Finally I Catch a Break!

I just wanted to write a quick update about how I have been feeling lately.  It seemed to me that I was having more bad days than good lately but I think all the prayers, positive vibes, and warm thoughts are working.  Friday, July 20th, my cousin Delia and I headed in to Kaiser so I can get the dressing changed on my midline.  I was feeling great.  Afterwards we went shopping at Ulta and Target.  I decided to treat myself to whatever I wanted, within reason.  I bought a new dress and some nail polishes.  I also put together a care package for one of my cancer sisters.  I had a lot of fun doing that.  The next day, I had a funeral to attend up north and my good friend Mimi drove.  Afterwards on our way home, we took my cousin to the Golden Gate Bridge (she is from Los Angeles and had never been there before).  We then went to Boudin's at Fisherman's Wharf and had a delicious lunch.  I even surprised myself when I ate the whole salad I ordered!  Two thumbs up for the bistro shrimp salad.

Goofing around with bread. 

Trying on a new hat!

My feel good streak continued on Sunday and I invited my friend Mariya over and her kids so we can go swimming at the pool.  We spent several hours splashing hours before they left just before dinner time.  Monday was my lazy day and I spent the day lounging in the apartment but I was still feeling ok.  Later on that night, my parents flew in from Washington state to visit.  Since my 31st birthday is on Sunday, they were here to help me celebrate it.  Tuesday we decided to venture out and do a little shopping but right as we were about to leave, I felt some nausea coming on and then I started to vomit.  I didn't let this discourage me and I just took some anti-nausea medication, took a barf bag with me, and we headed out.  I showed my family this awesome sno-cone place down the street, Snowee, where it's like eating fluffy, snow capped clouds! So good!  I had asked my doctor if I could have a wheel chair just in case I got tired and needed to be pushed around since I have been having lung issues lately.  She set me up with one and they delivered it Tuesday.  Hopefully I won't need to too soon or often, but I like the idea of it.  

Today, Wednesday, I started to feel a little under the weather and stayed in bed very late.  My cousin asked me if I was having any pain and I felt a little bit so I took some liquid morphine.  That did the trick!  Within minutes, I was out of bed and getting ready for another outing.  Morphine is my miracle drug.  It does not make me feel high or drugged up.  It just takes my pain away and it does this quickly.  We stopped by Ross and did a little shopping and I saw a few old faces as this is where I used to work part time up until I stopped working in January.  We had lunch at Red Robin, which was a treat for my family since they weren't used to eating at places like that.  Everyone enjoyed their meal.  I stopped by Toys R Us to pick up a True Hope doll for my giveaway that is ending on Sunday.  Remember (US residents), if you want to enter, just email me!  Lastly we went to Target where they had an awesome selection of cupcake theme party items.  I love cupcakes! They are just so pretty and cheery and fun to look at.  

I am truly blessed to wake up each and everyday.  And I am so thankful that right now I am feel very good.  I don't like being in pain or feeling sick so I am living it up while this feeling lasts.  My siblings up in Washington are driving down tomorrow with an arrival date of Friday.  They will be here to help me celebrate my birthday.   Please keep them in your prayers as they make the drive down.  I am so excited! I know my tiny 1 bedroom apartment will be packed, but it's going to be great!  Everyone will be here except for 2 of my brothers who are unable to make it.  This birthday is very special because we just don't know how many more I will get to celebrate.  Hopefully I get many more.  But for now, I'm taking things day by day and savoring these sweet moments.  I can't thank everyone enough for supporting me along my journey.  I can really feel all of you cheering me on and not letting me give up.  For that, I truly thank you!

Testing out my wheelchair. 

My birthday hat? 

Catheter to the Back...Another Thoracentesis!

As scary as it sounds to have a catheter shoved into my back, I must be strong and get it done.  My life is miserable not being able to breathe right.  I am short of breathe even when I talk.  I am winded by the time I reach my 2nd floor apartment.  Something has got to give.  I am scheduled for a 2nd thoracentesis (my first one was in June) on Wednesday, July 18th, at 8:30am.  My sister, her boyfriend, and my cousin Delia all accompany me to my appointment.  I check in and wait to be called.  The night before I did not take my Lovenox shot, just in case.  I figured I needed my blood a little thicker so I wouldn't have an issue with bleeding.  The medical assistant, Maria, calls me to a room in the back where the procedure will take place and I take Delia with me. My sister and her boyfriend had gone grocery shopping for me and would meet us back at Kaiser.  I know how this is done so I'm not really scared, just anxious.

