Really Big Needles

I am not a fan of needles.  I mean, really, who is?  If you are, I’m sorry, we just can’t be friends.

Most of you guys have been following the saga of my lungs and such for almost two years now…crazy…almost two years.  One would think that I would be further along in this little journey, but slow and steady is my mantra…plus, I’m a classic over-thinker, and I have way too much access to google-ya know, Dr. Google.  Anyways….I did it.  I pulled that trigger this week and admitted that two spots were likely better off identified than left hanging out to their own little march.  I had a lung biopsy.

Both lungs have several areas, but on the left are two decent size nodules that I think show out to put the right side to shame….should I tell them that I like the right side more because it’s not a show off?  Nah….they would probably act out like a two year old by going all ninja on me….we will just let them keep thinking they are the belle of the ball.  So, the left side was the focus this week.  Decision was made to go after the one that was easiest to reach.

I have to say that once the team and I made the decision, outside of panic moments that occurred when I went to Dr. Google….I was fairly calm about the whole process.  Thankfully, I have some folks who have walked this road already and they were so awesome to answer questions and give me “real world” experiences.  Whether the biopsy came back papilloma (Squamous Cell) or cancer (Squamous Cell Carcinoma), I pretty much already had my plan in place and knew what to expect either way.

So, off to Mayo I went.  As with any other trip to Mayo, it began the night before with dinner at Chester’s.  Seriously, it’s good eats.  Now….imagine my heartache when I realized my favorite menu item was no longer on the menu!  I may or may not have whined to the waitress more than once.  She encouraged me to order the Lobster Mac-N-Cheese and it did not disappoint.  Now..was it as wonderful as my Thanksgiving Dinner on a Plate I had come to love…why of course not.  You guys know I love Christmas…. Thanksgiving is close to Christmas; therefore, I love Thanksgiving food.  Who am I kidding…I love food…and dessert-365 days of the year.

The  morning came and off I went to check in for labs and such before I headed up to the procedure floor.  Blood draws…such a mundane task, but so thankful for such an easy way for information to be gathered.  (Hint…always ask for a butterfly…trust me…ask!!!) Then it was time to go up a few floors and check in for procedure.  I kept asking folks to volunteer as tribute…no one did.  Note to those reading…DO NOT check in early for procedures….you will be called early…just saying…..so called back.

First was the lovely ten million questions that I have come to assume is an attempt to catch you in a huge lie about your weight or height or drinking or smoking habits…then came my conversation about my veins and what typically can go wrong…what always goes wrong and before you could blink, the nurses went and grabbed an anesthesiologist.  (Smart girls!!)  During his search and destroy mission, we chatted and his brother did his undergrad and grad at my son’s grad school for Cello performance..small world.  I didn’t get a sense of great pride from this brother about his brother…but I suppose if you can’t knock out excerpts from classical pieces from the 1800’s..well…jealously.  I mean..doctor..sure..that’s awesome and all…but classical musician…that is so much better!

A little IV help for those who are a hard stick:

  1.  Have them wrap arm in a warm blanket.
  2. Ask for anesthesiologist or oncology nurse to start your IV
  3. Know where IV’s are the easiest to thread and ask them to use that area
  4. Do arm weights to build up muscle mass in your arms.  I was told all the medical reasons as to why this works, but again…drugs.  
  5. Drink plenty of water the day before/day of an IV stick
  6. Ask them to not dig for a thread
  7. Get the local.  If they won’t give you a local, see number 2.  Those two can.  

With the IV in, I was sent back out to wait my turn to change clothes and go to holding.  Can I just say that was a really short wait….it really wasn’t, but when you are still wondering just what can you do to make it where you can leave and go have dessert..it seems like a short wait!

Holding time came and before I knew it I was being rolled off to the procedure room.  I wasn’t fearful, mostly just desiring to be fully aware of each part of the process.  Surprises are not my thing-at all.  I’m an order gal.  I prefer my days to be post-it note organized-or at least appear that way.  I can go with the flow, but that flow has to be about a 1MPH flow….anything more than that and well….you best have some cake to go with that chaos.

