Christian not so long ago and he gave me a hug and said "you get well soon, I dont like seeing you sick" haha! He made it sound like it was an order that I have to finish. I will miss him greatly and my condolences to the family of Kelli Mellon, Christian Wright and Chris Bellmer. I really hate when something like this happens. :(

Im happy to say that the side effects have been much more tolerable. The ringing in my ears no longer give me headaches but its still giving me a hard time hearing. Volumes have to be turned up and talking to me you will have to speak a little louder. Making phone calls is difficult because of this and I apologize if I havent been able to speak to you on the phone. Please realize that talking on the phone longer than a few minutes will give me a headache.

Energy level is a little low and I started to have rashes all over my chest and shoulder because of low platelets. They itch just a little but once my blood counts go up they will dissapear and hopefully the mouth sores as well.

Thank you for all the prayers and encouragements, things would be much more difficult for me without it. I also want to say that I have the greatest mom in the world. I have never met anyone so patient and caring and I dont know what I would do without her. She is a great mom!

PS:
I am sending my prayers to those living near the Gulf Coast and I hope that they will be protected from any harm.

Sorry for the lack of happy posting, well actually lack of postings in general. I have been feeling lousy since receiving my chemo last week and still not feeling any better. The body aches continue to be bothersome and the shortness of breath makes moving around from room to room difficult. I feel like my independence slipping away as I have to rely on my mom for alot of things such as preparing food and getting my clothes ready. The worst side effect that im feeling right now is the constant ringing in my ears. This high shrill noise has been going on for a few days and its putting pressure on my head that results in severe headaches. I feel like im losing my hearing that I have to ask people to speak up when talking to me. It doesnt seem painful but trust me all of these side effects can really ruin your everyday routine and suck up all of your positive attitude.

I am so down and out that I just move from the bed to the couch and back to bed and not care about anything. Im complaining, but I dont care. Im frusturated. I want it to end. soon. Is that really too much to ask for? :(

I really dont feel good. I hope this gets better soon.

:(

Last chemo for a little while...

Yesterday and today I received my high dose Ara-C. This should be the last one for awhile (at least three weeks) depending on what Dr P recommend and what the tumors are doing. Today with all the pre-meds that the nurses gave me I really dont remember the times that I was there. It was either because I was so medicated or simply too tired and slept the whole entire time I was at the clinic. I am on so many pills more as a preventive measure rather than to treat the symptoms. Now I just feel lightheaded and tired constantly. I am still trying to figure out whether we took it too far with the preventive medications because I just feel useless right now.

My mouth is the only thing that is bothering me. My taste bud is awful, nothing tastes the way its supposed to and I keep tasting this acid-y taste which is very uncomfortable. The mouth sores are starting to make its debut in my mouth and the nausea will come and go during the night. Sleeping is starting to get uncomfortable but im still happy that I can squeeze in some sleep despite the random side effects. I am not feeling any pain from the tumors in my shoulder but I really cant tell whether its because of its size or the amount of painkillers that im taking.

Writing is so hard. I am beginning to get really tired. I want to apologize to those that have been trying to call me and I have not been able to respond. Please keep those encouraging messages comign through, I really do enjoy it when my mom read it to me. I love staying connected to all of you and thank you for continuing to be there for me! :)

To my fellow friends, have a fantastic first week of school! I wish I could be there on campus right now...

More pump...

I feel fortunate that things are going moderately well. Although my tumor is growing the swelling is not too bad and hasnt cause too much pain or making me cough. Eating is still difficult because of lack of appetite and taste change. It makes me a little sad that I dont enjoy eating as much as I used to especially when I remember loving my mom's cooking so much.

I went to the cancer center this morning for chemo. I am happy to know that all my blood counts are back to normal and there were no glitches with the treatment. I will be receiving Cisplatin on the 24 hour pump. So I will be coming back tomorrow for a different drug. Hope that the treatment goes well.

What I dont like about chemo is how tired it makes you feel. I really wanted to write more, but all I could think of right now is a nap. Which I think I will do right now. :P

I guess I just want to use this opportunity to say thank you to everyone who has helped with the fundraising. Whether is with your time and effort or through finances, I have never been so close to my goal of raising $100,000. The cost of the transplant seemed so daunting two months ago, but now its really comforting that we are at $81,000+ and really close to that final cost. So many people worked so hard and it is because of all of you this has been possible. Its such a cliche to say, but I feel like the most luckiest girl in the world.

Things are going well for me. I have never felt so good and healthy as I do this week. My blood counts are still really low, but im hoping that with yesterday's blood transfusion that it would take care of the low counts. I'm hoping that tomorrow's blood work will show continued improvements in counts so that I will be able to continue on with the DHAP chemo next week. The DHAP worked really well with the tumor despite being the cause that I was in the hospital.

Some may know the story about Eric Shanteau, the US Olympic swimmer, who despite being diagnosed with testicular cancer just last month continued to compete in the Olympics. He chose to delay treatment because it will put him out the waters for weeks that could put him out of the games. I find him to be so inspirational with the way he continued to pursue his dreams despite such a devastating news. I'm sure his family is going through alot with his dad also currently battling stage 4 lung cancer. I really thought that what he said is something that all cancer patients, old and young, should go by. "You can look at it one of two ways, you have cancer or cancer has you."

