Home – Part 1

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.

Facing The Whirlwind

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.

Spaghetti Bowl Thoughts

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!

EventMealIceIceMeal SubT
Amt8oz 4oz 4oz8oz24oz
Event Ice Ice Meds SubT Total
Amt4oz 4oz 3oz 11oz35oz
Time 7p89101112a
Event Meal Med Ice SubTTotal
Amt 8oz 3oz 4oz 15oz
Event Snack Ice Ice Ice SubT Total
Amt8oz 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.

Health Update 3/10/2020

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.

A long few days – update

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.

Updates of Lab Results

I realized that its been a while since I posted a chart. Starting on the 28th I began taking a 1/2 tablet of Metformin in the mornings, on an empty stomach, in an attempt to control my large rises in glucose after waking. And yes, my oncologist gave her OK for it.

Weekly Average of Glucose for February
Results for last week of February
A look at my labs. HbA1C is only taken every 3 months, and BHB was added recently.
Glucose is measured on the right axis, everything else on the left axis.

My goal is to get my insulin levels back down to pre-Piqray levels. I also want glucose to be under 90, as a fasting lab result.

Week 5 on Piqray

After consulting with my oncology NP, who also consulted with my oncologist, I decided to try taking Metformin, to see if it would positively affect my glucose (and insulin) levels. I can say that it did have a positive effect on my glucose. There was pretty much an immediate improvement! I am looking forward to getting the results of my blood tests for this week. I’m quite happy to see average levels of under 100.

Mid-week, Week 2 on Piqray

Glucose seems to be doing relatively well. Today I saw a peak of under 105 and a low of about 70. That’s pretty good compared to a week ago. I’m thinking of asking for another fasting insulin test, just to see if its still high. I’m wonding if (especially if its still high) that’s what’s dropping my ketones. I’m having trouble getting them above 0.6 at 24 hours fasted. I am thinking of doing a 48-hour fast (with eating some pepperoni and cream cheese at 24 hours – since I have to have some food with my meds) to see if I can kick things into gear again. I’d love to drop my peak glucose about 20 points, and the lower end around 10. My “ideal” range used to be under 100, with under 90 being common. I’d sure like to get back to that. I’m not really stressing on the low ketones. Maybe I’ll move taking the supplements from in the morning and at night to morning and afternoon, and see if that makes a difference. They are kinda expensive, so I want to make a bottle last as close to a month as I can.

Lab Results (3m comparison)

So, I just got some lab work done. I’ve got a series of labs I have run every 3 months. It gives me a good idea of what I’m doing and how the different systems in my body are functioning.

The low A1C is good! Doc isn’t worried about the cholesterol total. He did say that my HDL went up (“that’s good”). The fasting insulin being up isn’t good, but our guess is that it’s an artifact of taking Piqray. Both cholesterol ratios look good!

JAN 12, 2020OCT 8, 2019July 18, 2019
Fasting Insulin25.45.22.4
Estimated Glucose779488
Cholesterol 225186198
HDL Cholesterol 1047478
LDL Cholesterol Calculation 10683110
Total Cholesterol: HDL Ratio
Triglyceride 7414650
Triglyceride: HDL Ratio0.711.970.64