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.
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Wednesday, April 13, 2016
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, "Wow...how 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 cried...no 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.
Misery.
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 thought...it'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
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, "Wow...how 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 cried...no 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.
Misery.
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 thought...it'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.
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
Exiled
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.
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.
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.
Thursday, August 20, 2015
In Which the Chemo Port is Removed
Given the very encouraging news from NIH, and knowing that my chemo-port had been woefully neglected* for several months, I decided that it was time to have that thing removed.
I visited the same surgeon who had installed the port almost two years prior. He is also the doc who operated on me initially, soon after diagnosis.
The port would be removed in his office, with me wide awake. Oh, great. I was eager to get rid of the thing, so I wasn't going to let a little thing like revulsion stop me.
His first question to me was, "Are we sure we're done with this?" I showed him the relevant section of the radiologist's report; the same as you may have read about here. He smiled and said, "All right! Let's take it out."
Swabs of some antiseptic, then several shots of lidocaine (ow!). Then a lot of clanking of instruments and nausea-inducing tugs and pains and...comments. Oh, the comments. Could we just not talk about what is happening? Please?
Me: You don't have to tell me what you're doing. I'm not listening. I'm thinking about fluffy kittens and fuzzy baby ducklings.
Him: haha, that's great. You know, usually when I see you, you're under anesthesia. You're much more pleasant to talk to. See, there's this sheath that has grown all around the device. I'm having trouble cutting through it. [dig, pull, cut]
Me: No. Really. No need to tell me! I'm good.
Me [in my head]: What is it with surgeons?!
Him, finally: Ah. There we go! Would you like to keep any part of this for posterity?
Me: ABSOLUTELY NOT. No. Not even a little bit. [gaaack!]
Him: Well, I at least need to show it to you.
Me: WHAT?! No! No, you really don't. I don't want to see that.
And then? He showed it to me! ewwwwwwww...it looked like a giant eyeball with...dangling tubes hanging off of it. yuck. and YUCK. I only just barely glimpsed it because I slammed my eyes shut as soon as I knew what he was up to.
deep breath
So, that was gross. But! It's gone. Gone, gone, all the way gone. No more port. No more chemo. That is the fervent hope, at least. Thank you, Saints in heaven.
We talked about kidney stones and hernias. Not sure what I'll do about either one. He strongly encouraged me to follow up with my urologist about the 10mm stone in my left kidney. So. I will. I had an x-ray tonight, in preparation for an office visit later this month.
...as for the hernia. The surgeon is confident that he can repair it, and informed me that these never go away on their own (rats). I have to decide whether it bothers me enough to want to undergo another surgery. Not sure about that, yet.
Meanwhile, I'm thoroughly enjoying all of the not fainting that I've been doing since the blood transfusion at NIH a few days ago. My hemoglobin was at the low, low value of 7.4. I'm on a mission to make sure it doesn't get that low again--I was way more miserable than I needed to be. Who knew? Nobody knew. I had been improving, and then...not. It was a gradual thing.
Hemoglobin: Yay!
I'm now thinking about lesson plans and gathering the school books. I've got three boys who probably need to be starting (home) school soon! This year I will have boys in grades: 1, 3, and 8.
Third grade is one of the most-challenging (for me...probably for the kid, too). In third grade, they learn to write in cursive and to do long division. Yeah. Important stuff. ...stuff they don't immediately want to do, usually. Perhaps kid #4 will surprise me. You never know.
It's gonna be great!
*Ports of the type I had are supposed to be flushed with heparin and saline every...something...month? After my chemo regimen was over, I'd get the thing flushed at check-ups and scan follow-ups. Eventually, the nurses were not able to use it for drawing blood--ever. I stopped going in to get it flushed after December, when I started actively pursuing the trial at NIH.
I visited the same surgeon who had installed the port almost two years prior. He is also the doc who operated on me initially, soon after diagnosis.
The port would be removed in his office, with me wide awake. Oh, great. I was eager to get rid of the thing, so I wasn't going to let a little thing like revulsion stop me.
His first question to me was, "Are we sure we're done with this?" I showed him the relevant section of the radiologist's report; the same as you may have read about here. He smiled and said, "All right! Let's take it out."
