Be Unafraid - Traversing life and notes to myself

 July 25, 2022

Broken lawn mowers, cars that won't start, figuring out 2-cycle engines and their fuel type, roof stuff, bills from your now deceased husband's hospital stay, etc. Ordinarily, these types of things would be handled by "us". Now it's all Me. 

When moments have you down and you feel broken, cry. Do it. 

Notes and advice to myself - Mel baring it all.

I have had weird "cry moments", weird what in the world am I doing? Weird, what am I going to do? What SHOULD I do moments. Stepping out of the shower while a song is playing that just touches me. Boom, waterworks. Driving down the road and seeing random stuff, crying out of the blue. Eating dinner while watching a silly video, reaching for my phone to share a funny with him and pause. Oh, can't do that, he's not here anymore. Fuck. 

Just, <sigh>. 

Time, don't wipe your memory off my lips...Desmond Child - Obsession. 

I don't want to lose memories or thoughts or feelings from "before". I'm learning it's okay to fall apart, so long as I pick myself back up again and dust off, however cliche' that that may be. I'm learning it's okay to cry, it doesn't mean I'm weak. It means I feel, I'm human, I'm a mess...

This whole thing is a map I've never seen before except from afar. It has switchbacks I've never wanted to try but now am being forced to drive UP and through, pretty much with blinders on. One inch at a time, one curve at a time. Straining to peer around the bend as it were to see what's ahead. Most of the time, I can't see around the curves or the bends or over the hills. I try to look back and remember and yearn for those easier times, those easier roads. 

Sit back, girl. Fasten your seatbelt. Breathe.

Breathe again - in and out. Feel the emotions, see them for what they are. Loosen your grip on that steering wheel. Let that sweat dry. Keep driving, keep walking, it's okay if you fall and have a moment. This whole grief thing is different for everyone. Just.Keep.Doing.It. 

We don't take American Express...

The day of Brandon's death...

I was sitting in the car "after". I'd talked to my sister-in-law and one of my own sisters for a little bit. Had some music playing, air conditioner running, trying to gather myself to make the drive home. It had to have been around 11:30 or so. I really don't remember the exact time. Everything was a bit of a blur at that point.

My phone rang. I didn't recognize the number but answered it. 

"Hi this is Eric from blah blah blah..." He went on to say that he was calling from the hospital and wanted to know if Brandon should be taken to a funeral home and if so, which one or was he to be taken directly to the University for the anatomical body donation. 

I was still in a bit of a daze but responded no, no funeral home, please take him straight to the University. 

Eric went on to say that he had a number he was going to give me. I needed to call the service that would be transporting his body and needed to pay them. 

Me to myself. WTAF. Thinking...Can't you bill me? 

Me to Eric, uhm, sure. Let me find a pen and a piece of paper or something to write on.

I dug around in my bag while tearing up again because seriously? WTF My husband JUST died. 

I called the number and talked to Terry.

Terry was very ebullient over the phone; I lost my mom and sister and we carried them through this service, too. We're all family here and your husband is now a part of our family. 

Me - uhh. That's kind of creepy.

She went on to say they'd take care of him, etc., etc. Then got down to business.

Our services cost two hundred and fifty dollars for transport and we don't take American Express. 

Me. Uhm...okay. Visa okay? 

She was chatty for a bit assuring me, reassuring me while she got my info after which I hung up and just sat there for a bit.  

Talk about a very bizarre transaction. 

The day I lost my best friend

 June 6th at 8:19 AM per the death certificate.

By the time I looked at my watch, it was 8:20 AM and 18 seconds.

No one was in the room except me, Kevin our friend and of course, Brandon.

This'll take a little while to finish. Started a while back, just tough to "finish". I'll probably edit it here and there. 

Backtracking a little...

I don't know the time when Brandon's comfort care was withdrawn. Everything was explained in advance, what would happen, etc., but honestly, it's such a blur now, I don't remember all the words and only partly remember the steps. Had to have been at least 7 AM. A lot of it, I don't want to remember if I'm being honest. It just hurts too much.

The nurse had left to get pain meds "just in case". I'd consented to that. Yes, please keep him from being in any possible pain or stress. She came back and had them ready and began turning off monitors and machines and started stopping the fluids flowing from their various bags into Brandon's arm. The alarm for low BP and low heart rate was already off; had been since the time I got there at 12 something earlier that morning. Couldn't believe it, it'd already been several hours. It'd all flown by in a rush. 