Dr. Welch and his team explained in great detail what was going to take place.  As I was positioned for initial scans, I was given the first dose of medication meant to keep me relaxed so that the biopsy would go more smoothly—not sure if that is for the patient or the doctor performing the biopsy.  As they then positioned me and marked the biopsy area, it was clear the meds had done much of nothing.  Another dose…..another dose….fourth dose..bingo, we have a winner!  I would be a very expensive addict given my tolerance to such medications.  Initial bee stings as site was being numbed.  Another slight pressure of a bee sting as the wall was numbed.  A few pops of the biopsy gun, and it was done.  I’ve had more breast biopsies than I can count and I truly believe this was easier-discomfort wise, risk wise lung beats breast though-lung risks will honestly freak you out a tad if you let them.  I was then wheeled back to observation on my left side…..passed that faithful man of  mine and of course, I hold up the peace sign.  (I am obviously very chilled at this moment….peace sign?  Really Kim?  Invoking your 1960’s birth decade I guess.)

Let’s just say…if you have had a lung biopsy, you are a popular patient for that first two hours-that critical window where most complications will occur.  I did have a slight hematoma come up that required some beautiful marker drawings on my back and some periods of pressure as they worked to relieve it and make sure it wasn’t developing into something more.  I tried to rest. (Insert laughing of everyone who has spent any time in a hospital setting…the word rest….) Soon it was time for the initial X-Ray to check for pneumothorax and any bleeding that might be taking place.  Check..Done…still, so very chilled.  I think you could have told me North Korea had a nuke coming this way and I would have held up the peace sign again. (Suppose I shouldn’t joke about that given the events of yesterday.)  Keep in mind, not only was I floating on the meds given in the procedure room, I was also on a narcotic to control my constant cough for 48 hours…..I was basically…zoned out sitting on Mars. Anyhow….about 45 minutes later, the team walked in and asked if I was ready to be released to the hotel.  Wait?  What?  I can go????  I was told a six hour hold, so to be leaving so early….seriously folks…that’s God.  I had zero evidence of even the tiniest of complications.  Nothing!  (2 1/2 hour hold!)

So, after being educated on some very scary things that can still happen after release, I was on my way.  Given my little drug fest, I had to do that whole wheel chair thing.  Here I am, chilled to the core, and I get chatty Fred as my escort.  If you know me well, you know how annoyed I was the entire ride down.  Things were going well…..we stopped and Lee ran in to a philly steak place to get me a sandwich….I stayed in the car…..Kim, sitting up, full of drugs…let’s just say I was going down fast…sweats, spinning world…all that joy.  Sent Lee a text…bring me an ice rag NOW.  He came out…and because he was much smarter than me…turned on the car blasting the A/C at winter levels.  Whew….can I go to bed now?  Kim was coming off the drugs. (My little episode gives me even more empathy towards those battling addiction…my four minutes compared to what has to be days…I can’t imagine the strength.)

Back at the hotel, I resume my left side resting and nibble on my sandwich that honestly was nibbled on only to prevent another full blown world spinning episode.  Finally, rest.

The next day, still on narcotic for cough. I felt drugged…still…not at the same level as the day before, but I wasn’t firing on all cylinders for sure.  We ran back to Chester’s for lunch and then it was time for the clinic appointment for results and being released to go home.

Prelim results: as we all hoped and expected, squamous cell papilloma.  No signs on conversion in the samples taken.  Due to having so many nodules, we are going on the assumption the same will apply to those nodules as well.  It could not be true, but that’s the assumption we are on right now.  So, where does this leave me in this little saga?  On the left, I have the one that was sampled and another one sitting on the pleural wall.  (There are some tiny ones in the left as well, but they seem stable.  The right has some nodules, but they are still too small to sample (7mm and less).) The area against the pleural wall has changed…a good bit.  It has a good bit of cavitation and that can be problematic.  Where we are today is deciding if I want to have the lung resection and remove the two on the left leaving me with only nodules 7mm and under and then go to trial….or skip resection and go straight to trial.  Either way…I’m going to trial-NIH/NIC Baltimore.

I go back to Mayo first week of October to visit with the thoracic surgeon that is focused on VATS procedures.  My goal, if I proceed, is to avoid a full open procedure.  To do the resections via robotic surgery.  I’ve had an open procedure before.  I know what that involves and I am going to have to work super hard over the coming days to put that experience on a shelf so that I can make the best decision on how to proceed.  Leave the two large ones on the left and hope that the one on the pleural wall calms down…and that the one we biopsied stays benign and enter trial….or, resection and then go to trial to work on the smaller ones that would be left after resection.

