Lump of Coal

I was actually a little excited to head to my chemo appointment today.  Still soaring from the high of the tumor shrinking, I couldn’t wait to get started on a drug regime that would continue this progress.  After all, progress this good needed a swift kick in the butt to keep going.

Sadly, upon arriving I discovered I was meeting with Dr. Brooks’ nurse practitioner.  Until the phone call yesterday, I really didn’t like to work with her.  I remembered why within seconds of our meeting today.  As always, she only knows what little he tells her –which, I admit, is his fault too– and she rarely has the answers to my questions.  She didn’t know how long he planned to keep me on this chemo.  She also didn’t know what our next plan would be if this didn’t work.  To make matters worse, when she brought up my MRI results the difference she had told me over the phone was incorrect.  My tumor had not shrunk two centimeters on all sides.  In fact, it shrunk barely a half centimeter in one direction.  Upon reading the results, the radiologist stated there was a “slight” decrease in the size of my tumor.

That was the first strike of the day.

I was completely disheartened with that information by time I plopped into a chair in the chemo room.  My tumor had not miraculously started to disintegrate.  I was frustrated and disappointed; I felt especially let down by Linda’s inaccuracy in passing on details from an MRI result.  It was grossly misrepresented to me over the phone and the relief I had felt from yesterday was washed away.  I had literally laid down last night and cried a little saying, “I’m going to survive!”  Now I felt as if I had been sucker punched and the question of my mortality was still hanging in the balance.

The nurse, not Carla, drew my labs and we set to waiting.  About five minutes in, Linda and another woman arrived to talk to me.  Apparently, they had not worked out the details of cost and coverage for my drugs despite having more than a week to do so.  When they called my insurance company today to demand an answer, they found the office closed for the holiday.  When they called the drug company to see if I would qualify for their replacement program, they scoffed at how much Milo and I make and said no go.  I could file an appeal, but there was no guarantee.  Meanwhile, if I wanted to go ahead with the dose today, I would need to at least make a down payment and hope my insurance would cover the rest and reimburse me for what I paid.

Who thinks that sounds unlikely?  Yea, so did I.

They decided that we’d try to get poor Dr. Brooks on the phone while Milo, Malika and I went to find something to eat.  No one wanted to pay the chemo bill today and they wanted to know what we should do in case the companies never work out the cost.  (For the record, I am not being cheap here.  The chemo treatments are projected to cost about three thousand dollars each!)

Just before we left, Malika let me open the Christmas gift she and John bought me.  It’s a Kindle Fire “so I no longer have to lug my extremely heavy laptop” to chemo.  I burst into tears at how nice she and John are.  I couldn’t believe that one of my friends, especially one in school, would spend so much money on me.  I honestly couldn’t even get the thank you out, I was crying so hard.  I did a lot of crying today.  Damn acute emotions!

We went to lunch and tried to find a case for my new toy while they worked out the fine details of chemo.  It was a few hours before Linda called to tell me Dr. Brooks’ decision was to put me back on my old regime (the cisplatin/Gemzar) this week and start the new stuff when  I return in January.  I didn’t like that idea.  I haven’t been on chemo for five weeks as of today.  The tumor hasn’t grown.  It really hasn’t even shrunk based on the numbers I saw in the report.  Sure, we weren’t losing ground, but what is the point of dumping highly toxic chemicals into my body in hopes that two weeks from now they’ll all have their acts together?  It’s Christmas, for goodness sakes.  I want to enjoy it!

I don’t know if this will be my last Christmas.  In fact, I said the other day that the only thing I really wanted for Christmas was a cure so that I could be here fifty more Christmases.  I want to get better, but I also know that I have to live the days I know I have.  I have today, the day of our Christmas party.  I am fairly certain I will wake tomorrow and Sunday for the holiday.  Next week, we’re have plans for New Year’s Eve.  I want to enjoy all of that and I can’t with the Cis/Gem.  I know that those drugs will make me sick, possibly as bad as I was back in August for the first dose.  Who wants to spend their holidays like that?

Against the advice of Linda and Carla, but with the backing of my husband and Malika, I decided that I wasn’t going to let them treat me with something we knew wasn’t really working.  In two weeks, we can try again and if they still haven’t sorted things out then I will let them treat me as they see fit.  Until then, I’m going to enjoy this Christmas with my family and trust that God and my body will work with me on this.

