Matters of the Heart

I don't know if I made the right call. Don't know if what I did was the kind, responsible thing to do or the sentimental, ultimately pointless thing. Won't know for a while. Have a feeling the guilt and worry is going to bother me for longer.

Here's the thing: I love my animals. I'm generally a dog person, but I honestly love the vast majority of animals. Can't claim a strong affinity for rats, but I'm not out to get them either. Having said that, I am also a realist. I don't "baby" my pets in the stroller, outfits, and real bed sort of ways. I take the best care I can of them, but I also treat them like the animals they are. Reliable, caring, professional boarding? Absolutely. Doggie ice cream before bed and an armchair to sleep on? Um, no.

Bubba is sick. Really sick. It happened last night after supper -- fast. He was suddenly restless, drooling, breathing heavily, trying unsuccessfully to vomit. I felt his stomach and it seemed full of air. In the two minutes it took me to find the number for the emergency vet his abdomen had swelled a third more and was hard. By the time we got him to the vet he was already in shock. It was a classic case of bloat, the dreaded sudden condition which can cause death very quickly if not treated in time. X-ray, IV, tube down the throat... Boo and I served as the lab techs.

Bubba and his ducky

Today Bubba was transferred to the area critical care and surgical unit. Further tests showed a stomach which was twisted and folded over on itself. The only options were immediate surgery or euthanasia. Given the potential costs of surgery and after care, given the fact that Bubba is a mutt who is in the beginning stages of hip dysplasia and joint fractures, I wrestled with the decision. He's 7(ish; he was a rescue, so we don't know for sure). He may or may not be overcome with terrible pain from the other bone issues and need to be euthanised within a year or so anyway. He may have 5-6 years of good life ahead of him. And the money... The money is of course an issue. The vets were very sympathetic and supportive, but I had approximately 10 minutes to make the decision. I messaged furiously with Jasper. I prayed.

We opted for the surgery.

Because although the practical thing was euthanasia, my heart couldn't take it. This dog helped save me when I was at my worst post-op. This dog has helped walk off frustration, loved me when I wanted to be left alone, irritated me beyond measure occasionally, and always demanded that I care for him. Which has meant I couldn't sit around and be miserable all the time. Because when you take on the care of an animal, you have a responsibility to that animal. So even when the house was empty and all I wanted to do was sit and sob, I had to take Bubba for a walk. And that might not have physically saved my life (although the exercise surely didn't hurt!), it did help save my bigger, non-physical life. I owe him.

Which might all be sentimental drivel; I don't know right now. Oh, God. Forgive me if I've done the irresponsible thing!

Bubba is out of surgery but still in intensive care. We won't know if he's going to make it for a few more hours. I'm just hoping and praying for peace and the best thing for Bubba, whatever that is.

Healing, Part Two (In 55 Easy Steps)

On October 31st I had a fistula repair performed. In the bad news category, it was my third attempted fistula repair. In the good news category, it turned out to be a new fistula, which means the two repairs on my original fistula worked. In the bad news category, this means I have a new fistula. In the further bad news category, the fistula drainage didn't stop enough to allow proper healing to the repair site, so on November 22nd I had another temporary stoma (my fourth) installed. In the good news category, the surgery went very well and there were no adhesions involved, so the surgeon is extremely hopeful about the outcome.

Refer to #31 and see how many you can identify.

Life is full of poop. Sometimes it's more, sometimes it's less, but the fact is that all of us have to deal with a certain level of both metaphorical and literal poop. And the sooner we learn to do that without whining or running away or collapsing, the better off we are.

I apologize in advance for any unpleasant imagery this post puts in your head. On the other hand, hey, you're here under your own volition! Gross or not, this is my reality. And if your sense of humour is slightly twisted, it is kind of funny...  Afterwards. So, for those of you silly bored reckless brave enough to continue, I offer you:

