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.