It might not have been the right decision, but it was mine.  I pray the consequences are only an irked Linda and Dr. Brooks.

 

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Best Christmas Gift Ever!

This news has already been announced via multiple outlets –thank you Facebook, text and cell– but for those who don’t have access to me via those, here’s the deal.

Last Friday I had another MRI, which I am become quite comfortable at.  I know the process well enough that I could probably sleep and do the breath holds.  I know in advance to pick out what music I want to listen to, not to wear any metal, to leave valuables at home.  I know I can go through the whole process without a sedative and can, therefore, drive myself home and won’t need to depend on a ride.  Yup, I’m a pro at MRIs.

I figured I wouldn’t hear from Dr. Brooks or Linda (his nurse practitioner) because I had an appointment this week.  I like seeing my MRIs and they usually review them with me as they hand me the report.  Plus, I hadn’t really expected any real change.  Worse yet, I almost anticipated that the five weeks of chemo free life I had been allowed would bite me in the butt.  Yes, I expected my tumor to grow.

This, complicated by the emotions of the season, created a decrease in my positivity.  I was throwing myself into making memories and having the best Christmas ever, just in case this was my last.  I wanted Milo and our families to have good things to recall about this year besides the monster of a tumor living inside my liver.  When confronting your mortality, it is insanely hard to remain both optimistic and enjoy the excitement of a holiday season.  Heck, it’s hard to enjoy a lot of things sometimes.  Other times, the emotions reach a place you didn’t even know existed.  I tried to explain this yesterday to Milo.  I feel emotions much more deeply than I did before.  The highs are much higher and the lows are bottomless.  It’s not much fun to ride a roller coaster between those two variants.  It’s physically painful.

Today, it was happy pain.  While sitting at my desk, my cell lit up with Dr. Brooks’ office number.  I had already had the call reminding me of my appointment tomorrow, so I wasn’t sure what they would have to say.  I hoped it would be good news about the insurance paying for my new chemo since that is a bill I really hope never to see.  Instead, it was Linda telling me that Dr. Brooks insisted she call me with the results of my MRI.  So she did…

*drum roll*

THE TUMOR IN MY LIVER HAS SHRUNK!

Yes, I do feel that required bold, italics and caps.  It’s a big deal!

What started, she said, as a ten centimeter by eight centimeter by six centimeter (10x8x6) is now an eight centimeter by six centimeter by three centimeter (8x6x3) tumor.  I drew it out and it is a really big difference!  I was so excited that the second the call disconnected I skipped from my office to the front desk to tell my friend Laura that it had shrunk.  I then skipped back, called my husband, my parents and his parents.  I posted on Facebook, my cancer message board, my charity site and sent out a load of text messages.  No, I clearly wasn’t excited.

My parents cried.  Milo asked how it shrunk without chemo.  I point out this: why look a gift horse in the mouth!  I don’t care why it shrunk, it did and that’s the focus I have right now.  His parents and sisters were equally as excited.  This is truly a Christmas miracle!

Thank you, Lord, for this gift.  Thank you Dr. Brooks for making her call me.  Thank you all for the prayers and kind thoughts and words.  He is listening.  It is working.  Let’s not stop now!

We are going to beat this together.

In Other News

One line from 50/50 resonated with me best: I just want this to be over; I’m so tired of being sick.

I’m certain I am not the only person that feel this way.  Besides thousands of other sick people struggling daily, I know my husband, family and friends would love it if I could just be healthy again.  I’m sure Milo misses having some semblance of a sex life –sorry Moms and Dads– but between lack of desire and energy, it’s just not really there.  I totally understand why some people are driven to cheat on sick spouses. I offered Milo a hall pass, even tried to talk him into it to assuage my own guilt in the matter. No go. I’ve got a good one.

Still, life in general is a moment by moment experience lately.  Will I have enough energy enough to make dinner tonight?  Will my digestive tract cooperate and keep dinner down?  Will there be heartburn (which I find is best treated with chewing gum or sucking on a hard candy)?  Can I plan the trip to the summit or will there be chemo?  Heck, will chemo work?

