It's Saturday, and I'm not feeling that bad anymore. My stomach has settled a great deal, and the pain for my line has dropped at least in half (to a level 3 now).
So why was last night so hard for me?
I'm not sure why I couldn't just let the promises for this process sustain me without having a mini-meltdown, but I feel much better this morning.
Time for another dose of Fludarabine and Cytoxan, so off to LDS Hospital Dale and I go.
We're a bit late (10 minutes), but they're still not prepared for me, especially when I demand that we change anti-nausea drugs. (What about the dexamethasone I was promised?) And we neglected to give extra fluids (saline) with the Cytoxan that was mentioned on Wednesday. Can we fix both of those things?
Sure, but it takes a while to track down the new orders.
Finally, the dexamethasone is on board, the two chemo drugs finish, and we clear the building around noon.
For the next three days, I'll just get the Fludarabine, which isn't as potent, so I should be good to go.
And no nausea or vomiting yet. And very little pain, especially compared to last night.
Hip, hip, hooray!
Purple Everywhere
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Showing posts with label chemo side effects. Show all posts
Showing posts with label chemo side effects. Show all posts
Saturday, February 8, 2014
Friday, February 7, 2014
Maybe Too Much Optimism
So sometimes I forget how hard things are when you're fighting cancer.
I know that outcome, so I just want to focus on that and stay upbeat and positive. Everything will work out okay, so why dwell on anything else?
Well, sometimes the pains of this life intervene in my plans.
I'm sitting here, absolutely sick to my stomach. The thought of any food makes me immediately ill. And I'm throwing up violently. I feel like I did when I was seven, when all I could do after each treatment is throw up violently for about 18 hours. Yuck! Darn Fludarabine and Cytoxan.
They gave me an anti-nausea medication by IV, but I warned them that ondasetron (Zofran) doesn't do it by itself. They wanted to prove that it wasn't enough though. Drat!
And the three places where they had to cut me to place my central line are pretty painful, especially the middle one. It feels like I'm constantly being cut by a sharp knife and that knife isn't being pulled out. In fact, it's staying in and being twisted every once in while.
So I'm in pain (maybe at a level 6 for me). It's ratcheting up the pain scale as the night continues onward. But I'm nauseous and vomiting, so I don't dare take anything for the pain.
I'm not looking forward to sleeping tonight. In fact, I feel like crying and having a little pity party for myself. Darn it!
Why do things have to get so hard? They'll be better in the morning. I know that, so why isn't that enough to pull me out of my funk tonight? Why can't I continue focusing on the outcome of all this? I will be healed!
I know that outcome, so I just want to focus on that and stay upbeat and positive. Everything will work out okay, so why dwell on anything else?
Well, sometimes the pains of this life intervene in my plans.
I'm sitting here, absolutely sick to my stomach. The thought of any food makes me immediately ill. And I'm throwing up violently. I feel like I did when I was seven, when all I could do after each treatment is throw up violently for about 18 hours. Yuck! Darn Fludarabine and Cytoxan.
They gave me an anti-nausea medication by IV, but I warned them that ondasetron (Zofran) doesn't do it by itself. They wanted to prove that it wasn't enough though. Drat!
And the three places where they had to cut me to place my central line are pretty painful, especially the middle one. It feels like I'm constantly being cut by a sharp knife and that knife isn't being pulled out. In fact, it's staying in and being twisted every once in while.
So I'm in pain (maybe at a level 6 for me). It's ratcheting up the pain scale as the night continues onward. But I'm nauseous and vomiting, so I don't dare take anything for the pain.
I'm not looking forward to sleeping tonight. In fact, I feel like crying and having a little pity party for myself. Darn it!
Why do things have to get so hard? They'll be better in the morning. I know that, so why isn't that enough to pull me out of my funk tonight? Why can't I continue focusing on the outcome of all this? I will be healed!
Wednesday, June 19, 2013
TAVR
After a heart catheterization by Dr. Tandar (to see how big the vessels are and the structures of the heart), it's determined that I'm not a good candidate for open heart surgery, nor for the TAVR through the right groin.
Of course not! Why would I want to be easy or normal.
I get the TAVR through the ribs, which is the most painful way to replace an aortic valve. It's the least desirable option because the U has done only 12 of them, I'm their 13th patient and because the ribs are wrapped with nerves and they have to irritate those nerves a lot by separating or spreading the ribs and inserting instruments in and out of them.
Lucky me!
I'm scared to death. They're going to go into my heart, push a foreign body (a manufactured valve) into it, and hope it keeps working? It's my heart. It's essential. There are lots of risks associated with this procedure. And even though this technique has been used in Europe for 5-6 years, it was just approved in the US in 2011.
Yikes!
Almost too late, I do receive some calm assurances that this surgery won't kill me. (That would be too easy.) And that it will go well. Finally, two days before the surgery on June 19, I can sleep again. Whew!
The surgery actually goes well. I refuse the Versed, so I'm awake and alert as they start the arterial IV line (so they can monitor everything) and get to ask some questions as they get set up. Eventually, I'm holding my own oxygen mask because it won't stay on and talking to the various personnel in the operating room.
I can tell the anesthesiologist is having trouble placing the arterial line, but what did he expect from someone who's had five different chemo regimens so far? All of that poison running around my blood vessels has got to do a lot fo damage. About 20 minutes after arriving in the room, he must have gotten it because, without any warning, I start feeling heavy and dizzy and doze off.
It can't be too much later though, that I realize I'm awake again, but I can't move anything: eyes, fingers, mouth--nothing.
But I'm hearing all of the conversations in the room, and most seem to be centered on my chest and how they're going to move my left breast and keep it away from the surgery site. My chest is mentioned at least 5-6 times, and I'm laughing to myself and almost feel guilty that I'm listening in on their dilemma without them being aware of it.
Finally, someone offers to run and try to find some heavy-duty tape. And at that point, I'm asleep again.
When I wake up, Dale's in the room and a nurse, but I'm greatly annoyed because my wrists are tied down somehow. I'm also still intubated and have that tube down my throat, but I was warned about that, so I'm not surprised or too annoyed at that.
When I'm finally conscious enough, they remove the restraints; and I ask for paper and a pen so I can at least communicate by writing. (Dale says my first notes were just scribbles, but I'm convinced they were really important.)
Not too much later the intubation tube comes out, and I can really assess the damage.
I have the following things attached to me:
1. Intubation tube
2. Pacing wire in my right groin
3. Arterial IV line
4. Swann's catheter
5. MAC line (central line in my neck)
6. 1 chest tube
7. Jackson Pratt drain
8. Triple lumen catheter in my left neck
9. Port accessed
10. BP cuff
11. O2 monitor
12. EKG leads
13. Squeezy things on both legs to prevent blood clots
Whew! No wonder I feel a little beat up. Actually though, considering, I feel pretty good, and I'm moved to a regular room within a few hours.
Dale says that they told him to expect up to a 4 hour surgery, but I was in there only about 90 minutes. They told him they'd give him updates every 30 minutes; but they didn't have time to call him and give him the third update before the doctors were in front of him, telling him it was over and went very well.
Hooray! Survived that obstacle.
Of course not! Why would I want to be easy or normal.
I get the TAVR through the ribs, which is the most painful way to replace an aortic valve. It's the least desirable option because the U has done only 12 of them, I'm their 13th patient and because the ribs are wrapped with nerves and they have to irritate those nerves a lot by separating or spreading the ribs and inserting instruments in and out of them.
Lucky me!
I'm scared to death. They're going to go into my heart, push a foreign body (a manufactured valve) into it, and hope it keeps working? It's my heart. It's essential. There are lots of risks associated with this procedure. And even though this technique has been used in Europe for 5-6 years, it was just approved in the US in 2011.
Yikes!
Almost too late, I do receive some calm assurances that this surgery won't kill me. (That would be too easy.) And that it will go well. Finally, two days before the surgery on June 19, I can sleep again. Whew!
The surgery actually goes well. I refuse the Versed, so I'm awake and alert as they start the arterial IV line (so they can monitor everything) and get to ask some questions as they get set up. Eventually, I'm holding my own oxygen mask because it won't stay on and talking to the various personnel in the operating room.
I can tell the anesthesiologist is having trouble placing the arterial line, but what did he expect from someone who's had five different chemo regimens so far? All of that poison running around my blood vessels has got to do a lot fo damage. About 20 minutes after arriving in the room, he must have gotten it because, without any warning, I start feeling heavy and dizzy and doze off.
It can't be too much later though, that I realize I'm awake again, but I can't move anything: eyes, fingers, mouth--nothing.
But I'm hearing all of the conversations in the room, and most seem to be centered on my chest and how they're going to move my left breast and keep it away from the surgery site. My chest is mentioned at least 5-6 times, and I'm laughing to myself and almost feel guilty that I'm listening in on their dilemma without them being aware of it.
Finally, someone offers to run and try to find some heavy-duty tape. And at that point, I'm asleep again.