Uneventful - Just how I like it...

Things have been going positively for me the past few days. My health continues to be better and my energy level is going up. I just want to say thank you to Judith Karman Hospice for allowing me to borrow a wheelchair and letting me use it for as long as I need it. Moving around is alot easier and I am not so tired anymore. It was definitely a wonderful surprise and has come to be very useful for me.
On Saturday, there was a Mexican Benefit dinner to raise money for my transplant. Thank you to Miriam for cooking the wonderful meal. I have never tasted such a delicacy before. I wasn't much of fan of mexican food, but after the dinner I was convinced that enchiladas are the best thing ever. Not only were there chicken enchiladas there were also a vegetarian dish as well. I was very happy and humbled that so many people showed up to make the event so sucessfull. About $1300 were raised that night. I feel so lucky and blessed with how the fundraising is going. A hundred thousand dollars seems impossible about two months ago, but with the help of so many kind people I am very close to my goal!
I twisted my ankle after the dinner when I fell outside in the rain because I was a klutz. If it werent for the help of Haerani (a wonderful woman!) my ankle would probably be swollen. It still swell up the next day but I know it would have been worst if if werent for her help with the ankle.
I will see Dr P tomorrow. Hopefully things will go the way its supposed to tomorrow.
I guess thats all for now, I do hope that everyone is enjoying the olympics, I know I am! :)

Low platelets...

Apparently I was wrong with my self-diagnosis. The cause of the itchiness and the redness was not caused of by the summer's sweltering heat, but because my platelets were low. My blood is unable to heal itself which explains that spots on my skin and the really bad itch. I found out about this when I had my blood drawn today at the Cancer Center. I wondered why they kept me there for an unusually long time when all I had to do was some blood work. I knew something was not right and Anita (the nurse) notified me about the condition of my platelets. She wanted me to get a platelet transfusion and so it is.

Around two this afternoon I went to the infusion clinic to get some platelets. It looks nothing like blood. In fact, its gooey and yellow that reminds me of a thick creamy broth. I had to take some tylenol before the transfusion to help with my never ending fever problem. After getting my temperature to be around 100 or so they finally gave me the platelets. The transfusion was short and sweet because it lasted only 30 minutes. It made me very happy. So far there's no reaction and im continuing to feel better and better. My energy level is improving and hopefully with the extra platelet boost I can have a good weekend. My appointment with Dr P has been bumped from Monday to Tuesday.

Right now I am still on alot of medications and I dread the times during the day when I have to take those pills. I hate pills and despise them more than anything. Its a crazy love/hate relationship that I have with my meds. I know that I cant get better without it, but I hate the crazy side effects that comes with the pills and plus one of my pills to help with my potassium level are the size of horse pills. They're huge! I gag everytime I take it, even when they're already cut in half. Meds taste disgusting and they leave a horrible aftertaste as well.

Well thats all I have for now. Please know that your support and prayers has really helped me get through this tough time. Please wish me luck that my body will continue to heal and that the tumor will stay under control since I will not be able to receive any type of treatment next week, which is very crucial. Have a wonderful evening everyone.

The never ending itch...

Im happy to say that because of my mom's TLC everyday is alot better day than before. I am able to tolerate the pills and are eating alot more than I was. Still not much food, just little stuff like broth for lunch and one scrambled egg for the evening with ensure in between. I could feel my energy level picking up and I was able to control the times that I doze off alot better.

Moving from one room to another is still a little hard. I would get a little light headed and out of breath, but with lots of rests and moving slowly helps with the problem. For the first time in a week, I finally saw how tattered my legs are. I dont know whether its because of the chemo drugs or the drugs they gave me at the hospital, but I had a major sweat and itch problem while I was in hospital. The itch was so bad that I could care less about anything else, so I scratched the heck out of it. Now my legs are hurting a little from the continuous scratching and well now it looks like my legs were mauled by tigers and it definitely doesnt help me walking from one place to another either. My mom has been good about making me to stop scratching so that the welts and the redness could heal. But dont tell her this, I scratch when she's not looking. I feel guilty.

I am due for a check up tomorrow. I hope things are good and that im on my way to recovery from this rough week.

Just wanted to let everyone know that im still around. After my chemo on Tuesday and Wednesday my overall condition was awful. My nausea was so severe that I kept losing everything I had in my tummy. I couldnt eat, drink, or even hold my pills down. I went to the hospital on Wednesday and because of many different complications I wasn't discharged until Sunday evening. It has been an awful week for me, I am not completely out of the woods yet, but im glad that im out of the hospital. The doctor is going to monitor me this week and we'll see where we go from here. :(

I'm pumping again...

Today's visit to the Cancer Center didn't start out well. We showed up bright and early as I was eager to start my chemo treatment. It was something I was looking forward to the whole entire weekend. Ever since Wednesday the amount of painkillers that I took kept increasing and by Sunday I was so drugged up that all I did was sleep.

