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.

7/10/12 Follow Up Appointment With My Oncologist

It's Sunday, July 8th and I actually had a good day and spent the day at the pool with my sister and some friends.  I was so happy to be able to wrap my arm in some Glad Press 'n Seal and sit in the hot tub.  The pool area at my apartment has been under renovation for months and while I was bummed to not be able to go in the pool, I was happy to at least enjoy bbqing on the grill and soak in the hot tub.  I did get some stares when I was in there. I think most people had assumed that I had gotten a tattoo and was just protecting it but there was one couple who spoke amongst themselves in Spanish about why my arm was wrapped.  "Well she has all her hair but she doesn't have the face of a sick person." I heard them say.  I was caught off guard by their comments as I know Spanish and didn't understand how they could just talk about me in front of me like that.  I guess it doesn't look like I understand Spanish.  I wish people would just ask me questions instead of stare or whisper.  I'm completely open about my cancer and am happy to answer any questions people have.  There was another couple I met in the hot tub that asked me if I had just gotten a tattoo and I told them no, it was a midline catheter because I have cancer.  I ended up striking up a conversation with the female and she seemed very nice.  Meanwhile, my sister's boyfriend grilled some hot dogs and I was able to eat just one.  I didn't want to press my luck and overdo it.

Relaxing in the hot tub. 

The next day, I had my last session with my therapist. Waking up is always a daily battle with nausea.  And today was no different.  I wasn't feeling great so I called and cancelled my appointment.  I really could not get out of bed and I was hoping to get my chest x-ray done today also but I just didn't see myself leaving the apartment.  I'm anxious to get my chest x-ray done because this will only confirm that I have a large pleural effusion in my left lung and I'll be needing another thoracentesis.  But I didn't need an x-ray t tell me that.  I could feel it when I lay down.  There is a lot of pressure on my chest and I can hear myself wheezing.

How my mood has been lately.

Tuesday I have my follow up appointment with my oncologist.  We always do pre chemo blood work and meet the day before I'm scheduled to do chemo.  It's weird not waking up at 8am and heading to the lab.  I have a midline now and all my blood draws will be taken through here.  My sister and I head out to Kaiser but I wasn't feeling good.  I remember frowning the entire time I drove to the appointment.  My sister attempted to make small talk but I just wasn't in the mood.  And again, I blame it on my daily battle of waking up with nausea.  Today I decide to wear a wig just because I want to blend in and don't want to show that I'm sick and not feeling well.  After valeting the car, we check in and the medical assistant, Latishma, takes me back.  There is a student working with her today.  I'm very patient as she takes my temperature and blood pressure.  I can tell she is nervous.   Next I hop on to the scale and I cringe at the number.  I've gained 8 lbs.  Part of me still has that mentality of a woman watching her figure and I'm hard on myself.  But I look down at my belly and I can tell that my ascites is building up.  Besides,  I had weighed myself a week earlier at Kaiser and with there being an 8 lbs difference, I knew it had to be the belly fluid.  I'm taken back to the exam room and I tell Latishma about how I'm having problems breathing.  She checks my oxygen level and I'm at a 96, which is normal.  I know that I'm getting enough oxygen, it just gets very uncomfortable to breathe sometimes.  She leaves the room and almost immediately, my oncologist comes in.  We shake hands and go over the standard questions she asks me every week.  She is happy to see that I have my midline catheter in place.  I tell her how I haven't been doing well lately.  I feel as if everyday it's a struggle to get my nausea and pain under control.  I just always thought for some reason that my first year of treatment would be a breeze.  Since the first 4 months of chemo were pretty much side effect free, I just thought that I would continue to feel that way.  I never imagined that I would take a sharp turn for the worse and just start feeling crappy out of the blue.  It makes me feel like the time I have remaining has been cut in half.  But my doctor reminds me how this cancer journey is a roller coaster ride.  She offers me hope and tells me that while I may not feel good right now, I can still feel better in the future.    

I always have a list of questions that I write out in the note pad feature on my iPhone.  We go over these and there are a couple of things I learned today. 

