Thursday, April 29, 2010

Sisters and Steroids

So today was my first day without steroids. It wasn't as bad as I thought. I was just really, really tired. My older sister Alexis was here with me so we went on a walk and I was feeling pretty tired after a few minutes but I think thats pretty normal. I am going to miss Alexis so much when she leaves. She has been AMAZING to me. It's been such a blessing to have her here to laugh with, talk to and just help in general around the house. There is nothing like having sisters. I think in order to fully understand you would have to have one. That's one of my disappointments with all this, Presley won't have a sibling as close in age as I would like. The doctors said with me getting this monthly shot to suppress my ovaries I should have a good chance of having another baby but we'll just have to wait a lot longer than we thought. I have to be in remission for at least 2 years before they would like us to try and have another. So it's a little sad that Presley won't have a brother or sister until she is probably 4 or 5 but I keep telling myself, "Don't worry about things you can't change!" So I'm really trying. I guess Pres and I will just have to be little buddies and I have no problem with that!! I'm going to be the most entertaining and fun mom ever!!

Wednesday, April 28, 2010

Presley my Grace

Today wasn't anything special...I felt okay and life went on. So I just got the desire to write another little poem for my daughter who is keeping me going right now. My love for her overflows with every additional day. She is the most precious gift from God in the midst of a storm. Thank your Lord for her. I am humbled by you and your amazing timing.

I'm quiet as I listen to you breath
And believe that somehow, this isn't a part of me

This waking up every morning to this handful of pills
Always smiling because I have you to keep me still so real

When you're about to laugh my heart turns so very warm
I dreamt of every possibility for you, even before you were born

I love that you were given out of unfortunate circumstances
Lets me believe you'll be just like me, always willing to take her chances

Though so many things in this world will try to get you down
You'll be the one to stand up and fight the few and final round

God must have something extra special for you

To place you in the midst of such a riddle
And It's such a heavy burden for someone oh so little

But I believe God only gives theses burdens to so very few
And I'm glad he gave them to me and you.

Monday, April 26, 2010

A Dream for You, Amen

Today I dream a dream for you
That someday maybe you won't go through
These horrible fears of disease and cure
That steal you hair and take your open door
A mother wishes nothing but beautiful things
For her baby girl sleeping so peacefully
Thinking of dandelions, rainbows and blessings from above
And how Jesus' hand is over us with his abundant love

He keeps you safe and saves me for your future
I love you deeply but only he could know
That nothing steals these moments
Nothing takes me from you
Only he keeps me and all our special memories
Because we both are his children
Safe only in his keeping.

Chemo-Day 4

Me and all my sisters together again last Sunday!! First time in 5 Years!!

It's been almost 10 days since I last posted anything. I went back and read my last blog before starting this one and to be honest..I'm not as uppity as I was then. To be honest I feel like CRAP! I had my port put in on Thursday and my first round of chemo on Friday. The infusions nurse I had on Friday was really sweet. She was an older gal who talked a lot but it was kind of comforting because when you're getting pumped full of toxins it's nice not to be focusing only on that. She was going over all the drugs with me before she pushed them but it was really hard to hear or understand what was going on. All I kept thinking was "there's no going back now." Not that I thought that anything would come up or change so I wouldn't have to have Chemotherapy but it pretty much seemed unreal the entire time. So I finished up that day and ate saltines and drank ginger ale. When I was done I thinking maybe chemo wouldn't be that bad. They shot me full of steroids before they started the actual treatment but as soon as they wore off I started to feel it. The biggest thing is that I don't feel like eating or drinking anything and was very fatigued. Fatigued to the point where lifting my 11 pound baby was too heavy. I came home that night and pretty much just slept and tried to drink as much fluid as possible. Saturday morning I had to head back to that same office, same room, same chair, to get a shot. This shot was to help boost my white blood cells to help avoid getting any infections. They said from day 7-14 I will be hugely susceptible to getting infections. So no cutting cuticles, pedicures, manicures, eating food that has been sitting out and a million other things. So that shot will help with all that. The shot burned pretty good but once it was over it felt better. All in all this first treatment has seemed pretty brutal but I'm praying the next will be better.
On a happier note, Presley has slept 9 hours straight for the last 2 nights!! Gary has been taking night duties so thats been a huge help! He does it a little different than I do. Usually when she wakes up crying and its been about 5 or 6 hours I will feed her because I figure she's hungry. What Gary does is just pops a paci in her mouth and she falls back asleep. It works like a charm so I guess I should have been taking advice from him! She is getting so big. I'm so happy getting to watch her grown and become a little human being. She is on the brink of laughing. She let out a little chuckle yesterday but not enough to call it her first laugh. I can't wait for that so I am working with her!
My sister Alexis flew in from CA last weekend so she has been helping a ton! She brought her 11 month old son Jake and it has been so cute watching he and Presley around each other. Last Sunday my Dad had a family get together at his house and we took a ton of pictures! It was so much fun and for just a little bit I forgot I had cancer and was just enjoying the sunshine and time with my family!!

