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.

 

Lindsay’s Story

This story is about Lindsay Stern.  Her parents have been instrumental in being a voice of RRP, research, support system and lead the RRP Foundation.  Long before Facebook or Twitter or really the internet as we know it today, they were leading the way….fighting not just for their own daughter but for each one of us that fights RRP daily.  They are truly RRP Heroes.  

Lindsay Stern’s RRP Story

[The following is reprinted from an article that appeared in the Spring 1996 issue of the RRP Newsletter plus updates to the present.]

We adopted Lindsay from Korea when she was 13 months old.  From the first day that she was with us we noticed that she had a low cry and a faint deep voice.  We often mentioned this to our pediatrician, who said that we were “lucky” that we didn’t have a baby with an ear piercing scream.  She seemed generally happy and healthy, except for an occasional cough, croup, and constant ear infections.   Shortly before her second birthday she seemed to be breathing loudly and then began snoring loudly when sleeping.  After more than a month involving many visits to the pediatrician, diagnoses ranging from post-nasal-drip to asthma to croup and 3 weeks of prescribed ventolin and prednisone treatment, we were referred to a local otolaryngologist, Dr. Stephen Farmer, in Princeton.  After looking into Lindsay’s larynx with a scope, he sat us down and told us what he knew about this disease that we (and our pediatrician) had never heard of.  He referred us to Mount Sinai Medical Center for emergency admission that evening, November 14, 1991.  Lindsay was scoped again and the resident otolaryngologist suggested the possibility of a tracheotomy (at this point we barely knew what a trach was, let alone the implications when it is used in conjunction with RRP).  The next day Dr. Peter Catalano performed a laser surgery, thankfully, he was able to avoid a tracheotomy, despite the fact that she was nearly 99% obstructed ( We remembered the embattled and exhausted look on the face of the anesthesiologist after coming out of surgery.  Lindsay was the most severely obstructed two year old they had ever seen!) She spent 9 days at Mount Sinai with a second laser surgery 6 days after the first.

We had many questions and only received a few answers.  No one seemed to know much about RRP, only that it is rare.  Were we all alone with this disease?  What type of life did our little girl face and how many more surgeries will she have to endure?  Will she live to go to college, get married and raise a family?  Is there anyone doing any research to try to find a cure?  No one knew of any support group.  We scoured the Mount Sinai medical library for information.  The little bit of literature about RRP that we found, told us that it was virtually certain to reoccur for some time.  We very much needed to reach out and talk with others in similar situations.  It was this deep need for emotional support that motivated us to seek others and develop a support network of RRP families.

We began the process of reaching out to others by contacting the otolaryngology departments of  major medical centers in the Northeast U.S.  In our search we found out that Children’s Hospital of Philadelphia (CHOP) had a significant RRP patient population and the otolaryngology department clinical nurse, Linda Miller, provided a wealth of information (and if it wasn’t for Linda’s support and guidance, we might not be coping today).  Over the next 6 months Lindsay had 7 more surgeries, all at CHOP.

During this brief but aggressive period we felt our emotions wax and wane as this disease went through its unexplained ups and downs.  For example, Lindsay’s 5th surgery since diagnosis occurred on February 13, 1992, it was her best to date.  Her surgeon, Dr. William Potsic, told us that he found only a small amount of papilloma on the false and true cords (using the Kashima scoring system, my estimate was a score of 2, where 0 is none and 27 is total coverage and obstruction).  He lifted our spirits by predicting that we should be able to extend the surgical interval to at least 5 weeks.  Well, this fickle, uncaring disease gave us a significant emotional blow, when less than 3 weeks later Lindsay began snoring loudly and her nightime breathing had become distressed (i.e., early stage stridor).  Unfortunately, this was a Friday night, which meant an emergency room admission.  In anticipation of some difficulties, we video-taped Lindsay’s breathing while she slept that night.  On Saturday morning we went to the CHOP emergency room and, as we feared, were presented with difficulties.  The emergency room doctors didn’t really have a clue regarding RRP,  saying that she might have a touch of bronchitis and were going to send us home with ventolin.  We insisted on having the otolaryngology resident on call examine her.  He also was about to release her, not finding any significant respiratory problem in his exam.  But she was awake now, and as parents of an RRP patient we knew that respiratory problems from papilloma (in young children) always appear more noticeably at night while asleep.  We insisted that he look at this video of her sleeping the night before.  Reluctantly, he agreed, and 20 minutes later he came back saying that she was obstructed and would be admitted.  Our difficulties in this situation did have some positive impact on emergency admission policy for RRP patients at CHOP.  Based on our experience, Dr. Potsic, who very much believes, that parents are the best judge of when their kids with RRP are ready for surgery, instituted a policy that a child with RRP will be admitted and surgery performed on their parent’s say so.

