“So, let go my soul and trust in him…the waves and wind still know his name…It is well, with my soul.” “Whatever my lot, it has taught me to say, it is well with my soul.”
I’m going to let what’s above hang there for a bit and come back to it towards the end of today’s entry. I finished Cycle One of the Avelumab trial for RRP this past Friday. My third infusion is now in my past. I’ll chronicle this trip and then take this entry much further than the other two…
Wednesday: The third infusion trip is a no OR week. I’ll be honest, my body was so tired from two trips to the OR in three weeks, I don’t know if I could have honestly gotten on the plane back to DC had there been another OR for this week. It would have been a pure “God Thing” if I had…and I suppose that’s exactly how it’s meant to be….when my strength fails…His strength carries me. And while I sit here and type my doubts of being able to do it again, I know without doubt, the strength would have been there at just the right time. I left the chilly air of Chicago to go to the DC area of sunshine and seventy degrees. Coat was left at home…not even a light jacket was packed. Checked in at the NIH, rejoiced over my private room (3 for 3), and reconnected with staff that has quickly become folks I am going to miss greatly when I am done with my season in this trial. Nurses that greet you with a hug….desk staff that knows your name as you walk into the wing from the doors.
Thursday: My incredible phlebotomist (AKA, nicest vampire ever.) arrived at 5:30 AM….bed was laid flat…because my BP is still not behaving and in small attempts to prevent another “incident” like week one, there are now precautions taken to help my BP do its thing a tad better. I’ve stopped looking at the vial count or size….research labs are what they are…no sense looking at growing apprehensive of a repeat of week one. My Vampire and I have had this little unspoken agreement…he comes in, I take out my arm for that day, he does his thing, turns out the light and closes the door. Remember that….because if you know me..you know that I don’t like to speak when first awoken from my slumber….
Clinic came quickly on Thursday, and I was sitting on the familiar chair next to the scope of horrors….ok…maybe that’s a slight exaggeration….but I’m sorry….even with the nostril numb…I really don’t want to be part of the black lighted scope going down my nostril to enter the airway and view my larynx and such….and then quickly placed down my cannula for a quick peak at the lower portion of my trachea and bronchial openings. Your body naturally wants to fight this procedure, but I cannot say this enough…Dr. Allen is indeed the “Scope Whisperer.” He should travel-giving a masterclass in his technique. Now…imagine my joy when I only had to do the trach scope portion….oh lung metastasis, you have given me a reprieve over a scope! My lung lesions are my trial criteria instead of my tracheal or larynx lesions…so no scope on this third visit. Insert very happy dance. I was then on pass for the rest of the afternoon, and after my routine pregnancy test, off I went to enjoy an incredibly beautiful day down in Bethesda.
My doctor highly recommend dinner at a new Greek restaurant. I must say…I’ve had places such as Taziki’s, but never really had what one would call traditional Greek food. I’m a huge fan now…I dislike yogurt…as in I don’t understand the mile long display in the grocery store. The texture and taste just aren’t my thing. Well, scratch that…I’ve learned there is a way that Greek yogurt and I do get along. Crispy Brussels sprouts mixed with pomegranate seeds and mint and tossed in a thick Greek yogurt. So yummy that I’m going to try to replicate it at home this week. I was in the area for lunch and dinner, so toss in a very French style slice of quiche for lunch…and I think it’s clear to all, I enjoy food. (PS…the quiche from the French bakery was unlike any I have ever had. It was tall and light..not dense.) The sun was setting quickly, so back to campus I went to enjoy watching my kiddo play in concert at Eastman and settle in to rest for infusion day.
Friday: My favorite Vampire came in again….at 5:30 AM. And you are not going to believe this…but he wanted to chat….about the negotiation process of buying a new home….umm..we have an unspoken agreement..we don’t talk at 5:30 AM…..I smiled, nodded even….but to say I was relieved when the door shut…well….again…I don’t speak first thing in the morning. Up, showered, back into comfy clothes for the infusion and then downstairs for “real coffee.” Then over to procedure wing for ultrasound on my two forearms to mark for IV placement. (PS-this is a super cool thing!) Back to Oncology wing for EMLA cream on those two areas and wait thirty minutes. Back to procedure wing for insertion of infusion IV. Back to Oncology to wait for Avelumab to come up and pre-infusion meds. A 50mg Benadryl push and I are not on speaking terms. Thankfully, for whatever the reason, I thought to mention my reaction to the drug to the team….and learned that my reaction was not typical and was an opposite reaction. So, this push was diluted and pushed at a slower rate…so much better. I did not tense up as badly, my teeth did not chatter…still didn’t sleep a wink…and did get a decent headache as it wore off later in the day…but so much better than the prior two infusions. An hour after the pre-meds, the bag was attached and the infusion monitor programmed….90 minutes. It’s surreal to me how much easier this infusion was mentally….the nurse and I literally chatted most of the 90 minutes away. We were working on solving all of the worlds problems and talking about being a full-time Mom with an autistic child….and how she could work somewhere much closer to her home, but chooses the commute to the NIH because of the mission…how the playing field is level….on the 3NW floor at the NIH…every patient is an equal…cancer doesn’t care about income, status, any of that…and I think that’s what makes it special…every patient on 3NW is fighting something that doesn’t discriminate….it touches every single facet of this world…from the poorest to the richest…patients like me looking for a new cure…patients like maybe the man across the hall possibly there for a “hail mary.” Every single person there…from staff to patient…part of research..something bigger than themselves.