She removed the BiPap mask from his face and I noted with surprise and dismay the heavy mark on the bridge of his nose where it'd been sitting. She replaced it with an O2 cannula on a high flow to supplement his oxygen. Without the heavy sounds of the BiPap pushing air into him you could hear how ragged his own breath sounded. 

Death rattle. I'd always heard of that happening towards "the end" and now I was hearing it with my own ears coming from my husband. Kevin had moved over to the side of the bed I was sitting on and held Brandon's arm and put a hand on my arm, too. I hope Brandon knew he was surrounded by love and was not alone for this part. 

We sat with him and watched as his heart rate slowed down and blood pressure slowly dropped. It was agonizing and so full of the heaviest emotions one could ever possibly feel (for me anyway).

"The future disappears into memory/With only a moment between/Forever dwells in that moment/Hope is what remains to be seen".  (Rush, 2012, The Garden from Clockwork Angels)

Shortly following the withdraw of the comfort care, my best friend "left". He was free from pain, from agony, from fear, from horrible tests and his disease that so many others are plagued with. For that, I am grateful. Losing him however was the worst thing that I've ever experienced. It was like time stopped and sped up all at the same time. A strange twist of events. Suddenly faced with a new life (or lack thereof? how can one exist without their friend?) without. Brandon was gone. 

It made me catch my breath at the finality of it. It still does when I dare to look back and remember those moments.

We sat with him for two more hours...partly in silence, partly in quiet commentary on what had just transpired. I held his hand and felt it grow cold, felt him grow colder. He'd already felt chilled to me as time had gone on with us sitting there. 

Couple folks came into the room; one for emptying the sharps container, another I think to clean. Both made fast exits upon seeing the scene before them. Mumbles of apology. <queue hilarious laughter from me; 'boy, imagine their surprise seeing THIS when they came in'> I think Brandon would have gotten a belly laugh at that, honestly. Major 'uhhh' moment. 

Eventually, I didn't "feel" Brandon anymore and I said, 'hey...it's time to go,' to our friend. 

Together, stiffly, we packed up the few things that'd been moved down with him from his regular room and we left Room 5 from the MICU at Thomas Hospital where earlier in the day, my husband died. 

Forever, I'll miss you, babe...

Heartbroken...Monday, Monday

I don't remember what time our friend got there but in the time it took, I played some music for Brandon on my phone. The Garden - Rush, Time Stand Still - Rush, Bravado - Rush, Hold On (live) - Sarah Mclachlan to name a few. While Hold On was playing, I lost my shit so bad I wondered if I'd hit the floor. 

I'd also been talking to him and noticed a couple times, once while playing Hold On, that he had tears falling from his eyes and a deep furrow in his brow. The other time I saw tears was when I arrived. 

I wiped his tears with my fingers and eased the furrow up and told him to not be sad. I told him to remember the conversation we'd had just a couple weeks back before he was hospitalized. The one where I said when it's too much, you tell me and we'll stop everything and make sure you're comfy and surrounded by calm and peace, either at home or in the hospital. No more tests, no more procedures, just happy pills or drugs.

I wish we'd had time to get to that point; that he'd already had his catheter placement and we could have gone home to have the last weeks at home instead of just having a few hours in a hospital for his last day. 

I talked about some of our camping trips reminiscing about one of the hikes we did through Sitton's Gulch in NW Georgia, while staying at Cloudland Canyon State Park. I was hoping to see a spark or something in his eye. 

He'd turned his head once when one of his IV alarms sounded, moved his left arm above his head, moved his right leg from under the blankets, but still, no physical recognition of my being there. And, that was all early on right after I'd gotten there. 

Kevin, our very dear friend got there a little after 2 I think and sat on the other side of the bed and held his left hand. I was holding his right. Around 4 AM one of the other nurses came in and asked if she could get anything for us. Coffee? asked Kevin. Shortly after, she brought in two fresh cups of coffee with creamer and sugar packets, having brewed a fresh pot of coffee for the two of us while we sat with Brandon.

