Napi Horsemanship

5:30 AM

Good morning for me! My night nurse usually makes an appearance around this time to take blood draws and give me my heartburn medication, omeprazole. Sometimes I can go back to sleep but I usually don’t. I get more sleep at home with my five month old than I do in the hospital. The first night home always hits so good. If I could bottle the feeling I would be rich.

7:00 AM

Shift change, I get my new nurse for the day. They check in and write their name on the board. Short and simple. This is around the time I order breakfast too. My go to these days is scrambled eggs, cheese, mushroom, bacon bits, and onion on it. Tea is my go to in hospital, coffee seems to be a little more rough on my stomach when I’m getting my chemo. Greek yogurt is always on my breakfast menu as well. Usually food takes about an hour after you put in the order. I’m high tech as well and have an APP for ordering food, it also lets me see the lunch special.

My go to show in the morning for background noise is Friends, which usually comes on around this time. It’s a good, simple, go happy show that I can tune into and out of pretty easily.

9:00 AM

Want some pills for your breakfast? I get my six pills of steroids, prednisone, those pink nasty tasting ones. Then I also get my birth control, B-12, antiviral, antifungal, pepside, I think that’s about it… unless my labs come back low on potassium then I get some of those. Those ones are huge! I had one nurse try to make me swallow them whole. DONT EVER DO THAT! Ask to get them cut in half. I had a nurse dissolve them in water and that’s disgusting so don’t do that either. Get them cut in half, its the best way I promise. I always make sure to eat before I start taking my pills as well. I have learned to take them in stride. I start with my pink steroids then take a break. I pretty much alternate between taking some pills, then eating some food. I repeat until the pills are gone.

11:00 AM

Rounds are done daily by the oncology team on the floor for the day. Every time I’m admitted there’s new faces. It’s also a teaching hospital so I’m sure that is part of it as well.

After rounds I usually try to get a walk in. My goal is one walk a day around the floor but sometimes I can get two in a day.

1:00 PM

This is around the time I order lunch. They offer a lot of Indian food for lunch specials so I’ve got to try a lot of cool styles of food I have never had before. Their pizza is always a solid choice, and there’s a few others as well on my list as my go to’s that I know are tasty. I notice veggies and carbs are my friend in hospital. My tummy does get picky but thankfully no vomiting yet.

Also a shout out to my partner who brings himself and the girls to the hospital to visit me usually on the daily. They even get to spend the night sometimes. I can’t begin to explain to you what this does for me mentally. I would be such a mess if I didn’t have them and their support. I really do think it helps my chemo process go smoother when they’re around. Don’t even under estimate the power of mentality. It directly relates to the physical world you create around you, in my opinion.

I have found a few things that I really enjoy to keep me busy when I have time on my hands. I’ve taken to sewing the hospital adaptive clothing, I have a horse training book I’m reading, and my website/ blog has also helped a lot to keep my mind busy. I want to get my hands on some lego sets as well. I think that would have been something I would have really enjoyed from cycle one. Play dough is a solid option as well. I was going to steal my older kids Star Wars lego kit she got for Christmas but she’s enjoying Grandma time so I will wait for her to do it, because I’m a good mom and all (lol). Anything to do with keeping your hands busy seems to help tire me out when I don’t have it in me to get two walks in a day. Like I said, don’t under estimate the power of the mind.

7:00 PM

Shift change! I get my night nurse and by now and I’ve already ordered dinner and ate.

9:00 PM

Night meds and my Heparin tummy shot, which is a blood thinner. I get senna for my gut movements, my acyclovir that I do twice a day, and another little pink pill that I honestly am still learning what it is. Either a Pepcid or an anti fungal. I also get those steroid pills twice a day as well. Oddly enough my Heparin shot is the most painful shot I get. Hurts more than an IV poke and my port poke. I find it funny.

1:00 AM

I don’t know what happened this cycle but usually I gets my “Red Devil” bag changed around 9 pm or 10 but not this time around. They had to re-access my port on night two because the first nurse didn’t sticker it correctly and it wasn’t sterile. I believe that’s one of the things that pushed my bag change into the early hours of the morning. It works out that I don’t enjoy sleep these days I guess (insert extreme sarcasm).

Sleep is probably the most healing thing I have found for my body these days. It’s been hard for me to slow down and admit it but if I need to nap, I try to if I can. Considering the 5 month old baby and her demands.

That’s about it when it comes to a day in the life of EPOCH in hospital. Five o clock in the morning comes back around and I repeat the day over again. I’m usually in hospital from Sunday and I get out Friday. I am only allowed to walk the floor and I can’t leave the building or go outside. I only have two cycles left and hopefully I’ll be a lucky one and get a 20 year remission the first time around. I’m really betting on mentality here. What could it hurt? I really do have it easy when it comes to having cancer. I see others that have much more difficult cancers and find myself constantly grateful for my badass body putting in phenomenal work to keep us alive, for not only my family but for a full life I want to live.

Thank you for the time and support as always. I really don’t know how some families do cancer and bills. I’m very lucky that my job offered benefits or we wouldn’t be able to pay rent and other bills while I under go treatment. My biggest advice today I can give you is make sure you have insurance! I will continue to keep everyone updated on everything as we near the end of my six chemotherapy cycles.

Also that vile in the picture for the blog post is my SECOND vile of spinal fluid from, hopefully, my last lumbar puncture. This puncture came back negative for abnormal B Cells as well as the first one so it seems that there is no Central Nervous System involvement with my lymphoma. This is the best news we have gotten so far, and I don’t want to say too much more until my PET scan in September.