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. 

Post Chemo Days

Here's a quick update. I've pretty much spent the last 3 days asleep. Seriously. Like sleeping 22 hours a day. I've just kept in top of my anti-nausea meds and I think they just knock me out. Better to be asleep than over the toilet, right?!

I hope I pull out of this soon. But this is reality for now. My sweet husband is doing a great job of handling everything around here.

Chemo Day One

Getting chemo? Not so bad. Well, the second of the 2 chemo meds did cause a feeling of pressure in my head. I was feeling a little tired and foggy during that one. But overall I left Huntsman feeling ok. 

Then the drive home...rush hour. And rush hour from the U of U to Orem. Not good. And I progressively started to feel more tired and hot and sick. 

Here we are at 9:00 at night and I'm feeling the yuckiness come on. Still ok but maybe a little fluish feeling. It makes me worried about what tomorrow could have in store for me. All I know is that the very first thing I'm doing in the morning is taking more anti-nausea medicine!

Last Pre-Chemo Day

It's the last night before chemo. I have a few things on my mind. #1 Do I have everything at home prepared? #2 How am I really going to respond to the chemo? #3 Should I get the short haircut now or wait until after Christmas? #4 GRATITUDE for the support and service of others. 

For the last few weeks, I've felt like I needed to get everything in order before treatment started. It's been preparing for life as I know it to be over. With the help of others I've been able to get a lot done. A few more things tonight and that'll be as good as it gets.

I met with Dr. Ward today. He went over the chemo and side effects in a little more detail. He gave me 4 anti-nausea prescriptions and his nurse took me to see the chemo infusion lab.

Actually after my doctor appointment today I'm feeling like, or at least hoping that, I may not be as bad as I thought I might be. I guess that everyone has a very different reaction to chemo, but many people do okay. 

I found out exactly which chemotherapy drugs I will be given. Dose dense Adriamycin and Cytoxan for the first 4 doses (every other week) followed by Taxol for the last 12 weeks (once a week). Dose dense means that they will be giving the infusions closer together than they have in the past. They used to do it every 3 weeks but have found better prognosis doing it every 2 weeks. I guess that it will wear on me more as I get further into treatment. At least they have more medications to deal with side effects!

Hair. Oh that dreaded hair issue. I know I've said it before, but I swear it's the worst part of this whole thing! Isn't that terrible!! But think about being bald (unless you're a man that's already bald-sorry). For a woman, it's embarrassing. It's going to be horrifying when it goes. I wish I could be one of those self confident women that can rock the baldness, but I'm not. So first I'm going to do a short bob cut. And I bought black hair color today. A short black bob will be fun for a whole 2 weeks until it falls out. I just can't decide when to cut it. I was ready to cut it tonight, but didn't. Every single time I go to Huntsman, someone suggests that I get a short cut now. They tell me how much easier it will be when it falls out. I don't know.

Again, I have to say how incredibly thankful I am for my large support system. I've received calls, texts, cards, flowers, gifts, service galore, and just so many expressions of love and support. It really makes this easier. And it's a miracle how so much of this support has come at just the right time. It shows me that Heavenly Father really does know me and my needs and loves me. I'm thankful for people that have been His hands to help me and my family.

I'll get to watch Gavin's Christmas singing program in the morning and then I'll start my chemo at 2:00. Here's hoping in one of the lucky ones!!

PET Scan Results

Today was PET scan day. The last big diagnostic test that we needed before starting treatment. The PET scan is a full body scan to see if the cancer has spread to any other part of the body. Because we knew that at least a few lymph nodes had cancer in them, there was a chance it could have spread. 

The results? The cancer has NOT spread!! Yay!! Even the doctors seemed relieved. They said that I have stage 3a breast cancer, which is curable. Yay, again!! Although, that does means some aggressive treatment to get there.

What does stage 3a mean?

I'll still start my first round of chemo next week. My first 4 doses will be pretty bad, but they are every other week. That means I should be ok for Christmas! But they said to expect my hair to start falling out 1-2 weeks after starting chemo. Small price to pay to save my life, right?

The day after each chemo treatment I'll have to get a shot to boost my white blood cell count. But they said I really don't have to be overly worried about getting sick. I mean, please stay away if you are sick, but I don't need to live in a bubble.

I'm also participating in the "Berenice Trial". That's a clinical trial for Her2+ breast cancer patients. They want to see if a combo of Herceptin and Pertuzumab (antibody's that target Her2+ specifically) for a year is more beneficial than just 4 doses. Ya, I was also confused by the names and details. I also get to enjoy extra labs and heart tests to participate. But hopefully I come out with remarkable results! 

Now I'll enjoy my final week of being normal, relatively speaking.

First Chemo Infusion Scheduled

After waiting and wondering, I think things are set up. It was a little tricky scheduling around the doctor, clinical trial, and infusion openings, oh and kids Christmas concerts, but I have a chemo start date. My first chemo infusion will be Thursday, December 18th at 2:00. I won't know what kind of chemo exactly until after my PET scan, but at least I know when it will be starting.

I'm trying to decide if I should go to the chemo class that they have up there. I'm sure it would be very useful to hear the information, but that's one more drive up there! I have appointments Wednesday and Friday and this class is Thursday! Maybe they have a webinar recorded on their site...

PET Scan Scheduled

PET scan approval finally came through. I'll have the scan next Wed morning at 8:30 and then the appointment with Dr Ward, my oncologist, that day at 1:40.

The PET scan will be done, read, and results to Dr Ward by 1:40. Then he can give us the news and plan based on the scan results.

Heart Echo and Supportive Oncology

I had appointments at Huntsman today. First was an echocardiogram of my heart. Basically an ultrasound of my heart that also measured the electrical current. My heart looks great and healthy enough to pump all of the poisonous chemotherapy through my body. Yay! I guess. 

Then I made my first trip up to The Bistro on the 6th floor for lunch. Nice hospital food and a nice view.

Then on to my appointment with supportive oncology, AKA the psychiatrist. They gave me a packet with all of the resources available to support me throughout the process. It's amazing how many free programs and classes they offer! I wish I lived close enough to take advantage of more of them.  And the psychiatrist helped me switch to an anxiety medication that won't interact with my cancer medication. So that's good. 

I stopped at the financial office to check on the pre-authorization for my PET scan. Still not there. The insurance said within a few days. The financial office lady said she's seen them take as long as 2 weeks to 2 months!! I guess PET scans have a lot of paperwork and it's a process. Still, these are for people with cancer that can't start treatment without this test! Come on insurance people! Move your booty a little faster!