5/14/12 Follow Up Appointment With My Oncologist

My name is Marta and I have terminal cancer.  There.  I said it.  I can't sugar coat it any longer.  Please do not tell me that things are going to be ok.  What is ok?  That I'm going to be cured?  I'm not.  If you mean that I'm going to live a happy life, then yes, that is ok.  But I can't sit here and listen to the bull sh*t any longer.  Needless to say, I had a bad day.  And maybe I'm just in one of my moods, but damn it, I'm angry. I never said being a cancer patient was always going to be sunshine and rainbows.  These are my confessions.  And right now, I'm going to tell you exactly how I feel.  I can't listen to people tell me that none of know when our time is up.  Yes, I know that.  I can get hit by a car tomorrow and die.  You can get hit by a car tomorrow and die.  But most of us do not have to go through chemo and cancer.  I would rather live my life not knowing when I was going to die than to live my life having an idea of when my time was going to be up.  I feel like I'm living on borrowed time.  I'm angry.  I feel cheated and robbed of my youth.  Of my golden years.  You get to make plans.  You get to have dreams.  I do not.  All day I kept making a mental list of things that I will never get to do.  I will never have children.  I will never get married.  I will never go back to school and become a nurse.  I will never....the list is endless.  And the things that I get to do are limited.  Plus I have to get them done before my body starts deteriorating.  So I have every right to pull the cancer card.  If I want to meet Barack Obama, then I should get to.  If I want to swim with the dolphins in Mexico, then I should get to.  If I want to visit New York City, then I should get to.  As time passes by, it makes me closer to my expiration date.  I'm like a damn milk carton.  I have a stamp on me, but it usually lasts a couple of days after that, give or take.  And sometimes that date is completely wrong because maybe we left the carton out on the counter way too long and the milk goes bad.

I woke up at about 8:30am this morning and headed over to the lab at Kaiser in San Mateo.  I had to do my INR test and also my pre chemo blood work.  I was hoping and praying my numbers were good enough to proceed with chemo tomorrow.  Afterwards I headed home and rested for a bit before I started to get ready for my 1:30pm appointment with my oncologist.  I got the results back from my INR test.  This test checks to see how thick or thin my blood is since I am taking Coumadin.  I was at 2.6, which is awesome because we aim to be between 2-3.  I started to slowly get my results back from my pre chemo blood work.  I could tell that the liver function tests had come back normal but I couldn't decipher the rest.  I would just ask my oncologist.

I arrived to my appointment and checked in.  I had my vitals checked and I actually gained about 3 lbs since my last visit.  I think it was all that coffee I drank.  Plus I haven't been taking my diuretic so I'm retaining a bit of fluid.  I sat in the exam room waiting for my oncologist.

My oncologist came in and I was all smiles.  I shook her hand.  She sat down and started to ask me all the basic questions we always run through.  How was my breathing?  Any mouth sores?  Any redness or blisters on my hands?  I told her about how I was feeling great.  So great that if I could do cart wheels, I would.  Then she told me that the results of my blood work was back.  My liver was doing great but my immune system was low.  We can't do chemo tomorrow, she said.  My heart sank.  I was so pumped up to get this show on the road and now we had to delay it.  I told her I didn't understand.  Why do I feel so good but my immune system says otherwise? She said something about my bone marrow and white blood cells and how chemo affects them.  All I knew is that chemo was not happening.  I had to stop taking Xeloda (oral chemotherapy pills) and delay chemo by one week.  I would let my body recover naturally and do blood work again to see how I was doing.  But I have my Seattle trip planned for May 22nd-29th.  No problem.  I'll do my blood work on the 29th and tentatively schedule chemo for Wednesday the 30th.  This is also the day of my next Aredia treatment so it works out that I'll get both at the same time.  Saves me time and a needle poke.  We next refilled all my medications and then I started to ask her the questions I had came up with in between our visits. 

Why did my hair fall out after the first treatment and now it's growing back while I am still receiving treatment?  I have strong hair.  Plus we have lowered the dosage of chemo since I first started so it's not as strong, giving my hair a chance to grow.

How long does Epirubicin and Cisplatin stay in my system?  It is in my body for about 3 weeks until I get my next chemo. 

Am I going to get a port? If I want one, I can get one.  If the needle poking is too much and the nurses/lab techs are having a hard time finding my veins, we can go with one.  But this would mean I would have to stop Coumadin and go on Lovenox shots.  No thank you.

Why will I be on Coumadin forever?  Because I will be on chemo for the rest of my life basically, and chemo causes the blood to be sticky, we have to prevent blood clots. Coumadin will "thin" my blood out so it flows smoothly.