Besides those closest to me, I also know that work is starting to get a bit antsy about my return.  The Performance Improvement (henceforth PI) department has made it abundantly clear that the best they can do for me is twenty-four hours a week right now (and probably for the foreseeable future.)  As much as they have started to count me in as “one of their own,” I am really just a lender employee.  Almost a temp.  Lanita loves having me around to help her out, but my position is not permanent or sanctioned by the powers that be.  She’s been called by administration to inquire about my working with her and I imagine it’s just a matter of time before they tell me I have to go back to floor nursing.

Understand, I love being a nurse.  I trained for it and it is what I want to do.  I want to go back.  However, I am cognizant of my limitations.  I do fatigue more quickly and there are days that I have some pain.  I often need to sit more frequently when doing activities.  It’s apparent that I will not go back to the soccer team playing the way I did or working out at the gym with the trainer at the level I was.  I will also not be able to do three twelve-hour shifts in a row.  I will have limited days I can work while doing chemo.  Doing a thirty-six hour work week as six six-hour shifts is also out of the question.  Too many days of work.

I don’t want to be forced back on the floor before Dr. Brooks and I agree that it is best for me to do so.  I know my manager wants me back.  My friends on the unit want me back.  Heck, I want to be back.  The decision to go back, though, shouldn’t be forced on me and my oncologist.  What if this chemo causes my white count to drop worse than cisplatin did?  What if it saps my energy more?  How am I going to be a beneficial employee then?

It’s not just the call from administration that worries me either.  The PI manager commented that she is “doing (her) best to keep (me) at twenty-four hours.”  She asked that I take on stealth hand-washing observations (making sure nurses use hand sanitizer or wash their hands) and only do sixteen-hours of chart audits a week.  I’m fine with that.  Eight hours of being up and around might help me get back into moving more.  It would be a good way to test my stamina (sort of.)  I’m all for it.

No sooner did I hear that from PI than I received a call from Jo, the woman who found me the position in PI.  She works in employee health and said she was calling to check up on me.  Then, she asked how chemo was going, when I would see the doctor again and how things were looking.  She asked me to call her Friday after I spoke to Dr. Brooks…and said that as soon as I had the release to go back to the unit I should see her so we could get me back on the floor.

Wait…what?

Yes, that is why I am worried now.  If employee health is calling to find out when I am going back to the floor, something has to be in the works.  Clearly, I’m wanted back on the unit as soon as humanly possible.  Like, last week if it could be done.  Wonderful.

50/50: A Cancer Patient’s Review

Warning: this post contains spoilers and details about the movie 50/50.  All readers have now been officially warned.

Don’t worry.  I’m not going to turn this blog into another current events and movie review blog, but after seeing 50/50 last night I felt it was relevant enough to be posted here.  When I was first diagnosed with cancer, I immediately started categorizing movies into ones I could still watch and ones I couldn’t.  Among the list of “not viewable” were Terms of Endearment, Beaches, and Steel Magnolias.  Too much death and sadness to be good for me.  I needed uplifting and inspiring films…or at least stupid-humor comedies.  Something to distract me from what I am living through.

No sooner did I start jotting down my emotional upheaval than Hollywood was abuzz with a film about to premier.  Based on the true story of Will Reiser, 50/50 was a young adults journey through a cancer diagnosis.  Wait…what?  Hollywood was taking on something big and real?  They weren’t going to sensationalize it at all?  That didn’t sound right.  Yet, that didn’t matter either.  It was on the DO NOT VIEW list of films for me the second I heard about it.  I didn’t need to know what it was like to be a young adult with cancer; I am a young adult with cancer.  I go to movies to escape my reality, not suffer through it further.

Before long, the movie was out of the traditional theaters, but that didn’t stop me from thinking about it and wondering how well it was done.  Too many movies throw cancer in as a plot device without actually showing the true effects to the patient and family.  It’s something that tugs at the heart, but the real scope of its destruction is underplayed.  I wondered if 50/50 would be any different.

