As I mentioned some time ago, my sister was diagnosed with a brain tumor. It was an unusual tumor that made itself known last year.
She finally had surgery three weeks ago. When I first posted that information, we were all told it was a genetic, slow moving brain tumor, situated on her pituitary, causing her partial blindness and memory loss. I was justifiably upset that the “team” of doctors kept delaying the surgery. I could see she was getting worse. And, they were wrong. It grew way faster than they ever imagined it would.
When my step-brother and I visited in October, she was already quite forgetful, but she was managing. She could feed herself and care for her basic needs. To talk to her, she didn’t seem quite that bad. We both left Florida relying on her boys to keep checking in on her and making sure she was okay, which they did, faithfully, as did some of her neighbors, so she wasn’t entirely alone.
She and I kept in touch by phone and some of the time, when she could find her phone we would get to chat. Then, all of a sudden, I wasn’t getting through to her, at all. I then had to rely on communications from her sons. Her sons started having to go by more frequently and then alternating days when they could. The niece in law would clean, do laundry and prep several meals for her, but one day they found the plate from the night before untouched. In fact, some had been wrapped up in paper towels and squirreled away. She hadn’t been eating!
Her eldest son took his wife with him to pick her up and take her home with them as they had wanted to do before. Up until then, my sis had not been compliant to go with them since she’d made it clear that she expected them to take all her furniture and “stuff” from her two floor flat and move it into the one bedroom. They explained, they could store these items, for when she was better, but she dug in her heels and did what we call, the “Brothers” thing. That’s our maiden name and our genetics are given to being notoriously obstinate.
Then there was Thomas. The fact that there was a Thomas didn’t help and the kids knew how much he meant to her so they didn’t force her.
Thomas was her cat. They are all allergic, so until they found him a home, taking him wasn’t going to happen. No way, no how, that wasn’t going to happen if she had anything to say about it – period. So, they were at a standoff.
He is pretty though. As it turns out, she wasn’t paying much attention to him and Thomas was becoming quite feral in his own home.
The next day when they came to pick her up, she was lying on the floor in her own urine. My niece in law showered her and my nephew packed up a few things to take her home. They figured they could leave Thomas behind and check up on him daily to feed and change his litter box.
As they were headed downstairs, she collapsed. She was taken to the ER and then admitted to ICU. The surgery was scheduled but they had to strengthen her and get her vitals up so she could have surgery. She was there a week before that would happen. Her neighbor friend left me a message saying she had asked for me, so I flew out there two days later and a few days before surgery. The evening I came in, she didn’t know who I was, but then the next day when the doc asked her if she knew me, she said, “Yes, that’s my sister Jo”.
After a few days, she actually brightened up, as you can see.
During the few days before the surgery, I’d go and visit. She really couldn’t carry on a conversation, but I noticed she wasn’t eating yet either, so I started to break down her food and feed her.
I really didn’t know what to do other than sit, so I started to read to her, give her a massage, wash her hair and do whatever I could to make her feel connected. Her skin was very flaky and dry, so I made an olive and coconut oil concoction, simply because I reasoned, it could possibly give her nutrients to absorb from the outside. I figured, if she’d been half starved then she wasn’t getting the fats her body needed. My niece in law had been using regular lotions, but they weren’t working. I figured, if Sophia Loren swears by that stuff for her skin and she looks amazing, then it must work and it did. In any case, it gave me something to do with her. I wouldn’t stay long because she tired easily and after awhile I would summarily be dismissed. Little sisters can be quite bossy.
At home I would take care of things. Clean up a bit, take care of Thomas and sight see. In the meantime, the kids all asked if I’d seen Thomas and I say, “Not yet” or “Surprisingly, No”. Thomas had lived with my husband and I up until 5 years ago, so it was kind of odd, he didn’t remember me. It was almost four days later that I saw him run by. If it hadn’t been for food disappearing and the litter box needing cleaning each day, you’d never know he was there even though I looked and called for him.
Later, one of the niece in laws make an effort, to talk me into taking him and I said, “No, I’m not flying a cat all the way to California”, besides if I got another cat I’d want one that cuddles and Thomas doesn’t cuddle, besides Chloe’s health is failing and if he doesn’t remember me then those two won’t remember each other.
Surgery day came and her boys went in to see her first, then one came out and I went in and the delight on her face to see me made my trip all worthwhile. Keep in mind, she wouldn’t remember day to day things we might have done. Her son admitted he thought I might have wasted my time coming, but when he saw her face light up, he was so glad I had.