I have a dentist appointment next Monday for a cleaning and exam.  Is this ok to proceed with?  I'll need to do blood work on Sunday to see if my immune system is up.  She doesn't want me getting my teeth flossed and have my gums start bleeding if my immune system is low.  

As an oncologist, do you familiarize yourself with alternative treatments that your patients would want to try to compliment their chemotherapy?  My cancer is a nasty bastard.  There are NO studies that show any alternative treatment cures my type and stage of cancer.  None.  Gerson Therapy?  No, it will not cure my cancer.  Even if we did surgery to remove my stomach, there will be cancer cells left behind floating.  They are nasty and will mutate and sneak their way around multiplying.  I cannot escape this deadly disease.  So anyone who believes in alternative treatment, that is great for you, but I do not believe in it and I don't want to entertain conversations about how someone has the cure to my cancer. 

This last question led me to one I wasn't planning on asking.  And as the question left my lips, I started to cry.  Why will I never be cured? I asked her.  My cancer, that nasty bastard, will find a way to outsmart chemo.  Yes, it's shrinking and I've got less cancer today than I did 4 months ago, but it's going to be a constant game.  Back and forth.  She did say that i'm doing remarkably well and that I'll be around for a while.  I know oncologists are not God and that they can be wrong, but I have accepted my prognosis. I have all along. What I need is for people to stop telling me that I'm going to beat this and that I'm going to be cured.  It just doesn't help my situation. You better believe that I will keep fighting.  I'm not giving up.  But I'm not going to sit here and tell you that I will live to be 70.  That's just not going to happen.  I don't know what I did wrong to deserve cancer or what I could have done to prevent it, but I have it and I just have to deal with it.  And I can't take it anymore when people tell me that God is testing me, or he doesn't give me what I can't handle.  God did not give me cancer.  I don't think he is rude enough to give me cancer just to get a reaction out of me.  I'm not going to pray for a cure or a miracle, I'm going to pray for peace.  I'm going to pray for happiness throughout my journey and for a spot in Heaven.  I'm tired of being sad.  I feel like I cried all day over losing my friend Marta.  And then I realized that she is me.  

After my appointment ended, I collected myself and headed on over to the medical assistants office so they could book my next appointments.  They asked me how I was doing and I lied, saying I was doing good.  I walked on over to the pharmacy to pick up my refills.  I waited in line and I fanned my face with a paper in order to keep the tears from falling out of my eyes.  When it was my turn, the pharmacy tech grabbed my prescriptions and started to ring me up.  I couldn't take it anymore and I just started to cry.  He could tell I was a cancer patient by the pills I was picking up.  He told me not to lose hope.  I told him I wasn't normally like this, that I usually was happy and positive but today was not a good day. Out of curiosity, I asked him what the retail price was on my Xeloda.  Xeloda is still under patent so there is no generic available.  For 63 pills, it was $1,795.  Wow.  Then I asked him to check my Emend (also still under patent), which is an anti-nausea 3 pill pack that I take the day of chemo.  $395.  I was astonished.  Thank God I have health insurance.   Cancer treatment is not cheap.  I ended up spending $80 on my medications and $20 for the office visit.  I was grateful that my sister had given me money to help with my medical expenses when she came to visit me in April.  I did smile at one point while in the pharmacy.  There was this lady standing next to me in line and she had a tiny puppy in her arms.  He looked like a golden retriever.  And he was wearing a black hoodie.  It was the most adorable thing I had seen all day.  I should have taken a picture.

I retrieved my car from valet and once I got in, I cried.  Tears just would not stop falling from my eyes.  I headed on over to a nearby shopping center, hoping that a little retail therapy would lift my spirits.  I managed to not cry in the store.  Then I grabbed some sushi and headed home.  My day had been completely thrown off.  I questioned my sanity.  Was I delusional to think that I could beat this?  I allowed myself to be angry, sad, and hurt.  I had to let it out.  I know that they're emotions that I'll feel throughout my journey and I can't ignore them.  I called my therapist and made an appointment to see him on Friday.  I need my safe place.  

I hope that I wake up tomorrow feeling like my old self again.  I am truly happy and normally I have a high spirit.  It was just one of those days where cancer was trying to bring me down.  And it did a good job of trying to break me.  But I'm not quitting.  I'm going to continue to fight, not matter what the outcome is.  If it buys me time, then I am grateful for that.  For now, I'm angry.  I'm not tolerating other people's shenanigans well right now.  People who complain about work are irritating me.  People who complain about drama in their love life are irritating me.  People waste so much time complaining about petty crap.  I wish they'd realize how precious life is.  Just take a minute and try to feel what I feel.  Try.  I wish I could come out and say JUST KIDDING but I can't.  My name is Marta and I have terminal cancer.   

