Happy to be Home!

I'm home! I'm so excited that I finally got to go home! I turned to Ryan when I woke up this morning and just said, "What the hell happened last month?" It was such a crazy experience that it almost doesn't feel real. At times, it felt like I was never going to see the outside of the hospital! Last Saturday, the final part of the blood count the doctor's were looking for, neutrophils, started to come in. I don't really know much about the cells, other than they're a type of white blood cell and that they were really important for me to have before leaving. Everyday since Saturday, they started climbing higher and higher, with one being the magic number to go home. While I'm still not at normal, healthy blood levels, I was high enough on many things to be able to come home. I still have to be very careful when out and about, basically avoiding crowds, being super careful with food, and staying away from germs. Over the month I've become so afraid of germs. I want to give everyone I see a hug, but I still have to be careful and hold back.

Otherwise, being home is great so far. It hasn't even been 24 hours, but its nice. I missed my dog so much, so it was nice to see her. I have a doctor's appointment next week for another bone marrow biopsy and sonogram, and I have to lay low until then. I'm still pretty weak and I'm starting to get a pretty big belly, so its not hard to sit home and take naps! In the next few weeks I'm looking forward to a bit of normalcy-  not walking around with a pole, not getting blood taken all day, and being able to go outside! 
On the day I was discharged, Ryan and I got to take a tour of the Children's Hospital where I will be having baby Emma. We got to see the labor and delivery unit, as well as the NICU. Emma will be delivered around 32 weeks, so we are planning that she will have to stay in the hospital for a little while. If all works out, Emma and I will be in the hospital together but in separate units. She will stay until she is healthy to go home, most likely about 36 weeks, and I will be back after I deliver her for my second round of chemo, another month long stay. The labor and delivery section of the hospital was beautiful, everything is nicely renovated and overlooks Manhattan. Touring the NICU was a great experience. We sat down with one of the doctors and got many questions answered, as well as talked to a social worker to ask about some logistical questions. Afterwards, we got to see some of the babies. There were babies there as small as 1 lb, and they were thriving. Babies were either on a warming table, in an incubator or in a crib. We got to see some babies that were born around 32 weeks, much like what we will be experiencing. We were told to expect her to possibly be on a feeding tube and ventilator. Having Emma go to the NICU doesn't really scare me too much. Being born at 28 weeks myself, I've heard the stories from family of what to expect, and believe that she will be big and strong in no time!

Looking ahead, I'm just really going to try to enjoy the next few weeks. I'm so grateful for everything going smoothly and am happy to be one step closer to the end of this.

As always, thank you for the love and support!

Kristin

 On our way home from the hospital! By the way, the wig is super uncomfortable and I took it off soon after!

No Hair, Don't Care!

There's a motto around this floor of the hospital, "quiet and boring." This basically means that that you're doing pretty well if you're not having any major problems that require attention. I'm happy to say I've been pretty quiet and boring for the past week or so. Although, there was one little hiccup last weekend, but we got over it. I was receiving a platelet transfusion, which I've gotten many times. When the transfusion starts, the nurse always says to let them know if you have any itching, headaches or shortness of breath. When the transfusion started, I was fine. About 15 minutes into it, the bottom of my feet started itching, then my hands. The nurse checked me out, and then went to go get some IV Benedryl. It turned out I had an allergic reaction to the platelets. In the time it took to get the Benedryl, which was pretty quick, my entire body was itching really bad. I wound up getting the IV Benedryl, what a trip! Literally within seconds of it going through the PICC line I was loopy. It makes your brain feel weird and you can feel it moving through down your arms, to your hands and finally through to your feet. Its the same dose as the pill I usually get, but it goes straight through your veins so it works super quickly. I fell asleep within minutes. They're not really sure why I had a reaction to this bag of platelets, but each bag can be a little different. Sometimes the number of preservatives or additives can be different and just cause funny things to happen. Every time since I've gotten platelets they use the IV Benedryl, I've been getting some good night's sleep!

Last Friday night was eventful, I got a haircut and I have no hair! For a few days before I cut it, it was falling out on my pillow, all over my clothes and when I put my fingers in my hair clumps would come out. That was super hard to go through and see. The first time I saw the clump, I called my mom crying. She was so nice and went straight to the store to get me some scarves. I knew then that it was time to get it shaved. I have been told by many people that once you start seeing it falling out, especially in clumps, that its best to take care of it because then its your choice and on your terms. Turns out, they were right! At lease for me, anyway. I feel so much better now that it is gone, I don't have to see it everywhere and now I can get used to it. I do have my wig in the hospital and I tried it on one day, but I've mostly been just wearing scarves or hats. Its not really practical to wear a wig here, I lounge around in pajamas all day and nobody cares what my hair looks like. Quite frankly, I don't even really care that much anymore either, we'll see how that changes when I'm out of here :)

Something I've found interesting about the whole hair thing is seeing people on FaceTime for the first time. I like to give people a warning if I'm wearing a scarf- I don't want to startle people with such a drastic change. Like I've said in past posts, I personally think losing your hair kind of makes cancer look real on the outside. I live this everyday and am pretty used to it, but for people who I talk to who haven't seen me since cutting my hair might be a little taken back when they see me. It doesn't bother me, I just don't want to make people uncomfortable.