When I wake up, Dale's in the room and a nurse, but I'm greatly annoyed because my wrists are tied down somehow. I'm also still intubated and have that tube down my throat, but I was warned about that, so I'm not surprised or too annoyed at that.
When I'm finally conscious enough, they remove the restraints; and I ask for paper and a pen so I can at least communicate by writing. (Dale says my first notes were just scribbles, but I'm convinced they were really important.)
Not too much later the intubation tube comes out, and I can really assess the damage.
I have the following things attached to me:
1. Intubation tube
2. Pacing wire in my right groin
3. Arterial IV line
4. Swann's catheter
5. MAC line (central line in my neck)
6. 1 chest tube
7. Jackson Pratt drain
8. Triple lumen catheter in my left neck
9. Port accessed
10. BP cuff
11. O2 monitor
12. EKG leads
13. Squeezy things on both legs to prevent blood clots
Whew! No wonder I feel a little beat up. Actually though, considering, I feel pretty good, and I'm moved to a regular room within a few hours.
Dale says that they told him to expect up to a 4 hour surgery, but I was in there only about 90 minutes. They told him they'd give him updates every 30 minutes; but they didn't have time to call him and give him the third update before the doctors were in front of him, telling him it was over and went very well.
Hooray! Survived that obstacle.
Tuesday, June 11, 2013
Perfect Storm - Finale
I call St. Mark's medical records department in the morning, to warn them that I'm going to need copies (pictures) of the caratid ultrasound, CT scans, and PFTs that I've had done. I'm told that they can't do anything until I'm there in person because I have to sign a release form. Anticipating this need, I've already signed a full release of all medical records from St. Mark's to UofU and back. However, that's not good enough for St. Mark's, or at least the woman in medical records that I spoke with. Even though it will be several CDs worth, nothing can be done or started until I'm there in person.
Okay, fine. We'll deal with that later and head off to UofU for a transesaphageal echocardiogram (TEE).
After some squawking from the TEE technician (maybe I'm getting too keyed up around all these medical personnel, and am too familiar with what's going to happen next), I finally convince him that I'm not going to Versed and goes off to get the radiologist to perform the test.
In the end, I do agree to some Versed to help control my gag reflex, but not enough to knock me out.
Then, I have about two hours before my next procedure is scheduled at UofU, so I head to St. Mark's to see if I can get the CDs with all of my test results on it.
Over the phone this morning, I asked where medical records is located but was told I'd be directed there after I arrived at the hospital. I inquire at the front Information desk and am directed past the coffee area in the cafeteria, down a long hallway, to the last door on my right.
Hooray! I'm finally in medical records and we can get some action going. I have a good idea of how much information I'm asking for. In fact, I ask the girl at the desk if she can call down and have them start copying files while I fill out the release of information form.
"How long will it take to copy everything?"
"It will be about 15 minutes, if you'll just have a seat."
Great. I have about 90 minutes before my next appointment at UofU; that will give us a lot of time to get the records and drive back to the U.
The girl answers her phone, listens, and then announces to me, "You have a lot of records to copy, so it will probably take 20 minutes and not 15 to copy them."
No problem. That still leaves plenty of time.
So Dale and I wait, and wait. Another gentlemen comes and asks for some records. About 10 minutes later, someone comes to the room with his records in an envelope and he gets to leave. And we wait some more.
"Any idea how much longer on my records?"
Another call and "About 15 minutes more."
After about 30 more minutes, I inquire at the desk, "Can you call and see how much longer it's going to be?"
"Sure." There's a call, and the response, "She says it should be about 15 minutes."
"Really? Because 30 minutes ago, we were given that same answer. We still need 15 more minutes? So no progress has been made in the past 15 minutes?"
"You requested a lot of records, ma'am. I'm sure she's doing her best."
"Okay. Well could we wait closer to wherever the magical records are being copied? That way, we don't have to wait for her to walk them over or up or down or wherever she is and we can leave sooner. Now I'm getting worried about my other appointment at the U that's supposed to be in 30 minutes."
"No, I can't send you over where she is; and I can't tell you where she is. She's busy copying your files and will be here when they're ready." However, she lets slip that the magical file room is near Radiology.
"Fine. I'm going over by Radiology to wait there."
When I get to Radiology, I notice the same receptionist sitting at the front desk that was there when I had the carotid artery ultrasound and CT and then got my port flushed and PFTs the next day. Hopefully, she'll recognize me and be able to help speed this process along.
"Hi, I'm having some records copied to disks. Can you call the lady that's copying them and see how much longer it will be?"
Another call and "She's going as fast as she can and has no way to judge how much longer it will take."
That's an honest answer at least. "Does she know how far along she is? Like 50% or 75%?"
"Just a moment," a pause in the telephone conversation and then, "She's about 65% finished."
"I'm going to be late for an appointment at the U that she knew about. I've been waiting for about 75 minutes now and she thinks she's 65% finished? What can we do to speed this along?"
"I'm sorry. You're just going to have to wait."
By this time, I've got 5 minutes until my appointment at the U, so I call Sally to let her know the fiasco I'm experiencing. No big deal, Sally assures me, but can I be there in the next 30 minutes.
30 minutes still gives me a little wiggle room. Maybe those files will magically speed up and be finished in the next 10 minutes so I can take them with me. I sit down to wait again.
About 8 minutes go by when. . .I'm not kidding. . .all the lights in the entire Radiology department go off. There's no power, at least in that part of the hospital.
I'm immediately on my feet and back at the Radiology reception desk.
"Hi. Can you call the records department and ask them if this power outtage affects my records being copied?"
"Sure." Then, "Yes, the power outtage stopped the records halfway, so she's going to need to start over."
Forget it. If the other signs weren't obvious enough (switching doctors on me without notice, registration problems galore, not flushing my port, not being able to correctly measure my height, and not allowing me access to my own records in a timely manner), and now the power completely shuts down?
Not only will I not be using St. Mark's services or allow them to touch me again for any medical procedure--yet alone the valve transplant, I now vow that I will never step foot inside their hospital ever again.
Message finally received. It's as if the hand of God reached down and personally said, "Thou shalt not go here."
********************After note***************
I did get a personal phone call from Steve Bateman, CEO of St. Mark's Hospital. When he heard all of the hassle I had to endure and then the last straw of the power going out, he's the one who said "I'm not trying to be insensitive, but it's almost humorous. It's like the perfect storm went off just on you."
Yep. Even though I have his personal cell phone number and an offer to meet me personally at the door the next time I'm at the hospital, I will never step foot inside your hospital again.
Good-bye St. Mark's. Hello U of U.
Okay, fine. We'll deal with that later and head off to UofU for a transesaphageal echocardiogram (TEE).
After some squawking from the TEE technician (maybe I'm getting too keyed up around all these medical personnel, and am too familiar with what's going to happen next), I finally convince him that I'm not going to Versed and goes off to get the radiologist to perform the test.
In the end, I do agree to some Versed to help control my gag reflex, but not enough to knock me out.
Then, I have about two hours before my next procedure is scheduled at UofU, so I head to St. Mark's to see if I can get the CDs with all of my test results on it.
Over the phone this morning, I asked where medical records is located but was told I'd be directed there after I arrived at the hospital. I inquire at the front Information desk and am directed past the coffee area in the cafeteria, down a long hallway, to the last door on my right.
Hooray! I'm finally in medical records and we can get some action going. I have a good idea of how much information I'm asking for. In fact, I ask the girl at the desk if she can call down and have them start copying files while I fill out the release of information form.
"How long will it take to copy everything?"
"It will be about 15 minutes, if you'll just have a seat."
Great. I have about 90 minutes before my next appointment at UofU; that will give us a lot of time to get the records and drive back to the U.
The girl answers her phone, listens, and then announces to me, "You have a lot of records to copy, so it will probably take 20 minutes and not 15 to copy them."
No problem. That still leaves plenty of time.
So Dale and I wait, and wait. Another gentlemen comes and asks for some records. About 10 minutes later, someone comes to the room with his records in an envelope and he gets to leave. And we wait some more.
"Any idea how much longer on my records?"
Another call and "About 15 minutes more."
After about 30 more minutes, I inquire at the desk, "Can you call and see how much longer it's going to be?"
"Sure." There's a call, and the response, "She says it should be about 15 minutes."
"Really? Because 30 minutes ago, we were given that same answer. We still need 15 more minutes? So no progress has been made in the past 15 minutes?"
"You requested a lot of records, ma'am. I'm sure she's doing her best."
"Okay. Well could we wait closer to wherever the magical records are being copied? That way, we don't have to wait for her to walk them over or up or down or wherever she is and we can leave sooner. Now I'm getting worried about my other appointment at the U that's supposed to be in 30 minutes."
"No, I can't send you over where she is; and I can't tell you where she is. She's busy copying your files and will be here when they're ready." However, she lets slip that the magical file room is near Radiology.
"Fine. I'm going over by Radiology to wait there."
When I get to Radiology, I notice the same receptionist sitting at the front desk that was there when I had the carotid artery ultrasound and CT and then got my port flushed and PFTs the next day. Hopefully, she'll recognize me and be able to help speed this process along.
