jagstter

Hello Everyone!

My sincere thanks, for the well wishes & encouragement offered … I am very grateful! Last week was a bit of a whirlwind & I'm still awaiting more info from the results. In the meantime, here's a quick update:

New cancer @ right ear helix – biopsied & pending pathology, in a week or so. Tissue frozen (ouch!) @ forehead – tbd. Left breast tumor observed on CT, yet still requires mammogram, ultrasound & potentially, a core biopsy. MDA couldn't schedule before we left, so Dr. Joudeh (a local oncologist) will conduct the tests, Wednesday. Outcome & strategy will be pending results. MDA’s Tumor Board meets, today & will offer their recommendations re: right kidney tumor. MAYO & local urologist both recommend nephrectomy but I am hopeful for a neo-adjuvant approach before diving into radical surgery. Dr. Amaria concurred & I was pleasantly surprised! In fact, I was encouraged by a sense of advocacy I wasn't sure I'd get.

Finally, (1) .8 CM hilar pulmonary nodule was noted but no formal assessment was given of its etiology. I'm not sure if it is a hold-out from last year's pulmonary infection or something new. Even Dr. Amaria lamented the variability & vagary sometimes accompanying the radiologist's assessments. You all know the drill; standard protocol is watch & rescan for change or resolution … sigh. Unfortunately I still have no results from the Brain MRI, yet. My portal app (MyChart) only yesterday showed the results from bloodwoork, so they are a bit slow to update. Hopefully, no news is good news, LOL 😉

A belated Happy Father's Day to my fellow Dad's & keep up the good fight, Everyone!

Jennifer, thanks! I used to live in Providence & remember how fun Boston was … traffic aside, of course 😉

Thanks, Susan, Mike & Grifsy … I'm so grateful for your encouragement! Grifsy, I'm glad to hear your brother is receiving care @ MAYO & hope he is doing well.

Celeste, you BLOW my mind! I just read your blog & the on-going saga. Yet, as always, you manage to preserve your sense of humor & perspective. Throughout it all, You are AMAZING 😉

Yes, you are right … love & kindness are the salve we all desperately need to get through these trials. Knowing others face similar trials & struggle brings the comfort of community & shared experience. I do believe in the power of prayer & continue to lift up Celeste & everyone here!

Beth, thank you for your kindness. I really appreciate it!

Mark, thanks for the encouragement! I'm @ MAYO for all of the preop, this week … then, surgery on the 25th.

I hope your journey is on the road of recovery & improvement!

Hi Celeste,

Thanks, for your reply … I'm actually old enough to know that song 😉

I don't think it was neccessarily a wild goose chase to ask about melanoma metastasis. Truth be told, I have higher confidence in MDA for that assessment & hope June will provide some clarification.

Regarding an alternative for renal surgery; yes, the local Urologist has experience w/ robotic resection. At this point, I am strongly considering that option. A lot will depend on MDA … in addition to Full Body CT, they will be conducting a Brain MRI, to follow up on a sub-centimeter cyst they found last year. Hopefully, nothing & stable or better, resolved.

In the meantime, I am definitely taking your advice to rest. I lost almost a liter of blood, so the world seems strange to me, right now. And that's aside from the fact that, indeed, it is!

😉

Thanks, Tex! Like Celeste, your encouragement is truly appreciated 😉

BTW, you hit the nail on the head re: all the "stuff" that goes w/ this new reality. I tend to be a bit Charlie Brown-esque in my thinking, sometimes. Keeping one's head in the game is tiring but critical. That said, I'm grateful for Warriors like you, Tex, who spur me to take this day on & keep fighting. I hope you continue to see ground regained in your own battle! 

Hi Celeste,

I really appreciate your encouragement! You bring up a good point re: BRAF/MEK … I'll definitely discuss w/ the folks @ Mayo. I'd been wondering, too but sometimes, hearing someone you respect echo the same questions makes them ring a little more true 😉

Because Dr. Humphreys is in such high demand & had already scheduled me for prostate surgery in April, I think the concern was there wouldn't be enough time for kidney surgery by February / March to allow for a full recovery from the nephrectomy. Perhaps, they'll take everything into account from new imaging / labs, genetics, etc. & reconsider looking @ targeted therapy, instead?

I haven't yet discussed all of this w/ MDA but plan to get their input after I meet w/ Mayo in the next several days. Ideally, I would have just gone to MDA for the urological needs but Mayo offered better prostate options. I agree w/ you that having to deal w/ multiple docs / institutions can get tricky – in more ways than one!

Thanks again, Celeste!