Pulmonary papilloma just stinks.  When the doctors at Mayo talk about how rare you are…you know you are rare.

So, that’s my medical update.

Have to say this…some folks read their Bible while in the hospital or doctors office for peace…some pray….this chick..well I have found there’s nothing better than an iPod playing Bethel Music, Hillsong, Nockels, Jobe  to put this mind and heart at ease.  Find your place and what takes you there….doctors, nurses all want you to be at ease.  It makes their job easier, procedures easier and most of all….puts a smile on your face!

Please, do not think I am strong or anything close to that.  I’m pitiful.  I whine on a lot of days about this path…I really had rather not be on it…but I am. I don’t understand why, and I very likely won’t in my time here on Earth. All I can do is focus on one step at a time…one pebble at a time…and try not to view the mountain.

Peace out folks….time for more coffee.   (Enjoy this coffee wisdom.)napkin-mayo

 

 

Surgery Ain’t for Sissies and Christmas Miracles

The title says it all. “Surgery ain’t for sissies.”  Whether going in for a small procedure or a mid-level procedure or one that requires an extended stay in the hospital, surgery knocks the wind out of the sails.  Period.

I have waited to post this update, mostly due to feeling as if someone had taken a four-wheel mud ride inside my throat and airway and wondering if typing any words at all while on Oxycodone was a wise decision.  (Surely, it might have been funny to see what I would have written.)  Tack on a little respiratory infection coming for a visit, and today, well, today is the first day I think I should type any words to be saved for prosperity.  .

Mayo had  me come in a day early for some pre-op testing and consultations.  One of those consultations was with the anesthesia team.  Normally, anesthesia is that person you see the morning of your procedure and briefly as they tell you “night-night” while injecting the “good drugs” into the IV line.  For this anxious girl, this meeting was the one that I was able to ask questions and they were able to make the notes necessary to make everything the day of surgery proceed seemlessly.  To know they were just as concerned about my anesthesia side-effects as I was….well, that’s huge.  Permission to drink clear liquids up to two hours before the procedure, even better.  It’s the little things that make the biggest difference for any patient.  They were very attentive to those details and it has been my experience at Mayo for the most part.  The patient comes first. A script for Ativan to take the night before to calm any nerves and it was time to have that “last meal” and prepare mentally for the next morning.  (Chester’s is still my favorite place to eat in Rochester…yummy!)

5:30 AM check-in.  The process is seamless at Mayo and it was literally minutes until I was back into the room that I would be taken back to after surgery.  Various things going on around me to prepare the nurses, the room and myself for the day.  Getting shorts to wear to surgery-awesomesauce.  Being told that I could go back to the OR with my glasses on and with my earbuds/iPhone for music-can we get an Amen!  Then when it was time to go back to the surgery department-being able to walk like a normal, healthy person.  I can do this!  Pre-op was even more efficient.  I was sitting up in the holding bed-another little touch that can make a huge difference, while nurses went over the various questions and anesthesia started the IV.  During IV prep, another nurse was making impressions of my teeth for a custom guard-yep, I needed that about thirty years ago-teeth and a lifetime of surgery do not go together.  Then the Head/Neck doctor made a stop by and I was quickly taken to the OR suite.  Less than ten minutes later, my awareness of anything going on was gone.  I awoke in recovery and was quickly released back to the floor where I would spend the rest of the day.  Due to how well I had done, I was being released to the hotel the same day!

I do not say this lightly, this was the best surgery experience that I can remember.  From Thursday-release, I cannot think of one thing I would want done differently.  The biggest praise for me is that I did not get sick…not one single time.  I can’t even think of a time I felt queasy.  This is not my normal pattern, so I am so grateful to the team for each process they put in place to limit this side-effect.