How to Change a Stoma Appliance in 55 Easy Steps

1. Wake up repeatedly during the night and check the base of the stoma bag to make sure it is still securely fastened to your skin.
2. Finally fall asleep soundly around 4:30.
3. Awake with a start at 7:05 to find that yes, you have sprung a leak.
4. Cuss.
5. Get out of bed. As you are still only 10 days post-op and cannot sit up normally, this involves rolling onto your right side, causing more leakage, and pushing yourself up to a sitting position.
6. Bite your lip and sigh. Pledge that you will not cuss your way through this entire procedure.
7. Stand up. Check bedding and execute small happy dance at the knowledge that you caught the leak before it soaked through all the bedding & the waterproof pad you now sleep on, which means you do not have to strip the bed at this immediate moment.
8. Realize that your little happy dance caused the stoma to become active. ("Become active" is a euphemism for "spew poop".)
9. Cuss as you grab a pile of compresses to cover the leak. Grab robe.
10. Run (well, okay, shuffle-jog) to the bathroom.
11. Empty the clean laundry out of the washing machine. Take off your pajamas, one-handed (remember the other is holding bandages to the leak), and throw them straight into the washing machine.
12. Sit on toilet. Empty stoma bag into toilet. Ask yourself again why you ate so many green onions at supper the day before??!? Gingerly peel the wax base of the stoma appliance off your skin and stitches/steri-strips.
13. Cover stoma with toilet paper to prevent further leakage incidents. Throw everything in the garbage can. Make mental note that garbage must be emptied ASAP.
14. Hop in shower.
15. Begin washing.
16. Begin relaxing in the warm water.
17. Watch in amazement as your stoma becomes active (see #8 above) and does a very admirable imitation of a sprinkler head. Specifically, the impact rotor type.
18. Cuss.
19. Wash shower walls and tub.
20. Finish showering.
21. Dry off.
22. Grab toilet paper to cover stoma 2 seconds too late.
23. Grumble and moan, remembering previous pledge not to cuss through the entire exercise.
24. Clean up. Place bathmat in washing machine.
25. Throw on robe.
26. Debate where to put on new appliance. In bathroom? Feel too weak to stand for another possible 20 minutes and rule out lying on cold floor. In your bedroom? Not ideal, as DH is still sleeping and you'd rather not wake him up for a variety of reasons, including embarrassment/frustration about the leak.
27. Peek out bathroom door, spy that Little Toot is up and her bed is free. Score!
28. Shuffle to bedroom, holding TP on stoma and robe (more or less) secure with one hand. Gather up as many supplies as can in the other. Shuffle to Little Toot's bedroom and dump supplies.
29. Repeat.
30. Repeat.
31. Lay out supplies on bed: two towels covering bed, compresses, adhesive-remover wipes, stoma appliance base, appliance paste, stoma powder, medical scissors, half-moon plasters, stoma appliance bag, small medical waste bag, and hairdryer all within reach.
32. Feel around blindly under Little Toot's bed for the extension cord you know is there. Wonder what else is under there. Make mental note to have Little Toot clean out from under her bed ASAP.
33. Find power strip, plug in hairdryer.
34. Lie down.
35. Using medical scissors, cut a 30-mm hole in the wax stoma appliance base and place base under your bum to warm up and become more pliable. Wonder who first used this technique.
36. Wipe stoma area down using adhesive-remover wipes. Wonder why they are made so thin. Discard used wipes.
37. Slowly dry stitches/steri-strips and stoma area with hairdryer on low setting. Wonder how many of your friends and acquaintances are going to blow-dry their abdomens today.
38. Grab compresses to mop up small squirt. Re-blow-dry area. Proactively place pile of compresses on top of stoma.
39. Congratulate self for not cussing over squirt incident. Make mental note to add squirted-upon robe to the load in the washing machine.
40. Grope around and find stoma powder; sprinkle a liberal layer around base of stoma; wipe off excess. Discard used compresses.
41. Pray fervently for no more activity from the $%#@! stoma.
42. Retrieve appliance base. Apply stoma paste around edge of hold in the middle.
43. Begin to peel off the base backing so base can be placed on skin; realize that you have applied the paste to the wrong side of the hole.
44. Cuss.
45. Clean off base as best you can. Apply paste to the proper side. Discard used compresses. Apply base to skin, fitting base hole snuggly around stoma. Wonder who spends their time designing stoma appliances.
46. Find stoma appliance bag; snap securely to base and press ring to make sure the seal is tight.
47. Place hand over stoma/bag/base to continue keeping the area warm and ensure flexible and strong adhesion.
48. Check clock. Note time is 8:18. Relax back on pillows, glad to have the process mostly done. Still time to eat and brush teeth before the home care nurse arrives at 9:00.
49. Decide that maybe the 10 minutes of lying quietly and heating the stoma appliance with your hand could be used for some prayer and reflection.
50. Hear the doorbell ring and Bubba bark at 8:20. Listen frantically as Boo answers the door; stink, the nurse is here 40 minutes early!
51. Cuss. But only a little.
52. Spend 10 minutes with the nurse, who inspects the change job closely. Try not to breathe in her face (see #48).
53. Express gratitude as the nurse helps apply the half-moon plaster, which you had forgotten about. Wonder how many people had to deal with improper base placement over stitches before they were invented.
54. Bid adieu to the nurse, get up, get dressed, clean up supplies. Empty garbage in bathroom. Toss robe in laundry and start load. Cook & eat breakfast. Deliberate upon an appropriate penance for the all the cussing. Con Resident Domestic Goddess (aka Mom) into changing and laundering sheets after DH gets up.
55. Begin obsessively checking for leaks every hour on the hour....