Swabs of some antiseptic, then several shots of lidocaine (ow!). Then a lot of clanking of instruments and nausea-inducing tugs and pains and...comments. Oh, the comments. Could we just not talk about what is happening? Please?
Me: You don't have to tell me what you're doing. I'm not listening. I'm thinking about fluffy kittens and fuzzy baby ducklings.
Him: haha, that's great. You know, usually when I see you, you're under anesthesia. You're much more pleasant to talk to. See, there's this sheath that has grown all around the device. I'm having trouble cutting through it. [dig, pull, cut]
Me: No. Really. No need to tell me! I'm good.
Me [in my head]: What is it with surgeons?!
Him, finally: Ah. There we go! Would you like to keep any part of this for posterity?
Me: ABSOLUTELY NOT. No. Not even a little bit. [gaaack!]
Him: Well, I at least need to show it to you.
Me: WHAT?! No! No, you really don't. I don't want to see that.
And then? He showed it to me! ewwwwwwww...it looked like a giant eyeball with...dangling tubes hanging off of it. yuck. and YUCK. I only just barely glimpsed it because I slammed my eyes shut as soon as I knew what he was up to.
deep breath
So, that was gross. But! It's gone. Gone, gone, all the way gone. No more port. No more chemo. That is the fervent hope, at least. Thank you, Saints in heaven.
We talked about kidney stones and hernias. Not sure what I'll do about either one. He strongly encouraged me to follow up with my urologist about the 10mm stone in my left kidney. So. I will. I had an x-ray tonight, in preparation for an office visit later this month.
...as for the hernia. The surgeon is confident that he can repair it, and informed me that these never go away on their own (rats). I have to decide whether it bothers me enough to want to undergo another surgery. Not sure about that, yet.
Meanwhile, I'm thoroughly enjoying all of the not fainting that I've been doing since the blood transfusion at NIH a few days ago. My hemoglobin was at the low, low value of 7.4. I'm on a mission to make sure it doesn't get that low again--I was way more miserable than I needed to be. Who knew? Nobody knew. I had been improving, and then...not. It was a gradual thing.
Hemoglobin: Yay!
I'm now thinking about lesson plans and gathering the school books. I've got three boys who probably need to be starting (home) school soon! This year I will have boys in grades: 1, 3, and 8.
Third grade is one of the most-challenging (for me...probably for the kid, too). In third grade, they learn to write in cursive and to do long division. Yeah. Important stuff. ...stuff they don't immediately want to do, usually. Perhaps kid #4 will surprise me. You never know.
It's gonna be great!
*Ports of the type I had are supposed to be flushed with heparin and saline every...something...month? After my chemo regimen was over, I'd get the thing flushed at check-ups and scan follow-ups. Eventually, the nurses were not able to use it for drawing blood--ever. I stopped going in to get it flushed after December, when I started actively pursuing the trial at NIH.
Thursday, July 9, 2015
Day 3, and the Hickman Catheter
Day 3 of the clincial trial fell on July 4, Independence Day in the U.S. It was the loneliest day for me to date. The immunotherapy fellows would be rotating out, and new doctors would rotate in. The attending physician would remain the same, however, and I was grateful for that. Nurses I had never met before would care for me over the holiday weekend; all of the familiar ones had the day off. I was feeling lonely and abandoned.
By this time I was familiar with the ebb and flow of the care-givers' routines. Vital signs, weight, and labs were drawn around 5 AM each day. I was given a pill cup with the morning's dose of anti-fungal, anti-yeast, anti-biotic, and anti-inflammatory drugs. A new I.V. bag was hung, and then I was left alone to rest. My sleep was challenged by the constant whirr of the I.V. pumps, and often interrupted by one or more of them sounding an alarm. The equipment seems to alarm most-often when it detects air in the line. Sometimes, the read-out on the machine would indicate "Hit Pause / Restart", which was easy enough to do myself, but more often the loud beeping could only be quieted by a nurse.
Boosted by the prior night's success with eating an apple, I tried another one at breakfast. All good. At lunchtime, I ordered two items, the one I thought I might be able to eat (mac-n-cheese) and a back-up item in case I couldn't handle the first item. I think the second item was toast. I don't remember. When the food arrived, I approached it cautiously. I was able to eat most of the 3 oz. scoop of mac-n-cheese, but it took an inordinate amount of time. Nausea still crowded at the fringes of my appetite, however, I began to anticipate the possibility of being able to eat a baked potato. Not yet! Not yet.