Little Jake and Miss Presley....BEST COUSINS!!!

Saturday, April 17, 2010

Ponytail Saturday

Today was a pretty awesome day. I had the bulk of my hair all cut off! I'm donating it to Locks of Love of course but I never thought it would be as easy as it was. My sister, Cezanne came down from New York for the weekend to hang out. So we got up, fed the baby, had our coffee and headed out. First thing, take some mommy daughter pictures with Presley before the big cut. So Presley and I took our pictures, I picked out the ones I liked and while we were waiting for the prints, went to chop off all my hair. I guess I thought it would be a pretty traumatic experience but it wasn't. God has given me such a strength that even the things that I used to think would bother me don't. Don't get me wrong, I had my moment and I cried because me cutting my hair makes this all real but in the end, I don't care anymore that I have cancer. I will get through this and it will only benefit me and make me stronger. I don't care that I had to cut 18 inches of hair off my head today, it's only hair and even when I'm bald I will know that it will eventually grow back. My new philosophy in life is 'Don't sweat the small stuff' and hair is the small stuff! I'm just thanking God that I'm in stage one and have an awesome chance of surviving all this. I just want to include a little story about my husband and he LOVED my long hair. He used to always joke that if I ever cut it he would divorce me! Ever since I've known him I've always had long hair. So of course, I kind of worried about coming home and him seeing me with short hair for the first time. When he saw me all he could say was how much he loved it! He said it was a cute cut and a nice change. I really appreciated that because I know he didn't truly mean it...he liked my long hair. So a few hours go by and I'm picking up around the living room and he says "Baby, I really like your hair..just as much I did before." I know he was just trying to comfort me and he was just saying it so I didn't feel so bad. Him saying that just meant so much to me, even if it was a lie. I am so thankful for my struggle.

