By Monday, my absolute neutrophil count had jumped to 8,000. I was no longer neutropenic, and many of the routine tests that had been happening for the past week were eliminated. My nurse that day made it her business to ensure that visitors to my room were kept to a minimum. She even banished the housekeeping staff!
Sleep evaded me in the hospital. I had been getting no more than two or three hours each night. Sometimes, I'd doze off during the day, but mostly I was just wired. I felt as though I was trapped inside my own body. I was incredibly weak--so weak that I was barely able to trim my nails! (Squeezing those clippers was hard work.) Who could be that weak? It was ridiculous. Each time I took a shower, I would barely make it back to the bed before passing out. I saw stars, and became nauseous.
Still, I was happy that I would be going home soon! Whenever a doctor or nurse came by, I begged for them to tell me whether they would remove the Hickman catheter before sending me home. They wanted to leave it in place to make apheresis at the six-week follow-up appointment easier, but given my sensitive skin, keeping it would've meant daily (normally this would be done only weekly) flushing of the lumens, scrubbing the skin around the wound, and re-dressing. Showers meant extra care and time to secure the lumens and cover them with a huge, transparent dressing (which made my skin itch). I felt that I had good reasons for wanting it removed, but no staff member would give me the slightest inkling about whether my request would be granted. These people are too well-trained.
Finally, on Monday, my fellow sent the Vein Ladies to my room to assess whether or not apheresis could be done using my veins instead of the catheter. Two apheresis nurses appeared at my door that morning; they were the same nurses that had performed the 5-1/2 hour procedure back in April. Each one chose an arm, and they noted the needle marks from April's procedure. After several long minutes of consideration, they gave me the green light! I would not need the Hickman catheter any longer.
Much rejoicing!
Later that same day, my immunotherapy fellow arrived with a pile of equipment. He made a point of showing me the scalpel (ack!) and much to my surprise, he remembered something I had told him days prior about suffering ("...a little suffering never hurt anybody"). He took this opportunity to find out if I was serious about that statement.
Him: So. That thing you said about suffering. You won't be wanting the lidocaine, then?
Me: Hm. How much will it hurt?
Him: It'll hurt. You're getting the lidocaine.
Me: OK then.
He arranged the equipment and injected lidocaine in a couple of places. I think. I wasn't looking. Needle jabs! ack!
Me: Just don't tell me what you're doing. I don't want to know.
Him: OK, turn your head. Right now, I'm injecting the lidocaine, and I'm going to snip these sutures. Oh, look at that! Blood is spurting out...I'll have to mop that up...
Me: What? No! I don't want to hear that stuff. Are you trying to make me pass out?
Him: If you pass out, it makes my job even easier.
Me: You're terrible.
Him: Yeah, so now I'm trying to determine if the cuff had sufficient time to get anchored...I may need to cut the flesh around it to loosen it.
Me [in my head]: stop! stop! stop! I wish I could run away! ack!
Him: Oh. Ha. Look at that. It came right out. We're done.
Me: What? We're done?!
Him [turning to dispose of the long, gangly, catheter parts]: Yeah, you wanna see it?
Me: No, I don't want to see it! GAHHHHHHHH...why would I want to see that?!
Him: OK then. I just have to hold pressure on the wound for a while.
Me [in my head]: My opportunity! bwhahahaaa...
I will not reveal the discussion that ensued, but just imagine that I channeled the good doctor's most annoying and prying relative. I peppered him with inappropriate question after inappropriate question, only stopping when a nurse joined us (darn!). He was stuck holding pressure, and I was relentless in my pursuit to tell him how to live his life.
Sorry, doc. It was all in good fun. A little suffering never hurt anybody.
Friday, July 31, 2015
Thursday, July 30, 2015
Sleen's K-Ras Mutation
What follows is a mash-up of what I learned from the book, "The Emperor of All Maladies," from discussions with my immunotherapy fellow at NIH, and from email correspondence with my new cyber-pal, known as DK37*.
K-Ras is considered an oncogene (a gene that can cause cancer). Colon cancer patients' DNA is typically checked in the earliest days after diagnosis to determine whether the patient is "K-Ras wild-type", or "K-Ras mutated". I was found to be K-Ras mutated back in September, 2013 after my initial surgery. I didn't know much about it at the time, except for the fact that certain drugs that have been found to be effective for "wild-type", would do nothing for me.
As part of the clinical trial at NIH, exomic sequencing was done, which identified my tumors' specific mutations. The researchers found over sixty mutations, but one stood out as particularly interesting to them. It was a mutation in the K-Ras gene. It is referenced this way: codon 12 G12D, and I was told that it is one of the most-common mutations in colorectal cancer (CRC). This designator is explained (ha, sort of) as: On the 12th codon, the twelfth amino acid "G" (glycine) has been replaced by "D" (aspartic acid). "D replacing G"--that is the mutation.
Glycine, I was told, is a small, uncharged amino acid. Aspartic acid, on the other hand, is large and carries a negative charge (the charge is due to a carboxylic acid side-chain, according to my friend the medicinal chemist). Anyway, the negative charge blocks a cell's normal "stop dividing" instruction. The cell's "off switch" is effectively ignored, and so growth continues unchecked, forming tumors that grow without ceasing.
Fortunately for me, the tumors in my lungs have grown very slowly. I would like to think that this is because I have been producing large numbers of tumor infiltrating lymphocytes (TILs) all along, but I have no way of knowing. The aim of the clinical trial is to find TILs that are already working to remove cancerous cells in the patient, to multiply those, and to return them to the patient. "Building up the army", is how many people think of it.
