One week

It’s hard to believe how much has happened and how much we accomplished in such a short amount of time. 

Wednesday, February 15th, I was told it was time. I had fought a good fight, but I’m not the problem, the medical knowledge just isn’t there yet. I’ve had tumors related to the Leukemia growing in random places under my skin, but we have hope because there was still no cancer in my bones. Once it was back in the bones, it was just too aggressive. My counts were doubling every day, but we were going to try to control them, to give me the longest possible time here. 

I take these chemo pills that are keeping my white blood cells and cancer cells down, but it’s also making me need a lot of blood product transfusions.

February 15th…..I was told to get my affairs in order. I don’t have time to waste anymore, so I started planning a wedding to my soul mate. We picked the closest possible date to ensure that I’m still feeling well and able to really enjoy myself. 

So many people have come together for me, but I’m also absolutely not surprised. The generosity that’s been shown to us throughout this entire journey has been overwhelming. I don’t know if I would just survived as long as I have without the amazing support team I’ve had along the way. 

We received so many generous donations that I feel like I’m going to have the wedding of the decade. There’s literally nothing for me to worry about any more, and that makes me a very happy girl. Tonight, I had two of my friends come over and I basically went over everything with them, and they’re going to take care of the rest for me so that I can relax and enjoy the next few days. 

Especially since my NJ family and friends are going to by arriving in the next coming days and it’s very important for me to spend time with them. 

I’m going to keep fighting.

I’m going to keep fighting.

I did the Mylotarg. It was 3 doses. One every other day. I had no complications. Just generally being very fatigued.

I got to get out before Christmas. Chastity and Amanda had already left. My parents and Paul and I had our own little Christmas. We used one of the Christmas Trees on the floor of the Hope Lodge and placed our presents around them. I also had a special visitor. Cheyanna had driven up to see me Christmas Eve and stayed for Christmas day for presents and for dinner. Dinner was delicious as usual and provided by the Hope Lodge. One of the local churches brought us in some little presents with a nice blanket, and some candies.

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After Christmas was pretty uneventful. I had an appointment with my therapist. She asked me if I had three weeks to live (before we really know if the Mylotarg was working or not.) I told her I wanted to marry Paul, I wanted to be in my house, and I wanted to be with Yuna my doggie.

So we had a few questions concerning possibly getting married (I don’t want to leave him in a ton of debt) that she was going to look up for us. She also wrote a letter so Yuna could be an emotional support dog and I could take her with me to the Hope Lodge.

So after that, Paul and I began our search for engagement rings!

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After we found our rings, December 31st we were officially engaged!

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Before too long, I found myself back in the hospital with another infection. I was having a sore throat, this sore throat progressed until I couldn’t even swallow spit anymore. Everything was SO painful. Eventually I had to be on so much pain medication because of the pain my throat had caused that I was hallucinating. The issue I was experiencing this time was called Mucositis. I was getting all my nutrition from a white IV bag. I eventually got to the point where I could start swallowing a bit. I started to be able to swallow some pills and with that, I was released from the hospital and back to the Hope Lodge.

Here’s some information on it that should be easy to understand: https://en.wikipedia.org/wiki/Mucositis

I was still having a hard time eating, but it slowly got better and better. Finally we were going to need to decide what my next steps were going to be since my last treatment finally worked.

At first, I thought I was going to do a clinic trial of a cancer pill that I would take once a week or so. Then I found out that they misunderstood some of the qualifications for it, and I wasn’t qualified.

One thing I was qualified for was Ipilimumab. If you remember, we were going to do this a few months ago, before my cancer came back and I needed to do the chemo that failed.

Another NEW option, was a full match donor had shown up on the registry. A 50 year old woman from somewhere overseas.

We decided we’d start the Ippy and eventually look towards transplant. I also requested that they do a PET scan on me, because I was noticing lumps under my skin. They turned out to be from my Leukemia, but the Ippy had success with people who had tumors or cancer related masses.

January 25th, a Wednesday, I took my first dose of the Ippy. One of the large side effects is that flare my GVHD (Graft Vs Host Disease) and my goodness, the joint pain I had in my hips and knees was almost unbearable. It subsided a few days later in severity but I still have joint pain. Friday, I saw them for a follow up appointment. We decided that we’d meet every Wednesday. One treatment every three weeks. After that appointment they finally sent me home home!

