Friday, May 28, 2010

Suntans, Tattoos and Radiation...What??

It feels like years since I last wrote on my blog! I guess the past week I haven't had much to say or I've felt so horrible I didn't feel like saying it. This second treatment was definitely worse and for some reason this week seemed worst than the last week! I think its because this past week I didn't have someone here with me at all times to help so I became really worn down taking care of Presley. I've been feeling more angry than usual with the fact that I can't do all the things with her that I would like. Also, the fact that I am just anticipating the third treatment now to be horrible because this one was so bad. It's really been getting me down to think that this is not even almost over for me yet. I just want to be back to normal so bad that I end up doing things that I shouldn't, like going for a walk when I'm really not up for it, then I wear myself out and end up nauseous. Plus the fact that my brain does not work anymore! I made all the effort to get to the PET scan I thought I had this morning at 7:30 just for them to tell me I had the dates wrong and it's not until Wednesday morning at 7:30!!! Now I have to do that all over again. On top of my brain being messed up from pregnancy, now I have chemo brain!! It wasn't all a loss because I had see a Radiologist at 9am anyway. The radiologist went over all the pluses and minuses of treatment then tells me that I have to have a month of radiation on the area under my arm to help kill all the cancer and prevent it from spreading. Here is the crazy's one treatment a day, Monday through Friday for 3 1/2 to 4 weeks! She totally blew me out of the water when she said a month. I was told at the very beginning that I would most likely have to have radiation but had forgotten about it through all this. Just when I thought I was almost done, they tack another month on! The whole process is pretty crazy. Before you start treatment you have this long appointment where they go through and map out all your days with you so it fits your schedule. Then they custom fit this covering to go over my body to shield the certain parts from the radiation as well as giving me some custom "dot" tattoos so they can mark exactly where they want to place the radiation. Each day I go it should only take 15 minutes for the treatment. The actual radiation part only lasts a couple of minutes though. I also will get a tan in the immediate spot and maybe even burned but the burning will be minimal. It was a little disappointing to hear that I'd have to go through all that but then she said that the chemo combined with the radiation will give me over a 90% cure rate. So I can't be too upset after hearing that! The biggest risk with the radiation is the fact that they can't fully avoid my breast tissue which will give me a higher chance of getting breast cancer in my lifetime. I didn't know this but all of us women have about an 11% chance of getting breast cancer in our lifetime and mine will just be a little higher. So in the long run, I'll just have to start getting a mammogram every year starting in my early thirties instead of forties. Oh well. I can't worry about everything and I am going to take that bit of information and tuck it away in head but try and not dwell on it.
On the bright side, Presley is being so precious right now! She has this chair that has a mobile thing that goes over it and she has gotten really good at grabbing the rings and toys with her hands. Now she has moved on to grabbing them with her feet! It is so cute! The toy in the middle make noise when you pull it so that's the one she always tries to get her little feet in to pull it. She is totally amazing to me. Another plus is I got her quite a few cute outfits today along with her very first bathing suit! That was a huge purchase. It felt like such a big purchase because she never seemed like she would be old enough to take out in the sun and actually do something with her. She was so fragile and tiny when she was first born and I was extremely protective of her the first 6 weeks of her life. It wasn't until all my medical issues started that I actually took her out. I guess having a million doctors appointments every week kind of threw me into leaving her with other people and taking her out in public. I used to be so paranoid about everything. Now I'm just accepting that she is in God's hands and as long as I pray for her every day and do the best I know how, that's all I can do.

Friday, May 21, 2010

Just Another Day

Presley. Beautiful and perfect.
The picture of what life is all about
No one makes me smile like her
In her eyes, there is a God, no doubt

Murphy. Strong and daring.
The picture of what laughter really ought to be
You changed my life when you came along
There will never be another, like you and me.

Cancer. Keen and relentless.
The picture of fear, loss and things unknown.
Though my body is a slave to you these days
I will always be Queen, you will never take over this thrown.

Faith. Survival and happiness.
The picture of what gets me through
Always here to guide me in the dark.
Father, I only possess this strength, given through you.

God. Sovereign and forgiving.
The picture of strength and might
Never gives up on me or forsakes me
Only through this trial, have I found my new life.

