Time to meet with Dr. Wendy for the results of the PET scan.
Dale has to work, so Miriam graciously agrees to accompany me.
I'm not sure what the results will show, so I prepare as if I need more chemo (darn that itchiness!) and pack my water bottle, two games we can play, and a book I can read if Miriam is tired of games.
Here we go!
After the preliminary check-in stuff (weight, review medications, BP, O2, heart rate, and temperature), I hear the familiar click-clacking of Dr. Wendy's heels leading to my exam room door.
And. . .
IT'S GREAT NEWS! No more cancer. For the fifth time in my life, I'm officially in remission.
A quick blood draw from my port and we're out of there.
I'm ecstatic! Time to party! When I tell Miriam that we need to celebrate, she suggests that we have a big party tomorrow night. No, wait, this is big enough (beating cancer five freaking times!) that we need to make it a country-wide thing. Miriam says, "No, a world-wide party."
So here goes. . .
THE WORLD is officially invited to celebrate that I, Trisha Mae (Turner) Howard am officially in remission from Hodgkins lymphoma for the fifth time in my life,
On Tuesday, December 31, 2013 in the evening hours,
By eating treats, playing games, and gathering with family and friends.
That doesn't seem big enough somehow. Heck!
Light off fireworks too. And gather in large groups if you're near metropolitan areas!
It's party time everyone :-)
There! That seems fitting now.
Purple Everywhere
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Showing posts with label PET scan. Show all posts
Showing posts with label PET scan. Show all posts
Monday, December 30, 2013
Sunday, December 29, 2013
Waiting Is the Hardest Part
PET scan was complete on Thursday (12/26).
Dr. Breyer called me personally with the results of the last PET scan on Friday night about 6:00 pm. So I waited, hoping to hear the results of this scan, but no phone call.
It's okay. The scan will either show less cancer than last time, or no cancer.
But dealing with the "What ifs" that go with each scenario are the hardest part!!!!
And, if I'm being honest, my back is almost incessantly itchy again, just like it has been for the previous three Hodgkins occurrences. (I don't remember it itching when I was 7.) The itchiness is what clued me in that the Hodgkins was back after the aortic valve replacement, so that's not a good sign. I guess it's possible that the scan could show more cancer than last time because it's spread or the Adcetris has stopped being effective,
I make it through to Sunday night okay and am able to sleep pretty well. However, Sunday I have to watch an entire movie before I'm finally able to sleep around midnight.
We'll know in the morning!
Dr. Breyer called me personally with the results of the last PET scan on Friday night about 6:00 pm. So I waited, hoping to hear the results of this scan, but no phone call.
It's okay. The scan will either show less cancer than last time, or no cancer.
But dealing with the "What ifs" that go with each scenario are the hardest part!!!!
And, if I'm being honest, my back is almost incessantly itchy again, just like it has been for the previous three Hodgkins occurrences. (I don't remember it itching when I was 7.) The itchiness is what clued me in that the Hodgkins was back after the aortic valve replacement, so that's not a good sign. I guess it's possible that the scan could show more cancer than last time because it's spread or the Adcetris has stopped being effective,
I make it through to Sunday night okay and am able to sleep pretty well. However, Sunday I have to watch an entire movie before I'm finally able to sleep around midnight.
We'll know in the morning!
Thursday, December 26, 2013
PET Scan Time
It's almost rude.
It's 8:15 am the day after Christmas; and, once again, I'm forced to focus in on Hodgkins lymphoma. This time it's because I need to be at UVRMC in Provo by 8:45 for a PET scan.
After four doses of Adcetris (brentuximab vedontin), it's time to see if that chemo has done it's job.
I hate how you have to register at a kiosk, by typing in your last name, first name, birth month and day, and the department you need. Then wait in a reception area to register.
So what was that registration at the kiosk? And what was that phone call I answered about three days ago to pre-register?
I have to answer questions over the phone to pre-register, register at a kiosk, and then wait to register again for the final time?
Someone needs to fix this system!
