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.
Thursday, August 20, 2015
Wednesday, August 12, 2015
First Follow-Up: Encouraging News
This week marks six-weeks post-cells. I had a CT and MRI, after which I submitted a "Release of Medical Records" form so that I could obtain a copy of the images for my use, as well as a copy of the radiology reports.
On Tuesday (yesterday) the disk was ready. Patrick loaded it onto the computer, while I read the report. We were both stunned. Here's an excerpt from the "Impressions" portion of the report:
Findings consistent with favorable response to therapy, given the decrease in size and conspicuity of multiple bilateral pulmonary metastases without new pulmonary lesions or evidence of other sites of metastases.
No new tumors. Existing tumors are already shrinking!
I was receiving a blood transfusion at the time of this news, so I wasn't able to do a lot of jumping up and down. Or, you know, any jumping up and down. But on the inside, I was in flight, and couldn't wait to speak to my doctor, to get the official word. It was all I could do to keep from dialing his cell right.that.second. I refrained. I thought it best to keep the joyful screaming face-to-face.
Eventually, my doctor did arrive, along with the Lab Guru who played The key role in all things related to my DNA and my TIL. He shared some of his vast knowledge and experience with us, and by the time he was finished explaining his findings so far, we were in awe.
What an amazing afternoon! It was great to see my fellow again, and though the attending physician was someone I didn't know well, she was pleasant and encouraging. She was a bit more reserved in her enthusiasm than I was, preferring that we wait for the next follow-up, which will, according to her, remove any doubt that it could've been the cytoxan and fludarabine (the "conditioning chemo" that I received as part of the treatment) that were responsible for the day's good news.
I accused her of spouting "Loser talk," and would hear none of it.
Me: This is just the first step in a successful treatment. No more loser-talk!
Attending: I have to say the words.
OK then. My next follow-up will be in five weeks. Five short weeks!
Meanwhile:
Go, TIL! Kill the bad guys!
On Tuesday (yesterday) the disk was ready. Patrick loaded it onto the computer, while I read the report. We were both stunned. Here's an excerpt from the "Impressions" portion of the report:
Findings consistent with favorable response to therapy, given the decrease in size and conspicuity of multiple bilateral pulmonary metastases without new pulmonary lesions or evidence of other sites of metastases.
No new tumors. Existing tumors are already shrinking!
I was receiving a blood transfusion at the time of this news, so I wasn't able to do a lot of jumping up and down. Or, you know, any jumping up and down. But on the inside, I was in flight, and couldn't wait to speak to my doctor, to get the official word. It was all I could do to keep from dialing his cell right.that.second. I refrained. I thought it best to keep the joyful screaming face-to-face.
Eventually, my doctor did arrive, along with the Lab Guru who played The key role in all things related to my DNA and my TIL. He shared some of his vast knowledge and experience with us, and by the time he was finished explaining his findings so far, we were in awe.
What an amazing afternoon! It was great to see my fellow again, and though the attending physician was someone I didn't know well, she was pleasant and encouraging. She was a bit more reserved in her enthusiasm than I was, preferring that we wait for the next follow-up, which will, according to her, remove any doubt that it could've been the cytoxan and fludarabine (the "conditioning chemo" that I received as part of the treatment) that were responsible for the day's good news.
I accused her of spouting "Loser talk," and would hear none of it.
Me: This is just the first step in a successful treatment. No more loser-talk!
Attending: I have to say the words.
OK then. My next follow-up will be in five weeks. Five short weeks!
Meanwhile:
Go, TIL! Kill the bad guys!
Friday, August 7, 2015
Here We Go Again...off to NIH
This weekend, my ever-patient husband and I will make the 8-hr. trek back to Bethesda for my first post-treatment follow-up. This is the appointment that everyone from the principle investigator, to the attending, the immunotherapy fellows, the nurses...they all caution, "Don't expect results this soon."
