The weekends aren't what they used to be,,,

 Sunday, April 26, 2009 4:38 PM, EDT
Sunday: Woke up to my baby girl laying her head next to mine whispering "mommy,I'm awake. Are you gonna get up?" She climbed into bed for a few moments (love those morning moments;-). I did get up~praise the Lord~ feeling hungry but good. I then got dressed and ready to head off to church with my little Church-going Girl. Half way through my mind being made up to go and basically 'sucking it up', I began to feel my inner voice saying that I might not make it through service physically and as hard as it was to give into that voice I knew in my gut it was the right thing to do (taking care of myself at every and any given moment is what I must do-no matter the sacrifice! So my mom and I dropped Jessie Girl off at my friend's house and she went with them instead.  I tried to hold back the tears and was hoping she didn't notice but I think she did for a quick minute, so I shrugged it off and acted goofy instead and gave her a hug and a kiss and ran to the truck where the waterfall came crashing down! Darn! I just wanted to go to church with my daughter!  I just miss it being me and my kids!!!! I miss having the control over our days together. After the wonderful day I was able to have with her the day before it made it a little harder letting go today. Well, after that release, I came home to smother Joey  with lots of hugs, kisses, and "I love you forever and ever Amens".  He was good about it~kind of like God had prepared him for it before I got there because he was more tolerable and accepting of my overdose of mommy hood;-)

Physically my tongue and mouth has hurt worse today than any day.  A really bad stinging sensation across the top of my tongue. So yes, I am starving!!!! Everything looks so scrumptious! I managed to get a shake, tomato soup, applesauce, and tea down with my miracle mouthwash and some broccoli and cheese soup is on its way.   I cannot wait to chow down on some real food!!

I finally got a few minutes to myself this afternoon to just watch some shows and just be. Back to "work" tomorrow! Live Laugh Love and be strong!

Day 9, I think...

Friday, April 24, 2009 6:22 PM, EDT
Day 9: Day 9 right? Lost track for a minute. So to make a long story short I finally slept normal for the first time last night!!! Only got up once to pee and right back to my wonderful sleep!

Rachel took me to radiation today~"I hope seeing me will help you sleep tonight Rach-please please do not worry about me.  Don't worry 'bout a thing, cause every little thing's gonna be alright." Remember, right now I don't know any different and I'm doing what I need to do.

After radiation I came home and enjoyed a cup of tea on my neighbor's porch. Oh, God is so good! Then enjoyed the afternoon with my girly girls. Thanks Lesley,Sarah and Tania-love you lots;-) Had an early BBQ~never ate a burger in such tiny pieces before but whatever it takes to get it down! After a late lunch enjoyed a game of Skip-Bo with the girls. Oh, God is good alllll the time!! And the winner is....Kylee! LOL Kiddos came home, took baths, had supper that ladies from church brought~thank you to so many who have given their time and efforts. And then my favorite part of the day was sitting on the couch with my Joey and Jessie and my Todd~coloring and listening to funny hockey songs. It was a glorious day!

It's only Day 8?!!

Thursday, April 23, 2009 6:30 PM, EDT
Day 8: Wow! it feels much longer and much more than 8 treatments, but that's okay! Today was a great day!

My mouth is filled with sores lining the outside edges of my tongue, under my tongue and down throughout my throat and one hurting lymph node! But I had energy! I got up, enjoyed some time in the early hours of the morning (yes, early hrs~5am) with Joey and shortly after Jessie and my mom as well. Was a nice morning~had to explain to the kids that Mommy might be doing some of her own sign language when hurts too much to talk~but they understand babble better than anyone so we were good!;-) A little emotional string was tugged when I spoke up enough to let my family know I could not talk much and when I do it's slurred and doesn't sound like me~and then hearing myself felt like I was listening to a stranger within, but shed the couple of tears and enjoyed the day NO MATTER WHAT!