The researchers had success in the lab! They discovered TILs in the harvested lung tumors that recognize the mutation in the K-Ras gene and are "reactive" to it. If the 148-billion TILs they returned to me on July 1 are as effective in me as they were in the lab, we should expect to see shrinkage of my lung tumors by 12-weeks post-cells. This is my great hope! Alas, there are no guarantees.
* Super Genius
K-Ras is considered an oncogene (a gene that can cause cancer). Colon cancer patients' DNA is typically checked in the earliest days after diagnosis to determine whether the patient is "K-Ras wild-type", or "K-Ras mutated". I was found to be K-Ras mutated back in September, 2013 after my initial surgery. I didn't know much about it at the time, except for the fact that certain drugs that have been found to be effective for "wild-type", would do nothing for me.
As part of the clinical trial at NIH, exomic sequencing was done, which identified my tumors' specific mutations. The researchers found over sixty mutations, but one stood out as particularly interesting to them. It was a mutation in the K-Ras gene. It is referenced this way: codon 12 G12D, and I was told that it is one of the most-common mutations in colorectal cancer (CRC). This designator is explained (ha, sort of) as: On the 12th codon, the twelfth amino acid "G" (glycine) has been replaced by "D" (aspartic acid). "D replacing G"--that is the mutation.
Glycine, I was told, is a small, uncharged amino acid. Aspartic acid, on the other hand, is large and carries a negative charge (the charge is due to a carboxylic acid side-chain, according to my friend the medicinal chemist). Anyway, the negative charge blocks a cell's normal "stop dividing" instruction. The cell's "off switch" is effectively ignored, and so growth continues unchecked, forming tumors that grow without ceasing.
Fortunately for me, the tumors in my lungs have grown very slowly. I would like to think that this is because I have been producing large numbers of tumor infiltrating lymphocytes (TILs) all along, but I have no way of knowing. The aim of the clinical trial is to find TILs that are already working to remove cancerous cells in the patient, to multiply those, and to return them to the patient. "Building up the army", is how many people think of it.
The researchers had success in the lab! They discovered TILs in the harvested lung tumors that recognize the mutation in the K-Ras gene and are "reactive" to it. If the 148-billion TILs they returned to me on July 1 are as effective in me as they were in the lab, we should expect to see shrinkage of my lung tumors by 12-weeks post-cells. This is my great hope! Alas, there are no guarantees.
* Super Genius
Wednesday, July 29, 2015
Day 11 post-Cells: I'm a What?
Day 11 of the trial corresponded to Day 22 in the hospital. It was a Sunday.
During morning rounds, again just two doctors visited. This time the on-call fellow was joined by the attending doc who had been with me since I arrived at NIH. My bone marrow was waking up, and there was talk of me going home "by Wednesday," at the latest. (ANC this day was 3460. Previous values were: 1300, 330, 90, 10, 0, 0, 0...) The docs fully expected that I would reach the required "third consecutive ANC over 1,000" by Monday. My platelet counts were rising, too.
I chirped about being released on Bastille Day. I thought it would be poetic, being "released" and all. O.K. so I wasn't a political prisoner... The attending sort of looked at me like I was a loon, and seemed eager to escape the crazy person's room. ha.
Me: Hey wait!
Attending: [stops dead in his tracks] Yes?
Me: The Guy visited me yesterday.
Attending: [pulls up a chair] Oh he did? I thought he might.
Me: Yes. He did. And...[pointing to on-call fellow] she can corroborate! The Guy called me a "pioneer". How is that possible, that The Pioneer called me a "pioneer"? Is that just his way of encouraging people? Does he say this to everybody?
Attending: No. No, he wouldn't do that. <thoughtful> Lemme tell you...he is The Pioneer, but if he is, then you're the wagon wheel.
Me: Immawhat?
Attending: You're the wheel on the wagon that he's riding in on.
Me: Well! I'm the wagon wheel. <confused> O.K. Could you explain just what we're talking about here? Because: sleep deprivation. (words to that effect)
Attending: Mrs. Ryan, my (theoretical) tumors and your tumors have different genetic mutations. Even if we have the same disease (colon cancer), our tumors are not the same genetically. Your tumors are producing a "target" that your specific white blood cells (TIL) can "see." It's very exciting to us because the mutation your cells are recognizing is like the Cadillac of mutations--everyone has high interest in K-RAS mutations. The potential--who knows how far in the future--may be that instead of these "one-off" cures we are getting, there is the potential that because of your cells, future cancer patients with the same tumor mutation and the same HLA blood type may be able to be cured with an "off-the-shelf" treatment.
Me: <blink. blink.>
Attending: Of course, we won't know anything for sure for months.
Me [in my head]: They keep saying that.
They both left then, and for the second day in a row I sat alone in the hospital room with information that was almost too-good-to-be-true.
I started thinking about all of the questions that I would ask my own fellow when I would see him the following morning. Poor doc.
During morning rounds, again just two doctors visited. This time the on-call fellow was joined by the attending doc who had been with me since I arrived at NIH. My bone marrow was waking up, and there was talk of me going home "by Wednesday," at the latest. (ANC this day was 3460. Previous values were: 1300, 330, 90, 10, 0, 0, 0...) The docs fully expected that I would reach the required "third consecutive ANC over 1,000" by Monday. My platelet counts were rising, too.
I chirped about being released on Bastille Day. I thought it would be poetic, being "released" and all. O.K. so I wasn't a political prisoner... The attending sort of looked at me like I was a loon, and seemed eager to escape the crazy person's room. ha.
Me: Hey wait!
Attending: [stops dead in his tracks] Yes?
Me: The Guy visited me yesterday.
Attending: [pulls up a chair] Oh he did? I thought he might.
