Friday, May 22, 2009

Emotional Invasion

I've been so exhausted and busy with doctor appts and just trying to make my body cooperate enough for some mama loving time that I haven't gotten to blog much lately... just real, authentic, transparent blogging-the good for the soul kind of stuff:) The kiddos are both down for naps (God performs such beautiful miracles!!!) and I took a LOOOONG nap this morning after both of them woke up at 5am (normally Ben takes his shower and then does kiddo duty before the 2nd string arrives but I got to pitch in this morning-giving MAJOR praises to whoever invented coffee!!) so I'm jumping at my chance:)

So we know I've got lymphovascular invasion and now stromal invasion but I've been having a bit of an emotional invasion lately. Sometimes they are emotions that I just don't really care too much for. I've had MAJOR awesome feelings of just loving God for all he has done to prepare us for this journey-that has never waivered, and in the dark moments when I feel it start to, I just throw in one of the amazing CDs that a beautiful friend made for me and I get pumped up again.

But lately I've got some anger going on. I don't like anger, its a waste of energy and most of the time totally unproductive. I use to be a VERY angry person-it just wasn't pretty and so I think part of me gets scared when I get angry that parts of that is coming back. I know better, I know anger can be healthy and its HUMAN for everyone to experience it.

Not once has my anger been directed at God. Even though sweet dear friends have given me permission to be downright pissed at him, I haven't. Instead, I'm just really darn mad at the cancer!! If I could see it face to face, I would probably haul off and smack it around a few times (hrmmm note to self-great visual to use during radiation!!). I also despise pity and when people throw themselves pity parties. Guess this comes from my mom telling me from the time I was young, "You are allowed -x amount of time- to wallow and then you have to dust your britches off and get going!" THANK YOU MAMA!! That is ONE thing I'll definitely pass on to my babies (yeah ok so 90% of the stuff I do with my babies is stuff that I once said, "When I have kids, I'll never..."). I am trying not to waller (love ya, Miss Jan!) and I definitely do NOT want a darn pity party but sometimes that anger just creeps up and I have to go ask Ben for a "Ben hug" (God's awesome medicine for just about anything) and sometimes use up a few wads of Kleenex.

What am I angry about? (I'm famous for lists LOL)
  • From the moment I was diagnosed, I hated the thought of my family having to experience all of this for one itty bitty nanosecond. If I could just go in, get the stupid cancer out and be done, that'd be perfect. But nope, we are a package deal and we go through the good, the bad and the downright ugly together. So that means Ben pretty much has to be a single parent at times-I can't lift anything over 10lbs and Hunter is quite the chunk-o-munk (we have devised a way that I can hold him and feed him-pure blissful Heavenly moments!!!). It means when the kids get up at 3am and I'm still dopey from pain meds that he has learned how to operate on zilch for sleep at work and still come home and manage to muster up energy to wrestle with Bella (she LOVES her Daddy afternoon time) and tickle Mr. Man with his whiskers. It means that my sweet little girl has alot more not so sweet moments lately. We're gonna have to retrain her how to be a 3yr old when its just us again-MAJOR attitude, more than just the normal toddler junk, and acting out alot, which is totally normal for a chica in her shoes. She cries, "My mama gone" anytime I go to the doctor, and begs through tears to sleep in mama's bed (we have held firm on this one!!!). It means potty training has totally been thrown out the window. No playgroups cuz I can't even begin to find the energy to get all 3 of us ready, out the door and still be awake to drive. I'm angry that my family has to miss out on life cuz of my stupid cancer-I know NOT my fault, I'm not doing that, but I'm still angry.
  • I really struggled before I was strong enough to hold Hunter and feed him. I honestly felt like I wasn't a mom anymore. I know being a mom is so much more than that and that they both still love me and see me as their one and only mama but somedays it just tore at my heart to not do my normal mom stuff.
  • I get upset when I am so exhausted that I can't even sit up any longer and have to call my mom to come help us get the kids to bed. I hate how this cancer just zaps my energy. I'm use to going going going-maybe this is God's lil HELLO WAKE UP you can slow down some:) hrmmm ok, thank you!!! got it:)
  • I'm angry that I lay in bed and worry that the chunk of cancer that is in my lymphovascular system is spreading, that its circulating through all my blood and is just in my body growing and getting stronger. I tell myself its the enemy sneaking into my thoughts but I know as a cancer survivor, I will probably live with that fear for the rest of my life-what if its still there, what if it comes back. I guess the fact that a test (pap smear) didn't pick it up in the first place sorta makes me leery of test results. I just have to put my trust in them and the Lord and know its just all part of the plan. Did I mention I'm a control freak? LOL
  • I'm angry that when its a beautiful day outside and I'd normally take Bella to the pool, I'll have to think twice. I can sit on the edge of the kiddy pool and push Hunter around in his baby float:) I think this summer I'll be the picture taking maniac and love watching Ben wrestle with Bella in the pool and just thank God that I have a husband who is such an amazing father.

