Getting ready for Desensitizing- Inpatient Chemo

    Tomorrow will be the big week for chemo, both the Carboplatin (the one I had an allergic reaction to) and Taxol. I had to take pre-medications starting Saturday morning. I am taking 20 mg of Decadron and 50 mg of over-the-counter Benadryl every 6 hours. Then every 8 hours, I am taking 300 mg of Tagamet. The Decadron is my steroids and a high dose of it. So even though I'm taking Benadryl, which usually knocks me out, I have not been sleeping at all. I am having to take medications during the night, 12 am then 2 am. I woke up a little late for my 2 pm dose but have been awake since 2:45 am. I have tried twice now to take a nap and no such luck.

Just to give you an idea, this was the handful of pills I had to take this morning.

Some are my regular medications and calcium gummies, and some are my pre-medications.

And yes, I do I have a pill box!

To recap what the game plan is for the next two days:
    We will go to Forsyth Medical Center (where I use to work and have had both of my surgeries) at 7:30. I will go to outpatient admitting and get a bed on the oncology floor on the 9th floor. Our PA told us to expect the infusion to start around 9 am. I had my labs drawn last week, so I don't have to wait for those. It just takes awhile to get to the room, admission paperwork, IV medications mixed, and my Port-A-Cath accessed.
    We will have just one nurse assigned to me so she will always be in the room. This will help for me to be closely monitored in case I have another allergic reaction. The goal of this is to "sneak" the Carbo into my system without my body noticing and having a reaction. It will be a small amount of Carbo to a lot of fluid.
    I will also get my Taxol in the hospital so I won't have to go back into outpatient chemo room for that. I will still get my regular IV pre-medications.

    I will do my best to keep everyone updated on the progress from tomorrow. Not sure if the IV Benadryl will knock me out or not. We shall see. We both would appreciate prayers to make sure I don't have another anaphylactic reaction. Also for Wil and I both to get sleep while spending the night in the hospital.

To Tampa and Back

We saw my oncology PA, Alison, on Tuesday to make sure my counts were high enough to travel safely. They were good but my exam showed that I'm still not fully healed yet. I was told that to fly, I needed to wear my compression socks, take an aspirin, and wear a mask. I took hospital grade Sani wipes and gloves so Susan (my boss) and I could sanitize our seats and everything we may touch on the plane.

Needless to say, we got a LOT of looks at the airport. I guess a lot of people are scared of Ebola. So when someone was staring a little too much, I would cough and say Ebola... Susan told me I should stop that :) I may freak someone out too much.

Susan and I had a crazy travel schedule, fly to Tampa on Wednesday at 2 pm and get there at 6:30 pm. We were able to go to dinner with a former employee at the Greensboro center. He was promoted and works at the corporate office now. Go Aaron! We had advanced injector training from 9-5:30 pm. We worked and trained all day. Then we left straight from the center to the airport. I didn't get back home until 12:30 am. Tired but learned a lot and had fun too!

 Flight 1: Greensboro to Atlanta

 

 

Flight 2: Atlanta to Tampa

 

Our awesome trainer, Katrina, and the whole gang!

 

Susan decided to doll up my masks for the flights home!

 

Flight 3: Tampa to Atlanta, as Marilyn Monroe

 

Flight 4: Atlanta to Tampa with Buckteeth, ready to be home!

 

 

The best part about this trip, was seeing some of the other state preceptors with teal bracelets on at breakfast. I saw that they said "Team Erin." I asked about it and was told that there is another provider that was just diagnosed with ovarian cancer in October. I'm not saying that I'm glad that she has cancer, just the opposite. I'm just glad that I may be able to reach out and help her. 