It's also interesting to me that IHC hospitals require a finger poke to check liver function before they'll let you absorb contrast into your body. (To whine for a moment, I hate the finger pokes. I'd rather you draw my blood than poke my finger; a needle stick hurts less than the puncture wound.)
Plus, lately, it's not just a simple poke. They really have to jab deep because they're filling three pipettes (or small tubes) with blood. I know they're also testing blood glucose levels, but diabetic meters are all boasting how little blood they require these days--less than a drop.
So why three pipettes? Why the deep stab? Why the 2-3 minute process to "milk" my finger and squeeze all the blood you possibly can from the end of my nerve-damaged finger?
Luckily, the first part of the process goes fairly smoothly: access the port, inject the radioactive sugar, dim the lights and have me recline in a chair and wait 70 minutes while occasionally drinking about 16 oz. of oral contrast.
As I'm resting, I'm trying to count how many PET scans I have thus far in my life: at least 4-5 in the portable trailer at American Fork Hospital, at least 2 at Huntsman, one at the hospital off 5300 South in Salt Lake, and now this one at UVRMC. At least 8 total, and I'm pretty sure I'm forgetting at least two. Whew!
From all of those PET scans, I'm getting really good at judging how much time has passed while I'm resting and waiting for any cancerous lymph nodes in my body to absorb the radioactive sugar. Try it. If you're forced to rest in a dim room and do absolutely nothing but sit and wait, can you judge when 60-70 minutes are up?
Time for the CT and PET scans. Nothing new there either. Lay down on my back on a narrow hard table with my head in a strange foam pillow, arms above my head, stay absolutely still as the machine does 2-3 quick passes for the CT scan without contrast, then continue as the machine starts at my knees and spins about five minute, then moves to the next position (for a total of five different positions) until about 30 minutes have passed, then inject the IV contrast (that makes your lower abdomen feel very warm--like you've wet yourself) and wait for another 1-2 quick passes of the CT scan with contrast.
Ta-duh! Unhook the contrast tubing, flush the port, de-access the port, and you're now free to leave the premises with no hint as to any results.
Isn't modern medicine fun? lol
It's 8:15 am the day after Christmas; and, once again, I'm forced to focus in on Hodgkins lymphoma. This time it's because I need to be at UVRMC in Provo by 8:45 for a PET scan.
After four doses of Adcetris (brentuximab vedontin), it's time to see if that chemo has done it's job.
I hate how you have to register at a kiosk, by typing in your last name, first name, birth month and day, and the department you need. Then wait in a reception area to register.
So what was that registration at the kiosk? And what was that phone call I answered about three days ago to pre-register?
I have to answer questions over the phone to pre-register, register at a kiosk, and then wait to register again for the final time?
Someone needs to fix this system!
It's also interesting to me that IHC hospitals require a finger poke to check liver function before they'll let you absorb contrast into your body. (To whine for a moment, I hate the finger pokes. I'd rather you draw my blood than poke my finger; a needle stick hurts less than the puncture wound.)
Plus, lately, it's not just a simple poke. They really have to jab deep because they're filling three pipettes (or small tubes) with blood. I know they're also testing blood glucose levels, but diabetic meters are all boasting how little blood they require these days--less than a drop.
So why three pipettes? Why the deep stab? Why the 2-3 minute process to "milk" my finger and squeeze all the blood you possibly can from the end of my nerve-damaged finger?
Luckily, the first part of the process goes fairly smoothly: access the port, inject the radioactive sugar, dim the lights and have me recline in a chair and wait 70 minutes while occasionally drinking about 16 oz. of oral contrast.
As I'm resting, I'm trying to count how many PET scans I have thus far in my life: at least 4-5 in the portable trailer at American Fork Hospital, at least 2 at Huntsman, one at the hospital off 5300 South in Salt Lake, and now this one at UVRMC. At least 8 total, and I'm pretty sure I'm forgetting at least two. Whew!
From all of those PET scans, I'm getting really good at judging how much time has passed while I'm resting and waiting for any cancerous lymph nodes in my body to absorb the radioactive sugar. Try it. If you're forced to rest in a dim room and do absolutely nothing but sit and wait, can you judge when 60-70 minutes are up?
