In the multitude of my anxieties

Tuesday, January 24, 2012

THINGS HAPPEN!

YUUUKKKK's been the word of the day for several days now.  Today I'm trying to act alive and somewhat motivated.  As planned last Wednesday we arrived at the Morsani center for my surgical procedure to replace/or adjust my chemo port.  They always do a wonderful job of making me feel comfortable, getting things moving quickly and being friendly.  Dr. Cox was ahead of schedule and after signing my chest like a rock star (his words) we got things moving.  I was in Twilight land, but during surgery he used the C-Arm on me, something I had just gotten to learn in my brief month in surgical rotation before school was halted.  The C-Arm is a portable fluoroscopy device they use for x-rays purposes during the middle of some surgeries.  He used it to watch and see why the current port was not flowing through properly.  I've become quite the radiology patient lately...things are a little backward!  He opted to replace the port and for a couple of days it was very sore.  He said he hadn't had to replace one in about 7-8 years.

STRAIGHT TO CHEMO the next day on Thursday.  They compassionately left my port accessed (left the  needle in and the little wirey, hangey things dangling down) so that I would not have to get stuck again at chemo.  YAH!  Rejoice in all things!  First night, not too bad.  Since Friday night, feeling quite awful.  Meds do help some, but achy, fluey feeling is the pits.  Waves of nausea too and no energy.  I drug myself up on Monday morning to keep the 8:30 appt. with the lymphedema therapist in Leesburg.  She was very helpful and felt like at the moment she didn't see lymphedema, but that as I already knew, since lymph nodes were taken out of both sides, it would be a constant vigilance to prevent an outbreak.  Even though my brain was quite fogged, I left with some clarity and good information at least.  I'll know what to do and what to look for, but it still stinks....just part of it.

On the spiritual side...my word for lately is that God is a FILTER more often than a FIXER.  I see his hand in my situation and others' situations, but most of the time supporting, undergirding, teaching and loving us through it through people like you my friends and family.  THINGS HAPPEN!  No doubt about it, but I know by faith that God is always good, always faithful, and always sovereign.  My devotion one day in Matthew centered on poor ole John the Baptist getting beheaded.  Just a few verses before, he was with Jesus in this glorious baptism scene where he was mightily used to baptize the Son of God and witnessed God the Father and the Holy Spirit right in front of him.  He must have felt pretty important, huh?  Then verses later, while Jesus is out teaching, John's sitting alone in jail about to be beheaded by evil men.  So much for being a part of the inner circle, right?  How must he have felt.  What  am I saying??  THINGS HAPPEN!  Who am I to demand?  Is it enough just to know that He's there?


 

Saturday, January 14, 2012

PORT ISSUES

LIVING WITH BREAST CANCER, there are going to be really low points and very hard days.  Sometimes they come from one huge bit of bad news or major physical setback, other times they are a result of one medium-sized setback after another, after another, after another that add up until you crack.  Kind of like for us women when we find our purse gets heavier and heavier one receipt at a time, one piece of paper at a time, one more lipstick or pill bottle we've thoughtlessly thrown in there over weeks, until ONE DAY, we say "Wow, this purse is so stinkin' heavy, but there's not anything THAT heavy in there??"

