Biggest Fear

Bear with me, I’m about to become slightly mushy and romantic (and potentially depressing).  It’s all for the sake of getting to the point, I promise.  Reader discretion is, however, advised.  You’ve been warned.

I love my husband.

We all say that and mean it; some more than others.  I truly do love my husband.  Admittedly, ours didn’t start as a romance.  We were co-workers, sort of, and friends.  Our relationship required some (read as: an extreme amount of) prompting on my part.  He was hard not to fall in love with: generous, funny, smart…and not hard on the eyes.  He just radiated love and light.  Every one of our friends considered him family.

I feel very fortunate to be able to call him mine.

Mind you, he has flaws.  The man is irritatingly unable to be on time, even if I tell him the wrong time in hopes he’ll be on time.  He owns cats.  All right, it might not be a flaw, per se, but if you had to live with the three felines you might understand and feel differently.  Bless him, my husband also has the world’s worst memory, unless you count the girl from 50 First Dates.  Without a list, Milo is lost and will always forget something.  Always.

Which brings us to this morning (I swear, this has a point!).  As I was fighting yet another bought of nausea/hunger –an odd sensation let me tell you—and making a light breakfast, I happened to notice Milo’s pill container on the counter.  He has been taking a pill to regulate his heart rhythm since March and it requires prompt consumption; it must be taken exactly every 12 hours (give or take a few minutes).  Milo had opted for eight in the morning and a night, which works out well most of the time.  However, his work schedule keeps him until ten am, which meant his pill would be two hours late.  Being the anal retentive annoyingly pesky wife that I am, I decided that I would bring the pill to him on my way to work.  His job is conveniently around the corner from our home and on the way to my work.  No harm, no foul.

When I arrived, Milo’s back was to me and he was busy talking.  I didn’t want to get out of the car since I really needed to jet once he had his pills.  So, I did what any pressed for time woman would do: I called his cell.  When he answered, I bypassed the hello with, “You have an awfully nice ass in those pants…”

And he laughed.

Have I mentioned I love his laugh?  It’s contagious.  Just his laugh makes me smile and feel all warm and toasty inside.  When I actually have the opportunity to hear it in person and see his big, beautiful smile with his bright, brown eyes…well, it’s pure heaven for me.  I just melt every single time.

On the way to work, I was thinking about his fabulous laugh and smile, only to find myself crying.  It was an abnormal reaction, admittedly, but when I dug deeper into the emotion I easily realized what was wrong: I worry about him.  Milo had a rough patch before me and I have since been complimented many times on how much I brought to his life.  I don’t know if he realizes he brought as much to mine, but he did.  We were meant to be with each other and I know without him I’d be completely lost.  It would be like half of me was missing.

If I don’t survive cancer –which I will so I shouldn’t be worried—I’m not scared for me.  I’ve lived, granted not as long as I wanted or planned to, but I have.  I’ve heard a baby call me Mama, raised a family (okay, so they weren’t my children but still), travelled, and loved.  I’ve had experiences.  I would have no regrets, just a lot of things left to do on a checklist that isn’t really that important.

I just don’t know what would happen to the man I love more than myself.

Eventually, Milo would be fine.  He’d pull through with the amazing support of his family and friends (seriously, I lucked out because his people are truly blessings!).  He’s a survivor.  Yet, my husband would be hurt; he would suffer.  I can’t stand the thought of him having any pain in regards to me.  My biggest fear isn’t that I won’t survive; it’s that if I don’t, my husband would crumble.  I fear what he might become because he was wounded again.  He doesn’t deserve that; heck, he doesn’t deserve to be suffering along with me right now.  Have I mentioned how remarkable he is?

These thoughts brought me back to nursing school.  A very wise nursing instructor of mine once asked us to complete a project we all found a tad bit strange and depressing.  Once I started it, however, I realized it was a chance to understand what a dying patient must go through.  Though I am not dying, nor do I intend to for at least the next fifty years, I haven’t been able to stop thinking about this assignment and my response since my diagnosis.

The task: write your own eulogy.

