A few more blanks to fill

Questions and Answers part II?  Pretty much.  I asked some friends what they thought would be helpful to answer, and via a forum and my friends in person and on Facebook, well, here they are!

First you said you wouldn’t have to do chemotherapy…and now you say you do.  What changed?

Well, when they went in and took the lower lobe of my lung they also did biopsies of the lymph nodes in and around my lung.  There was also always a possibility that I would have to do chemo based on the tumor size and whether any of the nodes tested positive for cancer.  While my tumor was quite small, there were two lymph nodes that tested positive.  Think of lymph nodes as the body’s highway, it helps reduce infection and will traffic things around your body to where they need to be.  Finding cancer in your lymph nodes can be dangerous, so taking care of it ASAP is always important.

Speaking of which…how did your surgery go?

Well, actually.  I’ve had my family and friends helping day in and day out with my kids and their school, as well as trucking me back and forth to doctor appointments.  Both of my chest tubes are out, though the very tip of my right lung is taking a long time to fully heal.  Yawning,  hiccuping, and sneezing are a bit on the painful side, and I can’t slouch all too often (…I suppose that’s likely a good thing, though!) because my abdomen will get incredibly sore if I do.  A few nerves were cut, which is something that happened during my mastectomy, too.  So instead of my right armpit being the only numb place on my right side, part of my waist on the right side is a little numb, too.  I can still feel pressure if you poke hard enough, but I can’t feel soft touches.  Such a sad thing, really, now whenever my husband tries to tickle me he fails miserably on that side!

How do you deal with scars?

They’re part of me, I can’t quite deal with them as there’s really not much I can do aside from tattooing my entire right side to hide them.  To be honest I really don’t have a problem with them, because the fact that I have them means that I’ve gone through something that’s helped push me towards surviving.  Those scars are my stories, my trials, and my triumphs.  My best friend, a liver transplant survivor, has some epic scars that she always shows off without any qualm.  Before my mastectomy and lobectomy I always looked to her for example.  Without these scars, we’d be dead.  Give me a scar any day.  (Besides, chest tube holes can become gunshot wounds and long slashes can be knife wounds.  Nobody needs to know I’m not a superhero amazon by night…right?)

What questions are OK to ask?

This one’s pretty tough as it really depends on who you’re asking.  It’s best to take into account…is this person really sensitive?  Is this person somebody who goes in with fists blazing…?  Sometimes there are things you can’t ask your grandmother about her colon cancer, that you can ask your forty-year old aunt about breast cancer.  Either way, know that you should give the person some time before you start hammering on the tough questions.  Asking things like “Will you survive?” is generally not something that’s OK to ask in any situation…it’s a hard question to take because there’s never a definitive answer, and some people see the possibility of death in the future as something they don’t want to talk about.  Asking…How can I help?  What can I do?  What do you need?  And most importantly…Do you want to talk about it?  That last question is the key to finding out just how much you can ask.  Finally…respect wishes if they don’t want to talk about it.  Typically there’s somebody they’ll talk to about everything–whether it’s a spouse or child or close friend or sibling.  Most of the time it’s not so much that they don’t want you to know their situation’s details…it’s simply that it’s very difficult to talk about it.  If you can, and if you feel it’s appropriate, it might be better to ask that person instead.

What’s it like being bald and being a woman?

