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 Hodgkins lymphoma. Show all posts
Showing posts with label Hodgkins lymphoma. 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!
Thursday, February 6, 2014
Miracles of Priesthood Blessings
I received a blessing tonight that absolutely seemed incredible and helped most of my concerns for this transplant go away.
I was promised:
* Peace and comfort.
* That my desires and hopes for this transplant will come true through this procedure.
* I will have the longevity I desire through this process.
* That the doctors and nurses and medical personnel will have the wisdom to know how to help me the best.
* There will be complications, but they will short in nature.
* I will feel the love of my Savior and Heavenly Father and family and friends.
* Through the prayers of those I know and who know me, I will be healed.
Hooray. There's truth behind some of the optimism I've been feeling. Hooray for the power of the priesthood and our Savior's and Father's involvement with our sometimes seemingly insignificant lives on this Earth. Our lives are not insignificant to them!
And thank you for your prayers and kind words and concerns. You are going to help heal me!
I was promised:
* Peace and comfort.
* That my desires and hopes for this transplant will come true through this procedure.
* I will have the longevity I desire through this process.
* That the doctors and nurses and medical personnel will have the wisdom to know how to help me the best.
* There will be complications, but they will short in nature.
* I will feel the love of my Savior and Heavenly Father and family and friends.
* Through the prayers of those I know and who know me, I will be healed.
Hooray. There's truth behind some of the optimism I've been feeling. Hooray for the power of the priesthood and our Savior's and Father's involvement with our sometimes seemingly insignificant lives on this Earth. Our lives are not insignificant to them!
And thank you for your prayers and kind words and concerns. You are going to help heal me!
Assuming Someone Else's Identity
I'm sitting at home, contemplating everything we heard yesterday at the Family Conference with Dr. Daanish Hoda in preparation for my allogeneic mini (nonmyeloblative) haploidentical stem cell (bone marrow) transplant.
Tomorrow morning (Friday, February 7), I'll have a central line placed on the left side of my upper chest and then start five consecutive days of chemo to kill off some of my white blood cells to make room for the new stem cells from my sister to grow.
And I can't help feeling like today is the last day of my old life and tomorrow is the first day of my new life. Technically, maybe, I can't truly say that until next Wednesday--the day before my sister's cells are actually transfused into me. However, tomorrow is the first day of the actual regimen, so that's how I'm feeling.
And I'm more optimistic about how effective this transplant is going to be against fighting my cancer and any future outbreaks of it than I was with the autologous transplant I had in August of 2011, when my own cancer-free cells were put back in me. Surprisingly, Dr. Hoda understands my logic and agrees with me.
But I also feel like this second transplant will change me forever. That's a good thing (no more cancer for a while), but it's also a bad thing (as graft-versus-host-disease kicks in and Tressie's cells war against my own). I feel like there will be some GVHD complications that will permanently be with me for the rest of my life.
Like so many things in life, this process has amazing parallels to the gospel of Jesus Christ.
Dr. Daanish said that we'll know the transplant was a success when, after some months or possibly a year have passed, they draw my blood and no longer see the properties of my own blood but see only the properties of Tressie's blood. When they look at my blood, they'll see only her blood. My immune system will be totally replaced by hers at that point, and that transformation will heal me of cancer.
Isn't that just what this life is about in spiritual terms? I'm trying to become like my Savior, Jesus Christ. I'm trying to let Him in me so deeply that when people look at me they see only Him--what He would do and what He would say if He were still on the Earth.
And only by accepting Him and becoming more like Him can He heal me--my sins and the pains and unjustices of this world.
Something to think about :-)
Tomorrow morning (Friday, February 7), I'll have a central line placed on the left side of my upper chest and then start five consecutive days of chemo to kill off some of my white blood cells to make room for the new stem cells from my sister to grow.
