The Next Journey

Hello Keto Cancer Mom readers. I am Jacob4Jesus.

Many of you know me from The Ketogenic Forums. You may have seen me write about my wife with cancer. What you likely don’t know is that my wife is Keto Cancer Mom.

I am posting here now to tell you that as of about 6pm last Monday my beloved wife took her last labored breath in her sleep and passed to be home with her Lord.

Please watch this special video message that I have recorded for those who care about her. It is about a half-hour long.

I would like to continue posting to this site about my journey, now as a widdowed father of four.

Small Update

Today I had another paracentesis. I REALLY should have done 5 days, instead of 7. By day 6 I was miserable. My belly was so full it was next to impossible to even take my meds, and I even threw up some of my medications.

Anyway, today they drained 6L, that’s just about 1.5 gallons. 1 liter of fluid (water) weighs about 1 kilogram (2.2 pounds). I was carrying around 13 extra pounds!

I am working on lowering my glucose and increasing my fats. It should be a lot easier now that my belly isn’t stuffed with un-necessary fluids.

Home – Part 2

Around the 8th I got a blood transfusion because my hematocrit and hemoglobin were so low. I needed 2 units of blood, just to help bring things back up out of the danger zone. The transfusion took 5 hours, about 2 hours for each unit of blood. I was tired that day and the day after, but after that, I felt much better. I’m still tired most days, and going out for appointments wipes me out.

I had another paracentesis today, had about 3.6 L drained from over the last week. I am planning on going to a hotel with my husband for a few days. What I really feel like I really need is a good soak in a hot tub or Jacuzzi. I have just have a need float in water and relax.

A friend of mine has talked about “Spoon Theory”. Have you heard of it?
Its a theory about how much time or energy a person with limited energy reserves can portion their day, based on what they think they can accomplish.

I’ve had days where it can take me 5 minutes to get up to use the restroom, starting from the thought of “I need to use the restroom”.

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.

Another Update

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.

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.

Home at Last

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.

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.

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.