Chemo Day

I meet with my oncologist every 3rd week and today was the day. Unfortunately I’m not ready to wean off the oxygen yet and need to stop taking oxygen breaks to give chemo more time to work as she says I’m causing stress on my heart. Darn. I guess I need to be scolded if I’m seen without my tank over the next 3 weeks. The good news is that she had an EKG done today and my heart rhythm is normal. The rate is just fast. Hopefully that will resolve as chemo has time to work and I get off the steroids which happens next week.

The best news is that my bloodwork looks good and tumor markers have decreased. Woot woot!!

Then it was off the the infusion center which was good and boring. I really am tolerating chemo well. I had some wonky stomach issues last week and am generally more tired, but nothing extreme.

I’m still hanging on to my hair, but there was more shedding this morning than usual so I don’t think I’ll have it much longer. And, that’s ok, as long as I’m here.

Chemo snacks have become very important. Yum yum!! Thanks to my Buffalo Mommies for taking good care of me.

Gamma Knife & Chemo

I am very glad that all I needed was one round of gamma knife as that was no fun!! Today was my rescheduled session after landing in the hospital when I was originally scheduled.  I was at Roswell at 7am to start with an MRI. I learned that hospital time starts early as I sat there for an hour before getting called back. Patience is not a virtue that I possess.

I finally got on the table for gamma knife around 11:30am. They started by placing a hot mask on my face that hardened to the point where I couldn’t move. This mask was more restrictive than the skull radiation mask.  Only my nose was sticking out through a hole. I couldn’t open my eyes or my mouth. It was a challenge to swallow, my mouth was watering and I really needed to clear my throat…yuck! At one point, I must have fallen asleep and I woke up in a complete panic that I was suffocating. From that point forward, I concentrated on breathing deeply through my nose to stay awake. That worked and I made it through the session, although I felt very squirmy and wanted to crawl out of my skin. I couldn’t see anything, but I could hear what sounded like a combination of a violin and the underbelly of an amusement park ride. Let’s not do that again.

This doesn’t look like the medieval torture device that is really is:

It was then on to chemo and that went smoothly. I am breathing better so I think this chemo is working on my lungs. When I see my oncologist next week, my number one question is how to wean off the oxygen. I think it is time which is exciting. In the meantime, I’m breaking the rules and allowing myself hour-long breaks during the day while I monitor my pulse ox. So far, so good!

Here I am today in my new sweatshirt from my Buffalo Mommy friends with zippers and snaps for my port. It is nice to be accessible and covered at the same time! Love it!

My hair is still sticking around. The next week should be interesting! 

Grateful

The amount of support I’m receiving is absolutely incredible. I wish there was a way for everyone to experience this amount of love without going through a serious health condition. It is good for the soul.

Family, friends, coworkers…the list goes on and on. I love all the messages, cards, words of encouragement, surprise visits, food deliveries, prayers… it is truly incredible and gets me all emotional thinking about the network of support we have. Every single effort is appreciated and is making this family stronger.

Today was Mothers Day and it was exactly what I needed. A day of nothing with Dan and the boys full of excellent food. I discovered that pizza tastes good loaded with sausage and mushrooms. And, a peanut butter parfait for dinner is a good choice with s’mores for dessert. Perfect!

Check out what Dan built after he removed the swing set .

This is going to be a great summer. With fire!!

Happy, happy.

Genetics & Chemo

It has been less than a week since I came home from the hospital and I’m slowly gaining my strength back. It is incredible how weak you become in a short period of time. My appetite is very strong and I’m back to be pre-hospital weight!! Unfortunately the dairy aversion is sticking around…but, I keep testing pizza just in case :)

Yesterday I heard back from the genetics department who confirmed that they tested 50 genes connected with breast cancer and I was negative on every one. What that means is that there is no genetic component, at least among the genes know today. Yay for my family!! Unfortunately that leaves me with questions about why. But, we won’t dwell on that. It is what it is and I’m going to focus on hitting it hard.