"Hi, I'm having some records copied to disks. Can you call the lady that's copying them and see how much longer it will be?"
Another call and "She's going as fast as she can and has no way to judge how much longer it will take."
That's an honest answer at least. "Does she know how far along she is? Like 50% or 75%?"
"Just a moment," a pause in the telephone conversation and then, "She's about 65% finished."
"I'm going to be late for an appointment at the U that she knew about. I've been waiting for about 75 minutes now and she thinks she's 65% finished? What can we do to speed this along?"
"I'm sorry. You're just going to have to wait."
By this time, I've got 5 minutes until my appointment at the U, so I call Sally to let her know the fiasco I'm experiencing. No big deal, Sally assures me, but can I be there in the next 30 minutes.
30 minutes still gives me a little wiggle room. Maybe those files will magically speed up and be finished in the next 10 minutes so I can take them with me. I sit down to wait again.
About 8 minutes go by when. . .I'm not kidding. . .all the lights in the entire Radiology department go off. There's no power, at least in that part of the hospital.
I'm immediately on my feet and back at the Radiology reception desk.
"Hi. Can you call the records department and ask them if this power outtage affects my records being copied?"
"Sure." Then, "Yes, the power outtage stopped the records halfway, so she's going to need to start over."
Forget it. If the other signs weren't obvious enough (switching doctors on me without notice, registration problems galore, not flushing my port, not being able to correctly measure my height, and not allowing me access to my own records in a timely manner), and now the power completely shuts down?
Not only will I not be using St. Mark's services or allow them to touch me again for any medical procedure--yet alone the valve transplant, I now vow that I will never step foot inside their hospital ever again.
Message finally received. It's as if the hand of God reached down and personally said, "Thou shalt not go here."
********************After note***************
I did get a personal phone call from Steve Bateman, CEO of St. Mark's Hospital. When he heard all of the hassle I had to endure and then the last straw of the power going out, he's the one who said "I'm not trying to be insensitive, but it's almost humorous. It's like the perfect storm went off just on you."
Yep. Even though I have his personal cell phone number and an offer to meet me personally at the door the next time I'm at the hospital, I will never step foot inside your hospital again.
Good-bye St. Mark's. Hello U of U.
Monday, June 3, 2013
New Front Door
I got home from talking to Drs. Tandar and Patel about the possibility of open heart surgery to replace my aortic valve, which was VERY stressful, to a new front door.
I'm talking to Tangela on the phone as we pull into our cul-de-sac.
When we're almost in the driveway, I notice that our front door isn't white anymore. Instead, it's a beautiful shade of purple. Momentarily forgetting that I'm still on the phone, I start yelling, "Oh my! Our door is purple. It's beautiful."
Tangi, listening, says, "It is? Really?"
I don't know what I hear in her voice, because I'm immediately aware that she doesn't sound nearly as surprised as I am.
"You don't sound surprised, Tangi."
"Really?"
Suddenly, there's a loud noise at the passenger door of our car, where I'm sitting. It scares me so much that I jump (and scream again). Poor Tangi is really getting an earful during our conversation.
It's my sister, Tiffany. My sisters are sneaky and quick. While I was at the doctor's, they painted our front door.
Thanks, Tangi and Tippy :-)
And the door is beautiful! The paint color is named Bella. How appropriate and just in time for the Purple War fun run on Thursday and bake and craft sale on Saturday!
I'm talking to Tangela on the phone as we pull into our cul-de-sac.
When we're almost in the driveway, I notice that our front door isn't white anymore. Instead, it's a beautiful shade of purple. Momentarily forgetting that I'm still on the phone, I start yelling, "Oh my! Our door is purple. It's beautiful."
Tangi, listening, says, "It is? Really?"
I don't know what I hear in her voice, because I'm immediately aware that she doesn't sound nearly as surprised as I am.
"You don't sound surprised, Tangi."
"Really?"
Suddenly, there's a loud noise at the passenger door of our car, where I'm sitting. It scares me so much that I jump (and scream again). Poor Tangi is really getting an earful during our conversation.
It's my sister, Tiffany. My sisters are sneaky and quick. While I was at the doctor's, they painted our front door.
Thanks, Tangi and Tippy :-)
And the door is beautiful! The paint color is named Bella. How appropriate and just in time for the Purple War fun run on Thursday and bake and craft sale on Saturday!
Initial Heart Appointments
It's off to the UofU hospital to talk to Dr. Tandar about an aortic valve transplant. I'm not that excited that we even have to discuss the subject, but here we go.
Monday
We meet with Dr. Tandar and Dr. Amit Patel. They're pushing for a trans-apical approach either through the right groin or through my ribs on the left side because it's less recovery time than open heart surgery. Also, as they put it, these other techniques were developed for high-risk patients that might not make it off the table from open-heart surgery. Oh joy! They think that's me--high-risk, might not survive open-heart surgery. And, because I just got radiation to the right groin area, they're thinking that they probably have to go through my ribs (less desirable, more painful, and more recovery time than through the groin).
It's funny, but I think the very best part of meeting Drs. Tandar and Patel are their assistant, Sally. She's awesome. She's their transplant coordinator and is available by email or cell phone to answer any of my questions. "You're my Rachael," I say delightedly.
She probably thinks I've misheard her name and says, "No, it's Sally."
When I explain to her that Rachael Beers is my bone marrow transplant and how efficient and effective she is, and how much I love working with her, Sally is a little relieved, but I don't think she still likes my comparison.
A bunch of tests have to be done before the doctors are willing to say which procedure they'd do (through the ribs or through the groin), so we talk about scheduling those. We tell them that we're seeking a second opinion at St. Mark's Hospital, so maybe half the tests should be scheduled at St. Mark's and half at the UofU.
Wherever we feel the most comfortable is where we'll have the procedure done.
Wednesday
We're supposed to meet with Dr. Kawande at St. Mark's Hospital. However, when we get there (and not before), we're told that Dr. Kawande can't meet with us unless we want to wait three weeks, so they scheduled us with Dr. Schorlemmer instead. But first, we need to meet with another cardiac doctor first. That first doctor was an absolute waste of our time. He basically told us, "You have a lot to think about and a lot of information to sort through so that you can make a decision on which way will work better for you. I don't know what to tell you and don't have any recommendations for you."
Monday
We meet with Dr. Tandar and Dr. Amit Patel. They're pushing for a trans-apical approach either through the right groin or through my ribs on the left side because it's less recovery time than open heart surgery. Also, as they put it, these other techniques were developed for high-risk patients that might not make it off the table from open-heart surgery. Oh joy! They think that's me--high-risk, might not survive open-heart surgery. And, because I just got radiation to the right groin area, they're thinking that they probably have to go through my ribs (less desirable, more painful, and more recovery time than through the groin).
It's funny, but I think the very best part of meeting Drs. Tandar and Patel are their assistant, Sally. She's awesome. She's their transplant coordinator and is available by email or cell phone to answer any of my questions. "You're my Rachael," I say delightedly.
She probably thinks I've misheard her name and says, "No, it's Sally."
When I explain to her that Rachael Beers is my bone marrow transplant and how efficient and effective she is, and how much I love working with her, Sally is a little relieved, but I don't think she still likes my comparison.
A bunch of tests have to be done before the doctors are willing to say which procedure they'd do (through the ribs or through the groin), so we talk about scheduling those. We tell them that we're seeking a second opinion at St. Mark's Hospital, so maybe half the tests should be scheduled at St. Mark's and half at the UofU.
Wherever we feel the most comfortable is where we'll have the procedure done.
Wednesday
We're supposed to meet with Dr. Kawande at St. Mark's Hospital. However, when we get there (and not before), we're told that Dr. Kawande can't meet with us unless we want to wait three weeks, so they scheduled us with Dr. Schorlemmer instead. But first, we need to meet with another cardiac doctor first. That first doctor was an absolute waste of our time. He basically told us, "You have a lot to think about and a lot of information to sort through so that you can make a decision on which way will work better for you. I don't know what to tell you and don't have any recommendations for you."
Well, if that's what he, as an expert on the subject, thinks, how are Dale and I
supposed to figure it out? Not helpful!
Dr. Schorlemmer was much more helpful
and said, "Why don't we proceed with these five tests, which you'll have
to have prior to surgery anyway. The data from those tests will tell us what is
and isn't possible, rather than us trying to guess, based on your
history."
Hooray! A plan and someone that makes sense. So I stuck around
and Dad left me at the hospital so that he and Travis could go ATVing together.
I'll have more appointments on Thursday also. But the appointments at St. Mark's are all setting up for the perfect storm. For more details, see the post with that title!
Wednesday, April 3, 2013
Broken Ankle Follow Up
Dr. Garrett asked me to return for follow up x-rays on my left ankle about two weeks out, and it's been two and a half weeks, so I head back to Urgent Care in Lindon.
Dr. Garrett is out on Spring Break, but a nurse practitioner is available to see me, so I head back to x-ray to get follow up images.