Then two things happened: Will Reiser was announced as a guest at the cancer summit I want to attend in March and 50/50 was released to our cheap theater here in town.  For those unaccustomed to cheap theaters, they release some of the films from the larger chains about three to six months after they have been on screen (usually just before the release to DVD).  They also cost about two bucks a person to attend instead of seven to ten.  Much more budget savvy for those films you aren’t sure are worth the horrendous prices of a theater.  Malika and I had talked off and on about seeing 50/50 since we heard about it, but now that the cancer summit had the man behind the movie attending, it seemed impossible not to view the film.  How could we appreciate him without knowing his story?

For the record, there’s a reason we have gut instincts and should listen to them.

I was nervous when we arrived at the theater; could I really handle watching this play out?  The answer is no, I couldn’t.  Several times I was tempted to flee the theater and my leg bounced so much I’m surprised I didn’t launch from my seat.  I cannot remember a single scene that didn’t have me crying so hard that I was hiccuping.  Milo was awesome throughout, holding me and handing me tissues, but I was so incredibly lost to the film.

Maybe I should explain.  In the film we meet Adam, a twenty-seven-year-old man who is super neurotic.  He won’t drive a car because it is the fifth leading cause of death (ironic, no?) and he seems to be big on the neat, organic type things.  Every morning he jogs.  He has this great appearing life: a sweet girlfriend, a good best friend and a job he likes.  It’s perfect…except for the incredible back pain that won’t go away.  He ignores it for a while, but eventually he caves and sees a doctor, expecting a muscle relaxer.  Instead, he gets the following news: he has cancer in his spine and only a fifty percent chance of surviving.

No, I don’t see any similarities in our stories.  I don’t know what you are talking about.

Anyway, Adam then begins the adventure of chemotherapy and counseling.  He shaves his head to keep the chemo from causing it to fall out.  He learns his perfect girlfriend is actually cheating on him, despite the fact that she chose to stay and help him through the cancer.  His best friend wants to use his cancer to help them both have all the sex they could want (by the way, the R rating was well earned due to language).  Just when things seem to be at the absolutely lowest, Adam is told chemo isn’t working, the tumor is still growing and the only hope he has to survive is a surgery that might kill him.

Suddenly driving looks a whole lot less scary, no?

Again, I pretty much cried from the moment he was diagnosed until the end, even though I assumed our dear Adam was going to live since…well, Will did.  I didn’t just understand what Adam was going through; I was Adam.  Unfortunately, my experiences completely blurred my ability to tell if the movie was good to an outsider.  What I can tell you is that as a person who is battling this disease, the movie was dead on.  If you want to know what a cancer patient/survivor is going/has gone through, this movie will do it for you.  I knew what it was like to go into tunnel hearing mode where you hear nothing but the word cancer over and over in your head.  In fact, I still sometimes catch myself thinking “I have cancer. I have cancer. I have cancer.”  I know what it is like to feel so angry that you want to scream, hit, kick and bite someone or something just to feel better.  Of course, there is no one to pummel.  There is no victim of the violence, because the cancer is invisible and you can rage against it all you want but you’ll never hurt it.  I’ve sat through the slow drips of chemotherapy, the side effects that make you ill.  I’ve heard the “You don’t look sick.” and all the other advice and words meant to make me feel better.  I know they don’t work.  The doctor has told me my chemotherapy isn’t working and we need more options.  I deal every day with the truth I might die and I’ve watched all the people I love ignore that same truth because it just hurts too much to deal with it.

I am Adam.

Well, that really sucks.

For me, the movie was a chronicle of my journey too.  Joseph Gordon-Levitt did an amazing job playing Adam.  Will Reiser’s script was near perfect.  The music choices were extremely well done.  My only complaint had to be the amount of foul language –I curse, I’m not perfect, but this bordered ridiculous– and the let’s use the cancer for sex purposes.  I don’t know if that is how others have dealt with this, but I sure know I didn’t.  I also feel like this film would have been completely different if the main character was a female in the same age group.  There would have been more discussion of fertility and life after cancer.  I know for me, that was a huge issue.  I wanted to know the dreams Milo and I had for a family wouldn’t be crushed because of the scary C-word.

I also feel like there were other parts missing.  Yes, it is a movie and they have limited time to cover the entire range of suck-itude from cancer, but while Adam was very clear he understood he might die, and very angry from that, I feel as if they cut short his reaction to it.  I know perfectly healthy people with a bucket list, but Adam didn’t seem to have anything he wanted to get done before he died.  He lived a lot in anger and denial, but that was about it emotionally.  I know I am female and all, but I can’t imagine I’m the only one that occasionally delves into self-pity and cries.  Grief is part of cancer for everyone, even survivors.  I would have liked to see more of his dealing with that and less of them attempting to pick up random girls at bars.

