Chemo Roller Coaster

This first week has been a roller coaster. After all the testing on Friday, I had a pretty relaxing weekend. My parents came and we were able to hang out for awhile. We played Monopoly, decorated my room and just hung out. Both my mom and Ryan have been able to stay with me while I've been here.

On Monday, I got the results back from my cat scan, everything came back good and I was cleared to start chemo on Tuesday.

I was optimistic and ready to start chemo on Tuesday. Each day of chemo that I finish is one day closer to getting better. The nurses prepped me and let me know what to expect. I got some anti-nausea medication, then a push of a pink chemo drug called Daunorubicin. The nurse came in a plastic gown and thick gloves and pushed the drug through a large syringe into my PICC line for about 15 minutes. This specific drug is the one that will make my hair fall out. There is a total of three doses, and my hair should fall out within the next two weeks. After the first drug, the second drug was hung on the IV stand and put in through the PICC line. After it was put in I was free to walk around and do what I wanted.

After the second drug was put up on the IV pole, Ryan and I went for a walk around the floor.We did a loop around and went to go sit in the lobby to play Yahtzee. We forgot a pencil in the room, so we stood up to go get it. As soon as I stood up, my legs were a little wobbly, so I sat back down. Seconds later my hands started shaking. Ryan ran to go get the nurse. Within seconds my entire body was violently shaking. I had an infection. All of the doctors and nurses ran to the lobby where I was and began working to get my symptoms calmed down. My blood pressure was very high, I had a very high fever and my entire body was shaking like crazy. My legs were cramping up from all of the shaking, my skin was pale white and my chest was burning. Obviously I was scared, I didn't know what was happening, but for some reason I remained calm. The doctors and nurses were calm, and I trusted that they were making me better.

All of the doctors and nurses were amazing. It was the middle of shift change, so there were about 20 nurses around, as well as the entire team of doctors. They all worked so quickly to help get things under control. Everybody was standing around me, each person performing a specific task.  It was incredible to see everyone working together, and they did it in a calm and seamless manner. I am so thankful for everything they did and continue to do on a daily basis.

After the episode, I as well as everyone was a bit shaken up. The OB doctors came to check the baby, she had a strong heartbeat and was moving around after a few hours. It was decided that I needed a catheter because I couldn't get out of bed. I went to sleep for the night and woke up the next morning.

The next day sucked. There's no other way to put it. I was stuck in bed with a catheter which was uncomfortable, my chest hurt really bad and I was on oxygen. I received many EKG's to assess the chest pain, they all came back normal. In the late afternoon, I finally got out of bed. Once I got out of bed, my chest pain immediately cleared up. A lot of the fluid was building up in my chest and making it uncomfortable.

That day and the next morning were really rough. I wasn't feeling good and my spirits were down. I was getting upset and crying over everything, and not the nicest to be around. I was so frustrated by everything going on and I felt terrible that I was expressing myself poorly. Once again, everyone was amazing. My mom and Ryan continued to be supportive, nice and helpful and helped me get out of my funk. The doctors and nurses helped to make me feel better as well. Countless people stopped in my room to talk and see how I was and to lend an ear. By the next day it was concluded that I had an infection and I would be able to try the chemo again.

I was so scared to try the chemo again given the reaction two nights prior. I was assured that things would be fine, and they were. Again, the doctors and nurses were awesome as well as my mom and Ryan. As the medicine was being administered they came to talk to me to comfort me and to help get my mind off of it. We talked about life, my baby registry and just had some good laughs. After about an hour or two, I was still sitting in bed, had chemo and I was fine! Thank goodness.

That chemo lasted 24 hours, which leads me to today. I finally got the catheter out and was able to take a shower. Before they hooked up the new chemo bag, my mom took a picture of Ryan and I. It seems weird to take a picture during chemo, but normal people take pictures, and this is our new normal for awhile. As much as possible, we're trying to make the best of the situation given and try to be the most positive we can. We still have a lot to be thankful for- a beautiful, strong baby on the way, a wonderful support system, and an excellent team of people taking care of us.

View from the Room

24 1/2 Weeks!

Gearing Up!

