Getting through this weekend, and why the fight is worth it!

So what's up? I hope you're all doing well. Thanks again for reading. I am almost a week out from my last chemo treatment and my levels are at their lowest. Last night I felt pretty crappy. Had a headache and really tired. I thought for sure I was headed toward a fever. I took some tylenol and got some sleep and I feel better today although still really tired. 

I went to the clinic today and my white cell count is .6 so for the next couple days I have no immune system. This is really scary for me and has made me borderline paranoid about germs. I just really don't want to have to go back to the hospital. I have these masks to wear that keep me from breathing in germs. You wanna make someone uncomfortable and stare at you awkwardly? Wear these out in public while running errands ; )
So not much else is going on around here. I'm mostly gonna just stick close to home and live in a bubble. I did want to take this time to talk to you guys a bit about light the night I've mentioned a few times. Before I do, I feel a little uneasy about this. I don't usually do the whole, jump on a charity's band wagon, ask for money thing. It makes me feel weird. Like what is so special about this cause, or my cause that I have a right to ask you to give up your hard earned money? That being said, I promise this will be the one and only time I bring it up from here on out. With that I give you my begging: 

If there's one thing I've taken from this process, it's that this disease does not care if you are young, old, a mother, a child, a spouse. If you would have asked me a year ago what I would be doing right now, the last thing in the world I would have guessed is that I would be battling leukemia. My family has been extremely blessed in that we have an amazing support system and health insurance that covers my treatment. One person in the United States is diagnosed with a blood cancer approximately every four minutes. Not everyone is so lucky. The leukemia and lymphoma society helps provide support in every way including financial. The light the night walk is a fundraiser that helps support these efforts to help patients like myself who are dealing with a blood cancer. Survivors, family, and friends, all those touched by this disease come together to celebrate those who have been lost, and those who are surviving. There are balloons (each color representing either a survivor in white, family of in red, or someone lost in gold) each with a light inside. At the end there are family friendly events. This will be my first and I cannot think of a better way to celebrate what will hopefully be by then my clean bill of health. I am asking that if my story has touched you in any way while reading to please consider donating. Even just $1. This is a cause I have become passionate about because I know what it is like to be touched by this disease. I am lucky enough to be on the other side and I want to help others going through this as well. 

Lastly, I was kinda surprised by a conversation I had today. The nurse at the clinic was talking to me today about Lillia and about school starting again (SO excited btw) and made a comment about how she doesn't know how I am juggling all of this at the same time. School, Lillia, my amazing husband, the new LLS stuff, housework, to me is not stuff to be juggled. These are all things I have a passion for and love to no end. These are what I love to do so they are easy and they are what make me juggle and fight through the treatments and time away. It's not hard when it's fun. If it weren't for these things and especially my family, I don't think I would be fighting near as hard. So thank you to my husband and daughter, to my friends, and all the things that make this worth it. I love you all. And thanks for listening to me ramble through another blog. =) Take care and talk to you soon, H

Round 3/4

Hey everyone. Thanks for reading again : ) Hope this finds you well. I am finishing up round 3/4 of my consolidation chemo. So glad it's about finished. Can't believe after the next round I can finally put all of this behind me. Well for the most part anyway. It has been a journey and one that has effected my perspective and life forever. I'll always be worried about it coming back, but it has taught me not to take life for granted.

On Tuesday a friend of mine came to visit. It was so cool to hang out and catch up. There's a lot of free time here so I really appreciated that. On my way back from walking her to the parking garage I noticed the woman in the room next to mine sitting up in bed. I didn't think anything of it. You walk past rooms and see people all day. Nothing new. That night she coded and in the morning her family was here. She didn't make it. I found out later she had been doing well and was actually supposed to be going home. I didn't even know her and yet I still felt a bit sad because it was just so fast. My thoughts go out to her family wherever they are. This is a horrible disease. 