Unfortunately, there was a mix up at the CC. Apparently, Dr P forgot to mention to his staff about the change of treatments. To everyone, they thought I shouldnt be there until Tuesday to receive the Methotrexate. I told them that I met with Dr P on Friday and he had changed it to Cytoxin. It took about an hour and a half to clear the misunderstanding and it was a painful wait for me in the lobby as the painkillers started to wear off and my shoulder was throbbing a little bit. Anyways, I was very happy when they finally let me in the treatment room, although they wouldn't start my treatment for another hour after that at least I was allowed to sit in those comfy lazyboy chairs and have a pillow and a blanket that really did the trick for my achy body.

Then I found out that I wouldn't be receiving the Cytoxin, but instead I got Cisplatin......on a pump. :( I thought that I wouldn't have to see one of those again. But oh well, its only for 24 hours so it shouldn't be too bad. I would take the pump any day over this silly pain. Dr P has been consulting with another oncologist in Tulsa, he told me "Two brains are better than one" I think that made my mom happy. She's been really concerned with all the treatment failures.

The Cisplatin wont be the only chemo I will be receiving this week. Tomorrow and Wednesday I will be getting a completely new drug that I have never tried before. So new that I totally forgot the name of it. hah!

Anyways, its been 8 hours since I took my last painkillers. That makes me really happy, I really hope that I will no longer need it soon. Though tonight I will probably take some just to make sure that I sleep tonight and not be a pain in the butt to my mom at 4:30 in the morning! Dr P also gave me some morphine for the pain, but I probably wont take those. Simply because my stomach cannot handle it and I usually end up losing whatever I ate that day. Not a pretty sight! So I think I will avoid all of that.

Everything is looking good. My pump is...well pumping, the shoulder pain is under control without the help of painkillers, and no evident side effects so far. I do hope that this will be the one! :)

New strategy....

Well, the Methotrexate didnt work. After Tuesday the swelling on my shoulder wasnt getting any smaller and in fact I noticed it was beginning to grow. The growth was not much but it was enough for me to notice. Yesterday I met with Dr P to let him know about the situation before I would receive another dose of Methotrexate next week. He seemed a little concern and especially if the tumors really are growing it really doesnt give him much time to think of another treatment plan for me. But he tried to assure me that there are still options for me. So on Monday I will receive Cytoxin. Although I have received this drug before this time it will be a much bigger dose. It wont be transplant dose but it will be pretty high.

I wont lie and say it was easy to hear that another treatment plan has failed again. I am also a little concerned with the whole trial and error method that Dr P has picked for me. The side effects are not easy to handle and all these failures is taking a toll on me psychologically. The pain killers have kept the shoulder pain at bay but besides the shoulder pain I am feeling just fine. I am happy to say that I am eating a normal amount and sleeping just fine at night.

The cough is a little annoying, as usual. I am beginning to forget the last time that I wasn't coughing. After my meeting with Dr P, I went to the hospital to get a chest xray to see how my lungs are doing. I will not receive the result until Monday but im pretty positive that its because of the mass on top of my lungs. I dont think that my cough will dissapear completely until the cancer in my chest area is taken care of.

I am trying really hard to not lose strength or my will to fight. Dr P and I realize that my case is unusual and that getting to transplant has been a difficult one. Please pray for me that this Cytoxin will provide a much needed relief and a better success.

By the way, thank you all for your love. I know all of this would have been ten times harder if it werent for your prayers and support. :)

Holding up just fine...

My updates are getting a little harder to do. Please forgive me. I have been more and more tired that all I really want to do is sleep and rest. I will probably let someone else do the updating for me probably my mom, I feel bad dumping this on her, but I dont know how well I can do this.

I went to the Cancer Center to receive some more Methotrexate. I sucked on ice while getting the drug. Sucking on ice helps cut the circulation to my tongue and the general mouth area with the hopes that the drug will not affect my mouth and avoid the possibility of mouth sores. My mom also bought special mouthwash and toothpaste that I have diligently use everytime I wake up, eat, and go to bed. I would rather overwash my mouth this week rather than contracting sores. I guess cleanliness is key to avoid crazy side effects.

My back is feeling much better. Whenever I overwork myself the pain comes back and so I try not to overdo anything and make sure that I get plenty of rest throughout the day. Slept the day away after my chemo yesterday. Today I am also struggling with the fatigue, I do hope that my energy comes back soon but at the same time I am very grateful that its the only major side effect that I have to deal with.

Please forgive me if I havent returned your phone calls or emails at the moment. I am having difficulty finding the strength to talk or be on the computer for a period of time. I will open all the emails and listen to my voicemail whenever I start feeling better. Visits are also difficult right now as much as I enjoy seeing everyone's lovely faces I just cant focus.

I hate this situation. I hate taking my meds. I hate feeling lousy and in pain. I hate that I cant be out and enjoy the summertime. I hate seeing my mom so busy and overwhelmed.

But as much as I hate all of this I know that life doesnt stop just because im upset. I am old enough to know that I have to face life's challenges head on. No matter how much I hate it.

Not bad, but not good...