The day dragged along. I slept a lot, and read, and prayed. I skyped with my daughters, who were on a road trip together for the long weekend. I remembered fun times from earlier 4th of July celebrations--time spent preparing loads of picnic fare: homemade chocolate chip cookies, potato salad, and tons and tons of fresh melon, berries, and nectarines. Patrick would always grill something delicious. I missed the food. I missed my family. I was homesick.
At some point, a nurse gave me the wise advice to regard the taking of a daily shower as the most important goal for the day. Neutropenic patients are at risk of infection, and personal hygiene is strongly encouraged--not to include shaving, tweezing, or flossing, however. Those things pose too big a risk. I confess that I was unable to suppress the urge to floss daily (got caught recently--not doing it anymore...sigh). An evening mouth-rinse with sickeningly sweet, gag-worthy fluoridated liquid is expected of the nursing staff. Every single night I had to talk myself into using this gunk. It was never easy.
Showers at this point were best coordinated with the completion of whatever drug was being infused. The nurse could disconnect the I.V. pump, giving me a great sense of freedom for the duration of the shower. My I.V. meds are infused through a Hickman catheter, which in my case includes two "lines", terminating in plastic caps (one red, one blue) that sort of dangle directly from an opening in my chest. The catheter exit site (wound site) is covered with a 3" x 3" mepilex bandage. Normally, they use a transparent dressing, but I am sensitive to adhesive. My skin would blister and itch with the standard dressing. In terms of nursing care, the reality is that instead of cleaning the site and changing the dressing once per week, it must be done daily. The reason is that the low-tack dressings are opaque, thus preventing the staff from being able to note signs of infection at the site.
From underneath the bandage, a single catheter extends outside my body to a plastic junction thingy in which two separate catheters are joined to the initial one. The junction piece connects the three catheters together, forming an upside-down "Y" shape. The catheter is effectively "split" in two, introducing what are called "lumen"--the two branches of the "Y". Each lumen includes it's own clamp and capping hardware. It looks like I have two ball-point pens hanging from a bandage on my chest. One lumen is capped blue; the other red. The junction piece has been secured to the main catheter by the surgeon with (I guess) nylon thread. It is stiff material, like fishing line, which I need to be protected from, in case it were to puncture the skin. To accomplish this, the junction piece is clipped into a little gizmo that provides stability and a mounting surface. This gizmo, then, is anchored to an adhesive patch of some sort, which would normally then be stuck directly on the patient's skin. Since my skin can't tolerate the adhesive on the patch, the surgeon used a piece of duo-derm between my skin and the patch. This whole assemblage of stuff: junction, clip, patch, and duo-derm swatch, sits just below the dressing I described above. These items are permanent fixtures while I'm here, and do not require additional care until the duo-derm layer gets mushy (it has happened only once so far). (Duo-derm is some magical substance that adhesive-sensitive people can tolerate having on their skin for long periods. So far, so good in my case. It is thin, spongy, and flexible.)
Every day since the surgery to place the Hickman catheter, the best part of each day (not counting skyping with the family) has been the changing of the dressing. Each time the nurse peels away the mepilex dressing, my skin rejoices. Next comes a vigorous scrubbing with a wand-thingy (CloraPrep) to remove any dead skin cells, and clean the area. After two minutes of drying time, a fresh dressing is applied. The nurse writes the current date on the dressing, and my skin goes back to being annoyed. Note: "annoyed" is far better than "angry".
I planned to campaign heavily to have the Hickman removed before I am released. Even if it were to delay my departure by days, I would agree to it. That's how much I hate this thing.
By this time I was familiar with the ebb and flow of the care-givers' routines. Vital signs, weight, and labs were drawn around 5 AM each day. I was given a pill cup with the morning's dose of anti-fungal, anti-yeast, anti-biotic, and anti-inflammatory drugs. A new I.V. bag was hung, and then I was left alone to rest. My sleep was challenged by the constant whirr of the I.V. pumps, and often interrupted by one or more of them sounding an alarm. The equipment seems to alarm most-often when it detects air in the line. Sometimes, the read-out on the machine would indicate "Hit Pause / Restart", which was easy enough to do myself, but more often the loud beeping could only be quieted by a nurse.