*I'm currently on 80 mg of Lasix but we decide to bump it up to 100 mg to get this 8 lbs of fluid out of me.  I had noticed that on the lower dose, it wasn't increasing my need to urinate so we had to go up a little.  Ridding my body of this excess fluid will allow me to breathe easier as it is squishing my organs.  

*Chemotherapy doesn't necessarily make me infertile.  I still get erratic periods and at one point went months without them while on treatment but chemo may not always suppress the ovaries. 

*We can keep my midline catheter in for months until it will need to be replaced.  If I get an infection, then it will need to be removed. 

*I was curious as to why I always had to have weekly blood tests while on Coumadin but not on Lovenox.  Apparently, Coumadin is greatly affected by diet while Lovenox isn't.  My doctor prescribes the dosage of Lovenox based on my weight and it will consistently be at the same "thinness" level.  No need for blood test because food doesn't affect my blood level. 

*All stage IV stomach cancers were not created equal.  There is no denying that had I been a surgery candidate that my survival rate would have gone up, but that's just not the case here.  I asked my oncologist just how bad my cancer is.  I figured that since it had spread to my bones, that must mean I'm in bad shape.  But she said I'm somewhere in the middle of the totem pole.  Had my cancer spread to my liver, then that would be at the bottom of the totem pole because chemo affects the liver. She then tells me that the fluid from my thoracentesis had revealed that the cancer has spread to my lungs. My heart sank when I heard this.  I wanted her to double check to make sure she had the right person but at this point, it doesn't matter.  I'm fighting the same battle and I'm fighting it as hard as I can regardless of where it has spread to.  

*Apparently I haven't been taking my morphine correctly.  I am on two different types of morphine.  One is a tablet form that I take every 12 hours and the other is a liquid solution that I can take every 2-4 hours for breakthrough pain. When I wake up in the morning, I take 30 mg of morphine and throughout the day, I'll take 2 ml of liquid.  At night, I had been skipping my dose.  I don't know why it never occurred to me that I was struggling to manage my pain because there wasn't a consistent flow of morphine in my body.  Now that I take the tablets every 12 hours, I noticed that I don't wake up in pain and I use less liquid morphine. It was just one of those duh moments and I wish I had thought it through before instead of trying to come up with my own routine that wasn't working.  

She next did a physical exam on me.  She had me take deep breaths in and out and she told me she could hear the fluid in the left side.  She pressed on my belly and felt that my ascites was acting up and next she prodded on my pelvic region where my cantaloupe sized mass is.  I asked her if it felt bigger to her.  To me, it feels bigger.  But that's just the scared person inside of me thinking that my cancer is growing out of control and that chemo is not working.  She told me should couldn't tell if it was much larger, but we'd have to wait until my next Pet scan in August to know for sure.  I still hadn't done my blood work yet to see how my immune system was doing but she told me that we would proceed with chemo and I would get a Neulasta shot the day after chemo to boost my neutrophils.  

After my appointment, I head on over to the infusion center where Nurse Cynthia will do my blood draw and also change the dressing on my midline.  Cynthia asked me if Radiology had told me to get the dressing changed the next day and I told her no.  Apparently I was supposed to get the dressing changed 24 hours after placement because it is expected that it would bleed and would need to be cleaned up.  While it did bleed the evening after placement, my sister and I just cleaned it up ourselves with alcohol pads.  Cynthia removed my dressing and began the clean up process.  It stung but she did a fantastic job. 

Cleaning my midline.

New dressing!

Cynthia flushed my catheter out and tried getting a blood return but it wasn't happening. No blood was coming through.  I think this is because the midline does not go near the superior vena cava where it gets the blood.  This now means that I'll have to go down to the lab for my pre chemo blood work.  Darn it.  And here I was thinking that the rest of my days would be needle free.

Flushing and looking for blood return.

I get sent down to the lab and while I'm there I also check into Radiology for my chest x-ray. I get called into the lab and I get a tech who is having a hard time finding a vein.  After two failed attempts, she finally draws blood on the 3rd try.  I suddenly see my oncologist walking by and she comes over to apologize for the needle sticks.  Her hopes were that the midline would be able to give me a blood return but since it won't, I can hopefully withstand the poking every 3 weeks.  

I'll be getting needle sticks every 3 weeks. 