I never asked what part of my ankle I broke, so I ask the technician if I can see my earlier x-rays to see what I broke. She needs to know what x-rays to do, so she pulls them up and the formal report from the radiologist who read the x-rays after I left Dr. Garrett a few weeks ago.
She pulls up the x-rays and shows me where an earlier break of my malleolus occurred. (The malleolus is the rounded bony prominence on the outside of each ankle.) She can tell it was an earlier break because the edges are all rounded and smooth--evidence of a healed broken bone. And she points out the sharp jagged lines of what Dr. Garrett assumed was where I broke it this time. It's a smaller break, about a quarter of the size and behind the earlier break.
She pulls up the radiologist's report and we read together that he notes the earlier break but doesn't see evidence of any other breaks.
Wait a minute? I've been clunking around in that stupid boot when I didn't need to? Forget that! I'm ready to be done with the walking boot. Hooray!
The technician doesn't want to subject me to more radiation for a non-break, so back to the waiting room I go to wait for the nurse practitioner. She's fast and a few minutes later we're discussing my foot. She's looked at the old x-rays and the radiologist's report and is absolutely convinced I have broken my ankle and doesn't really know how to explain the report--except that radiologist's in her opinion can't be trusted.
She proceeds to tell me about a violent pain she had in her stomach for a while ago, insisted upon CT scans, and read the radiologist's report that all was normal. She insisted on seeing the pictures herself and noted lots of fluid accumulation right where she was feeling the pain. Turns out she needed surgery but felt immediately better after the surgery.
I recounted my own recent experience of having a CT scan to track the progress of chemo in shrinking the tumor in my right inguinal lymph node and not having the radiologist even mention the lump in his report. Then having to have them go back into the scans, measure the area, and add an addendum to the original report with the new measurements.
I can understand how they might miss a small break if they miss measuring a tumor that we've been tracking for several months now and were asked to compare the size to previous scans that were done at the same place (Central Utah Clinic in American Fork).
So back to x-ray we go to compare old films to new films to see if it's healing. The malleolus is supposed to be one bone. It looks like the new break is healing but it's not healing or attaching itself to the malleolus; instead, it's a separate little disk of bone that's just out there by itself.
She asks if it's causing pain. (No, because I can't feel my feet due to the neuropathy.) And then suggests that I come back in another two and half weeks to ensure that it continues to heal. If it was causing me pain or making it more difficult to walk, she recommend surgery. However, it's hard to tell if it needs surgical intervention because walking is difficult anyway, and I can't feel my feet.
The comedy of errors that is my life--it isn't broken, but wait it really is--continues!
Dr. Garrett is out on Spring Break, but a nurse practitioner is available to see me, so I head back to x-ray to get follow up images.
I never asked what part of my ankle I broke, so I ask the technician if I can see my earlier x-rays to see what I broke. She needs to know what x-rays to do, so she pulls them up and the formal report from the radiologist who read the x-rays after I left Dr. Garrett a few weeks ago.
She pulls up the x-rays and shows me where an earlier break of my malleolus occurred. (The malleolus is the rounded bony prominence on the outside of each ankle.) She can tell it was an earlier break because the edges are all rounded and smooth--evidence of a healed broken bone. And she points out the sharp jagged lines of what Dr. Garrett assumed was where I broke it this time. It's a smaller break, about a quarter of the size and behind the earlier break.
She pulls up the radiologist's report and we read together that he notes the earlier break but doesn't see evidence of any other breaks.
Wait a minute? I've been clunking around in that stupid boot when I didn't need to? Forget that! I'm ready to be done with the walking boot. Hooray!
The technician doesn't want to subject me to more radiation for a non-break, so back to the waiting room I go to wait for the nurse practitioner. She's fast and a few minutes later we're discussing my foot. She's looked at the old x-rays and the radiologist's report and is absolutely convinced I have broken my ankle and doesn't really know how to explain the report--except that radiologist's in her opinion can't be trusted.
She proceeds to tell me about a violent pain she had in her stomach for a while ago, insisted upon CT scans, and read the radiologist's report that all was normal. She insisted on seeing the pictures herself and noted lots of fluid accumulation right where she was feeling the pain. Turns out she needed surgery but felt immediately better after the surgery.
I recounted my own recent experience of having a CT scan to track the progress of chemo in shrinking the tumor in my right inguinal lymph node and not having the radiologist even mention the lump in his report. Then having to have them go back into the scans, measure the area, and add an addendum to the original report with the new measurements.
I can understand how they might miss a small break if they miss measuring a tumor that we've been tracking for several months now and were asked to compare the size to previous scans that were done at the same place (Central Utah Clinic in American Fork).
So back to x-ray we go to compare old films to new films to see if it's healing. The malleolus is supposed to be one bone. It looks like the new break is healing but it's not healing or attaching itself to the malleolus; instead, it's a separate little disk of bone that's just out there by itself.
She asks if it's causing pain. (No, because I can't feel my feet due to the neuropathy.) And then suggests that I come back in another two and half weeks to ensure that it continues to heal. If it was causing me pain or making it more difficult to walk, she recommend surgery. However, it's hard to tell if it needs surgical intervention because walking is difficult anyway, and I can't feel my feet.
The comedy of errors that is my life--it isn't broken, but wait it really is--continues!
Monday, March 18, 2013
Another Hiccup
So maybe I don't make the best choices sometimes.
It's Sunday, St. Patrick's Day, and I want to wear a pair of green wedge platforms for the holiday. I took trial run with them Saturday night to the adult session of Stake Conference. They're not heels where I'm forced to try and balance on the soles of my feet only and they're only about a 2.5" platform, so I figure it's safe to proceed
We have about ten minutes before we have to leave Sunday morning. Everyone's ready or finishing their preparations, so I head back to the closet to grab my green platforms. Before I make it out of our bathroom, I've managed to roll my left ankle pretty severely and even cry out from the pain and the suddenness of being so off balance; but I'm determined to proceed.
I make it out to our living room where Dale, Miriam, Travis, my sister Tressie, her two daughters Karli and Kayla, and some other girls are waiting for us to leave. Before I've moved two steps from the edge of our couch, I roll my ankle twice more, with Dale having to reach out and catch me the last time.
Without missing a beat, he asks "What flats should I go get you?" and he kicks that pretty green platform right off my left foot.
Darn! I guess you shouldn't try to wear platform shoes when you can't feel your feet. If you can't walk or balance in regular shoes, any type of heel probably isn't the best decision.
We make it to Stake Conference and are ushered to the front so that Dale, Tressie, and I can sit together at the end of a row (while Miriam, Travis, and the rest of the girls get to sit in the back). Travis is carrying my bag, so it goes back with them without me realizing that I don't have it.
Almost as soon as I sit down, my foot starts throbbing. It's not so painful, but I can feel every heartbeat vibrating through it and there is a little pain associated with each beat.
"Dale, I think I need to go out and prop my foot up," I whisper to him. So a few minutes later, I'm hobbling on one good foot and dragging a large oxygen tank and its cart out the chapel doors to the nearest couch.
Tressie comes out a few seconds later and offers to drag a folding chair over as a place to prop up my foot and that's how we spend Stake Conference.
On Monday, my foot is a little swollen and a little bruised and I wonder how much damage I really did to it. Because I can't really feel it, is it possible I broke it and don't know?
Knowing my propensity for having multiple issues with my body, I head off to Urgent Care in Lindon.
"I need to have my left ankle x-rayed to ensure that I didn't break it," I inform the front desk staff and the attending nurse. I'm assured that I'm the next patient and that the doctor will be with me shortly.
After what seems like an hour and after I've had a chance to devour an entire magazine, I hobble out to find my sheet on the door and look at the time I was checked in. 11:08 a.m. It's now 12:06 p.m., so it has been an hour. I'm kind of surprised that my internal clock is so accurate.
When I ask the nurses how much longer, they agree it's been too long and they'll take me back for x-rays before the doctor sees me so he can look at them when he's finally finished with the other patient.
About ten minutes later, after x-rays, Dr. Garrett Smith comes in and says, "Yeah, well you did a good job. I'm pretty sure your ankle is broken. You'll need to be on crutches for at least two weeks."
Knowing what my body has been through and that chemo zaps calcium from bones, I automatically translate, "Okay for me, that means at least four weeks and probably more like six." Then I say, "Yeah, well as soon as you help me figure out how to hobble on crutches while dragging oxygen around, I'm all over your plan." Crutches are just not going to work.
During our conversation, I tell him that I can't really feel my feet due to the grade 3 or 4 peripheral neuropathy. Yet twice during our time together, he says "Just let pain be your guide. If it's hurts, don't walk on it" and "I can prescribe something for pain."
Pain? What pain? If I think about it hard, there might be some aching bone pain that might register about a 3 on the 1-10 usual pain scale. I'm certainly not taking anything (not even Ibuprofen) for a 3. And if I can walk on it as long as it doesn't hurt, I'm good to go now.