The next day my husband and daughter came to visit. That visit is what I look forward to all week. I miss them so much and to see them come through the door reminds me of what this is all for. It's so funny, word around here spreads fast and our daughter has such a personality she's like a little celebrity around here haha.  A couple hours after they arrived one of the PCA's I had on the 10th floor came in my room and wanted to know why we hadn't come up to visit yet haha. Everyone here is so great. This day was really cool though because Drew (another of the PCA's on 10) does photography too and had set up a station for the family's to come and have pictures taken. So the three of us got to go up and play around a bit while having that photographed. I can't wait to see the pics. That really meant a lot to me to have that done and it will be nice to look back on. We got through this as a family with smiles on our faces. Really cool too is that the 8th and 10th floor put together a team for the Columbus Light the Night Walk and one of our pics is gonna be on the banner they walk with! Isn't that neat? 

So really not much else going on here. Yesterday and today I'm just watching a bunch of netflix LOL. This round has been complication free so that's nice and I am going home to live in bubble until my counts come back up so I don't have to be back. My next date is set for Aug 30th. I have signed up for classes this semester so that is exciting for me. Just to get back into the swing of things. And in the Spring I will be starting the nursing sequence!! I don't know why this all happened or even if there is a grand why. I'm not really one to buy into all that master plan stuff or even karma really. In the beginning that's all I wanted to know was how this could happen. There is no answer. They don't know why yet. But I do know that for all the crap it's thrown our family, it hasn't been for not. It has made us stronger, really shown us what we can go through, and I feel like a better person for all of it. I'm definitely not afraid of needles anymore ; ) 

Until next time... =) 

Heather

G.I. Jane

Hey everyone =) Hope life is treating you well. It's been a while since my last post. I really want to get better about that, really I do, I just forget about stuff like this when I'm home. So what brings me back today? Well.. reality. This is two-fold. One, I want to talk about losing my hair, and two is something my husband inspired me to talk about...

Most of you that are reading this are my facebook friends. So my husband and I were talking last night and he said to me (paraphrasing here) "ya know, we never show our full selves on facebook. Just the strong parts. Like with all the cancer stuff. We post the positive and the good things going on, but like the other day when you were crying, we don't post that." That really made me think. One of the goals I had for this blog was to be real. And I have posted gripes and what's been going on with me, but what my husband said was true. I haven't been talking about that side of things that come up. And partly because I'm not one to focus on the negative. I really don't like to. I have moments and I like to move on, but how real am I being if I don't touch on the emotion part of all this that I am having from time to time.

So here is why I was crying the other day. My husband and I were talking just about planning stuff for the near future and how we were going to handle certain issues. One of the things he brought up was how he was going to put in for his next round of time off so I can go to get more chemo. You see the past couple times I have had chemo it wiped out my immune system. I got fevers and had to go back for a week. The first time was much worse than the second. This was added time he had to take off that we did not expect. In the middle of talking about all of this, the guilt hit me. I have such guilt over all of this. It has turned my family's world upside down. They didn't ask for this. My husband has to take all of this time off and deal with taking care of Lillia, and the house, and me and etc and my daughter has to having me gone and visits back and forth to the hospital and me not being my best some times and etc and while I know she's resilient and he doesn't mind I still feel horribly about it. It just started coming all out. I feel so sad they have to deal with this all and I feel useless some times. I feel like I'm not only not contributing to the house anymore but I'm taking away from it. I'm adding all of this pressure and burden to the people I love the most. As always my husband was great at making me feel better and helping me to know what I already knew, that he in no way felt that way. It was nice to hear though. But at times I can't help but feel like that and it makes me feel sad.

