Some Good Stories…?

Since the doctor’s office, things have been a little…strange.  I spent the days after meeting with Dr. Ong in a major depressive funk.  I would burst into tears without warning and sometimes over the silliest things.  The only time I was truly comfortable and distracted was work.  It was there, and only there, I stopped thinking about myself and what might lay ahead of me.  At the hospital, I was nurse Janine and I needed to take care of someone else; my patients trusted me to do the best for them and I threw myself into that instead.

The problem with work as my only true distraction, because my online classes just doesn’t keep me busy enough when I am alone, is that work cannot be an everyday thing.  Physically, I can do three, maybe four, shifts.  That’s not enough of a week to entertain my brain.  With Milo working six days a week, there are plenty of days to be alone –even if only for a few hours– and too much time to think.  It starts from the moment I wake until the exhaustion takes me to dream land at night.  There is no peace: not showering, not watching TV –which is almost the worst distraction–, and definitely not listening to music.  Somehow, everything sets me off and I become a blubbering mess.  The Thursday after my appointment was by far the worst.  I called Milo in the morning, per our ritual, only to start sobbing about how this wasn’t fair; why should a good man like him have to lose his wife?  Why was he being punished this way?  I understand I’m no saint, but Milo is just amazing.  He deserves good things.

My crying, of course, worried my husband.  I just couldn’t seem to make it stop.  So when I called Malika, she immediately headed over to see me.  What started as a distraction, ended up being one of the good stories to tell.  Malika had already been headed to my side of town to check out the new Pruis C, which apparently the Toyota dealership near me had in stock.  Since we were out and about, I thought seeing some pretty cars and taking the for a drive, even if I had no intention to buy one, would be a fun time.  Distractions, even retail therapy, are good.  So we headed over to the Toyota dealership to see the car.  It was a beautiful blue shade and drove so nice it made my old, paid off, dying car seem crappy.  The hybrid technology made it get just shy of fifty miles per gallon, which is more than twice what my car was getting.  After test driving it, I was seriously tempted.  So I sent Milo a text with a picture of the car and the words “I can buy car please?”

The next thing I knew, I was signing papers and becoming the owner of the car I’ve officially named Jellybean.

Since, I have panicked several times over my decision.  It wasn’t a cheap car and the future can be so vague.  With my being sick, anything could happen and this was a major expense.  When I was healthy this decision worried me, but now it seems even worse.  What if the down payment I made could have been used towards treatment options in the future?  What if I end up out of work because of treatments or the tumors progression?  What if…?

But I couldn’t let what if rule my life anymore and instead bought the car Malika had her eye on.  I love it and, despite my worries, I have no real regrets.  My car literally stalled on the lot that day and was seriously draining money.  In the long run, I now have a safe vehicle that gets much better gas mileage and is more dependable…

And leads us to story number two.

Despite the pendulum of emotions –ranging from happy, believing-everything-will-work-out-Janine to depressed, I-don’t-want-to-die-Janine– I find that there is a happy medium I reside in most of the time (denial girl).  I am constantly looking for suggestions to make to my oncologist about treatment and praying that some miracle will happen.  Something has to work out, this can’t have been for nothing.  There was a lesson, a greater plan and I will survive…

Today’s a good day.

When we went to Dr. Brook’s office last week, I was having a mediocre day.  We walked in and it was instant nausea.  The smell of the building, of chemicals and cleaning solution, makes me sick to my stomach.  We had made a few decisions before going in: since we were headed to the OMG! Cancer Conference, I was not going to do chemo.  Also, I wanted a lidocaine patch for when the back pain I have is too much for ibuprofen and I can’t –read as: won’t– take my oxycodone.  Since I can’t walk around with ice packs or heating pads attached to my back, both of which help somewhat, then I needed an intermediate treatment.  We also wanted to know what other suggestions there were for treatments.  I really am getting tired of chemotherapy and being sick when I want to go and do things.  What started as three days of nausea and lethargy has stretched into four or five days of misery.  I just don’t want to suffer for no apparent reason.

Unfortunately, Dr. Brooks was not in for personal reasons, though that didn’t stop him from answering my phone call or text messages.  In fact, he told me that hearing from me always brightened his day, even if he had to see me for such negative reasons.  I have a pretty awesome doctor.

While he was on the phone we agreed to the patch, which his nurse practitioner ordered for me, and that I would skip last week’s treatment in favor of not being sick for my entire trip.  After my appointment with Dr. Ong on the tenth, we would reconvene and decide what our next step would be.  In the mean time, we’d both continue researching and see what happens.

Poor Linda really didn’t have to do anything but write a script.