My other brother from California and my sister from Alabama came as well. After surgery it looked like everything would be fine. Her eyes and expression were alert and welcoming, so we were relieved. By the next day, she was angry and stated quite clearly how she couldn’t breathe and was in pain and asked me to leave and to tell everyone else to stay away. It was still promising in two ways, one she was able to articulate and express herself clearly, something we’d not seen and two, she was thinking clearly. Since the surgery had been performed through her nasal passage, we weren’t terribly surprised she’d be upset about her breathing and she’s not a mouth breather.
The day after that, my brother went in to see her and we thought the pain would be better, but… they were going to have to go back in. She was having major clotting and some had blocked breathing. We thought it had dropped into her lungs, as she was put on a respirator. It turns out it was lodged in her throat and for two days they would remove clots the size of chicken livers. I remained outside. I didn’t see her for three days even though we would all meet daily in the waiting area. All hope had been dashed that I would get my sister back.
That week, she was not eating and they wouldn’t put a feeding tube in her because it could introduce bacteria into her system. So they said. I’d never heard of anything like this. I am as frustrated as hell at some of the decisions these docs have made, but then who am I? I try to be patient, but I don’t understand. My nephews too have been frustrated. My daughter, an RN, in SLC and my niece in law, a vet pathologist instructor, both do their best to explain things to us. Even though “S” isn’t a human pathologist, she does understand medical speak.
A few days later, she was a bit more responsive. I told her I loved her and she said, “I love you too” I explain to her that I will have to return home and for her to get better and she says ok. I leave.
Unfortunately, she doesn’t. Days have passed and she’s gotten thinner. They got her to walk one day, but she’s been off and on nourished through a nasal tube. Finally they thought to move her into a regular wing, thinking she may have developed a type of hospital depression, so they did for like two day, if that. They wanted to move her to rehab, so to do so, she had to be eating or on a feeding tube, so they put a direct line to her stomach. I’m fuming because why in the hell, didn’t they do that in the first place?
They were giving her hormones to compensate for the pituitary but said, they hadn’t quite got the right combination yet. I kept saying, feed her for Petes’ sake. How can she respond to anything if she isn’t nourished?!!!
They were still wanting to move her, but my nephew disapproval was apparent. The nurse said to him, “You don’t think she should be moved?” He looked her in the eye and said, “Do you think she looks like she’s in any shape to be moved!” I think he’d had enough as well. So, she told him she’d have the doctor call. Well, they didn’t, but they immediately ordered a bunch of new tests. Checking for the possibility of meningitis and/or a stroke. One of the docs (they work in “teams”) finally called to say the nasal passage was clear so she didn’t get meningitis from that. Tests came back but so far no bacteria was found and nothing fungal yet, which could still show, but probably not. The MRI did show vascular inflammation that could have stemmed from an infection or immune response. They are giving her antibiotics and it’s still unclear what has happened since surgery, but she still has a vacant look. On Monday she will get another MRI and a full stroke study. Again, why do they take so long to do thing?
With the COVID-19 a concern, they are limiting visitations. My siblings and I wanted to go back there again, but until things clear up, we just wait and pray.
I wanted to share some pics of us her and us.
One of the art exhibits in Birmingham when we were still together.
Di giving my little dog Ferguson a ride.
She and I on my last visit before six months ago.
Looking real good, a couple of years ago. She actually won a ribbon for one of her drawings that trip.
Then there’s the original four. I’m the tall one, she’s the little one. We would later acquire my four step siblings and a new little brother.
I want to thank my baby brother, who couldn’t be there, for paying for my trip to see her and for all the support my step siblings have given me as well. The rest of us got to be there for her for one week. Now we wait and see.
As for Thomas, the word got out and there were several offers to take him. He ended up going home with one of the ER nurses, and yes, he’d become quite feral. So much so that when “S” and I tried to round him up, he hissed at us. This gal and her husband would come two weeks later and corralled him to get a look at him first. After a bit, they said yes. The other day, we learned he was sitting on her lap while she watched T.V. He is obviously happy, because he doesn’t do that for just anyone.
Yesterday, I got to thinking of all that has transpired in the world since she lost touch and so many monumental things no less, and a happy thought flittered by…
Wouldn’t it be great if down the road, when she gets better, we can tell her of all the stuff she “slept through? My son, says, “Yeah, “While You Were Sleeping...”
It made me chuckle to myself and then I laughed a little out loud. I told my nephew, I just bet she’d get a kick out of it. He said and then she’ll have that curious look on her face…and added a laughing emoji.
I, WE can hardly wait!!