Friday, April 15, 2016

Will They Let Me Go?

Some drama during what did turn out to be, thankfully, my last night inpatient at NIH had me wondering. The "night thoracic fellow" came in to assess my recovery sometime after 8:00PM. The thinking had been that one more x-ray, the following morning, would be my ticket out of there. Sadly, I seemed to be too puffed up, literally, for it to go that easily.

The thoracic fellow pushed various places around my left chest and side. I could feel the sponginess. After what I thought was quite a lot of him comparing, listening to, and pushing on me, he phoned the thoracic surgeon, "the boss," as he referred to him, to find out what the next step should be.

"The boss" ordered another x-ray for that evening. Off we went. Upon our return, the night nurse offered pain meds, and took vitals. New tonight, and because of the sponginess, she told me that I'd be sleeping "with oxygen." I got to choose between humidified, or non-humidified (humidified, please). She flagged my room as "Do Not Disturb" after she left, and I fell asleep quickly. In the morning, I could tell that the puffiness was worse than it had been the night before. I was at x-ray at 7:00 AM. The tech there recognized me after so many visits, and filled out the sign-in sheet for me.

Shortly after returning to my room, the "daytime thoracic fellow" was there, assessing. She mentioned that they might have to "put in a little chest tube." This was not what I wanted to hear at all. My own fellow came in later, and did his assessment. He advised me to walk around the unit until morning rounds started. This I did, making circuit after circuit. I got light-headed at one point and crashed into my husband's shoulder, unable to move enough air. I thought, "This is it!  They're not going to let me go."

We didn't bother starting to pack up the room. We waited for the doctors to do their rounds. First to round was the immunotherapy team. It was a smallish flock this day, but it did include the principle investigator (The Guy!) The decision about whether I would stay or go was entirely up to the thoracic team. The attending said that the morning's x-ray looked "about the same" as the one from the night before. I didn't know if that was good news or bad news.

A few minutes later, the thoracic surgeon came in with his flock (of one), plus my fellow, to talk to me about how the morning walking went, how I was feeling, and how spongy he felt that I was. After listening to my lungs, and considering for a while, he told me that he was sending me home! Woo Hoo! I am to have a follow-up x-ray at my local hospital in a week, and to mail the disk to NIH.

We were strongly encouraged to include lots of stops during the drive home. The doc suggested that I get out and "do a few laps" every couple of hours. "Walking is the best thing you can do for yourself," he said, and so we did. We stopped five times on our 500+ mile trip.

It's good to be home!

Wednesday, April 13, 2016

What Happened to Tuesday?

So much of my stay this time is a blur. I've been mostly in my room, with two trips to x-ray (morning, and night). I'm visited by nurses throughout the day. They deliver pain meds, post-TIL treatment meds, and they take vital signs every eight hours. There is very little sleep.

With the chest tube, sleeping happened in spurts. I always woke myself when I'd try to change positions. It hurt a lot when I would move in my sleep.

Breathing was another adventure. I managed to pull 2250 ml on the spirometer (volume of air I can inhale). This was a record for me!

Last night, the thoracic surgeon clamped the chest tube closed. This meant the suction box thingy would no longer be helping me (It was pulling air from the space outside the lung, should any be leaking...pretty sure). By clamping the tube shut, the doc rendered it ineffectual. He would be able to tell by how I responded, over the course of 24 hours, whether it was safe to remove the tube itself. Even though the hose was clamped, I was still attached to the box. I eventually named it, "Beelzebub." It went everywhere I went.

More x-rays last night, and this morning. Then! Then! The thoracic doc decided that I would be O.K. to exist minus the chest tube. He pushed down (hard) around the insertion site while the fellow ripped the tube out. She was not quick at this, I am sad to say. It probably felt quick to her, but to me...notsomuch! It was not exactly painful but the longer a procedure takes, the more likely I am to get nauseous. You'd think I'd get used to this stuff, but apparently not.