Everything you wanted to know about hair loss

Hair loss is one of the difficult parts about chemo for a lot women. I am blessed enough to have a hair dresser for a younger sister. This allows me to take control of my hair and turn it into something fun. I can tell when my hair is getting ready to start falling out. My scalp is tender and sore for a few days before it starts falling out in clumps. It feels like a dull headache and hurts to brush it. Cutting the hair shorter makes my scalp not hurt as much. It takes the weight of the hair down, which relieves headache somewhat. I like doing the hair cutting party as soon as I barely touch it, and I get handfuls of hair out. Since we did this last minute, my family got to watch via Facetime.

Wil had been growing his "protest beard" since before surgery. He was protesting cancer and was waiting until the hair cutting party to trim it into new and fun styles!

 

Here is our before picture. 

 

Facetime with my two of my sisters. We ran out of Apple products, so my baby sister, Anna, got to see pictures!

 

Lauren, my sister, walked us through how to cut my hair into a short Mohawk.

 

 

My sister-in-law, Holly, helping my niece Hailey take some chunks out. Every little girl loves cutting hair! Holly had to clarify that Hailey is only allowed to cut teal hair. So far, all of her own hair is still intact!

 

 

Our one and only nephew, Hunter, is so sweet!

 

Father-in-law, Ted, took a whack at it. His tongue was hanging out the whole time.

 

Time for Wil!

 

Brother-in-law, Doug and niece Daphne were able to enjoy the show too.

 

Lauren!

 

Lauren was Facetiming Mom too!

 

And the clippers come out

 

 

Everyone can see why I have the pink streak on my head now. Some think that I have a scratch but it just where a hot pink highlight was!

 

I'm all done! This is one of my favorite shirts, Wil got it for me for my birthday. Fits my attitude :)

 

Going from a beard....

 

To a fumanchu!

 

 

Yes, I even put little rubber bands in it! Wil had to shave it later into the full blown fumanchu. He had that for the race and put blue dye in it too.

 

This was a two step process. I wanted to keep my Mohawk for the Athena's Run. I made sure for that week that I had it, not to wash it much and not mess with it. Otherwise, it would just come right out. So the night after the run, it was just coming out, with a slight tug, you would have a handful of hair. I don't want you to think that we are always happy, this was really tough for me. Wil hit the nail on the head when he said that everything else with my hair had been on my terms. I dyed it when I wanted, I cut it into a Mohawk when I wanted, but it fell out when chemo wanted. I cried, more like wept, while Wil held me. So then Wil and I went out on the back porch after my family left, and we buzzed the rest of it off.  I hate the shedding process. For me, I wish it would just all jump ship at the same time. I don't like it looking patchy. With me getting weekly chemo, I think it has changed my hair this go around. I still have some hair, as you can tell from our weekly posts. We will see if I keep more of it this time!

 

 



 Before shaving the Mohawk. You can see how much fell out!

 

Wil's before picture.

After! (you can still see the pink stripe!)

 

Wil's cop-like mustache. He only kept this for one day. He shaved it all off and had a baby face for about a week until his beard grew back in. He has had some sort of facial hair since high school. It was fun to see how different he looked with different facial hair.

Chemo Round 2C: Getting the game plan

We have been diving deep into prayer for answers, wisdom, and discernment for our treatment. Well everyone, prayers were answered! Our choices were to stop the Carbo and not replace it with another chemo. We could continue the weekly Taxol but wasn't safe to add a different chemo because it would have issues with toxicity levels. The other option was to try the desensitizing in the hospital, once every 4 weeks. We would be admitted on a Monday and go home Tuesday. I would have oral pre-medications for 48 hours prior to being admitted, more steroids and Benadryl. I would get larger doses of the IV steroids and Benadryl prior to the chemo. Instead of the Carbo being infused over 30-60 minutes, it would infuse over 6 hours. I will be closely monitored, a 1:1, just me and our own nurse! If I start to have any sort of the same symptoms as before (itchy hands, shortness of breath, chest tightness, or flushing), the infusion would be stopped immediately. Dr. Skinner said that if I have another allergic reaction, we wouldn't try the desensitizing again and just continue with the weekly Taxol.

Drum roll please....

 

.......

 

.......