The response:

I wish that you who love me do not mourn my passing but instead celebrate a life that was lived.  Remember me as a woman of conviction and passion, one who has had the pleasure to be a mother, a sister, a nurse and a teacher –but please do not define me by those titles.  We all have had roles in our lives, but we are so much more.  Our lives are so much more.  They are a complicated mess of convention, irrationality and leaps of faith.  Takes those leaps with your eyes wide open; you don’t want to miss the fall any more than you want to miss the pleasure of a successful landing.  It’s like bungee jumping…without the giant rubber band.

I have seen the sun rise along the New York Harbor and watched it set over the shore of Malibu.  I have traveled the world and still I returned to the place that meant most to me every time: Tucson, my home.  It was the one I was most reluctant to accept and still I can’t imagine having never lived in the desert of Arizona.  It is where I found some of my truest friendships and deepest love, both that of others and of myself.  It’s where I finished becoming me and found acceptance (both internally and externally).

The game of life was played by my own rules, shaped slightly by those of society and convention, and I couldn’t have had more fun.  I have sung my heart out, badly, and suffered a broken heart.  I have loved: both those who I have been privileged to call family and those select few that have become that by my choice.  I have also been loved as a friend, a sister, a spouse and a child.  I have given my heart and my time to those in need, worked hard for what I had and, when all else failed, found a career that made me passionate.  Never one to give in, my determination might have caused some headaches, but there were no regrets.  Every wrong turn, every hurt feeling, everything I experienced was a lesson I learned from.  Lessons I wish I could pass on to you, but know that you too must feel a tinge of regret, the throb of a broken heart and the rush of true love and friendship before it can be truly understood.  The hardest lessons to learn are the ones that we first must suffer.  Remember, there is always a light at the end of the tunnel (just hope it isn’t a train.)

Hold on to your memories and savor that time you fell roller skating, the first time you were kissed, dancing in the rain (even if you were twenty-seven and in the nursing school parking lot when you did it.)  Those moments will help define you and when you have moments of darkness they are what will bring you back into the light.  Save old notes and photographs, you never know when the kind word someone once told you might be needed to give you that extra boost.  Listen to your parents; they know more than you might want to believe.  Question and don’t be afraid to explore; that cat didn’t die in vain.  He probably knew a lot at the end of his curiosity…things you’ll only know if you follow in his footsteps and search the world.  There are plenty of mysteries, don’t let your life be one of them.  Mine wasn’t.

Life is risky: a combination of missed opportunities and moments that take your breath away.  I never allowed myself to be lost in either, always believing that there was a reason and an answer around the corner.  I want my end to be a lesson to you all: the only way to live is to put yourself out there, to take chances and to try.  The scariest things I ever did turned out to be the ones that I not only enjoyed the most, but that brought me to people that meant the most.  Going back to school was hard, but it brought me a new career and people I loved.  Moving away from my childhood home was the hardest thing I ever did, but it allowed me to become defined on my terms and not another’s.  I will suffer not where I am, allow yourself not to suffer either.  Love, lose but never ever forget who you are…and live every moment as if this might be your last.

 

It’s never too early to learn a few lessons.  Cancer is teaching me to let go, relax and enjoy the ride; you never know where or when it will end.  Sharing will all of you is freeing and cathartic.  I only hope you equally find peace.

And, should something happen, I ask one thing.  Someone please take care of my wonderful husband.  He’ll need it.

Highs and Lows

On Tuesday night, I had a bit of a breakdown.  After a particularly nasty moment of becoming violently and physically sick after dinner, I sat on the floor with my head in my hands and cried/laughed.  It was a particularly low moment; one where I wondered what I had done to deserve cancer.  They say Karma can be a cruel and indifferent bitch, but when you are trapped in a dark, giant pit looking out into the sun you really understand what they mean.  Even with support, it can be a lonely place; no one truly understands what you are going through.  In fact, each cancer survivor and fighter seems to have a slightly different experience.  There are places where treatments and side effects overlap, but for the most part cancer is a disease you go through alone even in a crowd.  So for a little while, I let myself wallow, let the pain and suffering wash over me.  Tired and emotionally drained, I remember thinking that I don’t want to die.  I don’t wan to suffer anymore, either.  What I needed was my life back from cancer. Whenever there has been some semblance of normalcy, it has been taken away by an extraordinarily bad day.  It has been emotionally and physically draining; I needed a sign.