I was very pleased that we made the decision to skip chemo, not just because of the trip but because the second we left the doctor’s office I started to feel better.  Cancer leaves a patient with so little control, anything I can do to take some of its power away makes me happy.

Friday, after months of campaigning and planning, we left for Vegas and the OMG 2012 Cancer Conference.  I had managed to make my goal of two thousand dollars, which meant my conference fee and travel expenses would be covered.  We drove my cute little Pruis with its great gas mileage to Vegas and arrived at the Palms just before the kickoff party.  Malika and Milo talked me out of wearing my wig to the party –“Everyone here looks like you and understands the hair loss, why worry about a wig?”– and we headed up to the Moon night club.  The Moon was beautiful inside and the view of the Vegas strip was breathtaking.  I loved looking out across the sky at all the lights, but I was too shy to walk over and talk to other people.  Some looked healthy, as if cancer wasn’t even on their minds, others made me thankful for the health I had as caregivers pushed them around in wheelchairs.  It felt odd to be among so many people, vendors and cancer patients, that understood what I was going through.  I felt, for a little while, like I wasn’t really alone anymore.

We left the launch party early to find dinner, which consisted of the world’s greatest sushi at Little Buddha.  By time we finished eating, a day of driving caused us all to want to hit the sack in preparation for day one of the conference, which started with breakfast.  The tables each had a little sign on them to encourage discussion.  We sat at “Snookie destroyed our civilization.  Discuss.”  but only because the table “Team Edward. Team Jacob. Team Who Cares?” was full.  (Sorry if you don’t get the references folks, ask and I shall explain.)  No one ever did join us, which was disappointing, but we also were able to finish quickly and get good seats for the conference.

The conference wasn’t quite what I thought it would be.  It started with a speech from Matthew Zachary, the man who started Stupidcancer.org.  He is a survivor of cancer and during his treatments he realized how lonely it could be.  The more research he did, the more he discovered how poor treatment and survival rates were for people in the fourteen to forty category.  He wanted to change that, so he founded a little website to unite these cancer patients.  A little website that eventually would break records and forge a community of people who needed a shoulder to lean on and someone to understand.  Then, came the conferences.

After Matthew enthralled us with the history of Stupidcancer.org, he told us that things were changing; we were causing change.  Doctors were listening and researchers were seeking answers.  Sitting there, listening to him speak, I kept hoping for some kind of relief.  What I felt instead was disappointment.  Was all of this too little, too late?  Would any of these doctors be able to help me?  If there was no such thing as a bad cancer, which Matthew stressed, then why did I feel like I had been granted one of the worst?  Why didn’t any of the progress make me feel better?

Matthew’s speech led into an interview with Will Reiser, the man who wrote 50/50 based on his own life.  Will was probably the highlight of the entire weekend for me.  He’s sweet, soft-spoken and very much a model of what someone given a lousy set of odds can do.  I was very excited to see him in person and later meet him at lunch.  I simply wanted a photograph with him, but he took interest in me.  When I said I was failing treatment and desperate for options, he gave me the name of his personal alternative medicine doctor in New York City and said to use his name to get in and see him.  Seriously, that’s how awesome this guy is.  Will Reiser is awesome.

The final segment before lunch was “games man,” who did a duck collecting competition.  While I didn’t learn much, the game was a lot of fun and I kept the ducks for my bathroom.  For the record, I need no more rubber duckies (not that I’d send them back or anything.)

At lunch, we were encouraged to sit by cancer type (or caregiver if we didn’t have cancer.)  When I walked in, I scanned the types: breast, thyroid, soft tissue, testicular, lung, colorectal/bladder, lymphoma…etc.  What wasn’t represented: cholangiocarcinoma.  It wasn’t there in the vague (like GI cancers) or the specific.  There I stood, in a room full of cancer survivors –even those still in treatment– and I was still horribly alone.  I was a one in a million type of cancer* (*some statistics may vary or be exaggerated.  This is one of those.)  I had no treatment plan.  My survival outlook was poor.  All the support in the world wouldn’t change any of that.  So I stood there, looking around for a place to sit before seeing Will and going to talk to him.  Then I sat at the caregiver table and spent the entire lunch hour explaining why I was there to other people.  Well, that and complaining that it was odd to serve processed meats (cold cuts) at a cancer conference.  Poor planning there.

