Tuesday, May 29, 2012

There goes lucky.

So it has been awhile since I wrote here and quite a bit has happened since then.  Use my friend google to look up any terminology I use here.  I had a PET/CT scan around February and my spleen lit up like a Christmas tree. So on to my 5th surgery, a splenectomy,  so that it  can be biopsied.  "You have cancer." is a terrifying sentence to hear from your doctor. "Your cancer is back" is even worse. It's heart breaking. It pisses you off.   It really pisses you off.  There is no known cause for this disease my oncologist has told me.   I know the cause, it's called shitty luck. 
So now into the second line of treatment. A bone marrow/stem cell transplant.   I had 2 rounds of salvage chemo called RICE.  Each letter is a name of a chemo drug not because I am Asian and we eat rice.   Each round I was admitted into the hospital to received chemo which started on a Friday and ended on Monday.   This was chemo for 3-4 days straight.  My treatment of RCHOP, first line treatment, was only one day for 6 rounds. RICE made me more nauseous.   I made a rule to myself about going to work. When I was doing RCHOP, my rule would be:

if I feel like crap - go to work. 
if I feel like shit - best to stay home

On RICE, knowing that I will be having a stem cell transplant which will require me to be in the hospital for 3-4 weeks and another couple/few weeks at home, I have to use my vacation and sick days sparingly. My rule:

If I feel like shit - go to work
If I feel like death is better - tell Ana or my mom to leave work and be my nurse. 

I have always wondered why some cancer patients say they've had enough treatment and want to call it quits. Wouldn't they want to continue fighting.   Now I know why.  RICE treatment was the first time I had felt like that.  The side effects of chemo is just terrible. If I had worst enemies, I would not wish this on them.   I would throw up before work, during work, and when I would get back home.  Just imagine the morning after a night of heavy drinking and you spin yourself around, that's the feeling of chemo induced nausea. People tell me I'm strong to be going through this and still go to work. I'm not strong, I just don't have a choice. Work keeps me busy and sane where I don't think about the worst outcome. That's at night before I go to bed or wake up in the middle of the night and can't go back to bed. I close my eyes and I picture myself in a coffin. It's pretty weird and dark when I see myself in a suit and sometimes in a braves jersey with my arms folded on my chest. 

So to prepare for a stem cell transplant I have been going to the hospital almost everyday, even on weekends.  I had my 6th surgery, on a Wednesday,  to install my triple Neostar  port on my left breast to go along with my double lumen port on my right breast. The way I think about it, since I work in IT,   I'm like a computer with 5 USB ports you can connect devices to. Complications to this surgery was less than 1%.  This should have been a "wham bam thank you ma'am" type of surgery.  Since I have shitty luck, hello 1%. X-rays taken after the surgery showed I had a pneumothorax. So instead of going home to relax and get ready for mobilization chemo the next 2 days, I get admitted to the hospital. What a frustrating day. This surgery was scheduled for 10am. I wasn't in the operating room till 5:30pm so I've had nothing to eat or drink since the night before.  The next morning another x-ray was taken and the pneumothorax healed it self and I was given the go ahead to receive chemo that day. 

So I had two days of chemo and daily shots of neupogen to get my bone marrow to make millions of stem cells and release them into the bloodstream. This was done so that a machine can collect my stem cells and be used on June 13, the day of my transplant.  The neupogen shots must have really work. Normal range for white blood count is between 4-10. My white count was at 95.  This caused me to be in a ton of bone pain but my stem cell collection was a success since my oncologist wanted at least 4 million stem cells and we were able to get 11 million. 

I still have to go to the hospital to flush/clean my Neostar line but it's only an inconvenience  since I have to drive to downtown Baylor and then drive to work afterwards. But until June 5, the day I get admitted, that is all I need to do medically. 

Quite a few people has asked me if I am scared knowing that I am fixing to have a stem cell transplant. My answer is, not yet. June 4th maybe another answer. 

Machine that separates my stem cells from my blood.

My stem cells to be transplanted back into me after high dosage chemo.  This will be use to rescue my immune system.

Tuesday, November 29, 2011

The Result

Hope you never have to sit in a doctors office waiting for a biopsy result because its  very scary.  The doctor was running an hour and a half behind schedule which made it worse.   I'm sitting there in the exam room looking anxiously at the door to open. Tick tock  tick tock. Door finally opens and the doctor tells me that they found no cancer cells on the tissue that lit up pretty hot on my Petscan. So now I have had 2 biopsies, one on the L1 vertebrae and one on the S1 which both were negative. Maybe I should call Gregory House for a diagnoses. I hear he is pretty good. A biopsy with no cancer is always good news and I take this victory with a couple of beers at a Mexican restaurant with Ana, Eric, and Chris Montoya.  So what's the next plan of action?  I will probably meet with my oncologist sometime this week or next. They may monitor me with another Petscan in a few months and compare  it to the one I just had. Today, this road led to victory and hopefully I will win this war. 