The hard work of healing is not for the faint of heart. Or for those lacking a Junior High level sense of humour.

"becoming active"

Your turn: what physical or metaphorical steps do you need to take to slog through the poop in your life at the moment?

Tiny Feisty

This is Baby.

To be more precise, this is Baby holding her Daddy's finger. Baby was born in October with a heart condition which required open heart surgery within the first 5 hours of her life. Since then she has been through a myriad of smaller treatments, a collapsed lung, and too many ups and downs to be counted. Very recently a clip installed in her heart during the initial surgery broke, requiring an emergency surgery. Baby's parents were told she wouldn't survive. With much prayer and hope they sent her off to the surgery, whispering to her, "Prove them wrong."

She did. She proved them amazingly, beautifully, phenomenally, feistily wrong.

The latest update is that she is doing better than anyone expected; she may be able to go home at the turn of the year or soon after.

Baby's father is a baseball fan; in a moment of sleep-deprived silliness at the hospital, Baby's Momma grabbed his ball cap, punched it inside out, and slapped it on his head as a Rally Cap. A picture on Facebook was all it took to start a landslide of "Rally Cap for Baby" photos being sent in, with assurances of prayer and support from all over the globe.

All Saints Maastricht Uni Group (& Bubba) Rally for Baby

Baby's Daddy has been printing the pictures out, hanging them by her bassinet in the NICU. The nurses are blown away by the amount of support Baby is receiving; the surgeon and the anaesthesiologist are dumbfounded at Baby's strength through all of this. Baby's Momma and Daddy keep praying, keep hoping, keep loving. What can I say? They believe in prayer; they believe in hope; they believe in love.

I know Baby's Grandma; she's a pretty feisty lady. I know Baby's Daddy (he once interned for me while I was preggers -- every 20-year-old guy's dream job!) and he's a pretty feisty guy. I "know" Baby's sister and Momma through Facebook; they look to me to be the very picture of feisty gorgeousness. And Baby is proving herself every day to be more feisty than the rest of us put together.

So Baby, as dubious an honour as it may be, I pronounce you a Tiny Feisty Broad. Your Momma says you were a kicker in the womb. Keep kicking, Baby; keep kicking!

"Nothing is impossible. The word itself says, 'I'm possible.'"

(A favourite quote of Baby's family, from Audrey Hepburn.)

Your turn: if you would like to support Baby in prayer, send me a picture
of you & your Rally Cap.

I promise I'll get it to Baby's family.

Healing, Part One

A few years ago when we lived in Canada, after my whirlwind Ulcerative Colitis diagnosis and first surgery to remove my diseased colon, while I had a temporary stoma, an old acquaintance phoned me.  (I'll call him) John began the phone conversation tentatively, as we hadn't ever known each other all that well and he was very aware that I might think it odd for him to phone me up out of the blue.  "I heard about your diagnosis and surgery," he said.  "I've been diagnosed with colon cancer and am going through similar things as you, I think.  I was hoping we could talk...  I, um, do you ever have problems with controlling your bowels?"  "Oh, messing your pants in public?  Yeah, been there, done that," I responded, and the conversation took off.

Picking up the pieces

What meds are you on?  Do you have a moon face from the steroids?  What treatment options have you been given?  What can you eat?  Aren't NG tubes absolute hell?  The conversation culminated in him telling me about a recent event involving his van, a potty chair, and a drawn sidearm.

John had been very active as a Boy Scout leader, and had a large panel van with which he used to haul the camping equipment for his troop around.  After his diagnosis and partial colectomy, he placed a potty chair in the van and accustomed himself to only making short forays away from home whenever he could possibly help it.  "I know where every public toilet in a 10-mile-radius is," he told me proudly.  The potty chair was for when he absolutely couldn't make it to a public washroom, which did occasionally happen, as any IBD or colo-rectal cancer patient can relate to.  On this occasion, against his better judgement, John agreed to run an errand for a friend which required driving on the beltway around Washington D.C.  At rush hour.  With an even larger-than-normal backup due to an accident.