Elaine would come and go from the room with more fluids and I kept wondering when. When? when. It was a desperate feeling and a scary one but it was ever present. 

At some point, after our coffee cups were pretty empty and we both had coffee breath, I had to use the restroom. 

I stood in the bathroom for a few extra moments and just stared at myself. What in the hell are you going to do, girl? my reflection asked me from the mirror. I had a headache coming on. No sleep, been up since 6 something the day before, Sunday the 5th. All I wanted to do was curl in a ball and forget for a while. I don't know what time it was.

I'd called both my folks and Brandon's Mom and sister already. Told them where I was, what was happening - what was about to happen. Probably both in preparation for me and for them for the next part. I really thought I'd cry and said to Kevin, this is going to be hard to do. But, I didn't. 

I felt detached, like someone else was holding the phone and talking to my parents and Brandon's Mom and sister. I think I heard my Dad cry. Eloise did and I think Page did, too.  

Eventually, we wandered out to find some food; the cafeteria was still closed at around 6:45 am. We figured they'd be opening soon. We could see the folks inside setting stuff up, tried to find the opening hours but even by 7 the doors didn't open. I wanted to go back upstairs, which we did sans food. Vending machines to the rescue. Dr. Pepper and Chili Cheese chips for me. I think Kevin got a Coke Zero and a Pop Tart. 

We resumed our vigil on either side of Brandon. 

Shift change came about and the new nurse came in and checked things, changed out fluids, added some stuff and there was some conversation about the next steps.

Remove the comfort care, remove the BiPap mask and if I'd wanted it, add some pain meds which she had to order "just in case" and stuff would begin to accelerate as it were. 

Are you ever ready? is anyone? 

The next hour was the toughest I've ever had in my life. 

Heartbreak

 June 9, 2022

Sunday night, June 5th, I got home a little after 8. One of our neighbors had called to say that the delivery of the hospice equipment had arrived and per our earlier chats, she'd let them into the garage to dump it off. I was slightly irked because no one had contacted me ahead of time to make sure someone could help in my absence. Checked my phone, nada. A text from another neighbor checking in on me and the call from Jamie that I was currently having. I was roughly 19 minutes away from the house at that point.

Phone rang again and it was the hospice nurse asking if they'd delivered the equipment. I told her, yes, but I'd had no phone calls. Wound up that they'd called Brandon's phone, not mine. Chatted with Jamie for a bit after I pulled in after which I tidied up in the living room where Brandon would return after his procedure the next day. 

I got settled down a while after 9 PM with some show on the tube. I'd made some eggs, a couple slices of bacon and grilled polenta and was working on a glass of wine when my phone rang. It was 10:44 PM.

"Hi, Mrs. Milam? this is Katherine from Thomas Hospital, we met earlier this evening..." 

She went on to say that Brandon had called them stating his breathing was getting difficult and if I recall correctly, he'd even called out to the hallway for help. BP had dropped down again and he was having runs of AFib. She went on to say that he'd been moved to the ICU. 

I just sat there for a few minutes trying to absorb what the call had been about. It was a sort of WTF moment. I took a sip of wine and just sat there for a few. I got up a moment later and got the number for the ICU on my laptop and called them. 

They put me through to his nurse, Elaine, who told me some info; he was having difficulty breathing, lot of fluid accumulation in his abdomen, breathing is worse, they'd put him on a BiPap mask. BP was down considerably. She explained a little about what the BiPap mask did, as I'd heard of one, but not known what it did. She went on to say he's on a full code, that they'd asked him if he wanted to be intubated "if" to which she said he'd agreed. I rushed to my bathroom, threw on some clothes, brushed teeth, peed, called his sister, texted my folks, etc.

I made it to the hospital a little after 12 AM Monday morning and rushed upstairs to the MICU, room 5. There, I saw Brandon and the difference from a few hours earlier was shocking to say the least. 

Half of his face was covered in the mask for the BiPap machine. He was laying pretty much flat on his back which he's not done in over a year now due to his pain. One of our pillows from home was under his head under one of the hospitals pillow, another was under his left arm. 

His eyes were open, but I don't think *he* saw me. He as in the outward facing Brandon that I was seeing. I think somewhere deep down Brandon knew I was there, but there was zero physical /visual recognition that I was standing there. 