Presley is now sleeping soundly in her crib. I guess I haven't mentioned yet that she has been so fussy all week because I think she might be getting her first tooth. My mom said my older sister got her first one at 3 months but we'll see. All signs lead to that; she's got a little white dot on her bottom gum, she's fussy and keeps wanting to chew on her hands. It actually made me a little sad because it means she is growing up too fast. I am just enjoying every stage of her life so much that when one passes I kind of miss it. She giggles now but not a full laugh, she's about to roll over, a tooth...Gosh! She is going to be 4 months here soon too. We went on a walk tonight with her and she was so quiet the whole time. She just sat in her stroller, chewed on her blanket and looked around. It's also so sweet to see how Gary is so much more interested in her now that she's actually responding and doing things. She smiles if you just look at her and he loves it! He feeds her a bottle almost every night when he gets home and holds her until she falls asleep. It's so precious and makes me a happy momma to watch it!

Monday, May 17, 2010

This is Who I am Right Now

This is who I am right now
No need to try and hide it

This is all I can do for now
So I'm trying to stand up and fight it

Of all the nightmares and all the cures
Not one of them ended in these few words

But I know now that I'm here for a reason
And like everything else
Life has it's own time and season

So I love the ones
Who bare this burden the same
And anyone else who's ever known this kind of pain

Like treading in waters so very deep
Trying to find the lost part of me

I find deeper meanings of myself
In broken places I've never felt

In the end it's all about your heart
Not what you say or do that sets you apart

So I give of myself what I really mean
Hoping I can ease the pain for someone
Who's done the same for me

Saturday, May 15, 2010

Be Thankful for What you Have...

I'm feeling like this treatment is going be worse. I was sick all last night, have no appetite and keep getting hot/cold flashes from this hormone injection I've been getting. All I wanted to do was just go back to bed but those steroids make it hard. Gary and I had our counseling appointment and it went pretty well but looking back I should have scheduled it for a time when I was NOT going to be on steroids. I felt a little jittery in there and got a little more upset than I normally would. So bad mistake on my part. Still, we did get some things accomplished and I'm hoping the techniques she gave us will help us to cope better and not take our frustrations out on each other as well as forgive each other for some past hurts. Today has been pretty good. We had some great friends over who were so sweet to bring us dinner. I haven't really been in a cooking mode lately so that helps out a lot! I used to LOVE cooking. I pretty much never cook anymore because I just get too tired. Oh won't last forever. I found this really cool quote that lifted my spirits:

“Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough.” Oprah Winfrey
In my situation I feel like it's important to focus on what I do have. So I'll make a list.
1. My Daughter, who makes me smile, feel a love like I never knew I had and makes everything that is wrong all ok.
2. My Husband, the man I've been in love with from the moment we met and have spent the last 5 years loving.
3. Chemotherapy, even though it is very painful and has taken a lot from me, it is going to cure this horrible disease. I believe I will be cured.

There are so many other things but I thought I would list the top 3. I think if every one took time out every day to look at the things they are thankful for, it would make any bad day a whole lot better.

Wednesday, May 12, 2010

Screw Lymphoma!

Starting to feel a little sad today. I'm just dreading starting all over again with treatment. I guess the biggest thing I struggle with is not being able to get out and do things! I'm just such an active person and it's been really hard to not be able to go outside for a walk when I want, work out or go do all the things that I would be doing if I weren't going through treatment. So I'm trying to make this last week count and have been. It's just really tough to not look at the negative end of all this. That's another thing I have realized over the last week, I have to look at the negative. I know it's very important for me to be positive but I can't ignore my feelings either because then I'm just going to have to deal with it all later. I guess I feel a little guilty when I have those moments when I want to cry or get the feeling that this is all not fare. I feel like I have so much to be thankful for. I'm in stage 1 and I feel like there are so many people who aren't as blessed to have a something that can be curable. We were watching a little documentary on 'Locks of Love' and they were interviewing these children who were receiving there wigs and the whole process that goes with it. I felt so bad for those little kids. They were still so happy too. That's one thing I can't understand. Why do little children have to suffer like that? There was this one little girl who was so insecure about being bald and wouldn't go anywhere without something covering her head. I felt so bad for her. Growing up is so hard and those kids have to deal with not only cancer but losing their hair. So after watching that I felt like to be complaining about my situation when there are sweet innocent children who have it way worse than I, seems wrong. My mom keeps telling me that I need to cry and let my emotions out because that's what they're there for. I don't know. I just can't get a hold on how I should feel right now or if my being so positive this far is me being in denial of what is actually going on?? Gary and I have an appointment to see a therapist on Friday to talk about what were going through and to help us understand how to handle it together. I think us having our first baby and then having to deal with this is too much for us to take on alone. To be honest, we have been taking our frustrations out on each other and that is the worst thing we could be doing. Why is it that people take things out on the people they love the most?? It's not right but we all do it. I think I'm going to get into counseling for just myself too. I'm struggling with feeling like I don't recognize myself. Obviously, physically I don't. To make it worse, I was at my follow up appointment yesterday and one of the nurses that I had been talking to and who always said hi to me every time I went in didn't recognize me this time. I had my scarf on and wasn't wearing any makeup but I said hi to her and she said hi back but it was obvious she had no clue who I was. I could tell she was trying to place me but it kind of hurt. It hurt because it was just one of those moments where I couldn't deny that this has all taken a toll on me physically. But like I said in my last post I'm just so much more outgoing than I was before. So that's a plus. But along with parts of me that are more secure with myself there are still those parts that are more insecure. I guess I've been used to being such a healthy, strong person it's hard knowing and dealing with the fact that my body is sick. Then add on knowing all the long term affects the chemo will have on my body is difficult too. I guess I just need help right now learning how to deal with all these thoughts and feelings. Hopefully the therapist will have some good advice for Gary and I.