Nope, not without having to discuss whether we should cast it or put a walking boot on my left foot.
"What's the easiest to walk on?" I ask. Definitely the walking boot, so I'm fitted with a large, clunky, heavy black boot before managing to leave the office.
My life is a comedy of errors at this point. Hobbling around in a heavy walking boot and dragging oxygen is quite the balancing act, without bringing the numbness from the neuropathy into the equation. What else can I do at this point but just laugh? And laugh I do!
When one of my visiting teachers hears that I've broken my ankle, her first impression is to bring her family home from Disneyland so she can help me. Are you kidding? It's a great thought, but my ankle is just another silly part of my life right now. It's not like I need surgery or it's bad enough that I can't be mobile. It's just a laughable addition to my life at this point. The thought is comforting and amazing but definitely not needed!
It's Sunday, St. Patrick's Day, and I want to wear a pair of green wedge platforms for the holiday. I took trial run with them Saturday night to the adult session of Stake Conference. They're not heels where I'm forced to try and balance on the soles of my feet only and they're only about a 2.5" platform, so I figure it's safe to proceed
We have about ten minutes before we have to leave Sunday morning. Everyone's ready or finishing their preparations, so I head back to the closet to grab my green platforms. Before I make it out of our bathroom, I've managed to roll my left ankle pretty severely and even cry out from the pain and the suddenness of being so off balance; but I'm determined to proceed.
I make it out to our living room where Dale, Miriam, Travis, my sister Tressie, her two daughters Karli and Kayla, and some other girls are waiting for us to leave. Before I've moved two steps from the edge of our couch, I roll my ankle twice more, with Dale having to reach out and catch me the last time.
Without missing a beat, he asks "What flats should I go get you?" and he kicks that pretty green platform right off my left foot.
Darn! I guess you shouldn't try to wear platform shoes when you can't feel your feet. If you can't walk or balance in regular shoes, any type of heel probably isn't the best decision.
We make it to Stake Conference and are ushered to the front so that Dale, Tressie, and I can sit together at the end of a row (while Miriam, Travis, and the rest of the girls get to sit in the back). Travis is carrying my bag, so it goes back with them without me realizing that I don't have it.
Almost as soon as I sit down, my foot starts throbbing. It's not so painful, but I can feel every heartbeat vibrating through it and there is a little pain associated with each beat.
"Dale, I think I need to go out and prop my foot up," I whisper to him. So a few minutes later, I'm hobbling on one good foot and dragging a large oxygen tank and its cart out the chapel doors to the nearest couch.
Tressie comes out a few seconds later and offers to drag a folding chair over as a place to prop up my foot and that's how we spend Stake Conference.
On Monday, my foot is a little swollen and a little bruised and I wonder how much damage I really did to it. Because I can't really feel it, is it possible I broke it and don't know?
Knowing my propensity for having multiple issues with my body, I head off to Urgent Care in Lindon.
"I need to have my left ankle x-rayed to ensure that I didn't break it," I inform the front desk staff and the attending nurse. I'm assured that I'm the next patient and that the doctor will be with me shortly.
After what seems like an hour and after I've had a chance to devour an entire magazine, I hobble out to find my sheet on the door and look at the time I was checked in. 11:08 a.m. It's now 12:06 p.m., so it has been an hour. I'm kind of surprised that my internal clock is so accurate.
When I ask the nurses how much longer, they agree it's been too long and they'll take me back for x-rays before the doctor sees me so he can look at them when he's finally finished with the other patient.
About ten minutes later, after x-rays, Dr. Garrett Smith comes in and says, "Yeah, well you did a good job. I'm pretty sure your ankle is broken. You'll need to be on crutches for at least two weeks."
Knowing what my body has been through and that chemo zaps calcium from bones, I automatically translate, "Okay for me, that means at least four weeks and probably more like six." Then I say, "Yeah, well as soon as you help me figure out how to hobble on crutches while dragging oxygen around, I'm all over your plan." Crutches are just not going to work.
During our conversation, I tell him that I can't really feel my feet due to the grade 3 or 4 peripheral neuropathy. Yet twice during our time together, he says "Just let pain be your guide. If it's hurts, don't walk on it" and "I can prescribe something for pain."
Pain? What pain? If I think about it hard, there might be some aching bone pain that might register about a 3 on the 1-10 usual pain scale. I'm certainly not taking anything (not even Ibuprofen) for a 3. And if I can walk on it as long as it doesn't hurt, I'm good to go now.
Nope, not without having to discuss whether we should cast it or put a walking boot on my left foot.
"What's the easiest to walk on?" I ask. Definitely the walking boot, so I'm fitted with a large, clunky, heavy black boot before managing to leave the office.
My life is a comedy of errors at this point. Hobbling around in a heavy walking boot and dragging oxygen is quite the balancing act, without bringing the numbness from the neuropathy into the equation. What else can I do at this point but just laugh? And laugh I do!
When one of my visiting teachers hears that I've broken my ankle, her first impression is to bring her family home from Disneyland so she can help me. Are you kidding? It's a great thought, but my ankle is just another silly part of my life right now. It's not like I need surgery or it's bad enough that I can't be mobile. It's just a laughable addition to my life at this point. The thought is comforting and amazing but definitely not needed!
Wednesday, January 2, 2013
Seventh Adcetris Dose
Dr. Wendy can no longer feel the largest tumor at the bend of my right leg. Wow! Wouldn't that be awesome if the cancer is gone!
I've lost 13 pounds since the last dose. That's just over 60 pounds total over the last nine months. Yahoo! I want to lose at least 15 pounds so I'm no longer in the obese BMI category. Dr. Wendy is concerned, but I've been eating well so I'm just grateful.
We have a longish conversation about peripheral neuropathy though. I'm not happy about that. I describe some of the limitations I've noticed:
* Fingers are completely numb and my hands are at least 3/4 numb.
* Forearms are at least 1/2 numb up to my elbow.
* Feet are at least 3/4 numb.
* Legs are at least 1/2 numb to the bottom of my knee.
* Typing is very difficult and I often hit the wrong key. Backspace is now my best friend.
* I can't play the piano or organ any more without having to watch my hands to see what keys I'm playing, plus I can't control that they continue to hold any keys so they randomly lift and quit playing at odd times on the organ.
* My handwriting has changed drastically and now reminds me of an 80 year-old woman's handwriting because it's difficult to hold a writing utensil and control the strokes.
* I can't button blouses or jeans or feel zippers to pull them up.
* Hooking my bra is impossible.
* Putting in earrings and--even more difficult--putting on their backs is now impossible.
* It's hard to walk in flats. Forget heels entirely!
* Balancing is almost impossible on dry ground. I fell in Target and have almost fallen twice at work. Didn't trip on anything; I just can't feel my feet to place each step securely and firmly.
After leaving the room for a few minutes, Dr. Wendy returns to say I have peripheral neuropathy, Grade 2 or 3. The guidelines for Adcetris call for stopping chemo until Grade 1 returns.
I'm not comfortable with that. These affects can be permanent. What if we never get back to Grade 1? After some discussion, she agrees to continue Adcetris, but on a reduced doseage. We will reduce the 1.8 unit/kg to 1.2 unit/kg. I don't like that we're reducing the dose by a full third, but at least we're continuing forward.
Do you know what else I've noticed? The doses are getting easier. What's up with that? In my entire history of chemo, every dose gets harder and harder--zapping almost all of my physical and emotional energy. Plus, every different chemo regimen gets harder and harder for my body because of all the former rounds (MOPP, ADV, ICE, BEAM, and now Adcetris) and poisons doctors pumped into it.
Not now. In fact, I've even started driving in to work 2-3 times a week. Wow! I'm am definitely not complaining. I have energy to do whatever I want (as long as I don't try to move my numb feet too fast) and I'm mentally alert as well.
The nausea is contained. The bone pain is being managed. This is great! More than I ever dared to hope or plan for. Hooray!
I've lost 13 pounds since the last dose. That's just over 60 pounds total over the last nine months. Yahoo! I want to lose at least 15 pounds so I'm no longer in the obese BMI category. Dr. Wendy is concerned, but I've been eating well so I'm just grateful.
We have a longish conversation about peripheral neuropathy though. I'm not happy about that. I describe some of the limitations I've noticed:
* Fingers are completely numb and my hands are at least 3/4 numb.
* Forearms are at least 1/2 numb up to my elbow.
* Feet are at least 3/4 numb.
* Legs are at least 1/2 numb to the bottom of my knee.
* Typing is very difficult and I often hit the wrong key. Backspace is now my best friend.
* I can't play the piano or organ any more without having to watch my hands to see what keys I'm playing, plus I can't control that they continue to hold any keys so they randomly lift and quit playing at odd times on the organ.
* My handwriting has changed drastically and now reminds me of an 80 year-old woman's handwriting because it's difficult to hold a writing utensil and control the strokes.
* I can't button blouses or jeans or feel zippers to pull them up.
* Hooking my bra is impossible.
* Putting in earrings and--even more difficult--putting on their backs is now impossible.