Boosted by the prior night's success with eating an apple, I tried another one at breakfast. All good. At lunchtime, I ordered two items, the one I thought I might be able to eat (mac-n-cheese) and a back-up item in case I couldn't handle the first item. I think the second item was toast. I don't remember. When the food arrived, I approached it cautiously. I was able to eat most of the 3 oz. scoop of mac-n-cheese, but it took an inordinate amount of time. Nausea still crowded at the fringes of my appetite, however, I began to anticipate the possibility of being able to eat a baked potato. Not yet! Not yet.
The day dragged along. I slept a lot, and read, and prayed. I skyped with my daughters, who were on a road trip together for the long weekend. I remembered fun times from earlier 4th of July celebrations--time spent preparing loads of picnic fare: homemade chocolate chip cookies, potato salad, and tons and tons of fresh melon, berries, and nectarines. Patrick would always grill something delicious. I missed the food. I missed my family. I was homesick.
At some point, a nurse gave me the wise advice to regard the taking of a daily shower as the most important goal for the day. Neutropenic patients are at risk of infection, and personal hygiene is strongly encouraged--not to include shaving, tweezing, or flossing, however. Those things pose too big a risk. I confess that I was unable to suppress the urge to floss daily (got caught recently--not doing it anymore...sigh). An evening mouth-rinse with sickeningly sweet, gag-worthy fluoridated liquid is expected of the nursing staff. Every single night I had to talk myself into using this gunk. It was never easy.
Showers at this point were best coordinated with the completion of whatever drug was being infused. The nurse could disconnect the I.V. pump, giving me a great sense of freedom for the duration of the shower. My I.V. meds are infused through a Hickman catheter, which in my case includes two "lines", terminating in plastic caps (one red, one blue) that sort of dangle directly from an opening in my chest. The catheter exit site (wound site) is covered with a 3" x 3" mepilex bandage. Normally, they use a transparent dressing, but I am sensitive to adhesive. My skin would blister and itch with the standard dressing. In terms of nursing care, the reality is that instead of cleaning the site and changing the dressing once per week, it must be done daily. The reason is that the low-tack dressings are opaque, thus preventing the staff from being able to note signs of infection at the site.
From underneath the bandage, a single catheter extends outside my body to a plastic junction thingy in which two separate catheters are joined to the initial one. The junction piece connects the three catheters together, forming an upside-down "Y" shape. The catheter is effectively "split" in two, introducing what are called "lumen"--the two branches of the "Y". Each lumen includes it's own clamp and capping hardware. It looks like I have two ball-point pens hanging from a bandage on my chest. One lumen is capped blue; the other red. The junction piece has been secured to the main catheter by the surgeon with (I guess) nylon thread. It is stiff material, like fishing line, which I need to be protected from, in case it were to puncture the skin. To accomplish this, the junction piece is clipped into a little gizmo that provides stability and a mounting surface. This gizmo, then, is anchored to an adhesive patch of some sort, which would normally then be stuck directly on the patient's skin. Since my skin can't tolerate the adhesive on the patch, the surgeon used a piece of duo-derm between my skin and the patch. This whole assemblage of stuff: junction, clip, patch, and duo-derm swatch, sits just below the dressing I described above. These items are permanent fixtures while I'm here, and do not require additional care until the duo-derm layer gets mushy (it has happened only once so far). (Duo-derm is some magical substance that adhesive-sensitive people can tolerate having on their skin for long periods. So far, so good in my case. It is thin, spongy, and flexible.)
Every day since the surgery to place the Hickman catheter, the best part of each day (not counting skyping with the family) has been the changing of the dressing. Each time the nurse peels away the mepilex dressing, my skin rejoices. Next comes a vigorous scrubbing with a wand-thingy (CloraPrep) to remove any dead skin cells, and clean the area. After two minutes of drying time, a fresh dressing is applied. The nurse writes the current date on the dressing, and my skin goes back to being annoyed. Note: "annoyed" is far better than "angry".
I planned to campaign heavily to have the Hickman removed before I am released. Even if it were to delay my departure by days, I would agree to it. That's how much I hate this thing.
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