To be honest? Weird.  Not to mention how fast showers go when you don’t have all that hair to wash.  To go from having a full head of hair to being completely bald is a big jump, and not one that many people want to take in the first place.  My first time I was only sixteen, and you won’t find too many teenage girls willingly shaving their head for the heck of it.  I felt naked, vulnerable under that wig  (especially in High School, you never know if some person you have a vowed hatred for will come and pop off your wig.  It never happened, but you can be sure I thought about it.), and I felt like everybody was staring at me.  Oddly enough, most people didn’t even know that I had a wig on and complimented my new hairstyle frequently.  Eventually I turned my attitude around and started offering my hairstyle to them when they complimented it, wiggling the wig  a little with a rather mischievous smile.  When I was twenty-one and lost my hair the second time I felt incredibly self conscious…I had a boyfriend that I very much wanted to keep and I was terrified that my lack of hair and the angry cancer cloud hanging over my head would scare him away.  Funny thing, as it turned out he was interested in more than my hair…one of the reasons I married him (and a minor reason, I might add, but this isn’t a post about the many many reasons I married him.)  By the time I was twenty-seven I had a lot more self-confidence than I had when I was younger.  Married with two kids and in a very good place in my life, there was very little that could shake me.  Again cancer swept in and hit me like an anvil, but this time I wanted to do something comfortable and I didn’t want to feel forced into a wig.  I opted for a scarf that I’d read about during my mastectomy recovery and I’ll be going back to those again.  I feel feminine still, even without one breast and the impending loss of hair once more.  Do I like losing my hair? No.  But knowing that my hair isn’t what defines me helps.

Do you keep in touch with the other kids who were in your trial program as a teen?

Actually, I never met any of them to my knowledge.  It was something of a random selection, I assume, and we were never introduced in a big sort of group.  The doctor simply told us that they were holding this trial and gave us the option to participate, and we were also told that there were others.  We were never, however, introduced.

Questions from Kids

Now…I have a friend whose daughter had questions when her grandmother passed on that didn’t really get to ask the questions she wanted answered.  Well, I’m hoping that this can help, but please understand that different cancers are different for different people, so not all of my answers will be solid for everybody. (Wow, try to say that sentence five times and see if it still makes sense! Ha!)

Does it hurt where the cancer is?

Now, I have answered a question like this before.  Most of the time the cancer itself is painless…it’s all of the side-effects that tend to be painful.  Lumps don’t have much feeling to them, but if they’re pressing on nerves, organs, or bones they can be quite painful.  Sometimes they can impact function in your body, whether it be your intestines or your kidneys, and that can also be painful.  Now, when a kid asks if it’s painful…you have to judge how well your child can take the answer.  I can say that if I sat down and told my son that, yes, the cancer is causing pain, he would nod sagely, take it in stride, and pull off the same attitude I used to (Ignore it and it’ll go away.  Ahh, I remember being that naive.).  However, if I told my daughter (and she understood, keep in mind she’s only three.), she’d likely cry out “Oh no!” and be distraught for days.

Are you afraid?

To say no would be an outright lie.  Depending on the kid you’re telling, and how well they can handle the truth, it’s no shame in telling them such.  However, sometimes being afraid is healthy and a natural reaction when we face danger.  Cancer carries so much risk to our health that many of us can’t help but be afraid.  I’m afraid, but I’m ready.  You can be brave and afraid at the same time.

Do you miss how your life was before?

Of course, I’ll always look at my wedding pictures fondly and say … “Man my boobs looked fantastic.  I’ll miss them.”  But in truth, we always will miss doing what we were once capable of doing.  Regardless of cancer, just growing older will make this happen.  Toddlers in potty training sometimes miss being able to wear a diaper all the time.  A kindergartner probably miss when they didn’t have to go to school.  Junior high kids probably miss when life was easier in elementary school and there wasn’t all this puberty stuff in the way.  High school students….well, likely miss the same thing as junior high kids because I don’t know of anybody who really misses junior high.  Adults miss how they were able to eat and run and do anything as a teenager.  The cycle goes on and on, but for some of us some things are cut short.  I suppose I could miss that I likely won’t run a marathon now…but in truth I never aimed to do that before they took part of my lung!  So…yes, we miss it.  But like all things we miss, we have to carry on and look forward to what we still can do.  Even if it’s very little.