Somehow, the forewarnings of a handful of highly trained medical professionals do not penetrate the skulls of tenacious engineers, however. Our plan is (as always) to get copies of the scans as soon as they're available and continue to track the progression of the tumors' growth. Even if shrinkage isn't yet apparent, we are hoping that the growth-rate will be measurably slower. If the tumors' sizes fall short of the expected growth-curve, we'll dance for joy. (Patrick will dance, I will...clap enthusiastically. I'm a little too weak still to be doing any dancing. Also: neuropathy.)
We pray earnestly that no new tumors will have become evident since the previous scan.
We shall see.
I am not keen to go back, honestly. My strength is improving ever-so-slowly, but it is nowhere near what it needs to be for me to exist "as usual" (pre-treatment). Secretly, I am afraid they might kidnap me and keep me in the hospital for another month. ack! ack! ack!
No. That won't happen. I mean...wait! No, I'm just imagining things.
Somehow, the forewarnings of a handful of highly trained medical professionals do not penetrate the skulls of tenacious engineers, however. Our plan is (as always) to get copies of the scans as soon as they're available and continue to track the progression of the tumors' growth. Even if shrinkage isn't yet apparent, we are hoping that the growth-rate will be measurably slower. If the tumors' sizes fall short of the expected growth-curve, we'll dance for joy. (Patrick will dance, I will...clap enthusiastically. I'm a little too weak still to be doing any dancing. Also: neuropathy.)
We pray earnestly that no new tumors will have become evident since the previous scan.
We shall see.
I am not keen to go back, honestly. My strength is improving ever-so-slowly, but it is nowhere near what it needs to be for me to exist "as usual" (pre-treatment). Secretly, I am afraid they might kidnap me and keep me in the hospital for another month. ack! ack! ack!
No. That won't happen. I mean...wait! No, I'm just imagining things.
Monday, August 3, 2015
Final Day!
Early on Tuesday morning, I wrote a good-bye message on the dry-erase board, gathered up the two photos of my kids that I kept in my room, and collected the greeting cards that filled the window sill. I hurriedly ditched the hospital gown and robe, and put on street clothes for the first time in twenty-four days. I then opened my lap-top and settled into the chair next to the bed to review some information about Our Lady of Guadalupe in the silence of the room. My husband was stuck in traffic on the beltway, but thought he would make our 9:00AM departure time. I expected my immunotherapy fellow, and the attending physician to arrive for (my final!) morning rounds within the next few minutes.
As the doctors, and many others, entered the room, they filtered to the very back of the room, where I sat. I had just made a connection between my K-Ras mutation, the date I was confirmed "terminal", and the Feast Day of Our Lady of Guadalupe (one of the many titles given to Mary, Mother of Jesus). "That is so cool!" I exclaimed, mostly to myself. Then I asked the flock in general, "My mutation was on codon 12, G12D...is that correct?" Someone agreed that that was accurate. "Amazing! This is amazing! Twelve-twelve!!!" I said, crazy-happy and probably sounding like a lunatic.
Me, addressing the flock: Do you know who 'Our Lady of Guadalupe' is? Anybody? Juan Diego?
Flock: < crickets >
The Guy: Our Lady of...?
Me: Guadalupe
The Guy: Our Lady of Guadalupe. No. Never heard of that. And what is the significance of twelve-twelve?
Then he walked around my chair, so that he could see my laptop screen, which displayed a photo of the image that miraculously appeared on Juan Diego's tilma in 1531.
Me: This is an image of Mary, the Mother of Jesus. This image appeared on a peasant man's tilma--cloak...thing. Science has no explanation for how it came to be there, or why it is still there, unchanged to this day. The miracle that happened in Mexico is the reason millions of people converted to Catholicism. GOOGLE IT!
The doctors sort of stared, not knowing, I guess, what to make of my sudden evangelistic outburst.
I continued: "On December 12, I was confirmed terminal. That is also the feast day of Our Lady of Guadalupe--commemorating Dec. 12, the day the image appeared...and now my mutation has two twelves in it, too! How cool is that?"
Someone from the flock quipped, "She's really Catholic."
We all laughed. (It's funny because it's true.)
The Guy said, "Well. Whatever you're doing, keep it up! We can use all the help we can get!"
Me: Hey, I need a photo.
