Three Years?

Has it been three years already? 

Has it only been three years?

I’ve been saying “three years” in my head, at least, for the past year … that’s probably because my brain was including the time of the re-diagnosis and decline in that grief/trauma math.

So many people have said that I should write a book about all this. 

First, I kinda have, right? The blog served as a way to process and inform, to raise awareness and reach out… to sort it all out somehow.

But what about a how-to? A guide on grief?

Allow me to point you to the long list of such books available on Amazon. It’s akin to the number of books on parenting toddlers or finally getting your home organized. And there’s a big reason for that: Every person is different. Every grief is different. Every story is different. Every family dynamic is different. I can provide our own, personal narrative, and I can perhaps offer some words of advice to those going through a similar experience (husband dying of brain cancer, with two kiddos roughly mine’s ages), and I can provide general “get- your -$h!t- together before it hits the fan” advice, and general “don’t say this” stuff (see upcoming posts). But other than that? I can only tell you my story. Our story. How we did/do this “grief” thing.

I’m in several groups (most of them virtual) about losing a spouse, young widowhood, parenting as a widow. Some stories ring true and familiar; others seem foreign and strange. Here are some pieces of our process:

1. Dead dad jokes
2. Cussing out the dearly departed.
3. All of the drinking. Seriously. I made up for lost time in these past few years. Also vaping. Because why not be as self-destructive as possible?
4. Absent. Foggy. Depressed. Weight gain.
5. Trying to jump back into things too quickly (work)
6. One child’s faith shaken, the other drawn to asking probing questions
7. Church attendance faltering and ceasing = guilt
8. Over-indulgence ("you owe it to yourself!")
9. Rage at little inconveniences and inefficiencies
10. Pain at seeing happy couples online and in person.
11. Resentment at having to do it all on my own. Figuring out only-parenting in the digital age.


Anyway: it's been three years. For those of us on a grief journey, it seems Year Four can mark a turning point. An awakening, a move forward, a slight lift in the crushing weight of it all. I have found this to be the case in my own life; the fog has lifted, albeit ever so slightly. I'm able to see past this minute and this day, even to next week and beyond. Some changes are coming, some things are beginning, and the dread is at bay.

Now just get me through this raising teenagers thing, okay?

How We Are

Tomorrow is the big day.

I’m spending today finishing up laundry and doing surgery prep ... which means I had to drink the nasty stuff and I’ll be staying close to the can all day. ‘Nuff said.

So how are we?

I’m over it. I’m ready for this to be done with. I’ve done my worrying, my planning, my preparing, my normaling.  I’d now like to be recovering and done-ing.

It’s the kids. Seriously.

Ezra asks every day if there’s any new information. He’s thoughtful and ruminates about how cancer is terrible and wants to know that once this is done all the cancer cells will be out of my body. He’s

trying to wrap his head around all of it by planning every minute down to the smallest detail. CONTROL. And snuggles; he’s wrapped in a blanket and hugging me every chance he gets.

Audrey is a bigger fish. She is an energetic, amazing teenager. She’s into lots of things, is a lot of fun, and is just OUT THERE in terms of her personality and fire. But inside ... guys, she’s really imploding. She’s SOOOO worried about me. I can’t explain how much she doesn’t give off that vibe, but it’s eating her alive. I’m so ready for this to be over, for HER sake.

 As for me, I’m plodding along. I dislike that I’m not sure what to expect in terms of recovery time, but I have to just breathe and believe that it will all be fine and even though I don’t know HOW it’s going to be, it will just BE, and we’ll get through it.

Also- there’s the hoping there are no complications and that this can be a one-and-done situation, vis a vis the C word.

Meals have been planned, rides are standing by, the house is mostly cleaned up and laundry taken care of ... so now ... we wait.

The stent is out! Yay!

(Really, there is no adequate way to express my relief here.)

Surgery has been scheduled: February 28. Probably very early in the morning, although it's unclear when "very" is.

Recovery time averages a day or two in the hospital, followed by a few weeks of "taking it easy," however that looks. (Thankful to not have toddlers!)

