Chemo Round 2

Today I get a room with a bed. Last time it was a cubicle with a chair. I actually liked the chair better. I don't want to sleep so I'm just sitting in a regular chair for infusion. I like being able to look outside. In here it's like I'm in a hospital room. 

I was feeing sick last night and this morning, but they think it's anticipatory nausea. Next time I'll take meds for it. All of my labs looked perfect. They adjusted my meds a bit, adding one that's supposed to be a miracle worker for nausea. Oh I hope Zyprexa works!!

http://www.medpagetoday.com/HematologyOncology/Chemotherapy/32735

I'm in the middle of the infusion right now. Still not feeling good so they are getting me even more anti-nausea meds. Let's all cross our fingers that this round goes better than the first!

 

Chemo Tomorrow. Hope I'm Ready.

I'm not feeling so well tonight. Maybe it's my body predicting what's going to happen tomorrow. Or maybe I'm actually sick! That wouldn't be good. Everyone in the house was sick last time!

I know I keep talking about hair, but I'm SO ready to shave it. But I just don't dare! It is falling out like crazy!! I mean, it's really thin on the sides. But for some reason the top isn't as thin so I can get away with it. It's kind of like a combover but the top is covering the sides. 

Here's the frustration. I'm sick of being covered in hair! I'm sick of cleaning up hair! I'm sick of having hair in my food and on my pillow and all over the floor. At what point do you just say ENOUGH! It still looks ok, for today. But is that really worth the mess? I'm feeling that it's not. Tomorrow may be the big "head shave day"! We'll see how brave I am.

Day 17

I just carefully combed out my hair after my shower. I lost an equal amount in the shower. I wonder how many days I've got before I'll have to get out the hair clippers.

My scalp feels dry and itchy. I guess that's a sign that it's done with hair. I really need to sign up for the Look Good...Feel Better class soon. "Sponsored by the American Cancer Society, this class teaches female cancer patients beauty techniques to manage side effects of treatment such as hair loss. Participants receive a free cosmetics kit." And I heard it's like $100 in free make up! They teach you how to tie scarves, etc. I'm seriously going to this. I hope I'm not sick when the next one is offered.

Day 15

I've read in several places that hair loss starts around days 14-16. Today is day 15, and they were right! It was hard to shower, dress, or do my hair because hair was just falling out! You can't tell by looking at it, but if I run my hands through I'll end up with hair in my hands. Here we go.

Longest Wait Ever!

Oh, this is kind of a vent and kind of an update. My doctor, Dr. Ward, is out of town this week. So another doctor was covering for him. I had an appointment with her at 11:40. But by the time she actually got to the room it was 2:00!! Are you serious! And I know that she had two other patients waiting that long as well. Just regular appointments. Apparently the patient two ahead of me took an extremely long time. Why couldn't the doctor just send in a resident or fellow to see how we were doing? That's what ended up happening in the end anyway, after I had my clinical trail coordinator (that had to sit forever waiting with me) track someone down because I needed to leave. Her fellow spent about five-ten minutes with me but I couldn't leave until she technically saw me. She came in for literally less than two minutes, no apology for wait time either. What a gigantic waste of my day.

No really. When she got to be 30 mins behind, couldn't she have sent her fellow in at that time just to do the initial exam? When he found out that it would only take 2 mins, couldn't she have found a way to step into the room, say hello, collect her pay check, and then go back to the patient with the big problem?? Blah.

In the end, they gave me a prescription for a medication that is supposed to be very effective for nausea. Like, they said they've never seen anyone still sick after they've taken it. Problem, because there's always a problem, it isn't FDA approved for treating nausea. So a lot of the time insurance won't cover it for this use. And of course my insurance is one that is having a problem. Hopefully we straighten it out because it would be very nice not to be so sick.

Next, they are setting up an order for IV fluids at an office in Provo. The order will be for every other day if needed. They are hoping that with the new meds, I won't need it. But if insurance won't cover the meds, I think it's like $250 out of pocket! If there are enough pills to get me through the rest of my chemo, maybe it would be worth it. 

And by the way, the fellow set up the new meds and IV fluids. The doctor stepped in, basically said "sounds good", and that was it! 

Also, MY CHEMO IS PUSHED BACK AGAIN! It had been moved to this Friday, but it is now going to be next Tuesday. I'm so glad! It will give me a chance to really be ok before starting again. I realize that this inconveniences some of my helpers. I'm sorry! They moved it to Tuesday in order to coordinate my appointments. They are trying to get as many appts in on one day as possible. If I went this Friday, it would mean continuing to have doctor appts one day and then infusion another day. And that would mean more trips to the U and more need for babysitters. Oh and more gas money. So hopefully my helpers will forgive me one last time as I have to reschedule babysitters and meals again. Sorry! I love you all!!

Now I'll try to enjoy my New Year sickness free.

Let It Go 🎤

Hair. It's going to go. I've been trying to decide when and what I should do.  I have a sweet friend that found a way for me to have my own hair made into hair pieces. I was leaning toward that for a while. But I've heard that when your hair grows back in, it's a different color and texture. Usually darker (yay!) and curly (maybe not yay!).

My hair was long and didn't want to waste it. So I decided on Locks of Love. These cute little kids can wear it. Fantastic Sam's will give you a free haircut and ship it in for you! So that's what I did. Plus, the girl that did my hair was newer and needed practice with an A line cut. I told her to go for it. If she screwed it up, oh well. It'll probably be falling out by this time next week. She did a good job though. Even if it took forever. 😉

Chemo Hates Me.

I can't believe I was conscious enough to post something last Sunday. I read that I hoped I'd pull out of it soon. Well, I didn't. Not even close. 

Pre-chemo the doctors and nurses try to be so positive and say how there are many people that have little to no effects from chemo. People work full time and are fine. Of course, there's a spectrum. Unfortunately for me, I'm on the other end of that spectrum. These have been some of the worst days of my life. So nauseous. So tired. Then all of the other side effects, I'll spare you. Here I am on day 11 and I STILL feel sick!! Although I did make it to the first hour of church today.

I'm terrified to start this over again in 2 days. I think my family, especially my husband, is scared too. We can not do this again. I called and talked to a nurse  about other options. Luckily there are some. I'm hoping, at the very least, they'll send daily home healthcare nurses to give me IV fluids and anti-nausea meds!! The first round, I ended up at the ER to get 3 liters. And that wasn't fun at all. 

Honestly, I'm hoping they'll just hospitalize me for the first 3-4 days and run fluids constantly to get it flushed out of my system. IV, catheter, and wake me up days later when it's over please.

The ONLY thing that went my way is the Neulasta shot on day 2. That's a shot to help bring your white blood cell count back up. A lot of people get some level of bone pain associated with that. And then they need pain meds (which make me throw up) to deal with it. But I had NO bone pain!! Yay! Celebrate the little victories, right?

So, I'll try to enjoy the day I have left before starting over. I hope I get at least 1 day to feel normal.

I need to say thank you to my family. This has been an awful week. OH and a big part because I had a 2 yr old throwing up and couldn't deal with it. Poor baby, and poor grandparents. I had grandmas and grandpa taking care of it and cleaning it. Oh man. It was a bad, bad situation. Grandpa even caught the nasty bug (sorry dad). Thank goodness my husband will take over in these things.

I've had help from parents, sisters, sisters-in law, brother-in-law, aunts, friends, neighbors. Seriously. They have been organizing and bringing meals and watching kids and cleaning. And all of the texts and messages and gifts and people checking on me. I definitely know I'm not alone through this beast.