And I can't help feeling like today is the last day of my old life and tomorrow is the first day of my new life. Technically, maybe, I can't truly say that until next Wednesday--the day before my sister's cells are actually transfused into me. However, tomorrow is the first day of the actual regimen, so that's how I'm feeling.
And I'm more optimistic about how effective this transplant is going to be against fighting my cancer and any future outbreaks of it than I was with the autologous transplant I had in August of 2011, when my own cancer-free cells were put back in me. Surprisingly, Dr. Hoda understands my logic and agrees with me.
But I also feel like this second transplant will change me forever. That's a good thing (no more cancer for a while), but it's also a bad thing (as graft-versus-host-disease kicks in and Tressie's cells war against my own). I feel like there will be some GVHD complications that will permanently be with me for the rest of my life.
Like so many things in life, this process has amazing parallels to the gospel of Jesus Christ.
Dr. Daanish said that we'll know the transplant was a success when, after some months or possibly a year have passed, they draw my blood and no longer see the properties of my own blood but see only the properties of Tressie's blood. When they look at my blood, they'll see only her blood. My immune system will be totally replaced by hers at that point, and that transformation will heal me of cancer.
Isn't that just what this life is about in spiritual terms? I'm trying to become like my Savior, Jesus Christ. I'm trying to let Him in me so deeply that when people look at me they see only Him--what He would do and what He would say if He were still on the Earth.
And only by accepting Him and becoming more like Him can He heal me--my sins and the pains and unjustices of this world.
Something to think about :-)
Sunday, February 2, 2014
Bone Marrow Schedule
The new schedule for my allogeneic, haplo, stem cell, bone marrow transplant (BMT) is as follows:
*Friday, February 7
7 am: Have a central line placed by LDS Hospital's radiology department
11:30 am: Start Fludarabine and Cyclophosphamide chemo
*Saturday, February 8
10 am: More Fludar. and Cyclo. chemo
*Sunday, February 9
??? am: More Fludar. chemo
*Monday, February 10
11:30 am: More Fludar. chemo
*Tuesday, February 11
11:30 am: More Fludar. chemo
**Wednesday, February 12
9:00 am: Admit to LDS Hospital for total body irradiation and BMT
**Thursday, February 13
Receive my sister's stem cells and let them start the war between my Hodgkins-loving cells and her Hodgkins-fighting white blood cells
Sunday, February 16
Start high-dose chemo to kill my sister's T cells
Monday, February 17
More high-dose chemo
Tuesday, February 18
Start Tacrolimus and Mycophenolate to try and minimize any graft-versus-host-disease
~March, 8
Get discharged and start some period of being sequestered at home
Gee, aren't you jealous that your schedule isn't as exciting? LOL
*Usually patients are admitted for these days. However, because I've had so much chemo in my life and know what to expect, the BMT team is willing to let me try getting this regular dose chemo on an outpatient basis. If something feels wrong to me or I have any unforeseen complications, they'll then admit me.
**These are days that my sister is donating her stem cells through a dialysis-like process called aphoresis. Hopefully, I'll be allowed to visit her while she donates because she'll be in a room at the hospital that's considered part of the outpatient clinic at LDS Hospital on the 8th floor (which is the same floor where I'll be staying).
~This is my planned discharge date--3.5 weeks after being admitted. However, the BMT team told me to count on 4-5 weeks of hospitalization, which would stretch my discharge date until March 14. I know they told me to count on 4 weeks of hospitalization for the autologous BMT and I was out in exactly 3 weeks, so I'm hoping my 3.5 week plan works for their estimate of 4-5 weeks--especially because they're willing to let me try the first five days without being admitted.