Time for the CT and PET scans. Nothing new there either. Lay down on my back on a narrow hard table with my head in a strange foam pillow, arms above my head, stay absolutely still as the machine does 2-3 quick passes for the CT scan without contrast, then continue as the machine starts at my knees and spins about five minute, then moves to the next position (for a total of five different positions) until about 30 minutes have passed, then inject the IV contrast (that makes your lower abdomen feel very warm--like you've wet yourself) and wait for another 1-2 quick passes of the CT scan with contrast.
Ta-duh! Unhook the contrast tubing, flush the port, de-access the port, and you're now free to leave the premises with no hint as to any results.
Isn't modern medicine fun? lol
Monday, October 7, 2013
It's Just a Hiccup
It's Monday morning and I get a phone call from Dr. Julie Asch at LDS Hospital.
She starts, a little hesitantly, "So you had a PET scan on Friday."
"Yep, and I've already read the results. I told my husband in the ER on Saturday after reading the report that it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though because we caught it fast. Maybe two doses of chemo will kill it?"
She laughs. "You're right. And exactly along the lines that I was thinking. So it's good we're both on board."
"I predicted this would happen--that the Hodgkins would come back if we had to wait more than four months after the radiation was over for my heart to heal before we proceeded to the second bone marrow transplant."
"After you're done with these cancer treatments, I'm going to hire you."
"No, I know my own body well, but I can't do this for anyone else."
"Well, I'll turn you over to Dr. Wendy then for a few more chemo treatments, and see you when that's over."
Later that night, I ask Dale how he's feeling. To me, this occurrence is just a hiccup, a slight detour from the path. But how is he feeling to know that I have cancer for the fifth freaking time?
And he concurs. "It's just a hiccup, Trish."
We must be the weirdest people in the world. I'm sure some people would be in a major depression to hear that they have cancer; some probably contemplate suicide or think their life is practically over with such a diagnosis.
Us? It's just a hiccup. No biggie.
She starts, a little hesitantly, "So you had a PET scan on Friday."
"Yep, and I've already read the results. I told my husband in the ER on Saturday after reading the report that it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though because we caught it fast. Maybe two doses of chemo will kill it?"
She laughs. "You're right. And exactly along the lines that I was thinking. So it's good we're both on board."
"I predicted this would happen--that the Hodgkins would come back if we had to wait more than four months after the radiation was over for my heart to heal before we proceeded to the second bone marrow transplant."
"After you're done with these cancer treatments, I'm going to hire you."
"No, I know my own body well, but I can't do this for anyone else."
"Well, I'll turn you over to Dr. Wendy then for a few more chemo treatments, and see you when that's over."
Later that night, I ask Dale how he's feeling. To me, this occurrence is just a hiccup, a slight detour from the path. But how is he feeling to know that I have cancer for the fifth freaking time?
And he concurs. "It's just a hiccup, Trish."
We must be the weirdest people in the world. I'm sure some people would be in a major depression to hear that they have cancer; some probably contemplate suicide or think their life is practically over with such a diagnosis.
Us? It's just a hiccup. No biggie.
Saturday, October 5, 2013
Time For the Second Bone Marrow Transplant Yet
It's the end of September when cardiac rehab is finished (or I decide I'm finished with it), so time to start talking about the second bone marrow transplant.
Rachael calls to let me know she'll start scheduling tests, and I ask her if we can start with a PET scan.
Call me paranoid, but it's been about four months since the last radiation treatment, and my back is itchy again. It's itchy in a slightly different place than it has been in the past when I've had Hodgkins, but I'm thinking the cancer is back again.
She says I've earned the right to be paranoid and I know my body, so she'll schedule the PET scan.
***************
It's set for the hospital off 5300 South in the Salt Lake valley for Friday, October 4 at 9:30 a.m.
It goes really smoothly.
***************
However, the day after, my stomach really hurts--bad.
I try to deal with it all day, but later that evening, it's getting worse, and I'm starting to feel nauseous. I wonder if it's my gallbladder or something else going wrong.