THIS WEEK WAS THE FINALE OF THIS KIND OF BUILDUP OVER THE LAST MONTH.  In other words, I've certainly been in much more pain the weeks following the mastectomies; and certainly I've been in much more mental strain, the weeks after diagnosis with all the unknowns of my prognosis.  But this week was a different kind of hard.  As I'd shared previously, I've been concerned about the lymphedema discomfort remaining longer term and have taken steps to deal with that including making an appt. for next week with a lymphedema therapist for massage and direction.  The hardest part for me to deal with mentally regarding the lymphedema is that it can be a non-curable lifelong side issue to have to deal with.  With the cancer, you're told, "you can beat this, a year from now you'll be resuming your normal life!" (which I find to be a little overstated, considering the 5-years of hormone therapy pill regimen and all that entails.) But, yes, for the most part you pray that the cancer never returns and move on with your life post-chemo and reconstruction.  BUT LYMPHEDEMA says "hey, I'm stickin around to be a constant thorn in your side".  It might rear its ugly head at any moment you happen to get a little sunburn on your arms, or burn yourself on the oven, fly in an airplane, or even get a bug bite.  Another challenge I'm finding frustrating already going for bloodwork and treatments and surgeries currently ongoing, I can't let them put a blood pressure cuff on my arms, nor let them stick me with a needle except in the hand if they can even get it to draw.  They are forced to draw from my port which requires an experienced nurse, and that brings me to this week at Thursday's chemo.  For those who don't know, a port was surgically placed right near my clavicle/collar bone on the left side of my chest right under the skin.  It stays attached to my subclavian vein so that the nurse only needs to stick the needle each time into the port to be able to immediately access the vein.    

I'LL BACK UP TO THURSDAY MORNING.  Kenny and I revisited my plastic surgeon after three weeks.  Bottom line...at my last appt. with him in December, he looked at my "progress" and determined in his opinion that I had a leak in the left breast tissue expander..  I was shocked and sickened as my sister and I questioned him on the what and why.  He did not do a fill that day and seemed confident in his appraisal of the situation as unfortunate as it was.  He chalked it up to product malfunction and a slow pressure leak that could only be corrected by another surgery to remove and replace the defective expander.  This meant reconstruction would cease and surgery could not be done until all my chemo was completed in May or June.  Then surgery, 3 months of fills, and the final cosmetic surgeries tacked on the end.  Not what I wanted to hear.  So for three weeks I've battled and prayed over this setback, fighting to not feel sorry for myself, etc., etc. ...all while not feeling TOTALLY CONFIDENT in his decision.  Thursday morning, we readdressed this with the surgeon and he agreed that it was based on an experienced "hunch" and we could continue to fill and see what happens since we have nothing to lose.  The leak is only saline water and is absorbed quickly by the body with no harm.  I left there "filled" and sore...relieved and livid...all at the same time.  That's all I'll say on that.  Time will tell.  Then we ate and headed to chemo.

WHEN THEY CALLED ME BACK FOR BLOODWORK, I asked them to draw from my port because of my arms and so they called the oncology nurse to take over.  They had to take me on back to a infusion recliner because at the last two treatments, my port would only work if I was very reclined and arm hanging down to my side.  Even reclined, this time after several tries they were able to draw blood out, but when they tried to push a saline flush in, it was not going, blocked.  Getting a little panicked at where this was headed, I kept offering solutions.  "I can recline more...let me hold my arm lower, what if I shift?...is there a room I could lay flat, maybe that would work?" The nurse lovingly told me that she needed to go talk to Dr. Wright, that this port was obviously malfunctioning and/or in a wrong position (possibly from my weight loss since surgery), but that it was a danger to inject strong chemo meds into my body should they get released into my surrounding tissue.  NOT GOOD AT ALL!  She walked away and I unexpectedly cried quietly like a little girl hoping no one around me was noticing.  Embarrassing.  You want to be strong for your fellow cancer brothers and sisters, though you know they can surely relate on some level with your tears.

DR. WRIGHT AGREED with the nurse and they got me in immediately at the hospital next door for a dye port check in the Radiology dept.  At least it felt like home.  Now I WAS THE PATIENT getting a fluoro procedure, watching myself on the screen, and laying on the hard cold table.  I was a little of a bossy patient, trying to direct it all from my supine position as kindly as I could.  I wanted to make sure the radiologist checked everything correctly.  RESULT was that my port only worked in supine (laying down flat) position and would need to be replaced.  SO, back to Morsani surgical center on Wednesday for Dr. Cox to adjust or replace it.  Then I should be back on track for chemo the next day.