Two days later, a woman that was visiting our work (Cindy) said something that caught me off guard.  She asked when I had been diagnosed and I told her the gritty details.  I have been open and honest with everyone; cancer isn’t a disease I feel people should be embarrassed or shy about.  Cindy was surprised that my diagnosis had only been last month; she commented that my spirits seemed high and I looked really good.  I replied, “Cancer has taken my hobbies from me, stripped me of my soccer team and a job I love and pretty much messed with my body.  I decided it couldn’t have my personality.  That was mine.”  The answer rolled off my tongue without even a thought.  It was the truth: cancer had been stripping my life away one piece at a time but it hadn’t taken away me.  As long as I continued to be me, I was winning!  Cindy’s response: become a motivational speaker.  Apparently listening to me made her feel like she should stop letting little things bother her.  If I could stay optimistic through cancer, she shouldn’t sweat the small stuff.

I don’t feel like I’m some sort of huge motivational force.  I’m just a person doing the best she can to get through a really rough time.  It’s ironic that for someone like me, who loves her birthday because it’s a day everyone has to pay attention to her, I really hate the attention that comes with being sick.  I’m the person that loves to do for others.  When friends need something, I jump to do it no matter what the personal cost to me might be.  I hate letting people down and it eats at me when I do.  This time, I can’t be the person that rescues, I need rescuing.  I need the help and it’s frustrating.

As for the physical me, since Dr. Brooks decreased my dose I haven’t felt near as ill as before.  I’ve tolerated food better, maintained my weight (to the delight of medical staff and disappointment of me) and had more energy.  Chemo day is pretty much a standard day of the week now. When I don’t have it, I’m able to delude myself into thinking I’m fine, especially if I don’t feel too ill.  This past Friday, I didn’t get to have Carla as my nurse and the only thing I can say for the nurse I did have is…wow.  I was both afraid of getting an infection (who touches shoes and then a port-a-cath site?!) and that I wouldn’t get my chemo (she pretty much ignored me most of the time I was there.)  If Tawnya hadn’t been with me and encouraged me to finally speak up, I might still be waiting for my chemo dose.

To finish on a slightly higher note, I am going to share this: my hair is falling out –ok, perhaps that isn’t the higher note.  Not huge uneven chunks, but more than the regular amount of hair that should fall out daily.  It was extremely disheartening.  I had considered cutting my hair before now, just in case it started falling out.  The only reason I hesitated was my hair: I loved it.  It was long and curly, very girly.  Well, not anymore.  Saturday, with Malika’s blessing, I went and had my hair cut, styled and…colored.  Introducing: new Janine…

Last Few Days

I noticed a distinctive difference in myself starting on Wednesday this week.  I woke up and for the first time since July didn’t feel seriously nauseous.  I was able to eat breakfast, have a snack and some lunch and still eat dinner without incident.  The best part, I even had more energy than normal.  I took the stairs at work and caught myself dancing and singing with the radio.  I couldn’t remember the last time I had done those things.  The last time I felt well enough to do anything at all, energy and eating wise, was family reunion and even then it wasn’t perfect.  There were moments even then I wasn’t feeling this well.

Thursday, I was tentative when I woke; what if the feelings of Wednesday were just some sort of mirage and I was going to be paying for it?  I lucked out; it was real.  I was able to eat and still dance to the radio.  I had enough energy that for the first time in months I cooked dinner for Milo.  I could even help with chores.  I know this all sounds immensely silly and possibly unimportant, but when you are used to being so exhausted that at two in the afternoon it took a nap and keeping food down means you take about half a sandwich and pray a whole lot that the Ativan works…well, you get me.  I was so happy to have a piece of my life back, to feel good, that I started to think maybe I had been crazy.  This has all been some wicked nightmare and I didn’t actually have cancer; I’ve been fine and the doctors are wrong –delusions are so nice, aren’t they?  But really, I’m fine…

Then, Friday came.  While I was feeling well enough, breakfast apparently was a bit much on my stomach and I felt rather nauseous.  When we arrived at the doctor’s, my previously good mood (because, hey, when you’re finally feeling good your spirits start to soar!) was ruined.  I walked in, was greeted by a man dressed in a skin tone unitard that was “streaking” since they were doing a tribute to the 60s this week (I had forgotten about that), and took my seat.  I slumped in my chair and nearly cried.  It was still real; I still had cancer and toxins were still going to be pumped into my blood.  Milo and I still can’t work on having a family yet.  It was a lot to take after two days of feeling so well.