Dale's still at work, but I finally decide I'd better go to the ER before I do some serious damage to my body from ignoring the pain.
In the ER, I tell the doctor my four ideas for what's causing the pain:
* My gallbladder. (Nope, wrong side.)
* Something to do with radiation treatments. (No, that wouldn't cause this kind of pain so long after treatment.)
* Some effect from stopping steroids without gradually weaning off them. (Probably not because I wasn't taking what's usually thought of as high-dose steroids, which do need to be tapered off gradually. However, there is some merit to my idea.)
* Some hernia or strange other problem. (Not sure.)
He decides to do a CT scan, when I mention to him that I just had a PET/CT scan at an IHC hospital yesterday. He could probably pull up the results and see the area of my abdomen that's hurting.
He asks if I want pain medication, but I refuse. I'm tough. I'm not one of those people that come to the ER seeking pain killers. It's okay.
About two hours later, I acquiesce though and ask for something to help with the pain. It's immediately effective. Why did I wait so long?
And he comes with a copy of the PET results. After skimming them, I announce to Dale, "Okay, so it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though. We caught it fast. Maybe two doses of chemo would kill it?"
After running another CT scan (because yesterday's didn't show that area well), the ER doctor figures out that I probably have gastritis from the steroids, tells me to eat an all-liquid diet for 2 days, and sends me home.
Rachael calls to let me know she'll start scheduling tests, and I ask her if we can start with a PET scan.
Call me paranoid, but it's been about four months since the last radiation treatment, and my back is itchy again. It's itchy in a slightly different place than it has been in the past when I've had Hodgkins, but I'm thinking the cancer is back again.
She says I've earned the right to be paranoid and I know my body, so she'll schedule the PET scan.
***************
It's set for the hospital off 5300 South in the Salt Lake valley for Friday, October 4 at 9:30 a.m.
It goes really smoothly.
***************
However, the day after, my stomach really hurts--bad.
I try to deal with it all day, but later that evening, it's getting worse, and I'm starting to feel nauseous. I wonder if it's my gallbladder or something else going wrong.
Dale's still at work, but I finally decide I'd better go to the ER before I do some serious damage to my body from ignoring the pain.
In the ER, I tell the doctor my four ideas for what's causing the pain:
* My gallbladder. (Nope, wrong side.)
* Something to do with radiation treatments. (No, that wouldn't cause this kind of pain so long after treatment.)
* Some effect from stopping steroids without gradually weaning off them. (Probably not because I wasn't taking what's usually thought of as high-dose steroids, which do need to be tapered off gradually. However, there is some merit to my idea.)
* Some hernia or strange other problem. (Not sure.)
He decides to do a CT scan, when I mention to him that I just had a PET/CT scan at an IHC hospital yesterday. He could probably pull up the results and see the area of my abdomen that's hurting.
He asks if I want pain medication, but I refuse. I'm tough. I'm not one of those people that come to the ER seeking pain killers. It's okay.
About two hours later, I acquiesce though and ask for something to help with the pain. It's immediately effective. Why did I wait so long?
And he comes with a copy of the PET results. After skimming them, I announce to Dale, "Okay, so it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though. We caught it fast. Maybe two doses of chemo would kill it?"
After running another CT scan (because yesterday's didn't show that area well), the ER doctor figures out that I probably have gastritis from the steroids, tells me to eat an all-liquid diet for 2 days, and sends me home.
Friday, April 5, 2013
Next, Next Step
Back to Dr. Wendy's office to find out the results of the recent PET scan.
I wonder what we'll find out, but I have absolutely no inspiration or feelings as to the results. It would be great if the cancer was totally gone, but either way it means radiation.
These are all the possibilities for this fourth occurrence of Hodgkins Lymphoma and their probable courses of action that I can come up with:
* It's gone, so we'll do follow up salvage radiation like we did before on my left inguinal lymph nodes.
* It's in one place only (right inguinal lymph node), so we'll do targeted radiation to remove it completed.
* It's in more than one place, so we'll continue chemo (for up to four more doses) as long as it's responding (shrinking) to the Adcetris.
