My Sister and Thomas

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.

Thomas O'Mally

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”.

Diana and I hosp

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.

Diana

One of the art exhibits in Birmingham when we were still together.

Diana and Ferg

Di giving my little dog Ferguson a ride.

Diana and I night

She and I on my last visit before six months ago.Diana' news

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.

Us kids.

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!!

 

 

Am I Losing My Best Friend?

di26

This  photo and a plaque I sent her a few years back, is what we were about.  The pic is real, when she and I were at daddy’s, “working the farm”.  The words on the plaque defined us and were a reminder, that no matter what, she was stuck with me. I think this wall display shows me she was okay with that.  It was apropos too, because in times past, it wasn’t unusual for me to embarrass the heck out of my little sister in one way or another, after all, I’m generally inclined to let it all hang out, so she never knew what to expect.  In my defense, on one occasion, I did so naively,  like when I called her a dildo in public not knowing what the word meant.  I can still see the look on her face, distancing herself from me, hiding behind a clothes rack, and trying to pretend not to know me,  hence the laugh.  She loved me anyway.

Seeing her in the state she was in,  wasn’t what I expected when I flew to Florida to visit her. Actually, I don’t know what I expected, but it didn’t take long for me to realize how badly she’d declined.  A part of me may have suspected some semblance of mom, but not really.

Aside from being greeted by a creepy critter…

di27

and the overwhelming smell of a litterbox  in dire need of cleaning when I walked in,  her apartment was nice.  She even had a corner that celebrates a part of our ancestry.

di24

These apartments are designed for businesses.  The two floors allow a tenant to live upstairs while conducting business below. She used the bottom as her massage room and office. There was everything from accountants, hair weavers, acupuncturists to well, you name it.

When I was told she had a brain tumor, I cried.  I wasn’t ready to lose my sister.  Like a parent, I’m thinking that birth order would dictate departure date and “certainly not any of my kids should go before me” or in this case not a younger sibling.

Well, she’s not going anywhere, at least not physically, but it is a tumor on the pituitary gland and it is having it’s affects. Not cancerous. She kept thinking it was Wednesday or Friday, but could never get the days right.  She repeated the same questions over and over again and it was exhausting.  She did, however, know who I was.  She thought we lived together, so when I said I’d be going home, or mentioned that my hubby, R was in California, she asked “Why, what’s he doing there?” On occasion, she seemed perfectly normal and then seconds later, she would ask an “out of the blue” question as though whatever went on previously had never occurred.

We talked about the tumor and surgery, which got postponed once again. She would promptly forget, but then hours later recall some semblance of our conversation. I talked about it further with her son who had observed the same thing.

Apparently, the kind of tumor she has, is not cancerous, so no one seems to be in a big hurry to operate, which is infuriating.  The doctors at Shand’s keep putting it off as if it is nothing. I guess in their world it isn’t an emergency but in Di’s, it is. She has no sense of time and her ability to function is getting progressively worse.  The neurosurgeon’s at this university hospital are supposedly to be the best. However, it’s the ENT,  that seem’s to be holding up the “show”.

My brother, “M” shows up a few days later and is devastated by the change in her.

Before he arrived, one of her son’s and I took her to the eye doctor, because as I mentioned earlier, what clued us there was something wrong, is that she is losing her sight and it came on suddenly.di22

The eye doctor is great.  We were there a very long time, but he was thorough.  The good thing, and this is important to the surgery, is that the tumor is not impinging upon the optic nerve, not that it isn’t affecting the loss of sight.  However, it lets the surgeons know where to go to remove it or better yet, where they don’t need to go.  The ophthalmologist believes some of her sight will return and what doesn’t, he believes, he can remedy, at least in part.  So, the good news is she won’t be completely blind.

A question her son had for me was, could Nonie (our mom) have had the same thing?! As I observe my sister’s symptoms, I begin to wonder too. This tumor causes depression, affects hormones and can display itself in many ways. The first diagnosis told us it was genetic.  Then one of the links her son sent  with information on Craniopharyngioma, does not indicate that. I’m not sure I have the right one because this link does not mention it as hereditary. The original doctor had said it was, which is why we wondered about mom.

The procedure is called an endoscopic pituitary surgery, transphenoidal …  anyway, I’ve included the technical but interesting information.  Again, this is info sent by the sons.  Since some of this information differs from what I was originally told, I guess we will wait and see.  Supposedly, she should be fine once the procedure is done.