I just got back from my visit with Dr P. The Methotrexate seems to be working on the tumor because the swelling is hardly noticeable these days. He wants to continue on with the Methotrexate by having the treatment tomorrow. He actually wanted to do it today but I would need to pick up the Lecouvorin first. So instead we will start the treatment tomorrow. Then the next week we will do another Methotrexate. After the two weeks of treatment, Dr P will re-evaluate my condition and see whether or not its time for transplant.

Weekly Methotrexate?? Yikes! Im concerned. It took me ten full days of no chemotherapy to regain my health back. I dont know how im going to be able to handle weekly Methotrexate. But I trust my body and Dr P. I know that he wouldnt recommend this chemo regimen if he doesnt think it will work on my cancer.

I wish my cancer wasnt so aggressive. They seem to grow pretty fast, I just want a little break from it. From all this chemo side effects and tumor pains. Where I can have more than a week that I can be like myself again and not feel any sort of discomfort from either the chemo or the tumors. Who would have thought that the road to get to transplant is filled with bumps and alot of detours. It feels like forever before I can finally reach transplant.

Well wish me luck with the Methotrexate. Hope the next two weeks will be filled with minimal side effects and bye-bye tumors.

I cant believe tomorrow is Monday already...

Its Sunday. My mini mission is not going well. About yesterday afternoon my neck was cramping a little bit. But as the hours progressed, the pain got worse and the pain shifted from my neck to the middle of my back bone. I had difficulty moving my arms and turning my head. I feel much better today, but my back still hurts everytime I move my arm or my head. Hopefully, lots of rest will do the trick. Monday is tomorrow, yikes!

The garage sale was an even bigger success than the last one. Yesterday's sale was large and had a good turnout. Thank you to everyone who volunteered their time to make sure that it was a success. They were able to make $1300 for my transplant fund! That is so wonderful!

This whole fundraising process have been so surreal. I cant believe that so many people lend a hand to help me. Which is why I need to get into transplant soon. Please pray for me that the cancer cells will stay under control...

TGIF?

So I may have pushed myself a little too much with all the activities today. There was another TV interview, a visit to the Cancer Care, and some work for the charity sale tomorrow. It doesnt seem much but its enough to wear me out. I feel dead beat tired and my whole entire back is aching.

This morning I did an interview for KWTV Channel 9 News. It was a little more relaxed because I wasnt hooked up to an IV nor was it done at the Cancer Center. They came over to my house to ask me about my conditions, the charity garage sale, and how cancer impacted my life. I was still as bad in front of the camera as the first time, but I think this one went alot smoother. Im glad that they came today, any earlier during the week they would have gotten a mumbling Rina that would give incoherent answers because of the drugs and the sores. Good timing Channel 9 and awesome segment, I feel very priveleged and lucky that they are willing to run my story.

Then I went to the Cancer Center to do bloodwork to see how my body is doing. My result was mediocre. I am doing better but still not good. I was running a temperature (again!) and my WBC is still low, my RBC has improved as expected because of the transfusion yesterday, and my platelets are still low. A little dissapointed with the results because I might/might not receive more chemo on Monday. If I do, I cant imagine how angry my body will be towards me, I am dreading the days following the treatment. "Uggggh....." Hope my body will suck it up and last through it. But more than likely it will be delayed if things dont look up this weekend with my blood counts and overall condition. I hate delays because I don't want to give the cancer a breather, which means a chance for it to start growing again. I can't let that happen. I have been fortunate that I have never had a treatment delayed and I really would hate to start now.

I am nervous for Monday. I hope Dr P will have something positive to tell me. He is a wonderful doctor, he is tough with the treatment because he knows that I can handle it. Though I hope that this tough treatment wouldnt last too long, I have to get to transplant soon. I have never wanted something so bad. I pray everyday that the bone marrow transplant will be the end of the chapter for this phase in my life. I believe that Dr P and Dr H will try their darndest to get me there.

Now my mini mission will begin. I must take care of my self this weekend and hopefully with the help of God I can continue to improve my overall condition. Whether or not Dr P will give me chemo on Monday, I need to show him that I can handle anything that he throws at me. I really dont want him to be hesitant about any treatment options simply because he is concerned whether or not I am physically fit for it.

Wow! I am more nervous about Monday than I realized. I will know the future treatment plans from Dr P on Monday. I guess I have the right to be nervous. But I shouldnt be nervous. I dont know, stressing isn't going to help im sure.

That came out of nowhere....

I knew that it was too good to be true for me to be feeling that well. Sunday the nasty side effects started to kick in. I got a bacterial infection and a fungal infection which resulted in nasty painful sores in my mouth and down my throat. I finally got over the fever and the nausea but I havent been able to eat since Saturday, just the occasional Ensure. Because of my extremely low blood counts the infections and the sores have not healed quick enough. Had a blood transfusion today (that was a mess with its own story later) and im hoping that it will help me feel better quickly within the next few days.

I miss eating. :(

What an amazing day....

Where do I begin? How should I start this entry? I really dont know...there were so many great, amazing things that happened on Friday.