Dr. Wendy reads part of the PET report to me. There's still lymphoma in my right inguinal lymph node. Originally, it measured over 19 on the activity level of the PET, now it's barely over 2. But there's no activity anywhere else.
Okay, no real surprises there. So all of the other eight spots that originally showed cancerous activity are gone. And the one remaining place is so, so close to being gone that chemo won't reach it anymore. So she's recommending me to Dr. Jay Clark for radiation treatments.
I don't know how those treatments will differ (if at all) from the salvage chemo I received last time, but that was easy with no side effects. Hopefully, it will be more of the same this time.
Oh wait. What about the possibility of a second bone marrow transplant, I ask. When should I follow up with the BMT team at LDS Hospital?
With a slightly surprised look, Dr. Wendy responds that I should probably consult with them before doing any radiation treatments because she doesn't want the radiation treatments to conflict with anything the BMT team wants to do. So wait to hear from LDS Hospital before scheduling with Dr. Jay.
Whew! It's a good thing that patients advocate for themselves and keep their doctors on track.
I wait to hear from Rachel Beers at LDS Hospital. She feels like one of my best friends by now after being the point of contact throughout the entire autologous bone marrow transplant process. She got a very terse message from Dr. Wendy's office and calls me for clarification. I'm able to clarify that the lymphoma is very close to being gone but needs radiation and we don't want to proceed with that step if it will interfere with the possibility of an allogeneic (from a donor) bone marrow transplant.
After checking with Dr. Julie Asch (another friend by this point of my life), she assures me that I can proceed with radiation.
I call Dr. Jay's office, only to find out that Corinne left early and forwarded all calls to, what seems like, an older female friend. That person isn't in the office and doesn't have access to the appointment books so now I have to wait for Monday to call. Annoying because I'm supposed to be covering for my team at work while they attend a conference in San Diego. I don't know whether to go to work on Monday to cover for my team or try and work from home with the hope that Dr. Jay can fit me in his schedule on Monday.
Why do health professionals have to take off before 4:30 p.m. on Friday without any way to get answers to pressing medical questions?
I wonder what we'll find out, but I have absolutely no inspiration or feelings as to the results. It would be great if the cancer was totally gone, but either way it means radiation.
These are all the possibilities for this fourth occurrence of Hodgkins Lymphoma and their probable courses of action that I can come up with:
* It's gone, so we'll do follow up salvage radiation like we did before on my left inguinal lymph nodes.
* It's in one place only (right inguinal lymph node), so we'll do targeted radiation to remove it completed.
* It's in more than one place, so we'll continue chemo (for up to four more doses) as long as it's responding (shrinking) to the Adcetris.
Dr. Wendy reads part of the PET report to me. There's still lymphoma in my right inguinal lymph node. Originally, it measured over 19 on the activity level of the PET, now it's barely over 2. But there's no activity anywhere else.
Okay, no real surprises there. So all of the other eight spots that originally showed cancerous activity are gone. And the one remaining place is so, so close to being gone that chemo won't reach it anymore. So she's recommending me to Dr. Jay Clark for radiation treatments.
I don't know how those treatments will differ (if at all) from the salvage chemo I received last time, but that was easy with no side effects. Hopefully, it will be more of the same this time.
Oh wait. What about the possibility of a second bone marrow transplant, I ask. When should I follow up with the BMT team at LDS Hospital?
With a slightly surprised look, Dr. Wendy responds that I should probably consult with them before doing any radiation treatments because she doesn't want the radiation treatments to conflict with anything the BMT team wants to do. So wait to hear from LDS Hospital before scheduling with Dr. Jay.
Whew! It's a good thing that patients advocate for themselves and keep their doctors on track.
I wait to hear from Rachel Beers at LDS Hospital. She feels like one of my best friends by now after being the point of contact throughout the entire autologous bone marrow transplant process. She got a very terse message from Dr. Wendy's office and calls me for clarification. I'm able to clarify that the lymphoma is very close to being gone but needs radiation and we don't want to proceed with that step if it will interfere with the possibility of an allogeneic (from a donor) bone marrow transplant.