Friday, April 16, 2010

Tomorrow is another day

Today was a bad day. I don't know why really. I guess this weight is finally starting to feel too heavy. No matter how many times I tell myself, or what the doctors's really hard to believe that I have cancer. I don't look sick, I don't feel sick and I feel like I really didn't have a lot of symptoms. I have an appointment tomorrow to get my hair cut. I think I'm going to chicken out. I figured I wanted time to get used to having short hair, since my hair is passed the middle of my back, before it all falls out but now I don't know. I definitely am going to go get some pictures taken with Presley in the morning. I just want some memories before I get chemo because I know that will take a lot of my energy and of course nobody wants to take family pictures when their hair is falling out! She is getting so big!! It's like today, she discovered how to play with her blanket. She played by herself for most of the day today. She would grab a hold of the blanket with both hands, pull it over her head, kick her legs around a bit and then pull it back down. It was so cute to sit and watch her. She did so well playing alone today I actually had time to clean my husbands FILTHY bathroom. I promised myself I wasn't going to clean it for him because I already told him that I wasn't going after the mess he made! I just couldn't take it anymore. All I can say is men are slobs!! I'm just getting really nervous about how I am going to do all this. Once the chemo starts, which will most likely be soon because I'm having my port put in on Thursday, how will I be able to keep up with this house and a baby?? I know my family will help but they can't do it all. My husband definitely needs to step up. To tell you the truth I'm not sure he will. He's not much of a helper. He has a very hard time doing things around the house. I understand since I'm not working now I should assume most of the household duties but now that all this has happened it just simply can't be that way. I guess my sadness today is attributed to all those thoughts. If I can't even get my hubby to pick up after himself in his own bathroom, how am I going to get his help anywhere else? I'm not trying to bash my husband because we all know men aren't much for cleaning but this is special situation where he is going to have to learn and learn fast. I'm thinking of calling a Therapist that I have spoken with a few times and making an appointment for us so we can get a plan in motion for how we are going to deal with life while I'm having chemotherapy. Bottom line, either I get more help or my mom is going to be seeing a lot more of me around her place!! ha ha But seriously, I will do it.
Writing has been so therapeutic for me. Just sitting down these last few minutes and writing about the joys and frustrations of my day has helped me to realize how blessed I am no matter what I'm struggling with and has really helped me think of solutions for things in my life that need work. The more I blog...the more I like it!

Thursday, April 15, 2010

Good Morning, Biopsy

Today has felt like such a long day. My sister Casandra came this morning to help me since I had my bone marrow biopsy procedure. My appointment was bright an early at 8:30 and of course, we got out of the house late...then traffic. So I was about 20 minutes late to my appointment. We decided to take Presley along since we were going to try and get her blood work done too. I guess I should explain why she needs blood work. I didn't even really want to talk about this but I guess I will. Obviously, I had cancer during my pregnancy and like any mother would be, I am concerned about how that may have affected my daughter. I spoke with my oncologist last week and he said not to worry about it and that it would be extremely unlikely to the point where it would be 'reportable' if something like that were ever to happen. I guess the only cases they have found cancer to pass to the child would be in a mother who had extreme melanoma all over her body during pregnancy. Either way, I just wanted peace of mind. So I expressed my feelings to my pediatrician and to ease my worries she said I could take her for CBC. So that's why I was going to get her blood work done. Now back to my appointment, the bone marrow biopsy. Not as bad as you might think, pain wise. Mentally, it's pretty bad. For me it was the anticipation. So they do the procedure in the office and takes no more than 20 minutes. At first they tell me to lay on my stomach and I have to fold my jeans down just enough to where they can get to the top part of my hip bone. They clean it off with Iodine and give my Lidocaine to numb the area. The pain really wasn't that bad except for when they were extracting the marrow. Even that was just a quick shooting pain and then it was over. The absolute worst part is when they are putting the needle in and pulling it out. They have to put two different needles in at two different times. To me it was just more of a psychological thing than pain because you can feel them trying to get the needle into the bone and all you have is your imagination to wonder whats going on behind your back! All I can say is that if you ever have to get one done DO NOT watch the YouTube video on it being done first. I just watched one and it's much better not to have a visual until after it is done. All in all not bad but I guess compared to labor pains nothing is... just another way Presley has been a blessing in all this! I'm just glad it is over. They said it will take a few days to get results and I am just having faith that this will all be fine. I am so tired right now and Presley is sitting here on my chest sleeping while I'm writing. I think I will join her! It's been a long day and I will sleep well tonight knowing it's all behind me. Tomorrow is FRIDAY!!!