Next I head on over and wait in Radiology. I get called back and the process is fairy quick.  Later my doctor confirms that I do need another thoracentesis. Surprisingly I'm not scared. I just want the relief badly.  Our final stop is the pharmacy where I am refilling 9 prescriptions today.  I am forever grateful that I have insurance to cover my medications.  I spent $120 on copays for meds worth $3,000. 

Pharmacy receipt. 

I may not be feeling all that great but I'm looking forward to chemo.  I know that I have to push through and stay on schedule. I'm hoping that chemo #7 is easy on my body.  I always feel better after meeting with my oncologist.  She always answers my questions and helps me with any concerns that I have.  The physical aspect of my cancer journey is one thing.  I can take it.  I can feel pain and nausea with no problems because I know that there are pills to help me manage those side effects.  It's the emotional aspect that sometimes just tears me up so bad inside.  I question myself.  Asking if I'm strong enough to do this.  I'm putting my body through this roughness with no guarantee that chemo will work.  It's a gamble that I have to take and hope is the only thing that I have pulling me through.  I'm not going to sit here with a happy face talking about how I'm kicking cancer's butt because I truly don't know my progress.  And I want to be honest that I have had more bad days than good this time around.  It doesn't make me a weak person.  I see myself as a survivor.  I see myself as a strong person.  Not everyone can go through this battle and still have a smile on their face.  So yes, I'm going to complain when I'm feeling lousy and I'm also going to boast when I'm having a good day.  This is the fight of my life.  I didn't ask for it.  It was just unfairly given to me.  The only choice I had was to be strong.  There were no other options.  I could have quit.  I could have said that I didn't even want to put up a fight, but for me, that was just out of the question.  Because what's important to me is that I cash in on all the time that I have left.  And I want to do it with dignity.  Never would I have imagined that my life would have turned out this way.  I can't change it.  I can only fight and fight hard and hope that a real cure comes along.

True Hope Doll Giveaway

I have been following a movement on Facebook for quite some time and it's called:

Beautiful and Bald Barbie! Let's see if we can get it made. .  

Description

We WILL see a Beautiful and Bald "friend of Barbie" made to help young girls who live with hair loss due to cancer treatments, Alopecia or Trichotillomania . Also, for young girls who are having trouble coping with their mother's hair loss from chemo. Many children have some difficulty accepting their mother, sister, aunt, grandparent or friend going from a long haired to a bald.

Unlike men, who having a bald head is trendy and a fashion statement, women and children are stared at and often teased when they go in public, expected to cover their bald heads. We want to stop the shame and stigma that children and women deal with having hair loss.

Accessories such as wigs, bandanas, scarves and hats will be included. This will be a great coping mechanism for young girls dealing with hair loss themselves or a loved one.

emails can be directed to thebbmovement@gmail.com

Petition can be signed at: http://www.change.org/petitions/mattel-inc-sell-us-the-bald-friend-of-barbie

They were successful and 6 dolls were made in the True Hope line of Bratz and Moxie dolls by MGA.  A big round of applause, please!  Below are the dolls.

I personally have a special liking to Sophina, which is the first doll on the left because she has big brown eyes.  In her box, she comes with a purple knit hat that matches one that my sister in law made me when I lost my hair.  Initially when the dolls came out, I ran out and bought Sophina. 

I realized that Sophina was just going to sit on my dresser collecting dust so I graciously gifted her to one of my cancer sister's in Alabama who has a small daughter.  Sophina is meant to be played with and she is enjoying her new home.  Then I got this idea. Why not purchase another doll and spread the lesson of hope, bravery, courage, and adversity?  In this day of age where there is so much bullying going on, I thought these True Hope dolls could be used as a learning tool for parents.  I opened up a giveaway to my US friends on Facebook where I was to gift one doll to whomever wanted to enter.  Whether you have a child who still plays with dolls or you would like to gift to a child who could use this doll, I left my giveaway open for a few weeks.  I closed my contest on 7/19 and held my drawing on 7/10.  I announced my winner who is graciously gifting the doll to a special child who has already faced difficult circumstances in her life as she weighed only 14 ounces when she was born.  I was truly touched by her story and she is a thriving little girl today.  