Me: Yes. He did. And...[pointing to on-call fellow] she can corroborate! The Guy called me a "pioneer". How is that possible, that The Pioneer called me a "pioneer"? Is that just his way of encouraging people? Does he say this to everybody?
Attending: No. No, he wouldn't do that. <thoughtful> Lemme tell you...he is The Pioneer, but if he is, then you're the wagon wheel.
Me: Immawhat?
Attending: You're the wheel on the wagon that he's riding in on.
Me: Well! I'm the wagon wheel. <confused> O.K. Could you explain just what we're talking about here? Because: sleep deprivation. (words to that effect)
Attending: Mrs. Ryan, my (theoretical) tumors and your tumors have different genetic mutations. Even if we have the same disease (colon cancer), our tumors are not the same genetically. Your tumors are producing a "target" that your specific white blood cells (TIL) can "see." It's very exciting to us because the mutation your cells are recognizing is like the Cadillac of mutations--everyone has high interest in K-RAS mutations. The potential--who knows how far in the future--may be that instead of these "one-off" cures we are getting, there is the potential that because of your cells, future cancer patients with the same tumor mutation and the same HLA blood type may be able to be cured with an "off-the-shelf" treatment.
Me: <blink. blink.>
Attending: Of course, we won't know anything for sure for months.
Me [in my head]: They keep saying that.
They both left then, and for the second day in a row I sat alone in the hospital room with information that was almost too-good-to-be-true.
I started thinking about all of the questions that I would ask my own fellow when I would see him the following morning. Poor doc.
Tuesday, July 28, 2015
Day 10 post-Cells: A Visit from The Guy
On my 21st day in the hospital, I had a surprise visitor.
It was a Saturday. Morning rounds happened a couple of hours later on weekends than they did during the week. I expected to see the on-call fellow ("my" fellow was off that weekend), and the attending physician. At around 11:00 AM, the knock. "White coats", I could tell that much immediately. There were two of them, but instead of the attending doc, who I was expecting, it was the principle investigator of the trial. The Guy.
What?
The Guy and the on-call immunotherapy fellow strolled in and stopped at the foot of my bed.
The Guy was often among the big crowd of doctors I would see on Mondays during "grand rounds"; due to the rash, and the Rh drama, I'd seen the flock many more times than maybe what is typical. TG usually was just one of the pack, and the attending doc would do all of the talking. TG wrote the book, literally, on immunotherapy. He's been working on this for decades.
So, there he was, The Guy, standing at the foot of my bed on a quiet Saturday morning, grinning.
It was a Saturday. Morning rounds happened a couple of hours later on weekends than they did during the week. I expected to see the on-call fellow ("my" fellow was off that weekend), and the attending physician. At around 11:00 AM, the knock. "White coats", I could tell that much immediately. There were two of them, but instead of the attending doc, who I was expecting, it was the principle investigator of the trial. The Guy.
What?
The Guy and the on-call immunotherapy fellow strolled in and stopped at the foot of my bed.
The Guy was often among the big crowd of doctors I would see on Mondays during "grand rounds"; due to the rash, and the Rh drama, I'd seen the flock many more times than maybe what is typical. TG usually was just one of the pack, and the attending doc would do all of the talking. TG wrote the book, literally, on immunotherapy. He's been working on this for decades.
So, there he was, The Guy, standing at the foot of my bed on a quiet Saturday morning, grinning.
Me: Wow, you look happy. Good Morning.
TG: Good Morning Mrs. Ryan. I wanted to tell you again how excited we are about your cells.
Me: Yeah...me too. <still not grasping what these people are talking about> So. Someone told me that I'm the first to have cells that reacted against KRAS ("crass")?
TG: K-RAS ("KAY-rass"), he corrected. You are not the first to react, but you are the first who had many cells returned to you that reacted against K-RAS.
Me: <pondering that comment...> Tell me about K-RAS...if you have time.
TG: It is a gene mutation. It is a mutation from your normal DNA. We know that it is involved in colon cancer and many other cancers.
Me: So what have you learned about my case in particular? Anything, yet?
TG: No, no. It's far too early for that. Far too early. We don't expect to see results for months.
Me: Ah. People keep saying that.
TG: You should visualize those wonderful TILs attacking all of the tumors.
Me: Oh, I do! I have been doing that for a long time.
TG: Good! Good. Mrs. Ryan, you are a pioneer. <pats the foot of the bed, then heads for the door>
Me [in my head]: ...ima what?! What did he say?...pioneer?!
Me: HURRAY for pioneers! The only problem with being a pioneer is all of these arrows in my back.
TG: <stops, turns toward me> Mrs. Ryan, we are going to pull those arrows out of you, one by one.
Me: That would be awesome.
Then he and the fellow left, and I had a moment of wondering whether or not I had just hallucinated the entire story. Hmmm...nope. Don't think so! Holy beans.
The Pioneer himself called me a "pioneer". What in the world?...
Monday, July 27, 2015
Day 9 post-Cells and Mephistopheles
Day 9 was a Friday. What happened Friday is a blur, but I do remember vividly the early morning routine. I was not needing I.V. meds much anymore, but did still need a 15-min. infusion of an antibiotic on Friday evening. My night nurse, C., chatted w/me about her family, and we commiserated about what it is like to have children who are learning to drive (For The Record: Terrifying on Every Level).
When 5:00 AM rolled around, C. came back to draw labs, and the twenty-billion other things that were now so routine that I gave none of them any thought (lift your arm for the blood pressure cuff, hold out the opposite hand for the O2 gizmo...next the stethoscope...blood draws via the H.catheter...). When it came time to provide a daily urine sample (one of the mortifications of life in the hospital), I dutifully donned my slippers, grabbed the ever-present I.V. pole, and shuffled my way to the bathroom, which was about ten steps from my bed.