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Because of your history…

It occurred to me the other day that I’ve been fighting cancer off and on for the last fourteen years.  While that in and of itself is a long enough time to make anybody uneasy, it also came to my attention that I’m thirty.  That’s just about half of my life battling cancer.  To say that cancer hasn’t shaped who I am or how I live my life would be an absolute fabrication.  From who I married, to where I live, to how I eat, and how I take care of myself…cancer has had a heavy hand in influencing how I do things.  This, of course, means that it’s had a pretty influential position whenever I go into the doctor for the tiniest of ailments.  Unless it’s a direct injury (can’t quite give cancer credit for tearing ligaments in my ankles now, can I?), just about any ailment you may have can be linked to cancer.  Does it mean you should cry “I could have cancer!” when you get the flu?  No, no, not at all.  The best advice I can give is to stay vigilant on preventative treatments when it comes to that case.

Though, like our whooping-cough epidemic in the state–where every time a coughing child came into the urgency care waiting room everybody immediately thinks “pertussis!”–any time I go in for a minor check up, my doctors seem to think…”Could it be cancer?”

I won’t complain too much on this, because it has saved my life.  Going in for pneumonia and seeing a spec on the scan…well, first words out of my doctor’s mouth were…”Now, this looks like it’s just pneumonia..but because of your history…we’re going to do a few more scans.”  That time in particular it saved my bacon and helped find the lung cancer that was residing in my right lower lobe.  But sometimes it can get a bit silly.

For example: acne.  Everybody gets it.  Embarrassing or not, it’s a pretty prominent factor in a lot of our lives, particularly if you’re below the age of twenty-five.  For some of us, even later.  Well, stress tends to pick it up, too, and about two and a half months ago a rather irritating bump came up underneath my left eyebrow.  You couldn’t see it, but you could feel it.  It was deep, large, and downright irritating.  I decided to wait it out…but needless to say…it didn’t relent it’s hold.  Never came to the surface, never changed in size.  Now, after all the things I go to the clinic for, going in to look at what I was pretty sure to be a large zit seemed…really trivial.  But I ended up referred to a dermatologist–why?  Well…because of my history of course!  It could be a malignant tumor hiding there under my eyebrow!  After the last few months of new cancer discovery this really isn’t something I wanted to hear.  Seriously.  This thing feels like a giant zit, do we have to treat it like a tumor?  Of course we do!  Because of my history.

As I’m sitting in the dermatologist’s chair all I can think is, “Please let it be a zit”.  He opts to biopsy it…and as he does so decides to inform me that, indeed, it looks like a zit.  A ‘deep oil cyst’ if you would prefer.  Then, after a few moments of deliberation, he decides that it’d be optimal to extract the remaining stuff.  What does that mean? Well, he’s already got my eyebrow slightly sliced open..he’s basically taking an opening to pop it.  There’s really nothing quite like going to the doctor because of your history of cancer to get a stubborn zit popped.  The lovely stitch in my left eyebrow adds a nice touch of flavor to it.  I could always lie and say my head decided to introduce itself to the corner of my kitchen cabinets, but until the labs come back in…I’ll just chalk it up to another adventure caused by cancer.

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Wall of Hope

Normally around Christmas time I find myself inundated with stacks of seasonal cards, all so very pretty but I can’t quite fathom keeping half of them beyond the holiday season.  (There are a few, those with pictures and such, that I put into memory albums, however)  To fully enjoy them the wall above my desk, around the fireplace, and sometimes flanking either side of my front windows get lines and lines of cards full of Holiday greetings.  I keep these there for several months after Christmas, which is why I haven’t bothered with Christmas lights yet–as I’d likely be that annoying neighbor that didn’t take down their lights until early May.    This is something I’ll likely continue to do, but this year those Christmas cards have a little competition.

It’s slowly growing, and none are the same.

