IVs, Ports, and Tunneled lines

While I’m sitting here doing my best to wait patiently for news on when I’ll be starting chemotherapy I’m finding that I do a horrible job of not looking online for information regarding my upcoming procedures.  A few weeks back I found out that my chemotherapy will likely be a short one; once a week for four weeks.  This is a new experience for me, shockingly enough, and it seems so blessedly short in comparison to the other types of chemo treatments I’ve done in the past.  Now, I haven’t the foggiest as to how long these individual treatments will be … could be an hour, could be up to six.  Either way it’s only once a week, which leads me to wonder…will it be a strong chemotherapy?  Or will it be a relatively weak one?  In my unique situation I find that my doctors like to take two approaches.  The first is “You’re so young!  You can survive a massive barrage and be able to bounce back!”.  The second being a more cautious approach of “You’ve been through so much, we have to be careful to give you something that won’t make the long-term side effects for you go horribly!”.  My current oncologist leans a bit towards the second, which I admit I’m appreciative of since a harsh chemo makes it a bit difficult to raise and take care of my two crazy children.

Still don’t know if I’ll be losing my hair, though I have to remind people that the types of chemo where you don’t lose your hair are few and far between.  By those odds I should be narrowing it down so that it’s my turn for one of those, right?  Yeah, I’m not holding my breath either.  None of my cancers are slow-moving, which those types of treatments are typically reserved for, so the chance of getting a therapy that spares my hair and nails and white blood cells is pretty much not in the cards for me.

As per my last conversation with my oncologist there are a few other things that aren’t in the cards for me as well.  For one I won’t be using a port this time through, which I’m a bit sad about.  I’ve never had a chemo go more smoothly than when I had a port.  The first two times I was treated I used an IV.  This was well and great the first few times when I was sixteen, but a little known fact by those who haven’t gone through chemo is that it makes your veins shrink.  Having great circulation is not something that frequents chemo patients, and for me it was typically only reserved for when I was pregnant.  My blood pressure is naturally low…approximately 90/59 is on the norm for me, so you can imagine my veins are near invisible.  Top that off with a little chemo and they shrivel up and hibernate.  After my first chemotherapy a few of my toes were numb for several months until the veins healed.  It was a bit odd to discover, when the feeling came back, that the shoes I’d been wearing were a lot tighter than I realized!

So, you can imagine, trying to get an IV line in for each chemotherapy is a bit of a hassle.  But back then I was terrified of the idea of a line going straight into my heart.  In fact, I was afraid of surgeries in general, so knowing I’d have to go through one just to get the port in garnished an immediate “NO!” from my teenage and early twenties lips.  After my mastectomy, however, I finally budged, figuring that if I could handle a mastectomy putting a port in should be a cinch.  One of those few times I ended up right, thank goodness.  It made chemo easier and less stressful.  I’m not typically needle shy, but when you have a nurse poking your arm several times (and only having the option of one arm to poke) it begins to really affect you.  Not only does your arm end up bruising, but the more times you’re poked the more chances of hitting a nerve and causing a reaction that isn’t far from passing out cold in the chair.  Nerve reactions are things I dread…the heat flushing to your head, a sudden onset of nausea, and watching your vision slowly go black from the corners of your eyes moving inwards.  It ends up passing after a bit, but it’s a feeling I wouldn’t readily repeat.

You can guess that this makes me wary of using an IV for my approaching chemo treatment.  I relayed this bit of hesitation to my oncologist and was told that I would instead be using a tunneled line.  Despite my knowledge of the patient experience there are still things that pop up to surprise me.  I’d never heard of a tunneled line, and for some reason all I could picture was a tube forced under my skin.  No matter how I tried to imagine it I couldn’t exactly fathom how this would be pleasant or painless.  Finally, after a few weeks of an overactive imagination, I popped open Google and looked it up.

To my relief it’s very similar to a port–I won’t have some random tube tunneling under my skin.  However, it also includes the tubes sticking out of my skin.  This is something I have experience with after both my mastectomy and my lobectomy left me with drainage tubes out of my side for weeks following both surgeries.  It’s a feeling I can’t stand, knowing that if I move just wrong or if my kids bump into the wrong spot they might accidentally tug…yeah.  That.  I won’t explain any further.  It also means tape holding it in place.  Sensitive skin and tape don’t really get along much, as I’ve discovered over the years.

But, to be on the positive side … it’s only four weeks.  It’s not five months of chemo or a few years of it.  Only. Four. Weeks.  And that  is something that I can handle.

IVs, Tunneled Lines, and Ports. I do apologize for those who might cringe to this, I promise I found the least-er-grotesque image of these things that I could! (As Jenn said, “EEuuugh! Why did you show me that?!”)