It was only as I stood at the sink washing up that I realized: I wasn't connected to the I.V. pole! Sometime during the night, C. must've disconnected me without my knowledge. I was so used to dragging that pole around with me, it was now my habit.
I laughed like a lunatic as I threw open the bathroom door, and shoved the pole out ahead of me, letting it roll into the room on its own.
Me: < laughing > Do you know what I just did?!?
Nurse C: Oh my gosh! < doubled over, laughing > I thought I forgot to disconnect you!
Me: That is really pathetic.
Nurse C: < howling > Oh, I can't stand it! Don't worry, I won't tell anyone. <nabs first nurse to walk past in the hallway, then tells her the whole story.>
Me: That's right, kick a patient when she's down. I see how it is...it's O.K. I can take it...
I was happy for the laughter, because the neupogen shots I'd been getting each night (to wake up my bone marrow) had started to hurt quite a lot. Laughter made me forget the pain for a while.
I texted one of my friends a shortened version of the story.
Me: Just brought the I.V. pole to the restroom, even though I wasn't connected.
Friend: Maybe you should give that thing a name, if it's going to be hanging around so much.
Me: Yeah...something onerous. Like...Mephistopheles. Ha! That's it.
So, from that day forward, my I.V. pole was known as Mephistopheles, or "Meph" for short.
I had been listening to "Beethoven's Last Night," a rock-opera by Trans-Siberian Orchestra (TSO). Here's a written version of the story. Mephistopheles is the devil, who tries to trick Beethoven into surrendering all of his music.
On Friday, my ANC reached 330, up from 90 the previous day, and 10 the day prior to that. Things were moving in the right direction.
When 5:00 AM rolled around, C. came back to draw labs, and the twenty-billion other things that were now so routine that I gave none of them any thought (lift your arm for the blood pressure cuff, hold out the opposite hand for the O2 gizmo...next the stethoscope...blood draws via the H.catheter...). When it came time to provide a daily urine sample (one of the mortifications of life in the hospital), I dutifully donned my slippers, grabbed the ever-present I.V. pole, and shuffled my way to the bathroom, which was about ten steps from my bed.
It was only as I stood at the sink washing up that I realized: I wasn't connected to the I.V. pole! Sometime during the night, C. must've disconnected me without my knowledge. I was so used to dragging that pole around with me, it was now my habit.
I laughed like a lunatic as I threw open the bathroom door, and shoved the pole out ahead of me, letting it roll into the room on its own.
Me: < laughing > Do you know what I just did?!?
Nurse C: Oh my gosh! < doubled over, laughing > I thought I forgot to disconnect you!
Me: That is really pathetic.
Nurse C: < howling > Oh, I can't stand it! Don't worry, I won't tell anyone. <nabs first nurse to walk past in the hallway, then tells her the whole story.>
Me: That's right, kick a patient when she's down. I see how it is...it's O.K. I can take it...
I was happy for the laughter, because the neupogen shots I'd been getting each night (to wake up my bone marrow) had started to hurt quite a lot. Laughter made me forget the pain for a while.
I texted one of my friends a shortened version of the story.
Me: Just brought the I.V. pole to the restroom, even though I wasn't connected.
Friend: Maybe you should give that thing a name, if it's going to be hanging around so much.
Me: Yeah...something onerous. Like...Mephistopheles. Ha! That's it.
So, from that day forward, my I.V. pole was known as Mephistopheles, or "Meph" for short.
I had been listening to "Beethoven's Last Night," a rock-opera by Trans-Siberian Orchestra (TSO). Here's a written version of the story. Mephistopheles is the devil, who tries to trick Beethoven into surrendering all of his music.
On Friday, my ANC reached 330, up from 90 the previous day, and 10 the day prior to that. Things were moving in the right direction.
Sunday, July 26, 2015
The Worst Day Ever, Part 2
As happened many, many times during my stay at NIH, a friend would text at just the moment when I needed him or her the most. When the flock of doctors had left the room after delivering the news about the Rh-positive platelets, I received a text from a friend: "How are you doing today?" I replied something like, "Not good. Please pray." but gave no details. There was too much to explain.
Someone knocked on the door, calling, "Nutrition!", and entered with a lunch tray. I was in no mood for lunch. Just then, a visitor entered the room. I recognized her as the (Roman Catholic) Eucharistic Minister. She was filling in for the Wandering Priest, she said, because he wouldn't be at the hospital that day.
When the woman looked at me, it was not with pity, or concern, but profound compassion. She apologized for interrupting my lunch, and asked if she could sit down.
She sat across from me, in a chair facing mine next to the window. The tray-table separated us. I did not touch the food, but instead spent the next hour or so telling her the story--at her request--of how I came to be at the NIH. I started with stories of my kids, and about the sorts of things we did as a family--our walks to Mass, and how the boys loved rainy days the most because on those days we all got to carry umbrellas. I showed her a picture on my phone of my three little boys and their umbrellas, the middle boy's head completely hidden by his blue umbrella. I shared how my diagnosis came about, and what I experienced the night before my initial surgery:
When meditating on what a diagnosis of cancer might mean, I had the overwhelming sense that I would be protected from fear, no matter where the path ahead took me.
I went on to explain that I saw myself talking to Mary, the Mother of Jesus. In a way that I can't explain, I became acutely aware that I would suffer. I felt like I was being told (but I did not hear an audible voice) that what I would endure was absolutely necessary, and it could not be avoided. In some way, I knew that no one could stand in my place--for some reason, it had to be me. I was the one who had to undergo whatever was to come. I was not promised healing, but I mentally accepted whatever lay ahead. I had the overwhelming sense that good was going to come from my disease. I did not know if the "good" would lead to a cure for me, but I trusted that some plan was underway and that my job was to cooperate. I was at peace with it. All worry drained away.