Right now, she is tired and sleeps a great deal.  She has all the symptoms of dementia and the Alzheimer’s mother was diagnosed with, with the exception of the tiredness.  Mother was constantly mobile, but again, according to the initial information sent, each person develops unique symptoms.

My sister is craving mostly Coke  and hamburgers, but this can include any carbonated drink . . . when she’s not sleeping.  She was never a big meat eater, so this is unique to her.   She gets tired easily and gets cranky when she’s at that point.

Di did not remember any of her doctor visits, so present time events are easily forgotten, but then surprisingly surfaces later as an event that took place long ago.

One of the first things I did when I arrived was liven up the place with Halloween decorations, which she got excited about.  When we lived together, we would always dress up for the kids, like I still do, so you can imagine her disappointment when I said I wouldn’t be there, but. . . that was quickly forgotten moments later.  The upstairs windows were decorated with fall leaves only.di23

ROAD TRIP

“M”, having arrived a few days later, and I decide to take her to visit family in Alabama, especially our other sister “S”,  who does not have the resources to travel.  Both sisters liked that.  I think “S” was on the verge of auctioning off her firstborn to get the funds to come down. She was understandably concerned, so you can imagine her delight when she learned we were coming to her.  That, was an adventure in of itself.  When we arrived, the GPS screen showed us this and announces, “you are there”, and that was pretty much what we saw initially,  we laughed.  Actually, there was a two story barn to our left and further up, also on the left was a nice modular.di18

Di walked some of the property (but not all 18 acres) with us as my brother marveled at how nice it was, but after about an hour or two she asked to lie down. She slept the remainder of the visit. Fortunately, she was awake long enough for us to get a nice photo of us girls and “S”s two twin grandkids.

di17

On our way to see “S”,  we stopped off  in Atlanta to visit my daughter, the actor.  Di, surprisingly was awake for a good part of that leg of the trip, but dosed a little before we arrived.

.d30

From big city to the country.

After leaving “S” we stayed the night in our home town of Attalla and had a nice dinner. Mine was the catfish, Di had the “hamburger” and steak was “M’s.  Of course, another must have while in the south and what you don’t see with our meals is the plate of fried pickles on the right, which as you can see were gone by the time our food arrived.

 

 

Since our trip was going to be very short,  I posted to our family and church friends that we were passing through and those that got the message in time came out to meet us at a Noccolula Falls Park.  We knew Di could never handle stopping off at more than one place, so we had them come to us. I picked the Falls because I knew, that was a landmark that despite our being away so long, would not move.  More friends arrived but unfortunately we got to talking and socializing so much, I forgot to keep taking pictures. We got countless texts later from those who had not seen my post in time.  Again after about two hours, she had to retire to the truck, but all in all, she did fairly well. We stopped at a “Jack’s” for a hamburger and she then slept all the way home. di14di13

The trip had tired her and the next day she shooed us off. We had suggested heading to St. Augustine, but she said she was too tired.  “M” and I,  went ahead and went, had lunch and walked on the beach for awhile then headed back home.

 

 

 

 

We had wanted to visit the Alligator Farm but didn’t want to stay away too long.  We were gone a little over 3 hours which is her normal nap time length. When we arrived, she was still asleep, but awoke a little later, saying she was looking forward to going to the beach tomorrow. OMG!   “M” and I looked at each other and chuckled.  Instead, we told her that would be a great idea and asked her if she’d ever been to the Alligator Farm… so we went.

 

 

d32

We would have lunch with her at Sweetberries back in Gainesville and then a dinner with her son and his family on our last day.

 

 

We convinced “M” to take one of her cats, which she’d not had for long, especially since her son is making room to move her into his home with his family.  They have never had pets due to allergies and they are making the concession for Thomas.

Thomas is going nowhere but with her, since she’d found him starving 10 years agodi21

as a kitten hiding under our house. He had helped her get through helping me care for mother, so there’s a lot of history with those two.  In the meantime, Priscilla has settled nicely with “M” in San Antonio.di25

Pre-op is due on the 20th of November, so hopefully soon, we will get our sister back.

I took my flight back home on Alaska, and happened to end up in premium class, which was phenomenal. 

d31