Two hours post infusion, I was able to go outside and enjoy the incredible weather in the courtyard at my building. The sun, it’s warmth, medicine for this soul. Nausea began to creep in, so I headed back inside…insistent on “pushing through” and not taking medication. My “cure” of flavor blasted Goldfish and a touch of caffeine…seemed to be taking the edge of. I can do this. 6:20 my room phone rings…ok…who is calling me on the room phone? Oh…dining services. “Mrs. McClellan, do you plan to order a meal tonight?” Umm…..well…..I suppose since you stop taking orders at 6:30 PM, I should do that. I ordered my standard chicken, baked potato, salad, and a rice krispy treat. (Do not laugh…that’s one of the few “treats” that still tastes good..and it’s a solid “go to.”) Recall that nausea I was treating with my “cure”…..anyways….one bite of the chicken….and it was back. My cure had failed me…enter Princess.
If you recall, I mentioned Princess in a prior entry. She was, once again, my Friday night nurse. Princess started prodding me to take the Zofran around 7:30 PM….I, being the self-proclaimed nausea superwoman…was oh no…I can push through it…it just a wave. 10PM….I think I’ll take that Zofran after all. Now to backtrack a bit on my evening with Princess.
Princess and I had a good amount of time together Friday evening. The floor was slower due to several Friday discharges, so I found that nurses would linger….and Princess did as well. We talked about so much….Jesus….religion…differences between here and the democracy of her native African country that her family still visits..her mother actually lives there part of the year. (Let’s just say, I would probably have a key to my cell if I lived in her country due to my frequent visits for speaking out against elected officials…) Anyways…then we were talking about my journey the past two years as my faith has been on this winding journey…and we talked about our Muslim friends….and she said something that I will never forget. She came here at fifteen. She’s probably late 30’s now…”I never knew religions hated one another until I came to America. In Africa, Muslims and Christians lived with a respect for one another. They attended our events, we would attend theirs.” That first sentence….it’s been on autoplay in my mind and heart since Friday. And then her telling me she has told her Muslims US friends to consider not wearing their hijab in public…she fears for their safety. My heart just ached. All the while, she is oozing joy….a joy that is infectious….a joy that can only be found when one has something bigger than themselves to look towards. She talked about the way she travels the world with her children…wanting them to see the world in the bigger picture that it is…they live simply and frugally to travel to other cultures. It was one of those conversations you cherish…but man..that first sentence. The night came to a close with my Zofran complete….
Saturday: Discharge day. When your doctor shows up on a Saturday in basketball shorts bearing the gift of a cup of Starbucks…I mean seriously….how can it not be a great day. We chatted about what comes next….about different things taking place in the RRP field of treatment….and then…I asked a question that gave me an answer that, I’ll be honest….I’m struggling with just as much as the possible outcome of my next visit the week of March 6th. This is where I am going to end the day to day chronicle and go a tad off the rails from the prior two posts….
(PS-about half way home, 22K feet in the air, nausea came swiftly and I just prayed that I would make it off the plane in Chicago without being sick. It lasted all day and was the hardest wave I have experienced so far. All I can think, is that I did not have on my “patch” that I wear to the OR and maybe that’s why it was so pronounced. Thankfully, Sunday was not that way and today has been easy as well.)
Off the rails a bit…
I knew, when I chose this trial, the bar was set high. The bar for “success” and the bar for going on to cycle two. Think of the bar as the same bar the Chicago Cubs strived for…and it took years..a bar so high that you wonder if it’s even possible. For the Cubs, they finally met that bar and went over it much higher than any dream could have predicted. That’s the bar set on this trial. I knew my body was such that it’s not thirty…it is the age that it is…and I knew that I had to also keep in mind possible life altering damage to my organs and endocrine system that can occur with the use of this class of drugs, especially in longer cycles, rare, but it does occur. I knew that I wanted my participation in a trial to be about more than just me…I wanted the research related to the trial as well as other trials my blood has been used for to count towards that elusive bar of “cure.” I knew going in, I could possibly be looking at three doses and then excluded….and I was ok with that…or at least I thought I was….
