Dear friends and family,
It’s now been about a week since I was finally released from the hospital. The first few days home I was feeling very good, had good energy, etc. I think I pushed myself a bit too hard and wore myself out. I’m in the middle of a major immune low at this point. My white cells (and red cells) are very low. I’m taking all kinds of supplements to try to boost my immune system and to help my body fight off the cancer.
It’s hard to believe that at the end of February I was feeling very good. Over the next month, I would spend about 3 weeks in the hospital. For now, I’ve been cooped up in my bedroom, getting rest, and trying to do stretches, to strengthen my legs. I can get up and walk around (to the bathroom, shower, etc) but it’s exhausting, and I definitely need help getting out.
In the hospital, I had my belly drained several times, each time removing between 3 and 4 liters of fluid each time. Once I got home I was able to make it about a week (instead of 3 days) before needing to be drained again.
So, I’ve basically been in the hospital since March 6.
March 6-7 held in ER for observaton.
March 7-14 full Hospital Admit.
March 17-19 full Hospital Admit.
March 19 to current.
I was able to be released on the 14, in time for Opening Day for baseball. Mostly I felt OK, but was just tired. I ended up going back for a short stay. The doctors are really trying to get my electrolytes under control. The biggest is Calcium, which has been really high.
I’ve also had paracentesis several times.
March 18 removed 3.1L of fluid.
March 21 removed 4L of fluid.
March 25 removed 3.8L (think 2 2L bottles of soda.
March 30 removed 3.7L of fluid
So, a few of of the hardest things since being here are not getting enough/regular sleep. Eating keto, they do try but they don’t quite get it, and my 1.5 Liter fluid restriction. 1.5 Liters really isn’t much fluid. Thats only about 48 ounces of fluid over 24 hours. If I feel thirsty then I have to ration out my intake or eat fruit cups, because they don’t count as fluids (even though they have lots of sugar). Yogurts counts similarly.
I have been in and out of the hospital since about March 4. Everyone seems to have their own opinion as to what is going on. I was initially held for observation to help get my electrolytes balanced. Once that was accomplished I was sent home. The only trouble was that it didn’t last long. I was back at the ER later that day. The ER doc told me that they shouldn’t have let me go because of how wonky everything was. this time I was in for about a week, then sent home. I was home for a few days, saw my primary care doc and he decided I should be in the hospital.
He felt that the abdominal distention needed attention and I should have fluid drained. So that was another trip to the ER. I was in the hospital for a few days and then sent home. I was feeling terrible so I went back again and was admitted.
So at this point they are still investigating the fluid back up and have me on antibiotics.
The past week has been exhausting. I went to the ER on Friday, the 13th. They tested my electrolytes and discovered they were very low, so I got lots of IV fluids. They ended up discharging me in the morning, but by afternoon I was feeling yucky. I went back to the ER and they did more tests and decided to admit me (which they should have done on Friday).
Lots of lab tests and imaging later they realized the cancer in my liver spread a lot. So, I started the “heavy” chemo again. I haven’t been eating much over the past week, mostly due to feeling very bloated in the stomach/abdomen. I look and feel like I could be 7 months pregnant! But of course, this is not true. My energy has been really zapped lately, so I haven’t been walking much. I’m hoping that between the chemo and bowel treatments I’ll feel better soon.
So, its about 3:30am here in hospital land. Normally, at home I’d be sleeping or just getting back to sleep after having a few ounces of water.
I’ve been having lots of thoughts (who wouldn’t) about a longer than 1 or 2 night hospital stay. The biggest obstacle for me is that I’m on a 2L (64 ounce limit for water in 24 hours. Now, normally that is what we are supposed to aim for in everyday life. Sounds simple, right? Well, it’s certainly not simple here. 8 8oz ounce glasses over 24 hours. Let’s see you do it!
|Event||Meal||Ice||Ice||Meal|| SubT |
|Amt||8oz|| 4oz ||4oz||8oz||24oz|
|Event|| Ice || Ice || Meds || || SubT ||Total|
|Amt||4oz|| 4oz || 3oz ||11oz||35oz|
| Time ||7p||8||9||10||11||12a|
| Event || Meal || Med || Ice || SubT||Total |
| Amt || 8oz || 3oz || 4oz|| 15oz || |
|Event|| Snack || Ice || Ice || Ice || SubT || Total |
|Amt||8oz|| 4oz ||4oz|| 4oz || 20oz ||35oz|
OK, So….hospital bed not so comfortable. If you are going to be in a hospital for more than 2 nights then ask for the waffle-top mattress pad. Its very comfy-cozy, and worth having.