* It's hard to walk in flats. Forget heels entirely!
* Balancing is almost impossible on dry ground. I fell in Target and have almost fallen twice at work. Didn't trip on anything; I just can't feel my feet to place each step securely and firmly.
After leaving the room for a few minutes, Dr. Wendy returns to say I have peripheral neuropathy, Grade 2 or 3. The guidelines for Adcetris call for stopping chemo until Grade 1 returns.
I'm not comfortable with that. These affects can be permanent. What if we never get back to Grade 1? After some discussion, she agrees to continue Adcetris, but on a reduced doseage. We will reduce the 1.8 unit/kg to 1.2 unit/kg. I don't like that we're reducing the dose by a full third, but at least we're continuing forward.
Do you know what else I've noticed? The doses are getting easier. What's up with that? In my entire history of chemo, every dose gets harder and harder--zapping almost all of my physical and emotional energy. Plus, every different chemo regimen gets harder and harder for my body because of all the former rounds (MOPP, ADV, ICE, BEAM, and now Adcetris) and poisons doctors pumped into it.
Not now. In fact, I've even started driving in to work 2-3 times a week. Wow! I'm am definitely not complaining. I have energy to do whatever I want (as long as I don't try to move my numb feet too fast) and I'm mentally alert as well.
The nausea is contained. The bone pain is being managed. This is great! More than I ever dared to hope or plan for. Hooray!
Sunday, October 21, 2012
Cyclical Chemo
I've had five different regimens of chemo so far: MOPP at 7 years old, ADV at 40 years old, ICE and BEAM about a year ago at 42 years old, and now Adcetris at 44 years old.
With each regimen, you're told that the side effects of chemo are very cyclical. You get one dose and it starts working immediately. However, it takes a while for it to do its worst damage, so about 10 days after treatment is when your blood cell counts are supposed to be at their worst. That time period is called the nadir, or low point. Then, your body starts rebuilding and healing from the chemo, which usually takes about 10 days--just in time for your next dose.
So I've heard the cycle repeated over and over to me throughout the years while dealing with Hodgkins. But I've never felt it or even really noticed it as much as I do with Adcetris.
Day 1, Chemo day. I'm feeling pretty good: good energy, not so much pain, not nauseated. Overall, pretty good. Immediately, I notice more neuropathy (tingling in the tips of my hands) and the metallic taste in my mouth is back.
Days 2-8, Dropping down. Still have good energy, not so much pain, but the nausea is really picking up. Maybe I should think about switching medicines again. I'm starting to itch in strange places also, but it's not the frantic, insane itching that's coming.
Days 9-12, Low point. So tired. It hit today, suddenly, from my last dose (day 10). I fell asleep on the couch, sitting up, while watching TV. Weird! Abruptly, I'm feeling way more bone pain than usual also. It's a deep pain that's in the middle of my bones and attacks everything from my forearms and hands, to my shoulders, to my hips, legs, and feet. If it gets really bad, the pain start pulsing. With every heartbeat, I can feel the pain in every area simultaneously. Not fun! Nothing sounds good to eat. Even the taste in my mouth is enough to make me violently nauseous sometimes. Plus, I itch in random places. It's not like a lotion applied to my skin will help. This is a deep itch--that's coming from the inside out. I can take two Benadryl when it gets to the driving-me-absolutely-insane stage, and that helps somewhat. These are the days when it's hard to honestly answer the question "How are you doing," no matter how genuinely it's asked.
Days 13-16, Building up. Can pretty much eat anything I want without feeling nauseous, but the weird taste still lingers. I can accomplish a few tasks like cooking or cleaning a room without needing a nap afterward. And the pain is receding to a dull, constant ache in the background again.
Days 17-20, Back up. I'm feeling pretty good again. Good energy, not so much pain, metallic taste is gone. Yay. Must be time for another dose on day 21.
With each regimen, you're told that the side effects of chemo are very cyclical. You get one dose and it starts working immediately. However, it takes a while for it to do its worst damage, so about 10 days after treatment is when your blood cell counts are supposed to be at their worst. That time period is called the nadir, or low point. Then, your body starts rebuilding and healing from the chemo, which usually takes about 10 days--just in time for your next dose.
So I've heard the cycle repeated over and over to me throughout the years while dealing with Hodgkins. But I've never felt it or even really noticed it as much as I do with Adcetris.
Day 1, Chemo day. I'm feeling pretty good: good energy, not so much pain, not nauseated. Overall, pretty good. Immediately, I notice more neuropathy (tingling in the tips of my hands) and the metallic taste in my mouth is back.
Days 2-8, Dropping down. Still have good energy, not so much pain, but the nausea is really picking up. Maybe I should think about switching medicines again. I'm starting to itch in strange places also, but it's not the frantic, insane itching that's coming.
Days 9-12, Low point. So tired. It hit today, suddenly, from my last dose (day 10). I fell asleep on the couch, sitting up, while watching TV. Weird! Abruptly, I'm feeling way more bone pain than usual also. It's a deep pain that's in the middle of my bones and attacks everything from my forearms and hands, to my shoulders, to my hips, legs, and feet. If it gets really bad, the pain start pulsing. With every heartbeat, I can feel the pain in every area simultaneously. Not fun! Nothing sounds good to eat. Even the taste in my mouth is enough to make me violently nauseous sometimes. Plus, I itch in random places. It's not like a lotion applied to my skin will help. This is a deep itch--that's coming from the inside out. I can take two Benadryl when it gets to the driving-me-absolutely-insane stage, and that helps somewhat. These are the days when it's hard to honestly answer the question "How are you doing," no matter how genuinely it's asked.
Days 13-16, Building up. Can pretty much eat anything I want without feeling nauseous, but the weird taste still lingers. I can accomplish a few tasks like cooking or cleaning a room without needing a nap afterward. And the pain is receding to a dull, constant ache in the background again.
Days 17-20, Back up. I'm feeling pretty good again. Good energy, not so much pain, metallic taste is gone. Yay. Must be time for another dose on day 21.
Tuesday, September 18, 2012
Second Chemo Dose
That Neupogen worked! I guess all of those early morning drives to get injected were worth it.
I'm actually given the second chemo dose on Tuesday, September 18, after a quick blood draw indicated my cell levels were high enough.
I've realized that the only thing worse than getting chemo is needing it but not being able to get it because of low blood counts.
This time, they can give me one Neulasta shot if I come back tomorrow. Neulasta is like Neupogen; it's just the long-lasting type of growth cell stimulating factor (GCSF).
Because I have enough time scheduled between doses (at least 15 days), I qualify for Neulasta and not every day shots of Neupogen. I guess the insurance companies have really balked at paying for these drugs. Neulasta is easily over $1,000 per shot. The manufacturer claim it works best if given 24 hours after chemo and at least 15 days before chemo, so that narrow window cuts down on the amount of people that can get it.
Lucky me. No more early morning drives for a shot!
I'm actually given the second chemo dose on Tuesday, September 18, after a quick blood draw indicated my cell levels were high enough.
I've realized that the only thing worse than getting chemo is needing it but not being able to get it because of low blood counts.
This time, they can give me one Neulasta shot if I come back tomorrow. Neulasta is like Neupogen; it's just the long-lasting type of growth cell stimulating factor (GCSF).
Because I have enough time scheduled between doses (at least 15 days), I qualify for Neulasta and not every day shots of Neupogen. I guess the insurance companies have really balked at paying for these drugs. Neulasta is easily over $1,000 per shot. The manufacturer claim it works best if given 24 hours after chemo and at least 15 days before chemo, so that narrow window cuts down on the amount of people that can get it.
Lucky me. No more early morning drives for a shot!
Saturday, September 1, 2012
ER Visit and Supplemental Oxygen
It's late, late Friday evening. Why do abrupt changes in my medical status always seem to occur on Friday evenings--just after Urgent Care has closed and the only place for some help is the local ER? I hate the ER. If you're dying--absolutely cannot breathe, having a heart attack, bleeding to death, been shot, etc.--the ER is the place to head. If it's anything else, they're just going to bother you by running every test known to the medical staff so they rule out anything egregious and cover themselves and the hospital from any future claims of negligence.
Anyway, it's late. I've fallen asleep and wake up. Suddenly I notice (or finally pay attention to the fact) that I'm having a lot of trouble breathing. Crud! I'm pretty sure I know what this means. There were no PEs in my lungs, so I probably need supplemental oxygen at night. But the only way I can get it now is by visiting the ER. I definitely don't want to try and sleep without oxygen because O2 levels naturally go down a little as I sleep.
Sorry, Dale. It looks like we get to visit an ER yet again. We head out of the door about 11:30 p.m.
Unfortunately, our insurance changed and now we have to visit Timpanogos Regional Hospital, instead of the American Fork Hospital ER, which is just 1.7 miles from our house. The AF staff is kind of used to seeing me and really listen to what I tell them. When I had the PEs before, I marched into the triage area and said, "I'm having trouble breathing. I just came from my primary care physician's office, where my O2 was in the low 70s, and my blood pressure and heart rate are elevated. I need you to rule out: 1) sepsis or some kind of gross infection throughout my whole body 2) low red blood cell counts that need an infusion 3) pneumonia and 4) pulmonary embolisms." They listened, ran just the tests they needed to for those four conditions, and found the PEs.