Dan and I headed down to Roswell this morning to meet with my oncologist. I was crabby because I knew they wanted to change me to a different type of chemo after my reaction last week. I want her first choice so I didn’t want to change. But, before I could express my concern, they explained that the other chemo is a cousin to what I had last week, is just as effective, doesn’t require pre-medication and takes less time to drop.  So why don’t they start with this chemo? It is more expensive so insurance won’t approve it without reason. I now have reason. Woot woot!

This afternoon I went to the infusion center and successfully received two kinds of chemo: Abraxane and Gemzar. The infusion itself was smooth. Thank goodness! The hair countdown is now on…two weeks until bald! And, a new wig :)

We received more pictures from Tyler’s Court of Honor that I cannot help but share. Treasures.

Home

After 9 days and 8 nights in the hospital, including 3 nights in the ICU, I am grateful to be home. There’s nothing quite like your own couch, blanket, bathroom…and being surrounded by your favorite people.

I’m amazed at how incredibly weak I am. Sara says it takes 3 days to recover for each day hospitalized and I believe her so I will take it seriously and stay slow. 

But, I’m also enjoying my minutes. I am here and part of this life. There is so much to be thankful for including all the family and friends who have offered support. It is humbling. And hard to say yes to help, but I’m working on it.

Mom made sauce this afternoon and is making my favorite cake tomorrow which will carry us through food wise for a while. I’m glad they are here.

The boys are good. Tyler still hides in his room and Ryan is obsessed with his activities which I enjoy seeing. He’s got another track meet tomorrow…maybe I can find a way to watch.

Dan came to see me daily. I’m so happy all he has to do now is walk into the living room. Home is a beautiful place to be.

Let’s not go back to the hospital. It is a very scary place. 

Partial Chemo

It is 2:30am and I’m restless. 

Unfortunately within 10 minutes of starting my first 60 minute chemo drip, I suffered a reaction and they had to abort. All of a sudden it was like I had 2 hot blankets thrown over me…one across my chest and the other across my face. It was rather scary, but they got it under control quickly.  This is the chemo I’ve had before and tolerated so I suspect there was something wrong with the accompanying saline solution or the rate of the drip. Whatever the cause, I did not receive that infusion.

The good news is that I did successfully receive the other infusion so I did receive treatment. I’ll focus on that.

Now I want to sleep, but can’t. I think I’ll dig into that blueberry muffin Dan brought me and find something dumb to watch.

Hospital Time

I feel like I’m in an alternate universe. It is now 8:15pm. I’ve been in the hospital for 7 nights and 8 days. And, they’re about to start pre-meds for my first round of chemo. Now. At night. I’ve been waiting for over 12 hours today. 

But, as long as it gets done, I’ll smile. 

Hopefully I’ll sleep through most of this with a heavy dose of Benadryl and anti nausea medication.

Time really doesn’t matter. As long as I get out tomorrow…

Shower 2!!

I must have been pretty pathetic yesterday when I was told I was staying because I got a 4:30am wake-up call this morning from my night nurse offering a shower before she goes off duty!

So I sit here, clean, in my own pajamas and am incredibly pleased. She even changed my sheets so I’m touching nothing dirty. It really is the simple things.

I hope these nurses know how much stuff like this matters. 

One more sleep. I hope.

Prisoner

I’m supposed to be home, but I’m not. I passed the walking/stair test. I passed the respiratory test. I was told I was on the ‘go home’ list. But, no, I’m still here.

It seems the step between IV steroids and pill form is too great so they’re afraid I would be struggling to breathe again as inflammation builds back up and end up right back here. That wouldn’t be good, but I wish they had figured that out earlier as this news was completely devastating to hear. Thank goodness Dan was here to catch me.

Now, they’re jumping through hoops to get my chemo started inpatient tomorrow as this treatment void is stressful and then another night in this room to continue to step down the steroids. 

My new hope is Wednesday and I’m trying not to let this hospital suck the life out of me before then. I need to find a good movie to stream tonight.

Dan was here for 4 hours this afternoon and my parents made it in so they all helped me get through today. 

Now I look forward to the hospital dinner special…Chicken Parmesan. I might be scared. Maybe tomorrow is the day I break down and ask for outside food to be snuck in!

We’re back to 2 more sleeps.