You Have a Glow About You.... Isotope Radiance

This song, Hungry, seemed especially appropriate in my current condition – By the time you read this I will have been without sugar, carbs and caffeine for nearly 40 hours. The struggle is real folks.  I have this dear, wise, friend who sometimes shares his time tested wisdom with me. He once told me that a honey bun at the start of each day gives a person sparkle, if this is true, .I fear today I will be a little lackluster. I also have a dear roommate who is getting to know me well – she hid all the baked goods – which was smart because I haven’t been able to get her cinnamon rolls off my mind!

But seriously, the song is fitting for more reasons than my personal lusterless (hyper-dramatic) crisis.

The results I glean from today’s PET scan will set the course for my next treatment steps I take in this cancer journey. I’m nervous – staging my cancer makes it all the more real. Today’s tests have no effect on my health – but the results they produce shine a light on the degree of my illness and that’s difficult to deny.

As far as tests go, today’s was relatively easy – any time sweats are the dress code I’m your girl! My glowing personality got a boost from a little bit of isotope radiance (cue Radioactive), but this evening I feel like I’ve been to the cleaners – my body feels wrung out, and my brain feels water-logged.

I’ve been spending most nights online into the wee hours researching my illness, trying to find online message boards and support groups to get a handle on what I can expect and thinking on the decisions I need to make in the days to come – some decisions are easy. Ice cream or no ice cream – Hello? Really, never say no to ice cream! But others weigh a bit heavier – potential side effects, and long term effects of treatment…. It’s a long list – it’s not making me anxious, but the cumulative effect of the last week and the sum of my thoughts makes me weary.

Matthew 11:28 “Come to me, all you who are weary and burdened, and I will give you rest…’

Maybe that’s why the Lord brought this song to my mind today – I had some free time to think while I was in the scanner ;) These sweet words are like balm to my soul – The Lord is my strength and the source of my renewed energy – He is the source of my hope, because He is HOPE!

‘Hungry I come to you for I know you satisfy. I am empty, but I know your love does not run dry. I am empty, but I know your love does not run dry.

So I wait for you, so I wait for you… I’m falling on my knees offering all of me. Jesus youre all this heart is living for.

Broken I run to you for your arms are open wide. I am weary but I know your touch restores my life.’

So tonight as I fight heavy eyelids and a foggy noggin, I’m grateful that though I have thoughts spinning in my gourd I also have a reliable confidant to take those concerns to. Not to mention the blessing of some wise counsel in the form of family and friends!

The picture is a screen shot my dad texted me today – it’s from Psalm 119. I just love it when God uses others to encourage me in such tangible and beautiful ways. I also found a cheery and gorgeous touch of spring on my table from a sweet friend tonight. It’s not necessarily the ‘stuff’ about it, but the blessing behind the sentiment lightens my heart and gives me further reason to praise God for all the gifts He places in my life!

Odd huh? Too saccharine sweet? Sound a little too Pollyanna for you? Don’t worry, I suspect if you wait long enough you’ll be privy to my public rants and pity fests. I’m not perfect; nowhere close; but the reason for my gladness is and He is good to show me the glitter in the midst of the grime. (Glitter – ooh, honey buns!) ;)  Speaking of, some of you have inquired as to my dietary status. I relieved to report that there was only one hangry episode, bordering on minor meltdown. Thank you for your prayers for my Mom!J I’m no longer banned from my beautiful carbs! I’m happy to report we were reunited late this afternoon! Bless Mom – she knows me so well, I had a French baguette half-way inhaled before she’d handed me the take-out bag. She showed good judgement by offering a heartfelt, but condensed prayer to bless my food.

I’m thankful for the lifted carb ban and bread, but I’m so glad for the Bread of Life – the God who sustains, satisfies and provides – in the midst of seasons of calm and seasons of trial!

May your day contain luster (God's provision and the yummy carb kind).

With 'glowing' regard ;)

Ness

Is Weengry a Word? 1st Appointment with Oncologist

I'm feeling eager to get some answers – I hate the not knowing, and googling isn't and especially coming past time! And well ready to have some answers I'm anxious about what kind of worms that will unleash!
I think my cousin said it best when he had a face to face encounter with the snake " I wouldn't feel so inclined to hate all snakes – those sneaky critters, if God had put a bell around their necks. " I think the same could be said about the unknown… And cancer.
I don't know what the day holds, but I know who holds me!
Fear not for I am with you, be not dismayed for I am your God, I will strengthen you and uphold you in my righteous right hand. Isaiah 41:10

It’s late, I had intentions to write down my thoughts form the day much sonner, but instead, I took ate ice cream and took a nap – I know my priorities are right on track right?! ;)

As this day comes to an end I’m tired and suffering from a bit of SBS – soggy brain syndrome (yeah my gourd is a little mushy). But today was one I won’t soon forget and I hope you won’t mind if I share a few thoughts I am struck by, some irony and answered prayers.

