Well, I'm still in the hospital. In fact, things have taken a turn for the worse over the weekend. I've explained the series of unfortunate events so many times to every doctor in the hospital that I should be able to get this out without any problems. But this is going to be a long post. It's been a busy three days.
After very optimistically preparing that I would be out of here today (Monday) and being pumped to go home, on Sat afternoon, I walked from the chair to the bed and felt like I was going to pass out and vomit. I was given some IV Gravol which knocked me out for a good three hours but made me feel better when I woke up. I devoured some pasta and then went to the washroom. That's when the blood started.
The first time, I called in the nurse and she determined it wasn't enough to panic but because it was me, she called the on-call doctor to keep her informed. I still felt relatively okay until I went to the washroom about 45 minutes later and pooped out all the blood. Everyone panicked. The on-call doctor came in to the hospital immediately (same one that had to come in last weekend for my fever). The GI and hematology teams were also summoned and came in for a consult. I kept pooping blood and the doctors kept consulting. When I say pooping blood, I don't mean some streaks of blood in my stool, it's just a mass of bloody clots. It's disgusting looking but all the nurses need to see it and the GI team want a description of it all the time. Hospitals = talking about poop.
Around 11pm, I was moved to the IMCU (intermediate care unit) as GI wanted to do a stomach scope first thing Sunday morning and couldn't do it on the general admittance floor. They also wanted to keep a closer eye on me in case I started to decline more. Isaiah had to come back to the hospital to pack up and take back all the stuff I had accumulated over the past month. Since I have no fridge in the IMCU, our friend's house now looks like a mini hospital room with little cups of juice and slices of cheese.
My hemoglobin was unsurprisingly low which meant another transfusion but because they also needed to run stuff to try to slow down the bleeding, they decided to put in another IV. It took 4 nurses, one anesthesiologist, 10 needles, and until 2 am to get in the second IV. My veins weren't great to start and they've been destroyed with them drawing blood every day and trying for IV sites. It was terrible and painful. I can only stay so positive and find the humor in my shitty veins for so long. After about the 6th attempt, I was starting to lose my mind.
Sunday morning, the GI team did the stomach scope to investigate and found a mass of tissue that was oozing blood. They felt it was too dangerous to take a biopsy as it might've increased the bleeding so they left everything as it was. The scope was the worst experience I've had in a long time. I told them upfront that 1) I both need more sedation than they think as my body has become fairly resistant and 2) I have panic attacks around scopes so a bit extra would be advisable.
They didn't listen to me and I was awake and panicked the entire time and for a good half hour afterward. The nurse was ever so helpful with her repeatedly telling me to 'try to catch my breath' and 'calm down, it's okay.' I did not like that nurse. Especially when she tried to rub my back as comfort. I'm not big on the touching and having a random person rubbing my back made things much worse. Except I couldn't say anything as I had a tube down my throat. It was so awful that just thinking about needing another scope in a few weeks is causing me to start freaking out.
I did manage to sleep for a bit after the scope and for the rest of Sunday, I sat around waiting for doctors who never showed up. I saw a few residents but they weren't very helpful in telling me what was planned. Except that every single one of them said that I couldn't have any food and only sips of water. By Sunday night, having not eaten for 24 hours, I was a mess. I don't do well on no food and then add on some pooping blood and uncertainty about the future and I'm a wreck. I played a lot of Nintendo to distract myself.
The GI team consulted with general surgery late last night which meant I got a visit from a general surgery doctor at 4am who told me that the only thing general surgery could offer me was to remove my stomach. It was a great thing to hear at 4 am when I had little sleep and no food. I kept asking what reasonable things they could do as no one was taking out my stomach over a bleed. I mentioned clamping the area or a spray and he kept saying that wasn't his area, all he did was remove stomachs when it was worse case scenario.
I wanted to ask him why he even showed up if he wasn't going to be helpful but I was too busy picturing my stomach being taken out. He did follow it up that I wasn't anywhere near the point of needing their services and then left me to speculate at 4am what would need to happen for them to remove my stomach. Needless to say, I didn't get much sleep after that and may have called Isaiah while in the midst of a panic attack. Moving down to the IMCU has not been good for my brain.
[Advice to doctors: don't wake up patients at 4am to say that the only thing you can do is remove an organ when the person doesn't need that organ removed. Just save it for the morning, or don't show up. You aren't being helpful in any way. You are actually making things worse.]
I finally got some answers today as well as a new PICC line. No more poking for blood or IVs! The answers were not what I wanted but at least I know what's going on. The mass in my stomach is not an ulcer and is being classified as a 'mass of tissue.' Everyone (hematology, GI, respiratory, and floor doctors) thinks it's part of the PTLD even though it didn't show up on my CT or PET scan. They say that because it's upper GI, the scans have a harder time picking them up. The hematologist kept calling it a 'large cell lymphoma' instead of PTLD, I'm exactly sure how that is different but it's made them want to start treatment tomorrow or Wednesday.
The plan: tomorrow I'll be moved to the horrid VG hospital (horrid only because of the actual building, I'm sure the staff are fine) to the hematology wing where they'll go over all the treatment stuff and I'll sign a million forms saying I understand the side effects. Because of this new mass and bleeding, they've decided they need to be more aggressive so I'll be on full blown chemo as well as the Rituximab. I'll have the first dose tomorrow or Wednesday and then it'll be once every three weeks for a period of time (the dr didn't say). The rest of the treatments should be done as an outpatient. They will just keep me admitted at the VG long enough for the bleeding to stop and everything to be stable.
So that's the latest. I know everyone wants to know how I'm feeling and I honestly have no idea. My feelings having been changing all the time. This second, I just want to start treatment to get this over with so I can go home and move on. I'm sure at 2am I'll be feeling much more hopeless as that seems to be my pattern. And then when I'm talking to someone, I'll be able to joke about the entire thing. My emotions are a bit all over the place. It's all very overwhelming and the fact that I'm just now allowed liquids is not helping my ability to cope. I really don't do well with no food. I'm told that I should be able to have solid foods tomorrow as long as the bleeding doesn't get worse. I'm ready to tackle a nurse for food so they better give me something soon.