I was encouraged to walk as much as possible, and to ask for pain meds. They will no longer keep me on a schedule for those (hurray!) My husband and I took a chilly walk around the hospital wing, and then I decided it was time to put on my own clothes!

Tomorrow, I'll have what I hope is the final x-ray during this stay. If it's good, they'll send me home! We have an eight-hour drive ahead of us, but hopefully I'll be able to tolerate it O.K.

† I have since learned that, according to the Patient Handbook, patients are expected to wear their street clothes as much as possible while inpatient. oops.

Monday, April 11, 2016

Queen of X-Rays and of Pain

I am four days post lung surgery.  The chest tube is still doing its thing.  Sort of.  Seems that some air is not making its way to the tube, but instead leaking into other tissues.  I am "spongy", they say.  Who knew that was a thing?  Not me.  The thoracic surgeon says this is not a big deal, so I will believe him.

I've had quite a few x-rays since surgery...par for the course, I'm told.  I've had two per day for the past few days. I'm becoming a familiar face to the techs.

During grand rounds this morning, I asked the Lab Guru for "the scoop," so he stayed after the others had left and told us all about what's happened in the lab so far, and what will happen next. I got to see photos of the two tumors that were in my lung!  ick! ick! ick!

When I saw "Junipero" (who-KNEE-pair-oh), my first reaction was, "So there's the bastard!" My second thought was, " many patients have this opportunity? This is amazing."  Shortly after that, the ick-factor kicked in and my brain shut off.  ha.

Each tumor will be tested in ways that I can't even imagine. It is the first time they've had both a necrotic tumor and a live tumor to study from the same post-TIL patient.

During our conversation, I believe that I solidified my standing of "weirdest patient ever", by accidentally letting the very dear Lab Guru in on the naming convention I have been using all along.  I usually hesitate to reveal this to the medical types, but it just came tumbling out.  "José is dead!  Woo Hoo!"  That little outburst led him to ask, "What's the other one called?"  Yeah, so.

Stop staring at me.

Backing up to yesterday:
It was a horrible, awful day. I woke at 6 AM in excruciating pain. The chest tube was causing back spasms, the insertion wound felt stabby, my shoulder throbbed, and I could not inhale except for what seemed a woefully inadequate amount. I cried. I sat up in my bed and cried and sobbing though--that takes too much air. All I could do was wipe away--over and over--the unstoppable stream of tears that slid down my face.


During this episode, the surgical fellow walked in. She assessed my situation, checked my suction box thingy, and offered some sincere words of condolence. I hate crying, and I especially hate crying while being watched...watched by a stranger. It was humiliating. So there I was, in pain and humiliated. Not a great way to start the day. The doctor left, formulating a plan as she went, I'm sure. Shortly thereafter, meds arrived and things eventually got better. I don't tolerate narcotics well, but a type and dose was found that works without turning my brain to mush. Thank goodness.

According to the thoracic surgeon, as of this morning I still may have an air leak. He's going to try clamping off the chest tube this evening to see how I do. In the morning I'll get another x-ray, and he will maybe remove the tube.

Today, my job is to walk around as much as possible, and to use the incentive spirometer ten times each hour. Patrick is being helpfully (?) anal about this, and has set a timer on his iPhone to remind me when it's time to use the thing again. Six minutes go by quicker than I's a lot of work.

I cannot breathe as deeply as I'd like to, yet. I walk slower than I'd like, but when I speed up, I can't pull in enough air to keep me going. I get light-headed and have to stop. I need to figure out the best pace.

I see the Wandering Priest everywhere I go. I accused him of following me, today. "I follow all my patients," was his reply. I wonder if he bi-locates?  ha ha

Saturday, April 9, 2016

From ICU to Regular Room and NED!

After surgery, I spent some time in the ICU, a place I had never been before.  It reminds me of a refrigerator, in a way.  It was chilly, and there were a lot of stainless steel surfaces... My memories are a bit jumbled, so I'm not sure if these events happened in the order I've recorded them here.

