Aredia Treatment #2

Last Wednesday on April 4th, I had my 2nd Aredia treatment. (Aredia is a bone treatment that I do monthly since my cancer has spread to my bones and it will help strengthen them).  I got to Kaiser for my 10am appointment and was feeling great.  Because Aredia causes bone pain, I thought I would get a head start and go ahead and start taking Tylenol.  I walked into the infusion center and they were pretty busy.  Most of the chairs were filled and I took my spot in the corner.  My nurse came over and we took a look at my arms.  I still had my bruising from my last blood draw and from my genetics testing blood draw.  I told her I wanted to get the IV in my hand since the last time I had Aredia, I developed a reaction at the injection site.  The infusion this time around took a little over an hour.  I mostly just rested and played Draw Something on my phone.

Waiting for my nurse to start my IV.

The next morning, I woke up at 6:30am with intense bone pain.  It felt like an elephant had sat on me and broke every bone in my body.  I got up immediately and took some Tylenol.  I'm taking Tylenol for the pain as this is what the nurses suggested.  I laid back in bed and just cried.  It hurt so bad and I started questioning myself.  Why was I putting my body through this?  This pain was worse than the pain that chemo made me feel.  I finally went back to sleep an hour and a half later.  I woke up again at noon time and the pain was still there.  I took another dose of Tylenol but this time I decided to take some Ativan as well.  I just wanted to stay asleep so I didn't have to feel anything.  It was finally around 7pm when I decided to come out to the living room and watch TV.  I bundled up with a blanket on the couch.  My body was stiff as a board and I was so cold.  It was very hard for me to get up and turn the heater on.  Then this idea popped into my head.  I decided I was going to give medical marijuana a try.  Back in February, I had gotten my medical card and supplies.  I had tried it once since diagnosis but I wasn't really comfortable doing it since my old school Mexican mom is living with me as my care taker. But now that she is on break and back in WA, I was definitely ready to try it again.  And I was in so much pain that I was willing to try anything.  I went into the bathroom with my vaporizer and loaded it up.  I wasn't sure how many hits I was supposed to take.  I went slow.  It did make me cough a couple times.  I went back to the living room and sat on the couch again.  I was amazed at how I was feeling. I was sitting up at this point with the tv on and my Mac in my lap.  I felt more relaxed and the pain felt lighter.  I think I found my answer to bone pain.

Let me take a minute to explain my views on marijuana.  I was never a recreational user.  In my 20's, I did experiment socially and had tried it with friends but it never did anything for me.  I didn't really care if anyone around me did it but deep down I thought people who smoke marijuana were pothead losers.  But then I got sick and I read a lot about the use of medical marijuana by cancer patients in many forums.  I was open to the idea but I continued to use codeine and oxycodone for my pain if I ever had it.  Just in case, I had my supplies and marijuana stash ready.  Then I came to this conclusion.  Marijuana is a plant.  It is not addictive.  You can't overdose on it and it won't kill you.  Yes, people smoke it socially to get high.  No, it's not a gateway drug to other more dangerous illegal drugs.  Does it make me want to take heroin? No.  Drinking on the other hand is legal.  People do it socially, to relax, to enjoy it, to get drunk...the reasons are endless (as with marijuana).  You can overdose on alcohol.  It can poison you and can kill you.  Worse, you can kill someone else when you drink and drive.  I actually gave up drinking a few months ago around the time I started getting symptoms.  And believe me, when I was in my early 20's, alcohol made me feel so uninhibited I did things am not proud of.  So I'm not sure why marijuana is illegal yet there are worse things out there that are legal.  Take my oxycodone for example.  It's legal while I have a prescription for it.  It's basically synthetic heroin.  It is highly addicted and comes with horrible side effects like my favorite, constipation (insert eye roll here).  And if I take the whole bottle, it will most likely kill me.  Until you have cancer pain, do not judge me on how I choose to alleviate my pain. 