LOL totally laughing at myself as I see while I write this blog, I'm finding the silver linings-God's sweet blessings, in each of my lil pity angry moments.

The pity I feel for my family-the anger that they have to go through this-I'm thanking God that I HAVE a family to go through this with me, and know that God is making all our bonds that much stronger as we each lean on one another and find new beautiful meanings to our love. Thanking God for our lil ooops baby that came just in the nick of time, and whose birth actually probably helped us find the cancer sooner rather than later. Thanking God for all the "2nd string" help we have had-from the delicious meals, to Ben's aunts and both our moms. Seriously I do NOT know how we could do it without each and everyone of you!!!

The pity/anger I feel over not being able to do my normal mama stuff-thanking God for blessing me with my babies and being able to be their mama. They make it SOOOO fun!!! They are our greatest blessings and I cherish them and our moments together every single day. Ben reminds me, "Yep, it sucks right now but at least you are HERE, you are alive, and you are getting stronger every day and you'll be HERE for all the great memories and soon enough you'll be exhausted from all the mama stuff again." Thank you Lord for my beautiful husband!!!

Thank you God for showing me I don't have to be going going going-I might miss out on something like picnics in the front yard, or watching my babies splash together in the bathtub, or my husband gently putting ointment on my shark bite (my loverly surgery scar LOL). Thank you God for all of this-even the cancer, because it has brought such beautiful changes and I know after my body has totally kicked cancer to Never Never Land, I'll be that much stronger and that much closer to you. Funny how angry ol me who wasn't gonna throw herself a pity party (HAHA fooled myself at least), ended up throwing you that many more praises. Thanks for shining your big ol light when I get a little lost.

Tuesday, May 19, 2009

Radiation Gameplan

I will be undergoing external beam radiation therapy to the pelvic region. VERRRRRY thankful that I do NOT have to do brachytherapy which is inserting cartridges internally. It will be 5 days per week for 5 weeks. I have my mapping CT scan tomorrow morning so I'm hoping and praying we can get started next week-I'm ready!!!!

Final path results which determined need for radiation therapy:

  • Cancer went 11mm deep and this ended up being greater than 2/3 of the total cervical tissue (figured as much since it probably started growing when I was 18 wks pregnant with Hunter if not before... he is now 5 months old so thats quite a while to grow. Choosing to pray for the doctor that saw this growth at 18wks, ignored it, along with all my bleeding throughout the entire pregnancy and ignored it during my 6wk post-partum appt as well as brushed off bleeding heavily continuously by the time Hunter was 4 months old. Also praying for ALL of her patients that have no clue what type of doctor they are dealing with. Unfortunately my medical records from her office have been clearly altered to show absolutely no mention of the polyp, no bleeding during the pregnancy-barely mentions my various hospitalizations or ER trips, and nothing post-partum. It does show that the records from each of those visits had been electronically opened during the past week which confirms this. So just giving her and all her patients over to God because there is no more I can do with it at this point.)
  • Cancer had invaded the lymphovascular system.
  • Cancer was 3.3cm in diameter.... 4cm is considered large, so it was "large" but much closer to large than small.

I'm at peace with this and just ready to get going. Radiation has been shown to reduce the chance of recurrence in half so I'm game!!!!

I'm exhausted (think all the time in the sun the past two days has just depleted any energy I had). I won't be able to spend much time in the sun nor will I be able to swim until my radiation areas have healed. Not exactly great timing for that since both kiddos thrive outside and Bella has a blast at the pool but we'll figure it out as we go:)

Love ya! D

Tuesday, May 12, 2009

Radiation Update

Met with the radiation oncologist this afternoon-most definitely my fav doctor so far!! He is incredibly smart and does not even think about leaving the room til he has asked at least 3 times if we have any more questions-MAJOR points in my book!!