Wil and I decided to throw whatever we can at this cancer! Boom, desensitizing here we come! As Wil has said, we can do anything four times. Four nights in the hospital over the next four months, not bad at all. Completely doable!

 

 

Treatment went well today, just the Taxol. ANC (Absolute Neutrophil Count) is the main count that we look at when it comes to immunity levels. A neutrophil is a mature white blood cell, one that can fight off the "icky" stuff in your body. They prefer it to be above 1500 for treatment but it really needs to be above 1000, otherwise I get housebound. Today was 1200, but I was cleared for treatment. I will be travelling on a plane for an overnight trip next week for advanced injectable training, so I will get it rechecked next Tuesday. We will see our PA, Alison, for an exam and getting information about being admitted the following week. I fly on Wednesday with my awesome boss, Susan. I will have to wear my compression socks since I'm at higher risk for a clot and a mask to keep the germs away! That's all the news for now.

Thank you for all who read the blog, I was nervous about starting it. I felt like it was tooting my own horn too much but it is good therapy for me too. I like getting all of my feelings down but it is also an amazing way to update everyone at once. Since I have chemo brain, I forget who I have told what to and I don't want to leave anyone out of the loop. Thanks again!

Bad Cancer but Great Friends!

There are people that God brings into to your life for a specific reason and purpose. We met a couple during our first bout with cancer and chemo. If my counts would have not been too low one week for chemo, our paths may have never crossed. My white blood cell counts were too low to be able to get chemo on Monday and Tuesday. We had to get a shot and wait until Thursday for chemo, which is when Tracy Riazzi and her husband, Mike, got treated. She was diagnosed a few months before me  with the same cancer and was on the clinical trial drug too!

We have bonded very quickly and closely with this couple. They are an amazing, godly example for Wil and I. She is currently fighting for the 3rd time and is doing it with such grace. Her husband's love for her just exudes out of him. He always calls her his "beautiful smiling bride," which I absolutely love. Wil and I wanted to see Mike and Tracy when we were diagnosed with the recurrence. They had been down that road before and could relate to all of our feelings, fears, and anxieties. Tracy just held me while I cried how this wasn't fair and she just held me close and whispered she knew, which she really did know first hand. They both prayed with us and have supported us.

Without cancer, we would have never made these lifelong friends. I love this verse in Jeremiah 29:11, "For I know the plans I have for you, declared the Lord, plans for welfare and not for evil, to give you a future and a hope." I was able to see them during Tracy's treatment on Friday and then we all had dinner together on Saturday. We were out to celebrate their daughter, Brianna's, 21st birthday. We always have such an amazing time with them and we are blessed to have them in our lives!

The three bald amigos during Tracy's chemo

 

 

 Mike "Shot the Full Moon!" He ate 5 to win a shirt. It was a cracker, oyster, horseradish, jalapeno, extreme hot sauce, and pepper. He was a champ and barely sputtered!

 

He had a few coughs in there but made it!

 

 

The whole gang!

 

 

Wil and I are meeting the oncologist tomorrow before treatment. We will be finding out our options for chemo moving forward. Carbo (the chemo I get every 4 weeks and the one I am allergic to) either will be changed to another drug or I will get it over 24 hours. So please pray for guidance for the medical team and for us to make the right decision to kick this cancer once and for all! I will post again once my Benadryl induced haze wears off  :)



Chemo 2B: Eating out of house and home

This past week, I slept a lot since I was taking so much Benadryl. Usually, this would have been the week that my appetite would have struggled. This did NOT happen because of all the roids. These are the steroids that make you eat like you are getting ready for hibernation, not the kind that make you bulk up with muscles. I am not allowed to lift any weights yet since I am at a higher risk for a herniation since I have now had 2 major abdominal surgeries in 2 years. We are walking more, it helps circulate the chemo to my whole body. In 2 sessions, we walked for 50 minutes and for 1.72 miles today! Even though we are doing this, I gained a whopping 5.5 pounds in just a week. My poor husband, the roids have made my fuse very short and he has been very patient with me the whole time.