I call this my little Wall of Hope.  All of these cards have a different message of well wishes and prayers, encouragement and hope.  They’re nothing like Christmas cards, as they’re far more personal, and tend to go beyond signatures.  There are cards from friends and family, people I’ve met online, nurses that have treated me, Girl Scouts whose kids have gone to my camp, and many more.  I keep this above my desk (along with my children’s school calendars, of course) to remind me that I’m not alone in this.  Sometimes it feels a lot like Atlas balancing the world precariously on your back, but even he had the whole population of that planet to keep him company.  If not at least a little amused.

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Watching the clock

The longer I’m here in my cozy hospital room, the more interesting noises I discover.  The soft music that plays lightly over the com system whenever a baby is born.  The constant sharp beeping that comes when a patient’s IV system runs low on medicine.  The odd ‘Mary had a Little Lamb’ tune that I’ve been hearing lately that is apparently in direct relation to a patient who’s trying to frequently leave his bed when he’s not supposed to get up without assistance.

But the one sound I’ve come to look forward to is the loud roll and rattle of the portable x-ray machine.  A big bulky thing on small swivel casters that sounds like it’s shaking apart as it goes over the creases in the floor that separate the hard wood floors from the new berber carpet.  This heavy machine is typically wheeled, somewhere between 6 a.m. and 7:30 a.m., into my room where they take a keepsake x-ray of my chest before wheeling away once more.

An x-ray right now is the only thing really keeping me here.  The tiny air leak in my lungs is apparently visible  on this picture, and is the deciding factor on whether or not I get to go home.  Each day it gets a little better, the possibility of going home the next day dangled in front of me like a carrot on a string held before a hungry donkey that is otherwise too stubborn to move.

This morning I wait, again, eyeing the clock to see how long it’ll be until the x-ray machine rattles down the hall.  There’s a distinct possibility of going home today, and this time it’s looking more definite.

Now…whether or not I’ll be returning home with the chest tube or without it is an entirely different story.

While waiting here my mom brought me her beaubeaus for when I lose my locks once more. If they don’t let me out soon they’re going to have a crazed orange pirate running around the halls declaring war on all the IV poles and mismatched paintings. It’s mostly the fault of the fine hospital dining, I’m sure.

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Lessons learned from my nurses

So, while I’ve been sitting here in a hospital bed for…going on 10 days now, I’ve had many chances to meet the several nurses and CNAs that work here at the hospital.  Many I see frequently, others only at night, and then there are those that only come in for that short 2 hour shift in the evening.  There are some who are talkative, some who are all business, but for what it’s worth they’ve all been generally quite kind.

Some of them have also had some interesting stories to tell.  From these stories I’ve gained the following important tips when you are going to be working 1 on 1 with a nurse.

• Don’t yell into the stethoscope.  Because…while you might think  it’s funny, your nurse has likely seen this happen several times and it’s very very likely that it’s gotten downright old.
• If there’s one thing I’ve learned it’s to not go out of your way to make their day a bad one.  They’re the ones that poke your veins, assist your doctors, and also bring you your medications. As one nurse told me about what she told a gentleman who was purposely getting on her nerves, “Sir, if you want the catheter lubricated when I put it in I suggest you start treating me more like a human instead of the butt of your jokes.”  (Trust me….especially guys: You want that lubricant.)
• There are differences between types of nurses.  While I have CNAs and RNs directly dealing with me while I stay here, that doesn’t mean there aren’t other types.  RNs are registered nurses while CNAs are certified nursing assistants.  Main difference?  RNs will poke you and provide your medication, CNAs will check your temp, blood pressure, and the oxygen levels in your blood.
• Nurses are apparently intimidated by expert patients.   I had no idea this was true, but apparently my knowledge can surpass theirs in some arenas, which isn’t something frequent among the non-medically-educated masses.  All things considered, I guess that could be intimidating.  So be nice to your nurses, even if you know more, they’re still in charge of where your next IV line goes in.

In summary?  Treat em’ nice.  They do a whole hell of a lot to make your stay a good one, so at least remember to give them the benefit of the doubt if they’re running their feet off trying to get your meds to you as well as meds to about 30 other rooms on the floor.

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