Every Week it's Something New....Let's Change That!

Last Wednesday, Nurse Paula came to visit me as usual and to drain my pleural cavity.  Everything was going fine and she had no problem getting a liter of fluid out of me.  It did alarm me to see that my pleural juice was a red color.  It reminded me of Washington apples.  That morning, I had woken up with a minor cough and I thought nothing of it.  I just reminded anyone that was planning on visiting me to make sure they were healthy with no illnesses like the flu since my immune system is low and I can't afford to get sick.  After Paula was done draining me, I started to cough. This is normal, as the lung is expanding back into its place.  I was just coughing up clear phlegm over and over.  I couldn't stop it.  I kept holding onto my chest as if I was going to cough up my lungs.  When things seemed to quiet down, Paula had me take an Ativan and I laid back in my bed and tried to meditate to calm myself down.  With it being Wednesday, Dr. R was not in the office so Nurse Paula left a message with NP Kelly about her concern with my cough.  It really wasn't a pretty view.

My red pleural juice.

Nurse Paula packed her things up and I went to sleep since the Ativan has that affect on me.  Later on, NP Kelly called me back and set up an appointment to see her the following day and also to go to radiology and have a chest x-ray done.  I was feeling weak from coughing so much.  I have no energy as is and my appetite was now non existent.  My mom and my sister would try to get me to eat but I just had no desire.  I gotta tell you, it's quite annoying being told to eat something because you need energy when you have no appetite and the thought of food is repulsing.  The only thing that I could manage to eat were popsicles and my Ensure Enlive juices.  I was also feeling short of breath so I had to turn my oxygen machine back on and wear that.  I noticed that I would get up and go to the bathroom and by the time I came back to bed I was huffing and puffing, craving my oxygen mask.  I checked my numbers on my oximeter and it was well in the 80's.  The oxygen also calms me down and I can feel my resting heart rate lowering.

Sleeping with my oxygen.

The next day, I had to take a shower and get ready for my appointment.  A year ago, I took a shower every day.  Today, I'm the girl who showers 2-3 times a week.  It's not easy anymore.  I have to cover my midline with my handy garbage bag apparatus that has bungie cords on it, I have to cover my catheter dressing with a sheet of Press 'n Seal and lastly, I'm short of breath!!!  My shower has been modified so I have the removable shower head, I had safety bars added to the shower walls, and I have a nice little shower seat.  I try to make my showers quick so I can get back on my oxygen.  My mom has to help me pick my clothes out, just like back in 1st grade.  Ok, not exactly like that but she has to open my dresser drawers for me and find what clothes I want to wear.  I can't bend over without coughing and feeling pressure in my lungs so anything that require bending I ask someone else to do for me.  I dress in some comfortable sweats and we head on out to Kaiser South San Francisco.  This time, we activate my portable oxygen tanks and I hook up to them.  Getting down my two flights of stairs to get out of my apartment building was a chore, but I made it.  I sat in the back of the car with with oxygen and relaxed during the car ride in. 

Waiting in radiology with my cane and tank.

Walking down the hall to the x-ray room. 

My sister checked me in to radiology and I waited for my name to be called, which took about 20 minutes.  My sister came to the dressing room with me as I was not used to walking with a cane and now my portable oxygen tank.  She helped me change into the gown and then the lab tech took me back to the x-ray room.  He gave me some funky little stickers to place on my nipples, which was a new thing they had started.  Apparently this helps because sometimes nipples get mistaken for nodules.  The procedure took about two minutes and then I changed and headed over to the lab.  NP Kelly wanted to make sure I wasn't anemic.  I dread getting poked with needles.  I am not kidding or being cute when I say I am a hard stick.  Not even a super tech who is awesome at needle poking has been able to poke me on the first try.  There have been a couple recently but my veins have just been killed by the chemotherapy.  The tech puts the tourniquet on my arm and gives me a stab.  She gets blood but it's going to slow so she tells me she has to stop and start over.  Ugh!!!  It always hurts when the needle goes in.  She goes in for another poke and get its.  Again, the needle stick itself hurts but I'm just happy she got blood. 