The BiPap was pushing oxygen in with every breath he did on his own. The sounds were loud, very exaggerated movement of his chest. I asked Elaine if he was in any pain. 

She assured me he was not and explained stuff to me. The BiPap was not "breathing" for him, rather, helping push O2 into him when he inhaled. The fluids they'd started him on were for the edema and basically keeping him there for me and anyone else that was coming to be with him for these last few hours. They were "comfort care" fluids. However, due to the fact that they'd been pushing so many fluids, the expectation naturally was that his body would have more output of fluid via catheter as well and that was simply not the case. Essentially his internal organs and body were shutting down. 

Thud. 

I nodded and part of me wanted to scream and rush out into the night and just run. The other part started really absorbing. She went on.

Once these fluids run out, we can provide some additional meds if you want us to for pain. However, he's not experiencing any pain right now. She said she was going to talk to me as a nurse, then as a woman. 

Nurse: We can do an intubation once the comfort care fluids cease but I want you to know it'll be a violent thing for him to go through and it will not save him. It'll only keep him alive for anyone else to arrive here and once it's in, we can't take it out until "after". We can also do chest compressions, but again, will not save him. Likely, it'll break his ribs due to how advanced his disease is and it being in his skeleton already. 

Me: I shook my head and said no. He'd not want that, I don't want that. 

Nurse: it'd also be very hard for you to see as well.

Nurse as a woman to me as a woman/wife: I lost my husband 10 years ago and it was very much like this. I know it's hard, but I wanted you to know it from both sides.

She was very quiet in her demeanor, moving purposefully. Calm. We had some more conversation while I was trying to call our friends, Kevin and Christina. Somehow though I kept getting the VM of a guy named James. My brain was wondering why Kevin sounded totally different, so I texted the two of them. Please call me. Being as it was now after 1 AM, silence. 

I said out loud, I'm going to call his girlfriend and Elaine turned around and looked at me curiously.

Me: Oh shit! No, not Brandon's girlfriend - wait, I mean, he doesn't have a girlfriend, his girlfriend is me, I mean, I'm his wife! He doesn't have a girlfriend, his best friends girlfriend! Christina. <exploding in hysterical laughter> She waved a hand dismissively and said, nope, all good, I've seen some stuff here in the ICU that would blow your mind...

Meanwhile I reached Christina who sounded wide awake although I'm sure she wasn't. I told her, please guys, can you come over...Brandon's in ICU and it'll be soon. 

Continued...

Anticipation, then Heartbreak - Long Post - Part I

 It's Wednesday, June 8, two days and a few hours since I lost my love, my best friend, my husband Brandon. 

Backtrack - 

Friday, the 3rd, he was moved by ambulance down to Thomas Hospital in Fairhope. Mobile was on diversion, basically meaning they couldn't accept patients. Thomas had a room open up so they went down there, lights blazing, sirens screaming at speeds faster than I felt comfortable following in our car. Honestly, there was no need in that urgency - just drive like a normal person. Seriously. He wasn't in any trauma. 

The plan was to do the catheter placement into his left lung space, similar to what he'd had done in his right pleural space back in March. When? Well...

I get there, find his room, he apologizes and complains how ridiculous it was too that they went that fast and for what? 

His nurse came in, got all his info, loads of questions and he began his stay there. I left around 7:30, I think and went on home. 

Saturday, I got up at my regular "work day time" and was in the kitchen, pulling on a shirt, grabbing coffee, and trying to get pups and birds ready for the day for when I was out of there when my phone rang.

Hello, Mrs. Milam? This is so and so at Thomas? Your husband is fine, but he wants to be discharged. Me - w t f? What happened? Nothing ma'am, he's just a little distressed...are you on your way? Me - Yes, running out the door in a minute. Take your time, he's fine, we're not discharging him, but he'd asked me to call you and find out if you were coming down. Me - of course, of course...

I get up there and he's sitting on the edge of his bed with his arms braced on either side of himself, head down. 

'I just want to get the hell out of here, I hate this place, Mel'. He wouldn't tell me if anything happened no matter how much I asked, so I dropped it. 

I helped him get into the recliner that was in his room, got him comfy and got into his bed and spent the day with him. 

