Avelumab, Cycle 1, Week 2

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”
― Nelson Mandela

I’d like to change the word “man” to “woman.”  Done.

Fear….anxiety…..two words that have followed me into the OR for most of my life.  It was never about a lack of faith, and I honestly find it incredibly cruel when people say to others, “If you had more faith, you would have less fear/anxiety.”  Can we agree to toss that line into the compost pile?  Back to fear/anxiety….I suppose as I grew older and learned more about what can happen in the OR, I developed a fear of the process.  Each needle would create a tension that worked against my body relaxing to lessen the pain.  Then the major medical mistake that nearly cost me my life….and an irrational fear took over any resemblance of rational thought when it came to any type of medical procedure….my first thought when coming out of anesthesia had become, “I am alive.”  Mix all of this into a life where over 250 surgical procedures have taken place….and it’s not too far fetched to say there could be some PTSD in all of this….a reluctance to do what is needed in order to live life more fully…because of the fear and anxiety of past issues and knowledge of what can and does happen under general.  None of which is in existence because of a lack of faith…if there was a lack of faith issue, I think long ago I would have grown so angry at God that I just walked away entirely.  So, I start with this on this blog entry just to gain a little insight into why what seems so mundane…is truly a celebration for me.  My entering this trial, was a giant leap of faith….a giant test of what my courage level is…and even greater test of what I was willing to work through when the fear knocked so loudly.

Cycle One, Week Two

Monday:  I arrived into DCA after an uneventful flight.  If you read about the prior flight, you know this was a very welcome change.  It’s still unnerving to enter approach at DCA and see water in front, behind and on the side of the runway.  Much like that runway at Boston.  The wheels touched down and you are thrust forward as the brakes are applied to prevent water issues.  I’m always silently relieved when the person next to me isn’t a chatter.  I am simply on the plane to get to point B from point A…..I’m not that passenger who even tries to utter more than that polite nod and smile as the person sits down in their seat.  I follow that rule of, “if earplugs are in, or a book/iPad out…there’s your sign to not speak.”  Soon, I was on my way to the NIH campus to get admitted and being the week.

Monday brought a fun adventure for dinner into Bethesda.  I was able to finally meet a Chicagoland person that I had met via Facebook through an Arkansas friend…crazy that it took being in the DC area to finally meet.  Such a great time of learning about one another…and oh the crab cakes….Alabama sourced blue crab, hardly any filler….oh how I love those crab cakes!  I am beyond grateful for the gift of independence given to me while I was growing up.  It may not have seemed like a gift at the time, but now…I treasure it.  Not being afraid to travel alone, venture into parts unknown…tackle public transit…and walk confidently as I explore…thankful.

 

Tuesday:  This week of the cycle was more downtime due to no scans or other testing outside of copious amounts of blood drawn each AM…at 5:30 AM.  Seriously..I’m calling it. Vampires…the nicest vampire in the world…but still….work done before the sun rises…and it’s blood…there’s a possible link.  (This is alternative facts.)  So, once AM labs were done, it as time to get ready for clinic that afternoon.  Back to the fear/anxiety paragraph…over the years, I have developed a true fear of being scoped in the clinic.  There have been times I literally had tears running down my cheek, simply from being so fearful of this procedure.  I know God knows that fear…and He also knew that I needed to do this trial.  The first scope by Dr. Allen in December, I used music to try to distract my brain from the process.  It was the least uncomfortable scope I have ever had.  And then we are at this past week….and I used no music…nothing…I’ve jokingly referred to him as the “scope whisperer” and I am amazed at how the fear is just gone.  Once my video was complete, I was done for the day, so I put on my “Where’s Waldo” hat and ventured back out.  PS-passes off campus are a glorious thing.  I grabbed a late lunch/early dinner at an authentic Spanish eatery.  There were  menu items I would not touch in a million years, but was thankful for a great waiter who guided me towards safe choices….I’m a fan of those safe Spanish choices.  Tapa style eating is awesome!  Then I grabbed the Metro back to campus and caught “This Is Us” on TV, and called it a day.