Wednesday, April 14, 2010

Pres and I are both getting stuck with needles this week :(

Poor baby Presley had her shots today!! Our appointment was at 8 and since my hubby and I only have the one car, instead of dragging Presley out super early to take him to work, I decided we would walk. We live in a little community and the center where her Pediatrician is like 5 minutes away. So we had a nice little walk but it was a little chilly this morning. This was my first time going to this office, it was pretty nice but I didn't like how the nurses think they can just go and pick up your baby and pass her around the office like a little rag doll!! It actually worked to my advantage because she was screaming at the time I was trying to fill out paper work. So one of the nurses just came out from behind her desk and unbuckled her and brought her back to show her friends. Not that I'm judging and I know they all mean well but it's just not something I would do. Either way, it was a really nice office and I think we'll stay there. I really can't believe how many shots they have to get at once. 4 of them! It's all for her own good but geez! I hated it! The nurse told me to hold her arms down while she gave her the shots but I made sure to stand behind her so she didn't see my face when the lady was sticking her. I was afraid she would remember me letting someone do that to her and then hold a grudge against me for the rest of her life! ha ha I know that's stupid but just didn't want to take the chance. She screamed her head off at first but once I picked her up and held her for a minute she settled down. I did have to give her some baby Tylenol when we got home cause she was pretty fussy after. It so horrible to see her cry.
Tomorrow...Bone Marrow Biopsy. Not looking forward to it. They said it's painful but not that bad. I just have a hard time believing that. They stick a needle inside your bone and suck out a little of whats in there. I'm just trying to figure out how they break through the bone? Actually, I don't really want to know because then I will be much more afraid. My husbands friend who is a Nurse Practitioner said that I shouldn't be afraid because childbirth is much worse but I was more afraid of the epidural when I had my girl than the actual labor pains! I was induced and I think I went a little over 3 hours with contractions so that might not be saying a lot but we'll see. I'll let you know. What I am forgetting to say is that we got some great news at the doc yesterday!! They are categorizing me as stage 1 for now, so I have a really good chance of being cured!!! The PET scan didn't show that it had spread to any other part of my body and as long as everything comes back okay from the biopsy tomorrow they will keep me there. Now I just need to prepare for the Chemotherapy. The kind I am getting is called CHOP. I will go in once every three weeks...which doesn't seem too bad. I will get anywhere from 4 to 6 treatments and maybe some radiation around the area. Doc said they can control my nausea pretty well but I will feel some fatigue that will worsen with every treatment. My hair will be falling out too. :( Oh well...I am going to donate it! I have had super long hair since I was a kid so it's going to be tough being bald but when you have cancer none of those things seem to matter anymore. I just want to get better and get on with my life!!
I'm really excited because my 2 sisters are coming into town this weekend!! We're going to try and have a girls night out maybe Saturday. We always have so much fun together. We laugh about everything! I think the last time we were all together was my wedding in May 2008...way too long!!! This is a pic of a few years back when we went to a Giants game in San Francisco. Alexis is holding her daughter Kayley on the right, Cezanne is in the middle and I'm on the left.

Tuesday, April 13, 2010

First time blogging...while Presley sleeps!