Today my cancer was confirmed…. Hmmm, wait right there.

• Thought #1: ‘My cancer’ – Less than a week into this diagnosis and I’m already staking claim. Either I’m super adult taking ownership (or is that responsibility) or my only child syndrome is more far-reaching than I realized. ;P Yes, I have cancer – but while I may call it mine, I don’t plan to play accommodating host. I’ll be glad to relinquish claim if or when the Lord sees fit.

Nonetheless, lymphoma is my new reality. I’m in uncharted waters, outside the shores of my relative comfort zones (comparatively) - kidney transplant and vision loss. Today realization of what this diagnosis means and how it affects my foreseeable future became a little less murky. Until today I’ve been able to have a certain measure of disconnect; dealing in mere hypotheticals. Disconnect has its place, but I’d rather know. Call it a control thing, but I don’t like to dwell in the ‘what ifs’, but rather, what is. Today, I got a step closer and had an answer to prayer along the way – God showed up and He showed Himself faithful!

My first impression of the clinic raised my anxiety a bit – I know, don’t judge a book by its cover. But – were this clinic a book it would be a Tolstoy novel – intimidating. The atmosphere was disorienting and the décor sterile.

• Thought #2: Is it weird that I expected a cancer clinic to be cheery?

• Thought #3: I asked for prayers for clarity this week. That can encompass many ongoing issues, but one of great concern to me was whether I would be able to clearly understand the oncology/hematology specialist and the information he was presenting. PTL…Within minutes of meeting my oncologist (yeah, I’ll claim him) my concerns were put to rest.

He was kind, personable and professional, took time to listen to my history and was willing to endure my great inquisition (a two-page list of questions). He was open and forthright and shared my pathology findings with me, providing clarifications when needed. I can’t truly express what a gift that seemingly simple answered request means to me. If God cares enough to eliminate language and understanding barriers, when that is just a small piece of this complex puzzle – how much more must He care about the big things and all the in-betweens!

Isaiah 40:26 ‘Lift up your eyes and look to the heavens: Who created all these?

He who brings out the starry host one by one and calls forth each of them by name.

Because of his great power and mighty strength, not one of them is missing.

Doctor T gave me a better understanding of my disease process, prognosis and causations. The specific Post Transplant Lymphoproliferative Disorder (PTLD) I have is Diffuse Large B cell Lymphoma – triggered by Epstein Bar Virus (EBV). The same virus that causes Mono, which is commonly known as Kissing disease…. The irony of which, is not lost on me.

• Thought #4: Perhaps it ranks me among the most peculiar patients on record, but sitting there, faced with the reality of my cancer diagnosis all I wanted to do was… GIGGLE! ‘Never Been Kissed’ wasn’t just a 90’s chick flick, it could be the title of my autobiography. KISSING disease was the culprit of my cancer – Talk about adding insult to injury… I couldn’t make this stuff up! But I digress.

• Thought #5: Did I mention my thoughts are a bit…… SQUIRREL! ;)

All, in all, I came away from my 1st appointment knowing more than when I arrived. Over the next two weeks I’ll have tests to determine the nature of my disease and tailor a specific treatment plan. I’ll have a PET scan to determine the lymphoma staging and a bone marrow biopsy to rule out spread to the marrow. Chemo will follow.

Along with outlining the next few weeks, the oncologist shared some of the statistics that surround this disease. However, I’m hesitant to throw out specific percentages and odds for 4 reasons.

1. God’s power isn’t confined to a man-made box and he’s certainly not limited by statistics.

2. It’s all guessing until further testing is completed…. And even then – see point #1.

3. The last friend I shared my PTLD probability with suggested I visit Vegas with my ‘un-freaking-believable’ knack for hitting every unbelievable odd known to mankind. I’m still giggling – not to mention, I like the idea of a girl’s weekend. ;)

4. Numbers really aren’t my forte (my pre-calc tutor told me so) – if it requires counting higher than what my fingers can supply, forget about it!

But I will say that the oncologist was cautiously optimist, saying that more often than not - patients with PTLD experience complete remission!

I’ve been taken off one of my immunosuppressant meds completely and I have an idea of what the next two weeks will look like – labwork, tests and doctor’s visits. Educating myself further on this disease, nutritional support and resources.

• Fun Fact: Of all the concerns and risks that accompany this diagnosis, I suspect I’ll find weaning myself off sugar to be among my least favorite. Alas – I still haven’t found substantiated evidence for an ice cream diet protocol – I asked!