All in all, it was a good movie; Malika, Milo and Jeff seemed to appreciate it, even if it was depressing and made them cry.  Adam does live, for those who are wondering but won’t see the movie.  As I said, the movie is based on Will Reiser dealing with his own cancer diagnosis.  I wasn’t really surprised that Adam made it through mostly unscathed.  I could totally see nursing and medical schools using this film to educate students on being a patient.  For that purpose, scenes were dead on.  For me, I don’t know.  Watching it again now would be far too difficult, but I could see it being in my movie collection to remind me of the time I fought and won (because I will win.)

So, I’ll give 50/50 two thumbs up and a box of Kleenex.

Seriously?

No sooner did I pack up my things at work today, than my cell phone rang.  I wasn’t surprised to see it was Dr. Brook’s office at first since I thought I had an appointment tomorrow and it was calling to remind me.  It wasn’t until I started talking to the woman that helps with the insurance and billing there that I realized my appointment is next week.  The last time I spoke with Wanda and Bonnie, they were trying to get my Lupron approved.  This time, they’re trying to get my irinotecan past the insurance.

Why?  Apparently irinotecan is normally used in colon and rectal cancer.  Mine is neither of those.  It is, however, sometimes used in other cancers off-label.  Insurance doesn’t like the term “off-label.”  Worse than that, they usually refuse to pay for off label.

On a drug that you take rarely or even a daily drug that doesn’t cost a fortune, this wouldn’t be as much of a problem.  With chemotherapy agents, they cost thousands of dollars most of the time.  My Gemzar and cisplatin was marketed at seven thousand dollars, most of which was written off when my insurance offered them a mere thousand dollars towards the bill.  I’m not sure what this drug costs, but I can’t imagine it is cheap.  Wanda said that if the insurance doesn’t pay for it, there is still one other method we can try.  Sometimes, they use the drug anyway and the company will send them more of it for free in special cases.  For that, however, we’d have to qualify financially.  I’m really nervous that we won’t qualify since I make so much money as a nurse.  When I looked into financial assistance for the cost of the Lupron, I made too much money to qualify for anything.  I’m pretty worried that this will be the same thing.

I’m not sure what the options are if the financial assistance or insurance doesn’t work.  If the insurance company does deny the treatment, I feel like they are saying “I’m sorry the first line drug didn’t work, but you should go ahead and die since we don’t want to experiment with something that might.”  I’m so damn frustrated with how things progress sometimes.  Just when we have something that could work, we’re thrown a curve ball.  How is that fair?  How much more am I expected to deal with before we just take care of me and my disease?

Well, Thanks for Trying…I Think.

I have cancer.

This is a fact, one I cannot deny nor never will.  For the rest of my life, I will have cancer.  Even when they tell me my cancer is “in remission” –which I truly believe will happen because I have to believe it– I will still have cancer.  It might not be visible, but it will be hanging over me like a dark cloud.  I will always have to monitor for signs of it.  Cancer doesn’t really go away for patients who do not have the surgical option to cut it all out (and even then not always).  It is what finally kills a cancer patient.

Maybe because of this, maybe because I just have found myself reading more in general, I’ve noticed a lot of articles about cancer and forums to discuss cancer in.  Did you know there is an entire website to people dealing with and surviving cholangiocarcinoma?  Neither did I…and I’m still working on finding a lot of survivors.  Most posts are by family members.  There are also a ton of articles about people faking cancer for money.  That appalls me.  Sure, I’d love a bunch of money coming my way, but I still have only asked for people to donate to my cancer charity I’m Too Young For This!  I want them to continue to provide support, education and research for cancer survivors (because even if you are fighting it the group believes you are surviving) my age.  Hit the link on the side if you can support them this season.  I’m in third place among team members raising money for them!

