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!

Time7a89101112p
EventMealIceIceMeal SubT
Amt8oz 4oz 4oz8oz24oz
Time1p2p3p4p5p6p
Event Ice Ice Meds SubT Total
Amt4oz 4oz 3oz 11oz35oz
Time 7p89101112a
Event Meal Med Ice SubTTotal
Amt 8oz 3oz 4oz 15oz
Time1a23456a
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.

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.

Thoughts on Medication

Have you ever been prescribed something for a medical condition or symptoms and then been given even more medication? With chemo this is pretty common.

Something I’ve noticed is that, in general, medications have so many side-effects that we ended up taking other medications just to alleviate them. For example, nausea and vomiting is fairly common for people on chemo, so medication to treat it is often given. The Carboplatin I take is fairly known for it, so anti-nausea and anti-emetic (anti-vomitting) meds are often given.

The first cycle I was given compazine. This med had some fairly nasty side-effects. It’s no wonder that many people on chemo feel terrible. I talked to one of my nurses about it when I said I didn’t want to take it. She said that the feelings I had: unable to think clearly, sluggish thoughts, trouble forming words, being tired, was fairly common for people taking compazine.

Honestly, I felt so much better when only taking Zofran as an anti-nausea med. It’s main side-effect is constipation, and that can be easily remedied with…water! Yay for not needing another med to treat side-effects.

It’s worth reading the full list of side-effects for any medication you take. Sometimes there are alternatives, sometimes there aren’t. But be medication wise. Know your meds, what they should do, what they shouldn’t do, and as always, consult your doctor if you have concerns.