Getting diagnosed with lymphoma isn't a quick and easy process. I didn't just wake up one morning with a lump, have it biopsied and get the results the next day...oh no. Getting all the answers was a very long and difficult process and I still don't know everything. So I guess I should start my blog with explaining how this all went down. And it did start with a little swollen lymph node under my left arm. It was there for about a week before I gave birth to my little girl, Presley. It's pretty common to have a lymph node swell due to some type of infection. That's what lymph nodes do, they let us know when we've got something going on in our bodies. So that's what all the doctors pretty much thought...infection. On February 11th, while I was in the hospital having Presley they gave me some antibiotics, which seemed to help but it continued to stay enlarged. In the weeks following her birth not only did it stay enlarged but it was GROWING and extremely sore. I called my doc and let them know and we began to think maybe it wasn't even a lymph node. Maybe since I was breastfeeding what I had going on was just a clogged milk duct! It made sense since we do have breast tissue that extends into our underarms. So I applied some heat with massage and took some Advil over the next few days to see if that would go. It just kept growing! Not to mention started to become extremely painful. So then I began to worry and made an appointment with my doctor right away to have them look at it. The next step was an ultrasound for what we still thought was a milk duct that had maybe turned into an abscess...lymph nodes just don't get that big! Now it’s Tuesday, March 16, I'm about 5 week’s post-partum and this is where it all got really scary. I went in for the ultrasound. It wasn't fluid filled; meaning not a duct and not was a lymph node. Next step, they do a mammogram....nothing in the breast causing this node to swell, such as infection or cancer. Right after the mammogram the tech calls me in and tells me that the doc wants to sit in on another ultrasound so she can have a better look. At that point the Doctor pretty much leads me to believe its cancer and that I need to deal with this IMMEDIATELY!!! Luckily, I had my follow up appointment with my OB/GYN in an hour so they sent the results to her and she would tell us where to go from there. So…we see my OB/GYN that same day and she orders an MRI and gives us the positive spin on the whole situation, saying she’s not convinced that it’s cancer and “Let’s not worry until we have to.” I want to say what a blessing it has been to have her as my doctor. Through the whole process of finding out what this was, she has called me continually to check on me. Sometimes on her personal phone or nights after she has already left the office. She's amazing! So we get the results from the MRI a couple days later, which tells us that it's definitely a lymph node and there are others surrounding it that are inflamed. Next step...surgeon. So it's now Thursday and we have an appointment set for the following Tuesday, March 23rd with the surgeon. By Friday the thing has almost doubled in size. With advice from my doctors we head to the emergency room because there is just no one in the surgeons office to see us and I’m thinking I just don’t want this thing to burst. So of course we wait in the ER for about 5 hours on a Friday night, they do some blood work, give us some antibiotics to try to get it to shrink and send us on our way. Now Tuesday rolls around and not only did the lump not shrink but now the skin cover the lump has begun to get really sore and become an open wound. I go to the appointment and as soon as the surgeon lays eyes on it he said "that’s got to come out." So the next afternoon, it did. All they could tell us after the surgery was that the mass was "abnormal" which we already knew!! So about 12 days later on April 5th we get the results....LYMPHOMA. Anaplastic Large Cell which is in the non-Hodgkin category. I was home alone, holding Presley when I got the news. When I looked at her I started to cry. I hadn't really cried about all this before then. I had been strong and extremely positive and in the 12 days of waiting for results had told myself "if it were cancer they wouldn't take this long to get the results to us." But I was wrong and to be honest I had a feeling all along that it was cancer but just didn't want to say it out loud. Presley is so tiny and needs me...all of me. Not just what I can give her in between appointments with doctors and chemo treatments. How the heck am I going to do this?? Sure I have a ton of family and friends to help but I don't want to miss out!! I want to be there to take care of her every second, I want to continue breastfeeding her, I want be a mom to her...a mom without cancer!!! Today is Tuesday April 13, 2010 and I have an appointment with my oncologist at 4:30 to get all the details; what stage I'm in, how much treatment I'll need, how long I'll have to have treatment, my chances of having another baby after chemo and I'm sure a million other things that are going to be hard to hear. I guess I could be asking God, why me? Or I could be mad at him...but I'm not. I know God doesn't promise me that I'll have a perfect life just because I believe in him. All I know is that he has blessed me beyond measure the day Presley Grace came into this world and no burden can ever come close to taking away the joy I have in her. So that's what this blog will be, an account of my life with Presley…everything she will be doing in this first year that is going to be amazing and my battle with Lymphoma. Since I'm going to have a lot more going on this year than I thought, I don't want Presley to get lost in my medical issues. So I will keep all her memories here for her in case I'm tired and don't remember as well as I should. I’ve never written a blog before and to be honest never thought I would but I never thought I would ever have to battle with cancer either!! So I guess 2010 is a year for things you’d never thought you do! So this is the beginning of Lymphoma and Lullabies.