I woke up at around nine to a phone call from a woman name Lisa. She told that she's from Fox News and that she would like to do a news segment on me and the Fishing Tournament. She has asked to meet with me at the Cancer Care at eleven to do the story. So I dressed myself up in my favorite pink blouse and my favorite white scarf and out the door I go! I walked into the treatment and there were a camera in my face and everyone was smiling at me too. It was strange, I felt weird in my own body, talk about being a professional. I felt like a cheeseball who acted like she never saw a camera before. Lisa, the reporter and her cameraman were very friendly people they helped me to get the jitters out and told me that I dont need to be nervous. I like them! They recorded while I get my PICC flushed and hooked to the IV by Linda (one of the many lovable CC nurses!) and she also gave me some lemon drops to help me with my cough so im not just coughing the whole interview. Lisa asked me alot of questions, I tried to answer them the best of my ability. The interview went smoothly and they asked me to keep them updated with any new news before they left. I felt like a star! (or THAT GIRL who would wave awkwardly at the camera on tv shows shouting out "hi mom! dad! im on tv!" over and over in between giggling fits)

Then the main attraction began when the camera was off. I was given a big bag of fluids to prepare my kidney for the big gun. An hour later, I was finally given my yellow bag of Methotrexate. I asked the nurse, "why do they make the colors of chemo look like koolaid? EPOCH looked like orange koolaid and now Metho-goodness looked like pinneaple." Then I would begin to imagine the koolaid man bust through the walls of the cancer care treatment room shouting out "oooh yeah!" like he does in the commercials. That would be sweet. Rhonda (the nurse) laughed at my comment and said "I dont know, to make them cheery...but we both know the truth though, don't we?" Oh yes, I know the truth all too well. After an hour or so of that I had another fluid bag and the whole process was over. I went to little girls room alot throughout the treatment which the nurses sees it as a good sign while my bladder was crying for some rest. But best of all my cough was kept to a minimum and my breathing went to normal! No more ragged or ratty loud breathing. I went home happy cause I got to go home without a coughing fit and also knowing that I would be able to the benefit concert that night.

I got dressed up for the concert although it wasnt necessary. Being sick often doesnt really give you a chance to be out and about, so you stay home and sweats would turn into your best friend. Plus when you feel like crap picking out an outfit is the last thing that you want to worry about. I'm sure many cancer patients can relate to this. So tonight, im going to a concert and I feel well and gosh darn it! im going to get dolled up for it.

The benefit concert was nothing short of being amazing. Louise did such a fine job of putting all of it together.I was floored with the performers, the choir were wonderful, the orchestra was beautiful and the culture performances they were just spectacular. I cant believe that all of these people did this just to raise money for my transplant. I was floored and speechless, felt like my heart got so big that it took up my whole entire body. The auction items from all over the world was just so beautiful and intricate. People were just stunned at how beautiful the items were and bidding wars began. I estimated that there were about 175 audience members for a concert that was only put together probably about two weeks ago. Stunning concert, beautiful performances, 100% of all the concert tix revenue and auction sales will go toward my BMT. I was just teary eyed and felt like the luckiest girl in the world! I am so blessed to be surrounded by so many kind and caring people.

I cant sleep right now, but I really should go back to bed. Today is the fishing tournament and I really want to go, except Methotrexate aka "pinneaple" will make me be sensitive to the sun. So I might not be able to stay the whole entire time. *sadness* But I want to visit.

Oh yeah, before I forget......guess whose shoulder doesn't hurt anymore.......ME, ME, ME. After a week of pain and numbness, I no longer suffer from it and I was able to feel my left collar bone for the very first time in weeks. Its wonderful and it wouldnt have been possible without the prayers of many. So thank you and do wish me luck that the cancer will stay that way. :D


xoxo from the happiest girl in the world,
rina

A much better day...

I am happy to say that today I am feeling much better. Monday's chemo finally did what its supposed to do with making feel like complete utter crap, but at the same time it has provided me with some relief with the tumor on my left shoulder. Although the swelling and the pain hasn't completely dissapeared, but at least I was able to fall asleep last night without the help of any painkillers (just some wonderful hot oolong tea!).

My cough is still bothersome but thats also getting better. Every time the swelling goes down I find myself to be in better shape than the day before. Its the best feeling in the world knowing that my body is fighting one hell of a fight against this "intruders" aka cancer cells. Which is why that I am excited for the chemo treatment tomorrow. I do realize that chemo side effects are horrible, but its small price that im willing to pay to get myself better. I know that my body is a bit tattered from all the chemo, but as long as im still breathing, conscious and walking, I am able to handle any chemo and should be grateful that I still have options for treatment.

There are many people out there --old and young --that no longer have the chance to get better. Its unfair because everyone deserves to win their fight against cancer. But I do realize that I have been lucky to still have this fight. I refuse to let this chance to slip by me and lose. I guess while sharing my body with the cancer for 19 months we begin to have things in common, which is stubbornness.

xoxo,
rina

So I found this picture yesterday and it made me so happy! It was my 9th birthday and I was celebrating at school in Indonesia, with my teacher and classmates. I felt like a princess because during your birthday you were allowed to get out of uniform and wear your favorite dress and feel like belle of the ball! :)

Bring on the big guns...

I have been feeling under the weather the past couple of days. For the past two nights I could not sleep at night because of back pains or upset stomach and sometime even chills. I couldn't get the house to be at a temperature that I wanted, it was either too cold or too warm. I have been sleeping the day away because I couldnt sleep at night. It's quite frusturating.