Things I noticed (hindsight): confusion, what looked/sounded like aphasia, frustration, no interest in food, frequency and intensity of coughing and the junk he'd produce at times with that, just weird things that no one seemed to be too concerned with. That's my perception. 

Nurses came and went of varying levels of experience. Housekeeping, etc. Never talked to any surgeon. I did talk to one of the nurses at the cancer center; she'd been in touch with his oncologist and his CRNA. She was quite frank and was one of the folks who'd said it looked like it'd be two weeks if not sooner. 

Talked to the respiratory doctor who helped him through one of his horrible coughing bouts, the "hospitalist", etc. The hospitalist stated that what she understood was going to happen was that they would be replacing the catheter he had in his right lung space to which I got a bit "irked".

Me - wait a minute, MY understanding of why he was rushed down here so fast was to put in a catheter or some other drainage mechanism in his LEFT lung space so that we could do drains of that lung at home. There was NOTHING mentioned of anything with his right lung space. Am I missing something? 

Hospitalist - well I guess we have some miscommunication. Yeah? Ya think? 

She asked me about what I was doing to drain his right lung and I hauled out one of his drain kits and a dressing kit and showed it to her, showed her where his cath was. She asked who was managing that? Me. And you are? Me - the wife. Her - well it looks like you're managing that well. Me - yes, well, we've been married for 23 plus years, I'd hope so. 

She left marking notes on her paperwork to update info - still didn't know when etc., that the procedure would take place except - sometime Monday. 

He got coughing and agitated later in the day and they wound up giving him a 1mg tablet of Ativan, his cough meds and a Guaifenesin. Change was pretty quick and kind of alarming, too. His breathing relaxed and intervals between were getting longer. One of his nurses said, is this recent? I said it's new...he'd been sleeping with his eyes open for a little while now (yes). But this deepness (I couldn't get him awake) was new. Scared me, quite frankly. 

I stayed til about 7 Saturday night and got him awake enough to hug and kiss him and tell him goodbye. I grabbed a few groceries, had some morbid thoughts pushing my cart through the store, had a moment back in the car before I drove the 45 minutes home. 

Sunday morning, wash/rinse/repeat. Back down there a little after 8. Sunday was weird. He was agitated from time to time but verbally, things were even odder to me. He had difficulty articulating what he wanted; move the blanket from behind me - it was a pillow. Take the pillow off me, it  was his blanket, etc. It wasn't always the same thing every time, pillow would turn into another word and I'd have to try and figure out what he wanted. I got a little frustrated because I couldn't figure it out. 

It was just a rough day. His coughing was worse, BP was trending down, his telemetry monitor was doing crazy stuff and had been since the day before. One of the nursing assistants came in several times, checked batteries, checked connections, etc. Finally called the nurse...they came in and checked his BP a couple times; somewhere on a notebook, I've got the readings from every time they did it when I was there. And, he was having runs of AFib.

I did get a couple spoons of apple sauce in him, a sip or two of an Ensure drink (that didn't work out great), a sip or two of a shake I'd made from home, and a few sips of water here and there. 

He got very upset when around 7 or so I told him I had to go home to get some rest, that tomorrow he was going to have the procedure and I needed to get home, do domestic things and would be back bright and early in the morning. I stayed a bit longer and tried again, same reaction. He fell asleep and I finished gathering my things and woke him up at which point, he stared right at me and said "Okay" when I said I was leaving and "I love you". Kisses/hugs and I left feeling like a huge shit. 

He didn't seem like Brandon. 

Here we sit...

 June 4, 2022 (Continued)    

Brandon's parked in the recliner here in his room and I'm sitting on his bed stretched out. TV's on for background noise He's sacked out and has been for almost an hour now, hallelujah. Anti-anxiety meds have helped as well as the cough meds. Fits of wakefulness here and there, but for the most part, he's pretty zonked out, now.

Talked to one of his nurses early this morning. He'd told them he wanted to be discharged, so they called to tell me and reassure me he was fine. I got down here and he told me the same thing - I want to get the hell out of this place and go home. Never got an explanation "why". Thinking maybe it's due to our last visit here where we waited for hours in the ED waiting on a room back in March. No clue. Anxiety surely plays a huge part in it as it has the last couple weeks. 