Chemo was uneventful, as always, though the nurse was a little concerned by my down attitude.  I perked up eventually and even managed to have some lunch, which made Carla, my nurse, very happy.  Dinner even went down without issue.  Milo and I were really excited by the progress, even if the doctor didn’t seem to be.  He was concerned that I still spent the better part of two weeks feeling nauseous (though I kept insisting I had been sick like that before chemo!)  Dr. Brooks decided it was in my best interest to decrease the doses back to normal ranges rather than pushing our luck.  I didn’t necessary agree, but I didn’t get much of a say either.  He did say I could travel for Thanksgiving if I wanted, but I need to keep in mind that I might not feel well.  And, he decided when my next MRI would be: September 30th.  We’ll see what is going on with the liver mass then and sometime soon do a chest x-ray to see what is going on with the mets to my lungs.  Fingers crossed.

Random Thoughts

When I was waiting for the nutritionist today, I perused the cancer resources that AZ Oncology has.  There is a small office at the end of the building that houses the wig/head wear room, an alternative treatment room and a wall of library information.  I spent about five minutes looking for books that pertain to my type of cancer and found nothing.  For me, this has become a rather common occurrence.  The thing about my cancer: there’s not much info on it.  People know about breast and ovarian cancer.  They understand colon cancer.  Tell them you have an adenocarcinoma on your liver that is possibly a cholangiocarcinoma and you are in for some funny looks.  There isn’t any special literature.  No people raise money to study your tumor and prevent it.  No survivor group exists (which is also a tad concerning when I think about it too long!)  You just have this odd ball cancer that doesn’t fit into the mainstream.  Yet, you suffer like those with the other cancers.  Chemo is just as violent.  Side effects will take away your hearing, your appetite and always your ability to lead a normal life.

I guess I have a form of cancer envy.  If I had breast cancer, people would be wearing pink ribbons and there would be yearly walks to collect money for research.  Leukemia has support groups.  Pancreatic and colon cancer have celebrities begging you to support research and get tested.  There’s camaraderie among those with similar cancers (though it does extend to all cancer patients).  I just don’t seem to have a lot of information on my cancer and I certainly don’t have a survivor I can discuss it with.  It can be frustrating and lonely.

As a side note, for those interested in being a chemo buddy I posted the perspective dates of my cancer treatments.  Just let me know if you’d like to be there via email or text and I’ll let you know if someone is going with me that day.

Trusting God

I’m not an uber-religious person.  Milo likes to say we are spiritual not religious, which is closer to the truth.  I believe in God, I’ve seen prayer do some amazing things and I know there are such things as miracles.  I also believe in things that can’t be explained like communication with the spirit world and angels.  In fact, I’ve had my run in with both.  At the risk of sounding absolutely crazy, I’m admitting this to the world right now.  I have to, because what happened to me this weekend is nothing short of an unexplained moment that has changed my life.

Candice, who I know as Christine since she usually goes by her middle name, is a friend I met a few years ago during my soap opera viewing phase (stop laughing).  We were both interested in writing and would often write stories about a couple that we liked on the soap (I said, stop laughing).  I found her stories entertaining and we’d often be up in the middle of the night chatting.  We drifted apart over time, though I would always email her on her birthday.  This year when I emailed her, I hesitated during the process of writing.  I was uncertain if I should tell her about my cancer.  I didn’t want to mar her birthday wishes with something so depressing, but it felt wrong to lie to her and tell her all was well on my end.  I ended up telling her and what followed was a conversation that completely changed things for me.

Candice is the complete opposite of me: she’s super religious.  So much so, she has one of those relationships with God that most Christians would envy.  She doesn’t just talk to Him in prayer as most do; she receives responses.  When I was a child, my mother tells me this is the kind of connection I had with Him.  Candice’s faith is what every Christian strives for.  It’s pure.  In the process of telling me how God has changed her life, Candice told me that God had a specific message for me.  He wanted me to know that He intended to take my cancer away because I was a light in this world.  He needed me to guide others, specifically children since I have a talent with them.  I have a purpose and to serve that purpose I would need to trust that He was going to take my cancer away.  I would have to put faith in Him and do one thing for Him: write.