My first memory upon waking up after surgery is of a male nurse talking about "the pain". "She doesn't have that excruciating shoulder pain they always have.  That's a real blessing."  I wondered how he knew about my level of pain.  Maybe I had heard him wrong? Did he say, "scar"...I was confused. He could have said, "She doesn't have that huge scar that people sometimes do..." My left shoulder hurt, and it hurt a lot to breathe due to the chest tube that was (and still is) wedged into my side.  Someone took a chest x-ray while I sat up in the bed.  I only remember that it was a herculean effort to sit upright to facilitate the process.

Breathing hurt. The thoracic surgeon stopped at my bedside and said that the surgery had gone well. He had removed the entire lower left lobe of my lung. The lung was taken directly to the Lab Guru. Pathology would have to wait, because "those immunotherapy guys", as he called my doctors, were adamant that the specimen go to them first. I was beyond thankful to have the tumor gone. ...glad to be awake and alive.

The bed had a balloon-like mattress. I struggled to think. I hurt. I remember opening my eyes--and wishing I had my glasses. Some fuzzy, tall somebody was at the front of the room--a man, washing his hands. Was it a doctor? There was no lab coat. When he turned around I recognized that it was my fellow. Relief. Only then did I realize how scrunched up my face had become from the pain, because as recognition dawned, the tension eased away.

My doctor said something like, "Those meds really take a lot out of you..." to which I muttered, "It's temporary?" "Yes," he said, "It's temporary." I drifted off again.

The next thing I knew, the male nurse was explaining the controller for the PCA (patient-controlled analgesia).  I think it was delivering dilaudid.  I could push the button as often as once every ten minutes, he had said.  The machine would beep twice if it was dosing, or once if I had pushed the button too soon.

The sliding "refrigerator" doors opened again, and in walked an attending physician. This was the doctor who, along with my fellow, had cared for me while I underwent the protocol in July. I hadn't seen him in many months, and was a little alarmed at his presence now. Bedside manner had not been his strong suit, but he did have my respect for other reasons. I couldn't figure out why he would be visiting me. We stumbled through a brief exchange of some sort, then he very deliberately picked up the PCA and clicked the button. "Be sure you use that," he said as he returned the clicker to its former resting spot. Then he left without another word.

The ICU was sterile in appearance and in fact. It was very, very quiet. I had trouble thinking but didn't know whether it was from the pain or the pain meds.

I slept in a half-sitting position. I faced a wall clock, and I woke up almost every hour. Blood pressure measurements were being taken automatically, and the noise the machine made as it sprung into action woke me time and again. I checked the clock each time I woke to see that an hour had passed in what felt like only seconds to me. The clock might as well have been a toy; time had no meaning. I wasn't sure if it was day or night.

Later, a male nurse offered me a bath. I could imagine nothing more absurd at that moment. I wanted to snark, "Are you freaking kidding me right now?" but didn't. I only said in a surprisingly feeble voice, "No. I don't want that." There was no mention of it again. My ears were ringing, and my vision was jumpy. I decided to hit the PCA button less frequently. The nurse helped me get to a chair--this was his idea; not mine. I was content to stay in the bed, but I hobbled very gingerly to the recliner. I was given a welcome cup of ice chips, and later a lemon ice. I noticed that I had two I.V.s, and several new bruises and needle marks on my arms.

Next, they wanted me to have a "proper" x-ray.  This meant traveling to the radiology department.  I was connected to all manner of tubes and wires that seemed to be just everywhere. The nurse somehow got me into a wheelchair amidst the tangles of equipment, and we began the seemingly long journey to x-ray. I could barely stand, so they did the imaging with me sitting on a stool. Two views: side, and front. Then back to ICU.

I tried very hard to make the incentive spirometer move. I could only pull the bare minimum (250 ml) at first, incredibly slowly, and not without a great deal of pain. I kept at it. I knew there were some who were dubious about my refusal of an epidural, but I did not regret my choice. Had I consented to the epidural, they now said, recovery would go faster and with less pain. "It's too late now," I said. The idea of a catheter in my spine was too invasive, too dangerous, too nauseating to me. I remember being relieved that the anesthesiologist had not questioned my choice, but had instead said, "We have other options..."