Lindsay continued in an aggressive mode, requiring surgeries 7 and 8 over the next 5 weeks – we were starting to consider adjunct treatments, such as acyclovir or interferon.  About a week after her eigth surgery, we received a call from Linda Miller.  She had just spoken to some one from Long Island Jewish Medical Center (LIJ) and during the conversation a study involving indole-3-carbinol (I3C) and RRP was mentioned in passing.  We quickly pursued this by contacting the LIJ department of Otolaryngology and were put in touch with the researcher, Dr. Karen Auborn.  Dr. Auborn told us of encouraging results with a mouse study and suggested cruciferous vegetables as a source of I3C.  She estimated that about 8 ounces of cabbage (or about 4 ounces of cabbage juice) might provide a sufficient amount of I3C to induce a shift in estrogen metabolism so as to suppress papilloma growth (see the RRP Newsletters Fall 93 through Fall 94, http://www.rrpf.org/newsletter, as well as Newfield et al., 1993, Anticanc Res 13:337-342).  Lindsay’s 9th surgery occurred several weeks after initiation of a daily regimen of between 4 and 6 ounces of cabbage juice (The juice was made palatable by mixing approximately 2 oz. of cabbage juice with 5 oz. of apple juice.)  In contrast to the 8th surgery, which (like most of the prior operations) involved laser excision of a large amount of papillomas from multiple sites, the ninth surgery revealed a very small amount of papilloma which could easily be removed with a microlaryngeal forceps.

Lindsay continued the cabbage juice regimen and had two more visual examinations of her respiratory tract under general anesthesia at which no papilloma were found.  The first was at the end of June 1992, 6 weeks after her ninth surgery and then again at the end of September 1992, shortly before her third birthday.  At the beginning of 1994, when it was learned that we could obtain I3C in powdered form we gradually modified her sources of I3C to include approximately 190 mg of powdered I3C daily and reduced her cabbage juice intake to about 2 ounces per day.  As of the Spring of 1996, when Lindsay was 6 1/2 years of age, she continued with this therapy and remained free of symptoms since her last RRP surgery in September 1993.

We are most thankful for Lindsay’s apparent remission and wish the same for all RRP patients.  It is our firm belief that I3C played a key role and this appears to born out by the accounts of some others in the support group as well as the clinical work of Dr. Clark Rosen and Dr. Karen Auborn.

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A few years later a better form of I3C became available, so we switched Lindsay’s adjunctive therapy to BioResponse DIM (http://bioresponse.com/Home.asp). Now in the fall of 2014, about 18 ½ years since our original Newsletter article about Lindsay, we are happy to report that she remains in symptomatic remission.  We are extremely fortunate that Lindsay has been able to lead a very normal and active life.  She was a competitive swimmer into college.  These years have not been without episodes of hoarseness causing us concern that active RRP might be returning.  However, scopings have not revealed any recurrence of papillomas.  Lindsay does seem more sensitive to voice abuse and did have a number of tonsillar infections including one incidence of a tonsillar  abscess that led to a tonsillectomy at the age of 19.

We know that I3C / DIM does not work for everybody, but during the more than two decades that we have been involved with RRP we have seen significant progress in other treatment approaches.  In our opinion a remaining major challenge is to produce an effective treatment for pulmonary RRP, which affects a small percentage of RRP patients, but transforms an annoying disease into a life threatening one. One of the RRP Foundation’s main initiatives is to motivate the RRP research community to develop new approaches to produce effective treatments for aggressive, deeper, generally inoperative RRP.  Data suggests that lung involvement impacts about 5% – 7% of RRP patients, but it does represent at least 95% of the mortality associated with this disease. In addition, treatments that prove to be effective in these aggressive RRP cases should also be effective at other sites in the respiratory tract.

This article would not be complete without noting that without the inspiration of a number of RRP practitioners and researchers, i.e., Tom Broker, PhD, Bettie Steinberg, PhD and Haskins Kashima, MD, we would not have been motivated to actively seek information, network and organize.  In particular, we are indebted to an article in the New York Times early in 1992 which put us in contact with Dr. Tom Broker .  Tom literally spent hours on the phone with us.  His enthusiastic support for developing a close working relationship between RRP researchers and patients was critical in directing our efforts and creating the RRP Foundation (www.rrpf.org).