After close to an hour of fighting the urge, John realized he couldn't hold it anymore and wasn't going to be able to make it to the next exit.  He pulled his van off on the side of the road as far as he could, turned on his hazards, and made it to the potty chair just in the nick of time.  Unfortunately, this round of chemo-induced emergency poop lasted for a while, which is how John found himself surrounded by State Troopers demanding he open the back door of the van and come out slowly, with his hands up.  The officers had pulled over to investigate, knocked on the back door, and were surprised to hear John call out, "I'm in here, I'm going to the bathroom, I'll be out in a minute!"  They assumed this was some sort of clever ruse for illegal activity and ordered John to exit the van immediately, which, of course, he couldn't.

After a few back-and-forth verbal rounds John was fed up and yelled, "Listen!  The door is unlocked!  I promise I have cancer and am just taking a ****!  Come in if you want, but don't say I didn't warn you!!"  The back door slowly opened to reveal a shocked Trooper, gun drawn, taking in the sight of John on his potty chair.

And, of course, the officer was a woman.

John and I howled with laughter for several minutes; I had to bend over and hold my stomach while I gasped for breath.  "Thanks," he choked out finally.  "No one else will laugh with me about that."

Of course they wouldn't.  It was too painful of a story for those close to him to hear, too evident of the depths his life was currently occupying.  Too nasty for others, too much detail for some, too foreign for many, not appropriate to share in most social contexts.  But for someone else dealing with the same poop issues, for someone else who understood the pain, the shame, and the embarrassment -- for me who had already at that point developed a very interesting sense of humour as a method of coping -- well, it was HILARIOUS.  We both got off the phone feeling considerably better that day.

Not all the conversations with John were so uplifting, and he died a few months later.  Still in the throes of treatment and having just narrowly escaped death myself, it was a sobering event.

Another friend lost her husband this past week to cancer and Crohn's Disease.  (It was the cancer that killed him, but the Crohn's didn't help the treatment or prognosis.)  When I first saw her notice on Facebook about his downward turn in health I was surprised.  I hadn't been on FB in a few days and, as he had been fighting the cancer for 5 years, I guess I had grown accustomed to the reports of ups and downs and had forgotten that death could be imminent.  I never met Phil in person, but I came to know him a bit through letters and notes from Elizabeth, his wife/my friend and through his posts on the Caring Bridge site.  (www.caringbridge.org)  I also felt a sort of weird connection with him due to his struggles as a fellow IBD patient.

As I scanned the last few posts I found one where Phil mentions "taking constructive criticism" about the tone of his CB journal and attempting to be less cranky.  "WHAT??!?"  I thought.  If anybody has a right to be cranky, THIS guy does!  My inner cynic immediately began pontificating about how people just love to hear from noble sick people who are cheerful despite it all and do their best to remain upbeat.  We don't want to hear about the nasty, gross, depressing, chilling, CRANKY times.  Heck, we don't want to live them, either!  But we all do, at some time or another.  We all do.

"Be kind, for everyone is fighting a hard battle."  (Plato)

Lately on Facebook there have been a lot of "repost this status" notices about people with "invisible disease" or difficulties.  I don't repost them.  It's not that I disagree with the notices, necessarily, it's not that I disagree with the sentiment, it's just that I'm here.  I am visible.  People are visible.  And all of us, ALL of us, need a listening ear, a laugh, some support at one time or another.  Whether it's because of cancer or IBD or because we're just having a really bad day or we have a differently-abled child at home or because we're so depressed that we're barely able to pick up all the pieces (let alone put the puzzle together!), all of us need to be handled gently, to be respected, to share a laugh, to have someone listen to the nasty, gross, unpleasant parts.  We need someone to laugh at the potty-chair-in-the-van stories with us and we need someone to cry with us when it hurts.  And, honestly, you never know when it might be the last time you can offer that to someone.

Of course people need to be told to get it together sometimes.  Of course people wallow and need to take responsibility.  Of course people try hard and fail.  Of course sometimes it's all just too much and we can't hear any more.  And of course none of us can help everybody.  But we can all be a little quicker to listen, to at least sympathize if we can't empathize, to give the benefit of the doubt.  We can realize that maybe that criticism to Phil really was constructive; maybe Phil needed to hear it and the person saying it knew and loved him well.  We can realize that maybe we don't know the whole story behind everyone's actions; we can be quicker to encourage and laugh with rather than criticize and mock.

We can give thanks for our blessings and sit with those who don't feel like they have any, even if we don't say one word.

Because all of us need healing of one sort or another.

--For John and Phil, who don't need healing any longer as they rest in their Saviour's arms.