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Thursday, September 8, 2016

Even Less Sugar: A Graceful Goodbye

It’s been almost two months since Ian’s memorial service. I’ve tried several times to post about the beauty of the day and what it meant to me and my family … but I have come up short. Instead, here are some photos of the grave-side military honors, followed by a link to the service itself.

What you WON’T see is the way my kids carried themselves, culminating in each of them getting up at the reception to speak in front of hundreds of people about their dad. MY KIDS ARE AMAZING.

photo credits Greg Pelka

Thursday, July 14, 2016

Even Less Sugar: The End

As I assume you will have heard by now, Ian passed away, one week ago.

I've been avoiding this post, not because I have been unable to put words together, nor because I have been too wracked with grief to journal my thoughts ... but because his last days were both pain and beauty and private. As public as I have been, via blog and Facebook, etc, there are some things that will remain small and close and intimate.

-------------- some timeline ---------------
On Wednesday, Ian still had quite a bit of fluid and an awful, drowning cough. I started to witness "seizure activity," something he'd never experienced before. The last straw was when friends moved him up in bed, and he finally got a cough out ... but it contained blood. It was clear my ability to handle this at home (read: alone, overnight) was done, and he was transported to in-patient hospice.

The nurses deemed his breath "extremely labored." It sounded like a snore ... but in double time. And loud. In the middle of the night they woke me to say he had experienced another decline. They helped move him, and I spent the rest of the night by his side. At 6:30 I realized I hadn't heard that awful noise ... I sat up a little ... and I knew. I held tight. I sang him a song. I called the nurses in and they confirmed.

It was surreal, and horrible, and beautiful, and cold and warm and sad. I didn't sob. I breathed.

------------ [private family grief stuff] ------------

---------------------- logistics ------------------------
Ian was an organ donor. I made the decision a few months ago to pursue having his brain donated to the cancer center, in hopes that someone else would soon be spared this awful disease. (Yes, Ian was on board with donation of any kind).

We had many "final arrangement" discussions, and Ian had always requested whatever was "easiest and cheapest" ... the old "pine box or ashes dump" kind of conversation. Then he would look at me and say, "of course, you're going to do what you want anyway, so ..."  Funerals are for the living, and in our case, for the children; it is for them that I make these decisions.

So now I had thirty minutes for the actual choice; send Ian's body to Pittsburgh for the autopsy, or zoom to camp and back with the kids to say goodbye again*, negating the ability to donate but affording them the opportunity to see him. If I'm doing all this for the kids, what makes the most sense?

I chose the former; I didn't want to rush their grief. "Hi, I'm here, guess what happened, pack your stuff, let's go see him" just felt wrong.

----------------- my amazing children ------------------
I had prayed and pleaded with God ("Please, God, let the kids get through two weeks of camp - to be kids, make friends, have fun, and to not associate camp with me coming early because Dad died.") I had the "gathered at bedside at home" picture. The final words thing.

And God said, "How about this? How about I have them go to camp, meet new friends, share their situation and be prayed over and loved on, still get to be kids in light of this trauma but be separated from those very last, non-Dad moments. You will bring them home and hold them close, but they will return to that fragile but deliberately constructed nest to again be loved on and prayed over by a giant group of Christian peers and counselors. And they won't associate HOME with his passing."

Ah. Right. It's the whole "My plans/your plans" thing. Noted.

So the kids came home, albeit reluctantly, that evening. We had a private viewing just for them at the funeral home the next day, and after choosing some happy Dad pictures, back to camp they went, munching snacks and grieving in little pieces but smiling as children should.

There are many things I could post about the things they said and did, but I will not out of respect. I will say this: I allowed them to grieve as they wished -- to choose what they needed to do and say and think. I honored, as much as possible, their desires both to be given space and to be held. And I assured them that all thoughts, including, "can we just get back to camp now?" are good and okay and acceptable.

---------------- prescriptives -----------------
Do NOT tell my son he's the man of the house, and to take care of mom. HE'S NINE. HE ALREADY HAS A COMPLEX ABOUT KEEPING EVERYONE HAPPY.

Do NOT tell my children how their "dad would have wanted them to" respond/live life/think of him.

Come to think of it ... just tell them you loved their dad and know that they miss him and that things are hard and it sucks.

Because it does.

----- the obit: summing up a life in several paragraphs -----

~our last family moment~

Friday, July 1, 2016

Even Less Sugar: Creeping Up on the End

Hello, friends.

Not long ago, we officially transitioned Ian to hospice care. The nurses are lovely and available, there is minimal disruption and chaos, and we are just at home, being.

That being, however, changes slowly but significantly, by the day.