There is alot more we know and alot we still don't know (told Ben I'm gonna become a professional wait-er and make millions!!).

What we DO know (best listed first):
  • I'm still stage 1B1-awesome news!!
  • Pathology on lymph nodes all came back BEAUTIFUL and clear!
  • Pathology on all the organs removed came back BEAUTIFUL and clear!! (except the obvious cancer in the cervix)
  • Size of lesion was 3.3cm
  • Lesion went 11mm into the cervical tissue
  • Clear margins-AWESOME!!
  • No parametrial involvement
  • There was lymphovascular invasion (UGH I am NOT liking this "invasion" word... gonna have to come up with a prettier term!). This means that the cancer was found to have started moving into the vascular system. In layman's terms, there are all kinds of tubes coming off the cervix. Each tube also has little knobs (aka lymph nodes). Basically its like plumbing-the tube has started to get clogged with some cancer but they don't know if any of it broke off and has gone further into the blood system or if its just a small clog. I do NOT like this one iota cuz I just sit there and think, "Ok so if it is in the vascular system in that area, and blood runs all thru my body via the vascular system, what is stopping it from going all over the place?" Answer-we don't know. PET scan and CT scan didn't show anything.

What we do NOT know:

  • Stromal invasion: we know how deep into the cervix tissue the cancer went (11mm) BUT we do not know what percentage of the total cervical tissue it comprised. In other words, if my cervical tissue was 22mm thick and the cancer went 11mm deep into it, then it took up 50%. Dr. Smith was going to call the pathologist and get them to do more research and determine how much total cervical tissue there was, so we can find out the percentage.

What all this means as far as radiation gameplan:

  • There are 3 criteria that they use to determine if women with stage 1B1 cervical cancer who have had a radical hysterectomy need to have radiation therapy. If a woman meets 2 of the 3, then radiation is recommended:
  1. Lymphovascular invasion-I have
  2. Size-the criteria they use is 4cm=large. Mine was 3.3cm so it was not "large" but closer to large than small or even medium. So kind of a half point for that one.
  3. Stromal invasion-if the cancer's depth into the cervical tissue is more than 1/3 the total depth.... this is the part we don't know yet.

Sooooo Dr. Smith is hoping to get the further path results back in the next few days, will review my case with his entire team of colleagues on their regular Thursday meeting, and then I call him on Monday to determine where we go from here. If we are going with radiation, it will start immediately per his recommendation, will luckily only be external and will be 5 days a week for 5 weeks. Each treatment takes less than 20 minutes and luckily I can do it in the Bentonville office. Most likely I will go up there around 4:00 and take the kids, Ben can meet us there when he gets off, take the kids home and I can get my treatment and head home in time for dinner:) Side effects are fatigue (my constant companion), increased frequency urinating (another companion I already have-gotten kinda use to that having been pregnant, recovering from CSection, pregnant again, another CSection, and then hysterectomy.... you come to appreciate catheters LOL), and loose stools (TMI, but at this point that would be a welcomed relief!!!). He said my blood counts will drop around 6wks after treatment so we'll have to keep a close eye on that since I'm anemic already-knowing me I'll just faint alot and have to eat extra salty foods-no biggie. BEST side effect-cuts chances of recurrence in half!!!!

eeeek "Super Bella" (naked, post-bath Bella running thru house with her hooded towel aka cape on) screaming for mama... more later

Wednesday, May 6, 2009

FINALLY an Update:)

Sorry for being a slacker-I've been a bit drugged, exhausted and sore (and slightly unmotivated LOL)... BUT I got my catheter and staples removed yesterday so today is a new SUNNNNNNNY day!!!

Overview of the week:

Surgery Day-Don't remember too much (thanking God for making our brains be protective of memories that aren't too beautiful). We got to the hospital super early and I was sent back to do all the final pre-op fun stuff (IV, lovely blood clot prevention hose-everyone should get a pair!!, and in my pretty surgery garb). They let my family come back and give me loves before they wheeled me off to LaLa land. The last thing I remember is the anesthesiologist telling me they were giving me something in my IV that would make me relax and then they'd give me the heavy duty stuff in the OR. Obviously relaxed me ALOT because I don't remember the rest:) Luckily I don't remember waking up because apparently it wasn't pretty-they had to heavily sedate me because I wasn't handling the pain very well (told ya I was a wuss!!).