Nifty nipple stickers from radiology.

Cringing as I'm about to get my blood drawn. 

After it's all over, we head on over to the Orchid Center for my appointment with NP Kelly.  I'm called back, get my vitals taken, and wait.  NP Kelly comes in and shakes my hand.  I really like her.  She is so nice.  She goes over my x-ray with me and there's nothing significant about it.  It does show the pleural effusion which we know about (which is why I get drained 3x a week) and also some congestion.  That's probably why I've been coughing up clear stuff.  I ask her why my pleural juice has been coming out red and show her a picture of it.  She tells me that it can happen because I am on blood thinners and also because it's possible that there is a malignancy in there.  Malignancy means cancer.  It's ok.  My body is full of cancer.  What's a little cancer in my lungs now? My sister tells NP Kelly how I haven't been eating so she asks if I can get fluids.  Great.  This means I'm going to be stuck at Kaiser for a while now.  Kelly agrees and we head on over to the infusion center where Cynthia turns off my oxygen tank and hooks me up to theirs.  She gives me fluid over a period of an hour and a half and also does my dressing change on my midline.  It's been a long day at Kaiser and I'm ready to go home.

Bundled up as I get fluids. 

On Saturday, Nurse Nancy comes and drains my pleural cavity.  She is another great nurse.  We always have a lot of fun sharing and talking.  The pleural juice she drained is also a red color.  I wonder if it will ever go back to being the amber beer color it used to be.

Interestingly, the blood settles at the bottom of an older bottle, revealing the amber color fluid.

Fun times with Nurse Nancy.

I've come to accept that I'm on oxygen 24/7 now.  In my head, this is just cancer taking another part of my functioning body and destroying it.  I don't know if I'll ever be able to breathe on my own and no one can answer that for me.  Going into this battle, I knew there was no cure for me and that my objective was to buy as much time as I possibly could.  I wanted to be one of those people to make it five years out, breaking statistics.  Now that I'm 8 months into my journey, things have progressed so fast thanks to this sneaky bastard that it's hard for me to hold onto hope sometimes.  I've given up on the idea that I'll be here in 5 years.  Not all stage IV cancers are created equal.  Some stage IV cancers are curable.  Some progress very slow.  Some are rare cancers.  I want to get the periwinkle ribbon out there.  We all know what the pink ribbon is.  Unfortunately stomach cancer is usually caught in stage IV when the symptoms present themselves and it's too late.  This is just unacceptable to me.  

According to No Stomach For Cancer:

"Stomach cancers are the FOURTH most common cancer types worldwide, and the SECOND leading causes of cancer death in the world. The American Cancer Society estimates 1 million new cases in the world each year, and more than 800,000 deaths annually. Last year alone, it was estimated that more than 10,000 Americans would die from stomach cancer. 1 in 114 men and women are at a lifetime risk of this deadly disease!"

We've got to change this.  We need to educate ourselves on early detection and what the symptoms are.    We have to find a cure.  Too many newly diagnosed patients are told how much time they have with there loved ones.  That's what happened to me.  I don't know why I got stomach cancer.  But I've fought like hell, putting my body through the wringer, my mind through a roller coaster of emotions, just to be able to buy time and spend it with my family and friends.  I never imagined that I would die at 31.  No husband (not even a boyfriend), no kids...my life was barely beginning.  That's the reality I have to accept.  This happens to thousands of people out there and it has to change.  That is why I encourage everyone to poke around a website dear to me and see what you can do for November, which is Stomach Cancer Awareness Month.