Very anxious!

Maria takes my vitals, gets a gown out for me, and has me sign a consent form.  Suddenly Dr. Haq appears and I am glad to see him.  He really is a great doctor.  We greet each other and I tell him about the shortness of breath that I have been having.  He logs into his computer and brings up my chest X-ray that I had taken on July 10th.  I am amazed at how much fluid is in the pleural cavity of my left lung.  This is called pleural effusion.  Dr. Haq explained to me that the fluid from my ascites seeps up into my pleural cavity and accumulates.  Therefore, since my ascites is ongoing and forever, the fluid will always make its way back up into my left pleural cavity and I will continue to need to have it drained.

My left lung shows fluid.  Shadow on right lung is my liver. 

Dr. Haq also clarified for me that the ascites fluid and fluid from my pleural effusion contain cancer cells.  So we're not sure actually if the cancer has spread to my lungs, we just know that there are cancer cells floating around in there.  That made me feel so much better.  I didn't need one more important organ in my body shutting down on me.  Dr. Haq knocked on my back with his hand and he showed me how he can hear where there is fluid in my lung.  That is one thing that I love about him.  He answers all my questions and also makes this a very educational experience for me.  Instead of a nurse today, Maria the medical assistant will be helping out.  I hope she's done this before.  They leave the room and allow me to change into my gown with Delia's help.  I'm all ready to go and they reenter and Dr. Haq asks me to verify my name and my medical record number and what procedure we are doing today.  He starts opening up the kit he will use.  

The tools used during the thoracentesis.

Not gonna lie...I'm scared!

Dr. Haq begins to sterilize my back.  He remembers from last time that he used that elephant's elbow as a point of reference (I have a Ganesh tattoo on my back).  He then tells me he is going to numb me with Lidocaine.  The shot stings a little but it's nothing.  Now all of a sudden without warning I feel a pinch.  I feel like I have gotten shocked and it echoed throughout my stomach.  It's such a crazy feeling.  There's no pain, it's just a bit uncomfortable for a few seconds.  I let out a scream and Maria gently places her hand on my arm and tells me it's going to be ok.  Meanwhile, I have Delia in front of me and I'm squeezing her hands like crazy.  Dr. Haq begins removing the fluid from my pleural cavity.  I make small talk to make the time fly and then we take a break for a second.  He tells me to let him know if there is any pain or shortness of breath.  So far I'm doing ok.  We have one bottle filled up and start on a second.  The key to stopping is when I start coughing.  Everything is being done behind my back, thank God, so I can't see what's going on.  Delia later tells me that, in the picture above with the tools, the long tube, at the very tip is metal and that is what goes into my back.  This makes me cringe.  I start to cough and Dr. Haq removes the catheter.  That part is painless.  He bandages me up and he places the bottles of fluid up on the tray for me.  

Bandage is where catheter site was.

That came out of my left pleural cavity!

I am just amazed at all the fluid that was in me.  He collected 1700cc's and that made me lose about 4 lbs.  My next step is to head on over to radiology to get a chest x-ray done.  This will show how much fluid has been removed and if the lung has re expanded, also, if the lung has collapsed during the procedure.  Maria sets me up with a wheel chair and she takes me on over to radiology.  We say our goodbyes and she drops off my fluid at the lab. It will be analyzed same as last time.  Since Dr. Haq is waiting, I get called back very quickly and the tech has me in two different positions for my chest x-ray. 

I'm ready for my chest x-ray!

Dr. Haq reviews my x-ray and tells me that everything is ok and that I'm free to go home.  He did discuss a couple of other options after I asked him if it looks like I'll be needing to come back on a monthly basis to get my lung drained.  He did bring up that there is a possibility that I can have a PleurX Catheter placed on the left side of my chest.  This would allow me to have my caregiver drain my pleural effusion at home.  After he spoke with my oncologist, they felt this was reasonable.   I had a few questions for him but overall I felt ok proceeding with this.  Dr. Haq told me that there was no rush to have the placement done and to let him know if I was having shortness of breath again so I can have another thoracentesis done.  