The articles and blogs that attract me the most, though, are the ones that discuss responding to cancer patients.  In nursing school, we are required to learn how to talk to patients.  Don’t give too much personal detail, but be friendly.  When they are diagnosed, don’t use the “I know how you feel” or other such comments that trivialize their pain.  Let them talk, just listen.  Things that make sense, but most people don’t do because we feel like we need to say or do something to make them feel better.  For the record, as someone who is now going through being “the patient”, many things that are said are less than helpful.  I thought I might point out some of the things I have heard and how they affected me and then link you to further articles about the subject and some things that might be more supportive.

“God never gives you more than you can handle.”
God is awesome, I’ll admit it.  Somehow, some powerful being created some of the most amazing things.  Even taken into account my belief that evolution and God’s hand both created man as we are today, I am still amazed at the result.  Seriously, our body works so perfectly and everything in it is dependent upon something else.

That said, I heard this particular comment often and sometimes too much.  I never found it to be even slightly helpful.  For the first few days, heck even now occasionally, I found myself really angry with God.  What kind of “loving father” does this to anyone?  If He gave it to me to handle, how about He go ahead and take it away now?  I’ve learned my less.  I’m sorry.  I’ll do whatever He wants me to do if I don’t have to deal with cancer anymore.  I, also, never really felt like I was handling anything.  I was a person with cancer, but I never really handled it.  I ran through stages of grief, remained comfortably in denial and have no plans of moving elsewhere thank you very much. 

Suggestions on what to say: I’d settle for an “I’m sorry you’re going through that” or even “If you need to talk, I’m here.”  I accept prayers and I pray more now that I probably have in years, but telling me that I’m like Job being tested…well that just makes me mad.  I’m done handling this now.

“Everything happens for a reason.”
As lovely as it is to know that there is some reason I have been blessed (sarcasm intended) with cancer, it really doesn’t help to have that pointed out to me.  I don’t know what I am supposed to learn from cancer, except the joy of the side effects and multiple neoplastic drugs that can torture my body, but whatever it is I much rather would have learned it through a text-book or something.  Much like the above, all this does it make me go “What reason?” and get angry that I had to learn anything in such a way. 

Suggestions on what to say: Like above, I’m sorry goes a long way.

“We could all die tomorrow.” or “I could be hit by a bus tomorrow.”
This comment always bothered me a little as it made me feel like I was making a big deal over nothing.  Then I realized, cancer isn’t nothing.  I can and will die from it; perhaps not this time, but at some point I will end up fighting this disease again…and again…and again.  Cancer goes into remission; a few lucky people have surgery and are rid of it for good.  My type, unfortunately, was caught too late for that pleasant option.  I will fight this for the rest of my life, however long that may be.
 
It wasn’t until my husband uttered these very words to me, however, and an article written by another cancer survivor gave me voice that I finally had enough.  The woman writing the article pointed something out: the actual odds of my dying from the disease in my body are significantly higher than those of anyone being killed because they were hit by a bus.  Yes, many people die in accidents everyday, but the number of people who die from cancer every year surpass that.  As I also mentioned, it also belittles what I am going through.  We all could die tomorrow, but it isn’t something that is following you everywhere you go.  Everything is tainted by the thought that this might be the final whatever…
 
Suggestions on what to say: Same as above or nothing at all.  Sometimes, especially when I get into the depressed “I could die” mood, listening is best.
 
“I know exactly how you feel.”
No, you don’t.  Unless you’ve had cancer, you have no idea how this feels.  I’ll even extend that to any other fatal disease, but because you had family that went through it or some treatable ailment, you have no freaking idea what this feels like.  Until someone dumps toxins into your blood to treat you, you have no comprehension.  The side effects are terrible.  I wanted to die the first week I had the cisplatin and Gemzar.  You don’t know what it is like and I pray you never do, so please spare me the time you broke your leg or had your gallbladder removed.  So not the same thing.
 
Suggestions on what to say: Ditto above.
 
What can I do to help?” or “Let me know if you need anything.”
I will confess I originally thought these were harmless, but I never knew how to respond.  How do you say “Could you please clean my house?  My husband is super busy with work and school and some days my energy is just enough to crawl out of bed.”  Oh…I guess just like that.  Still, for me and Milo who are very independent, it is really difficult to ask for help, especially with things like shopping or cleaning.  We want to do it ourselves and we don’t want to depend on others.  Plus, you already hate to clean your own house, why would you want to do mine too?
 
