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?! ;)
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
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!
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