One of the nurses from the cancer center was here and came in and talked to me a bit. Said that his oncologist and a pulmonologist here had been chatting about his case and reiterated the plan. The plan being to put in a cath to help drain the fluid without having to pack up and go to a surgeon OR pulmonologist and have them do it only to have to return in a few days to do it again. 

No problem. 

Problem though...? it's Saturday and it probably won't happen until Monday. She DID say if he wants to be discharged, they could send him home on palliative care and come back and do it outpatient. <Me mentally making "urgh" sounds and crossing my eyes and all sorts of other sound effects/faces> 

We could conceivably do that - go home, BUT,  hospice/palliative care is still being worked on - Eff. Talked to a social worker here and she's going to work on THAT. 

Since then, I've had two chats with two different folks - one a neighbor and the other, our very dear friend, Laura who have both said they can be there if/when Hospice states they're on the way with a couple things we'd need/have requested for at home care, so maybe not a problem? They can get into the house and deposit stuff, etc. <PLEASE IGNORE MY TORNADO OF A HOME! :) > I've not really been home in almost two weeks, so there's laundry on top of the dryer, etc. 

Talked to her a bit more - the nurse from our oncologists offices and unfortunately, it looks like time is pretty short. 

How short, no one knows for sure, no one can put a time on stuff. I know they've seen this way more than should be allowed or possible, but it is a part of life. The crappy part. 

She did say what another person had said though - 'two weeks'. <thud> 

How does one survive this? 

The latest...

 

June 4, 2022 - We're down at Thomas Hospital and stuff has accelerated a bit, maybe even a lot. They came in about 30 minutes ago and had him use his breathing tube to help vibrate up some of the junk in his lungs. Also gave him some cough meds and some anti-anxiety meds. Thankfully, he's relaxed enough to sleep.

Monday, May 23rd 2022, we went to the ER as Brandon was short of breath. He got whisked right back and was already being gowned when I got back into the hospital from having parked the car. We hung out in the ER for several hours and our very dear friend Kevin showed up and hung out with us all day. 

I don't remember the time, but eventually, they moved him up to a room and we stayed with him until a little after 9 pm. I talked to my dad for a bit on the ride home, crying. As always he had some perspective. Tough but I still need to keep my head up. 

After I arrived home, I did a few quick things then headed to one of our neighbors and sat up with her til almost 1 in the morning. Cried, had wine, laughed, cried some more, lamented on life in general and what a complete shit show stuff is right now. 

It was suggested that due to his condition; not eating a lot, not moving a lot, etc., that these were "signs". Honestly? he's so frail right now it's scary. 

He stayed at the hospital in town until yesterday afternoon. I went up every day for pretty much all day. Stayed in touch with family, friends and work. He had two Thoracentesis procedures done while he was there, both produced over 2 liters of fluid from his LEFT lung. Also had a CT and a bronchoscopy done. 

Unfortunately, his right lung is pretty much "fubar". Encased in tumor, very edemic and really there's not a thing they can do with it. As such, it's "off the table". So..next. Dr. Paul, general surgeon said it's possible they could place a catheter like the one he has in his right chest wall to do the same thing for/from/to his left pleural space. Internal Meds doc said pretty much the same thing yesterday, IF Brandon was up for it. Brandon gave a thumbs up. So here we are, now. 

Unfortunately, it looks like it won't be until Monday that they can do the procedure. So, now we wait.

Continued...

Complications or some such - Part 2

 

May 8 - Complications Continued

Thursday the 5th rolled around and we went to Brandon's PET scan down in Daphne. I dropped him off at the front door and went to park. We now have a handicap placard and plate and I took advantage of it and parked in a spot designated for someone with those credentials.

Went inside, filled out paperwork, paid co-pay and Craig came out and whisked Brandon away. I went out into the bigger lobby of the establishment to get away from folks who were in the waiting room where scans, etc. were being done and settled down to continue working.

After a while, I felt my phone vibrate and saw that Brandon had sent me a text; it was a screenshot of the transcription of a VM he'd gotten from our pulmonologist. Basically what it said was that they got the cultures back and that he has a wicked infection, something called an Empyema. Won't go into the details of that, hence the link. Not something "great". 

Pulmonology called in a second round of the same antibiotics now that they knew what it was. Another two weeks worth of the same stuff they'd prescribed the day before. Bring on the pro/prebiotics! 