Monday, November 28, 2011

The waiting game

Hope everybody had a good Thanksgiving.  Mine was great and had 4 plate servings of food.  I don't get to eat like that much often since neither Ana or myself cook very much.  It's almost been 2 weeks since I had an operation on my Sacrum and I figured they were not going to call me for results last week during Thanksgiving.  Can you imagine if you were the person who has to tell a patient that they have cancer right before Thanksgiving.  I would'nt want to be the one to do it. I called the doctor's office who did my surgery first thing this Monday morning to see if they have the results of my biopsy.  They want me to come in on my scheduled post-op appointment on Tuesday to tell me the results of the biopsy.  That's another day I get to wait and not know anything which is the hardest part. When I started my testing for a diagnoses at the very beginning of all this, the doctors office called and told me that I needed to bring family members in for this appointment.  My appointment wasnt until 4pm when they called me at 10am to tell me this.  The result could not be good because why else are they telling me to bring family.  My knees felt weak, I coudnt think clearly, and there was no way I was going to sit at my desk to work.  So my co-workers drove me home since I was drunk off anxiety and could not safely drive home. Now I sit here again waiting for a biopsy result because they don't want to tell me over the phone.  This maybe procedural that they don't tell results over the phone or they want to tell me "You have cancer" in person.  When those words came from the doctor's mouth at the begining of this road, all I could do was cry.  How could this be?  I was in excellent shape.  Other than drinking beer once in a while or have an occasional slice or two of pizza, I was more fit than I was in college. I didnt even know much about Non-Hodkins Lymphoma, and now I'm trying to kill it before it kills me.  Now I have to go through this again, possibly hearing the doctor say. " You have cancer again".  I'm not going to lie, I am getting worn down by all of this.  Going to work keeps me busy and I do like what I do most of the time but being at work when going through chemo treatments is not something fun.  It hard to keep performance at a good level while felling like you have a flu but I try.   Sometimes I wish I was all by myself so that I can just die and no one would care and be hurt that I died.  That would be to easy and selfish.  Fortunately, I have Ana, my family, friends, co-workers, and of course Hanson and most importantly myself that I have to fight for and beat this shit.   Anxiety is going to be  high, thank God I have a bottle of lorazepam. 

Sunday, November 20, 2011

Clucks, oinks, or moos

Its Sunday night...what a gloomy day we had here in the DFW area. I wanted to do something that didn't require much movement. Besides sleeping, I couldn't think of much. I played Modern Warfare 3 and those 10 year old gamers kick my butt. They are so good because that's all they do nowadays. Go grab a football and start a game with your neighborhood kids.... I wanted to be moving a little more since I am getting better and have been stuck at the apartment since I was discharged on Thursday. Atleast Friday night I was able to go to a restaurant for dinner with Ana, and two of the Montoya brothers, Chris and Eric. We went to Mi Cocina and for you non Spanish speaking folks it means my kitchen. The Mi Cocina at Legacy in Plano is a two story restaurant with no elevator access...just stairs. You wanna take a guess where they sat us? If you guessed the second floor, you could be a psychic. As I struggled to take the stairs, the waiter ask if we preferred to be seated on the first floor. I was already half way up. No sense to let my arch nemeses, the stairs, beat me. We ate 7 bowls of chips before we got the meals we ordered. I got "Tacos de Brisket". It means brisket tacos. The Spanish 1 and 2 class I took in high school is really paying off with these translations. Tacos were pretty good but I prefer those hole in the wall Mexicans restaurants. Food is more authentic and they are much cheaper. Try the lengua(cow tongue) tacos. It sounds gross but they are very good and you can't get those at On the Border. Just like today, Ana's mom brought us barbacoa which is cows head. Yum. If it clucks, oinks, or moos I will eat it. Other than going out to eat on friday, I pretty much was a hermit. Now I have to hope that I am physically ready for work tommorrow. I'm not sure which would be more painful; sitting on a chair all day or catching up on email. Oh by the way....Miralax....that stuff works!! 2 Vicodins tonight and Miralax in the morning. Happy Sunday Funday.