Not Timp!
Why can't they just listen to me? After all of this time and all of these treatments and their side effects, they think they know my body better than I do? Ha!
I walked in and told them that I was having trouble breathing, and that I needed supplemental oxygen. I'd had blood work drawn on Wednesday that was all good and a PE scan on Thursday that was negative. I just need supplemental oxygen.
Nope. They get to run their standard battery of tests: chest x-ray, blood work, and more blood work. Each time a test is run, we have to wait 30 minutes to an hour to get the results. They don't even trust the blood count results from Wednesday. What's a girl to do? So far, everything has been normal and not actionable.
So next we get to try a breathing treatment. They don't work. They never work. They just make me feel jittery. I tell that to the poor respiratory therapist who comes to administer the treatment. She listens and offers to go fight it out with the ER doctor. After all, whose insurance company wants to pay for something that I don't want or need? After another 30 minutes of waiting, the ER doctor is back, ready to argue for his point of view. You know what? The area around my chest does feel tighter and more constricted than usual. Fine. I'll let you try the breathing treatment--not to help my lungs but to, hopefully, loosen the constriction and resulting sharp stabbing pains around my entire thoracic cavity. 30 minutes later: one breathing treatment administered, bodily shaking occuring, and the stabbing pains in my chest are lessened by maybe one tiny degree. Are we finally finished?
Another 30 minutes goes by, and it's time for one last chat with the doctor. They could do one more thing (which now I cannot remember), but I know it's going to be useless. I know, and now I know that they know, what I've been saying all night and early morning. My body needs supplemental oxygen. Please! Can we just get a tank and go now? Off the oxygen, my O2 readings drop down to about 73. On oxygen, only about one liter, it jumps right back up to the low 90s. Please!
There's some more delay as they figure out what medical supply company my insurance prefers. They're recommending Alpine Home Medical, but they're having a hard time locating an oxygen tank from Alpine. Finally, someone on another floor finds one tank that isn't labeled. They give it to me (after about 5.5 hours of waiting) with the promise that someone from Alpine will be at our house waiting for us to arrive so that they can deliver a concentrator.
We're finally back home about 4:00 a.m. Luckily, today is Saturday and we get to sleep in just a bit. I'm exhausted!
Anyway, it's late. I've fallen asleep and wake up. Suddenly I notice (or finally pay attention to the fact) that I'm having a lot of trouble breathing. Crud! I'm pretty sure I know what this means. There were no PEs in my lungs, so I probably need supplemental oxygen at night. But the only way I can get it now is by visiting the ER. I definitely don't want to try and sleep without oxygen because O2 levels naturally go down a little as I sleep.
Sorry, Dale. It looks like we get to visit an ER yet again. We head out of the door about 11:30 p.m.
Unfortunately, our insurance changed and now we have to visit Timpanogos Regional Hospital, instead of the American Fork Hospital ER, which is just 1.7 miles from our house. The AF staff is kind of used to seeing me and really listen to what I tell them. When I had the PEs before, I marched into the triage area and said, "I'm having trouble breathing. I just came from my primary care physician's office, where my O2 was in the low 70s, and my blood pressure and heart rate are elevated. I need you to rule out: 1) sepsis or some kind of gross infection throughout my whole body 2) low red blood cell counts that need an infusion 3) pneumonia and 4) pulmonary embolisms." They listened, ran just the tests they needed to for those four conditions, and found the PEs.
Not Timp!
Why can't they just listen to me? After all of this time and all of these treatments and their side effects, they think they know my body better than I do? Ha!
I walked in and told them that I was having trouble breathing, and that I needed supplemental oxygen. I'd had blood work drawn on Wednesday that was all good and a PE scan on Thursday that was negative. I just need supplemental oxygen.
Nope. They get to run their standard battery of tests: chest x-ray, blood work, and more blood work. Each time a test is run, we have to wait 30 minutes to an hour to get the results. They don't even trust the blood count results from Wednesday. What's a girl to do? So far, everything has been normal and not actionable.
So next we get to try a breathing treatment. They don't work. They never work. They just make me feel jittery. I tell that to the poor respiratory therapist who comes to administer the treatment. She listens and offers to go fight it out with the ER doctor. After all, whose insurance company wants to pay for something that I don't want or need? After another 30 minutes of waiting, the ER doctor is back, ready to argue for his point of view. You know what? The area around my chest does feel tighter and more constricted than usual. Fine. I'll let you try the breathing treatment--not to help my lungs but to, hopefully, loosen the constriction and resulting sharp stabbing pains around my entire thoracic cavity. 30 minutes later: one breathing treatment administered, bodily shaking occuring, and the stabbing pains in my chest are lessened by maybe one tiny degree. Are we finally finished?
Another 30 minutes goes by, and it's time for one last chat with the doctor. They could do one more thing (which now I cannot remember), but I know it's going to be useless. I know, and now I know that they know, what I've been saying all night and early morning. My body needs supplemental oxygen. Please! Can we just get a tank and go now? Off the oxygen, my O2 readings drop down to about 73. On oxygen, only about one liter, it jumps right back up to the low 90s. Please!
There's some more delay as they figure out what medical supply company my insurance prefers. They're recommending Alpine Home Medical, but they're having a hard time locating an oxygen tank from Alpine. Finally, someone on another floor finds one tank that isn't labeled. They give it to me (after about 5.5 hours of waiting) with the promise that someone from Alpine will be at our house waiting for us to arrive so that they can deliver a concentrator.
We're finally back home about 4:00 a.m. Luckily, today is Saturday and we get to sleep in just a bit. I'm exhausted!
Friday, August 31, 2012
Pulmonary Embolism Scare
It's funny. I did change my medications. The nausea is much better, and the burning in my stomach is down to a level that I can function again. I'm feeling a little better and it's been only 1.5 days since the changes. Surely, I'm going to feel even better after another day or two.
In fact, I feel so much better that I'm back at work.
Then I get a call from Kathy. She's just checking on me to see how I'm doing. When I tell her I'm feeling better--enough so that I can function without tears again, I expect her to end the call. But she doesn't.
Apparently, Dr. Wendy is now concerned that I feel so terrible. She knows that I had pulmonary embolisms in the past from the chemo or the port or some combination of the two, and she wants to ensure that I don't have any again.
Can I be to the Central Utah Clinic imaging department in American Fork in twenty minutes? No, I'm at work in downtown Salt Lake. Okay, can I get there before they close--around 4:15? Yes, that I can do if Dale can leave work 30 minutes early.
Giggling, Kathy warns me not eat or drink anything in the next 45 minutes as I'm racing off to the scan. It's supposed to be fasting scan. Oh well.
We make it to the clinic on time, have the CT scan, and are told that we can wait in the office for the results or go home and Dr. Wendy's office will call with the results. I know what that means. It's code for the technicians didn't see anything alarming, so they'll let me leave while the radiologist reviews it. It's a pretty good sign, so we opt to leave.
When we haven't heard anything from Dr. Wendy's office by 5:30, I pick up the phone to call. It rings in my hand. It's Kathy. No PEs. No real explanation for why I feel so tired, but just take care of myself and be alert for any changes.
Okay. Check and check!
In fact, I feel so much better that I'm back at work.
Then I get a call from Kathy. She's just checking on me to see how I'm doing. When I tell her I'm feeling better--enough so that I can function without tears again, I expect her to end the call. But she doesn't.
Apparently, Dr. Wendy is now concerned that I feel so terrible. She knows that I had pulmonary embolisms in the past from the chemo or the port or some combination of the two, and she wants to ensure that I don't have any again.
Can I be to the Central Utah Clinic imaging department in American Fork in twenty minutes? No, I'm at work in downtown Salt Lake. Okay, can I get there before they close--around 4:15? Yes, that I can do if Dale can leave work 30 minutes early.
Giggling, Kathy warns me not eat or drink anything in the next 45 minutes as I'm racing off to the scan. It's supposed to be fasting scan. Oh well.
We make it to the clinic on time, have the CT scan, and are told that we can wait in the office for the results or go home and Dr. Wendy's office will call with the results. I know what that means. It's code for the technicians didn't see anything alarming, so they'll let me leave while the radiologist reviews it. It's a pretty good sign, so we opt to leave.
When we haven't heard anything from Dr. Wendy's office by 5:30, I pick up the phone to call. It rings in my hand. It's Kathy. No PEs. No real explanation for why I feel so tired, but just take care of myself and be alert for any changes.
Okay. Check and check!
Wednesday, August 29, 2012
Feeling Like Crud!
I'm so tired. I'm in so much pain. My stomach has a fire burning across it almost constantly. I don't ever remember feeling like this from chemo--especially from a chemo that's supposed to be kinder and gentler.