After leaving radiology, we stopped by the cafe and I ordered a coffee.  We walked outside to the car where my sister's boyfriend was waiting for us curbside.  All of a sudden I started to get sick.  I started to want to vomit.  My sister gave me a grocery bag and I vomited.  Delia reminded me that it was the cold air.  Last time, the cold air was very harsh on my lungs and I had the same symptoms.  We made it home safely and I changed into my pajamas to rest.  My lung re expands back into place but it takes me a good two days to finally feel good and not have any shortness of breath or discomfort. 

I'm happy that there is another solution but I wondered if it meant that I was just getting sicker and my pleural effusion was getting worse.  I just want to look as normal as possible.  Even though I may not be able to feel great all the time, I can do a pretty good job of faking it with make up and a nice outfit.  On July 18th, that day marked 6 months since I have been out of work and on disability.  My life has drastically changed.  I'm used to not working anymore.  I'm a warrior.  I have the hardest job of my life ever possible.  Knowing that 6 months has passed, I started to worry about the amount of time I have left.  The clock is ticking and there is nothing I can do about it.  What if I only have a year left? Year and a half? All I could think in my head was 'Damn...how could this be???'  I started to wonder about the things I still wanted to get done.  But then I brought myself back to reality.  Back to today.  Right now, in this moment.  I can't worry about the future.  So what if I have a year left.  No one really knows.  I could have 5 years left for all we know.  One thing I know for sure is that only God has that answer.  I can only trust that he is doing the right thing for me.  

Recovering in bed with Molly by my side. 

Chemo Infusion #7, Wednesday July 11, 2012

It's Wednesday and I'm headed in to Kaiser South San Francisco with my sister for chemo #7.  I pack my lap top with me, hoping that will keep me entertained.  My blood work from the day before revealed that my potassium level was low so my oncologist ordered a couple of pills for me to take. That morning, I took tons of anti nausea.

All the pills I take the day of chemo.

I also wanted to mention that I had picked up a new plastic sleeve to cover my midline with for when I shower, at the pharmacy. It's like this huge garbage bag with bungee cords at the ends.  After using it for a while now, it doesn't work very well.  The Press'n Seal works much better.  I got out of the shower the other day and when I took off the plastic sleeve, all this water came running out.  Luckily, the bandage the nurse puts on my dressing is super water proof.  Still need to keep it covered and out of water, but at least I know that water is not entering the midline.

My new plastic sleeve for showering.

My sister drops me off at Kaiser and I tell her to pick me up in 6 hours.  She is off to go shopping and what not.  I check in and notice the receipt says that today Clarita will be my nurse.  She calls me back shortly and leads me to the back.  I tell her how excited I am to use my midline today.  She sets me up in my recliner and hooks me up to some fluids and magnesium.  I cannot tell you how great it was just to be hooked up to my midline and have no needle poke!

No needle poke! Chemo is infused through my midline!

After an hour or so of fluids, Clarita confers with head nurse Cynthia about my Epirubicin.  We hit a small bump in the road.  Since we cannot get a blood return from my midline, we cannot administer Epirubicin through my midline. Darn it!  Before Epirubicin is given, blood return must be confirmed.  This way, the nurse knows that she is in the right spot.  There is a possibility that if they administer Epirubicin through my midline, that they are in the wrong area and it could possible burn me and cause a reaction.  To be safe, Clarita starts an IV on my right hand.  The needle poke hurt, I admit, but I thanked my lucky stars that Clarita made it on the first try.  This chemo drug is slowly pushed into the IV over about 10-15 minutes and that's it!  We're done.  Clarita removes my IV and bandages me up.  There is a little bit of bleeding but I don't mind.  

My IV for Epirubicin.

Nurse Clarita administering Epirubicin.