We basically went "blah" over the weekend. 

Roll on Monday, the 9th - Today. 

Brandon had his ultrasound scheduled for the afternoon. I also placed a call to the cancer center to see if we could talk to them about doing something more for pain management. His pain has been getting worse. Worse to the point that some frank things have been mentioned on what a struggle everything has become and how unhappy he is (me trailing off here as that was difficult to hear again).

Again, NOT about me, but imagine hearing those words. Anyway, ultrasound was fine, no blockages, so Yay for that! 

Moving along...short while ago, my phone rang and it was the cancer center. One of the CRNA's had called me back and said they got the results of the PET Scan and asked if Brandon was present - yes. They wanted to talk to both of us. 

Here goes: "Not surprising, but the cancer is somewhat worse, new bony lesions, specifically ribs." I think he said on the right side AND his right lung "lit up". I mentioned the visit to the pulmonologist and the Empyema and the Induration as well and oncology said oh, well that could be the lung looks like it does. He wants to see us in a couple weeks after the antibiotics and " go from there".

He did agree to starting the injections to help with his bones and strengthening them. We should start those this week. 

So...that's where we are with things now. 

My goal - make hubs as comfortable as I can, somehow learn to ask for help even though I don't know what I (we) need help with?, take a minute for myself (walks, naps, goofy videos, stupid games), and just "be". 

Just keep moving

Complications or some such - Part 1

 May 8, 2022

As if things aren't already hectic...

Last week was a bit of a whirlwind. Monday, we were slated for Brandon's PET Scan. however upon arrival were informed that THEY had him on their schedule for Monday the 9th. Monday the 2nd was a 9:00 AM Appt, so while I didn't know the time they'd had him scheduled for on the 9th, I can only imagine it was for 2 PM? Maybe they'd transposed their times/dates. 

Craig the radiologist invited us to come back with him to where he ran his scans. There was actually a lady in one of the rooms waiting on her scan and another person having theirs showing up on his monitors. Again, I felt good that he was earnest to talk to us and help us get this appointment rescheduled. So, that was the goal he had then and there. 

He talked to us for a couple minutes, reminded Brandon of the do's and don'ts 24 hours before and the day of the scan. He'd gotten us in on Thursday the 5th at 1 PM. 

Wednesday rolled around and our appointment with pulmonology was that morning at 11:45. Dr. comes in and says, "you're not supposed to be here until later in the year, what's going on?" Well, he's had this cough and it's not gotten better, wicked edema here (pointing at Brandon's side and his legs and feet), his fluid from his cath is "gunky" for lack of a better word, his bandage had some gunk on it from around where the cath comes out of his chest and Sunday, he was literally leaking fluid from his scar. Like soaking wet leaking, making his sheets and his clothes wet and upon walking into the kitchen, leaving drips all over the floor. 

Doc asks for a syringe and taps Brandon's cath and I saw his eyebrows disappear. Think, extra chunky. Yes, that bad.

Me: "See?" Him: "Yeah!" then says to me, "come here and hold this," and handed me the syringe. 

He's frantically trying to stop the cath from literally spewing fluid and wiping up Brandon's pants and the exam table. Got all that squared away and started talking about the edema after one of his nurses came in and took the syringe to have the contents cultured. 

The area around his scar and where the catheter comes out that is hardened and painful is called Induration - generally, a firmness under the skin happening around incisions and often due to poor lymphatic drainage. Hmm. He went on to say that there's obviously some kind of wicked infection going on, no fever, but with the visual of the fluid and the color and the "stuff" in it, very obvious something is going on. 

We'd brought a dressing and drainage kit and he used it to try and drain some of the fluid but got maybe only 10 ml even with manually trying to express it with the pump. Nada. I think the tube is blocked up with gunk personally as we've not been able to get a whole lot out here lately. 

He ordered an ultrasound for him to be done ASAP to check for vascular blockages that might be causing the edema, put in an order for an antibiotic and said we'd talk lymphedema if need be. He talked a little bit about the fact that his albumin levels are low and that he has something called Hypoalbuminemia (say that three times fast). He said that he needs to take as many of the protein shakes as he can handle, eat more protein - fish, chicken, vegetables. Small meals if necessary to help with this. Check! 

We went home armed with some new info and went about our day.