The Hair Cut

I wanted to write about losing my hair, as I had no idea how it was going to be and I couldn't find any detailed accounts on how I should approach shaving my hair off.  Here is my story.

My first chemo infusion was on January 30th, 2012 and I knew that the side effects would cause me to lose my hair.  I loved my hair.  I mostly only styled it on the weekends and kept it simple during the week by sporting a pony tail.  This is what I had to say goodbye to.

I was told to expect hair loss about 3 weeks after my first chemo.  And boy were they right.  The weekend before I started chemo, I made an appointment to see my wonderful stylist, Tanya.  I wanted to cut my hair short so I could gradually get used to my hair changing and I also wanted to donate it before the chemo went into my system.  Tanya did an awesome job giving me a cute little cut.

My hair I donated to Locks of Love.

About 2 1/2 weeks after chemo, I had a tingly feeling in my scalp.  I was later told that this sensation is the hair follicle opening and closing.  When I would take a shower, I noticed I was losing a lot of hair.  When I would run my finger through my hair, I notice I was losing more and more strands. 

It was a Thursday when I started pulling on strands of my hair and I noticed they were just falling out.  I knew I wanted to shave my head and I was mentally preparing myself for this.  I knew that time was getting closer.  By Friday night, I pulled on more strands of hair and it just fell out with ease.  I told myself that I would shave it the following week.  I woke up the next day Saturday and I remember being in the bathroom and grabbing a good sized chunk of strands and tugging on them.  My hair just fell out.  My heart dropped and started to race.  OMG.  My hair is falling out.  I immediately texted my friend, Janet, and told her I needed to shave my hair off immediately.  I was really going to do this.  I hadn't prepared myself with any wigs, hats, or scarves, so I grabbed one of the few hats I had.  I made the 20 minute drive down to her and picked her up.  We drove over to Great Clips.  There were men sitting in chairs waiting for their hair cuts.  I walked up to the desk and the lady asked me what service I needed.  I'd like to shave my hair off, I said.  Excuse me? She said.  I need to shave my hair off; I'm undergoing chemo, I replied.  She checked me in and we sat in the chairs.  Within minutes, I was called over to the hair cutting station.  The man asked me what I needed and I told him I'm undergoing chemotherapy as I took a chunk of hair and pulled it off my head.  He suggested I go with a 1 on the clippers.  I agreed as I had no idea what I was doing.  He turned the clippers on and started to work.  I closed my eyes and tears started rolling down my face.  I wasn't crying because I was losing my hair.  I didn't care about that.  I knew it would grow back.  I cried because losing my hair was making my cancer journey more real.  I have cancer.  I'm losing my hair.  I have cancer? Yes, that's my reality.  He snuck some tissues into my hand.  When I was done, I opened my eyes and my hair was gone.  I had a shaved head.  Janet handed me my hat and I put it on.  I've never done this before.  I'll never forget you, the stylist said to me.  It touched my heart.  I went to go pay and he shook my hand.  We headed on out, I dropped Janet off as she had to go to work, and I headed home.  More tears rolled down my face.  

First pic I took after I shaved my head.

That afternoon my brother and his wife and kids arrived from Washington state.  Luckily my sister-in-law had knitted me some little hats and I was totally comfortable wearing those.  I had not been prepared for this.  I went to my closet and found some of my old winter scarfs.  I folded them neatly and they fit my head.  One thing I wasn't prepared for was the stubble that was falling off my head as it rubbed against my hat.  It was falling into my shirt and causing me to itch.  I needed to shave my head closer and I didn't know who to ask.  My dad gave my brothers hair cuts growing up so I could ask him to do it but I didn't want to cry in front of him.  I wasn't ready for ANYONE to see my shaved head but I felt comfortable asking my sister-in-law to do it.  We went into the bathroom and she shaved my head down to a zero.  Much better. 

The following week, I decided to order some wigs.  At first I thought I was just going to do scarves and hats but I realized that I wanted to blend in a little more with the rest of the crowd so I went with wigs, too.  I went to the American Cancer Society website and they linked me to their TLC site that sells hair loss accessories.  I ordered 2 wigs.  One was a keeper, the other one wasn't.  Luckily, I was able to return it for a full refund.  The wigs are synthetic hair and extremely affordable, about $40 each.  

About a week or two after I shaved my hair off, I decided to go even further and shave my hair off with a razor.  I had went into the bathroom and started to work on my head.  I couldn't see the back of my head, so I had my little brother who was visiting, finish the back for me.  It actually felt very cool.  It was weird.  I hadn't been this bald since I was in utero.  If I had to do it all over again, I would have shaved my head down to a zero then finished it off with a razor.  