Sunday, May 9, 2010

Now this is all so real. I had to finally shave my head. I actually had a lot of hair left but it was just falling out everywhere. I think that part was more traumatic than actually shaving it. It was like I was losing a piece of myself every time I looked down and saw it all over my clothes. So it’s a done deal. I have cancer and I’m bald. Gary shaved it for me…which wasn’t too bad of an experience. I tell you one thing, he takes a lot more time to shave his own head than he took to shave mine! He left some longer pieces at certain places but I didn’t say anything to him. I’m sure it was a pretty tough thing for him to do. It was very hard for me too. It made me feel like a different person. When I think of myself before I had cancer I feel like I’m a lifetime away from who I used to be. Not just my physical appearance but everything about me has changed. I just don't recognize myself, in the mirror or in my mind. It’s not all bad either. I feel like somewhere over the years I had lost myself. I had lost a big part of my sense of humor, my youth and my faith in God. Having cancer has helped me find myself again. I guess I have gone through a ton of trials in my life but nothing close to as tough as this. Nothing has shook my world enough to make me look at myself and figure out who I really want to be or has made me look at myself and say “Who did I use to be??” So in a big way this cancer is a blessing. I no longer question myself or question everything I say or do. It has given me back the self-esteem I had lost. The thing is I have no idea what caused me to lose all those things either and right now I am in the process of trying to figure that out. I mean I've always been myself around the people I am close to I guess but my problem was being COMPLETELY guarded and insecure around people I didn't know really well. Part of that is normal I guess but I became way too guarded. So yes, it is horrible that I am going to probably be bald for the next year but I am looking at all the things that I have gained already and it is totally worth it! I am going to LIVE!!! I’m going to watch my daughter grow into a beautiful young lady. I am going to be a better wife to my husband. I am going to be a better sister and friend. Most importantly I am going to strive to be a better Christian! I am going to live every day as if it were my last and tell the people in my life how I feel and not hold things in anymore! Life is too short to be unhappy, prideful or negative!

I bought a bunch of fabric on Friday to make scarves because I knew I was going to shave it that night. So I dropped my husband off at work after having lunch and happened to stumble upon this tiny little fabric store. The owner was this sweet older lady. I told her my situation and bless her heart, she was so helpful and gave me a ton of fabric for very cheap. She was definitely a God send. She helped me figure out how much I would need for each scarf and gave me some tips also. I almost forgot to mention that Gary bought me a beautiful antique sewing machine for Mother’s Day! So that’s what I will used to make my scarves and help with my headband and bow making. It is a 1951 Singer and it still works! Those old machines are like classic cars….they run forever! They are built so great that everything on the machine is pretty much fixable. I love it. I guess most people would want a brand new machine but I love old things. I would take an antique over something brand new any day of the week. They just have so much character and my husband knows that about me so that’s why he knew it was the best gift!

I had a beautiful first Mother's Day. We got up and had a wonderful breakfast and took a drive and looked at a bunch a beautiful homes that we could never afford to buy! It was fun! Then Gary, Presley, our dog Mason and I all went for a walk. We walked to the shopping center near our house and got a couple lattes. Gary got a cigar from the shop next to Starbucks and while he was smoking that I went and walked around with Presley. I went into the Christian book store and bought a book that talks about all the amazing women in the Bible and their struggles. I think it will be good for me to read. I know I'm not the only women going through a hard time so it will be encouraging to read about all their trials and how their faith got them through. I am living off faith right now!!