Ian no long rolls himself to sleep on his side (his preferred position). He leans a bit and is unable to correct it. He has lost most interest in food.

Yup, you read that right: Ian + Food = Not so much.

He understands everything, and his face still responds to the appropriate emotions ... albeit a much less wide smile and sharp twinkle, they're still there.

But they are fading.

His eyes don't focus as much, so he has a bit of a walleyed look. His voice is a whisper, and unless it's a common response in context ("thank you," "I love you, too," "Sure," "Nope,"), there's little chance of understanding what he's trying to say. But he doesn't try too hard anymore, either.

Last night he seemed alert but confused. As I have done MANY times before (due to his short-term memory loss), I explained the reason he lies there, unable to communicate.

"We're nearing the end, hon."

Furrowed brow: "Really?"

"Yes. The chemo drugs stopped working. The tumor is growing, and that's why you can't brain or speak and why you might be confused about things. I'm so sorry."

Tears used to fall after this conversation, but yesterday he stared, blinked heavily, and stared some more.

I told him that I had no idea what my Ian would want to be sure I knew or considered or took care of at the end, but that he didn't need to let any of those thoughts trouble him. I have people taking care of the important things, and although we are all going to be sad and angry and depressed and lonely and hurt and hollow, we're going to be okay.

"Everything that you would say to someone before you die you've said. I know you love me, and the kids, and you want what's best for us, and you're sorry to be leaving us. You don't need to say any of that - we know it. Just be at peace, tell me if you're in pain, and let us take care of you."

I've discussed funeral and burial things with the kids. They've both had their private "tell Dad everything you want him to know and would regret not having said" conversations. MY. KIDS. ARE. AMAZING.

Ezra is the sweetest, most empathetic child I have ever met. He just wants "everyone to be happy," "knows God has a plan even though it's not what we want," and "we should have a train that runs through the entire house so it can deliver stuff to us" [proceeds to detail the route, in excruciating detail, through every room in the house, while sitting with me in the dark on the porch].

Audrey had a dream that Ian passed away and "I didn't get to say stuff, so I made sure I did." She is joyful and bubbly, and clings to me just a little (not her M.O.). She is pouring on the funny and laughter (yes, I know she's overcompensating and hiding the pain) to lighten the mood and cheer me.

They are both heading to camp on Sunday. For two weeks. Two VERY uncertain weeks.

Would you please pray with me that Ian holds on until they return? I'd like them to say goodbye in his final moments. I'd love for them to not associate yearly summer camp with Mom appearing way too early, walking up to tell them the sad news, and taking them home early. And if none of that is possible, please pray I parent well and according to their needs; that I'm able to share grief and hold my babies and absorb their tears. That I can point them to Jesus, Who does not falter or fail, without "sounding like the people who are supposed to say that" (guess who?). That I continue to make wise choices for our family in light of our new reality, and that people accept those choices with grace.

This long road will soon reach a bend, but will keep meandering through forest and field.

I miss my best friend. He wanted to do this hike with me.

Wednesday, June 8, 2016

Even Less Sugar: The Post We All Knew Was Coming

How do I write this post? Is there a gentler way to say we have reached the end of things?

Ian's last appointment showed no tumor growth ... however it also confirmed what the doctor suspected; the immunotherapy drug has had no affect on the tumor, and Avastin, the anti-swelling drug, is all that is keeping it at bay.

"And tumors figure out Avastin rather quickly."

Quickly, as in months.

So there it is: we have months.

We will continue to receive MRIs/treatments every two weeks, as Ian's able to tolerate the travel and desires to do so. At some point those treatments will not be beneficial, either, but I think we do them as long as we can. 

When the tumor starts to ignore the Avastin, decline will take weeks. There will be further cognitive and mobility decrease, but not necessarily any pain (at some point one would think the pressure would cause pain, but I'm unclear on that).

Yesterday was a decent cognitive day for us ... which meant a good talk, although it meant a substantive talk, as I have to take the opportunity when it arises to talk about important things ... and so it was a tearful talk. We went over the past year, as he remembers none of it. I showed him pictures on the phone that went along with events, both in and out of hospitals. Goat, I read your fb post following the reunion dinner; he said thank you many times and wept.

Monday there was a (no kidding) murder on our street. It was quite the distraction from the reality of our situation. All the commotion and excitement gave the kids some breathing room after I sat them down and discussed our coming weeks and months. 


I am tired.

But we press on ... this is not "news," even in its finality. Ian does not fear death and awaits meeting his Savior. He's just a little sad.

What can you do?

