Friday, June 26, 2020

Things I've learned in corona-quaratine

This is the longest we have been home without at least a weekend away to go to a swim meet, or see family, or go a trip over a school break. Luckily, my family makes me laugh and I not only love them but I've realized I really like hanging out with them (and still do after several months of stepped up togetherness!).

I've also been surprised by some of the random things I've learned over the last few months at home.
  • Like most people I learned to love, and then hate, Zoom.
  • I downloaded lots of apps and started ordering online and picking up at places like Target. Those services are amazing and I may never step inside a big box store again and can't believe I'd never tried it before. Ditto on grocery delivery.
  • We did a dog DNA test on our little white dog, Lilly, and found out she is mostly Bichon Frise but also has a little wolf in her (still working to figure out if all dogs results come back this way or if this explains her personality!).
  • I had never heard about dogs needing to have their "anal glands" expressed and had no idea our dog groomers over the last 10 years had been providing this vital service to our dog and us. If you are like us and had not heard of this google it and you will see why I am even more thankful for our dog groomer!!
  • I can't twerk no matter how hard I try - and I have been trying to learn!! 
  • Even though chemo is a bit of masochistic act I've become increasingly confident that I can do it (again) and am a third of the way through treatment. 
  • I've been surprised by people in their capacity for both hate and violence, and random acts of kindness and compassion. Hoping the world tilts every increasingly towards the later...
I have not figured out how to predict what the side effects will be from these treatments. They continue to be a different mix each time. I am sleeping so much this time. Not sure if it is from lower hemoglobin or the chemo meds over time, but I can literally barely make it to 7:30 pm before I go to sleep for the next 12 hours and that is with an afternoon nap. 

Had a bit of a surprise Monday when there was a mix up in the pharmacy and they mixed my penostatin with something (was not told what) and they did not have another dose so I had to come back on Tuesday. I was glad they caught the issues before it came up to the infusion room and I felt bad for whoever had made the mistake. Each dose costs about $7,000 and I am the only one getting that med so they did not have another dose on hand. So I got to have IVs put in two days in a row, get all the premeds and spent more time at the Cancer Care but otherwise not too eventful of a week. We are all settling into the routine of me being a sleeping lump week one and slowly coming back to consciousness week 2 before we do it all again.

Saturday, June 13, 2020

My Nemesis

It's stairs. Just the normal kind you find in your house. They don't have to be steep or long - just stairs.

After every infusion I feel exhausted. I struggle to catch my breath when I walk from the bed to the bathroom but the worst is stairs. Every day that goes by gets a little better but I have not gotten to the point I can carry a laundry basket up (or down) the stairs without my heart rate going up to the "too high" level. My doctor says this is a chemo side effects. It stinks because I spent the two months before starting chemo working out with Katt and spending at least 45 minutes day on the elliptical so ironically was in the best stair shape I'd been in for a long while. Now I have to sit down or lay down when I go from the first floor to the second to catch my breath. It gets better with time before the next round but does not go away.

Last week Katt saw on instagram that the Leukemia and Lymphoma Society (LLS) was doing a virtual stair climb fundraiser. She has never done any fundraising but given I recently restarted treatment and stairs are hard for me she wanted to do something that she can do help. Today she is walking up and and down our stairs 49 times to climb over 1762 steps. I am really proud of her for doing this. Thank you to family and friends that have donated to support Katt! The link is below and there is still time to contribute. I know there are a ton of worthy causes right now to support so really sincerely appreciate everyone giving to LLS.

I still have some headaches and nausea but feel like I am coming out of the worst of the chemo symptoms a bit earlier than the last couple of cycles. I ran fevers for more days after treatment this time which was not fun. It seems like the same symptoms but the combination and length have been a bit different every time.

They gave me extra steroids before my last treatment and I did not have any reactions which was good. Some of my counts were better which was also a good sign that the chemo is working. I just wish we could fast forward and get through this. Looking forward to feeling better next week before infusion #4.

Saturday, June 6, 2020

Everything makes me sick....

The nausea seemed to stick around a lot longer this time. It wasn't until middle of this week that I finally woke up and the chemo nausea had subsided and was just left sick about everything going on in the US right now...

I am sickened by the systemic racism in our country.

I am sickened by the widespread police brutality that keeps getting captured on video.

I am sickened by people encouraging violence against fellow humans.

I feel like I am living in a dystopian novel that I want to put down, never read again and write a scathing review of online. I never thought I would live in a time where peaceful protesters and journalists would be violently assaulted by police in the United States of America. I thought that the times of white men chasing black men and shooting them in the street with impunity had long ago been left behind in this country. Acts of violence and murder at the hands of police disproportionately against black Americans are unacceptable, and we have to figure out how to do better as a country.

I am convinced there is much more we all have in common than our differences. Everyone is someone's child and we all have families we care about and want to provide for.

I head back to have my third round of chemo on Monday. I know I'll feel like crap next week for more reason than one but hope that meaningful change comes soon to not only start a new chapter but a whole new, much better, book for our country.