 

Wednesday:  Due to my pitiful, small veins, I was not cleared for Aphresis…so once my AM labs were drawn and I had seen everyone on the teams dealing in my care…and the visit from the social worker….I had a free day.  There was talk of running fluids to prop up my BP, but that would be done that night if we did it at all…..so with confidence..down to the Metro I went…I was headed into DC to the Newseum.  (If you know me, you know I am a total news nerd…so when I heard there was an entire museum dedicated to the First Amendment and historical pieces from all mediums in journalism…well…my Disney World.)  Then….I was stumped.  The side of the Metro that would take me where I needed to go, was down….and the marquee with how to use the one track going both directions was down…I was a lost goose.  I had no idea what to do….so…..because I’m such a go with the flow person (you can laugh now), I came back up from the depths of the Metro and decided I would just walk into Bethesda Row area.  Being able to walk 1.4 miles in February and not be a popsicle…glorious.  I was able to pass by things on the NIH campus I had missed, always being on a shuttle or down in the Metro…able to see small businesses up close, venture into an incredibly nice Teeter….I know my being able to do such a jaunt (even if it seems small) is a gift….there are times when that would seem an impossible feat, so I am grateful for those days where normal seems almost within reach.  NIH rooms are equipped with the most awkward showers.  I can barely shower safely, so washing my hair is just a big production.  I decided to take in a “blow dry bar.”  This was my second time to use one of these, and I must say…better than a pedicure.  Once my hair was “southern high”, I grabbed a late lunch….and returned back to campus catching an NIH shuttle at one of the local hotels.  NIH makes getting around so easy.

Once back on campus, it was time to do those little rituals that I think help with OR days.  If for no other reason, those rituals give me some sense of control.  Soon, it was Ativan time…if you don’t take advantage of the beauty of Ativan before OR procedures…you should. And in the blink of an eye….the two hard days were here.

 

Thursday:  I have noticed, that OR days bring a different pace to the nurses caring for you.  I’m one of those that had rather wait to closer to time to change into that lovely gown, but it creates stress for those charged with getting me ready.  Patch-on.  Second Ativan-check.  Time to roll to pre-op.  OR days are just odd to me now.  When I was younger, the bounce back from all of it was so quick.  Now, it’s simply not the case.  I remember the IV being started….and that’s about it.  My next memory would come about 8 hours later…when I was awake long enough to eat some of a baked potato and drink some fluids…then back to my own “La La Land.”  My OR IV failed during the OR, so I woke up with one hand swollen and throbbing and an IV in the hand that had no IV just a few hours earlier.  One cannot express the confusion this created in a very drugged mind.  I would write more about Thursday…but I honestly don’t remember anything else.  Only because it’s written down, I can say there were no new growths…and maybe some change…too soon to really know if it’s change we are seeing.

The big news of the OR and the week comes at the end of the blog…

 

Friday:  My second OR IV was failing, so it was a relief to get that removed before it caused more issues.  Before I could even brush my teeth,  it was time to head to the procedure wing to have my infusion IV started.  It’s so important that the infusion IV be in a strong, healthy vein, they use ultrasound guided methods to start that IV.  I’m an IV baby.  I want the injection of local….that wasn’t written into the trial protocols, so I have to settle for the cream.  It was placed to low on both arms….so, in what can only be described as a huge moment of either delusion or bravery, I let her do the IV with full sensation….granted it was only a 22 and it was in my forearm…but I did it.  I don’t want to do that all the time, but it’s huge for me to be able to say I did it.  I stepped over another fear mountain.  Back to my room, to pull myself together for the day, eat some breakfast and prepare to get pre-infusion drugs.  (PS…I cannot speak highly enough of the care at the NIH on the oncology floor…the nurses are incredible…and they truly love what they are doing.)