*Friday, February 7
7 am: Have a central line placed by LDS Hospital's radiology department
11:30 am: Start Fludarabine and Cyclophosphamide chemo
*Saturday, February 8
10 am: More Fludar. and Cyclo. chemo
*Sunday, February 9
??? am: More Fludar. chemo
*Monday, February 10
11:30 am: More Fludar. chemo
*Tuesday, February 11
11:30 am: More Fludar. chemo
**Wednesday, February 12
9:00 am: Admit to LDS Hospital for total body irradiation and BMT
**Thursday, February 13
Receive my sister's stem cells and let them start the war between my Hodgkins-loving cells and her Hodgkins-fighting white blood cells
Sunday, February 16
Start high-dose chemo to kill my sister's T cells
Monday, February 17
More high-dose chemo
Tuesday, February 18
Start Tacrolimus and Mycophenolate to try and minimize any graft-versus-host-disease
~March, 8
Get discharged and start some period of being sequestered at home
Gee, aren't you jealous that your schedule isn't as exciting? LOL
*Usually patients are admitted for these days. However, because I've had so much chemo in my life and know what to expect, the BMT team is willing to let me try getting this regular dose chemo on an outpatient basis. If something feels wrong to me or I have any unforeseen complications, they'll then admit me.
**These are days that my sister is donating her stem cells through a dialysis-like process called aphoresis. Hopefully, I'll be allowed to visit her while she donates because she'll be in a room at the hospital that's considered part of the outpatient clinic at LDS Hospital on the 8th floor (which is the same floor where I'll be staying).
~This is my planned discharge date--3.5 weeks after being admitted. However, the BMT team told me to count on 4-5 weeks of hospitalization, which would stretch my discharge date until March 14. I know they told me to count on 4 weeks of hospitalization for the autologous BMT and I was out in exactly 3 weeks, so I'm hoping my 3.5 week plan works for their estimate of 4-5 weeks--especially because they're willing to let me try the first five days without being admitted.
Delays for Second Bone Marrow Transplant
I'm not sure what exactly happened, but I was supposed to have started chemo already, in preparation for my second bone marrow transplant (BMT)--this time an allogeneic haplo transplant.
I do know that my sister, Tabitha, who was going to be my donor said she hadn't been medically cleared to be my donor because she'd been to places in Mexico where there are malaria concerns.
So my sister, Tressie, stepped forward--even though she absolutely is terrified of all things medical, especially hospitals and needles. And I know the BMT team at LDS Hospital told Tressie that she'd be medically cleared, even if she had been to Mexico recently.
Like I said, not sure what happened with Tabitha; but I am grateful that Tressie is willing to be tortured by medical personnel on my behalf.
BUT this all puts a damper on my schedule. I think it's by divine design though.
I feel like things will change for the worse somehow in my life. I feel like the transplant will extend my life for at least a few years (I'm hoping for 7-10), but that there will be some complications from the war between my cells and my sister's that won't be pleasant.
I was just beginning to gear up mentally to start that war when it all had to be postponed while Tressie completed the vetting process, so now I'm just anxious to get it started.
Plus, I feel like, if the transplant doesn't happen within two months of my last chemo dose, the Hodgkins will be back. My last chemo dose was December 11th, so we have a tight window that's contributing to my anxiety.
However, we have a new tentative schedule, so we should be okay.
I do know that my sister, Tabitha, who was going to be my donor said she hadn't been medically cleared to be my donor because she'd been to places in Mexico where there are malaria concerns.
So my sister, Tressie, stepped forward--even though she absolutely is terrified of all things medical, especially hospitals and needles. And I know the BMT team at LDS Hospital told Tressie that she'd be medically cleared, even if she had been to Mexico recently.
Like I said, not sure what happened with Tabitha; but I am grateful that Tressie is willing to be tortured by medical personnel on my behalf.
BUT this all puts a damper on my schedule. I think it's by divine design though.
I feel like things will change for the worse somehow in my life. I feel like the transplant will extend my life for at least a few years (I'm hoping for 7-10), but that there will be some complications from the war between my cells and my sister's that won't be pleasant.
I was just beginning to gear up mentally to start that war when it all had to be postponed while Tressie completed the vetting process, so now I'm just anxious to get it started.
