This last week has been a blur. What a hectic 10 days it’s
been. You know, I’m really a low maintenance low key kind of gal (the
low maintenance ship sailed many diagnoses ago). I enjoy staying busy and being
with family and friends, but I’m perfectly content to hibernate for days at a
time with just a good book, my laptop, internet and ice cream. I’ve been
itching to jot down my thoughts and the events of the past week and a
half, but between appointments and
sedation it’s only now I’ve had the time and clarity to do so. Better late than
never I guess.
This last week the reality of how my PTLD diagnosis could
potentially alter my coming weeks and months became clearer. Almost like when
you cut yourself. There’s that momentary numbness right after the incident and
right before the pain. Like two summers ago I decided I was up to the task of
cutting a watermelon – with the new cleaver-style knife I’d gotten through
Groupon. I whacked away at that melon with the finesse of a 3-year old trimming
their hair – when, with one slip, my giant knife met my itty-bitty finger. Or
when my food processor blade bit me. The initial blow stung, but it wasn’t
until I pulled my hand away and misted my face red that the sickening feeling in
the pit of my stomach deepened, followed closely by the full impact of the
injury and persistent pain. (The cleaver and I are still not on speaking terms,
the food processor and I have since reconciled).
Processing this diagnosis and all the information that come
with it feels like a similar progression, nowhere near as gruesome. I’ve had
this blessed soul anesthesia – it’s allowed me to be clinical, reasonable
(mostly – the carb-free day being an exception), and pragmatic. My Google
search history is chalk-full of awesomeness – haircuts, unicorn hair color
(much to my mom’s chagrin), wig research, lymphoma message boards, cancer
articles, research abstracts, chemo and DPOA documents to name a few.
It’s my way of processing, my way to have my ducks in a
row, plan, take control of what is a situation I have no control over. No –
that’s wrong. I do have some control – in how I react to this new life
adventure, how I choose to move forward with this diagnosis and treatment, how
I choose to embrace the purpose God has for me and Whom I choose to trust. Oh,
and whether or not to color my hair like an Easter egg ;P
I spent some time away early in the week with my mom for
therapy – of the retail and laughter variety. Two days spent laughing and
talking, shopping and eating. I expected
the time away to be a PTLD-free zone. No talk of lymphoma or treatment – only
fun and frivolity. I was right… and I was wrong. It was fun, but lymphoma doesn’t
take vacations and the topic was never far from my mind. Talks about lymphoma
and treatment possibilities made their way into our conversations. It’s hard
not to – and I’m glad it did, because it gave us a chance to explore the
hypothetical, possible and probable in candid conversation in a safe space….
with the aid of cheesecake. ‘(Just a spoonful of sugar helps the medicine go
down…. ‘)
Reality bit, err, hit¸
upon my return home with Wednesday’s bone marrow biopsy. I’d heard multiple
accounts of how dreadful the procedure was – and I was looking forward to
having it behind me (which is exactly where it was done). ;) I can think of
other ways I’d prefer to spend my time, but really, it wasn’t as bad as I’d
anticipated. The IV sticks were the worst part pre-procedurally. That and the
early morning scavenger hunt they sent me on upon arrival. They gave me a cup and asked me to fill it
with some vague mention of a hallway, a wood floor and to my right. To be fair,
it was early and I wasn’t caffeinated. I’m pretty resourceful – but after wandering down two dark corridors and
finding no water spigot I decided the hunt was too exhilarating to keep to
myself and recruited help in finding that elusive room to the right with a wood
floor (I never did find the water fountain, but somehow I filled my cup). But I
digress – bottom line. Praise the Lord
for His peace and comfort and for anesthesia’s sedation - the procedure wasn’t
as bad as I anticipated! I guess I should have been better prepared, the nurse
I talked to told me I should expect to feel like I’d run into a sharp object
with my hip. I’ve had years of practice bumping into things ;) It wasn’t so
bad, I don’t have any powerful urges to make a repeat performance, but it’s
been very tolerable. I’ve been rocking pants with elastic waistbands and a week
later I’m still sitting a little more carefully and conscious of some derriere
discomfort , but otherwise I’m no worse for wear.
What really stands out to me about that day was hearing my
nurse’s take on my situation. While she fished for a viable IV site and I
recounted my health history – apologizing for being a difficult stick her
comment was ‘it’s understandable – you’re one sick young lady’. Strange. In a
day of multiple IV sticks and bone marrow ‘core sampling’ that’s what really
stung.
I spent Thursday afternoon hair shopping. Yep, hair
shopping. Chemo seemed to be a real possibility based on the conversation with
my oncologist two weeks ago and I wanted to be prepared. For anyone that knows
me well or has ever met Gertie you’d expect a room full of wigs to be akin to a
kid in a candy shop (or for that matter, me
in a candy store). It was an impressive array of hair. No matter how I hyped it
or the enthusiastic responses to the different do’s I tried I couldn’t shake
the reality – I wasn’t picking a style for a new flamboyant character to
introduce at church. That’s fun – the outlandish allows me to say and do things
with the safety of a pseudonym. I mean, shucks! Gertie sees every man that’s
upright and breathing as a potential dating possibility – she makes Farmer’s
Only.com look likes child’s play. I on the other hand…. My doctor described me as being one of the ‘unlucky’
few to never have had EBV, better known as kissing disease – Need I say more?
After finding suitable hair and headwear I spent the car
ride home comforting myself with the Brightside of proposed hair loss. This is
what I’ve come up with so far:
1. I love
hats
2. Big fan
of scarves
3. Everybody
loves Mr/Mrs Potato Head and they rock their look sans hair
4. I
could save a bundle on waxing
5. My
eyebrows could reflect my mood or artistic flair any given day
6. I
could change my hair on a regular basis
7. No
more bedhead
8. It
would be cooler for Spring/Summer
9. Save a
bundle on hair products and hair styling time
AND finally….
10. I can
bring my legs out of hibernation – they’ll be beach ready at all times
I almost had myself convinced. But to be honest, it was the
first time I really had to fight tears.
I may have waged a love/hate relationship with my curls for the last 29+
years (I rocked the cue ball look my first 3 years of life), but the
possibility of losing it has given me a new appreciation for my hair.
Like one friend pointed out – hair loss related to chemo
makes your illness evident to the world around you. It’s true – I’ve spent
years trying to seem as normal as possible in regards to my vision. So much so,
that when I was still able to work, some of my co-workers were unaware of my
low vision – asking me to decipher Physician’s handwriting for them. It was a
point of pride for me. As long as no one knows I’m ‘sick’ than I’m really not.
Maybe that’s as naïve as thinking if I can’t see you, then you can’t see me. ;P
There’s a certain vulnerability to displaying our weaknesses – It’s humbling.
Maybe that’s why I relate so very much to Paul when he
writes in 2 Corinthians 12:9-10,
But He
[Christ] said to me, “My
grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all
the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in
weaknesses, in insults, in hardships, in persecutions, in difficulties. For
when I am weak, then I am strong. ‘
Maybe my diagnosis will be evident this summer, maybe it
won’t. But I do know that God is writing the story of my life and I want my
life to reflect the hand He has in it – Whether that includes bed head and bad
hair days or silky smooth legs and a bald head (just one more reflective
surface).
Holding on to my humor,
Vanessa ❤
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