I’ve seen in several places that other cancer survivors also have this problem.  They know that at some point they may need money, cleaning and meals.  They don’t, however, know how to ask for these things without sounding rude.  Instead, they shrug and say they’ll let you know (I am totally guilty of that!)
 
Suggestion on what to say: Either make a direct offer (“Hey, I’ll come vacuum on Tuesdays and Thursdays!”) or just go ahead and do it.  It saves us both the awkward moment of not knowing what to say.
 
“You are so brave/strong.” or “I don’t know how you are handling this so well.” or any phrase like it.
I am not brave, I promise you that.  I scream at the sight of spiders and roaches.  I hate snakes.  I do love my horror movies, but sometimes I watch those from behind my fingers.  I am not strong; I cry for no reason and can be quite miserable about this situation.  I promise, I am not handling this well.  I have completely disassociated myself from my disease and am quite clinical about it most of the time.  I’m coping and I’m doing the best I can but if I could choose not to have cancer, I promise I would.  I’d give it up in a heartbeat.  I’d take people up on their offer to struggle through this for me.
 
Suggestions on what to say: See all of the above (because really, those things are the best things to say to most of us going through this.)
 
“So and so in my family died from cancer.”
Thanks.  I’m so glad that you are giving me a detailed list of people who have died from cancer.  I needed the reminder, really.  The only time talking about people who had cancer is when they survived.  For instance, Malika’s boyfriend survived cancer.  My friend Geoff survived cancer.  Cancers that doctors weren’t sure they’d survive.  These are good stories, positive tales that remind me miracles happen.  I need those; I need the hope they provide.
 
But for the love of God, I don’t need reminding that I could die.  I’ve got that one, thanks.
 
I’m not going to remind you what to say instead 😉
 
“Just stay positive.”
This one makes me sigh.  I try to stay positive; I try to go about what little of my life I have control over with a good outlook.  It’s not easy and I slip sometimes.  I am allowed to slip!  I am allowed to be jealous and bitter, angry and depressed.  I’m allowed emotions other than happy and positive.  Negativity didn’t give me cancer.  Sarcasm didn’t give me cancer.  DNA did and positive will help, it gives me the urge to keep fighting, but I really need people to understand it’s exhausting to go through this and to stay positive all the time.  Please let me mope, be supportive and silent during that time if you don’t know what to say.  Let me cry.  I’ll bounce back if you give me time.
 
“You are going to survive this/I know everything will be fine.”
No you don’t and I might not.  I’ve pointed that out enough and have said it in response to both of these.  I may die.  I’m sorry if that scares you or upsets you, trust me I’m not really throwing a party over that thought either.  But please, please, understand that as much as I want to comfort you, I can’t.  I can’t smile and nod politely at this one because we all need to be ready for all possibilities.  I’m sorry.  I don’t want to have cancer either.
 
Now, I’m sure some of this sounds snippy, and I’m sorry.  I also will admit that some cancer patients hated hearing things that I loved hearing.  I loved when people said “You lost so much weight and look great.”  I’m overweight and a tumor proved, in the beginning, to be a rather interesting diet plan.  I joked as much with people.  Others, I have read, took offense.  Some even took offense to hearing people say they were praying and sending positive energy.  I never did; every little bit helps you know!  I’m hoping for a miracle; the more asking for it the better.  While I also love research and will accept info on alternative treatments, I am not going to read a book that says I need to boil potatoes in water and drink that water afterwards.  In fact, I’ve heard too much starch increases inflammation and possibly feeds cancer.  Your input is great, but please understand I get a lot of suggestions…too many sometimes.
 