I had chemo today, the nurses were concerned because I looked flush and the fact that I had a low grade fever. Also the fact that my left shoulder is swollen because the tumors decided over the weekend that they would grow out of control, which is probably why I am having joint pains and horrible cough. I am glad that they decided to go ahead with the chemo.

I was bummed out when I found out that my appointments for my lung and heart was cancelled today. There seems to be a difference in plan of treatment with Dr P and Dr H in OKC. So I think I will meet with Dr H sometime this week before continuing on with tests and whatnot while still doing Dr P chemo regimen.

I am nervous about Friday. Dr P will be adding a new chemo to my treatment plan. Its called Methotrexate with Velacour rescue. I have heard that the drug is so intense with its toxicity that it might just be one classification away from the high dose chemo. Without the Velacour rescue, the side effects may be fatal as it will come close to eliminating my bone marrow (immune system). scary! Hopefully everything will run smoothly and the Methotrexate will do its job in slowing the growth of the cancer cells with minimal side effects. I seriously dont know how much my body can handle all of this. It just feels like the chemo doses gets higher and higher.

I just thought I would give an update. Still feeling tired and achy and so im going to continue my nap now.

xoxo,
rina

Happy 4th (I guess)...

A few hours after my post last night, the alarm on my pump went off and it would not shut off! I have never been that frustrated with a piece of equipment in my entire life. The shrills from the alarm was driving me crazy. We called the 800 number on the side of the pump for troubleshooting and they were not very helpful, called the cancer care hotline but they were too busy playing hot potato with me. It seems as though that no one wanted to help me. So my mom and I decided to go to the ER to get this resolved because it had been an hour since my pump stopped working and I wasn't receiving my chemo.

Is it me or do people move in snail pace when there is a problem? I guess I was being impatient or maybe its the fact that I was there until 3 AM to get my pump working again and I was exhausted. By the time I got home I was tired, cold, and upset. I'm glad this morning was alot better. I was supposed to be at the cancer care at 1 PM to get my pump removed but because of the delay the night before, Anita (the nurse) and her family who was also there, my mom and I had to wait and twiddle our thumbs while we wait for the chemo to finish before Anita could remove it.

My throat is bothering me a little (I hope its not going to be a full-blown infection *again*) and this oklahoma heat is unbearable! I really cant stand this heat!! I am twenty one years old and I am going through hot flashes in this dry humid cruddy state. I am not feeling too happy today *sigh* I really hope tomorrow is better.

This could be the last of the EPOCH...

Today I went to the cancer center to get my last refill bag of the EPOCH treatment. The past few days have been a little rough on me, especially with the fatigue and dizziness because of the heat. I have been trying to make the house alot colder because of it. I am very grateful that my physical condition hasn't gotten worse that will require anymore medications.

I really do hope this shall be the last time I will have to carry the pump everywhere. I will be detached tomorrow, on 4th of july, how fitting since I will be celebrating my own independence from this "ball and chain."

Earlier this week, my breathing and coughing was a little raspy because of the tumors on top of my lung made breathing difficult. But I am happy to say that it's much better and I could sleep through the night and not wake up with the horrid coughing fit.

I am very optimisitic that the transplant will happen. Please continue to pray for me!

x0x0,

rina

The EPOCH reminds me alot like a tasty orange koolaid, except I dont think its "tasty" and I think it would be dangerous to drink it... they really shouldn't make it look that good!

The pump that delivers the drug to my veins, it makes a pumping noise every second, one would ask me if it gets pretty annoying having to listen to that noise for 96 hours. Yes, it does get annoying but like the noise of the fridge running after awhile you would get used to it.

I also wanted to say that I do read all of my emails and I am very thankful for all the encouragement that I have received. I also love all the notes, snail mail and the homemade cards....trust me, its just as great as my birthday! :D

So I guess it wasnt enough....

I did not receive the best of news on Monday during my doc visit. As some of you know, my left shoulder was hurting a bit over the weekend and my cough was a little bit worse also. Just like what I feared, Dr P was concerned that the cancer cell is starting to be resistant to the EPOCH drug. But because I have tried five different chemo combo, my chemo options are starting to be a little slim. So in order to keep the tumors from growing uncontrollably, instead of doing chemo every three weeks we're going to bump it up to doing chemo treatment every week. :(

I was a little bummed out about the news. Cried a little while still at the cancer center. I asked the nurse if I could have one of the private rooms so that people couldnt see me acting like a little girl crying. I know I have to be strong that despite having to do chemo every week now, I just have to take it "one day at a time."

Just like people said to me "GOD would not give you challenges more than you can handle." Wish me luck and pray for me that physically and emotionally everything will be fine....


xoxo,
rina

Happy Birthday Mom...

Today the greatest person in my life is celebrating her birthday. As much as my mom hates birthdays because it reminds her of her age I think birthdays are pretty cool and awesome. Out of the goodness of my heart I will not disclose her age. Since her 35th birthday, her age has been as much of a mystery as the existence of the lochness monster. LOVE YOU MOM! I think like wine you have aged gracefully. :D

Tomorrow will be the last (I hope!) EPOCH treatment that I will be getting. I have an appointment with Dr P and then off to the treatment room for my chemo. Wish me luck that everything will go smoothly!

xoxo,
rina

No rain is going to ruin my parade...

