The Part Left Unspoken in Understanding the Unthinkable

  • April 13, 2017, 9:36 p.m.
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I wrote this e-mail to family and friends who want updates on my brother’s condition:

“My [SIL] called and she’s pretty discouraged, enough that she’s finally agreed to a second opinion at Mayo in Jacksonville. I took notes this time, so will pass on what I wrote down:
When [Brother] left the hospital, the orders for oxygen were a setting of 2 if at rest and 4 if active, but now, in order to keep his numbers up at 88 to 90, he needs a 6 setting. [Brother] is weak and has pain everywhere now. They were hoping to move him from blood thinner shots to pills when he meets with the hematologist/oncologist on Monday, but he’s having trouble swallowing pills. He says they get stuck in his throat. The reason they put him on shots is because they weren’t sure if the blood clots are “being thrown” by cancer but cancer cells have not been detected in his bloodwork.

They’re going to the pulmonologist next week (hopefully Wednesday) for a PET scan to look for cancer, then they hope to see the endocrinologist on Friday. Next week, they hope to do nuclear medicine in the form of a thyroid “uptake” test, done with iodine. Oh, and the pulmonologist (giving up on the spelling, sorry) wants to wait 1 month for the needle biopsy of the thyroid, then 2 to 3 months for a lung biopsy. Gastro guy is on 5/11 for an upper endoscopy which they don’t need to stop blood thinners for.

[SIL] DID ask one of the doctors if they were working as a team and he told her no, they aren’t. He has been trying to do so, but the others don’t seem to be cooperating. I am beyond ticked off over this, but glad I insisted she ask, because she is FINALLY willing to consider a second opinion at Mayo. She admitted that [Brother] is not getting better, but rather, losing ground. She said he tries to eat but can’t swallow, he’s weaker, his pain has increased and he needs more oxygen. We agreed that she should also have the doctors revisit the ruled-out possibility of Ideophatic Pulmonary Hemo—something like “hemodisis” (not medically inclined, sorry), even though we’re hoping against that. ONE of the doctors is exploring a longshot: IGG4 Disease, which affects lung, thyroid, and stomach. Probably the Monday doctor. He sounds like the only one really on top of this and I’m not so sure on him, either.

[Stepmother], I will call you tomorrow on the ambulance issue of getting him to JAX. She isn’t sure when to take him and thought the 24th. I told her to talk to the Monday doctor, ask him to set a second opinion appt w/ Mayo and get him up there asap. If the doctor won’t do it, I’ll call [Uncle] for his pulmonolgist at Mayo.

[SIL] is nearing breaking point. Her mother was in the ER on Friday and her Dad is stable for now, but he’s not the healthiest guy in the world, either. I told her I would come up but she doesn’t answer. I’m not sure if it’s a matter of “who wants company at a time like this” or if it’s that she thinks she would impose. I’m hoping I can get up there Saturday. If not, I’m going up on Tuesday. She breaks down more and more, so I’m just trying to be as loving and supportive as I can. I told her we were all behind her 110% and lots of prayers are being said for BOTH of them. I just want to wrap them both in a blanket and rock them.

[Cousin], I’m not on Facebook until after Easter, so figured I’d keep you updated with my group e-mail. Please share with [Other Cousins]. I’ll leave it up to you as to how much to share with [Aunt]. Love you, cuz, and know you love us back.

I’ll continue to keep you all updated. If it’s too much to read, let me know and I’ll just send to those who want the info.

Love you all. This feels surreal.”

And here is what I DIDN’T say: I am losing my last sibling. My lifelong buddy. It was always my youngest brother and older brother pairing off, and us two middle siblings on the other side. It wasn’t an acrimonious thing (except my eldest brother always hated my guts…he never got over the fact that I was born, and, even worse, born a GIRL), it was a natural division. Eldest brother was always too good to hang with us (I didn’t mind) and youngest brother would drift in and out.

In the 50s, we shared secret jokes. When he goes, no one else will remember that magical summer day we spent eating apples as fast as we could and then running around the yard, pelting each other with the cores, yelling “Apple core, who’s my friend?” and dissolving into laughter. No one will remember the day we found a nest of what we thought were baby rabbits but turned out to be mice under a rock in the sand dunes. Or that I threw Tiger out the window into a snowbank and left him there all winter because I got mad at him. I confessed it to him years later and we had a good laugh. No one else knows that he called his stuffed animal HUNKELBERRY Hound instead of Huckleberry Hound or that his favorite book was Doctor Dan because it had cool bandages in the back of the book. Even back then, he was a ladies’ man and admired Nurse Nancy, so he read my books, too.

In the 60s, my middle brother and I had the same friends, just as we had in our younger years. No one else will remember that I took the rap when Dad saw the smoldering cigarette and assumed it was mine. We shared creativity, yet it was different. We bonded over music and split over architectural style. We dealt with our parents’ alcoholism together. Our youngest brother drew closer to us in those years.

We buried our Dad in the 70s, cruising in his Lincoln, Mach(-whatever-number-that-year’s-model-was) up to the beach cottage, singing “Bye, bye Miss American Pie” the whole way. When we got there, we walked the beach as we’d done over the years and later that night, built a fire in the fireplace and sat there, drinking beer and talking about Dad. A year later, we were partying together yet again, this time at my wedding.

He became my sons’ uncle in the 80s. I was proud of his praise for our parenting skills. His opinion of me mattered, as mine did with him.

In the 90s, we buried my youngest brother together and our mother in the early 2000s. He was as devastated as we were to lose our Nick two years ago (Nick was his favorite). Our eldest brother passed just a few weeks ago and now it is only us. Not really, because there are aunts and uncles and cousins and, most importantly, our children, but of the original family, it is just me and the brother I’ve always been closest to. And now he and our shared memories are slipping away from me.

Too many losses. I deserve a win.

QueenSuzu April 13, 2017

Yes, you do deserve a win, but I can only give you a virtual hugs ((hug)). Hoping and praying that your brother can get to JAX and the docs there can help him. Also prayers and hugs to your SIL as seems she is now dealing with additional illnesses with her parents.

ConnieK QueenSuzu ⋅ April 13, 2017

I'll take those hugs and prayers and pass them on to SIL, too. Thanks, Pal.

Shattered April 13, 2017

((((((((((((Huge hugs))))))))))))

I wish there was something I could say to make it all better.

ConnieK Shattered ⋅ April 14, 2017

I think we all feel that way. It's such a helpless feeling.

GypsyWynd April 13, 2017

Hugs and prayers for you and your brother and SIL.
If you need anything.......a place to crash, a meal, a shoulder.......we're here.

ConnieK GypsyWynd ⋅ April 14, 2017

Yep. I know. Love you.

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