It took me about a month to finally gather the courage to take a pic of my bald head and share it with my Facebook family.  

I was definitely not ready to go out in public with a bald head, and to this day I'm still not, but I have no problems sharing pics of my bald head or walking around my apartment bald with my friends and family.  I only experienced hair loss on my head.  None of the hair on the rest of my body fell out.  I was happy to keep my brows and lashes.  And just a FYI, my chemo cocktail that caused my hair loss is Epirubicin, Cisplatin, and Xeloda.  My hair started to grow back but I noticed it was very thin and spotty, not growing all over my head.  It looked very fuzzy to me.  So when my sisters came to visit in mid April, I had them help me shave it off one more time.  Today, 3 weeks later, I'm having awesome hair growth.  I'm not sure why chemo causes hair to fall out initially only to grow back during treatment. I can tug on my hair and it is stuck on my head.  I'm going to ask my doctor about his.  And I've decided not to shave it off anymore.  I'm going to let it grow long!

Three weeks worth of hair growth! 

I currently have 6 synthetic hair wigs in rotation. I like being able to take a quick shower, do my make up, and slip on a wig.  I'm ready in no time.  Being bald is really not that bad.  When I'm out in public, no one stares at me.  You can't tell I'm wearing a wig and I've actually gotten compliments on my hair cut. I'm having so much fun with the wigs.  There is a lab tech over at the Kaiser in San Mateo that I like confusing with different hair styles.  We joke around about it.  

I'm trying to gather the courage to debut my bald head.  I'm not ready to walk around the grocery store bald, but I'd like to start off by going to my next chemo appointment (which is this Tuesday, May 15th) without my wig on.  And I'd wear my Wonder Woman shirt.  What do you think???

Expiration Dates

Sometimes I wonder if my life would be easier if I just had an expiration date stamped on the bottom of my foot.  There are so many unknowns.  Do I sit here and listen to statistics?  Do I listen to what my oncologist thinks my prognosis is?  Or do I choose hope?  Do I choose to believe that only God knows what my destiny will be?  It's taken so much to choose to be happy.  To choose to have hope.  To believe that my life is in God's hands.  But how do I deny that there is no cure? I know that doctors can be wrong and that people beat cancer everyday but am I delusional to believe that I will be the last man standing?

It's hard to think that you only have so much time left.  It's still hard to this day, even after all the pep talks I've given myself about not giving up hope.  I push it out of my mind and tell myself that I can do this.  But you know what, I'm not going to think about any of that.  I'm just going to live my life day by day.  I'm going to fight cancer with everything that I've got.  I'm not going to quit.

This evening I met with a friend of mine, Dennis.  I met Dennis a couple of years ago through my work.  He is super easy to talk to, always happy, and has a great sense of humor.  Last year, I created tension in our friendship and we didn't talk as much anymore.  Then after I got diagnosed, I sent him a text telling him I was sick.  He acknowledged me but we didn't really keep in touch.  A couple of days ago, I was thinking about him.  I missed him.  He was a good friend to me.  I sent him a text, a smiley face.  He sent one back.  I told him I was still alive!  I wanted to see him and we made plans to meet Wednesday night.  After he got off of work, he told me to meet him at a Starbuck in South San Francisco.  I put my best wig on and head out.  I made it to Starbucks and he came out to my car.  We just sat in my car talking.  He asked me about my journey.  He kept telling me how surreal it felt.  I know, I told him. You take one look at me and you would never believe that I'm a stage IV cancer patient.  I wish I could tell you just kidding, I said, but I can't.  Dennis made me laugh.  He made my heart smile.  I still have those old feelings for him, the ones I had when I first met him.  But this darn cancer is in the way.  I know Dennis will always be my friend and will be here in my journey, but I can't help but to feel robbed and cheated of my future.  There's that expiration date lurking again. Sometimes I just don't know how to shut the idea out of my head.  But I have to treat it like every other scary emotion that I feel.  I have to know that the feelings are temporary and that they will pass.

I feel great.  I look great.  I'm kicking butt.  So how can anyone tell me when my expiration date will be?  It's like a pill.  A pill with my expiration date on it.  And it's in my mouth but I won't swallow it.  I refuse to.  I won't.

So take a look at the girl below and you tell me if she looks like she's sick.  I don't think she's dying...she's just living with cancer until she can kick it for good!

I realize that a lot of my readers are not on my Facebook and I wanted to start sharing my videos here.  I want you all to see that I am happy and that I'm not forcing it or faking it.  Enjoy!