I cry when I feel home sick or scared about a procedure. Last time I was in they had to do a procedure (I'll spare you the details) that I could not have felt less strong, sexy, or to say the least like a 26 year old young woman. That felt devastating because it was a reminder that I am not completely healthy. I feel robbed that I am going through this garbage at such a young age which I get angry about at times. With my first fever, my line was infected. They had to take it out. The next day they spent the whole day sticking me with needles. The tried to put in a pic line but no matter how many shots of litocane they gave me I could feel every bit of her jabbing into my arm. Especially when she would hit nerves. They stressed me out so much by the end of the day, they couldn't get any more blood because my veins had closed off. I spent the good chunk of that day in tears. Couldn't eat. Couldn't fall to sleep because every time I would hear a noise I would jump awake thinking they were coming back to try for more blood. Awful. During the day over there when my family can't come and I go down to the cafeteria to eat I feel lonely. And even though I know it's all worth it I feel sad that I am missing all this time with James and Lillia at home. So there it is. There's my junk. In all it's reality. There has been a lot of positive in this situation and I mostly focus on that and I do hope that has come out in this blog so far. It's what helps me stay strong. But by no means am I strong. I am a human and this stuff comes up too. This is the reality of the disease. I hope by sharing it all it can help even just one person out there. Because it can be overcome. It can be beaten. And you can look back on this stuff and laugh and most of it. That first procedure I mentioned, James and I are already making jokes about it. Sometimes it's all you can do.

Speaking of things to laugh at. How about my chia pet lookin head? ; ) I ran into a woman at the cancer center a while back. She has breast cancer. She asked me where I bought the hat I was wearing. (I said cjhats.com) :D She then explained that today was the first day she woke up to clumps of her hair coming out and looked sad about it. I remember that feeling. You know when you have to get chemo that losing your hair is a possibility. Actually you could probably become very rich betting that your hair will indeed fall out. But there's still this part of you that holds on that maybe just maybe yours will be the magic one that won't. But then it starts happening in stages. At first it just looks like you're shedding a bit. It gets a little worse every day until you get this:

It's a little creepy to see that come out in your hand to say the least. Plus your scalp is itchy and it's just a mess so you know...it's time. Let's buzz it off. I went shopping online for some cute hats. Shopping is always fun. And I told my PCA. I was ok up until I heard the clippers turn on and then I thought... oh man what if I end up looking like an alien, what if my head's lopsided, WHAT if I have a HUGE weird looking mole with a hair sticking out of it. Well the hair would be gone so that's a plus. And I started to cry. Then I realized how vain I must be that I'm so hooked on what I look like without hair at a time like this. And I cried more ; ) LOL. Then it was all gone. The floor was covered in brown hair and I looked like G.I. Jane. Coincidentally the nurse I had that day was in the military at one point. She told me all about cutting her hair off at first and how she felt. I told her I was afraid of getting the "pitty look" from people. She said she saw patients with their hair gone as being like a badge of honor. That I was a warrior who was coming out the other side and this was my bad ass scar. I like that. I felt a lot better. And that was the last time I felt sad about my hair. However up until a while ago I would never be seen without a hat on.

 I finally started leaving it off but only at home. Well that day at the cancer center, I whipped that hat off and told her, "look! It grows back". :D And told her what the nurse told me and that it would be ok. I remembered feeling how she felt, but it's better than the alternative. I hope I helped her to feel better. 

Since then I've showed a few people my head but I'm still working on leaving it off full time haha. I think today though I would like to show everyone my chia pet head ; ) Plus I want anyone going through the same thing to know that it's okay to be proud of what you're going through. Not ashamed of it. It's a battle scar. So here goes:

Oh and now it's a running joke that Lillia and James like to pet my head LOL. Lillia asks to kiss my head every night before bed. That makes me happy. Plus I can't lie head rubs and feeling the breeze on my scalp feels pretty good ; ) bahaha I will enjoy it when it comes all the way back though! I do miss styling it. 

Well I have written way too much but I hope you have enjoyed. I am headed back tomorrow for round 3 of chemo. Then only one more left!!!! Take care and thanks for reading =)

Love, -H