The afternoon was a lot of being spoken at, which wasn’t such fun.  We learned a little about the law and cancer being qualified as a disability, which meant we had certain rights.  I was glad we stayed for that, though my boss has been really awesome about working with me.  The second session we attended was about spirituality, which I sometimes feel I am lacking.  This ended up being a very cleansing experience, and one of the best of the conference.  Six of us got up on stage and explained why we stayed for the session.  One said she stayed because every day she prayed to God for a miracle and knew that this was His plan and he would lead her through.  Another said how angry she was that God not only gave this cancer to her, but took her brother with the same cancer.  She was pissed and it showed.  When I finally got onto the stage, I said that I stayed for answers.  I had hoped someone would say something to me that clicked.  I dwell often in the land of uncertainty.  I believe in a higher power, but I was definitely uncertain about God.  How could a loving father punish his child by allowing them to have cancer?  Or worse, giving it to them?  How could He do this to me?  What had I done wrong?  I explained I was angry and I wanted someone to say something about God to make me understand and believe, to trust.  What I found instead was a sense that I was not completely alone.  Everyone was angry and bitter over the fact that they had to go through this, even if they did believe.  I found a sense of camaraderie in a time when I felt normally alone.  It was the best gift I could receive, even if there was no cure or treatment.

After this part of the conference everyone reconvened for awards.  I didn’t win the car, or an iPad, but I was recognized for my collection.  When the award ceremony was finished, we hit the strip for some fun.  I do regret not going on the roller coaster at New York, New York, but fifteen dollars a person seemed slightly ridiculous.  It was still a lot of fun, though, and it’s been so long since I’ve seen the Vegas strip that I enjoyed it a lot.

We didn’t attend the second day of the conference, only because we were tired of being lectured at.  Instead, we had breakfast on the strip and hit the road early.  This brings us to story number three.

We detoured slightly to the Hoover dam, which was only slightly out of our way.  It was when we got to Kingman, however, that I suddenly became ridiculously spontaneous.  I’m not normally someone who does the spontaneous thing.  I like plans, lots of plans.  Over-planning even.  So when I saw a sign saying it was just two hundred miles to the Grand Canyon, it surprised me that I exclaimed: “I want to go to the Grand Canyon today!”  Malika and Milo, reluctant as they were, gave into the whims of the cancer patient.  The next thing I know, I’ve changed into pants, even if I was still wearing flip-flops,, and rerouting us to the Grand Canyon.  Two plus hours later, we arrived at the Grand Canyon.

How would I describe the Canyon trip?  Freaking cold!

It was about forty when we got into the Canyon.  My fingers and toes were numb; all I had on were track pants, a sweat jacket, t-shirt and flip-flops.  I was not prepared for cold.  Neither was Malika.  Milo, of course, didn’t mind.  To him, this was “spring” weather –gotta love my Michigan man.  We were able to get a few shots at one of the areas before we decided to move to a different location.  In the process, however, is when the real fun began.  Prior to leaving the first area, we noticed some clouds but thought nothing of them or the fact that Malika’s boyfriend, who had joined us, told us it was supposed to snow in Flagstaff that night.  These clouds, however, were more ominous that we took them for.  In fact, as we were driving to the second area, and passing some lovely elk, it started to flurry.  By the time we arrived at the shuttle to take us to the second spot, the flurries were a full snow storm!  I was freezing and the Canyon was a giant cloud.  To me, it was time to leave, so we did.

We might not have made it to all the sites or made it home before midnight, but the weekend was a wonderful one.  I managed to kick an item off my bucket list and have some laughs with my husband and friend.  Despite feeling alone at times and depressed at others, I realize there is too much left to do to give in.  I am going to spend my days off researching options instead of letting little things, like the thought of my husband’s laugh or smile, make me cry.  I won’t worry about what I will be missing or what my family will deal with when I am gone because I am going to do my best not to be gone.

And I will keep living my life looking for the next great story.

**For the whole album of photos, you can visit this link: Vegas Road Trip

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6 thoughts on “Some Good Stories…?

  1. Maret says:

    Totally need to take a ride in the new car!!! I am glad the weekend went well!!! Sorry you didn’t get to sit with others like you…. 😦 Keep up the good work though!!!

  2. Malika says:

    This is great! Oh, the memories we all created! I’m glad we did what we did!

  3. What a great read with my morning coffee. Thank you for sharing all of your experiences.

  4. Teresa says:

    Great to see another post!! I am so glad you were spontaneous. Unfortunately you do have that awesome “rare” cancer. But from reading your post…you have a lot of spunk and a lot of fight!! Just remember…NEVER GIVE UP. And it’s o.k. to cry. Cry, cry cry…and then laugh:)

  5. exiledtyke says:

    As powerful as always!
    Somehow I think the car was less a spontaneous purchase than a statement that you are going to be around to enjoy it, and that’s about having some control of your life.
    Hope you enjoy your Prius as much as my wife enjoys hers.

  6. jdp64 says:

    AHEM! Got your attention??? Well. I think that I am qualified to comfort the most precious person we have? Don’t You????

    We love you so much…..

    Mom and Dad

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