My left lymph node in the groin area hurts quite a bit after treatment yesterday and today making it tough to walk (I might be a bit slower now Wanda and Nellie if ya wanna go walking~just teasin'. Love ya) The day was good. My sister and my nieces came to visit along with with my Aunt Laurie and Aunt Tammy (two of my mom's sisters) and I cannot forget my cousin, Katie who entertained the kids alllllll day! "Are you tuckered out, Katie Girl?" Love you and thank you for that~the kids adore you;-)

It was no accident that I felt well today walking into treatment. The older gentleman that is usually there at the same time as me came in and sat down. He asked how I was and of course in return I asked how he was -there are no "I'm good", "fine thanks" or responses of the sort (unless of course we truly are-we are cancer patients feeling something new and annoying, frightening and nauseating every other day, so there is no need to mask it or try and hide it). He responded with "I feel like shit, oh sorry,  I feel awful." Well, that's another thing I'm learning about cancer~you do not have to apologize for feeling like "shit". If that's how you feel, then you say it. If you feel "awful" you say "awful". To some there is a difference.  Anyhow, I told him to certainly not apologize~I'm not easily offended and to share with brutal honesty. I had noticed yesterday he was not in the waiting area for patients where we usually meet and chat and thought "maybe he's done or hasn't gotten here yet" before I went in and perhaps we missed each other. Well, today was no accident that he arrived in the nick of time before I was called into treatment. Because when he told me how he was feeling he also stated that he didn't come into yesterday's appointment b/c he is feeling awful, nausea, chills and wiped out. So of course I could sympathize and also had been battling this just a day ago~but then I was called in so left him with a sincere "'hope you feel better real soon"'. As I was laying on the table during treatment I thought to my self "not missing a treatment is crucial, even when you are sick and can't or don't want to do it even one more day~ you've got to get there!" And reminded myself that this was a commitment that I made from the beginning~to be at every appointment NO MATTER WHAT! That's easy to say when getting there is still bearable and you have someone driving you everyday...and then I wondered "does he even have someone who drives him to his treatments or does he drive himself? Does he even have a support group, a support person or anyone at all?"  I prayed that he would still be there when I walked back out to change and he was! Again, no accident!   So before I left I asked "do you drive yourself to treatment or does someone drive you?" Of course I was hoping that the answer would be, "oh, no, someone drives me."  But it wasn't. He drives himself to and from treatments so yesterday when he wasn't feeling well enough to drive he just didn't go. So, I just put it out there "look, I have a big enough support group that does not need to be with me all the time and can certainly be shared so if you ever need a ride you let me know and we will get you here. Hope you feel better real soon and I will see you tomorrow."  I hope I didn't just add too much to my family's plate because I am already a handful! We shall see...I want to make sure this man does not miss his treatments and I hope my family forgives me for offering their services to another as though they aren't burdened enough with me. But that is another commitment I made from the beginning and that is to Pay It Forward and let His will be done!

It went downhill from Day 3 real fast!

Wednesday, April 22, 2009 6:32 PM, EDT
I am going to try to go back a week ago where I left off~cannot believe I only got into Day 3 and have already hit bumps in the road...okay here we go~~~~
                     One Week Ago
Started chemo treatment Wednesday. Wednesday and Thursday seemed to be "so far, so good" days. With the exception of Thursday being an unexpected traveling day back and forth to my Oncologist~I had called Thursday morning when I noticed that there was blood in my line (the pump). Was told to 'come on down' and have it looked it. Should not have been blood in my line and they flushed it out and all seemed well. Came home took a nap and woke up to more blood in my line but not only in my line but also around the outside of my port site. Ugh! "What is going on?!" I called the office at 4pm and the nurse said she would stay until we got there. She had to give me a whole new pick line and pump even though it had appeared to be working fine and normal. The only conclusion we came to was that there was a lot of added pressure put on the site when straining to go to the bathroom (constipation was a side affect from pain medication).
Friday the nausea began. Not too bad, but enough to take my nausea medication, which seemed to do the trick. Friday evening I noticed the middle of my chest starting to irritate me on the inside. Didn't think much of it. Woke in the night Friday night several times and finally decided that my chest hurt.  It bothered me most laying down~"of course it did, b/c laying down is what I enjoy to do while sleeping at night!" I made it through the night but as morning approached it got to the point where I just held my chest and prayed for the pain to go away~was a strange feeling because I didn't feel to be having trouble breathing nor did it hurt to breathe so we were referred to the ER by the on-call Oncologist. Arrived at CMMC around noon on Saturday~had an EKG (heart looked good), had CT Scan of chest area which consisted of knocking me out with 50 mg of Benedryl because I had a mild reaction to the CT scan dye once before (wooooo-eeee! that was a close second to anesthesia!). The scan also showed everything to be OK in chest area and blood work came back OK. The doctor mentioned the steroid medication (given before my first chemo treatment) that can cause irritation/infection of the esophagus which was where he believed my chest pain was coming from~kind of like a bad case of indigestion (I guess). Anyhow~we got more medication that helped treat that and numb the area internally. Left the ER around 4:30-5 that afternoon and came home and slept! I could not wait to go the next day to have the chemo pump taken off!

