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