My infusion head nurse was probably my age, maybe a little bit older.  The time had arrived for the Tylenol and massive dose of Benadryl….I seriously have found the Benadryl to be the worst part of infusion day.  It just makes you feel horrible and I am one of those that it doesn’t make sleepy…it makes me tense.  Not a fan, but it’s necessary to help prevent infusion site issues.  11AM.  Infusion started.  This cycle, I didn’t even glance over to the to the bag.  Not one time.  It’s infusion rate was increased twice per protocol, and soon it was over and the line was cleared…and it was done.  I ordered a small lunch and then spent the better part of the day trying to recoup from Thursday OR day.  Anesthesia just isn’t a friend to folks my age, and two visits to the OR in three weeks..well…not a fan.  The teams came by to follow up on Friday and then my Princess came on shift.  Princess….I still just can’t begin to express the joy she oozes. She stands at the computer in my room and she is singing while she charts and scans.  Seriously….how can that not make you smile?  Princess walks in, and her first words to me this visit, “Ms. Kim, you look tired.  Let’s take your night meds early.”  “Umm….can we try to wait to normal time?” “Now, Ms. Kim, I’ve been doing oncology floor for 12 years…you need to trust me on this.”  I did…and she was right.  Sometimes, there is no shame and no defeat found in fighting what your body wants to do. She helped me to see that asking for Zofran wasn’t failure…it was me realizing that what I am doing is not easy, it has consequences.  Princess is so funny….she let’s me sleep once she gets that 10PM vital…sorta.  She cracks the door occasionally throughout the night…just barely peaking in….I will miss her…and honestly the entire NIH staff when this trial is over or I am removed.

Saturday came.

 

Saturday:  Even though you know it’s “go home” day…until you know that the final check  has been marked on the discharge orders and final IV removed..nothing is certain.  With my bag packed, some resemblance to looking human having taken place by simply putting on regular clothes and shoes..it was time to head back to DCA for a flight to Chicago.  In this visit, I had been cared for by women from such diverse backgrounds.  The unit already knows me….and I was able to meet some of the other patients in the unit on other trials.  People, where this is their “Hail Mary.”  That’s strength…at least it is to me.  To see people walk the hallways that I am sure had rather be in bed…but they put one foot in front of the other and they walk.  I learned I seriously want a purple, satin robe…what strength that robe spoke as that patient walked by.  Nausea is real this time.  I don’t know why I expected to escape side effects….but I did.  Today is better…and I am hopeful that trend continues.  I know the fatigue is coming….should be here Thursday….and it’s manageable and I am prepared this time…I won’t be caught so off guard.  As Princess told me, my immune system is at war right now.  Sweets sound and taste horrible now.  Things that aren’t sweet, taste sweet.  I never thought a day would come where I would walk past cake or a dessert menu without even a glance.  That day is here.  If this works….flip-flopped taste buds…a small price to pay.

 

Closing:  I head back for an infusion/clinic only visit in nine days.  No OR this next trip.  My body is so thankful for this break from the OR.  I’ll go back to the OR on the visit after next, but I plan to enjoy anesthesia free existence for a few days.