As the day went on I started to slowly feel like I was recovering from the chest pain. If I remember right Monday was an okay day~weak, feeling tired but like I could be heading back to where I was before I started chemo~that would be very welcoming at this point.

There are of course so many little things that have gone on emotionally, mentally and I'm sure physically I have left out due to my mind being fried by the meds and internal chaos. Okay, so Tuesday (the 21st) we met with my Radiation Oncologist after treatment and discussed my weekend and what's new in the world of my mouth! Ugh! So, we (the doctors and myself) have come to the conclusion that other than the infection I am fighting I am experiencing chemo side effects quite early and rapidly~very sensitive to it. Anyhow, back to my mouth~I am no longer able to brush my teeth, skin on tongue, inside cheeks, throat and in side nose has begun to shed and peel~already have sores in my mouth caused from chemo~which of course means more medication. Got some numbing "miracle mouth wash" that helps the healing process and also numbs my mucous canals so that I can eat with less pain. And now taking when it becomes too painful to even talk. And add diarrhea to this, a lovely green~(like the color of a frog-my cousins understand my references to frogs;-).  After leaving my treatment yesterday I had the worst anxiety attack yet~so add another medication to the list...although I have to admit, it felt good to release those emotional toxins.



Saw Oncologist today and definitely have an infection of some sort in the mucous canals and also in GI area (they think it's too early to be having side affects from radiation, but haven't ruled it out since I am already pretty red and sore in the vulva area). So we have a heavy duty antibiotic to fight this infection and try to stay ahead of what's to come next. Just ate at 4:45p and it didn't come back out 10 minutes later so things are looking up! Woooo-hoooo! And on the other end of things I'm talking a little funny either due to pain or numbing the area. But right now at this very moment I'm feeling minimal pain~mostly a lot of discomfort but was able to sit and write this much so that's a good thing.  If I am on here writing then you know I am doing well enough.  Did not expect to only get into day 3 and have so many side affects pop up but there's the update in a nutshell. Going to think about eating, take my miracle mouthwash and then decide if I still want to eat, hmmmmm....

Looking back at Day 2

Wednesday, April 15, 2009 7:02 PM, EDT
Day 2: Mornings are a little bit slow going. I'm one of those that usually opens my eyes, gets right up and starts the day. Not a minute to waste. Well, not-so-much right now and not by choice. The pain meds and now treatments are making me feel a bit "elderly" in the morning.  No offense, but I am only 30 years old so what else can I compare it to! Just one more thing the Lord is preparing me for later on;-)

Once we got one kid off to school and the other off to Memere's house, we headed to my Oncologist's office in Scarborough. Arrived there with only a minute to spare~I was always early for things before~do not like being late for anything~do not like relying on others...oh my poor husband;-)

After checking in I informed the nurse that I had a crew with me today; my husband and parents joined me for my first chemo treatment~the more the merrier (not convinced of that yet, but certainly do not mind~might has well make it a party when we can, right;-) Hopped up on table and got down to business~nurse entered, I sat still and looked the other way~she took her mini fire extinguisher and sprayed my port site to freeze/numb it~adequately stabbed me with a needle which entered into the port that is already attached to my vein under the skin ( this is how they will be withdrawing blood which will be done weekly and how I receive my chemo medicines and any other iv's that would need to be given as we go along.  The minor surgery it consisted of to have put in beats being poked a thousand times in a week and allowed me to do my chemo at home where I wanted to spend as much time as I could.)