No Stomach For Cancer

How to Survive Taxol...and Chemo #10

This past Friday I had chemo #10, which was another round of Taxol.  Thursday I had done pre chemo blood work and my lovely friend Mariya had taken me to go get this done.  I appreciate her so much.  She has really been there for me through this journey not only as a friend but as a support.   You don't meet too many people with a heart like hers anymore.  I'll always be grateful for her.  Later that afternoon, I met with Dr. R and I decided to wear my blue wig to my appointment.  I was too shy to show off my bald head and I was feeling a bit bold so I went with the dramatic wig.  I figure people would stare at me because of my bald head but now I was really going to give them something to stare at.  I got a few shout outs at the hospital as I walked around and I honestly didn't care at the looks people gave me.  For this appointment, I went in alone because there were some personal questions I wanted to ask Dr. R and I wanted to keep them between us, otherwise I would have let my sister join us.  Overall, I'm doing well and was able to proceed with another round of Taxol if I wanted to.  I said I would keep fighting so I was on board.

With my blue wig.

I haven't decided if Taxol is a worse recovery than my first regimen, ECX.  The thing about Taxol is that it seems fine and dandy the first two days then all of a sudden the side effects creep up and I'm feeling like death.  My body starts to swell up and feel stiff, and I feel like I'm on my death bed.  With ECX, I hated the daily nausea and vomiting that would make me cry because I felt so weak.  I never knew when it was coming on and it was so unpredictable, I hated it.   On Friday, I walked into the infusion center with my parents and Gail was my nurse.  I really like her.  She is so genuinely sweet and caring.  She's also very experienced and is always giving me great advice.  I tried to nap during my infusion as I had taken an Ativan earlier.  Nurse Gail also changed the dressing to my midline.  I felt bad for my parents who wanted to sit there with me the 3-4 hours so I had them go fetch me an iced coffee at the cafe to give them something to do. To the infusion, I wore a knit hat because I wanted to show the nurses my new hair do and I just wanted to sit there bald where it was completely normal.

Getting my Taxol like a champ.

My oldest brother arrived in town to visit for the weekend.  Let me add that this is the brother who said he would shave his mustache off and he hasn't!  So let's all pressure him to keep up his side of the bargain.  Saturday I played it easy and just stayed in bed mostly.  By Sunday, my appetite was doing well and I ate lots of tacos.  I spent some time in the living room and I started to notice that my legs were becoming stiff.  The side effects of Taxol were starting to hit me.  Later that evening, I went to take a shower and as I undressed, I noticed a big rash on my right hip.  My body was starting to swell up and I could totally see this in my abdomen.  Later I found out that my rash is actually a fungal infection (not bacterial as we thought).  I have a low immune system and fungus is everywhere so I was just lucky enough to get this.  There is nothing I did to get it.  To treat it I'm just taking an OTC ointment.  When I got out of the shower, the full Taxol effect had set in and I was feeling horrible.  I had a headache and horrible body ache.  I tested my oxygen level with my oximeter and it was dipping to the high 80's.   I asked my sister to hook me up to my oxygen and I felt a lot better with my breathing.  I had comfort knowing that nurse Paula would come see me in the morning.  At this point, all I wanted was just to sleep my recovery away.

Oxygen with the lil lady.

Nurse Paula called me in the morning and she told me she would be by around 11am.  I couldn't wait to see her.  I knew that by her tapping my lung, it would also provide me with greater breathing relief.  I was still on oxygen when she got there.  My oxygen level was bouncing all over the place in the 80's so it was best just to stay on it.  Paula was able to get another liter out of me (as was my nurse on Saturday who came to visit).  I must say, it does concern me that my health is declining now that we are able to get a liter of fluid out of my pleural cavity 3x a week.  Before, we were doing it once every 6 weeks.  It doesn't take an oncologist to figure out what this means for my prognosis.  I'll let you put it together.  Because my body was retaining fluid, I started taking Lasix to help rid my body of it.  I had about 10 lbs of fluid that I needed to get rid of, just based on my average body weight.  I hated feeling like mush and having to get up every 10 minutes to go to the bathroom.  Part of me writing this blog is to remind myself of tips to get me through Taxol recovery.  I would have to tell myself to stock up on the water intake after infusion.  Also start Lasix sooner.  The Taxol is what was causing my shortness of breath, so have the oxygen on standby.   Take Ativan or Ambien where needed and just sleep it off.  Taxol sucks and so not being awake to feel it is best.  