So today was the day of the garage sale. My mom being the dedicated person that she is started to set the thing up at around six thirty this morning. More help started to show up at around seven which is when I got up and "helped" out as well. I put the word help around a quotation mark because you could not really say that I helped out much because im such a weakling. blagh! So back to the sale, it was doing really well around morning time with alot of customers showing up and buying stuff.

Then there was a big damper at around ten. The sky started to pour cats and dogs. It was ridiculous but Cara came prepared she brought clear plastic bags to cover the items so it doesnt get wet. We waited for the sky to clear up which it finally did an hour or so later.

I was fortunate enough to have lunch with Dr Salim, he's a forestry professor here at Oklahoma State. Such a nice man and he reminds me so much like my uncle. During lunch he shared stories from all his world travels, which I hope to do one day. Go out and see the world! Experience ohther culturs and see what they have to offer out in this big world. Plus, its really sad that a man from Turkey can speak better Bahasa Indonesia than me.

I really thought that the rain would slow down the sales for the rest of the day, because although it stopped raining it was definitely cloudy. I would be happy if we were able to pull off $200, but the total of the day was ....(drumroll please..) EIGHT HUNDRED THIRTY SEVEN DOLLARS!!! whoot whoot! that my friend is what you would call a success story!

Ninety percent of the items that were being sold today were from donations. So thank you so much to those who donated, who helped me sort/priced the items, and those who were there today during the garage sale. This wouldnt have been possible without you! I really wanted to start naming names but im afraid that the music will cut my thank you speech off just like they do during the Oscars. hah! But in all seriousness you know who you are and I owe the success of todays sale to you, GOD bless you for your kind heart!

xoxo,

rina

PS: thought I share some pictures with all of you the beautiful men and women of the best frickin G Sale ever!

If Human Cloning Was Possible...

I havent been able to post the past couple of days because not only my cough has been so terrible that it tires me out but also because with the energy I have left, I have tried to help out with the garage sale process. It made me so happy to see that many people donated wonderful items for the sale. I feel like I could open up my own second hand shop with the immense amount of items that we have for the garage sale tomorrow. I'm feeling very optimistic with the sale tomorrow, I really don't see how anyone could pass up buying these wonderful items. They really are not junk, but simply treasures! treasures that will help me reach my transplant goal. :)

Even with help from wonderful people for the past couple of days, we're still not done setting up. But I know my mother and those who are helping her set up in the morning will make sure that the place will be up and running tomorrow morning. They are simply the most wonderful and kind people that you'll ever meet. I feel really blessed to have these kind of people in my life!
I wish I was more help, but this cough is unbereable. Especially with this heat, it definitely makes my cough alot worse! I hate it because it makes me feel useless. Maybe if there were five of me, it could equal one decent healthy person. Hah!

The "Cancer Schmancer Comedy Jam" was tonight. In fact, its going on right now. It really makes me sad that im not able to make it. But I really cant be there tonight and have the strength for tomorrow's sale. I would be too wiped out. Also the drive and with the 10 PM -1 AM time, its simply too much for my old weary body.

We just got done sorting and getting stuff ready just an hour ago. My mom needed to get some stuff for the lemonade/bake sale tomorrow from wal-mart. I thought I should give her some company and so I went with her. We just got home and my body is worn out. It's needing some hardcore sleep, but I thought I should update just to let everyone know that i'm doing alright. :)

xoxo,
rina

PS: If anyone is from around Stillwater...

Community Garage Sale --- 8 AM, Sat Morning!
1909 E Duke Ave.

Be there or be square! (that's where all the cool kids will be...) :p

le sigh...

I am feeling tired today and in need of some rest. Tomorrow I will write something more than just this.

Good night.

Viva la Vida...

I love healthy days and being productive! I slept like a baby last night. My night was not interrupted by my coughs and felt wonderful this morning. Seriously, healthy days they are wonderful and I am thankful that im feeling better every day.

I was able to help my mom sort out the stuff for the garage sale today. We created piles for women, men, and children clothing and things that needed to be hung during the garage sale. I must say that we did a pretty awesome job in sorting. Regina dropped off three tubs of stuff, but they were not just "stuff" though. Some of those were things that you wouldn't find around here, they were stuff from all over the world. She is a wonderful woman not just for donating all of these stuff but also for being very helpful with the whole fundraising process.

Sarah, a friend of mine, also dropped off some of her stuff. She is in the process of moving and decided to donate the things that she no longer needs to the garage sale. But she also brought a little something else for me. A copy of the new Coldplay cd! Lets just say that made me really really happy. I have been so busy with the treatment, being sick and the fundraising that I have not had the chance to get the new copy of Coldplay. I am such a fan of the band and I definitely recommend the CD to everyone.

My friend and former roomate, Nicole, will also be featured on the Tulsa Channel 8 morning news this Thursday for the benefit show she is hosting for me. It's called the "Cancer Schmancer Comedy Jam" and all the money will go towards my transplant. I am so happy that she will be on TV and quite flattered and thankful that she is putting all of this together to help me out.