Since we're not doing the biopsy till after the surgery, I won't have pathology to report until a few days after removal. That will give a better picture of what follow-up will look like, but at minimum it will include regular monitoring of the Well-Behaved Kidney and His Surrounding Cohorts.

Adding new medical terms to my vocabulary by the day: nephrology. It's fun to say.

Oh, and here's a selfie of the bastard:

Thank you so much for your support through this. As always, my main concern is for the kiddos. So far, so good on that front; they know what's up - this will mark the end of a chapter, but the book is still open. Nothing's guaranteed in this life, and that uncertainty is difficult for anyone to accept, let alone a young person. Please keep them in your prayers.

Is It Really Any Question?

I guess it’s a big decision, and I don’t want to be flippant about it ... but I keep coming back to this:

"If a kidney lesion is a solid mass, particularly one that picks up blood and thus 'enhances' on contrast CT, it is considered malignant until proven otherwise. In the era of CT scan however, masses are found at a much smaller size than ever before. [...] 

Most patients will wonder why a biopsy is not routinely performed to differentiate between benign and malignant renal masses, and this is currently a controversial area in urology. The classic thinking has been that nearly 90% of all enhancing renal masses are malignant. If a percutaneous biopsy is performed showing malignancy, it actually has not helped the management of a mass in that, as a default, surgery was to be performed anyway. If the biopsy is indeterminate, as it often is due to lack of providing a large amount of tissue for review to the pathologist, one must still act on the assumption that cancer is present. If the tissue is read as benign, unfortunately this test has only an approximate 85% sensitivity, and thus cancer could have been missed. In all situations, a biopsy is a separate procedure with risks such as tumor spillage, bowel injury, hemorrhage and needle site seeding with cancer. Some centers feel that a biopsy can help grade cancer as high or low grade, thus making it easy to offer some patients with renal masses conservative management, but this has not become the standard. Thus, the decision to proceed with treatment is typically based on statistical likelihood and not an actual biopsy."

~https://www.dcurology.net/common-problems/kidney-masses.php

And so, unless any different evidence presents itself, I shall say goodbye to a kidney and hello to a hopefully speedy recovery wherein I can avoid hearing the C word for at least ... could I have like 5 years? That'd be awesome.

NOTE: I am currently miserable. I have a stent in place from the previous scope procedure. It is a tube running from my kidney to bladder, which causes me to feel a CONSTANT need to void, and all the pangs and twinges and aching which accompany that feeling. I keep hydrated as instructed, which presents its own problems--I'll let you deduce.

My current best friend.

The stent comes out Monday. I'm literally counting the hours. I hope, at that time, to have a better idea of surgery date. Thank you, everyone, for the cards, posts, and fantastic anonymous gifts ... you make me laugh and I appreciate it so very much.

The kids are okay. Ezra is stoic, for him, but also a bit more huggy. Audrey is attentive and a bit more considerate, which is nice :) They seem to have gotten past the extreme fear of the sky falling, and God bless them for being self-sufficient while I hobble around in angry pain.

Only 106 hours to go.

The Good News and the Annoying News

Thursday I had a ureteroscopy to determine if my kidney tumor was of the connective tissue type, or the “meat of the kidney” type.

It has been determined NOT to be the former.

Oh, so it’s the latter then!

Well, not necessarily.

There is STILL a chance that my tumor is benign, and even something I was born with which has been slowly growing my entire life.

So this [barely new] information prompts us to:

• do a biopsy of the thing, hoping it’s the benign kind, and therefore can be zapped in place to shrink, OR
• take the whole kidney out, treating it as a cancerous tumor, because if it IS cancer, poking it with the biopsy needle could spread the cancer. 

It’s quite possible that removing the whole kidney and a post-op biopsy will reveal the thing is benign and I could have carried on with both my kidneys. It’s also possible taking it out will mean “whew, we’re so glad we caught that thing when we did.”

How am I doing? My brain and urethra are on fire, since you asked. 😜 I have a stent in place that will remain for a bit. Its presence tells my brain I need to pee. All. Day. And. Night. Except I don’t, and even when I do, it’s a painful experience. So. I’m a tad miserable, but that’s temporary (I keep reminding myself).