I've been thinking a lot lately about why I decided to start this blog and I really can't seem to think of an answer.  For the past few years on Facebook, I've been pretty private. I'd post happy pictures here and there, but try to leave my opinions, personal beliefs and stories to myself. When this happened, I just felt like there was something in me that wanted to share. I debated back and forth as to whether it would be tacky to tell the world I had cancer, but something in me just wanted to scream it from the mountaintops. I remember walking in to the apartment after finding out the news and asking my husband, "Now what? What do you do when you find out you have cancer?" We wound up getting dinner- but, I did wind up writing my first blog the day after.  I know I could have written this all down in a journal for myself, but I didn't. In many ways I'm glad I didn't keep it private. I'm proud of the strength and clarity I'm finding through writing and sharing. Its been so helpful to process and organize my thoughts and really reflect on what is happening. I also don't feel so alone. Its amazing to see the support and love from family, friends, and people I have never even met! I've also been able to connect with people who have gone trough similar situations and that's helped a lot too.

Last week, my good friend Dawn asked me about setting up a GoFundMe page. I had heard of them, and have generally seen them around Facebook as a way to raise money for people in need. When she asked if she could start one in my honor, I was nervous. I've never been good at taking money from people and honestly didn't realize I would actually need it. Remember how I said I didn't always think things through? ;). Well, after she explained what this would be used for, like my medical bills, I was pretty understanding. Yes, we do have insurance, but there's going to be a big chunk that is not covered, or that we're responsible for, and that's super scary. This could go on for close to a year. Put a newborn onto that and its terrifying. That being said, I cannot express the amount of gratitude I feel for the people who have already shown such support with their kind words and encouragement, but on top of that- to spend your hard earned money to help me is just so amazing. Thank you to everyone who has donated, shared the post or even just thought about me. Your support and generosity means everything.

A few days ago, last Monday, I found out I was being admitted into the hospital on Thursday, April 21st, 2016. It was a little unexpected because we thought we were going to go back and forth to the doctor and try to wait out the pregnancy as long as we could. Overall, we decided (the doctors and me/my husband, family) that it would be best to get this taken care of as soon as possible. My doctor shared a scary statistic with me that Monday. If gone untreated, Leukemia can take your life in three to four months. This wouldn't be good for the baby or myself.

The next day my mom, my husband and I went to the wig store. As you might know from my last post, I was a little bent out of shape knowing I would lose my hair. Since I've gotten my wigs, I feel so much better. We went to the store not really knowing much. I've never worn a wig, hair extensions once, but they're much different. The woman in the store was so helpful. We first worked on finding the style I liked, which wound up being pretty similar to how my hair is when I dry and put a curl in it. Then I picked a color. I originally wanted blonde, but the blonde needed to be ordered, so I got two! I was able to take home a brown color that day, and ordered a blonde and received it the day after. They're both made of synthetic hair, with a lace-front. The lace-front helps give the illusion of a hair line or part, and the synthetic hair is nice because the style will stay consistent after washing. With human hair wigs, the hair can frizz and requires more maintenance. I learned that the wigs need to be washed every seven wears, and need to be serviced every month and a half to stay nice. After I got my wigs I decided to cut my hair and donate it.

I was on a mission to do everything I was excited for and wouldn't be able to do for a month, so naturally I did my baby registry! My husband and I went to Babies R' Us and went around with the scanner. I wasn't feeling that great so we had to keep taking breaks and sitting in those great rocking chairs. The plus side is I got to try most of them out for awhile :) This was really the first time I started looking at baby stuff. I was waiting to get back to New York because it didn't make much sense to buy things in Florida and move it all the way back. I was originally going to get mostly gender neutral things because I wanted more kids, but I totally went all girl. I don't know if I'll have more kids now, so I might as well go all out! The other thing I had to think about was bottles. The whole time I've been been pregnant I've been talking about how I wanted to breastfeed and be able to support my baby. I know a lot of people say its hard and could be unrealistic, but I really wanted to have that feeling of knowing that I was doing the best I could for my baby and be able to help them grow and be healthy. With everything that's going on, it doesn't look like I'll be able to breastfeed, so I'm just trying to get used to the idea of that. I know formula can be great too, I just wish I had the choice.