Walls/decoration severely lacking. Peds does a much better job on that. They need to get some nice decorations for the halls and rooms, spice things up a bit. Maybe some nice stickers on the walls (ocean, books, fields, jungle, flowers, things like that).
Hosptial gown/pajamas … One size does not fit most. I had to ask for large size Peds gown/pants. Which, while the shirt is cuter (perfect for little kids) the gowns are bland, one color things. One thing they have going for them is that they are very soft.
Well, that’s it for now. More thoughts, and stuff, to come later.
I know that its been a while since I’ve written an update. I have some energy still, but I do feel tired too. Currently, most of my electrolytes have been improving, but my phosphorus still seems to be low (they are not sure why). I’ve been put on fluid restrictions for 24 hours a day. This means that over 24 hours I can have no more than 2 liters of ingested fluids (including medicines). This really sucks because I’d really like to have Sugar Free Tea from Starbucks (but I could easily drink 12-16 ounces of it in under an hour. 2 liters is the equivalent of 64 ounces of water (your basic target of 8 8oz cups in a day). In the hospital when you don’t sleep much and the air is dry its really easy to want to drink more, especially when you are in a bed that is not nearly as comfortable as your one at home. Right now I have about 4 hours left in my Fluid Restriction day, and I’m already down to only a few teaspoons of fluid left. 🙁 They are mostly worried about my sodium levels, which are pretty close to normal now.
My heart rate is still up in the 110s and 120s, so they are temporarily keeping me on the cardiology floor, where they can hook me up to remote telemetry (same thing like at the ER when they put the 4-5 stickers on you and hook you up to a monitor on the wall.
So, the basic plan is for me to have a baseline heart echo and then start the same chemo I first used, which seemed pretty effective at the time. By then I should be up on the oncology floor, and hopefully the bed will be more comfortable. After 2 rounds of the chemo (AC treatment) I will be switched over the a cardio-protective version (it takes longer to start working, which is why they aren’t starting with it).
So the doctors think that maybe this is a late side-effect of the Carboplatin/Gemzar I was taking.
So starting around March 2nd or 3rd my abdomen started feeling tender. I chalked it up to constipation because I had been hatving trouble going. On March 4th I had my normal monthly labs drawn. I was called by my doctor saying my liver enzymes were extremely high (about 3x the normal high end). She wanted me to come in the next day to get IV fluids, hoping to bring my levels down. Well, that didn’t work and I got called that evening to go to the ER for more fluids. So, I went. They did lots of labs, and held me overnight for observation. They were fine with discharging me Saturday morning so I could see my kiddo’s Opening Day for baseball. They said my phosphorus was still crazy low, but my potassium had improved. But, they said if there was no improvement OR if I felt worse I should go back to the ER.
Well, this time at the ER they decided that with my liver being enlarged and electrolytes being outta wack they were going to admit me. The attending doctor told they probably should have just admitted me last night.
So, now I am out of the ER and hanging out in staging area that is for people who are waiting for an official room.
The latest labs show my electrolytes are still out of wack. I am still waiting to learn next steps, but I will likely be here for a few days until things can be figured out and a plan can be formed.
Had my liver biopsy today. Sedation was fairly light, but I was very relaxed, could have fallen asleep. I’m just a bit sore, but it’s not too bad at all, not enough to need any pain meds. I’m just cooling my heels here in recovery for about 1½ hours. At least I have my computer, so I can watch Netflix while I wait to get the OK to sit up. I also have to wait to drink anything. Since I normally only eat at supper time, waiting to eat isn’t a problem for me.
Today I had a port put in my chest to make it easier to get chemo.
The procedure went well, but I’m a bit sore. I was given Versed, Benedryl, and Fentynol. I didn’t test before my appointment, but did afterwards in the car. At 4:45pm my BG was 79 and BK was 1.1.
Today is the day before chemo. I’m planning on fasting until supper tomorrow (chemo day). That will be about 48 hours of fasting, and it’s supposed to be beneficial while getting chemo. I’m planning on talking BG and BK during this process, but it won’t necessarily be at regular intervals.
Surgery went well. I’ve been resting and taking it easy. I have 3 small incisions. I’m still sore, but that is always to be expected after surgery. Each day I’m doing better and I’m less tired. I haven’t really needed any pain meds, I’ve just taken some 800mg Ibuprophen – mostly as a precaution for when I was going to be out doing things. The only real complaint is that my shoulder is a bit sore, but that is normal with this type of procedure. Apparently the gas they use to fill the belly tends to end up in the shoulders as it slowly disperses.