Pleurx catheter just in case you wanted to see what it looks like.

So it's Tuesday evening and I made it through chemo #10.  I've recovered a lot quicker than last time and it wasn't as bad.  I still had that moment where I was shocked that I had to do this one more time before we do a PET scan.  But I'm a warrior and I can do this.  Hopefully the next two weeks will be uneventful and I feel good.  I am planning my own Disneyland trip, a la Make A Wish style.  I know I can hit up the Dream Foundation but it's such short notice that I've decided just to do it on my own and use some resources to make it happen.  Later on I can ask Dream Foundation for a trip to Sea World in San Diego if my health allows it.  I'm excited to plan it and nurse Paula has given me a lot of good advice.  My dad flew back home tonight so I got to catch up on my tv shows on DVR.  I was watching The X Factor and The Voice.  I love singing.  I hate that I get short of breath so I can't sing for very long.  While watching these shows, I started to get sad.  I started to think about American Idol in January.  Would I be around for that?  I thought about Usher and Shakira joining The Voice.  Would I be around to see them as judges?  There are a lot of things going on in life that I'm going to miss out on.  That's why a lot of stuff doesn't faze me.  I hate hearing about politics on Facebook.  Whichever side you root for, there is bashing and it just drives me up the wall.  It doesn't matter who is elected president.  I will still have cancer and it will still be incurable.  I will not live to see 2016, that's just the reality of it.  At this point, I'm lucky if I get to see next summer.  I know it's hard to hear these things but it's just my reality that I have to accept.  I don't know how much time I have left.  I don't know if the Taxol is working.  Did I just lose my hair for nothing?  If it's not working, what do I do next?  Do I keep trying the next chemo until it works?  How am I going to feel?  What is my quality of life going to be like?  Some days I wake up and I'm feeling good and I will have a good day.  I have my moments where I get down and hate my life and cancer.  I think and think and wonder if I can keep living my life like this, as a cancer patient.  I've lost so many things to cancer.  How do I rebuild my life if I recover from this?  Most of my friends have abandoned me.  Do I let them back in now that we don't have to deal with the big C?  I really do applaud survivors.  Cancer tears your life apart and it never leaves you.  You'll always have to deal with scans and that question of it coming back.  Sometimes I think that I have the easy road.  I may not know my expiration date but at least I won't have to deal with the bullsh*t of life forever.  At the end of the day, I believe that only God knows what plan he has for me and whatever he chooses I'm completely ok with because I fully trust him.  

A girl I used to know...me. 

And with this video, I leave you my farewell song.  

Wowzers! I'm Bald (again)!

Let me start off by saying that this is my 50th blog entry and how much I've enjoyed sharing my journey with all of you.  Blogging has been a great way for me to share my true feelings about how I've felt through this process.  I want you all to get a glimpse of what a cancer patient feels emotionally, not just physically.  I also want to inspire and encourage you all to never give up when you are faced with a challenge.  Lastly, I want to network with cancer warriors, survivors, families, and anyone affected by this nasty illness.  If I can do that for at least one person, then I am one happy camper.

Dash stole my spot in bed.

Last week, my scalp was feeling tender and I knew the day that I needed my hair shaved off was soon approaching.  Sunday, I woke up and I just knew it was the day.  My scalp was hurting me so bad.  I wanted to massage it but I knew I'd only be pulling out hair with each stroke.  I was in bed up until about lunch time before I decided to go into the living room.  I had gotten up to get something and Dash swooped up into my bed and stole my spot.  Since it's a twin bed and he was laying in the middle of it, there was no room for me.  I didn't want to move him so I just went to my recliner in the living room.  My dad was watching TV and I got the remote.  I changed it to Keeping Up With the Kardashians as payback for him making me watch his western movies and Spanish novellas. After two episodes I did change it back to a movie we could both enjoy.  My mom made me Mexican rice and salmon for lunch.  I haven't been having the best appetite lately.  I've noticed that it's been declining so any craving I get, I ask for it.  My mom is also pretty good at asking me what I want to eat and not just making things I might not be in the mood for.  After I ate, I went back to my recliner and watched more TV with my dad.  I pulled a chunk of my hair out and showed it to him.  I told him I was ready for him to shave my hair off later.  Growing up, my dad used to give all my brothers their hair cuts.  Now he would be giving his daughter a hair cut.  I had to wait for my sister to arrive as I wanted her to film the process.  Finally at about 5:30pm, she arrived and I waited for her to have dinner before we headed off to the bathroom with clippers in hand.