Presley is the most amazing baby. She slept the entire time we were out today. As long as I kept that stroller moving she was happy. I and so blessed with the perfect baby. She pretty much entertains herself already. The only time she cries is if she is hungry or needs something. She gave me another small chuckle today but not a full laugh. I am still working with her! It's so sweet, when I am feeding her she just started to play with the bottle and has been putting her hand over her face when she's sleeping. It is so cute! Some times I swear she is trying to hold that bottle by herself! I do feel bad though because for some reason she doesn't like when Gary holds her. I don't think it's anything Gary is doing other than the fact that she knows when I am not holding her. I know it hurts his feelings a bit but I keep trying to tell him it's totally normal. Another thing is that this is Gary's first time really being around a baby and he is just not as broken in when the babes. It's like babies know when someone inexperienced is holding them. I think over the next month or so she'll come around and maybe stop being so fussy with him. She is just going to fall in love with him when she's old enough to know he's her daddy.

Before I go I wanted to share a poem my older sister Alexis wrote for me after I told her I had shaved all my hair off. It's so beautiful and is something I will always cherish.

I'm Blessed to Know You

I know You,
young and full of life
bright smile and catching laughter
rare as a hand held star
heart like the moon
on a cloudless night

You are still the same
though hands hold now, quite different things
rare to most human kind
we don't walk by the same beaten drum,
you set the beat for us all now

You will always be full
full of the things that summer brings
cool breeze under a shady tree
fire flys in mid-western states
the sweet air of a Squaw dusk
a walk through the meadow
picking flowered bouquets

I know right now you say
"I feel like a different person"
and it may be true
Just know that while everyone
is lost in the worthless things
you are seeing with eyes opened by God
What most of us will never know
and after all is said and done
you will be the wiser and this will all be over.

Thursday, May 6, 2010

Summer is my favorite time of year!

Presley in one of her headbands!

Well, tomorrow will be exactly 2 weeks since my first treatment. Feels so good to be further away from that day. I'm actually feeling so much better than I was last week. The fatigue is still pretty bad but at least I'm not having to take my anti-nausea medicine as much. But the bad thing now is my hair is starting to fall out. I've been staying at my mom's for the last few days just to hang out with my sisters and the last 2 nights my hair has been progressively getting thinner. It's mostly just annoying to see your hair falling out all over the place. Every time I looked down I would see my hair on my clothes or on a pillow or on my daughter!! So I got up this morning and decided to just go get another haircut. I'm not quite ready to shave it yet so I just cut it really short. It feels so much better already because I'm not seeing my hairs everywhere and I don't have to keep it back in a ponytail at all times, which was making my head really sore. I haven't told Gary yet so he's just going to have to see it when he gets home!I know everyone said it would be the hardest part and it's true. Watching my hair fall out before my eyes is like a bad nightmare. I really can't imagine it all going. I'm very thankful for all the blessings, like the fact that I'm in stage one, so I'm trying to focus on that. But it's definitely a challenge not to get upset and feel emotional about it. I'm really dreading my next treatment. I just know that it's going to probably be worse than the first and I'm just so enjoying feeling better!
I went on a walk today, it was so beautiful and sunny out. I just really want to enjoy this summer because I truly HATE winter! I just know it's going to be here before I know it, so I want to make sure I get every bit of sunshine I can. Our community has a pool so I can't wait for that thing to open up! The doctors said I need to be careful being out in the sun with all the medication I'm on but still...I'm going anyway! We went to the Gold Cup last weekend and I was outside for most the day and it didn't seem to bother me. It was so much fun. We watched the races of course but it was great to be sitting outside, drinking a little and enjoying the day. We went with one of Gary's friends so it was fun hanging out with them and of course, Gary drank a little too much! But it was still a great day. What it is it with men and the fact that they have no limits?? My husband is the worse! It's so funny because you always know when he's had a little too much to drink because he gets a mean case of the hiccups.
Miss Presley is getting so active!! Still not laughing but she's making a ton of noise and cooing a lot. I've been making her a bunch of headbands and bows for her hair. I'm actually starting an Etsy shop and I'm going to make things to sell on there. Etsy is like a Ebay for homemade things. So you take pictures of whatever you make and try and sell them. So far I've mostly done headbands, bows and hair clips but who knows..I might try clothes at some point. When I was in high school I used to sew so I'm thinking of buying a machine and picking it back up. If my shop actually does something and I actually sell some things I am going to donate a portion of whatever I make to Lymphoma Research or just Cancer Research in general. So I am excited about that!