Chemo Infusion #3, Tuesday, March 27th, 2012

I was scheduled for my 3rd infusion on Tuesday.  We had already been delayed by a week because I had developed neutropenia (low white blood cell count).  So I had taken the week off from chemo in hopes of my body recovering.  I felt great.  My appetite was back and I ate plenty of cake.  When Monday rolled around and it was time for me to go in for my labs, I crossed my fingers that my numbers were all within range.

I checked in at the lab at Kaiser in South San Francisco.  I despise that place.  Because it is a hospital and open all the time, it's always busy.  There were tons of sick people as usual.  The line was about 20 deep.  Finally when it was my time to register, a little old man swooped in front of me.  He was having surgery that day so apparently he had a free pass to cut.  Whatever.  I patiently waited.  Finally it was my turn to register and I asked the clerk if oncology patients get seen faster than others.  He said not really, it was basically first come first serve, that they have tons of oncology patients and people fasting who are always bitching that they are hungry.  I was just curious.  No special treatment here.  I sat down in one of the empty chairs and waited to be called.  The tv above my head was turned on to the news and there was a story on about Trayvon Martin.  I played on my iphone and checked the time.  After about half an hour, I finally got called in for my blood draw.  As many times as I get poked, I will never get used to it.

I went home and in a couple of hours, my results were ready.  The thing I love about Kaiser is that they have a great website where you can log in and see your results.  You can email your doctor, make appointments, all sorts of good stuff. It's very interactive.  I was so happy to see that my numbers were all within range and I immediately emailed my doctor to confirm that we were on for infusion for tomorrow.  She responded within half an hour with the go ahead.

I spent the rest of my afternoon hanging out with my friend Jamie. I truly adore her.  Jamie was my roommate in a house we rented when I first moved to the Bay Area about 10 years ago.  Eventually we both went our separate ways but we always kept in touch.  It wasn't until I got sick that we started hanging out again but I realized what a true friend she is.  It was like we picked up where we last left off.  She is so easy to talk to and confide in.  She came over and I introduced her to Molly and Dash.  Jamie is also a cat lover.  We made plans to head on over to the theater to watch 21 Jump Street.  The movie was funny and afterwards we had some ice cream at Baskin Robbins.  I was sad for the night to end as I love hanging out with her but she had a plane to catch to Cancun in the morning.  I was jealous!

The day of infusion is never a big deal.  I can drive myself.  It's a 6 hour infusion so I always feel bad when someone wants to drop me off or come with me.  I'd rather go by myself, but I understand people wanting to help me out so I let them.  My sister came and her boyfriend came over to get me to my 9:45am appointment.  I took about 12 pills before my appointment.  They are mostly anti nausea and what not.  And since I wasn't driving, I went ahead and took an Ativan so I could sleep in the chair.  We arrive at Kaiser and I check in.  My nurse today is Clarita.  We look over my bruised arms.  I really don't want another horrible reaction to my right arm like when I had the Aredia treatment so we choose to put the IV in my right hand.  I cringe at the thought but I let her give it a try.  It hurts going in but I get over it quickly.  I'm all set and she starts the fluid.

In the chair, IV in place, ready to kick cancers ass!

I'm given some fluid, followed by a dose of Epirubicin, Cisplatin and then some more fluid.  My doctor has reduced the dosing by 10% so that we don't run into neutropenia again.  Surprisingly I don't turn on the tv the entire time.  I'm too busy on my iPhone facebooking, texting, and playing games.  I munch on some grapes and nuts, and curl up in my zebra blanket and fall asleep.  This time I only went to the bathroom 4 times.  Later in the afternoon I saw a young boy across from my chair.  He was a handsome Latino kid.  I was surprised to see him there.  Mostly all of the people I've ran into in the infusion center are older adults and some in their 40's.  I'm definitely one of the younger ones.  He notices me too.  I wanted to wave but I'm too shy.  It just made me think about how cancer does not discriminate.  It really just picks and chooses it's victims as it pleases.  Then a pretty, young girl walk out of the bathroom and finds her way over to the chair next to him.  I slump in my chair and close my eyes.  I was delusional for a moment.  A chemo romance?  She didn't look like his sister. I don't know.  Maybe I just wanted to meet someone who I could relate to.  His nurse hooks his IV up and closes his curtain.  I'm almost done anyways so I just relax and sleep.

