Sunday, August 29, 2010

I'll Have a Side of...

I have this same sign in my classroom!  
You know you're special (or have a truly serious illness) when you don't have to wait in a waiting room of an ER.  I sure know I'm special (or have a truly serious illness) because this morning, I did not even go near the waiting room!  They took me back right away and within minutes, I was in a gown (open in the back) in my very own private (glass doors and everything) room in the ER triage department.

It's important that I mention that this was at Abington Hospital (NOT an urban center of round-the-clock crisis) and I went in at 9 am on a Sunday morning.  But still...

I'd been having some itchiness at my port site for a few days, but the skin was dry and there was nothing noteworthy emerging from the needly-prick scab.  Then, this morning when I woke up and it was still itchy, I noticed some redness on the skin.  I called the doctor's answering service and was told to go have it seen at the ER to rule out infection.  Apparently an infected port is a big deal.

Luckily, the attending physician did not think it was anything beyond some contact dermatitis (I'm not going to lie, I do enjoy learning all of these fancy new words) and that I probably had an allergic reaction to whatever they used to access my port last Tuesday.  All I need is a little Benadryl cream and I'm good to go.
Me and my new friend, John.  We traded important bald secrets.

I was fortunate to be treated by my nice friend, John, pictured here.  In all honesty, I'll take a bald man over a pregnant woman any day of the week and twice (or once, as the case may be) on Sundays.  It makes me feel like I have hairless comrades (who are not "expecting") in a world where everyone seems related to Rapunzel or whose belly button just popped.

After having only left the house once in the past 12 days (to go to the very exciting home of my parents), I was giddy at the thought of leaving the ER to do some shopping (no child with me, just me and my caffeine and contact lens-deprived mother).  Whole Foods!  What a thrill.  As this was the longest period of time I'd been on my feet in almost 2 weeks, my leg muscles were a bit shaky.  It's so bizarre that yet another one of the side effects (indirectly) of all of this is weakness.  And even though I'm supposed to be strong (can you see me pumping my fists?) and focused, I'm just trying to push a shopping cart through a stupid supermarket.

I was saying to my mom this morning, en route to the ER, that I would bet there are people in the world who would willingly sign up for this kind of challenge.  It's that same type of person who does crazy things like bungee jump or compete in decathalons.  The yeah-right-cancer's-not-so-tough-I-know-I-could-lick-it kind of person might volunteer for this.  I am not one of them.  I don't like to run (or walk, really), or do most things that would bring about a sweat of any kind.  I like to read and write and craft and shop.  Call me lazy, call me a nerd if you will (I'm not offended, but I am relaxed!).  I just don't find joy in a physical challenge (Walter's Wiggles was for you, Daddy) and I'm certainly not finding this particular Double Dare episode of cancer all that pleasurable.

It might be all the side effects.  Aside from the usual nausea and fatigue (although I did hear through the grapevine that some people don't even get the nausea -snarl- and most others actually respond to the nausea meds), there are a plethora of other interesting and time consuming side effects of having cancer and being treated with chemotherapy.  I might have appreciated a heads-up.  So for those of you reading this who are just starting out on your own cancer journey, don't say I didn't warn you.

Cancer/Treated with Chemo:
Common side effects: nausea, fatigue, pain, bone aches, baldness, taste disturbance.

Possible side effects (of the common side effects):
-all encompassing loss of appetite 
-loss of appetite for anything remotely healthy
-dehydration (occasionally caused by crying)
-severe nausea
-frequent inability to form a coherent sentence aloud or recall words (heavy use of the word "thing")
-muscle soreness
-headache
-low grade fever
-sweats
-chills
-tingly/numb fingertips
-poor circulation (your hands will fall asleep if you try to hold a book up in front of your face for too long)
-blood clots
-sores in your mouth, etc. (according to the nurses, your "mouth" stretches all the way from the hole in which food enters your body to the hole where food exits your body)
-acid reflux (including persistent belching, talkative tummy and the simultaneous sensation of hunger and fullness)
-fuzzy vision (inability to read the cable tv guide at the bottom of the screen)
-memory loss
-tummy aches
-pill anxiety
-pill withdrawal
-difficulty swallowing
-diarrhea
-constipation
-weight loss
-weight gain
-irritability
-anxiety
-depression
-insomnia

Call your doctor right away if any of the following occur:
-fever over 102
-anything swollen, red, hot, itchy or exuding pus of any type
-percocet doesn't help
-no pooping in a week
-too much pooping in a day
-strange bruising
-your employer wants you to visit their doctor
-you haven't gotten a call back within 20 mintues
-you need to know you're normal and that even though you're extra sensitive to everything, he and his team are there for you

***

During our office visit last Monday for fluids, Dr. Henry (just back from vacay) sat with us to answer some questions about the next few months and we did get some encouraging news.  First, I don't need to have any more scans until after the 6th round.  I will have a CT/PET 3 weeks later (mid-October) to see how well the chemo worked.  Then, (since he is leaning towards doing the radiation therapy) I will probably have 2+ weeks of daily radiation for 15 minutes each day.  The only side effect he gave me was fatigue, but I'm sure I'll come up with something else.

Dr. Henry also explained why he believes I must taper my Prednisone dosage in order to avoid withdrawal symptoms (such as my tumor swelling so large it causes difficulty swallowing: see Possible Side Effects, above).  Apparently I am one of only 2 patients he's ever had to have this problem (at least I'll be memorable), whereby when I stop taking the drug at it's high dosage of 100 mg after the first 5 days, my adrenal glands do not turn back on -like they're supposed to- to start producing the body's natural version of Prednisone.  So I really am special (in addition to having a serious illness)!

Finally, the best news we got was an answer to the question: when can we start trying to get prego again?  Dr. Henry, oh dear, sweet Dr. Henry, said right away.  So after the chemo and radiation are completed, as soon as I'm feeling up to it, we have the green light to get back into the baby-making game.

I know you were all wondering, but afraid (and rightly so) to ask.  The whole privacy thing is an issue for another post.  Not that I was ever shy to tell people about the intimate details of EVERYTHING, but when you are going through fertility struggles, other peoples' curiosity can frequently stir up your own heartbreak and just plain old piss you off.  As I've heard from many people who went through similar fertility issues, I know I have a crowd behind me on this one.

I realize I am a particularly greedy cancer patient.  Not only do I want my own life back, but I want to create more.  Call me crazy, but I have spent my life wanting to be a mother and I will do everything within my power to increase the size of my family and give my son the sibling(s) he so desperately desires.

As we close on summer vacation (Dan goes back to work tomorrow, waaaah), I am relieved to see that there has been actual passage of time.  This is surely the first summer of my life I have not been sad to say hello to Fall (okay, except for the year I got married, but that was different - everything then was going according to plan).   It's hard to believe that this all started at the end of May and that now September is just a few days away.  Even though I'm not done with treatment yet, I've passed the halfway mark and I can look back on the past 3 months as a survivor.

xxoo

3 comments:

  1. As always, beautifully written, well done! I have the matching picture of you in your classroom, under the sign....wish I could post it here...look for it on my facebook page soon, my friends. xxoo

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  2. Great job, MAGNIFICENT ONE,
    you're on the backstretch,reserved
    in a pounding stride, angling into
    the far turn, where you will, start
    in to kicking toward that winning post.
    MIA, all the selectors TOP PICK!
    We love you so, kiddo,
    GG and Uncle Larry

    ReplyDelete
  3. Mia,
    You look so pretty in that pic!
    Way to go, making it through one crappy summer.
    I want that sign for my classroom!

    ReplyDelete