I haven't lost my eyebrows yet, and don't know if I will. I was talking about it with my social worker last week and she told me about a program called Look Good Feel Better. This is a program that provides women with cancer tips and tricks for dealing with issues regarding their changing looks. I have noticed that my eyes are looking different. They're darker and kind of pink near my eyelashes. I guess that's to be expected given the beating my body is taking. This organization gave me a new bag full of nice makeup, and they're coming here tomorrow to show me how to use it! I'm so excited, I actually have a plan tomorrow. I was really excited about the makeup because I was going to throw mine all away. Its best to start new just to make sure things don't have bacteria or germs floating around. It turns out that this program is usually for women who are completing chemo as an outpatient and meet as a group once a month. The social worker reached out and asked if they would come see me because I'm stuck here, I'm so appreciative! The nurses are so excited too and can't wait to see how it comes out.

As of now baby Emma is kicking up a storm! I haven't heard anything from the OBgyn's, so I guess no news is good news!

As always, thank you for the love and support!

Kristin

 Here's a picture of my dog and her cousin because I love and miss her, she's cute, and I don't want my face to be the thumbnail for the blog! (My aunt is taking excellent care of her!)

 New Hair!

Mother's Day

Last week was pretty good, well, as good as you can get for being in a hospital. I finished the last bag of chemo on Thursday in the middle of the night, and that was a reason to celebrate. Being attached to the chemo is annoying. Since each bag lasts 24 hours, they are strategically timed for you to be finished in 7 days. There were some times where I had to be unhooked for a shower (which they don't like to do) or when I had to go for testing on another floor. I started the chemo on a Thursday at 3pm and technically finished on a Friday at 3am. I must have taken too long in the shower!

My in-law's flew in from Ireland on Wednesday to see Ryan and I. While we were kind of stuck in my room, it was so nice to see them and to have their support. We were able to talk and have normal conversations, and that was nice. They brought many gifts from family, Ryan and I are so grateful for everyone's thoughtfulness. I'm excited for them to come back once the baby is born. 

On Thursday, which was my last day of chemo, I got a beautiful surprise from the nurses. They had arranged a surprise for me to get my nails done. I was so surprised and grateful. For a few hours, it actually made me feel a little normal again. A nail technician came in and did a special manicure and pedicure. Since my platelets and white blood cells are very low, I couldn't get my nails or cuticles cut, but she still managed to make them look and feel pretty. I walked around the floor afterwards and showed off my nails and everyone was so excited for me.

Sunday was Mother's Day, which was also really nice. My parents and in-laws were here and we were able to spend some time together. My mom brought cookies for the nurses and they were really appreciative as well as a card for me. Ryan also gave me a very sweet card. The PA's gave me a cute gift bag filled with nice beauty products like lip balms and face masks. One of my doctors set up that I would receive special meals from the restaurant upstairs, I had bacon and eggs and even steak for dinner! All these little things made me feel really good and normal, I'm so appreciative.

On Monday (26 weeks), I had a sonogram. On sonogram days I get a wheelchair over to the Maternal Fetal Medicine section and get checked out. The technician was doing her scan and Ryan and I were watching on the screen. The baby was moving around a lot, which I have been feeling very strongly for the last week or so. The kicks have been so strong that my stomach moves and they can be felt from the outside, so exciting! (and reassuring :) ) While I was getting the sonogram, the technician said it was early for a 3D image, but she tried anyway. On the first try, she got a picture of the baby's face and she was SMILING! I couldn't believe it. I'm going to take that as her way of telling mom and dad that she's okay. Always looking for that silver lining.

I try to keep these blogs positive, but also honest. For the last few days, its been getting harder and harder to even get out of bed. They said that the two weeks after the last day of chemo would be the worst, and I'm starting to see it. Today especially, my mood just isn't there. I have an itchy and ugly drug rash from one of the many antibiotics I'm on, my PICC line is bothering me, and I'm just so over everything. This is definitely the hardest thing I've ever done and in my life, and hopefully will ever have to do.

There has been some talk lately about doing a stem cell transplant after the second round of chemo, if we are able to find a perfect match. In my situation, this disease can be cured through chemotherapy alone, but I could have a better chance of a cure, or not relapsing and a shorter hospital stay if I were to try a stem cell transplant. There are some risks associated, like my body rejecting the stem cells, but the doctor assured me that they would only do it if they found a perfect match. Statistically, siblings have the best chance of matching. I'm appreciative that both of my brothers agreed to be tested to see if they are a match, the results will be back in about two weeks. If they do not match, we will go to the bank. In the bank, people volunteer to be tested to see their type of cells. If it shows that they are a match, they would be asked to donate their cells to help someone in need. If you're interested in joining a bank, you can visit https://bethematch.org/ to find out more information and  where and how you can donate.  Also, blood and platelet transfusions are huge, I get them everyday, sometimes twice. If you're interested in donating, visit http://nybloodcenter.org/

Looking ahead, this is going to be a very long road, about 8 months. I still have about two to three weeks left in this stay, then I'll go home for about a week or two, and come back to have the baby. The baby will be born around 30 weeks, so she will spend some time in the NICU. After I have the baby, I will have about a week to recover and go back in for the second round. There are 4 rounds total, each about month, and they will most likely all be done in the hospital. Since we live so far from the hospital, they need to be done as an inpatient. If I were to get an infection or fever, much like I described in the last post, I would need to be close to the hospital. Seeing how fast things can escalate, its probably the safest place to be. Unfortunately, the baby would not be able to be with me as there are many germs around and it would not be safe for her. I can't help but think about how difficult it will be, but we are also still throwing around other options of places to live to hopefully be able to do the treatment as an outpatient.

Overall, I'm trying my best to stay positive, even though its hard sometimes. As always I am so grateful for the love and support through this process.

Kristin

 Emma Grace McKinley :)

Manicure and Pedicure