Right now im typing while Coldplay is playing on repeat and surrounded by stuff that we're selling for the garage sale. I am really looking forward to Saturday, there sure are alot of stuff that will be sold and all we need now is just a big turnout. I am a pretty optimistic person and I think this will be a successful garage sale!

I hope everyone is having a lovely 'coldplay' evening! ;)

xoxo,
rina

Oh Monday...

Today I went to the cancer center to do my weekly dressing change for my PICC. I am glad that they still work great through all those chemo, blood draws, and even through my clumsiness that resulted in breaking the line twice! I cant believe how long the line used to be (in the picture) that its gotta be about 20 in, now its barely about 5 in. out of my arm. I really would take a picture of how it looks right now but I am already in bed as im writing this. Maybe some other day I will.

Dr P came by to feel the tumor in my neck, he really didnt say much about it, but from the looks of it he seemed pleased. Barbara (the head nurse) complimented my picture and said that I looked really cute in the paper's article that was published over the weekend. It was pretty uneventful day in rina's cancer world today.

So later on the afternoon I decided to help my mom out with a little laundry, those little buggers sure do know how to pile themselves up. My mom has been so busy with my me and medical appointments, the fundraising, and everything in between. I really do feel bad that she has not been able to catch a break, so I thought it would be nice to help her out with that. It wasnt much of anything, but its the best that I could do.

Cara came by this afternoon and brought me strawberry milkshake. It's one of the things I love these days especially on those days when I couldnt hold down my food or when the sores are just unbereable.....milkshakes always make me happy.

xoxo,
Rina

A persons trash is someone else's treasure...

Slowly but surely I have been feeling better. With each night's rest my body is rejuvenated and aches are starting to disappear, fevers are no longer a problem, and if it werent for this cough still being here I would begin to feel like myself again.

But I have predicted all of this. I would usually feel bad about the fourth and last day of chemo and would continue on a downhill slope through the week after. Then towards the end of that week I would start to feel healthier and would continue to climb up for a week before the whole process of chemo would begin again. So basically, Dr P would like to give chemo whenever my numbers and my health is good enough for those evil toxins. I know he means well, but I wish I have more than just one week of feeling healthy. But I shouldnt complain, I would be in pain 24/7 because of those pesky tumors if it werent for Dr P's treatment plan. You start to learn how to give and take.

I am really looking forward to the transplant. With the high dose chemo it would blast those pesky tumors out of here! As far away from me as possible! With it comes freedom. I will then be able to have healthy days lasting longer than a week. Everyday I pray that everything will work out and that I will have my transplant procedure done during this window of opportunity. I cannot let this slip by me, I really cant. Sometime I dont know how im supposed to feel, relieved that the transplant is in three weeks which means that I am THAT much closer to a cure or worried that three weeks is not enough time to come up with that large sum of money. I dont know. I really dont.

Anyways....

I know that I cant just cry about my problems and expect them to go away without doing anything about it. So if all goes to plan, I should be feeling much better this week. Which means that I should be able to be more active in helping out my mom and everyone involved in getting the community garage sale going. Which I hope we will have lots to sell and lots of people coming out to the GS.

I hope everyone is having a sunny sunday! :)


xoxo,
rina

More to life than cancer...

We cancer patients can be self-absorbed and single-minded. Death looming over our heads can really take over our lives. We count on you, our family and friends, not to let it.

I've had friends talk to me about their everyday problems with their parents, significant others, coworkers, and then they stop themselves and say, "I shouldn't be complaining about this stuff! This is nothing compared to what you're going through!"

Or they're chit-chatting along about themselves and then suddenly realize they have a dying cancer patient in front of them. "Listen to me going on about this silly stuff! Tell me about you. How do you feel? How's the treatment going? Let's talk about you."

I know there are some cancer patients who want to talk about nothing else or think that whatever anyone else has to say isn't as important as what they, as cancer patients, have to say. But I'm sure they're the minority. And if it weren't cancer, it might be something else that makes their troubles more important than anybody else's. But most cancer patients, including myself, want to hear about what's happening outside of Cancer World.

A bad break-up with a boyfriend might sound trivial compared to a life-and-death struggle with cancer, but we human beings feel what we feel. If the break-up is what's consuming you and keeping you up at night, let's talk about that. It's probably a lot more interesting than the details of my latest test results anyway.

It's true - I could live, eat, and breathe cancer 24/7 if I let myself. Cancer can be as big or as little as I let it be. When I spend an entire day at the hospital getting tests and treatments, cancer takes over the day. But even then, I don't sit waiting for my echocardiogram thinking about cancer. I'm usually thinking about the same mundane things everyone else thinks about while waiting in line at the bank or supermarket.

Yes, cancer is right up there on the list of things worth complaining about. Yes, it probably trumps a family squabble or a bad hair day in terms of seriousness. But that doesn't mean other problems aren't important. Think of it this way. If you want to complain to me about the horrible haircut you have to live with after spending four hours and a week's salary at the hairdresser's, I can comfort myself with the thought that at least I don't have to worry about silly things like haircuts anymore.