I’d continue to ask for your prayers – for wisdom for everyone involved, for clarity, peace, and for unwavering faith and commitment to reflecting Christ!

In the meantime, I plan to enjoy my days of ‘normalcy’, yet untouched by treatment and the side effects it brings with it. I think I’m holding up pretty good, thanks in large part to Christ. I know that He’s the responsible party for my sanity, because the lapses are all to my credit. Yesterday after skipping breakfast, due to nerves and spending the better part of the morning meeting with the oncologist, schedulers and phlebotomist I had worked up an appetite - I was hungry. Nope, that’s an understatement, I was Weengry. You know, irrationally weepy because of hunger and fatigue. What? Not familiar with that term (neither was my spell checker)? ;P I pointed out each eating establishment we passed heading away from the cancer center. But we were on a mission to get my smart phone fixed (I say we, but at that moment, I only had eyes for the 2nd Taco Bell we’d passed). Earlier this month I’d dropped my phone on the cement slab leading to the corals. Crap! Quite literally and Crack! My phone did a screen dive. *SIGH* *WHIMPER* *FOOT STOMP* Fortunately I had insurance, which unfortunately, required an accident report to be filled out online. *WHINE* *STOMP* *WHIMPER* At that point, a 10 minute survey submission felt like too much!

Why am I telling you this? Honestly, I don’t totally remember, but at the time I started writing it 10 minutes ago it seemed important.

But really, I guess I say all that to preface the following.

I am beyond humbled and gratified by your outpouring of encouragement, earnest love, prayers and support! I so wish I could hug each one of you and update you personally.

I spent the better part of Sunday and yesterday on correspondence – sharing my news, responding to texts, emails and calls and sending out updates. As time goes on and my treatment progresses I’m suspect there’ll be days when just brushing my hair will feel as overwhelming as that 10 minute survey. I’ll do my best. I welcome your correspondence, comments, texts and questions. And I will endeavor to keep you all posted through my blog and FB. Beyond that, please don’t feel slighted if I’m silent or slow to respond – because I am so very thankful for you and praise God for the gift of encouragement and prayer He provides me through you!

I’ll leave you with another song link – a friend shared it with me this week and it blessed my heart – I hope it does the same for you!

With hope (always hope),

Vanessa Loewen

P.S. For all my friends that have walked the journey of cancer, chemo, ice cream withdrawal etc. I would welcome your tips, hints, resource referrals! Thanks dear ones!

Potholes and Rerouted Plans

It’s finally time… time for me to dust off my keyboard and put digital pen to paper, and start blogging once more. There’s no better time than the present as I have things to say and news (of some importance), to share. I took a hiatus from writing regularly, because I didn’t wish to bore you with the mundane of everyday life I was out appreciatively living. This last leg of my life’s journey post-transplant has been pretty peaceful.

But once again I’m embarking on a new life adventure and I hope you’ll indulge my desire to share my journey with you!

I often joke that I would have made a tremendous Boy Scout as I live their motto, ‘Always be prepared.’ When I was still driving I practically ‘lived’ out of my car, such was the abundance of ‘necessary’ items I stashed in it. Now, I carry my contingency plan and necessary items with me wherever – 2 bag minimum. Friends compliment me when I can pare down to just one (plus a purse/wallet). But why wouldn’t I? They’ll thank me when they need a band aid, eye drops, fruit snacks or a fuzzy pair of socks! And doesn’t everyone have a pair of LulaRoe leggings and a battery back-up charger in their bag? I’m prepared, because it makes me comfortable (like wearing super snuggly leggings) and my preparedness allows me to be more self-reliant.

But there are times when you can’t plan for every contingency. For me, that time is now. I’ve had a pothole upset my smooth sailing (am I mixing metaphors?).

So, what happens when our contingency plans fall apart and my bag’s magical Mary Poppins properties dry up? Discomfort and RELIANCE. You see, it’s only when I’m able to relinquish my tight hold on my plans, contingencies and security blanket expectations that I free my hands up to grasp my Savior’s hand!

Hebrews 12:1-3  ‘…let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, ² fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. ³ Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

I’ve been battling technical difficulties for some time. My body has been on the fritz – mouth sores and ulcers throughout my digestive tract, fatigue and flare ups of debilitating abdominal pain. I’m on a first name basis with the support staff at my doctors’ offices and I may (or may not) have funded several of my providers’ Spring Breaks. I’m practically one lost dog away from a country song.

I’ve begun to wonder if I would ever find answers or if my true underlying diagnosis would be that of ‘alarmist’ and ‘hypochondriac’.