Uncooperative Attending Physician moves out of frame, joining me at the window sill.
Me: After all I've done for you? You can pose for a picture for me.
He reluctantly joined the others.
The Guy, laughing: Usually it's the other way around. Patients normally tell us what we've done for them.
Me: No one has ever considered me "normal" < click!> blurry! again...! <click!> (This one was only slightly less blurry, but I didn't have the strength to try again. I have a horrible, out-dated phone with an abysmal camera.)
Attending Physician: Don't leave before I say good-bye.
Me: Don't wait to say good-bye until after 9:00, because I will be gone.
We said our good-byes, and they all filtered out. Except one. One of the not-my-attending docs hung back and said, "Don't forget a towel."
Me: Hmm?
Not My Attending Doc: I didn't catch the Mary reference, but the one on the board--that one I got.
On the board I had written:
So long, and thanks for all the fish!
<heart>
Celine
I knew that a life-changing event was just now entering a new phase, but all I could think of at that moment was getting home. There would be ample time for reflecting on it all, later. Patrick arrived just moments after the flock left.
We pulled out of the NIH parking lot at 8:58AM.
As the doctors, and many others, entered the room, they filtered to the very back of the room, where I sat. I had just made a connection between my K-Ras mutation, the date I was confirmed "terminal", and the Feast Day of Our Lady of Guadalupe (one of the many titles given to Mary, Mother of Jesus). "That is so cool!" I exclaimed, mostly to myself. Then I asked the flock in general, "My mutation was on codon 12, G12D...is that correct?" Someone agreed that that was accurate. "Amazing! This is amazing! Twelve-twelve!!!" I said, crazy-happy and probably sounding like a lunatic.
Me, addressing the flock: Do you know who 'Our Lady of Guadalupe' is? Anybody? Juan Diego?
Flock: < crickets >
The Guy: Our Lady of...?
Me: Guadalupe
The Guy: Our Lady of Guadalupe. No. Never heard of that. And what is the significance of twelve-twelve?
Then he walked around my chair, so that he could see my laptop screen, which displayed a photo of the image that miraculously appeared on Juan Diego's tilma in 1531.
Me: This is an image of Mary, the Mother of Jesus. This image appeared on a peasant man's tilma--cloak...thing. Science has no explanation for how it came to be there, or why it is still there, unchanged to this day. The miracle that happened in Mexico is the reason millions of people converted to Catholicism. GOOGLE IT!
The doctors sort of stared, not knowing, I guess, what to make of my sudden evangelistic outburst.
I continued: "On December 12, I was confirmed terminal. That is also the feast day of Our Lady of Guadalupe--commemorating Dec. 12, the day the image appeared...and now my mutation has two twelves in it, too! How cool is that?"
Someone from the flock quipped, "She's really Catholic."
We all laughed. (It's funny because it's true.)
The Guy said, "Well. Whatever you're doing, keep it up! We can use all the help we can get!"
Me: Hey, I need a photo.
Uncooperative Attending Physician moves out of frame, joining me at the window sill.
Me: After all I've done for you? You can pose for a picture for me.
He reluctantly joined the others.
The Guy, laughing: Usually it's the other way around. Patients normally tell us what we've done for them.
Me: No one has ever considered me "normal" < click!> blurry! again...! <click!> (This one was only slightly less blurry, but I didn't have the strength to try again. I have a horrible, out-dated phone with an abysmal camera.)
Attending Physician: Don't leave before I say good-bye.
Me: Don't wait to say good-bye until after 9:00, because I will be gone.
We said our good-byes, and they all filtered out. Except one. One of the not-my-attending docs hung back and said, "Don't forget a towel."
Me: Hmm?
Not My Attending Doc: I didn't catch the Mary reference, but the one on the board--that one I got.
On the board I had written:
So long, and thanks for all the fish!
<heart>
Celine
I knew that a life-changing event was just now entering a new phase, but all I could think of at that moment was getting home. There would be ample time for reflecting on it all, later. Patrick arrived just moments after the flock left.
We pulled out of the NIH parking lot at 8:58AM.
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