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A letter to my 16 year old self

So, I saw this being done around the web a bit here and there, one of those things that randomly pops up and a good chunk of people hop on the bandwagon.  It disappears, and then tends to show up all over again about a year later.  Considering at sixteen I was in a rather unique situation, I figured I’d try my hand at it.

Me at sixteen with my friend and her brother in 1998, shortly before being diagnosed with Hodgkin’s Lymphoma

Dear…well, me,

Happy Birthday!  It’s me…you in about fourteen years.  Yep, we’re still tall, that doesn’t change.  Shoes and clothes are still hard to find, but in about four years you’ll discover a few places that actually sell your size.  So no worries, you won’t be buying men’s pants for the rest of your life.  Enjoy and savor that feeling of finding a pair of women’s pants that you step on because they’re too long, I know I do, even though sometimes it results with fraying on the hem.  The good news is that you’re still at least semi-OK with a sewing machine, so it’s nothing you can’t fix.

That aside, I wanted to step into a more serious topic.  Remember back in science class in junior high when they were discussing diseases?  Particularly cancer?  Distinctly recall thinking…”That won’t happen to me,”?  Yeah, we should probably talk about that.  The fact is that you’re not immortal…far from it.  In less than a month you’re going to find something that’s going to change your outlook on life forever.  A small lump just above your collar-bone.  To spare you the months it’s going to take for the doctors to figure out what it is, I’ll just tell you now.  Look up Hodgkin’s Lymphoma.  Telling you to google it would probably go over your head, so go to the library, check out a book on cancer.  Figure out where I’m going with this yet?

Basically you’re about to head down a long and rough road.  It’s going to make high school considerably more isolating, but I’m not here to write a letter that’s going to depress you into an early suicide because there’s hope.  A lot of hope.  See … you’re going to fight.  I’m not going to really give you a choice here, because without you I wouldn’t exist.  And the picture I’ve enclosed?   Those two kids wouldn’t exist, either.  That’s right, they’re yours.  Didn’t know you could make something that cute, huh?  Me either, it still baffles me.  Also, see that incredibly good-looking guy beside you with a smile to die for?  He’s yours, too.  So when you don’t get asked out to any dances the entire time you’re a teenager, or when you get turned down by the one guy you do ask…or when you find yourself depressed because none of your crushes reciprocate…?   You get him, and he’s worth it.  No, I’m not telling you whether or not he’s taller than you, either, because that won’t matter.  He’s amazing, that’s all you need to know.

On another note, when things start getting rough with your best friends–you know the two I’m talking about–try to be patient.  Try not to jump to rash actions when one of them starts to pull away.  It’s going to hurt, ending a friendship never feels great.  She’s scared, and what you’re going through…she has no way of understanding.  Some people will never understand and the best way that they cope is to pull away.  Find it in your heart to forgive, though, because she doesn’t really know any other way to react than lashing out.

Don’t wait eleven years to thank Jesse.  Hell, do it before High School is out.  He found the lump in your collar and if he hadn’t you wouldn’t be around beyond eighteen.  When it comes to Jenn…take her word first.  She’s never lied to you, nor has she had reason to, so if somebody else tells you something about her … take five minutes to think, remember to listen to Bryan (you’ll know who this is by the time you get to this point anyway), and then ask her instead of taking somebody else’s word for it.  The girl sticks her neck out for you, and you do as much for her…just…when this one time comes?  Do not go off writing one of your ranting letters.  Those things get you into more trouble than they’re worth.  Type them, get them out of your system, then just put them in the recycle bin.  Also, avoid discussing politics with people.  This gets you into trouble now and then and ends up not worth the emotional irritation.

Beyond that…well, the chips are going to fall where they do.  Give Shannah (Cookie) a big hug for me, make sure Grandma B knows you love her, and be patient with your mom.  I know you’re scared, but she’s scared too.  Remember what happened to your sister?  Everybody was afraid then, everybody will be afraid again…but you can get through it.  Just … patience.  You could really use some.  Try to stay positive and keep your chin up.  There’s a lot of good on the other side of this mountain, so just remember to bring your hiking boots.

And some chocolate.  Bringing chocolate never hurt you.

Sincerely,

Me.   Or you.  In fourteen years.

P.S.  – You could really do to stay away from the spiral perms, just sayin’.  They never get any better, so I’m not sure why you keep getting them.

Also, make sure this picture doesn’t happen. I’m begging you.