Each time a new person entered the ICU, they'd tell me that I was going to be moved "to a regular floor" later that day. I'd ask, "Which floor? 3NW?" Always the reply came, "We don't know yet." I really, really did not want to go back to the lymphoma wing.

Then a nurse loaded me, with all of my tubes and wires, into a wheelchair.  As we slowly moved out of the ICU, and down the hall she triumphantly announced, "We're going to 3NW!"

"Hurrayyyyyyyyyyyyyy! That is The.Best.News!!!" I (feebly) fist-pumped the air, and thought that I couldn't be any happier. She wheeled me down a passage where my fellow and some others were eating lunch. The Lab Guru saw us first. He stood as my wheelchair approached, and broke into a huge grin. My fellow turned to see what had got the Guru's attention. "They're taking me 'home' to 3NW!" I babbled, "I'm so happy!" My fellow joked about sending me to a room in the basement instead. ha ha...

This was one of the best days of my life, on par with the days that I heard, "Will you marry me?", and "Meet your new baby." This is the day that my doctor had said would render me--for the first time, ever--NED, no evaluable disease. I was floating.

Thursday, April 7, 2016


Greetings from my hospital room at NIH.  I've been placed (temporarily, I hope) at the lymphoma wing, due to lack of available beds on the immunotherapy ward.

It's lonely over here.

Today, I am scheduled for surgery.  I met the thoracic surgeon yesterday, and we discussed the very real possibility that he will remove the entire lower left lobe of my lung.  Regardless of  how much he ends up taking, I'm guaranteed to wake up with a chest tube.  I am sort of dreading that (not the waking up part, haha).

I'm "in my head" this visit, and not adequately equipped to articulate my thoughts.  I am relying on the knowledge and belief that Grace is given in time and measure according to my need of it.  I am working on re-framing this episode as one of restoring health, rather than focusing on what needs to happen to get there.

I had a visit from the Lab Guru on my first night here.  That was a most-welcome surprise.  He told me that he found four different T cell receptors (TCRs) in my blood that all react to KRAS G12D.  I had heard previously that it was three types, which was pretty stunning.  Four seems even better.  He explained how the fourth one is "very particular" about what it recognizes, and I just sat there listening in utter wonder at how cleverly our immune systems were designed.  He also said that the cells are persisting at a relatively high level, even seven months out, which he thinks is a good sign.  That was the good news.

The bad news is that, since I do have a tumor that is now growing, my case can no longer be described as "Partial Response".  Instead, I've moved to the ultra-depressing category of "Progressive Disease".  It does not change the fact that six of seven tumors have responded (and continue to do so), however, so I need to "get over" the whole labeling thing.  I was never a fan of RECIST criteria, but it's the tool the oncology world uses, so I'm stuck with it.

Today I will have surgery.

I hear, outside my door, the sounds of the Medical Oncology ward waking up:  voices, wheeled carts bumping through the hallway, and doors opening and closing.

I hope that when I awake from surgery, I'll be greeted with the news that I won't be returning to this room, or this wing. My fellow assured me that "they" are doing what they can. He joked that it is "far too long a walk" for him to make in order to do his rounds. "Yeah, we've gotta get you back where you belong," he said.

I couldn't agree more.

Saturday, April 2, 2016

Scratch That

Needle biopsy will not be happening.  Instead, surgery is on the agenda for me.  Next week.

A thoracic surgeon is going to remove the recalcitrant tumor for the purpose of developing a new TIL treatment.  I don't have any details yet.  I'm saving my questions for when I'm back at NIH, and out of ear-shot of certain little people.

What I do know is that I've got some pre-surgical tests in store: EKG, echocardiogram, PET scan, and a lung function test.  I think, aside from cancer, that I am healthy otherwise, so these should not be a roadblock to surgery.

I'm very curious to know what the lab will find when they study this tumor!  Mostly though, I will be glad to know that it's no longer trying to kill me.

Stupid cancer.