Friday evening-Sunday evening was tough.  I slept most of the time and dealt with some details from surgery that I will just leave off the blog.  Monday came and it was time for the post-op visit and hopefully that phrase, “You are free to go.”  The pain was still fairly even from the prior two days and eating was still a challenge as well as drinking, but it was getting a little better each day.  The doctor went over everything that took place in the OR, along with awesome pictures.  Biopsy results from the larynx and tracheal area would be ready by Tuesday at the latest.  Having a PET scan with a SUV value of 14 in the trachea, I knew it could go either way.  The doctor knew it could go either way as well.  He noted that he did not get everything in the trachea due to the large volume and would have me return in January to complete that area as well as see what my body was doing with the scar tissue.  The lung biopsy did not take place due to the bronchial scope being unable to reach any of the sites.  That will be a procedure on its own in January as well.  Just like that, we were on our way back to Wheaton.

I guess we were about two hours into our drive back when the doctor called.  With excitement in his voice, I got the all benign, squamous cell papilloma!  It would be several days later, that I could let that soak in and realize I had a positive PET scan, changes in the area and my biopsies came back benign.  God took care of this for me.  I know that He did.  I’m not in the clear 100% yet, but that phone call was a huge step forward.  There are still some questions about possibly missing the carcinoma at the base in the trachea, but we will cross that bridge in January.

Once home, I was given the gift of blessings by women I have met in our short time at WBC and in small group.  These women have shown me such love and compassion.  A little back track here.  The Bible study date before surgery, these women covered me in prayer like I had never experienced before.  I will never forget their hands, their prayers, their tears as we prayed for peace, healing, protection.  I know with every fiber in me that those prayers were answered.  I am here today looking at systemic therapies that are far less toxic than those I would be facing if these samples had come back carcinoma.  More than that, I walked down that surgery hall with confidence and peace.  My family covered me in prayer, friends from East to West, everyone that had any knowledge took the time to call out to God on my behalf.  For that alone, I am the richest person in the world.

Recovery took a solid three weeks.  I am amazed that I actually used to have surgery as a kid and would eat a hamburger that same day and be back at school usually within 36-48 hours.  Surgery ain’t for sissies, and it’s certainly not for us “At Your Age” gals!

And now, for the Christmas Miracle.

Surgery was performed to create access for instruments for biopsies and debulking.  I was never, not even once, given any hope or indication that I would gain anything back more than possibly a stronger whisper for my voice.  The goal was to simply determine if I had converted to cancer and create access for the instruments that would be used for that purpose.  The only hope was that in this, I would possibly gain some relief from oxygen-deprivation headaches.  Now, imagine my surprise when about four days ago, something louder than a whisper started to come out.  It’s not easy to do, as I have truly forgotten how to speak, but when I concentrate, there’s a voice.  Those who have known me for the majority of my life, well, they are saying it’s the voice I had in high school.  I don’t remember.  My son has no memory of me with any type of voice, and my daughter only has a scant memory of one.  I don’t know how long it will last, or if it will even come back after the next procedure…but for now, when I really try, there’s a voice. I have woken up each of the past few mornings and the first thing I do, well, is I try to speak.  This, based upon all that I have been told by more than one Head/Neck doc, really is my Christmas Miracle.  My vocal cords are so damaged, so stenosed, that a voice shouldn’t be possible.  I am trying so hard not to think about what happens when it leaves….because I cannot explain the elation I have felt being able to order my own meal in a restaurant.  Not having to depend on someone else to speak for me in that setting.  Simply being able to talk on the phone for brief periods of time without getting a headache or the person on the other side hoping they heard me correctly.

I can only give the credit to God today for everything. He lead me to Mayo. He carried me into that surgery suite.  He heard the prayers of dozens on my behalf.  So, for my Christmas miracle, I am grateful.  I think if I can have it long enough for the babies to hear their Mimi, for my Josh to be able to remember his Mom with a voice, and for me to remember not to take something so normal for granted…..then I have had the voice long enough.  I am going to work so incredibly hard to not beg God for more days with a voice, but ask Him to keep me focused and while I do have a voice that I use it to honor what He has done….not anything else.

Many of those who know this story have asked to hear my voice.  I still don’t know if I am going to make a public post with it.  The last thing I want to do is draw attention to me, when folks, anything greater than a whisper is God. Period.  It’s that simple.

So, this is my Christmas Miracle.  Recovery still has a couple areas to work on, but I am well on my way.

“He performs wonders that cannot be fathomed, miracles that cannot be counted” (Job 5:9)IMG_1753