We were able to celebrate our 3rd year anniversary at our home. We still look back and love looking at our pictures from our years in this house. Our lives have drastically changed and I love seeing it captured in a photo.

A big shout out to the Major League Baseball Playoffs with the Giants! One of the reporters was wearing a Bow Tie for a Cause and it was for the Ovarian Cancer Research Fund. We were blown away to see this, especially in the month of October when it is breast cancer awareness month. Since some of you may not know our tie to the SF Giants. Wil's great uncle, Roger Craig, was the manager for them when he was a kid. So GO GIANTS!

 

http://bowtiecause.com/product/ocrf/

 

 

We didn't get to see the oncologist today, but will talk with her next week about chemo plans moving forward. Chemo went well today, no issues at all with the Taxol! (Carbo was the once that was the issue last week)

More ROIDS! Allergic reaction, round two

Tuesday started off as a great day. I slept pretty good that night and had an amazing morning at my women's bible study. I was feeling spunky (from the energy from all of the steroids I had IV on Monday) so I decided to go into work for the afternoon. Kaylee, one of my coworkers and friends, was chosen as the watch girl for me. She knew to call 911 if my face started getting really flushed, itching hands, and/or shortness of breath. Then she was going to call Wil. She texted me Monday night and said she was up for the challenge and she would "follow you like your shadow."

Well HUGE shout out to my buddy Kaylee. I did a couple of treatments then started to get a hot flash, not out of the norm for me right now. But then my hands started to tingle a little. I went ahead and called my oncologist, and Kaylee never left my side during this. They told us to go ahead and call 911 so they could start treating me en route to the hospital. Kaylee called 911 and Wil for me and got me an ice pack since the flushing was getting worse. Wil was there in record time and was shortly followed by EMS. They went ahead and put me on oxygen since my shortness of breath was getting worse. My vitals were all ok, oxygen was ok just increased respiration rate and blood pressure.

Wil said that before he met me, he had never been to the emergency room. So we broke that barrier when we were dating, I had a car accident then my younger sister did too. We broke it again when we were married when I had abdominal pain that led to finding my tumor. But until yesterday, he had never ridden in an ambulance. He got to be in the front seat while I was in the back being monitored. We had great EMS team, even though I can't remember their names! The tech taking care of me was really sweet and gave me 25 mg of Benadryl IV. When we arrived at Forsyth Medical Center ER (where I worked during nursing school), she said that she would be praying for me.

Here is upon arrival, before medications, not feeling too great:

I was taken to Red 12, which is the where the more critical patients go. I had two awesome nurses, one that remembered me from when I use to work there. I was hooked up to the monitor and stayed on oxygen. The ER doctor came to see me and I told him that my oncologist knew I was on my way. He called her and I got more IV steroids, Benadryl, and Pepcid. Dr. Skinner and Alison (my oncologist and PA) to see me in the emergency room. Dr. Skinner told me that if we wanted to see her that badly, we could have Skped. They wanted to do a CT-PA (scan of my pulmonary arteries) since I am at a higher risk for having a clot because of my abdominal surgery.

Here is after medications made me feel better:

 

 

Great news, NO BLOOD CLOTS! They think this was just a prolonged allergic reaction from the Carbo (chemo drug). This whole experience was very scary for both me and Wil. They told us Monday, that this reaction could be fatal. Nothing comforting about that word really. Wil told me today, he would rather see me in pain (which he absolutely hates) than be short of breath. I was sent home with 5 days of prednisone (oral steroids) and take 50 mg of Benadryl every 6 hours for 48 hours.

 

I have felt fine today. Wil and I are just exhausted. 6 hours in the emergency room and the whole experience takes a toll on you. Thanks to Kaylee for her action at work, my boss who didn't bat an eye when Wil called saying I would be out of work this week, Wil's parents who met us at the ER and brought my car there, Wil for staying by my side. Most of all, God who kept me safe during this scary time.