Getting ready to shave my hair.

I set up a chair in the bath tub and my dad had the clippers in hand.  I could tell he was really hesitant to shave my hair off.  I had my sister start the video camera and my dad started up the clippers on zero.  I didn't cry.  In fact, I was glad to see it go.  I was so tired of the tender scalp.  Chunks of hair rolled off my head.  I have very thick hair and was surprised to see how much I have.  When my dad was done, I got a razor ready to shave the stubble off.  I did this because if I wear a knit hat, the stubble rubs against it and the little hairs will fall into my clothes making me itch.  I learned this from the first time I lost my hair.  My dad didn't want to do this part so I started it off by putting shaving gel on the front of my head and shaving away.  I think my dad was afraid to do it because he didn't want to cut me.  I'm on blood thinners so I bleed longer than usual, which was his fear.  I'm also prone to infection.  The entire time I was shaving my head, everyone was piping in and telling me how to do it.  I started to get annoyed because none of them had ever shaved their heads before.  I was the one who had done it before.  I was no expert but I knew what I was doing and I also had years of leg shaving experience.  Then it was time to do the back of my head and so I had my sister do it.  I could tell she had a light hand and was leaving a lot behind so when she was "done" I went over it again with a mirror in one hand.  I had my mom check the back of my head and go over any spots I missed.  Finally, I had a nice, smooth, bald head.  Never did I cry at any point.  There was no shock to seeing myself bald.  It was more of a "this better be worth it" type of emotion.  

My mom helping me shave the last of it off. 

I had immediate relief of my tender scalp.  It was amazing how it didn't hurt anymore.  Guess my hair just really wanted off of my head.  I think it was harder for my dad to see me bald than for my mom.  My mom spent the first few months of my journey taking care of me and so she was here when I was first bald.  My dad on the other hand was up at home and when we were together, I always wore wigs or scarves.  I was very shy back then about showing anyone my bald head.  

I know that my health is not what it used to be and that it has drastically declined, but I want to make it clear that I am feeling good and very much alive.  I am NOT on hospice!  I may not be able to do cart wheels but I can still dance.  As long as I keep on top of my pain meds, take my Lasix like I'm supposed to for my belly fluid, and have my pleural cavity drained 2-3 times a week, I'm doing ok.  I'm a little anxious for my eyebrows and eyelashes to fall out and I've been seeing that I'm losing several lashes a day.  If I do wear make up, I'm going to have to avoid mascara otherwise it will tug on my lashes and I'll lose them faster. My oldest brother will arrive this Friday and he's bringing me my new knit cat hat which I'm so excited to get.  Until then, I think I'm going to rock the bear hat.  I see my oncologist on Thursday and I have another round of Taxol on Friday.  I don't think I'll have a problem taking off my bear hat while at the infusion  center to show all the nurses my new hair cut.  They are all so lovely and I'd like to share this with them.  I am not my hair.  And I'm glad that I have a decent shaped head to pull this look off. I just wish there weren't any stares.  I know they are bound to happen.  And if when they do, I'd love people to ask me so I can get some stomach cancer awareness out there.  Oh and something that just popped into my head, November is Stomach Cancer Awareness Month!  We're going to have to plan something special!  Perhaps a walk?  Check out www.nostomachforcancer.org for details!  Let's show our periwinkle pride!

Enjoy the video of me getting my hair shaved off!

In bed Facebooking about my new baldness.

 

Close up of my bald but beautiful head.