The Eucharistic Minister sat and listened intently. I asked her if she knew who St. Louis de Montfort was. She did. I explained that after the birth of my fifth child, in 2009, I had followed St. Louis' formula for Total Consecration. She was familiar with the devotion. I explained how I had had to reconcile myself to the fact that God's plan might include someone else raising my children instead of me. I told her that the only way I was able to accept this idea was because I believe with everything that I am, that God loves my children even more than I do. I knew that cancer might take my life. Thinking of my kids missing me was almost too much to bear. I had to surrender to God's Will. I had to trust like never before. Whatever the outcome, God could and would use it for His glory. He would not abandon my children..."my children" have in truth been His all along. In fact, even with all of the turmoil, set-backs, and pain that led to me getting to NIH (posts re: failed needle biopsy, here and here which is my new standard for how much something can possibly hurt), I could honestly say, I was protected from fear. Fear gets in the way of faith. I learned this lesson well. I knew, too, that my time at NIH might not lead to a cure for me, but I firmly believed (and do believe) that participating in the TIL clinical trial was what I was meant to do.
We were both in quiet tears.
Talking with this visitor was just what I needed, but now it was my turn to listen. She shared with me the story of her husband's cancer diagnosis. He had had a glioblastoma, cancer in the brain. She told me of his willingness to undergo a clinical trial some fifteen years prior, at the very hospital where we both now sat. The group of patients that underwent that trial, she said, were among the first to receive IL-2. Her husband's side-effects from the substance--the same one I wrote about here and here, and which caused me no side-effects--had cost her husband his life. His brain had swelled uncontrollably from the treatment, and he died.
I don't know how long we talked. When we finished, we assured each other of our prayers, and gave each other permission to re-tell our stories. She shared the Eucharist with me, and we prayed together.
I felt some relief then, but was still restless and annoyed about the Rh-positive platelets. I was to receive another transfusion of platelets that day, and though better, my mood was still one of agitation and loneliness.
My fellow strode in then, as he always did, to check on me before the rest of the doctors came door-to-door on their afternoon rounds. He knew that it was a Very Bad Day for me, and he attempted to lift my spirits in what I considered at the time a most uninspired way.
him: I'm gonna see if Recreational Therapy can come up here to you.
me: You're sentencing me to weave pot-holders?! < scoff >
fellow: I am going to speak to the infusion specialist about what happened. I will let you know what he says.
He left then, and returned later on rounds with the attending physician and several others. The attending physician asked where my husband was, and "Couldn't we get a visit from your kids arranged?"
I explained that my husband's current view of the children was that they are, "walking petri dishes of germs," and that he had forbidden any visitors, including himself, while I was neutropenic.
The doctors filtered out as they always did. The infectious disease specialist hung back a bit, offering a comment, sort of over his shoulder as he walked out, "I can't disagree with your husband."
I was left alone again, to stare out my window-without-a-view. Depression began to settle like an angry fog.
Sometime that afternoon, the fellow returned, swooping in triumphantly with a six-page document, freshly printed and stapled. "Here," he encouraged, "read this. We'll talk about it later. I have my own copy." He explained that he had mentioned to the infusion specialist that he "had this patient who wants to know everything..." The specialist then found an article that had been published in the British Journal of Haematology titled, "Low frequency of anti-D alloimmunization following D+ platelet transfusion: the Anti-D Alloimmunization after D-incompatible Platelet Transfusions (ADAPT) study." He made the fellow a copy, and one for me, too. "She may find this of interest..."
Well then. This was a far cry from weaving pot-holders! I was immediately shaken from my loneliness and gloom. I had been given a project to tackle! Who knew if I would be able to understand a word of it; the fact that these two gentlemen had taken the time to find that study to ease my mind was almost incredible to me. Any doubts that I may have had about the care I was receiving had vanished in that moment.
My doctor returned at the end of his work-day and went over the study step-by-step with me. Though I was at diminished capacity, due to lack of sleep, I was able to keep up, contribute, and agree that the odds of me becoming sensitized from the transfusions I received were very slight indeed, if the medical journal article was accurate.
The Worst Day Ever was over. When I awoke the next morning, the dark cloud was gone. Confidence in my medical team, and in the institution of NIH itself was restored by that one act of perception and kindness on the part of my immunotherapy fellow. I will never forget it.
Someone knocked on the door, calling, "Nutrition!", and entered with a lunch tray. I was in no mood for lunch. Just then, a visitor entered the room. I recognized her as the (Roman Catholic) Eucharistic Minister. She was filling in for the Wandering Priest, she said, because he wouldn't be at the hospital that day.
When the woman looked at me, it was not with pity, or concern, but profound compassion. She apologized for interrupting my lunch, and asked if she could sit down.
She sat across from me, in a chair facing mine next to the window. The tray-table separated us. I did not touch the food, but instead spent the next hour or so telling her the story--at her request--of how I came to be at the NIH. I started with stories of my kids, and about the sorts of things we did as a family--our walks to Mass, and how the boys loved rainy days the most because on those days we all got to carry umbrellas. I showed her a picture on my phone of my three little boys and their umbrellas, the middle boy's head completely hidden by his blue umbrella. I shared how my diagnosis came about, and what I experienced the night before my initial surgery:
When meditating on what a diagnosis of cancer might mean, I had the overwhelming sense that I would be protected from fear, no matter where the path ahead took me.