Now back to fear and anxiety.  A few people knew what I was doing on this visit….I did this entire week solo.  On my own.  Just me…and me.  I had such a confidence in my care, and I honestly don’t want Lee using all of his vacation time sitting in a clinic or hospital….I went rogue…solo.  I cleared it with the team before I made the final decision.  Today, knowing that I can do the OR, clinic, infusions…all of it…with confidence…solo…..I can’t begin to express the wave of relief over my entire mind.  I needed to know that I could handle my health solo.  I do so in clinic settings already, but this visit..I conquered that last frontier…could I do it if there was an OR visit…could I do it on infusion day…could I make it to my gate at the airport….and I did.  There were incredible friends who prayed and checked on me all week…Lee who has learned through the years when to be there and when to just sit.  Now, Lee is coming on March 6th week.  That’s a big week in the trial and one that we both need to be part of.  Today, this past week has me thinking of my Mom and my Dad….and my Granny Louise…and my Granny Page-the people that gave me this incredible gift of independence.  I wish I had known it was a gift at the time it was happening….it’s only as a much older adult that I can look back and see how certain events and lives modeled…influenced me.  There’s a power in knowing you can do your life solo….and a joy in knowing that for whatever the reason, God has said, I know you can…but you don’t have to. A spouse that understands that unique wiring I possess and allows me that freedom to soar independently when I feel I need to-I get to make that choice as different things come and go in life.

The countdown is back on….to Week Three, Cycle One.

Oh….in other news..while in Bethesda…my son was notified he was awarded a Fellowship for the summer at AMF and my daughter turned 30 and headed out for a Waco adventure.  Thankful for kiddos that know how to soar..who take leaps of faith much more often that I could have ever dreamed for them.  They teach me….and that’s just cool.

I didn’t load any pictures into this blog post.  I am guessing a picture of my very bruised left hand isn’t necessary…I loaded some of them on FB and that’s enough.

PS, I did find that going downstairs to get “real coffee” in a robe and pajamas is totally ok….now if I could just get the same acceptance of that at the grocery store.

 

Am I like Truman, on TV and unaware?

I’m seriously beginning to wonder if a portion of my life isn’t a version of The Truman Show.  I keep looking around for cameras or repeating background scenes.  If it appears my life/blog has become one endless conversation on health, testing, etc…well…it’s because it seemingly  has.  You would think if I was some reality based television show that I would at least see an increase in the checking account….right?  I mean…if I am going to be the newest red pin cushion for the world to watch….show me the money!

It seems with all the attention that my lungs have been receiving lately, that “my girls” have become jealous and have decided that they want countless pictures made of them as well.  Attention “girls”, this chick is annoyed.  Sure, some of their activity is out of their control…dense girls…no, not that type of dense!  (Although, I am beginning to think it might fit.)  A little known factoid regarding a high breast density-Women with dense breasts have been shown to have a four- to six-fold increased risk of developing breast cancer; only age and BRCA1 and BRCA2 mutations increase risk more. (Yes, you read that correctly…a higher risk factor than a first degree relative!)  I’m dense.  Again, not that type of dense.  My son may well disagree with that statement, but I’m clinging to my “not that type of dense” statement!

So, back to the girls.  I was very fortunate to be part of a breast clinic in Northwest Arkansas that took breast density seriously and made sure those “dense girls” were treated accordingly.  I had regular mammograms, a yearly Automated All Breast Ultrasound (ABUS)-they used Sono-Cine, and I kept those follow-up appointments without fail.  For a couple of years, the girls were active.  It was as if they wanted to see just how many “what’s that” they could toss out in screenings.  Four biopsies over the course of six years..fun times.  They settled down, grew stable and I was a mere three months from graduating from my “see you in six months” routine when we moved to Chicagoland!  Maybe it was the bitter cold that made them angry…maybe it was all the attention the lungs beside them were getting….maybe it was just their narcissistic personality of wanting attention…whatever their excuse, the girls are awake and having a party.

July I had my 3D mammogram in Chicagoland.  3D mammogram?  Are you asking what in the world?  Breast tomosynthesis is the fancy word for it.  A little factoid regarding 3D mammograms-Researchers found that 3D mammography, used along with standard digital mammograms, bumped up breast cancer detection rates by more than 40 percent. (From WebMD) Given my girls and their “dense” nature, this is my preferred mammogram method.  Still not perfect for their high maintenance attitude, but it’s a start.  Normally, I would have that and then the yearly schedule of my all-breast….but until this week, I had struggled to find a local provider.  Back to the girls and their drama.