I cried and despite that I never felt more at peace.  Somewhere inside me I knew Candice was telling me the truth.  I would survive cancer.  I would go on to have children and a life with my husband.  God was in control, something I’ve never really stopped and understood.

I’ve always believed in a higher power, just never really understood organized religion.  Candice gave me a glimpse of the faith I had as a child, which I need right now to help me get through the darkness.  I’ve let life veil the connection I once had with my faith, but I deeply believe that I have had a turning point thanks to Candice.  I’ve also never been more certain that I am going to live through this cancer.  God has this.

Generosity

One of the most interesting things about cancer is how your perception changes once diagnosed.  I like to think I was a classic realist (per myself, others might have called me a bit of sarcastic pessimist).  As much as I tried to believe the good in people, I tended to be let down often enough that I stopped trying.  I was always planning for the best and worst case scenarios (admittedly, I still tend to), which drove my husband absolutely crazy.  Once they doctor confirmed that I had cancer, however, things changed.  I found myself believing that I was going to survive cancer no matter what.  Even when I falter slightly, deep down inside I know for sure I will be here five or ten years from now.  It’s amazing that I’m so confident, even when sometimes I feel like a scared little girl.

Yet, it isn’t just my belief in my survival that caused this change; it’s people as well.  Facebook had reconnected me with old friends that have become a support system for me.  They give me tips on healthy diets, offer me a shoulder to cry on and encourage me to keep going no matter what.  They send me messages of love and encouragement, which gets me through rough weekends of chemo treatments and nausea.  Friends I didn’t even realize would care have just amazed me with how open and loving they are.

Even my coworkers have amazed me; not only do they check in on me almost daily, they instantly grab me in hugs when they see me and they are genuinely concerned.  And they have been generous.  My unit collected money for a gift card so I could have entertainment when I was receiving my long treatments.  In a time when money is short for everyone and sparing cash is difficult, these people dug into their pockets and their hearts to do something kind for me.  I don’t know if I deserve it.

I can’t even begin to thank all the people for what they are doing.  What I know is that these people are changing my life and my view on the world.  I feel loved and beyond blessed to have so many wonderful people in my life.  How can I not be optimistic about my outcome when so many people are giving me reason to?  I am going to push through this just so I can find a way to thank each and every one of them for what they have done for me.  I love them all.

Chemo: Weekend Two

After the weekend I now refer to as “My Exorcist Audition”, I wasn’t really looking forward to another dose of chemotherapy.  I spent the better part of the first week fighting off bouts of nausea, though at least the ativan allowed me to eat.  By Thursday, I was finally feeling human again and looking forward to my dear friend Paula coming to visit for the weekend.  I only feared what would happen when I was given my next dose of chemo on Friday morning.

I arrived and had my appointment with the nurse practitioner, who really didn’t have a lot of news for us.  She confirmed that my symptoms hadn’t really changed, asked how my nausea had been since the addition of the new medication and then left it open for questions.  I didn’t have many except finally getting back to swimming (I need some kind of activity besides drinking ensure, taking pills, sleeping and reading charts).  She was fine with my swimming whenever I felt I was up for it.  Finally, I might get out of the apartment!

Tawnya was my chemo buddy for the day and I felt so incredibly lucky to have her around.  She kept the mood light, laughing with me and Carla and even running out for food and drinks when we started to get hungry.  It was nice just to have someone there to distract me and to spend time with someone I don’t get to see as often as I would like.  Chemo Friday is becoming a nice way, ironically, to get together with the people I love.

Fortunately, the chemo effects were so much milder this week.  I was able to tolerate food, I never changed colors and I was able to spend time doing things rather than just sleeping.  Paula, Malika and I were able to go get our nails done, see a movie and eat really delicious food as made by Paula.  What I did notice, however, were the symptoms were worse at night.  During a birthday party we were having for Chris, I was unable to keep food down and slept through most of the party (Sorry Chris!).  I also found that constipation is a major issue and I need to be more aggressive in preventing it.  This week I am lucky enough not to have another dose of chemo and hope that I can enjoy one week without feeling queasy.  Only ten treatments left!