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. 

Learning new things...

May 2

Two weeks ago on the 21st of April, I took hubs to the oncology center as it was a chemo day. We left all our stuff out in the car "just in case" he wouldn't be receiving chemo. Usually, if I'd not taken that day off, I'd work from the cancer center, hospital or wherever we happened to be for an appointment/procedure that day. Laptop, lap desk, headphones, etc. He'd bring his laptop too to do the same or just browse. Didn't bring anything in with us that time. 

Labs done, we went with one of our nurses back to the infusion room - vitals taken, corner picked out. She brought us our drinks and we sat down to wait. 

One of our "regular" nurses comes out with a paper in his hand and said as he approached us that he wouldn't be getting chemo that day - Thursday, April 21. Labs were craptacular. 

His ANC's (Absolute Neutrophil Counts) were quite low/almost non-existant and chemo would further destroy his immune system/blood cells. He talked to us a little bit about stuff we could do to help rebuild them - a calcium supplement (he suggested Caltrate), Vitamin D3, Sunshine, food with loads of protein, etc. 

Yay! I was happy he gave us some ideas!

We went home, but not before a stop on the way to get a couple things from the store first. I also had to stop at my office away from home to get some stuff too and we went on with the rest of the day.

Days after: Cue up studying music and the world wide webs - give me easy to understand language for this list of results. I typed up an excel sheet with the big stuff they mention all the time from labs. The tests themselves, the numbers resulting and the numbers that are the low/high norms, a note and a definition of each. I looked back at previous labs we'd been given and wow, the fluctuation. 

Fast forward to last week, April 28. Same deal, pack up, go in but leave stuff in car. Labs, vitals, back to an exam room instead of Infusion Room. CRNA comes in and sits down. I was ready.

Labs HAVE improved, ANC is normal, WBC and RBCs are still "low" (just slightly out of range, but still low) as well as some other numbers. Platelets are improved and w/in norms, but...

They did not want to do chemo without getting a PET scan first or some type of scan to see where he is. He was slated to only have one more session but with his numbers being low the last two times and some just slightly elevated, they did not want to do it and risk harming him even further. So. Here we go. 

I had a notebook with me with symptoms/stuff written down on things that are either now present or have been getting worse; Edema - both legs/feet, excessive fatigue, some confusion on days of week or appointments, what time it is, etc., lack of appetite - EAT THE FOOD (says mean Mel), Cough - increased, cold all the time (meanwhile, I'm trying to start menopause so I'm flashing left and right), etc., ad nauseum. 

Cough - well, we can give you another refill on your cough pills, Tessalon Perles, or they could even give him something with codeine in it. Edema - she felt his legs but not a whole lot of comment or anything further on that. I did mention Lymphedema and eyebrows went up, but nothing much on the other stuff really. I am not complaining but I'm complaining if that makes ANY sense. 

Eventually, she left and brought the oncologist himself in and we heard the word that no one wants to hear. 

Conversation went something like this: "So buddy you sound terrible - we could hear you in there (general wave back behind him where the nurses/doctors do their thing in a big room in the middle of all the exam rooms - accessible by doors leading out of each exam room). We need to get a scan and see where things are. I don't think the chemo is helping much now and if we see what I think we'll see, we'll stop altogether and move you into hospice." 

Thud. 

He talked to us for another minute or so and I remember him saying we'd have care at home, so he wouldn't have to come IN for treatments for pain/whatever. I don't remember a whole lot else. I got a little upset when I asked the nurse a few more questions and we left. 

Not a whole lot else to say in this one - to be continued....