After 6 hours, my sister comes to pick me up and we head home.  I'm feeling good.  I settle in at home and rest.  I hope that the rest of my week is good but we just never know.  My brother is flying in from Seattle the next day and I hope I'm not laid up in bed all week not able to hang out.

I wake up Wednesday morning and I feel great.  So great I can do cartwheels.  I start to question myself. I start to psych myself out that maybe the chemo isn't working.  I'm supposed to feel like crap, aren't I? My appetite is still in tact, which is unusual since I'm normally anorexic for about a week after infusion.  The next day I'm feeling ok, but not as great as the previous day.  I was feeling well enough to take an outing to Target and drive myself.  I've been feeling nausea so I'm taking Zofran and compazine regularly.  I have this strange heart burn and indigestion feeling that I haven't had before.  I double check with my doctor and she says to go ahead with Tums and Pepcid as needed.  They dull the pain a little, but I give in and take some oxycodone.  Then the pain goes away.  Damn it.  I have cancer pain.  I try to avoid oxy at all cost, but like my doctor tells me, this is not an endurance test.  I decide to take it easy and stay mostly in bed to avoid getting dizzy.  I just have this gross feeling inside me that makes me want to rip out my stomach.  And to make things worse, I have developed a cough.  It looks like my pleural effusion is back in my left lung.  Now I have to take my codeine pills to minimize those symptoms.

By Friday night, it breaks me.  I'm taking pill after pill to try to relieve my symptoms.  I question why the hell I am putting my body through this.  I don't feel good.  I cry.  My sister comes into the room and catches me crying.  Now I hate myself.  I don't like to cry in front of anyone.  I have to be strong.  I have to show that cancer is not making me weak.  In turn my sister cries because I am crying.  And now I feel like I am hurting her, when in reality it's cancers fault.  I tell her that I'm tired of feeling lousy.  I take an Ativan because I know that will help me pass out.  Cancer is a big jerk.

It's Sunday now and my mom has flown home to WA state for 3 weeks.  My brother is still here and my sister decides to take him out to Half Moon Bay for the day with her boyfriend and his son.  I decide to stay in since I'm not feeling my best and the sunshine can make me dizzy.  I sleep most of the time, waking often because I'm having hot flashes.  Molly is laying besides me.  Dash is in the living room passed out.  My apartment is quiet.  I'm feeling ok.  Just another 2 weeks of pill popping before my big PET scan and we see if this has all been worth it.  I'm super anxious.  This has to be working.

The best part of Sunday mornings, cuddling with Molly.

Genetics Testing

At my oncology appointment on Monday, my doctor had asked me if I was ready to meet with a genetics counselor.  When I was first diagnosed, she had mentioned this to me but I never really researched it. I qualified for genetics testing because the type of cancer that I have (diffuse gastric cancer with signet ring cells) is rare and because of my age.  So on Tuesday I got a call from the genetics counselor I would be working with.  She asked me about my family history and I had to name off not only my siblings but my parents siblings.  I had to provide age and any history of cancer.

I felt dumb because I could not remember how many siblings my parents each have.  Unfortunately, I do not know most of my family.  My dads parents are deceased but my mothers are still alive.  I have visited Mexico 3 times to meet my family (at ages 10, 15, and 17).  My dad has a couple of brothers in the Los Angeles area and luckily I know some of my cousins from there.  Other than that, I don't know my family.  Some of my other siblings do visit Mexico more frequently and know my family better than I do.  I'm jealous of everyone around me.  I feel like I missed out on getting to know my grandparents. I wish I had that relationship with my extended family that everyone around me seems to have.  And figuring out my medical family history has also been tough.  In Mexico, access to healthcare is limited and my family is not rich.  And when someone dies, there is no autopsy.  You just kinda bury them in a couple of days.