Increased calcifications.  Yep.  The girls were awake.  No mention of anything else on the report.  BIRAD 4.  Well, isn’t that nice.  If you know anything about breast and biopsies, you know calcification biopsy is the least enjoyable of them all.  Not that any of them are enjoyable, but just put this in your head….biopsy gun for core samples while your girls are being smashed like a hot potato!  (I am looking around for the camera right now.)  True story-I laughed when Dr. Radiology came in to “break the news.”  I  mean, at some point, doesn’t all of the testing and such just become a comedy?  I think I replied something along the lines of, “Of course you saw something.”  Biopsy day came, a little Ativan to settle the nerves, smash/smoosh/squish…..passed out Kimmie coming to as the doctor and nurses are hovering over her with comments such as, “her pulse is stronger.”  Yep..stereo ain’t for the weak.  50/50 odds…give us two-three business days.  Thankful for a B9 report with some things to watch….but I can do that…it’s B9.  Take that girls!  See the machines in six months…..now, if you know me, you know that nothing is every that simple with me….I should have just brought snacks and a cot…..

Ok…so we remember…that’s ALL the fancy 3D mammogram showed…right?  Fast forward to that visit to Mayo.  Well, wouldn’t ya know it….the left girl got jealous of the right girl and decided to get all sparkly during the contrast phase.  Seriously????  You played hide and seek three weeks prior during the mammo and you decide to show up to the party a tad late and excite all the medical folks?  Drama queen!  So, back to the girl clinic this week…..ultrasound…oh yep…there it is….oh wait…what’s this?  (Insert my rolling of eyes…) Tech puts that obligatory hand on my shoulder as she tells me she will be back with the Doctor.  In walks the Doc and a solemn faced tech.  (Ok..I get it…women freak out about these things…but have you seen my file? I’m five biopsies in….you would have to come in with tears and the chaplain to really create a response here.)  So….blah blah…biopsy..blah blah…schedule..blah blah….ok.  Soon thereafter, the call from the Breast Surgeon office comes and I’m being passed off….the girls have made everyone nervous and it’s time for the big-guns to handle it from this point.  Next day?  Five PM?  Drama.  The girls have me so annoyed at this point.  Don’t get me wrong, I’m grateful and thankful we have medical care now that saves lives…and I’m thankful for the proactive approach…but I can be annoyed.

Dense breasts……I’ve been told they will calm down as I enter the 50’s…but they don’t know these girls.  They have a serious Napoleon complex (yes, they are size challenged). Like a star pupil, the girls and me (or is it “I” or “myself”??? PS-don’t answer.), well, we kept that next doctor appointment and we are still scheduled for what should be a very fun morning next week…..see…everyone is so excited now, that well, it’s two spots (one of which has been there, but “since we are in the area, let’s go ahead and take some of it too) plus two cysts aspirations.  Is this where I need to start searching for a negative cup size sling for the girls?

So, back to the whole Truman show idea….is this where I look into the sky and talk to the people in the control room?  Somewhere far away, are two ladies with one-hundred cats sitting and telling all their friends over bridge about this gal in Chicagoland that is becoming one of the better claimants for BCBS?  Wait…I think I would be a bad claimant if I am actually filing claims..right?  Anyways….to my girls…party is over….after next week, y’all are in time-out until, well, the end of time.

Now for a bit of seriousness….ladies….next time  you have that mammo-ask for your density.  I suppose I first need to say-get those mammograms!  If you do have dense breasts, request a yearly ultrasound screening or MRI.  It could save your life!  Our girls tend to be drama queens…and like that friend who kept your drama queen friend in check in junior high..it’s our job to keep them in line…well…at least try.  Not one time have any of my solid issues been visible on mammogram.  Only calcifications…and even then, it’s like finding a needle in a haystack.  Know thy density!

Now off to dream for biopsy #6 and #7…fun times….smile for the camera! Or wand…whichever it is this time!