The next day, Thursday, we got ready to go to the hospital. I was waiting for a call in the afternoon for a bed to open up, so we had a nice relaxing morning. We finished packing, went for lunch, and leisurely drove into the city.

When I got to the hospital, they were ready for me. I got admitted and started to meet all of my doctors- there's A LOT of them! Its so cool to see all of these people, sometimes even standing in one room, working together to help me and my daughter get better.

I had to give a lot of blood, get a lot of blood and do a lot of tests. After getting some blood work, the doctor decided that my hemoglobin levels were low and that I needed a blood transfusion. I was pretty nervous for this, I never had one before. I've tried to donate blood, but its different when somebody else's is going into you! The blood pumped slowly through an IV in my hand, which was pretty painful, actually. It took four hours. I have small veins, so maybe that has something to do with it.

The next day, Friday, I got my PICC line and a bunch of tests. The PICC line is a central line which goes through the arm and winds up somewhere near the heart. They used an ultrasound to find the vein, then thread the needle through and watched on a screen to see where it winds up. Pretty interesting, but super strange. It didn't hurt because they numbed everything, but its a little bit sore now from the bruising. I also got some heart tests, an EKG and an Echocardiogram, which is a sonogram of the heart. Those weren't bad. I got to test out the PICC line with another blood transfusion later in the night. It was great. The blood didn't hurt this time and it was done in a hour, score!

The last test of the night was a cat scan. I hated this. It doesn't hurt, but its not good to do in pregnancy. I hate that these decisions need to be made that could cause harm to my baby. My belly was covered in lead and they said it would be just one, but its still terrible. Throughout this whole pregnancy I've been so careful about everything, so much so that I didn't even wear nail polish. Maybe I'm a little crazy. The reason for doing the cat scan was because I had a cough for the last few weeks. I had to get a chest x-ray in Florida, but it was important to get the cat scan to make sure I don't have underlying pneumonia or respiratory issue. If I did have pneumonia and started the chemo, my body wouldn't be able to fight it off and it could be really bad. I do feel comfortable that everything is being done out of necessity and in our best interest, its just hard to swallow.

So far the tests have been coming back pretty good, with the exception of needing blood a few times. It looks like chemo will be starting very soon, maybe Monday.

My friends and family have been great and wanting to be so supportive. The biggest risk right after the chemo is infection. Once I am out of the danger zone for infection, I would love to have visitors!

Once again, thank you for all of the support and love, and for following along with us!

Kristin

How Did We Get Here?

This past year has been amazing. After working as a music teacher in New York for the last five years, my husband and I decided to move to Florida. I had been accepted as a graduate assistant to begin my PhD in Music Education and was excited for a change and to try something new. That summer, we packed up our stuff in a small U-Haul trailer and drove down south.

The decision to move to Florida was tough. We both had good jobs in the city, were financially stable, and really enjoyed our lifestyle. We had great friends, family close by, and were able to enjoy New York City. But, things weren't perfect- although they never are! I was starting to feel stuck in my job, I wasn't enjoying it as much as I though I would when I was younger. I wanted different challenges, aside from the everyday struggles of teaching and living. When I got accepted to school in Florida, we had a huge decision to make. Would we give up our stability for the unknown? Can I have kids while in graduate school? (This was three years, I didn't want to wait that long) How would these changes effect our relationship? We didn't know what to expect but knew that we'd regret it if we never tried. So, off we went.

Before moving out of New York, I started to get serious baby fever. My husband had always wanted kids, but I was never ready. It was strange, I suddenly woke up one day and thought, 'I need a baby, this is what I'm meant to do'. It sounds so weird, but I just got this feeling that my purpose in life was to be a mom- I was ready.

When we got down to Florida, I settled into my school schedule and thought about how we could make a family work. I thought that if we got a three bedroom apartment, things would be easy for the baby and guests and I thought about day care options for me to go to class when I needed. Obviously, I may have left a few things out, oops! Sometimes I live in a dream world. Once we actually got pregnant, things were real and we needed to make our decisions appropriately. We started to think about the things that were really important to us, and the kind of life we wanted for our child. The things important to us were family, friends and a house- all things we didn't have in Florida. While we did have my brother and grandparents three hours away, I still felt like I needed my mom, especially with a new baby.