I’m done with my third dose. When I return for my visit March 6th week….it’s my first trial review since inclusion. My first CT since that initial CT weeks ago. A CT that will be read without my trial doctors having access to the scan….they will simply get a report on whether I met the criteria for staying in….or my time has come to an end. My bar…is 30% reduction in size of the largest lesion in my left lung. 30% of 2.4cm. My world record level bar…is set. Just a few mm will decide this outcome….and here I am, staring at this bar…that came so quickly….and my peace and assurance about all of it….suddenly, it doesn’t seem “well.” I know every participant so far has responded….and I also know some have just barely, literally mm, been removed from further treatment. Wednesday, after Tuesday CT, I will walk into clinic not knowing if I’m headed to OR on Thursday for a standard debulking procedure or if I will be enjoying DC on Thursday and having an infusion on Friday. I don’t think they will even have to say the words….the team is so invested in the patients on this trial…it’s so personal to them…I think I will see it on their face. And again…it still doesn’t feel “well.” There’s an unknown to all of this as well….the class of drugs in the cancer field is so young. Literally, so many just barely out of phase III trials….there’s a huge unknown as to the how it works longterm….once treatment ends. My disease is considered “pre-cancerous” for trial purposes…and while the lab says one thing…the reality is once you add in the variables of an individuals immune system, the host environment for the lesions….the lab can only predict so much. So, if I don’t reach that bar….will the drug still keep working to reset how my T-Cells work against my disease? Will even a small response possibly continue on to more of a larger response? It’s an unknown…..immunotherapy drugs for cancer are filling the pipeline of every major pharma that has a division for these classifications of drugs. Jimmy Carter is walking around today with no evidence of disease…from his treatment using Keytruda. The commercials seem like it’s the miracle everyone has been searching for…but reality is…the full response rate is around 30% even for cancer patients….but 30% response if you are stage 3/4 is an enormous success rate….so I take that and I wonder…if that same full response rate applies to my disease…3 in 10. I so long to be one that hits the trial criteria to continue on….and I so want to be ok with hearing I am not continuing on….but truth is..today…I am not “well with my soul.”
Something else took place this trip….and it’s that thing that has broken my heart….a hope that I had clung to for so long…for now…not possible. In my head, this trial would go like this: trial, full course of trial inclusion….no evidence of disease…reconstruction of larynx…de-cannulation of trach. I go back to life pre-trach…one I remember…a life pre-RRP, I have no memory of…so…but right now I have the best voice I have had in probably 20+ years….so now, I do have the memory of a almost real voice. One that happens with little effort from me…one that doesn’t create oxygen deprivation headaches…one that allows me to feel almost normal in conversation even with strangers…one that I have used…a lot…often to just say something to a stranger I never would have said prior to now…a “you are so pretty” or “I love that purse” or even saying something to the child sitting on its mothers lap on the airplane….in some odd way, I feel part of this world again in a way I had forgotten what it felt like. To be able to complete the simple act of using FaceTime and truly being able to hold a conversation with my baby girl, my baby boy, and those precious babies I so adore…..how will I be “well” if/when it goes away? How will I accept hearing I’m likely never going to live life without a trach? That’s the news that broke my heart….even if it works…even if I could reconstruct my larynx….the stenosis is so extensive…my life would likely be almost impossible without a trach. I have clung to that hope for so long…that one day…it would be gone. I just assumed….I never really asked the hard questions…maybe even I knew I didn’t want the answers…but this weekend…I asked. And, I’m being honest here…it is not “well with my soul.”
To be even more honest…right now…looking into my return visit…I’m not sure not meeting that bar of 30% is “well.”..or will be “well” anytime soon. My heart is broken….and my hope that this drug has indeed had such a strong response is so large…that if I hear a no…it won’t be ok then…I’m giving myself permission that if it occurs…it’s ok to grieve the loss…to not instantly go to that fall break phrase of “God knows best,” because…I will likely question it a thousand times to God if I don’t meet that bar….and given my journey with Jesus and everything the past two years…I understand now…that’s ok…..I can question it…I can be angry …and He understands and He will wait on me until I am “well.” Then I also think…if I meet this first bar….will I selfishly start already asking for the next goal…or will I be “well” just knowing I made it to cycle two?
The song “It Is Well” in so many ways is my life song….some people have a verse that they use…but for me…it’s always been this hymn that has been changed into incredible worship music. Bethel Music has my favorite version and it’s the version on every device I own…the song I play in those moments..those days…those weeks..where it isn’t “well.” I cling to that promise…that hope that I honestly…can’t even understand in these current days where my heart hurts…it aches..for something I had clung to for so long…it’s a loss….something I am going to give myself permission to grieve over…just as I will either be celebrating or grieving an answer in just a few days…and I know now…that it’s allowed…it’s even welcomed….it doesn’t reflect a lack of faith on my part or even an unaccepting heart towards my life here in this temporary home….
So…today, much of this is simply not well with my soul…..but I’ll continue to trust that it will be….and that over the next few days as I look at 30% in a way I never have before…I will trust…even if the answer I don’t want comes….one day…soon…it too, will be well with my soul.