Friday, November 18, 2011

The Bieber fever

Last night I was battling a fever. I  was sleeping and the next thing you know I was waking up with chills and a fever.  My thermometer is pretty crappy because I would take my temperature and it would say 101.9. Then a few seconds later it would be 100. I really need to get the one that you just swipe on your forehead. More expensive but a lot more accurate. Anyways. I was pretty scared because the chills and fever is what started this whole lymphoma mess. I would suffer for hours shaking and trying to get the fever down and this would happen multiple times throughout the day. The side effects of chemo felt like heaven compared to chills and the fevers. I was thinking "crap. Not this again".   Ana called the hotline last night to report my fever. The nurse stated that I need to do my breathing exercise. Crap.... I totally forgot to bring the breathing exercise device I would use every 30 minutes when I was recovering from surgery.   Since all I have done is lay around and breathing softly, the bottom of my lungs wouldn't inflate and particles would gather. To counter act this, I needed to use that device. I haven't done a breathing exercise in hours. My murse told me I needed to do this or I will get a fever. Damn, he was right. I started doing the breathing exercise manually and took 3 Vicodins in a span of 4 hours of course. At 2:43 am my crappy thermometer said I was at 99. Poor Ana, every time I need to use the restroom, I had to wake her up so she can help me out of bed. She woke up 4 times last night for pee time and "more Vicodin please!". She has been great through all this.

Today, I am still in a lot of pain. I've been laying in bed all day but this time doing my breathing exercise. I would only get up to pee. Oh, and that reminds me...with all the pain medicines I have been taking....(TO MUCH INFO ALERT!!!!!) I haven't gone number 2 since Tuesday. There must be a massive build up. I better get some Miralax. That works like a champ since I've used it before when taking pain meds for my other biopsy. So far here is what has been done:
CT scan-2x

Thank you BCBS.

Oh I forgot to tell you guys I have to wear these socks that look like stockings called a TED hose for 4 weeks. It's like socks but it goes all the way to my thighs. It's supposed to prevent blood clots. it's pretty comfortable but it makes me itch. Or maybe I haven't showered since Wednesday that's making me itch. Let's just blame the TED hose.

Thursday, November 17, 2011

More pain meds please!!

I woke up around 4:30 am today because I was in pain and had to pee. I woke up Ana to get my urinal. I can get used to this not having to get up and going to the bathroom. I may take that urinal home!! I called my murse(man nurse) for some pain meds and gave me xxxx through an IV. It felt weird going in(that's what she said) and it help but it didn't last that long. About an hour later I was calling my murse again. This time I want Vicodin. Now that helped! I hardly had any sleep at all due to the pain, my IV device alarming twice and the murse checking on me and taking temperature and blood pressure.
For being a hospital. There breakfast wasn't to bad. I had scrambled eggs, bacon, Hashbrown and pancakes. Ya I know your thinking..."damn fat boy hungry", but the servings was pretty small. Knowing what hospitals charge. That was probably a $50 breakfast.
The physical therapist or terrorist...pick your poison..had me get out of bed to walk around. GET OUT OF BED??!!!?? I could barely move around in bed without screaming. If I want to go home today I better show her I can move around. The pain of getting out of bed was terrible but I did it. She tied a rope around me just in case I started falling. I felt like I was 90 years old walking around the floor. I got a little dizzy but was able to accomplish what she needed to see. As long as my blood drainage isn't to much then they will discharge me. I am hoping so because I don't want to spend another night at the hospital without my Hanson. No matter how bad I feel, Hanson always makes me better. Just as I am typing, vicodene? Yes, please!!

Wednesday, November 16, 2011

Cancer is an Ass

It was 11:40 am when I began to get ready for my surgery. I got a phone call from Baylor and they asked me if I was enroute to the hospital. I replied, "no" and the asked "why?" they informed me that I was scheduled for surgery at 11:15am. That's not what I was told and what the paperwork states. So me and Ana hurried and got our stuff together. Got to Baylor Uptown pretty fast. Nice hospital. They got me in and prepped pretty fast. Talked to my anesthealogist and said he was giving me the good drugs. Not the Walmart type of drugs but the Target type. If I was going to get cut open, the drugs are the best part. To bad it's down hill from there. Next thing you know I'm waking up not knowing where I was at and my back is hurting. They had to cut me open and biopsy the S1 vertebrae. The sacrum....it's right near where the butt crack starts. Cancer is an ass!!
So I'm laying down in my room with my brother, mom, and Ana. Finally getting to eat around 8:45 pm. I haven't had any food since 11pm the night before. You know this fat boy is hungry!!!
I didnt realize that I couldnt walk and I need to go use the restroom. So the man nurse gave me a urinal and I asked Ana how I am supposed to use this. She refused. Everyone left the room except my brother. I couldnt pee. I know it wasn't stage frieght. It had to be the way I was laying in bed. So I had Chris make my bed go all the way up as if I was sitting. Still no drop. So we tried laying the bed all the way down. I got Chris to google what muscle helps you pee. I was getting desperate. 15 minutes later I had a successful urination. Chris had to get the urinal and empty it. What a good brother. This is the first time I have ever spent the night at a hospital. Whatever it takes. Murse just gave me some pain meds. Supposed to make me sleepy. Signing off..