Next up is my Cisplatin and Clarita just hooks it up to my midline and I infuse away. I have my lap top out and I'm poking around on Facebook when all of a sudden I see two sweet little faces.  It's Wednesday and that means Cricket and Ginger are making their rounds at the infusion center.  Cricket jumps up on my lap and I pet her fiercely.  I love pet assisted therapy!  Let's me get my dog fix and away from Molly and Dash who would be jealous if they knew I was petting a dog.  

Cricket and I.

The rest of chemo is fairly uneventful.  My neighbor next to me is having a conversation with her husband and he is speaking loudly.  I'm actually trying to take a nap and it's disturbing me.  People need to learn chemo chair etiquette. Use headphones while watching TV.  No smelly food.  Use indoor voices.  And absolutely no perfume or cologne.  Just a few things people should keep in mind whether they are the patient or a visitor.  Finally, shortly after 4pm I am released and my sister picks me up.  My sis asks if I want to pick up any food on the way home and I tell her no, I just want to get home and nap.  We get home and I quickly change into my pajamas and I head to bed.  I take a nap and my sister wakes me up later around 10:30pm to remind me of my final dose of pills for the night and my Lovenox shot.  Chemo brain is in full effect and I am feeling puffy.  I am confused.  When I get up to go to the bathroom, I am running into walls.  I was really glad to have my sister there because I was not in the right frame of mind and I would have slept until morning.  The next day, I'm still puffy and feeling just a little bit of nausea but luckily there is no vomiting.  I plan on staying in the apartment for a few days as I know going outside will just make me dizzy.  I had gained 7 lbs of fluid during chemo so now I have 15 lbs to rid my body of.  I start taking my diuretic and every 15 minutes I'm going to the bathroom.  I come up with this bright idea to shop online at Target for swim suits and I somehow put my items in my shopping cart and pay, only to realize later that I bought 3 pairs of swim bottoms and no tops.  It's the chemo brain I tell you!  So no more online shopping while chemo brain is in full effect.  I'm also waiting for Dr. Haq's office to call me with an appointment for my thoracentesis.  The pleural effusion is making it hard for me to breathe as well as all the pressure in my belly from my ascites.  Lasix cannot work fast enough!  Another thing that I notice is that I am very cranky.  I try to sleep most of the day off but my sister comes in to remind me that I need to eat something and my appetite just is not there.  I hear from other warriors that they also get cranky after chemo and I wonder if it's chemo or perhaps the steroid (Decadron) that I think.  I will have to ask my oncologist about this.  Even Molly and Dash were getting on my nerves.  I felt so bad for Molly as she only wanted to comfort me and I just wasn't having any of it.  Thursday evening, my sister gives me my Neulasta shot which will boost my neutrophils.  I forget to take Tylenol and Claritin D to prevent bone pain but luckily I didn't have any.

My midline bled on me!

I woke up Friday morning and everything was fine.  I go to the kitchen and weigh myself, checking the progress of my Lasix, and return to bed.  I suddenly look at my arm and see a bloody mess (pictured above).  It wasn't there when I woke it.  At least I don't remember seeing it.  Even the comforter is soaked in blood.  I immediately call the oncology center and ask if I can come in to get the dressing changed.  I have a 10:30am appointment so I get up and get ready.  My sister and I head on in and Nurse Cynthia takes care of me.  I find it ironic that my midline bled since it wouldn't give us a blood return when we needed it to.  It's just something that happened. Not sure why.  

All cleaned up now.

Nurse Cynthia to the rescue!

Nurses Clarita and Marita showing concern.

Cynthia does impeccable work and I'm all patched up and ready to go.  I spend most of the weekend in bed and when I wake up on Sunday, I am not feeling well. I take my pills as usual, including anti-nausea, but this doesn't help.  I try to breathe deeply and lay in bed.  I'm still taking Lasix and it is doing a great job of relieving the fluid in my belly. I'm actually now back to my normal weight.  By 3pm, I haven't eaten anything all day and I'm still feeling woozy.  My appetite has been shot since chemo and nothing sounds good to eat and I just couldn't even bring myself to eat. I'm feeling sick.  I run to the bathroom and I start to vomit.  It's not often that I vomit, but when I do, it's just horrible.  It won't stop and I'm stuck in the bathroom for a few minutes.  I know I'm dehydrated, too. I get back in bed and I'm miserable.  So much that I contemplate in my head that maybe I should go to the ER, but I really hate that place and I tough it out until the next morning when I can head on in to the infusion center for fluids.  Somehow I make it through the night and first thing in the morning, I call in to oncology and ask if I can come in for IV anti-nausea and fluids.  I go in at about noon and they hook my midline up to the machine.  I lay reclined with blankets on me as I'm so cold.  I take a nap and my sister waits patiently nearby in a chair. 

