I went back to the hospital on Wednesday to let them hydrate me again. They don't just give me fluid, they add electrolytes and stuff to it as well. Whatever my body happens to be running low on due to the Cisplatin (chemo drug). Usually potassium, magnesium, and sodium. They also give me an extra strong dose of anti-nausea meds, sometimes they give me steroids. Whatever my body tells them I need based on the gallons of blood they take out of me every week. When they hydrated me on what I and Dr. Kim refer to as Meltdown Monday, I felt loads better afterwards so I was very agreeable about popping in and doing it again on Wednesday. Unfortunately, it didn't seem to have any effect on me on Wednesday other than making me have to go to the bathroom every 30 minutes all day long. Bleah. Meanwhile the non-stop nausea from the chemo treatment was continuing on.
On Thursday my TEP fell out so I contacted Jo Ann and I went and saw Dr. Miller about it right away. I was surprised that I didn't have saliva running down the inside of my stoma and choking me, which was their concern too and why they got me in so quickly. It turns out that the puncture for the TEP had closed up on the other side so it was sitting in a dead end cavity. This was good news because it meant I didn't have to get the TEP reinserted to plug the hole and stop saliva. On the flip side of the coin though, I'm pretty sure that would be the reason the TEP stopped working thus not allowing me to "speak". You need some kind of air flow to produce noise with a TEP and it wasn't getting it. Sheesh.
Thursday night baby doll and I went over to his brother's house. I had a revision of my will witnessed and notarized. So that is once again set.
Friday I let them hydrate me one last time. Once again, I didn't feel any better or worse due to it so I decided I'm done with those. Going to the hospital for 4 hours every other day just to get fluids in you is kind of ridiculous.
Friday night I had tickets to the Odd Couple at GEVA. It was a really good show! I managed to stay awake through at least half of it. Okay, okay, some of it anyway. I enjoyed what I saw. Baby doll said it was good. :-)
That night I was up every single hour using the facilities again due to the hydration. So, I had no sleep. Plus, since that 4 day chemo pack, my body has been doing weird things and I was still trying to get a handle on what was going on and how to deal with stuff. Needless to say, we were supposed to take off for Atlantic City on Saturday morning and it didn't happen. I had another mini meltdown. I told baby doll that I simply wasn't feeling well (I had started running a low grade fever the night before) and that instead of being excited to go on our trip, I was this little ball of dread. I didn't want to be in some strange place trying to figure out what was going on with my body. And no matter how well I pack, there is so much involved in my care now that I know I would miss something. Being the incredibly fantastic man that he is, he had no problem canceling the trip. The tickets to the Wayne Brady show were not refundable. We e-mailed them to my friend T who was also going to be there that weekend but I'm not sure if she ended up getting to use them or not. Baby doll is working on trying to get at least a partial refund for the hotel room.
Once my mind was relieved of the stress of the trip, I ended up having a truly great day! When baby doll first got there I was out puttering in the yard. He went and got some gloves and we puttered together for a few hours. He ended up edging the small side garden and the entire front of the house. He did a fantastic job! It looks awesome! Not to mention his labor is free of charge. I had requested a quote from a local company to come do three things in my front yard. 1. Edge all walkways and flower beds. 2. Fix the torn up sod from the snow plow. 3. Power rake. The quote came back at $550. Yeah, I don't think so, thanks anyway. While he was edging I dismantled my little stone walkway, pulled up every weed in sight. Got smart and laid down a weed barrier this year, then had baby doll come over and "build" the stone walkway again. It looks fantastic!
Next on the list was a little retail therapy. We went to the pet store and stocked up on dog food and flea drops. Then we stopped off at Clover Furniture because I've been wanting a patio set. Nice stuff but when I think of a patio table and chairs, I DON'T think of price tags ranging from $1200 and higher. Holy cow! Then we buzzed down to Walmart where I stocked up on kitty litter and some other sundry items that I needed. Their patio furniture, at least the price tags, were much more in line with what my brain would have guessed. I found a set that I really liked but when we looked to see if they had it in stock, they had the chairs but not the table. It was one of their "Mix and Match" styles so I can imagine that happens now and then. I wanted to look around a little more anyway before making an actual purchase. Next up was Home Depot where I bought a dishwasher. Baby doll said the experience was a little surreal. I walked in, saw one I liked, bee lined over to it. Did a quick loop to look at the rest. Went back to the first one and said "I'll take it!". So, that will be installed tomorrow afternoon. Thank goodness because I've been having to re-wash about half the dishes by hand that come out of my current dishwasher. That certainly isn't doing me any good! Then it was off to Wegman's to grab the ingredients for baby doll's din-din and home to unload and refuel.