The bigger issue, of course, is the big decision. I’ve been second-guessing, but I’m still leaning toward taking the whole thing out. Why literally poke the cancer bear? I’ve been told lots of people do just fine in life with one kidney. Dr. K. says my “good” one looks healthy.

And in other news - you guys are awesome. Truly. I woke up from my procedure to an avalanche of well-wishes and wtf-ers (I love and appreciate both). The virtual hug I get from facebook (especially when I can’t really go out and about) is heartening and priceless. Cheers to you, friends.

Seriously?

I will soon Konmari my left kidney. It has ceased to bring me joy.

In December, I had a raging case of sciatica. I reached out to a neurosurgeon because my leg and foot were going numb and tingly, and I know what that means (fun fact: I had back surgery at age 18. I looked up my surgeon and --sure enough-- he’s still in town, so I went back to him.). Dr. R sent me to physical therapy and pain management, hoping to head off surgery by encouraging my L5/S1 disc to go to its room and think about what it has done.

I’m intentionally burying the lead here.

Also visible on the MRI of my spine was a suspicious shadow. In the kidney area.

I was referred to a urologist. It took a month to be seen. In that month, I went down every possible google trail possible. I came up with everything from “harmless cyst that will go away on its own” to “metastases of cancer of the internal organs.”

Finally, on January 21, Dr. K gave me the news: Renal mass of the kidney. Approximately 4mm in size.

I’d read about this possibility. And I know about biopsies and cancer. With the kidneys, there is little utility in doing a biopsy, because

1. Poking a tumor can cause it to spread,
2. False negatives are a very real possibility,
3. Cancer confirmation would indicate removal anyway. 

In some cases, a kidney tumor can be removed, and the healthy kidney tissue allowed to remain. However, based on my tumor's size and location, this is not an option.

And so, probably as you are reading this, I am undergoing a scope procedure which will indicate to the surgeon of which of two cell types the mass consists:

• Transitional cell cancer (TCC) is a rare type of kidney cancer. It starts in cells called transitional cells. They make up the lining of the renal pelvis, ureters, bladder and urethra. [this will mean the surgeon must remove the kidney and some surrounding tissue/organs].
• Renal cell carcinoma (RCC) is a kidney cancer that originates in the lining of the the very small tubes in the kidney that transport urine. RCC is the most common type of kidney cancer in adults, responsible for approximately 90–95% of cases. [this surgery involves removing only the kidney and can be laparoscopic].

Armed with the results of that scope (I’ll let you go ahead and do the math on how the CAMERA gets to the KIDNEY), we’ll have our course of action and hopefully a surgery date.

The good news: When kidney cancer is discovered, it’s usually from pain and blood in the urine. By that point, depending on the type, it’s likely to have spread and to cause complications which are exacerbated by the patient’s age (usually around 60). I’m an outlier; my tumor was found early, I'm "young," it has caused no symptoms, and it is defined and contained.

The bad news: It’s the Big C, back in our home. My kids must deal with this nonsense all over again.

                                             ~*~*~*~*~*~*~*~

As you know, I process things by writing, and so I will be back here in the near future. A few parting thoughts for today:

• Up to this point, many of you have been kept in the dark. It is of the upmost importance to me that I protect my children from panic and dread, and until I had more information, it was pointless to get into “what-ifs” and “how are yous” with anyone outside our triad. The kids need to see that Mom is fine; this is DIFFERENT than before. Over the past few weeks we’ve processed the situation as a family, working through the shock and sorrow and fear and anger with no outside influence. We’ve been honest with one another, and I think we’re all in the best possible mental place we can be. 
• There are a lot of questions about the future: the immediate -- recovery time, possible complications, etc., and the long term -- potential for recurrence, metastases, risk of other cancers, etc.. As we receive these answers, I will pass them along. No news is just that: no news.



"Take Rachel to her MRI and then out for dessert."
I love these ladies.

• I’m clueless as to what help I/we may need. I got pretty good at shining the bat signal when my hero needed assistance, but I’m not sure how this is going to look. What I CAN tell you is that I covet and appreciate your prayers, kind words, funny messages/posts, and concern for and care of my children.