This week, God supplied me with an answer. I have PTLD – Post Transplant Lymphoproliferative Disorder (believe it or not, that the shortened name). In a nutshell, I have lymphoma.

Take a moment to catch your breath if you need to  – I know I did.

What it boils down to is this. My immune suppression and the medications I take to keep my kidney healthy are causing my cancer. My cancer, this is one thing I’m not set on keeping.

 I wasn’t naïve about the risk factors associated with a transplant – my vision was a casualty of my last transplant and treatment regimen. But, it’s never gonna happen to me, right?

I’m okay. The Lord has been tremendously good to provide me with peace, calm and a measure of ‘soul anesthesia’. I’m not thrilled with this diagnosis – far from it. But as I process this unexpected news and prepare to share it publicly I’m reminded of the beauty of hindsight.

Lamentations 3:21-23 ‘Yet this I call to mind and therefore I have hope. Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.’

21/2 years ago I stood before my church family proclaiming God’s goodness at providing me with a kidney that I statistically had no chance of getting. I blogged effusively about my delight and awe at God’s miraculous work in my life and the gift of frequent potty breaks.

At that time I shared some of the lessons God had taught me in the time of waiting and the time of receiving. Here’s a few:

·       God’s faithfulness doesn’t change, even when my circumstance do.

·       He can be trusted with my future because He sees the whole picture,

·       He’s always right on time, no matter my impatience and misgivings

·       He goes with me through the difficult times – in my weakness His power is magnified!

I’d made notations on the note cards I used when sharing my testimony – one of those scribbles caught my attention this week while I pondered the past.

‘I never could have fathomed the journey God would set before me [in answer to my prayers]… I wouldn’t have chosen the struggles I faced along the way, but I thank God for them.’

So, I guess the real question is: do I still feel the same way? Absolutely!

To borrow a stanza from one of my favorite songs (Even If by Mercy Me):

It's easy to sing when there's nothing to bring me down
But what will I say when I'm held to the flame
Like I am right now

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

If I had the opportunity to do things differently, knowing what I do today I wouldn’t change a thing. God isn’t toying with me and I’m not the punch line of one big ‘cosmic joke’. Getting a kidney nearly 3 years ago was a long-awaited answer to prayer and a miraculous gift! It wasn’t dumb luck or good fortune then, just as it’s not coincidence or bad luck that I’m facing cancer now. I don’t know why this is the path Christ has set before me, but I do know that He is as faithful today as He was the day I got my new kidney and His faithfulness will continue long after I’m gone – He’s good that way. He didn’t give me an amazing gift of renewed health and life, just to let me dangle now.

Does that mean the road ahead will be easy? I suspect not. God never promised easy or comfort – He doesn’t owe me anything. But He promises to be my comforter, my anchor my stronghold and my salvation! Promises that give me hope and surpasses earthly comfort and good health!

Deuteronomy 31:6 ‘Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.’

I’m not sure what lies ahead for me, the more questions I have answered, the more arise that no amount of Googling will answer. I’m not immune to fear – the thought of losing my kidney terrifies me. And I’m prone to worry about things beyond my control. I may not be ‘normal’ (my momma calls me special), but I’m certainly given to human responses – I’m sure I’ll be tempted to host a humdinger of  a pity party (rational thoughts need not attend) and indulge an oh-so-dramatic tantrums (like a chubby girl with a dropped ice cream cone). Hey – I’m a work in progress!

But amidst all the swirling emotions, one thought stands out as being unique from my past ‘pothole’ experiences. Based on what I know of my Savior and what He’s shown me in the past - I’m excited. I’m excited to see how God will use this for my good and His glory!

I’m embarking on a new journey – an unplanned detour. But you know the cool thing about detours? They often offer the prettiest views.

That being said, I would so appreciate your prayers! Specifically for:

o   Wisdom and clarity

o   Peace, for myself and my family

o   Treatment balance and continued kidney health

o   That I would be a bold and willing testimony and encouragement for Christ

I leave you with some verses I’ve been especially encouraged by and a link to ‘Open Hands’ by Laura Story – a song I’ve had on loop the last few days. I want it to be my response in this, and every situation. I have a ways to go before I can say without reservation “I’m not afraid of what I’ll lose, my greatest joy is finding You”, I’m about 7/200^th of the way there, but it’s my goal and desire!

With love and gratitude,

Ness

2 Corinthians 4 (excerpts)  We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. ⁹ We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. ¹⁰ Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.¹¹ Yes, we live under constant danger of death because we serve Jesus, so that the life of Jesus will be evident in our dying bodies.

⁶ That is why we never give up. Though our bodies are dying, our spirits are^[e] being renewed every day. ¹⁷ For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! ¹⁸ So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.