After checking with Dr. Julie Asch (another friend by this point of my life), she assures me that I can proceed with radiation.
I call Dr. Jay's office, only to find out that Corinne left early and forwarded all calls to, what seems like, an older female friend. That person isn't in the office and doesn't have access to the appointment books so now I have to wait for Monday to call. Annoying because I'm supposed to be covering for my team at work while they attend a conference in San Diego. I don't know whether to go to work on Monday to cover for my team or try and work from home with the hope that Dr. Jay can fit me in his schedule on Monday.
Why do health professionals have to take off before 4:30 p.m. on Friday without any way to get answers to pressing medical questions?
Monday, April 1, 2013
PET Scan
I was too sick with bronchitis last Thursday when the PET scan was originally scheduled, so it's rescheduled for today at 12:30 p.m. at Huntsman Cancer Institute.
It's a beautiful building with amazing materials and gorgeous stone that high on the mountainside behind Primary Childrens and the University of Utah hospitals. Just walking in seems like entering a place of authority that knows what it's doing and calm assurance.
I get to third floor radiology and am almost immediately taken back for the PET scan.
Whoops, but my port isn't accessed and the technicians haven't been trained how to access ports. Weird, because I swear that last time, they accessed it okay.
But they have to find someone else that can access ports, so I'm wheeled off to mammography or the breast health department (trying to balance a large oxygen tank and it's cart on top of the arm rests) that's just down the hallway.
I'm amazed to watch as the nurse in the lab has to use sterile technique to access the port and even comment about it. It's interesting to see the different protocols that different medical facilities use, because Dr. Wendy's clinic (which is part of Huntsman Cancer Institute) doesn't use sterile technique, just a fresh pair of gloves to access my port.
The port is successfully accessed, so I'm wheeled back to radiology where the radioactive isotope is injected and the long waiting period begins.
The lights are dimmed, I'm covered with two warm blankets, and I proceed to rest quietly (without moving) for 75 minutes. I'm getting pretty good at accounting for the passage of time because just about when I think it's been 75 minutes, the doors open and I'm whisked off to the CT/PET machine.
No oral or IV contrast, and the scans are complete in about 35 minutes.
I'm free for the rest of the day. Well, as free as I can be with a walking boot on my left foot and dragging a large oxygen tank and its cart behind me. I even manage to snag a fun size Twix bar from the valet attendants that's left over from Easter (because I've been fasting since 6 a.m. and it's now after 3:00 p.m.).
Now to drive back home.
It's a beautiful building with amazing materials and gorgeous stone that high on the mountainside behind Primary Childrens and the University of Utah hospitals. Just walking in seems like entering a place of authority that knows what it's doing and calm assurance.
I get to third floor radiology and am almost immediately taken back for the PET scan.
Whoops, but my port isn't accessed and the technicians haven't been trained how to access ports. Weird, because I swear that last time, they accessed it okay.
But they have to find someone else that can access ports, so I'm wheeled off to mammography or the breast health department (trying to balance a large oxygen tank and it's cart on top of the arm rests) that's just down the hallway.
I'm amazed to watch as the nurse in the lab has to use sterile technique to access the port and even comment about it. It's interesting to see the different protocols that different medical facilities use, because Dr. Wendy's clinic (which is part of Huntsman Cancer Institute) doesn't use sterile technique, just a fresh pair of gloves to access my port.
The port is successfully accessed, so I'm wheeled back to radiology where the radioactive isotope is injected and the long waiting period begins.
The lights are dimmed, I'm covered with two warm blankets, and I proceed to rest quietly (without moving) for 75 minutes. I'm getting pretty good at accounting for the passage of time because just about when I think it's been 75 minutes, the doors open and I'm whisked off to the CT/PET machine.
No oral or IV contrast, and the scans are complete in about 35 minutes.
I'm free for the rest of the day. Well, as free as I can be with a walking boot on my left foot and dragging a large oxygen tank and its cart behind me. I even manage to snag a fun size Twix bar from the valet attendants that's left over from Easter (because I've been fasting since 6 a.m. and it's now after 3:00 p.m.).
Now to drive back home.
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