At about 9am I sat in the infusion room where patients go to receive their chemo treatments. Me, being one of the fortunate ones today only had to be there for 40 minutes while they prepped me with some anti-nausea medication and my first chemo med. Next chemo med was hooked up to my pump at 10am. This is a pump with a mini IV bag attached that I carry in a little black fanny pack (waiting to be bedazzled by my mom and daughter~a great Nana and granddaughter project to do while Mommy naps;-) This medicine will release itself every 2 hrs at a time in 5-10 min intervals for 4 days (24 hrs a day). I will go to Maine Med on Sunday at 10am to have the pump taken off and my port flushed until my next chemo treatment during week five of treatment. I feel good so far.
We left Scarborough and headed back to Lewiston for my radiation treatment at 11:45. Which was just a bit longer today to mark some areas in my lymph nodes where we want to be sure the radiation is hitting. Then met with Dr. Jones, my Radiation Oncologist, so he could meet my parents who spent a day in the world of cancer~but still my world just the same...Wasn't so bad, was it?

So, as we were leaving my radiation appt my butt started feeling hot like I had just left the tanning bed (I wish~bring on the bronze pleeeeeaaasssse) and I thought "maybe I accidentally hit the button for the heated seat"... After realizing the heat was not on, it clicked! The radiation is working or at least I'm having an affect from it that hopefully means it's working.

 Today was another great day! I even ended it with a nice stroll with my neighborly friends I love so much. They will have to pick it up a notch for the next lap though! Remember, I'm the Speedy one around here. LOL
When I returned home I was welcomed by another friend and delicious chicken pot pie cooking in the oven! Thank you~was soooooo good. Not sure who's enjoying all these meals more~ me or my dad;-)

Now I'm just sitting here wondering if there is a pain med out there that is really going to give me enough relief to sit comfortably~still not working~and that's when frustration begins to build but I will not let the enemy get a foothold!! Live~Laugh~Love and be strong!

Sometimes taking a look back is a reminder you still ALIVE!

I pray for a 3 year old girl named Claire who has cancer, had chemo and surgery.  One day I came upon her page to Caring Bridge~a site where cancer patients and family can share their stories and journal their days.  It brought me back to my very first day of treatment.  I went to my journal entries I had written on this site and decided that I would share them here.  We are not to live in our past nor does carrying our past around with us do much but weigh us down and keep us from living now.  However, simply looking back can be a wonderful reminder of where we are today and in my case, it reminds me I am KEEPIN ON! And I also love to see how I have grown up in the Lord! I post these entries to share my journey from the beginning.  And as I begin to share my story, I ask in Jesus' name that He use my experience to help and heal others.

Tuesday, April 14, 2009 8:08 PM, EDT
Day 1: So I woke up this morning feeling 'excited'! I had to stop every now and then and ponder if what I was feeling is normal or was I confusing it with another emotion, anxiety, fear...as it drew nearer to leaving for treatment I still felt 'excited'. When I walked into the radiation department I felt certain, energized and at peace. I then knew it really truly was 'excitement' that I was feeling. I was anxious to begin the fight for my life! As I grabbed a not-so-lovely johnny from the closet (thinking, "who really cares what it looks like, I'm here to save my life...but if I'm going to be here every single day for 6 weeks maybe there's something I could jazz it up with" and that is when my socks became the opening liner most days.)

The radiation therapist briefed me on what will become a daily routine and said in a casual somewhat routine yet somewhat concerned manner "are you okay?" (I think she was thinking I looked way too happy and way too energized to be there~like maybe I was in the wrong place;-) I said "yeah, I'm excited. I'm ready." She replied, "well, that's one I've never heard before." And then I knew she must have been thinking I had checked into the wrong place! And I thought '"well, you have never heard that before because you have never met me before!")
So, I entered the radiation room filled with calmness and peace that only the Lord is able to bless me with. I laid down on the hard and thin table flopping my legs open into the mold we made last week (I'm pretty sure I looked like a frog bathing in the sun). The peace and calm was so powerful that I was able to fall asleep in less than 5 minutes! The treatment itself only took 5 minutes but I felt like I had been sleeping for 20 and wanted to enjoy the relaxation for at least another 10 more! But since I will be seeing these same people everyday for the next 6 weeks I chose not to argue and 'hopped' down off the table;-)

As I walked out of the room I prayed for the next person that would be laying on the table after me~that the Lord would wrap His arms around him or her and fight their cancer with them as He has been for me! Today was a great day! I enjoyed cleaning my house, cleaning my camper, the fresh air, time with my parents and my children and husband. I may not be this energized tomorrow but I will live~laugh~love and be strong every chance I can!

The Reason for the World by Matthew West (with lyrics)