So last week I went to the doctor and everything looks good with my blood work. When the nurse was changing the bandage on my PICC line, it started pulling out all by itself. It was out almost 10 cm and they needed to pull it. There was no way they were going to get so much back into my vein. So I’m also PICC free which is nice.

So this is brings us up to date. Tomorrow is Tuesday, and the day after is Wednesday, my check up day. February 15th is my next treatment date.

The 3rd was Paul and I’s three year anniversary. He cooked me a wonderful steak. It’s hard to believe though that two out of the three years we’ve been together we’ve had to go through all this cancer stuff. Hopefully soon we’ll be done, and we’ll have much longer than three years together.

 

 

Bacon and Peas Creamy Noodles

Ingredients

  • 1/2 of a package of bacon
  • 16 oz of egg noodles
  • 1 large diced onion
  • 3 1/2 cups of water
  • 4 chicken bullion cubes
  • 3/4 cup half and half
  • 1 cup frozen peas
  • 1/2 cup Parmesan cheese
  • salt and pepper to taste

Instructions: 

  • dice up bacon and cook until done in a large deep skillet over medium high heat. When bacon is to you’re particular wellness. Remove from skillet and place on a paper towel lined plate.
  • In the bacon grease, saute onions until golden.
  • Add water, bullion cubes, half and half, noodles and bring to a boil. Bring heat down to a simmer, cover the skillet and allow noodles to cook for 8 to 10 minutes or until tender.
  • Season to your liking with salt and pepper. Add in peas, Parmesan, and bacon. Cook for an additional 2 to 3 minutes or until everything is heated through.

Penne Alla Vodka

Ingredients: 

  • 1 lb box of Penne Pasta
  • 3 tbsp of minced garlic
  • 1 Onion, diced finely
  • 3 tbsp of butter
  • 3 tbsp of olive oil
  • 1 cup of vodka
  • 1 (14 oz) can of tomato sauce
  • 1 cup of heavy whipping cream
  • 1/2 tsp of red pepper flakes (or more if you’d like some more heat)
  • 1 tsp of salt
  • Black Pepper

Instructions: 

  • Cook penne
  • Over medium heat, combine butter and olive oil in a large sauce pan. Add onions and garlic and cook until soft.
  • Add the vodka and allow it to reduce for 3 to 4 minutes.
  • Turn heat down to low and add tomato sauce and heavy cream. Combine well.
  • Add red pepper flakes, salts, and pepper. Allow to simmer for another 5 to 10 minutes and combine with cooked penne.

New Jersey Lasagna

Ingredients:

  • 1 lb ground beef
  • 1 lb mild Italian sausage
  • 2 tbsp of minced garlic
  • 2 cans (14.5 oz) of diced tomatoes
  • 2 cans (6 oz) of tomato paste
  • 2 tbsp of parsley
  • 2 tbsp of basil
  • 2 tsp of salt
  • 24 oz container of cottage cheese
  • 2 eggs
  • 1/2 cup Parmesan cheese
  • 2 tbsp Parsley
  • 2 tsp salt
  • 16 oz mozzarella cheese
  • 8 lasagna noodles

Instructions: 

  • In a pot or large sauce pan, cook beef, sausage, and garlic on medium high heat until brown. I personally don’t usually take out any of the grease but that’s up to your personal preference. Add the cans of diced tomatoes and tomato paste. Stir in parsley, basil and salt. Begin boiling your noodles and allow this meat sauce to simmer until it’s needed.
  • In a medium bowl, mix cottage cheese, eggs, Parmesan cheese, parsley and salt.
  • Assembly: 4 noodles at the bottom of your baking pan. Followed by half the cottage cheese, then half the mozzarella, then half of the meat sauce.  Repeat for another layer. Then cover the top with additional Parmesan cheese.
  • Bake in the over at 350 degrees for 30 minutes or until bubbling.

Do you want to rest? Or do you have more fight in you?