With my 31st birthday coming up at the end of this month on July 29th, I thought it would be a great idea to have another giveaway.  I have been contacted by a couple of supporters who would like to generously donate a couple of dolls for giveaways.  I'm excited as this means we can keep the lesson going!  Contest is now open!  Those who did not win this last round are still in the running (there are 38 of you) and anyone who would like to enter can do so (USA only, please).  The last winner is not eligible.  If you would like to enter my giveaway, here are the ways:

Email me at: julymoose@hotmail.com with the subject line "True Hope Doll" and I will enter you.

Message me on my personal Facebook if you are a friend, www.facebook.com/marcam and let me know you'd like to enter.

Message me on my Team Marta page on Facebook, www.facebook.com/TeamMartaOfficial and let me know you'd like to enter. 

Anyone can friend me on FB, just ask! And anyone can like my Team page.  If you are not on FB, email just works as well. 

Again, I'm leaving this open to USA residents only and contest closes on July 29th and I will announce the winner on July 30th.  Have fun and I hope you enter!

If you would like to purchase your own True Hope doll, per Jane Bingham (the brains behind this movement):

hey are available at Toys R Us stores in the USA. online at toysrus.com. In Canada they are available for pre-order at toysrus.ca. They will be on shelves in Canada and the UK at toysrus store end of July/early August. Starting next week they week be available online at Walmart.som and in July at target.com.

And anyone interested in keeping the giveaways going, please contact me via email or Facebook.  This is all based on donations in the Team Marta fund. 

Hope you are inspired as much as I was by these dolls!

If I am missing credit where credit is due in this movement, please contact me and I will edit this posting.

Not a Port, Not a PICC Line But a Midline

July is here and I can't believe that it has now been 6 months since I started my cancer journey.  Had I just let my cancer eat me alive and refuse chemotherapy, I would have been dead within 6-12 months.  My cancer is a sneaky little bastard but with the help of chemo, I'm showing it who is boss.  July is also a very special month because it is my 31st birthday on the 29th.  And I'm very pleased to announce that many of my siblings from Seattle (including my mom) will be traveling down for my birthday.  It really means a lot to me to have them here and help me celebrate since we don't know how many more birthdays I will get.

It's Monday, July 2nd, and I'm waiting for a call from radiology with a new appointment time to have my midline catheter placed.  I'm super anxious as my next chemo is set for July 11th and since we have a holiday this week, 4th of July, I'm not sure if I will get my midline done before my next treatment.  I guess I could keep getting needle pokes for a little while longer but my veins have really had it.  I call radiology all day but I keep getting voicemail.  I don't leave a message, hoping that if I call again in half an hour that I would get a real person.  Finally at about 3pm, I decide to leave a message.  I tell Jackie, the woman who's voicemail it is, that I'm wondering if I can get my midline placed before July 11th and ask her to call me back.  Luckily within 10 minutes, I get a call back.  Derek tells me Jackie is on vacation this week and that he'll look at the schedule for me.  There is an opening at 10:30am tomorrow if I'm available.  Of course I'm available, I tell him.  I ask him if I should stop Lovenox for the night and he tells him he'll call me back after he asks the radiologist.  I get off the phone and tell my sister about my new appointment and tell her that we need to be at the hospital at 9:30am.  I'm so happy.  Derek calls me back, confirming that I need to stop Lovenox just for tonight.  He says that no blood work is needed before hand and that they'll only be using local anesthesia.

I wake up on Tuesday and report to Kaiser in South San Francisco at 9:30am.  I didn't have anything to eat or drink since the night before and the only pill I took was my oral chemo pill.  My sister is with me and we valet the car.  We see that they are having a Farmer's Market today and take a look at the tables before heading towards admitting.  There is a lady selling beautiful orchids and I want to make sure I get one on the way out.  At admitting, I meet Virginia again.  I tell her about how I wasn't able to get my port last week because the doctor had found blood clots as I was on the table.  She told me she would cross her fingers for me, hoping that the midline placement would be a success.  She places a lovely wristband on me and sends me over to radiology with paperwork, where I turn it in to the receptionist.  We sit down in the chairs and wait to be called back.  Within a few minutes, a nurse calls me over and I tell me sister to come with me.  I'm insistent up this.  We head back to the room but my sister waits outside for a minute as the nurse, Donna, gets me into my bed and hands me a gown.  I see Igor and Yolanda from last week and Yolanda greets me.  I tell her how I'm back hoping that I can get a midline today.  Donna takes my vitals and places stickers on my body that are attached to some machine that will monitor my heart.  We go over my list of medications.  She goes and let's my sister into the room.  I ask Donna if she is going to start an IV on me but she tells me that it isn't necessary since they are only using local anesthesia.