YESTERDAY, my sweet and beautiful niece, Brittni, surprised me with a t-shirt reading "I Fight Like A Girl" with pink boxing gloves.  She bought herself one too in support of her Aunt Dina.  With the love of my family and so many praying for me, I keep on fighting hard like a girl...even if I sometimes have to take a moment and cry like a girl too.

Monday, January 9, 2012

BARBIE DOLL ARMS

HELLO BLOG READERS, FRIENDS, AND FAMILY...I'm back out of hiding!  Not really...just felt a little unmotivated and uninspired to blog in last few weeks, partly I'm sure with holidays being a little busier even though we kept things pretty simple and enjoyed time with family, including a one-night camping getaway at Silver River State Park about an hour from our home.  We've also found a new family fun night which we call "campfire movie" (don't laugh), where we sit on our small deck out back around a nice fire in our firebowl we love, bring the flat screen tv and dvd player outside and watch a movie favorite under the stars.  So far we've watched The Help, our old favorite The Edge with Anthony Hopkins, and Cowboys and Aliens (mom's least favorite, sorry guys!)  We find the best ones are the outdoor setting movies.  Its fun.    

NY 2011, Our 25th Anniversary
SOOOO, as an update, here's what's been going on in the Burns household.  Tyler, our oldest son is continuing his ministerial licensing classes called DSOM which he loves and he continues to lead the youth worship and manicure his little bonsai trees, a new hobby.  Cayler, started his culinary program today and spent a lot of time over the holidays enjoying mountain biking with Sami and Tyler on the Santos trails near Ocala.  Kenny's keeping up with work, playing a little tennis, as well as transporting me around to appts. and being my constant rock.

AS FAR AS MY HEALTH, unfortunately, Lymphedema is the issue of the day lately.  Despite all the surgeons efforts to avoid it and despite the 75% of women who never get it...I am dealing with some swelling in both upper arms that's not going away easily this time.  We all have a lymphatic system with small lymph nodes and vessels running throughout our bodies alongside our blood circulatory system.  It carries lymphatic fluid throughout which is what aids in repairing damages to our body like when you get a cut or burn, and fighting sickness in general.  It's also the transportation system that carries and spreads cancer cells from one part of your body to the next (metastasis).  During a mastectomy, many lymph nodes in the breasts and arms are removed leaving an interruption in the proper flow of your lymphatic system and in some cases lymphedema, or fluid accumulation in the arms.  Up until now, for me its been only a day here or there occasionally and Kenny would help with massaging up my arms and it would go away and feel better the next day.  THIS week, its hanging around for going on about 5 days now. Nothing real painful, just slightly uncomfortable in respect to what I've learned as my new "normal", but I'm just concerned about it getting worse or becoming MORE of a chronic problem if I don't handle it correctly.  SO...I'm contacting a lymphedema therapist today about my options.


WELL, THE DOORBELL RANG and my new lovely wardrobe addition just arrived...my lymphedema compression sleeves.  HOLY COW!!  I've put these tight banded sleeves on my arms which compress from my wrists to my armpits.  Besides causing me a slight bit of claustrophobia, they are EXTREMELY TIGHT AND UNCOMFORTABLE making my arms and hands ache.  I know I bought the right size and I'm sure they are supposed to be tight to work that fluid up the arms, but let me say again...HOLY COW!!  I didn't envision them being this tight.  No wonder they say so many women end up throwing them in a drawer and only wear them when they fly.  GEESH!  We were laughing the other day when Kenny said my bald head and make-up'd face looked like a barbie doll head where the kid has pulled all the hair out.  NOW, I HAVE BARBIE DOLL ARMS TOO WITH THESE FLESH COLORED SLEEVES MAKING MY ARMS LOOK PLASTIC AND HARD.  Another chapter in the saga, I guess Continuing to pray God will take this lymphedema away all together, but I know His ways are not always our ways.  

Thank you to many of you who have reached out to check on me and my family and for the many, new people each week who tell me they are praying for us, everyday even.  Its quite humbling and I feel undeserving of such commitment, but I know its God's arms extended..."GOD WITH FLESH", our friend use to say.  So I thank you.