After careful consideration, we decided to move back to New York after nine short months in Florida. I decided to finish out the spring semester and we made all of our travel arrangements for the end of April. I had planned to fly to New York and my brother was driving with my husband. We planned to rent an apartment and save up for a house.

April came quick, and I was suddenly 21 weeks pregnant. That's when I got the news about having cancer. You can read about that here. Once again, things got real- and very quickly. Luckily we already had everything in place for moving at the end of the month, but we now had to move everything up by about three weeks, and quick. With this type of Leukemia, the cancer cells develop rapidly and treatment or close monitoring needs to begin right away.

I found out I had cancer in Florida and needed to make the decision as to where I would get treatment. The options were to stay in Florida and have my mom come down to help me, or switch all of my doctors and treatment to New York. That was tough as well. I knew I needed the support from my family and friends, but I was starting to become really comfortable with my Florida doctors. They were amazing. I still get personal phone calls and text messages from both of my OB's to check up on me and make sure everything is okay. I was worried I wouldn't find that familiarity and comfort in New York, but I ultimately knew I had to come back.


Since the Friday I was diagnosed (and always, actually), my family and friends have been nothing short of amazing. Nobody could do enough to help. My parents and aunts and uncles were on the phone constantly with every New York hospital trying to find the right place to send me. My brother was rearranging work obligations to help my husband drive the truck up north, and other family and friends were sending me thoughtful messages and well wishes. I cannot thank everyone enough for all of the support and love I have been given this past week.

By Monday we had a better idea of where I'd be receiving treatment. By Tuesday I was on a flight to New York, and Wednesday I was sitting in the cancer center getting another bone marrow biopsy. Everything was very quick and I didn't have much time to process anything. My husband was in Florida packing up our apartment and was on the road with my brother Tuesday night. It was hard to not have him at the doctor's appointment on Wednesday, but I had my parents and that was huge.

After the appointment on Wednesday, the doctor had told me that they were going to try to wait out treatment for about four weeks, until it would be possible to deliver the baby. I would need close monitoring, driving into the city once a week and getting blood drawn in between appointments. I was okay with this, but I knew I'd be bringing a bag with me to every appointment in case I was admitted to the hospital.

This Monday, yesterday, I had two appointments, this time with Maternal Fetal Medicine and my Leukemia doctor. MFM was not happy with delivering the baby in four weeks, as the risks for birth defects and mortality go up. Her suggestion was to go ahead with the chemotherapy while pregnant. I went to my Leukemia appointment after and told the doctor what she had said. His suggestion was that we start chemotherapy this week.

On my way home from the doctor, I got a phone call from the MFM doctor. She informed me that I was a week away from the time where I could terminate the pregnancy and let me know of all the extra potential risks the pregnancy brings to me. This was devastating and I couldn't believe what I was hearing. This baby is saving me, and I have to do my best to save her.

I will be starting chemotherapy in two days and I don't really know what to do. I will lose my hair, so my mom and I are going wig shopping today. Every time I think about losing my hair, I cry. It seems petty to cry about not having hair in this situation as this is saving my life, but it just makes it feel so real. I have been trying to go about my daily life and be as normal as possible, but I know once I look in the mirror and have no hair, everything is real. I have been eating every thing I want, so I guess that's a perk.

Chemotherapy will be given in the hospital. I will be there for about a month. The actual chemo drugs are on a continuous drip for seven full days and the remaining weeks are spent fighting infection. The chemo drugs deplete all of the cells, red, white, good and bad in your body. Therefore, the risk for infection is really high. I will be given antibiotics and the baby will be monitored closely. 

Overall, I'm scared. My doctors have kept me informed as to what to expect with the chemo, but its still so unknown. I don't know if my baby will be okay, I don't know if I'll be okay- the only thing I do know is that I can flight like no other, and I will.

My Baby is Saving My Life

On December 18th, 2015,  My husband and I found out we were having a baby. It was one of the most exciting days in our lives- so much so I took five tests. My husband was at work that day, so I had to find a cute way to tell him. I baked a cake and decked it out in pink and blue with the words "We're Preggo!" He saw it, we hugged and cried happy tears and started to dream about the changes and happiness this new life would bring.

