Quick update....Had bloodwork and saw my oncologist this past week. New chemo is working on cancer to prevent progression, however, it is literally pushing my liver to its limit. My liver enzymes are at a critically high level. Drugs are metabolized and changed into their active form that works in our bodies by the liver. So the liver is quite vital if you need to take ANY medicine let alone chemo. Unfortunately, I have to stop taking my chemo for a week to let my liver relax, then take my remaining chemo pills every other day, followed by taking the same medication at half the dose. Weekly bloodwork and scans likely to follow as well. Not the worst news and not the best news. Disappointing, I think is a fair statement. I also can’t take any other meds either - so no Zyrtec as I see pollen on my car or Advil when I get a headache and DEFINITELY no Quarantine Wine!!! In the meantime, we are staying safe and sound at home. Glad to have such amazing and funny kids with a supportive husband to have fun with and oodley doodley dogs to cuddle with. Thank you for continuing to be a part of our cancer trip. (And Remember, I’m not on FB these days, so I don’t see your comments). Much love to you and yours......STAY HOME!!!
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It has been an interesting time while we all adjust to dealing with this pandemic virus, isn’t it? I’ve been off of FB for over a week now and that has really been the best decision for me so far - it was just too darned stressful seeing people that I know flaunting the reality of WHY we are to STAY AT HOME. “Safe Playdates” are not safe and never were during this period. Standing in grocery store lines is not safe. Hanging out with “safe” friends is not safe. Your home isn’t a safe and welcome haven for other kids. Hanging out at bars and restaurants is not smart. Everyone could be spreading it and picking it up from THE AIR from someone who went by 30 minutes ago. So, yeah, if it isn’t a breezy day, your neighbor that you’re walking behind on the sidewalk, just gave it to you and you will give it to your family who will then keep passing it around. Blah Blah Blah - infuriating! And I was getting so darned angry seeing how many people were sharing these things. Why get so angry about it? Because I’m at risk, my child is at risk, my husband is at risk, my parents are at risk of DYING. And just dying, dying ALONE drowning in own own body surrounded by air BECAUSE PEOPLE WON’T STAY HOME! So, when we DO get this, because we all will, I would like to there to be supplies and a bed to give us the opportunity to live. I would also like this virus to move on so that we can all get back to life and look back at this time with lessons and gratitude in our hearts. Okay, it seems I found my soap box and didn’t intend to - I will put it away now.
Soooo, being off of FB has allowed me to breathe and given my mind some wonderful space to look around and appreciate so very much. I am so grateful to have a family that truly enjoys being with one another - yes, even my kiddos are good together; they’ve never been ones to fight. I am grateful for games and movie access. I am grateful for the daily joy and silliness from my kids. I am grateful for happy and spoiled dogs, Dyson & Roux. I am grateful for a week of gorgeous weather to sit on either porch and just enjoy the fresh air. I am grateful for access to grocery delivery and Amazon. I’m grateful that because of raising pups, we have lots of sanitizer and cleansers. I am grateful to not have puppies again until September. I am grateful that I worked for an amazing company that has given me access to a fantastic long term disability plan that keeps money in the bank for those grocery deliveries. I am soooo grateful that timing worked out so that I started my oral chemo regimen just before quarantining ourselves so that I don’t have to go to the cancer center 3x a week right now. I am grateful for a comfortable home to be crazy busy in while we finish the final touches on our home to sell so we can move when this craziness is over. I am so grateful for an amazing school that had plans in place and started full day lessons/videos/online checkins with their teachers and classmates right away last week - thank you so much O’hara! I am even more grateful that Shawn will not be doing is 12 hour shift IP in the Emergency Department at the hospital with this pandemic and that for his last quarter, he will have his classes online and be able to prep for his licensing exam once it is safe to take it. I’m hoping you can all look around and find those moments to enjoy.
What is going on with cancer stuff? Well, with my tumor markers jumping weekly the way that they were, we did not take any break at all and I started the maximum dose of Afinitor on the 10th. Overall, I feel so much better than I did on Abraxane. Until a couple of days ago. The medicine causes my saliva to be acidic. I do use a steroid mouthwash 4x/day, but it wasn’t enough it would seem. I also brush my teeth with a baking soda toothpaste as well as rinse my mouth before and after eating with a baking soda solution to help neutralize my mouth. The end of my tongue is inflamed and owie which makes talking and eating a bummer. The inside of my lips aren’t perfectly happy either. Not quite the diet plan I was hoping for, needless to say. So, for the moment, I am trying to eat soft things like cream of wheat or tuna or eggs. Nothing too hot or cold or my taste buds get angry at me. I’m sure it will get better eventually. The steroid mouthwash makes it harder to sleep at night but I’m fine. Really. I do have to go and get my blood drawn from my port at the cancer center next week to see if the markers are going down and that my immune system is holding up. I did call to see if the follow up appt to talk about those results could be done remotely over the phone, but no - which is annoying, but I will just not breathe when I’m there. That’s sure to work, right?! So please pray that Afinitor is working wonders for some regression. It is the 4th treatment regimen for me in 8 months. I need this to work for a long time, much longer than the average 7 months, okay?!
Still looking forward to our late summer camping trip making memories with each other. Seriously soooo excited for that! So please just stay home and let our amazing health care workers do their jobs so they can be safe when they come home to their own families. Then we can all get back to life in a few months. Be well. Find joy. And laugh with me knowing that everyone is going to have the most organized closets and taken care of yards we’ve ever seen when this is all over! LOL!!
Big Far Away Air Hugs!!