* Check in on us. If you've "been meaning to visit," do it soon
* Shepherd the kids. Please treat them like NORMAL KIDS plus a little tenderness. You don't need to "be sure they know you know" or are available to listen - they know Mom gets the word out and most people know. Don't ask about their dad. You can ask about summer plans, school in general, books, legos ... You can say, "how are YOU doing?" and give a glance ... But then let it drop. You don't have to "watch what you say" but if you could avoid talking about cancer or funerals or that type of thing, that'd be super.
* Fill needs as they arise, when you can (rides for the kids when I can't leave are most needed over the summer, and distractions for them as well, especially when things go "bad").
* Sometimes I need to blow off steam. Sometimes I do the ostrich thing, sometimes I do the sleep all day thing. Sometimes I really need some funny. (Really, I can almost always use some funny.) I know you don't know what to say. That's okay. Say it anyway - I promise nothing will be wrong. You can't help you don't know what I'm going through, and I wouldn't want you to. Just don't be silent for want of what to say.

If you want to contribute tangibly, I think I singlehandedly keep in business .... we can always uses GCs to that and Giant Eagle. We don't get out much, so GCs to local restaurants aren't of much use right now, and people are generous with providing us meals. Special porch treat surprises are always a beautiful hug for the day, as are flowers, now that they're blooming. Cards are MAIL! which is always good.

Be kind to one another. Small kindnesses and smiles. Keep perspective, in Ian's honor, about what matters, who matters, how you can show love to your fellow man. Hug your kids, smell the flowers, breathe the cool air. Ian would not want you to be sad for him, he would want you to wrap your arms around us and keep us afloat, and to pour out God's love to one another.

Wednesday, June 1, 2016

Even Less Sugar: Running Out of Respite

Hello, friends.

For the past two weeks, Ian has been working hard at rehab. This stint has looked different than others, as he has had some decline in ability and mobility, but still he has made measurable progress in some areas. 

I don't want to focus on the deficits other than to say: he doesn't walk, he transfers. He doesn't use his right arm/hand, but he can eat just fine with his left 😃 .

The biggest issue is, and will likely always be, his inonsistent braining. Yes, he has declined in this area overall, but its very unpredictable nature has made this quite the experience in navigation. 

Example: his physical fatigue is easily correlated to time of day and activity. Late in the day, don't ask him to stand much. Ok- good, we can work with that. 

But right out of the gate, in the morning, we have a 50/50 chance that his brain will be talking to his limbs. Is he able to follow directions ("move your right foot," "now sit down")? or are we going to struggle with each direction ("Your spoon, hon. Use your SPOON."  And if that's the case, (and this is important), how will things be in an hour?? 

In other words, we're up and down, day to day, as well as within the day. I say things like "good braining day," but that's oversimplifying this web of confusion we live in. 

On Sunday he will return home. He's anxious to do so; hospitals are lonely, and I think maybe much more so for someone who is frequently confused and/or has little short-term memory. (Not knowing what time of day it is, what day it is, who was in to visit, etc). 

Back at the house, I have people helping me getting things more Rev-Ready. An outside ramp is in the works, in-home therapy will begin, and we're still working on that stair glide and shower ... 

In short ... the hard work will begin again, in the home setting. I'm going to call on those who have offered to help so we can maintain sanity and maybe squeeze some normal into our days, at least for the kids' sake. 

(Caregiving burnout is a very real thing.)

Thursday, May 19, 2016

Even Less Sugar: At the Hospital. And That's a Good Thing

So just a little update on things in Rev land:

We had an appointment scheduled for Monday (for MRI and chemotherapy treatment at the Cancer Center). Based on a few less-than-stellar braining days, I was concerned about transport to the clinic. After consulting with staff, we determined the best thing was to skip the line, as it were, and head on in to be seen. NOT for an emergent issue, but rather a two-bird-killing exercise. 

I sent out a plea to facebook: please, help me get him into my car, so I can take him directly and not rely on an ambulance (and therefore also go via the emergency room, etc) or call a van service, to be arranged via the ever-so-unhelpful-and-late-to-the-party VA. POOF: six people showed up, carried his wheelchair down the steps to the front walk, loaded him into the car and waved us on. 

Our oncologist went ahead with the chemotherapy treatment and admitted us to the hospital for the MRI. This meant observation/hospitalization which I'm not shy to admit meant some rest for Rachel. I stayed across the street at the Family House (such an awesome place) without worrying about Ian (much). Apparently he was confused overnight (of course!) but was otherwise in fine spirits when I came in this moring.

The MRI shows NO NEW GROWTH. Stable. We'll take it! It's only been two prior treatments, so that's encouraging news. Of course it's not "wow, it's gotten smaller!" news, but ... we take what we can get. 

Next Steps: Ian will remain (as one doc here put it) in Hotel Shadyside for a few days. He's had PT and OT and Speech therapy (after a fashion) and will continue to receive them while here. He will then be discharged to a facility close to home for a little in-patient rehab therapy. For how long? Who knows.