For those interested in more information about what to say to friends and family with cancer (and probably other terminal illnesses), I found some of the best things via my cancer support group and on Google.  The Salon just posted an excellent article (http://www.salon.com/2011/12/13/how_to_talk_to_someone_with_cancer/) and Care2 had another very helpful one (http://www.care2.com/greenliving/what-not-to-say-to-someone-with-cancer.html).  Some of my fellow bloggers have some funny (and sometimes inappropriate) posts about the subject as well.  My favorite can be found here: http://www.kevinmd.com/blog/2011/12/person-cancer.html)  The author of that had breast cancer and keeps a blog called “But Doctor, I hate Pink!”  And, not that I want gifts, if you do know someone you haven’t shopped for this Christmas season and they happen to be a cancer patient, Huffington Post had a great article about gifts for patients (http://www.huffingtonpost.com/red-room/best-gifts-people-with-cancer_b_1116827.html)
 
Now, fellow survivors, we’re not innocent either.  Sometimes we don’t know what to say to people about our cancer.  How do we ask for help and what can we do to broach the subject with family.  I’m sure I was horrible when I blurted out “I have cancer!” to my poor husband.  If you need some advice, Salon strikes again with a great article on it found here: http://www.salon.com/2011/12/14/how_to_talk_about_your_cancer/singleton/  No more excuses!
 
So there you go, now everyone can try to communicate more efficiently and without hurt feelings.  Aren’t you glad I found all of this for you?

The New Plan

I will begin this post with my most proud moment since my diagnosis.  Lately, even if I don’t eat a lot the scale (and the fit of my clothing) has told me I am gaining weight.  I have gained back the weight I lost before chemo started and, while this seems fine with the rest of the people in my life, I am very disappointed.  I know the weight loss was not done in a healthy manner –not being able to eat or keep what is eaten down is not a diet plan–but things were fitting better and I was feeling more confident.  I want to get back down to the weight I was before chemotherapy started.  My first task was to identify the problems: lethargy had caused me to become a couch potato, lack of motivation prevented me from doing anything about it, bad eating habits (brought on by the ability to barely eat but the need for calories) had continued despite my new-found ability to keep food down…these were all controlled by me.  However, the one other issue causing the influx of pounds is not something I control.  It’s the dexamethasone they give me before my chemo to help prevent nausea.

This is a problem.  Dexamethasone can cause weight gain and fluid retention.  Well, hello there other cause of my issues.  It also increases appetite (rotten bastard!)  No wonder I am packing on pounds!  Well, no more.  This morning, despite a sore throat (I think I might be getting sick) and the lack of desire to get out of bed, I awoke and popped in one of my old workout DVDs.  It’s a Jillian Michaels DVD that had kicked my butt when I was working out more regularly, so I didn’t assume I would get through it all today either.  I was right; I completed about two-thirds of it before I started to shake and feel nauseous.  Still, I worked out –cardio and weights!– which is a big improvement for me.  I’m going to try to do this three days a week to add to my two days of walking to Milo’s work in attempt to take off the pounds.  Otherwise I’m going to need bigger pants.

Spurred on by this motivation, and Milo’s prodding, I phoned Dr. Brook’s office.  After calling Dr. Brooks on Friday and speaking to him briefly, I was left with the ever so suspenseful job of waiting.  When two business days had passed and I still hadn’t heard back from him, I realized there might be a problem.  Dr. Brooks, as sweet as he is, tends to also be a little forgetful sometimes and needs reminding; he admitted as much when he gave me his cell phone number to call him.  This time he only partially forgot. 

Apparently, he was waiting to get the two tests back and thought that I had an appointment with him this week, so he wasn’t planning on calling.  When I left the message for him, it made him check the schedule to realize that I would not be seeing him…at all since I am not scheduled.  He phoned to tell me the results of the PI3K were normal, which means I did not qualify for that trial.  The second test, the C-Met, was a borderline result.  With no opening in that trial and no certainty that my results would mean benefit from the trial drugs, we were left only with the option of starting more chemo.  Yay?

This week I’ll apparently have another MRI to see if the tumors are stabilized.  Starting next Friday –yes, the one before Christmas– I will receive a ninety minute infusion of irinotecan.  This will be on an every-other-week basis with no end date as of yet.  Based on my reaction to the drug, I might be able to go back to floor nursing and my life in general.  I suppose we’ll determine that after a dose or two.  Lethargy hasn’t been as much of an issue lately and I am hoping that means if I can get my strength back up that I can go back to the unit and my soccer team.  I love the people I am doing the desk work for, but this is not really what I trained to do.  I don’t want my skills to slip, especially since I want to start school to become a nursing instructor.

So that’s the plan.  Back to the world of antineoplastics (chemotherapy drugs) and as needed medication to prevent a host of side effects.  Joy.