Poor Ben and my mom were about to rip the walls down. My surgery lasted less than 3 hours and the doctor came out to give them a great report and said they would get to see me in about an hour. 4 hours later they finally moved me to back to Pre-Op so they could see me. I remember the nurse saying, "We're going to let your mom and husband in to see you because we can't hold them back anymore." and I thought, "Well I don't care if they see me in a hospital gown-they've seen me in worse." thinking that they were worried about privacy (good drugs).

Apparently I decided to be Miss Independent and refuse nurses' help and moved myself from the operating gurney to my hospital room bed LOL:) I slightly remember that-I wasn't in any pain and saw no reason for them to need to help me. Definitely not having any trouble with the pain at that point!!!

The rest of the hospital time is kind of fuzzy and all sort of runs together. I remember the nurses coming in after my mom and Ben had left for only a few minutes and they got me moved to the chair-I bawled because I got lightheaded and was scared because Ben wasn't there and the nurses just left the room. Gotta love the immediate menopause hormones!!!

My family was SOOOOOO awesome!! They fought off the mean nurses, rallied around the nice ones, kept my ice chip cups full, and always made sure my gown was closed in the back when we went for walks. I was on the floor with the geriatric patients so I had races with all the old men:) I was so blessed to never have a moment where I was left alone (other than a few tiny minutes when people needed food breaks)-my family was great. I was surrounded by Ben, my mom, Papa (and I KNOW Nana was in the room every single day!! Handing out gold stars to the good nurses), my dad, Ben's mom, my babies each day, and my bestest Aly who came up from Texas to be my awesome nurse (LOVE YOU forever my friend!!!), and awesome awesome awesome visitors and sweet phone calls (once they finally put a phone in my room). Thank you everybody that came to see me and my family, and kept our room alive:)

My doctor came to check on me each morning with his sweet nurse and came in on Wednesday with awesome news-my path reports all came back CLEAR!!!! No cancer in the lymph nodes:) He was worried because one of the lymph nodes was inflamed but was happy to report NADA!!!! He also felt my liver and other organs and said everything felt great!!!! PRAISE GOD!!! Thank you for the prayers felt from everyone-we did it!

Ben's aunts and dad have been here this week helping us keep the fort running (my mom and Ben's mom, and his other two aunts kept it running last week and did an awesome job-it was so peaceful knowing I didn't have to have a single worry while I was gone), and we've been so blessed that they will be here for the remainder of the month!! I'm still not able to pick up Mr. Chunky Pants (my boy grew while I was gone!! And seriously, 10x more handsome-as if that was even possible!!!) and my lil angel diva is too busy for this gimp so its wonderful to have all the extra hands and know I can take the time I need to heal. Thank you again to everyone that has been bringing meals-they have been soooo delicious and fill our tummies!!!

I have my post-op appointment with the radiation oncologist on the 12th to review any possible radiation gameplan (at this point it will most likely be sweet and short to just ensure we zap every single cancer cell that could possibly be hiding anywhere, and then prevention since the radiation will cut the recurrence rate by 50%-I'm game!!!). My post-op appt with the GYN oncologist (my surgeon) is the 28th. I was thankful to get rid of my "zipper" (staples) and "tubies 'n' bag" (my catheter) yesterday-moving around ALOT easier, and Bella even said today, "YAY no more bag for Mama!!!!" She is my little sunshine through it all and Mr. Man never stops smiling-the good Lord knew exactly what we needed when he blessed us with these babies!! Ms. Thang keeps us on our toes and doesn't allow any wallowing (everyone needs an anti-wallowing princess in their lives!!!) and Handsome Boy wakes up with a smile that takes up his whole face and doesn't stop til he decides there is a tiny speck of empty spot in his tummy that must be fed faster than pronto:) Its going to be a beautiful Mother's Day this year-thanking God for all the mama joy he has given me and my family.

Gonna go soak up some sun with my lil miss!