Donna placing stickers on my body. 

Ready to get my midline!

I'm happy to see that Dr. Nelson is the radiologist who will be performing my procedure today.  She comes over to greet me and tells me more about what is going to happen today.  She tells me that they typically place the midline on the right arm but if I have a strong preference to place it on the left, they can.  I inform her about my blood clots that had presented themselves on my neck and right arm a couple of week ago and say that it's probably a good idea to use the left arm and she agrees.  It takes months for blood clots to dissolve so I didn't want to start the procedure on the right arm only to be stopped because she found blood clots.  Dr. Nelson tells me about the risks of the procedure and says that since I'm on blood thinners, the worst that will happen is that today the incision will seep blood.  She tells me how I will have the catheter hanging out of my arm and it will be covered by a dressing that will need to be changed once a week in addition to being flushed. They will give me a mesh sleeve to wear so that the catheter doesn't snag on anything.  I sign the consent form and tell her I'm all ready.  My sister leaves the room and waits outside as I'm wheeled into the procedure room.  The procedure will be done using sterile technique. I roll on over to the table and I lay there.  It is so cold.  I get one thin blanket to cover my body and I'm shivering. Yolanda places a big cap on my hair to cover it and they prep my left arm.  Yolanda holds my left arm up as Mayra uses a solution to sterilize my arm.  I look away so that the solution doesn't splash into my eyes.  They put a tent up around my head and I cannot see what they are doing.  I'm all ready to go and my left arm is extended out.  Dr. Nelson enters the room.  She announces what they are doing and it is all very organized.  There is a nurses assistant in the room and she stands behind a clear plastic partition that is specially put up to keep the procedure completely sterile.  Dr. Nelson injects my arm with Lidocaine to numb it up.  It doesn't hurt much but it does sting.  I always tell myself to suck it up and remind myself of all the tattoos on my body.  She uses an ultrasound to help identify where the catheter will go in and to help guide her.  She measures how long the catheter will be and I hear her saying that she's going to start inserting it.  I wasn't in any pain, it was just uncomfortable.  And then there was a part where she was placing a lot of pressure on my arm and it just felt weird.  I'm so glad I could not see what she was doing.  Within minutes, she was done.  My arm felt very strange and I think it was because of the Lidocaine.  I look at my arm and there is a plastic tube hanging out of it with a clear bandage on it.  She tells me that I can go ahead and move my arm around like normal.

My new midline!

They wheel me out of the procedure room and back to my bed.  My sister is allowed back in and she helps me get dressed.  I notice that there is bleeding just as Dr. Nelson said would happen and I tell Donna about this.  Igor comes over and cleans it up, putting a new dressing on.  Donna gives me a couple of bandages and other supplies just in case I have more problems with blood seeping out tonight. I'm handed a mesh sleeve to put over my midline to cover it up a little.  It reminds me of a hooker because it looks like a piece of white fishnet stockings.

What the mesh sleeve looks like.

They allow me to leave and we head on over to the cafe where I grab a smoothie.  We browse the tables at the Farmer's Market before retrieving my car from valet.  I'm able to buy my purple and white orchid and some kettle corn.  I make my sister drive home since my arm is still numb from the Lidocaine.  We arrive at home and I change into my pajamas.  I plan on resting up and sleeping.  I announce on my Facebook that my midline was a success.  I got a tip from another cancer warrior about taking tube socks and cutting them up to make sleeves for my midline.  I check my sock drawer and find a pair of fancy knee length socks.  I cut them up and it made a very nice sleeve.  Much more stylish than the one I got from the hospital.  