I grilled up a couple of burgers and got my handy little deep fryer out to do up some french fries in the way they were meant to be done. Burgers are one of baby doll's faves. When we go out to eat, if he doesn't order something with a Mexican flair to it then he often orders a burger. Based on this I've collected a number of Mexican recipes over the past year and four months to feed him but for some reason, it never occurred to me to make him a burger. How weird is that? Well, he finally got to eat a Quinny burger. Hell, I finally got to try making a burger. I'm assuming that I've made them before but it's obviously been more than a year and a half since I last made them since he hadn't eaten one. It turns out spraying your grill with a little non-stick spray ahead of time might be a good idea. I had trouble with stickage. Also, I bought a pound of meat and made two burgers out of it. I used the 80% beef so I thought there would be quite a bit of shrinkage. Yeah, no. I think if I had been serving them on a kaiser roll or something a little on the stiff and hearty side, I would have been okay. But I had soft, white floppy burger buns. Personally, I think the burger to bun ratio was way off. Other than that I thought they came out okay. Luckily, baby doll thought they came out fantastic. And he then proceeded to prove that to me by eating both burgers. Yeah, over a pound of beef went into his tummy. I don't know where he puts this stuff half the time!
So we were now refueled and ready to continue our adventures. Baby doll said that Big Lots often has nice furniture at discount prices. We checked it out. I found a table that I fell in love with but I didn't like any of the chairs they had. It went on my list of maybes. Nothing struck me at Lowe's. At this point in time we're on the other side of the city near what most people consider a "nicer" Walmart so we decided to pop in there to buy the set that I had liked at MY Walmart. Yeah, didn't happen. They didn't carry that set. WTH?? Now I'm getting tired, I'm starting to feel sick again, my low grade fever came back and all I want out of life is to buy a damn patio set. It was at this point in time that I realized that I had not been nauseous all day long. It was the first time since the damn chemo treatment that I did not have nausea going on. I did a little dance. Anyway, while at this bullshit Walmart, I DID find chairs that I liked. So we decided to buy chairs and cushions at Walmart and go back to Big Lots for the table I had fallen in love with. The chairs were marked with "rollback" pricing. They ended up being $15 a piece. CHEAP! The cushions were another story. Almost. I picked out the cushion that I liked and of course, that's the one cushion where there's not a price in sight. I checked all of the shelf tags and the only one that I could find that seemed to match said they were $38 a piece. OUCH! But. I liked them. Thankfully, when we got to the register, they rang up for $18 each. That was much more in line with what I wanted. On top of that, I was looking at the receipt as we were loading up the car and for some reason the cashier had discounted one of the cushions back off of the receipt. Happy birthday to me.
Back at Big Lots we measured the table. Turns out it would fit in the back seat but not the trunk. The chairs were already taking up the backseat. It is now 8:20. They close at 9:00 and as mentioned previously, we're kind of on the other side of the city. Can we do it? Can we make it in time??
Why yes, yes we did. Ladies and gentlemen, I would like to introduce you to my new patio set:
One of the things we were going to do in Atlantic City was go to the arcade on the steel pier and play games and win prizes. I decided that just because we stayed at home doesn't mean I shouldn't get prizes anyway. So there's a crane machine in the lobby of Walmart. It only took baby doll three tries to win me Lucky Sunrise. How bleeping cute is he??
Sunday sucked. I felt like death. I couldn't breathe. As the day progressed though I started feeling a bit better so I decided to have baby doll take me to the Garden Factory so that we could start figuring out the plan for my vegetable garden.
I should add here that a decision has been made to change the scope of the garden project. The large, elevated, horseshoe shaped garden I had planned was likely going to be a permanent fixture and since I'm only going to be around to use it this one summer, it didn't really make sense. Jamie sure as hell isn't going to want to mess with that thing in the backyard. So I decided I wanted to do something smaller and that could be taken down at the end of the summer. The new plan is to first, build a platform to cover the unsightly concrete slab in the backyard. When I first moved in there was half of a brick oven built up on this thing. I dismantled and ditched the brick oven but have been unsuccessful in removing the slab it was on. My friend Luke came over with a sledge hammer a few years ago to try and break it up. Turns out I will need a professional for removal and I have yet to find one. The dimensions are 60" x 30":
Since I can't seem to locate anyone to remove this thing, I figured the next best thing would be to cover it up. So we're going to build a platform to place over it. I am then going to buy an assortment of cool and classy containers to plant some select veggies in and will decorate the platform with them. That way at the end of the season Jamie can simply dump the containers and store them in the garage to be used at a future date or not. Totally his call.