After we went over my family history, we made an appointment for me to come in and submit a blood sample.  She suggested I bring any family I could so I chose to come in on Thursday (3/22/12) so that my sister could take the day off and come with me.

Thursday came and we headed into San Francisco for my appointment.  I just remember sitting in the car, staring out the window, thinking about my life.  Genetics testing?  Why?  Why are we making a big deal out of this?  I'm no one.  I constantly struggle with the emotions that come running through my head about the value of my life and why it's worth saving.  We arrived at Kaiser and I registered for my appointment.  Shortly afterwards, the genetics counselor and the genetics doctor came out and brought us into an office.  We sat at a round table and again, we went over a little bit on my family history.  My sister was able to elaborate some more about family members who possibly had cancer.  Because they were my "mothers dads sisters daughters daughter," it made no significant link to my cancer.  We next got a little lesson in genetics.  Basically, my cancer is rare.  We are not sure why I got it and why I got it so young.  The importance of this genetic testing is to see if I have a mutation in my genes that caused this cancer.  If I do have a mutation in the CDH1 gene and we find that this is hereditary, it can help my family.  My siblings can then get tested also to see if they carry the gene.  If they do, they will be told the probability of them developing gastric cancer, which can often be anywhere from a 60-80% chance.  With that said, some family members may choose to have their stomach removed, which sounds drastic but in comparison to cancer, it doesn't sound that bad.  You can have periodic endoscopies done with biopsies but the thing about it is that precancerous tissue might not be biopsied.  You just don't know if the tissue being sampled will have cancer cells.  My stomach, apparently has cancer everywhere, hence the stage IV.

One website that has been a great source of information for me is www.nostomachforcancer.org.  Rather than trying to give you a genetics lesson, here is what the site has to say:

GENETICS

The CDH1 gene, located on chromosome 16, normally encodes for a protein called E-cadherin. The normal function of E-cadherin is to allow cells and tissues to adhere to one another. ⁴

The structure of the E-cadherin protein chain bends and turns. The normal function of E-cadherin is to allow cells and tissues to adhere to one another in a normal fashion.

When there is a mutation in the CDH1 gene, the function of the E-cadherin protein is disrupted, and cancer often results.^3,4 The exact mechanism by which this mutation ultimately causes gastric cancer is not entirely known. ⁴

Inheritance of the CDH1 gene mutation follows an autosomal dominant pattern, meaning that offspring of mutation carriers have a 50% chance of inheriting the mutant gene.^3,4 It is estimated that three out of every four CDH1 gene mutation carriers will go on to develop gastric cancer,³ with an average age at diagnosis of 38.^5,6

It is important to note, however, that not all HDGC families have a mutation in the CDH1 gene. Other genes that may lead to HDGC are not known at this time.

The results of my genetic testing will come back in about 3-6 weeks.  They may find that this is hereditary, they may not.  But it's worth a shot to check.  Anything to help my family out.  I would't want them to go through this.  The last part of my appointment was spent down in the lab, where they collected my blood to send off to the laboratory who does the actual decoding of my DNA.  It was a simple little blood draw but the next day, I developed a lovely bruise.  

I am eager to learn the results of the testing.  I asked the genetics counselor to give me a call when the results were ready and that I would come in so we can discuss them.  

So far my week off of chemo has been good. I noticed that I started developing a cough and some wheezing.  This is similar to the cough that I had before diagnosis (which was pleural effusion).  I basically have fluid that collects in my left lung and it makes it hard for me to breath.  This time around, it's very mild and taking codeine pills helps manage it.  I'm also back on Lasix (my diuretic) to see if I can remove the fluid in my lung and belly.  Monday I am headed back to the lab for blood work. If everything comes back normal, we will resume chemotherapy infusion #3 on Tuesday.  Keep your fingers crossed for me!

If you're interested in learning about my specific type of cancer, I encourage you to visit this link below.  It breaks it down very nicely.

http://www.nostomachforcancer.org/gastric-cancer/hereditary-diffuse-gastric-cancer