I quickly scheduled all of my prenatal appointments and anxiously waited to start seeing a cute little baby bump. Unfortunately, the scale kept creeping up, but no bump was to be seen! Finally around week 16, little baby started to make its appearance in my belly.

A few years ago I was alerted that I had a bicornuate uterus or heart shaped uterus, which means there is a separation in the middle of the uterus. Upon my first appointment with my doctor, I let her know this was the case and she assured me it would be looked after carefully. She decided to send me to a high-risk doctor for one appointment, just to get some another opinion on how the pregnancy might present itself.

At that visit, the doctor checked all of my records thoroughly, asked a bunch of questions and let me know of the possible implications of my uterus and how the baby was placed. I left reassured that the baby was safe and had my anatomy scan a few days later.

At 21 weeks, on April 4th, 2016 I had my anatomy scan. At this scan, the baby is measured in detail- we found out we were having a baby girl! I met with the doctor, she let me know that the high-risk doctor wanted to see some blood work, so I went and got that taken care of. My husband and I went home, cried happy tears, went and bought some cute girl clothes, and told all of our friends and family.

The next day I received a call from the high-risk doctor I had seen a few days prior. He let me know that something in my blood was coming back abnormal, and asked a bunch of questions to try to get to the bottom of it. He gave me his phone number in case I had any questions and I went along my merry way. A few hours later I received another call. This time, it was the high-risk doctor again, and they wanted to me go to the hospital for further testing to see what the abnormality might be. I cried, and my husband and I went to the hospital.

I got to the hospital the day after I found out I was having a baby girl. I was admitted to the OB Unit, hooked up on an IV and began getting checked every few hours. It was strange since I hadn't felt any different or felt like anything was wrong. They began taking blood, about three separate times. I still didn't think anything of it considering I felt good. I sat in bed, relaxed, watched some "Fixer-Upper" and went to sleep.

I woke up the next day and met with the hematology department. Two doctors came into the room and reported to me that abnormal white blood cells were showing up in my blood work. They were pretty clear that these types of cells were very abnormal and something to be concerned about. They told me these cells were usually seen in Leukemia, a blood cancer. I immediately began to cry and almost threw up. They ordered a bone marrow biopsy, and that was completed a few hours later.

The bone marrow biopsy was not as bad as I thought it'd be, but it was not a walk in the park. My husband was so great, holding my hand throughout. The doctors numbed my hip bone near my back and scraped pieces of my bone along with some marrow. Afterwards, my back was very sore and it was difficult to walk. It felt like the muscle pain after getting a shot in your arm, but much worse!

After a few more hours in the hospital following the bone marrow biopsy, the doctors discharged me, as they were not giving me any treatment. They told me I would get the results in two days.

Those were the longest two days of my life.

I told my family, a few friends and started to think again how my life, my husbands life, and my baby's life would change. I'd like to say I thought positive, but I was more realistic and kind of had a bad feeling.

Two days later, on April 8th, 2016, I went to the cancer center to get the results of my test. I've never had test results before, I'd always imagined you go in a room and they deliver the news. This was a little different. I checked in, and they wanted to take more blood. I went in to the triage room and the nurse started asking my name and date of birth, all with a needle in her hand. I started crying- I was so confused that they were taking blood. I thought they were just telling me some results. She assured me it was just to check and it was fine.

A few minutes passed, which felt like a lifetime. I was greeted by my two hematology doctors that had came and talked to me in the hospital two days prior. They delivered the news:

"I'm sorry but, you have Acute Myeloid Leukemia" 

I cried, asked questions and cried some more.

The doctors explained what will be happening in the next few months and assured me that the baby as well as myself will be taken care of as best as possible.

My husband and I went home and told our family. It was emotional, it sucked, but I was somehow finally finding peace, well as much as one could be. The two days of waiting for results was grueling. I feel like I had somewhat prepared myself for the worst, and wanted to be as strong as I could for my family who was hurting.

Its difficult to explain how it feels. I do not feel pitty, or why me. I'm sad, and I think that's to be expected. But overall, there's this feeling like everything good is being taken away. I love being pregnant, I've felt great, but now it feels like my joy of pregnancy is being ripped away. I have faith in my doctors and know they are going to do everything they can to help get me and keep baby girl healthy.

I can't help but think, my baby is saving my life.