The Garden Factory was fun but honestly, I like the selection of garden stuff at my Walmart better. Then it was off to Home Depot to figure out what we needed for our platform. After poking around by ourselves for a bit I decided that we needed the advice of a professional. We described what we were looking to do to some hot, young kid that was working back in the lumber department. He walked us through the entire project and took us around the store to buy everything we needed. Including a circular saw! So I now have a pile of lumber in the family room awaiting assembly.
So, no sleep that night either.
Which, by the way, it turns out if you get sleep deprived enough you start.....hallucinating? Sleep walking? I'm not sure what the hell happened. All I know is that I was at the counter crushing up some Excedrin. I closed my eyes for a second and Chelsea Handler told me that I should crush and take (8) Excedrin instead of just (4). She told me to go ahead and be a rebel. When I opened my eyes I was bringing the hammer down on a baggie that had (8) Excedrin in it. GAH! I hurried up and took four pills back out. The next time I closed my eyes she was laughing at me. She told me that the next time I saw Jose that I needed to tell him that he smelled like jaguar urine and run away from him.
Huh?
Yeah, I need to get more sleep.
Anyway, another night hacking my lungs out, waking up every 45 minutes. It was truly awful. Come Monday morning I had had enough. I asked baby doll to call Nurse Mary, let her know what was going on, and ask her if I should come in. 11:00 saw us at the Emergency Room with me being admitted for the night. <sigh>
According to the exrays they took, there's a new large spot of opacity? in my left lung that wasn't there just a week or two ago. Unfortunately they can't tell what it is. It's either the tumors spreading far and fast or it's pneumonia. They decided it's pneumonia and started running IV antibiotics through me. They once again had to pump me full of all sorts of electrolytes. Turns out there was some new stuff that came back at lower levels than it should so they replenished a whole bunch of stuff. On top of that, the nurse administrator said that I was "over watered". I didn't even know that could happen! She said I needed to cut back on drinking water. Dear lord, there's just always something new to learn.
So I spent the night in the hospital. My breathing was much improved and I finally got a little actual sleep. I found out the next morning, as luck would have it, my doctor, Dr. Kim, just got pulled in for floor duty in the cancer ward for the next two weeks. Talk about convenient! So he and his team stopped in to see me Tuesday morning. On a side note, I have no idea what ward I was in when I had my surgeries back in August and September but this time I was in the actual cancer ward and it's gorgeous! Baby doll thinks my hospital room was even nicer than the room he had booked for us in Atlantic City! You could easily fit three hospital beds into those rooms but every room in that ward is private. How nice is that?? Okay, back on track. Dr. Kim wanted me to stay another night. I said no effing way. We argued for a bit. I tried to explain to him that when you only have ~90 days left to your life, the last thing you want to do is spend them in the hospital. He argued back that we needed to make sure the antibiotics were going to fix things and if not, we needed to try something else. I argued, he argued, I eventually won.
My floor nurse, Samantha, told me afterwards that she eavesdropped on the team when they were in the hall discussing my case afterwards. I guess the nurse administrator was pissed that the doc was going to let me go home after just one night. She felt that it had been a huge waste of their time doing all those labs and bloodwork if I was just going to throw it all out the window by walking out of there. She was coming down on Dr. Kim pretty hard I guess. He finally told her that I had been his patient for many months, that he and I understood each other, and that he respects that I am responsible enough to bring myself back to the hospital if things seem to go downhill again, and that she just needed to accept the fact that that was our decision as doctor and patient. Yay Dr. Kim! He so rocks!
So Monday night in the hospital I kept feeling like I had stuff in my lungs but coughing was making absolutely nothing move. Meanwhile my breath was getting more and more shallow and I was sounding like Darth Vader. I kind of felt like I was dried out but the previous two nights I felt like I was drowning so it seemed weird that I would totally swing the other way in one day flat. I waited until baby doll got back from checking on the furballs and eating some dinner. I then tried dumping some saline bullets into my stoma and hoped I wasn't about to really drown myself. Well, it took four whole saline bullets but gunk finally loosened up and I was able to hack up all sorts of phlegm plugs that were blocking my breathing. I was like WTF? At home I'm too wet, at the hospital I'm too dry. What's going on with my body??
So they sprung me yesterday afternoon and sent me home on antibiotics. My fever is gone and has stayed gone but my breathing woes continue. Last night I started having trouble again but now I know what to do, right? So I dumped in some saline, hacked up a bunch of shit and was good to go. Actually managed to get a few hours of sleep last night even.
Today Sammy drove out from Liverpool to see me. She was kind enough to make a few phone calls for me to deal with the morons that seem to be a permanent part of my life. She got one set taken care of. The other set she will be working on first thing in the morning. For lunch I made her chicken and cheese quesadillas. I put the plate in front of her and she was like wow, I probably won't be able to finish this. Not too long later I look over and the second half of the quesadilla has just about disappeared. She was like OH! I swore I wasn't going to be able to eat it all but it was SO good I couldn't stop! This made me huff. It's pretty much word for word what Scott says about every other meal that I make for him. LOL! Maybe I should have him copy his P90X DVDs for her so that she doesn't start getting his shape as well as his appetite!