I went on to explain that I saw myself talking to Mary, the Mother of Jesus. In a way that I can't explain, I became acutely aware that I would suffer. I felt like I was being told (but I did not hear an audible voice) that what I would endure was absolutely necessary, and it could not be avoided. In some way, I knew that no one could stand in my place--for some reason, it had to be me. I was the one who had to undergo whatever was to come. I was not promised healing, but I mentally accepted whatever lay ahead. I had the overwhelming sense that good was going to come from my disease. I did not know if the "good" would lead to a cure for me, but I trusted that some plan was underway and that my job was to cooperate. I was at peace with it. All worry drained away.
The Eucharistic Minister sat and listened intently. I asked her if she knew who St. Louis de Montfort was. She did. I explained that after the birth of my fifth child, in 2009, I had followed St. Louis' formula for Total Consecration. She was familiar with the devotion. I explained how I had had to reconcile myself to the fact that God's plan might include someone else raising my children instead of me. I told her that the only way I was able to accept this idea was because I believe with everything that I am, that God loves my children even more than I do. I knew that cancer might take my life. Thinking of my kids missing me was almost too much to bear. I had to surrender to God's Will. I had to trust like never before. Whatever the outcome, God could and would use it for His glory. He would not abandon my children..."my children" have in truth been His all along. In fact, even with all of the turmoil, set-backs, and pain that led to me getting to NIH (posts re: failed needle biopsy, here and here which is my new standard for how much something can possibly hurt), I could honestly say, I was protected from fear. Fear gets in the way of faith. I learned this lesson well. I knew, too, that my time at NIH might not lead to a cure for me, but I firmly believed (and do believe) that participating in the TIL clinical trial was what I was meant to do.
We were both in quiet tears.
Talking with this visitor was just what I needed, but now it was my turn to listen. She shared with me the story of her husband's cancer diagnosis. He had had a glioblastoma, cancer in the brain. She told me of his willingness to undergo a clinical trial some fifteen years prior, at the very hospital where we both now sat. The group of patients that underwent that trial, she said, were among the first to receive IL-2. Her husband's side-effects from the substance--the same one I wrote about here and here, and which caused me no side-effects--had cost her husband his life. His brain had swelled uncontrollably from the treatment, and he died.
I don't know how long we talked. When we finished, we assured each other of our prayers, and gave each other permission to re-tell our stories. She shared the Eucharist with me, and we prayed together.
I felt some relief then, but was still restless and annoyed about the Rh-positive platelets. I was to receive another transfusion of platelets that day, and though better, my mood was still one of agitation and loneliness.
My fellow strode in then, as he always did, to check on me before the rest of the doctors came door-to-door on their afternoon rounds. He knew that it was a Very Bad Day for me, and he attempted to lift my spirits in what I considered at the time a most uninspired way.
him: I'm gonna see if Recreational Therapy can come up here to you.
me: You're sentencing me to weave pot-holders?! < scoff >
fellow: I am going to speak to the infusion specialist about what happened. I will let you know what he says.
He left then, and returned later on rounds with the attending physician and several others. The attending physician asked where my husband was, and "Couldn't we get a visit from your kids arranged?"
I explained that my husband's current view of the children was that they are, "walking petri dishes of germs," and that he had forbidden any visitors, including himself, while I was neutropenic.
The doctors filtered out as they always did. The infectious disease specialist hung back a bit, offering a comment, sort of over his shoulder as he walked out, "I can't disagree with your husband."
I was left alone again, to stare out my window-without-a-view. Depression began to settle like an angry fog.
Sometime that afternoon, the fellow returned, swooping in triumphantly with a six-page document, freshly printed and stapled. "Here," he encouraged, "read this. We'll talk about it later. I have my own copy." He explained that he had mentioned to the infusion specialist that he "had this patient who wants to know everything..." The specialist then found an article that had been published in the British Journal of Haematology titled, "Low frequency of anti-D alloimmunization following D+ platelet transfusion: the Anti-D Alloimmunization after D-incompatible Platelet Transfusions (ADAPT) study." He made the fellow a copy, and one for me, too. "She may find this of interest..."
Well then. This was a far cry from weaving pot-holders! I was immediately shaken from my loneliness and gloom. I had been given a project to tackle! Who knew if I would be able to understand a word of it; the fact that these two gentlemen had taken the time to find that study to ease my mind was almost incredible to me. Any doubts that I may have had about the care I was receiving had vanished in that moment.
My doctor returned at the end of his work-day and went over the study step-by-step with me. Though I was at diminished capacity, due to lack of sleep, I was able to keep up, contribute, and agree that the odds of me becoming sensitized from the transfusions I received were very slight indeed, if the medical journal article was accurate.
The Worst Day Ever was over. When I awoke the next morning, the dark cloud was gone. Confidence in my medical team, and in the institution of NIH itself was restored by that one act of perception and kindness on the part of my immunotherapy fellow. I will never forget it.
Saturday, July 25, 2015
The Worst Day Ever, Part 1
On Day 7, despite a transfusion of platelets on both Day 3 and Day 6, my counts were still not recovering. I developed an itchy, bright red rash that covered way more of my body than I care to remember. Some docs thought it might be petechiae-gone-crazy, others thought perhaps "heat rash". All seemed content to blame the platelet infusions. I was given a cooling sort of lotion, which relieved the itch somewhat. Later, they prescribed nystatin powder. This seemed to help even more than the lotion had. (Petechiae looks like pin-prick-sized red dots all over the skin, but what I had was a solid, deep coloring that appeared in wide swaths over various parts of my body.)