My homemade sleeve. 

It's now the 4th of July and I decide to stay home and rest.  The property management at my apartment informs us that the pool that has been under renovations for months is now open.  I am super bummed out because I was looking forward to using it and now that I have my midline, I can't submerge my arm under water.  When I take a shower, I now have to wrap my arm in Glad Press'n Seal so that it does not get wet.

What shower time will look like from now on.

I'll admit.  Sometimes I take a shower every other day because it's such a hassle wrapping my arm up.  And I've noticed a huge decrease in my energy level, too.  I'm always fatigued.  My appetite has been slowly disappearing and at one point, I just could not bring myself to eat anything.  It was towards the end of the night on the 4th when I noticed that I had hardly eaten anything. I felt like there was something stuck in my throat and my stomach felt full.  The next day, I emailed my doctor about my concerns with my loss of appetite.  I told her that I felt full when I woke up that morning and I had an empty stomach.  She told me that if the cancer in my stomach was growing, it could cause me to feel full.  I felt so discouraged.  Since we had done a CT scan on June 4th, my doctor wanted to wait two my chemo cycles before we did a PET scan to see what was going on.  I would do the scan in August and then we'll know if my cancer is growing or not.  But we were going to give chemo a chance to slow it down and perhaps even to shrink it.  She also asked me to feel my pelvic mass to see if it felt bigger.  Almost nightly, when I lay down to sleep, I always feel my pelvic mass. I knew that it felt bigger.  I was just in denial and had high hopes that my cancer is shrinking and I didn't want to admit that it felt bigger.  I told my oncologist about this.  For now, I was increasing my dosage of morphine to help with the pain.  When I wake up, I have a strange feeling in my stomach. It is a weird pain.  It makes me feel gross.  I take my liquid morphine and it kicks in fast.  It takes all this pain away and I feel completely normal.  I don't feel high or loopy.  Morphine doesn't make me sleepy anymore.  It has really been a miracle drug for me.  I also ask my oncologist if she can order a chest x-ray to see how much fluid is in my lungs.  I know that it's time for me to have another thoracentesis.  When I lay on my back, I feel as if there is something on my chest weighing it down.  And when I cough or sneeze, it feels weird.  I also caught myself wheezing one night.  At least now that I've had the procedure done before, I know what to expect and I'm not scared.  I'm just saddened that the fluid had returned.  The fluid in my belly, the ascites, has also returned.  I look in the mirror and I can see that my belly is sticking out.  I'm now on 80 mg of Lasix but I see that it is not increasing my need to urinate after a few days of taking it.  I decided to take one of my old 20 mg pills in addition to the 80 mg and I see a difference.  100 mg is what works to help me rid the ascites.  

 I attempt to eat every couple of hours, even if it's just a few bites. On Friday, I wake up craving Thai food.   It's noon already so I call in an order to my favorite Thai restaurant and go pick up the food.  I am happy that I eat a very good portion.  This eases my fear that the cancer in my stomach is growing.  If it was, how could I possibly fit that much food in it?  I'm now noticing that it's a daily struggle to wake up and manage my pain.  I cannot function without the liquid morphine. I am in bed hating life if I don't have it.  Once it kicks in, I'm more likely to want to get out of the apartment.  I'm not quite ready to get back into traveling since my lungs are not at their best right now.  And I'm still struggling to find my energy.  One night, I was having a lot of pain and the thoughts in my head just came crashing down on me.  I started to question why I was doing this.  I asked myself if this was it, was I coming to the end of my journey.  I'm always afraid that cancer is winning and that I'm lucky if I have a few more months to live.  But I have to trust that my doctor is treating me in the best way possible and that I can fight this. It's such a scary journey, but I'm happy to have connected with other friends in the cancer community that have helped me during the rough moments.  They help get me through them and encourage me to stand up to cancer and keep fighting.  I'm also grateful to have a lot of people cheering me on through Facebook.  Their words of encouragement mean the world to me.  I couldn't imagine fighting this cancer without anyone there to offer their support.  They help keep my spirit up.  It's true what they say, no one fights cancer alone.  

Pet therapy:  resting with Molly at my side.