Getting fluids. 

We head home after about 2 hours and I still have no appetite.  I am feeling better but I know that I have to eat something.  Nothing sounds desirable.  After hopping on the scale, I realize that I have lost 20 lbs since chemo.  That is a lot of pressure off of my body and I'm so thankful.  Again, I patiently wait for Dr. Haq's office to call me for my thoracentesis appointment.  I make a mental note to call them that day.  For now, I have no idea how to get some nutrition in me and thankfully, another warrior takes me under her wings and advises me on a few simple things to try out.  First, ice chips.  It's not much but it's hydration and it works.  Then I try a popsicle.  It may be sugar free and 15 calories but I eat one and I keep it down.  No vomiting!  I call on over to Dr. Haq's office and the medical assistant tells me that Dr. Haq is on vacation until tomorrow and she has left a big note on his desk about me.  She says she'll call tomorrow.  I was able to down another popsicle that evening. 

Tuesday comes and my sister and I speak about who will be my caretaker while she is out on vacation starting that Friday.  I ask my cousin from LA if she would like to come hang out with me and she agrees.  Arrangements are made for my cousin to fly in that evening.  I decide to venture out and I drive myself to Taco Bell where I order a bean burrito.  It took me about 4 hours but I ate the whole thing and I was so happy that I was able to eat solids.  Finally at about 3pm, I spoke with Dr. Haq's medical assistant who tells me to arrive at the Orchid Center at 8:30am tomorrow for my thoracentesis.  Having a catheter shoved into your back is no fun but I am super happy as not being able to breathe is worse.  

  

I have to be honest.  My journey started in January of this year and the first 4 months of treatment were a breeze. Piece of cake.  I responded nicely to chemo and then suddenly, things just got worse.  It was around the time I went to Seattle for Memorial Day to visit family that I started to get sick.  I was on a 2 week break from chemo and my cancer started growing.  Bastard.  Ever since then, I feel like I have gradually been getting worse.  Even though my chemo doses are reduced from when I first started, I seem to be having a hard time now with chemo.  I have more bad days than good, it seems, and even though I get discouraged a lot, I keep going.  Sometimes when I'm alone, I allow myself to cry.  I'm not feeding into my cancer.  I'm allowing myself to feel a normal emotion. Sometimes I cry because I'm tired of feeling pain and nausea. Sometimes I cry because I'm sad that I have cancer and that it's terminal.  But for some reason, I keep fighting.  I'm doing this for myself, my family, and my friends.  I deserve to get the most out of life and the most time I can get.  I feel like I'm walking along and cancer will just come up behind me and trip me.  My face falls flat on the ground in a puddle of mud.  It's frustrating, but I will not let cancer get the better of me.  I know that good days are ahead, I just have to be patient and wait for them.  It has now officially been 6 months since I stopped working and started my journey.  It is crazy and scary.  I feel like the clock is ticking and there's nothing I can do to slow it down.  It makes me angry sometimes.  But I just have to savor each day and live it the way I want to.  One thing that has kept me going is hope.  It's not always sunshine, rainbows, gum drops, and baskets of kittens.  There are a lot of dark days.  But hope is what I have.  I'm hoping they find a cure soon.  But if they don't, that's ok...someday they will.  This is just my life and how it is written out.  I can't be angry and I don't want to waste my time being angry.  I just want to "use my time wisely" as my 5th grade teacher would say.  That mostly includes spending time with my loved ones.  It's tough being a cancer patient but at the same time, I have to feel blessed for the life that I have lived and the life that remains inside of me.  

Molly passed out on my pillow as I recover from chemo.