And Ethan was his usual friendly self. Sam sat down at the kitchen table and he was immediately in her lap, flopping over and simply lounging on her. She was like WTH? She said Does he even know that I don't like cats?? I told her that he really doesn't care. He kept following her around the house and talking to her. Which she encouraged because she kept talking back to him! Then she was grumbling at me that she had better not make it halfway home and find a stowaway. Then as she was leaving she asked if I had put her cat in her car for her. Ha! Baby doll would kill me if I gave away his mid-life crisis child. That cat really is something else.
Sammy also took me to my PEG appointment. I was so excited to finally be getting it replaced. Every time I syringe food into it, it immediately starts leaking back out. But not leaking out of the PEG, leaking out of the hole that the PEG sits in. Which effing hurts. Unfortunately the new PEG has not fixed this problem. It's still happening. Lilo thought it might be happening because the balloon in my old PEG was down to holding only 4 cc's of water. They recommend 5-10 cc's. She always puts in 8 cc's. She said the fuller balloon creates a seal that plugs the hole for the PEG so she was hoping the new PEG with the nice full balloon would stop it from happening. She even put 9 cc's in instead of 8 cc's. Well, that didn't work. When she took the old PEG out and went to put the new PEG in, a whole bunch of liquid started coming out. She asked me if I had eaten anything in the last 4 hours. I told her I hadn't eaten since the night before! She said that might also be the problem. For some reason my stomach is suddenly not digesting my food very quickly so it's building up pressure from the food sitting in it. Too much pressure for the balloon to be able to keep the food in my tummy. She said there are meds we can try to fix this. She told me to let her know how things progress so I will be sending her an e-mail tonight to let her know there is still a problem.
Other than that, Sammy and I gabbed about a bunch of my end of life stuff. She hates talking about it but once I'm gone it will be too late to ask me so she's trying to boot and rally since she's the one of the mighty trio who is truly in charge of all my crap.
As the day progressed, I was having a harder and harder time breathing. When we were making our way back to her vehicle after the PEG appointment I had to stop and wait a few seconds to catch my breath before I could make it all the way to the car. She left about 45 minutes after we got back home at which point I decided that I needed to do a cleanout with saline bullets again even though I had done one in the morning. Well, it didn't help. Now what? I thought I had found the new fix for when things were getting bad. So I decided that maybe I needed to start wearing the humidifier mask again. I brought the machine down from the bedroom, got it cleaned/filled up, curled up on the chaise, and put it on. 45 minutes later baby doll came home from work and woke me up. I couldn't breathe at all! I went back in the bathroom, did more saline squirts. Nothing. And I dry hacked, and I dry hacked, and I dry hacked. Hopefully heart problems don't run in my family because my heart gets beating so fast during these coughing fits, it's downright scary! So I'm in the bathroom, sitting on the edge of the tub, crying my eyes out, and wondering what my next steps were. The only thing that came to mind was having baby doll take me to emergency again so they could put me on an oxygen machine or something. Then I decide to try one more thing. The suction machine they sent me home with has no power to it whatsoever. But ramming a twelve inch catheter down into your lungs has to do something doesn't it? Provide some kind of info on what could be preventing you from breathing.
OH MY GOD.
Best idea ever.
I used one of the stiffer white plastic catheters and rammed that baby as deep as I could and then just started reaming things out like a rusty pipe. Well. That finally did the trick as far as breaking up the rock-like phlegm plugs that were gumming up my works. I started hacking up hunks of hardened gunk like you wouldn't believe. It was a beautiful sight to behold. Then as an added bonus, once all of the hardened crap was up, I started hacking up a gallon of liquid phlegm that was being blocked by all the hardened stuff. I spent a good 10-15 minutes simply coughing my lungs out. When I finally finished I went upstairs and did a happy dance for baby doll. For the first time since this morning I could once again breathe.
So now I have a new regimen for keeping my lungs clear. I hope this one lasts longer than 2 days! I just want to find my groove again and fall back into it already.
And now I'm heading to bed. I started this blog at like 8:00 this morning. What? I had a lot of stuff to catch you peeps up on! And tonight I've fallen asleep about 3 times while trying to finish it up. I haven't had a lot of happy thoughts lately so I decided to try and find one. Cuz I know there has to be at least one. And there is. Whenever I think of cancer I think of rapid weight loss and hair loss. I would like to say that my hair has faired pretty damn well through this whole ordeal. Here's' a selfie I took today to show you. :-)
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