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Hospital Buddies

Over the last fourteen years of battling cancer I can say with certainty that one of the most overwhelming feelings that comes with the diagnosis is loneliness.  Most of those I know that are struggling with cancer personally don’t know many people inside their social circles that are going through the same thing.  Cancer, while unnervingly common in our society, is still rare enough that you won’t often run into a group of people already established as friends suddenly all being diagnosed with cancer around the same time.  I’m sure it may have happened, but it’s not a typical situation.  This is one of those reasons why there are support groups out there…if you don’t know anybody in your situation, these groups are out there to provide the links to possible friendships so that you can get to know somebody like you.

Now, I had the luck of having a best friend who was very much a hospital veteran by the time I was diagnosed with cancer at sixteen.  She’d been going through her own medical problems since junior high school and a lot of her medications were similar to the ones I would be taking during chemotherapy.  We had known each other since third grade initially, but due to my elementary school hopping we ended up in different schools until about tenth grade.  Long story short, we became fast friends and when I was suddenly facing cancer she was the only one who I felt I could talk to about all of the stuff I would be facing.  We jokingly called ourselves ‘Hospital Buddies’.

In my experience I feel that everybody should have a hospital buddy.  Not every hospital buddy will be a veteran of the IV pole, but a hospital buddy should be somebody who is a solid rock for you and understands exactly what you’re going through.  Especially when chemo comes to town.  A lot of chemotherapy treatments involve lovely side effects that tend to leave you unable to think clearly much less function well enough to operate a vehicle or chase down a bus.  So, in short, bringing somebody with you to those treatments is not only a morale booster, but also a necessity.

At sixteen I always had my mother with me–most of my friends could not make it because my infusions were during school hours.  It was rare, however, to feel lonely up at Doernbecher’s Children’s Hospital.  They made it a point to have the atmosphere as welcoming as possible for the patients treated there.  From board games to video games, books to toys, the patients were always provided for.  It wasn’t uncommon to see the kids running up and down the halls with their IV poles in tow, giggling and laughing.  They were never stopped by the staff or any of the adults.  In retrospect I can only imagine that seeing them with that energy and being capable of even running and smiling was much more important than making sure nobody ran in the halls, especially to their parents.  Most hospitals could and should take example from the way Doernbecher’s Oncology sets up shop.

I had this silly notion at the age of twenty-one when I relapsed that I would be entirely too grown-up to have my treatments done at Doernbecher’s…even though the offer was on the table.  Looking back, I think I should have opted for it.  I was greeted by a very different arrangement when I went to Kaiser Interstate.  The room was large with several beds that were separated by curtains, each having their own small television and a long row of windows behind them.  At first I was happy with the idea of having a television to watch.  It was peaceful, which I didn’t mind, and I was a bit shocked at how few patients there were alone, quietly reading books or flipping through magazines.  For me, traveling to Interstate was a lot shorter and more convenient than driving all the way up to Doernbecher, especially since I was facing chemotherapy during the winter instead of the fall.  This meant, of course, having somebody drive me there.  Even with the closer distance it was still a trek across the river from the East part of town…at best I had a thirty minute commute, mostly by freeway.

For the most part the nurses didn’t seem to mind as my mother drove me to and from most of my infusions and sat quietly with me at my bedside.  I was doing chemotherapy three times  a week, then I would have three weeks off and then start the whole thing over again.  The third treatment on my first week of infusions I had the pleasure of having my boyfriend in town to drive me there before I was due for a head shaving party the following  evening.  As it was he lived a good two hours away from my parent’s home, so commuting to Interstate tacked on an additional thirty minute drive that nipped at his gas tank.  Per my previous two days routine, he joined me as my mother had joined me, settling down to sit by my bed to keep me company for the six hours I would be enduring my infusion.

At this point a nurse meandered over and informed me that I was not allowed visitors in the infusion area so that none of the other patients would be disturbed.  I looked to my left and right … there were exactly two other patients there and we were largely spaced out.  Friday was not typically a very busy day there unless a three-day-weekend was approaching.  Before I could argue, my boyfriend left, assuring me that he’d stick around in the cafeteria and keep himself busy.  I was incensed, not at him, but on behalf of him.  My treatment was six hours long.  He had driven for a total of two and a half hours and he didn’t live in the area, so he had no idea of what to do aside from sit and wait outside.  Not to mention that he hadn’t brought a book or anything because we’d planned on sitting and chatting quietly or watching whatever daytime television looked mildly amusing together.  Neither of us had a laptop, nooks and kindles didn’t exist, and we didn’t own a portable gaming device of any sort.  I wanted to argue and throw a fit.