Okay, I give up. I won't ignore all of this crud any longer. I've got to find out what's causing it and how to fix it.
* Nausea? The promethazine and zofran (ondansestron) combination really isn't working. It just knocks me out, so surely we can try something else. Check, I have a plan of attack.
* Low energy? Maybe my blood counts are really, really low and that's why I'm so lethargic. Fine. We can test that from a quick blood draw from my port. Check.
* Bone pain? Oh yes. There's some secret combination of drugs that's supposed to help that, but I can't remember what it is. I know who to ask though. Check.
* Stomach pain? Think Trish. What's causing my gut to be on fire? Hmmmm. Wonder if there's anything I can do for bowel trouble? Check.
Those are the biggies. Now I have an action plan for each of them, so I go hobbling into Dr. Wendy's office and ask to speak to Kathy. After talking with her through each item, I've convinced them to check my blood cell counts, order a different antiemetic, reveal the combination of one Claritin and one Aleve every 12 hours for bone pain (who would ever guess that it's that combination that helps bone pain the most?), and recommend four different things to try for tummy troubles.
I'm feeling better just knowing that we're going to try some different things and that I don't have to live with all of this bothersomeness anymore.
After about 10 minutes of waiting for the results of the blood counts, I'm not so sure. They're great--even just a bit high (but not concerningly so).
Now what? I guess it's time to go home, change to the new medications, and see what life has next on its agenda.
Okay, I give up. I won't ignore all of this crud any longer. I've got to find out what's causing it and how to fix it.
* Nausea? The promethazine and zofran (ondansestron) combination really isn't working. It just knocks me out, so surely we can try something else. Check, I have a plan of attack.
* Low energy? Maybe my blood counts are really, really low and that's why I'm so lethargic. Fine. We can test that from a quick blood draw from my port. Check.
* Bone pain? Oh yes. There's some secret combination of drugs that's supposed to help that, but I can't remember what it is. I know who to ask though. Check.
* Stomach pain? Think Trish. What's causing my gut to be on fire? Hmmmm. Wonder if there's anything I can do for bowel trouble? Check.
Those are the biggies. Now I have an action plan for each of them, so I go hobbling into Dr. Wendy's office and ask to speak to Kathy. After talking with her through each item, I've convinced them to check my blood cell counts, order a different antiemetic, reveal the combination of one Claritin and one Aleve every 12 hours for bone pain (who would ever guess that it's that combination that helps bone pain the most?), and recommend four different things to try for tummy troubles.
I'm feeling better just knowing that we're going to try some different things and that I don't have to live with all of this bothersomeness anymore.
After about 10 minutes of waiting for the results of the blood counts, I'm not so sure. They're great--even just a bit high (but not concerningly so).
Now what? I guess it's time to go home, change to the new medications, and see what life has next on its agenda.
Tuesday, August 28, 2012
Peripheral Neuropathy and Nausea
Silly me! I guess I was hoping for no side effects because Adcetris is kinder and more gentle than other chemo drugs. Ha! It is still chemo, Trish. Time to pull your head out of the sand and face facts.
So that stomach rumbling, growling, and intermittent nausea isn't from the antibiotic that I've been on but finished Sunday? Nope. I figure that out just yesterday about mid-afternoon.
That terrible metallic taste in my mouth that I've been trying to ignore? Yea, that's chemo too.
And the strange sensations, almost like small electrical charges, in my fingers? Ka-ching! Welcome to the wonderland of chemo again.
I haven't been taking my anti-nausea drugs. (I didn't want to need them this time, so I've just been dealing with it.) But I start taking ondansetron (Zofran) every six hours. That one is no problem to take, but it's not working by itself. Crud!
Now I have to start adding promethazine (Phenergan) in the schedule. And it knocks me out too. By 7 p.m., I'm ready to sleep through the night.
Apparently, our neighbors had a huge kitchen fire just a few feet away from where I'm napping on the couch. At least four big fire engines came, sirens blaring; but I didn't hear anything.
I hate not having the full use of my brain. I don't want to sleep away what's left of my life. I've got to figure out something else that will work. Crud!
So that stomach rumbling, growling, and intermittent nausea isn't from the antibiotic that I've been on but finished Sunday? Nope. I figure that out just yesterday about mid-afternoon.
That terrible metallic taste in my mouth that I've been trying to ignore? Yea, that's chemo too.
And the strange sensations, almost like small electrical charges, in my fingers? Ka-ching! Welcome to the wonderland of chemo again.
I haven't been taking my anti-nausea drugs. (I didn't want to need them this time, so I've just been dealing with it.) But I start taking ondansetron (Zofran) every six hours. That one is no problem to take, but it's not working by itself. Crud!
Now I have to start adding promethazine (Phenergan) in the schedule. And it knocks me out too. By 7 p.m., I'm ready to sleep through the night.
Apparently, our neighbors had a huge kitchen fire just a few feet away from where I'm napping on the couch. At least four big fire engines came, sirens blaring; but I didn't hear anything.
I hate not having the full use of my brain. I don't want to sleep away what's left of my life. I've got to figure out something else that will work. Crud!
Friday, August 24, 2012
The Chemo Plan and First Dose
So here's the plan for using Adcetris (brentuximab vedotin):
* Starting today, every three weeks, for a maximum of 16 doses (16x3=48 weeks, almost a year. I hope we don't go that long) until the maximum effect is reached (Hodgkins is gone or reaches a plateau and is no longer reducing.)
* We'll start the infusion with Benadryl. Even though the literature doesn't call for it, Dr. Wendy wants to ensure that I don't have some sort of allergic reaction to the drug. (Uh oh. That stuff knocks me out--hard!)
* We'll also infuse Zofran (an anti-nausea medication).
* We'll repeat CT scans every 2 doses to measure any progress.
* It should be a kinder and more gentle chemo than I've ever had before because it's specifically targeting Hodgkins cells. Of course, there will be some collateral damage along the way.
It's all pretty standard information to me. When Kathy comes to walk through what to expect and answer any questions, she has a copy of the Adcetris patient pamphlet (which I've already read on the Web). She doesn't have any other information for me because it's so new and no one in Utah County that she knows of has ever used it.
The Benadryl takes about an hour to infuse; the Zofran takes another 30 minutes. Finally we're ready for the good stuff (or is that bad stuff). The Adcetris takes another 30 minutes.
Dale and I are playing cribbage (our standard chemo activity), but that darn Benadryl is really messing with my head. I can't concentrate anymore. All I want to do is sleep.
Even though we came to Dr. Wendy's at 9:30 this morning and the chemo takes only 30 minutes to infuse, we don't leave her office until almost 2 p.m. Whew! I guess times really flies when you're having fun. (I need to redefine what having fun is in my life!)
When we get home, Dale's trying to plan meals for the weekend. However, while trying to answer one question, I've fallen asleep--sometimes in the middle of a word--about 10 times. He gives up and lets me sleep.
Darn that Benadryl! I want to see if we can try the chemo without it next time. How am I supposed to work from home if I can't stay awake?
So next chemo appointment is Wednesday, September 12 at 9:40 a.m. One day--or dose--at a time.
* Starting today, every three weeks, for a maximum of 16 doses (16x3=48 weeks, almost a year. I hope we don't go that long) until the maximum effect is reached (Hodgkins is gone or reaches a plateau and is no longer reducing.)
* We'll start the infusion with Benadryl. Even though the literature doesn't call for it, Dr. Wendy wants to ensure that I don't have some sort of allergic reaction to the drug. (Uh oh. That stuff knocks me out--hard!)
* We'll also infuse Zofran (an anti-nausea medication).
* We'll repeat CT scans every 2 doses to measure any progress.
* It should be a kinder and more gentle chemo than I've ever had before because it's specifically targeting Hodgkins cells. Of course, there will be some collateral damage along the way.
It's all pretty standard information to me. When Kathy comes to walk through what to expect and answer any questions, she has a copy of the Adcetris patient pamphlet (which I've already read on the Web). She doesn't have any other information for me because it's so new and no one in Utah County that she knows of has ever used it.
The Benadryl takes about an hour to infuse; the Zofran takes another 30 minutes. Finally we're ready for the good stuff (or is that bad stuff). The Adcetris takes another 30 minutes.
Dale and I are playing cribbage (our standard chemo activity), but that darn Benadryl is really messing with my head. I can't concentrate anymore. All I want to do is sleep.
Even though we came to Dr. Wendy's at 9:30 this morning and the chemo takes only 30 minutes to infuse, we don't leave her office until almost 2 p.m. Whew! I guess times really flies when you're having fun. (I need to redefine what having fun is in my life!)
When we get home, Dale's trying to plan meals for the weekend. However, while trying to answer one question, I've fallen asleep--sometimes in the middle of a word--about 10 times. He gives up and lets me sleep.
Darn that Benadryl! I want to see if we can try the chemo without it next time. How am I supposed to work from home if I can't stay awake?
So next chemo appointment is Wednesday, September 12 at 9:40 a.m. One day--or dose--at a time.
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