More fun, I developed an incredibly dark, purple-y bruise on my right upper arm. This hid just below the sleeve of my gown, and happened to be located on the arm most-chosen for blood-pressure measurements and neupogen shots. Nurses routinely gasped when they lifted the sleeve of the gown and found themselves staring at such a battered hunk of flesh.
Nurse duJour: Where'd that come from?
Me: Do you know < insert name of favorite nurse >?
N dJ: Yes...why?
Me: She hit me!
hahaha...
I still don't know how I got that bruise (and it remains on my arm to this day, though it is fading). Of course, no NIH nurse would ever punch a patient! They all went "above and beyond" in their care for me. As did the doctors. Despite what I'm about to tell you next.
Up until Day 8 post-cells, I would wake from my two or maybe three hours of nightly sleep with either a song in my head, or what seemed like someone happily shouting (why shouting, I don't know) a prayer from the rosary (most often this one: "Hail Holy Queen..."). On Day 8 though, I woke to utter silence. Something seemed "off". I felt incredibly lonely. It was Day 8 post-cells, but Day 19 in the hospital with no sign of when my bone-marrow might bounce back. Though the previous day's ANC (absolute neutrophil count) came in at a (not!) whopping "10", I was told not to get my hopes up; it could mean nothing.
It was 6:00 AM. I slogged out of bed, over to the chair that waited by the window. I faced toward the only sliver of sky that I could see from my room, up above the glass walkways that connected the upper floors of two wings of the building. As I prayed a rosary, I noticed my fellow walking through the glass-encased walkway towards the 3NW wing. I knew that in a matter of minutes he would stride into the room without knocking, as he did every morning. I would have plenty of time to finish the rosary before he arrived. I offered prayers for him, and for the rest of the staff, too.
He came in without greeting me, and sat on the edge of the bed. He leaned forward slightly, his hands folded in front of him, his expression serious. He looked past me, out the window.
him: I have something to tell you
me: m'kay
him: We have been giving you Rh-positive platelets.
me, horrified: WHAT?!? What are you trying to do kill me?
him: < silence ...then > ...we're discussing it. We are going to talk about it at rounds. I think it may only impact you if you are intending to have more children. We will talk about it at rounds. I will be back soon.
me, calmer: OK. < long pause > I woke up so homesick. <fighting tears> Do you have anything that can take homesickness away? (Of course, I knew that he didn't.)
him: < long pause > I wish I did. I will be back for rounds soon.
He left. Silent tears streamed down my face. I stared out the window, at the tiny sliver of sky that wasn't blocked by the brick walls of the building. I prayed that I would regain my composure as I faced what the flock of doctors would tell me.
My Rh-negative status was linked to some powerful, tragic memories which came flooding into my mind as I waited for the doctors' return.
What did it mean to be Rh-negative, and receive Rh-positive platelets? How could platelets be Rh-positive? I had no idea. Could it be the cause of the horrible rash?... A more horrifying thought: Would it impact my immune system? Would it affect the TIL treatment?
I was ignorant, and so terribly tired.
A few minutes later a flock of white-coated doctors entered my room. The attending physician took the floor, explaining what the fellow had just covered. He then referred to his peer, who he said, was more experienced with this question. That doctor encouraged me to get a rhoGAM shot.
I had questions. How would rhoGAM affect me, given the fact that I had no immune system to speak of? What were the ramifications if I did not get the rhoGAM? Was it too late already?--the first platelet infusion was five days earlier. With all of the pharmaceuticals coursing through my system already, would it be wise to add one more?... How dangerous is this situation, and did you know this happened before today? Why wasn't I informed ahead of time that this was a possibility...
What I could not verbalize at the time, my chief concern, was this: What other mistakes might happen?
I found it impossible to form the words to express all of the ideas swirling in my mind. I began to doubt everything the doctors said. Prior to this, I had been more than content, I had been eager to trust these brilliant minds. Yet at that moment, I wanted to banish all of them from the room. I wanted to throw things at the door behind them as they left. I was angry about...what? I was sick of feeling sick. I felt out-numbered, ignorant, and utterly helpless. I was alone in a room crowded with strangers, all staring at me. Nobody knew what to say, least of all me.
Someone commented that my platelets were so low, that it would've been more dangerous to not give platelets. "You needed platelets," he stated as a matter-of-fact. Maybe I did need the platelets, but did you know you were giving me Rh-negative platelets? Is something wrong with the process?! Shouldn't I have been informed before it happened? It was too much. I had no strength to argue, or to even, I think, articulate my concerns effectively. I was too weak, and too sleep-deprived. I submitted to the rhoGAM shot. The shot itself was no big deal--my issue was with the lack of information about the platelets. I'm not sure I got my point across. The doctors filtered out of my room--all except one.
The pharmacy specialist held back. He explained that NIH has a world-class blood bank, and even they run low on Rh-negative platelets. He went on to inform me that Rh-positive platelets are often given to Rh-negative patients, to no ill-effect. "Red cells are found in platelets, but in such low numbers that they most-often do no harm." I mentioned that I had already had two infusions, and they spoke of a third one... "Not to worry," he assured me.
I wanted to believe him. I needed more advice. He told me his name, and said he'd be happy to discuss any concerns or questions "any time". He was friendly, and confident. He seemed to believe what he was telling me, but I was not so sure.
As soon as he left, I texted my friend-doctor back at home. His comments confirmed what the pharmacy tech had said. It wasn't enough. I next contacted an online friend who trains nurses about all things Blood. She, like my other friend, assured me that I need not be overly concerned.
I was still terribly homesick. A friend texted, "How are you?" and I texted back something like, "Very rough day, please pray." A few minutes later, something happened that would change everything.