…and I didn’t want to be alone.  Chemotherapy can make you overly emotional, so while I was feeling miserable sitting there for six hours I seemed to end up doubly so.  Half the time I caught myself hiccuping sobs, blinking back tears, and glaring at the nurses as they walked by.  I could turn the television up alarmingly loud and nobody would blink, but for some reason my boyfriend couldn’t walk in and simply sit next to me without the nurses getting up in arms.  After six hours of this building up I was on the verge of a breakdown.  When my infusion was over  I was unhooked from my IV and led into a room to see a video on giving myself shots of Neupogen to help my white blood cell count.  To my nurse’s surprise I wasn’t fully coherent (third day in a row of chemo at this point), was over emotional, and had been building up a good adult-sized tantrum for the entirety of my infusion that day.  They saw that I wasn’t processing the video fully, so they pulled out a cork and told me to inject a needle into it to help me understand.  I stared at the needle, couldn’t help but make the connection that I was going to have to do this to myself (a brand new experience for me), and proceeded to outright bawl.

For ten minutes they tried to reason with me, but all I did was sob.  I couldn’t get the needle into the cork and kept fumbling it onto the ground.  The video was making me cry about absolutely absurd things.  The nurses took my boyfriend away.   Not the most reasonable thought process, but chemo can mess with your brain on so many levels.  Finally they broke down and brought my boyfriend in.  He watched the video with me and then helped me home.  The following night he help me cope with giving myself my own shots for the first time.

I want to point out that this wasn’t typical of my treatments.  After that I was never given any problems with bringing one person with me to chemo.  Even with that said I should have gone back to Doernbecher’s.

Breast cancer offered a whole new situation.  At this point I was a mother of two, happily married to said boyfriend, and very much off of my parent’s medical insurance.  The insurance provided by my husband’s job led us to the Vancouver Clinic for my treatments and I couldn’t have been happier.  Though I’ve never planned on bringing in a fist full of people with me to my treatments, they had no qualms in my having guests.  The infusion lab is smaller than that of the lab at Interstate and yet the nurses’ were constantly asking if they could search out a few more chairs for me should I have more than one guest.  They even offered snacks to those with me.  Our chairs were faced out so that we could see outside and even though my view was of the large parking lot it certainly beat staring at the nurse’s station while they tried to work.  I imagine that would be a little unnerving for them, too.

So, my advice?  Get a hospital buddy.  Assuming you can bring one.  If you can’t…honestly I’d say bring one anyway and throw a fit or something, because nobody should go through this alone.  (Come on, my advice can’t always be sage and useful.)

This is my hospital buddy. It’s just a shame that Nebraska and Washington aren’t easy commutes, so we have to skype to make it happen. It still works though!

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Another reason to feel blessed

This young man (I can say that, he was born two months after I was) is an absolute inspiration.  I would encourage all to view this video not only because of his unique situation, but in how he and his wife handle it.  Ryan Woods passed on today around noon and I think stories like this, experiences like this…should never be forgotten.

God bless and may you rest in peace.

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What if…?

So I was driving my kids to school today and this sorta…popped into my head.  I don’t usually do two posts in one day, but it had to be put down somewhere and I feel it’s a bit too big for Facebook.

What if…?

I once was asked if there was one wish to make
Would it be that my cancer had given me a break.
That instead I was a teen who had not a care
Without all the appointments and a head full of hair.
To do as I pleased once out of school
To travel, experiment, to make my own rules.
I’d never once have to wake up in the night
Where my joints ached severely and standing, a fight.
No chemo induced illness, no fatigue or depression
No radiation and cancer’s unnerving progression.
To take life by the reigns, make my own quests,
Perhaps my husband might get a wife with two breasts.
The only worry my parents may know
Is if their daughter on Christmas might be bothered to show.
And insurance money that would not be spent
Would go to the people far less fortunate
For those patients the nurses would now have more time
There’d be one less fighter standing in line.
At night my doctor would not have to find
A treatment for me that to my body would be kind.
No invasive surgery, no hospital stays
Instead off to England and Ireland for a few days.
But to my friend’s surprise my answer was so:
I shrugged, splayed my hands, and simply said no.
For if cancer had never been part of my life,
I might not have been my husband’s wife.
To college I might not have ever gone,
For insurance I had to go full-time or have none.
Without this I might never have met
The man who I married, and that I’d regret.
My children, I might have, but not quite the same,
Different father, different city, perhaps different names.
And while I would love them as I love my two,
Replacing their faces, I just couldn’t do.
Without all of this I wouldn’t have my home,
Or all of my in-laws and some friends I have known.
My understanding of illness would severely lack
My compassion for friends thus would be off track
No hospital buddies, no survivor friends
No relays, no support groups, the list doesn’t end.
While cancer is something I’ll always wish gone
I would not be me if something hadn’t gone wrong.
For sometimes the worst always brings out the best.
But if you know me, well … you know the rest.

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