What's next? 

Who knows.

The point is: we're at the hospital, and as much as that might seem like another awful incarceration, Ian doesn't much care, I get a bit of respite from being on call 24/7, and we have a (short) path forward. 

I can't remotely forsee what the next weeks and months and years? look like, but what I DO know is that I have an amazing network of people who are itching to help. You have loved on us so much ... I am overwhelmed regularly with your generosity and love. Oh how I long to reciprocate. 

Since I've gotten messages and phone calls about ways to help, I will do my best to come up with things for those from afar and a-near. With summer coming, I anticipate needing to find someone to taxi and/or occupy the kiddos, if I'm to be at home. If Ian is home and in a state to be trusted alone with "regular folks,"* I may need a cardre of watchers so I can get myself to karate, a haircut, whatever. And the ever-present meal needs remain (why do these people have to eat EVERY day?).

Thank you for past, current and future kindnesses. I'll be in touch.

* LOTS of you have offered to "come sit with Ian" while I get out. Here is why I haven't called you: Currently my only real need for care in my absence is getting him to the bathroom, or to use a urinal. These are not things I would expect of a family friend (they include more intimacy and odor than you'd want), and on a BAD braining day would be quite dangerous (think 6'1", 230# crashing down). I can't be farther away than it takes to make it back to address a bowel movement, so me "getting out" is not a reality. Them's just the facts, y'all.

Monday, May 2, 2016

Even Less Sugar: The Bad News

I've procrastinated writing this post. I wanted the bright light of Ian's ordination ceremony and celebration to shine over us. For a little while, we could celebrate a triumph of faith, will and spirit.

And we did.

Now it's time for the other shoe to drop:

Two days before Ordination, we got the news:

The reason for Ian's deficit in cognition, memory and balance is that his tumor, which had previously been identified as a Grade 3 Ananplastic Astrocytoma, has morphed into "Grade 4 Glioblastoma-like" behavior* (as in, they believe it to now be the latter, but without biopsy, which we will not endure again, it's not an official diagnosis).

The temozolomide regimen --which he was only able to undergo after clearing the infection and subsequent leaks and shunts and surgeries -- is no longer effective.

The doctors have recommended a new regimen of avastin and an immunotherapy drug called nivolumab. They are both administered via IV, bi-weekly.

Okay, that's the cancer stuff, but how IS Rev. Maize?

Since his initial injection, he's had a few gastrointestinal side effects and his appetite and awake time have decreased significantly (a few days ago, he woke only for his morning and night pills. He refused food and slept ALL day).

When he's awake he's pleasant. He can sometimes carry on a bit of conversation, but often his word-finding or confusion makes it difficult. He's able to get to the bathroom and into his wheelchair, but is unsteady on his feet and because a fall would be fatal (he's back on the drug which inhibits wound healing, which has the potential to lead to infection, not to mention delay tumor treatment).

The other day I crawled into the hospital bed to snuggle and chat. We talked about recent goings-on, news about people we know. I talked about his ordination. I showed him photos.

He remembers none of it. None.

Not a spark, not an "oh yeah" look of recognition. He was amazed at the number of people who attended. I described the meal and the closing off of the street and named as many attendees as I could from memory. Tears ran from his eyes. He was so, so deeply sad to have no memory of the event. I asked him if he wanted to watch the video, but he shook his head. It was too much for him.

We are living in a strange reality - a mostly-sleeping man lies in a hospital bed in the living room, with life lived around him. The kids carry on about their lives, but their mom sleeps on the couch and isn't "present" for them as much as she'd like to be. We try to do fun things, get to appointments, stay connected. But it's difficult. I'm not able to leave him for more than a few minutes alone (even to a different floor) because he's confused enough he will try to get himself out of bed, even though the "gates" are up. It does no good to remind him of that, or to tell him to call for me before he tries to get up ... he doesn't remember the instruction. (I use "Nanny Cams" for this reason.)

It's a waiting game, now, again. We can only hope the current regimen has success and the tumor recedes. If it does, will any of these ill effects go with it? We have no idea.

And so, my friends - pray for us. That the tumor shrinks, that the every day is bearable, that the agencies and organizations that can offer us help are able to do so. And for our hearts. It's already been a long road and we have no way of knowing how long it will be.

* Typical median survival for anaplastic astrocytoma is 2–3 years. Secondary progression to glioblastoma multiforme is common. Radiation, younger age, female sex, treatment after 2000, and surgery were associated with improved survival in AA patients.

~~For a very good explanation of brain tumors, and Ian's type (s), treatment, and other insights, read over this brochure from the American Brain Tumor Association.