In my last blog post, I told you about the inpatient Chemotherapy I was going to do. November 13th, Paul and I drove up to Kansas City to do my chemo session. I  did three doses every other days. Something that they’ve never done before, instead of waiting for my counts to go up to be released, they actually decided to release me to the Hope Lodge.

My parents came down a week or two after that. I had intended to cook Thanksgiving dinner this year for Paul’s family and my family if they wanted to come. Hope Lodge ended up having breakfast for us and a really nice Thanksgiving dinner. I was really impressed and the food was soooo good. It almost tasted as good as if I was eating at home. Eventually my dad left, and my mom stayed. She was going to stay with me until we had the all clear I was in remission.

Unfortunately this chemo never brought me into remission. One of the days I was at the clinic. I was feeling really tired and I had a fever when I went to the clinic. They immediately did cultures on me and sent me over to the hospital. I can’t stress how sick I was at this point. They ended up finding that I had MRSA in my blood but they had  caught it early enough that it wasn’t going to an issue. The issue was my white blood cells were at 100 percent blasts (cancer cells). If my body wasn’t responding to chemotherapy anymore, there isn’t much more they can do. They said if they sent me home, I wouldn’t even have three weeks to live.

My mom was in Joplin, waiting for us to go home, came back up to the city and Paul called my dad because we didn’t know how much time I would have. Before I knew it, my mom, dad, Chastity, Amanda, and little Autumn was here.

One of the mornings when I was up and starting to feel better, the doctors came in. This was a particular doctor I’ve never met before, but I trust my team so I had no reason not to trust her.She asked me if I wanted to rest, or if I wanted to keep fighting.

I’m 26 years old. OF COURSE, I want to keep fighting. I’m too young to die. They informed me that there was an option for people who basically had no other options left. It was a drug called Mylotarg. Apparently it didn’t prove safer than chemo so it was pulled from clinical trials. Recently they’ve opened it up that you can try it if you have no other options left.

 

And this is where I leave you tonight.

 

An Unexpected Round of Chemo

Once again, the last couple days have been a whirlwind, but that seems to be how cancer goes (From my experience anyways).

Wednesday afternoon was the day that they planned to start my treatment of Ipilimumab, upon arriving they said they didn’t have the medication yet but I could stay overnight and they should have it Thursday or Friday. Little did I know how poorly my blood counts were doing, so my body had different plans for me.

I spent the night at the Hope Lodge and around 8 am I got a call from my main doctor here at KU. He told me that he was in contact with the authors of the article and the people that the treatment had worked on had very small amount of leukemia in their bodies. So he thought because of how low my counts are that we just needed to make sure that my blasts were under 10 percent and I needed to do another bone marrow biopsy just to make sure. I don’t normally do my biospies without sedation but considering my circumstances I really had no choice.

It wasn’t terrible, they gave me some Ativan and Morphine to help with the procedure. I’m happy to say, no tears were had, my only one without sedation that I didn’t cry the entire time.

I went and grabbed some lunch, at my favorite place Sushi Mido and went back to the clinic to find out my fate.

After some waiting, the doctor finally came in and told me that my blasts came back at 50% exactly the news I didn’t want to hear. I would need to go into the hospital again and do chemo. Luckily I’ll only be in the hospital for probably a week or so and they’ll let me go out to the Hope Lodge for a couple weeks till my counts can recover and I can finally come home.

I’m going to be doing High Dose Cytarabine. Day 1 is today. I did a dose this morning around 11 that lasted three hours. I’ll be doing another dose tonight at 11 for three hours. The same schedule will also be on Day 3 and Day 5 and I might be able to go to the Hope Lodge on day 6 or 7.

Thursday they wanted me to admit me to the hospital just then but I really wanted time to go home and see Paul and my buggy girl, so he said I needed to be there early on Saturday. Thursday I actually tried to drive myself home and I had to pull over after an hour. I was so tired I decided to take a nap in the Butler Walmart parking lot. I stopped at 4:30 and woke up a little before 7pm and Paul wasn’t too far away from getting me to drive me home. I really have just been so terribly tired, I’m assuming because of my blood counts being so low.

Saturday we came in and that afternoon they placed my PICC line, but other than that, it was a pretty slow day.

I’m still doing the experimental treatment, just need to get over this hurdle first.