More fun, I developed an incredibly dark, purple-y bruise on my right upper arm. This hid just below the sleeve of my gown, and happened to be located on the arm most-chosen for blood-pressure measurements and neupogen shots. Nurses routinely gasped when they lifted the sleeve of the gown and found themselves staring at such a battered hunk of flesh.
Nurse duJour: Where'd that come from?
Me: Do you know < insert name of favorite nurse >?
N dJ: Yes...why?
Me: She hit me!
hahaha...
I still don't know how I got that bruise (and it remains on my arm to this day, though it is fading). Of course, no NIH nurse would ever punch a patient! They all went "above and beyond" in their care for me. As did the doctors. Despite what I'm about to tell you next.
Up until Day 8 post-cells, I would wake from my two or maybe three hours of nightly sleep with either a song in my head, or what seemed like someone happily shouting (why shouting, I don't know) a prayer from the rosary (most often this one: "Hail Holy Queen..."). On Day 8 though, I woke to utter silence. Something seemed "off". I felt incredibly lonely. It was Day 8 post-cells, but Day 19 in the hospital with no sign of when my bone-marrow might bounce back. Though the previous day's ANC (absolute neutrophil count) came in at a (not!) whopping "10", I was told not to get my hopes up; it could mean nothing.
It was 6:00 AM. I slogged out of bed, over to the chair that waited by the window. I faced toward the only sliver of sky that I could see from my room, up above the glass walkways that connected the upper floors of two wings of the building. As I prayed a rosary, I noticed my fellow walking through the glass-encased walkway towards the 3NW wing. I knew that in a matter of minutes he would stride into the room without knocking, as he did every morning. I would have plenty of time to finish the rosary before he arrived. I offered prayers for him, and for the rest of the staff, too.
He came in without greeting me, and sat on the edge of the bed. He leaned forward slightly, his hands folded in front of him, his expression serious. He looked past me, out the window.
him: I have something to tell you
me: m'kay
him: We have been giving you Rh-positive platelets.
me, horrified: WHAT?!? What are you trying to do kill me?
him: < silence ...then > ...we're discussing it. We are going to talk about it at rounds. I think it may only impact you if you are intending to have more children. We will talk about it at rounds. I will be back soon.
me, calmer: OK. < long pause > I woke up so homesick. <fighting tears> Do you have anything that can take homesickness away? (Of course, I knew that he didn't.)
him: < long pause > I wish I did. I will be back for rounds soon.
He left. Silent tears streamed down my face. I stared out the window, at the tiny sliver of sky that wasn't blocked by the brick walls of the building. I prayed that I would regain my composure as I faced what the flock of doctors would tell me.
My Rh-negative status was linked to some powerful, tragic memories which came flooding into my mind as I waited for the doctors' return.
What did it mean to be Rh-negative, and receive Rh-positive platelets? How could platelets be Rh-positive? I had no idea. Could it be the cause of the horrible rash?... A more horrifying thought: Would it impact my immune system? Would it affect the TIL treatment?
I was ignorant, and so terribly tired.
A few minutes later a flock of white-coated doctors entered my room. The attending physician took the floor, explaining what the fellow had just covered. He then referred to his peer, who he said, was more experienced with this question. That doctor encouraged me to get a rhoGAM shot.
I had questions. How would rhoGAM affect me, given the fact that I had no immune system to speak of? What were the ramifications if I did not get the rhoGAM? Was it too late already?--the first platelet infusion was five days earlier. With all of the pharmaceuticals coursing through my system already, would it be wise to add one more?... How dangerous is this situation, and did you know this happened before today? Why wasn't I informed ahead of time that this was a possibility...
What I could not verbalize at the time, my chief concern, was this: What other mistakes might happen?
I found it impossible to form the words to express all of the ideas swirling in my mind. I began to doubt everything the doctors said. Prior to this, I had been more than content, I had been eager to trust these brilliant minds. Yet at that moment, I wanted to banish all of them from the room. I wanted to throw things at the door behind them as they left. I was angry about...what? I was sick of feeling sick. I felt out-numbered, ignorant, and utterly helpless. I was alone in a room crowded with strangers, all staring at me. Nobody knew what to say, least of all me.
Someone commented that my platelets were so low, that it would've been more dangerous to not give platelets. "You needed platelets," he stated as a matter-of-fact. Maybe I did need the platelets, but did you know you were giving me Rh-negative platelets? Is something wrong with the process?! Shouldn't I have been informed before it happened? It was too much. I had no strength to argue, or to even, I think, articulate my concerns effectively. I was too weak, and too sleep-deprived. I submitted to the rhoGAM shot. The shot itself was no big deal--my issue was with the lack of information about the platelets. I'm not sure I got my point across. The doctors filtered out of my room--all except one.
The pharmacy specialist held back. He explained that NIH has a world-class blood bank, and even they run low on Rh-negative platelets. He went on to inform me that Rh-positive platelets are often given to Rh-negative patients, to no ill-effect. "Red cells are found in platelets, but in such low numbers that they most-often do no harm." I mentioned that I had already had two infusions, and they spoke of a third one... "Not to worry," he assured me.
I wanted to believe him. I needed more advice. He told me his name, and said he'd be happy to discuss any concerns or questions "any time". He was friendly, and confident. He seemed to believe what he was telling me, but I was not so sure.
As soon as he left, I texted my friend-doctor back at home. His comments confirmed what the pharmacy tech had said. It wasn't enough. I next contacted an online friend who trains nurses about all things Blood. She, like my other friend, assured me that I need not be overly concerned.
I was still terribly homesick. A friend texted, "How are you?" and I texted back something like, "Very rough day, please pray." A few minutes later, something happened that would change everything.
Subscribe to:
Posts (Atom)