Plus, I feel like, if the transplant doesn't happen within two months of my last chemo dose, the Hodgkins will be back. My last chemo dose was December 11th, so we have a tight window that's contributing to my anxiety.
However, we have a new tentative schedule, so we should be okay.
Monday, December 30, 2013
No More Hodgkins For the Fifth Time
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.
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.
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, June 21, 2013
Doctor With Strange Sense of Humor
The only remarkable thing about my three-day stay in the hospital while recovering from the TAVR was one of the attending doctors that was following me.
I think his name was Jonathen?
Anyway, the morning after surgery he came to check on me. I think he was trying to be funny, but he didn't introduce himself or what his role in my care was and started with, "Why are you still here? Haven't you left yet?"
Huh?
"I just had my aortic valve replaced."
"I know. But the guy we did before you has already been discharged."
"And he had his aortic valve replaced?"
"Yep. Same as you."
"Through his ribs?"
"No. Through his right groin."
"Well, that's different. If you're going to compare apples to apples. It's a complete different surgery, and one that's much easier to recover from."
All I got in response was a shrug. Weird!
Then he says, "Well, you're not still on pain medicines, are you? We need to get you off those."
Really? I can tolerate pain pretty well, but I'm in quite a bit of pain--from the chest tubes and especially when I cough.
In general though, I try to figure out people's expectations and then do everything I can to exceed them. I'm a pleaser by nature, so I immediately start trying to figure out how to at least reduce the amount of pain medication I'm taking.
The next day when he comes to check on me, I'm prepared.
I announce, "Hey, I'm down to taking pain medications only every six hours."
He doesn't let me finish before he cuts me off with "Trish, you just had your aortic valve replaced; and we had to go through your ribs. I don't want you even thinking about reducing your pain mediation yet."
What? Now I'm really confused. When I mentioned how strange and confusing his conversations were to Sally, she says that he just has a really odd manner and not to worry about it too much because I definitely can't change him.
It turns out that open heart surgery is actually easier and less painful to heal from because there are hardly any nerves around your sternum, yet your ribs are wrapped with lots of nerves. Interesting.
I think his name was Jonathen?
Anyway, the morning after surgery he came to check on me. I think he was trying to be funny, but he didn't introduce himself or what his role in my care was and started with, "Why are you still here? Haven't you left yet?"
Huh?
"I just had my aortic valve replaced."
"I know. But the guy we did before you has already been discharged."
"And he had his aortic valve replaced?"
"Yep. Same as you."
"Through his ribs?"
"No. Through his right groin."
"Well, that's different. If you're going to compare apples to apples. It's a complete different surgery, and one that's much easier to recover from."
All I got in response was a shrug. Weird!
Then he says, "Well, you're not still on pain medicines, are you? We need to get you off those."
Really? I can tolerate pain pretty well, but I'm in quite a bit of pain--from the chest tubes and especially when I cough.
In general though, I try to figure out people's expectations and then do everything I can to exceed them. I'm a pleaser by nature, so I immediately start trying to figure out how to at least reduce the amount of pain medication I'm taking.
The next day when he comes to check on me, I'm prepared.
I announce, "Hey, I'm down to taking pain medications only every six hours."
He doesn't let me finish before he cuts me off with "Trish, you just had your aortic valve replaced; and we had to go through your ribs. I don't want you even thinking about reducing your pain mediation yet."
What? Now I'm really confused. When I mentioned how strange and confusing his conversations were to Sally, she says that he just has a really odd manner and not to worry about it too much because I definitely can't change him.
It turns out that open heart surgery is actually easier and less painful to heal from because there are hardly any nerves around your sternum, yet your ribs are wrapped with lots of nerves. Interesting.
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.
Saturday, June 8, 2013
Purple War Montage
Some of my dearest neighbors put a montage of pictures from the Purple War Fun Run and parade entry. How did they know that Rascal Flatts is one of my all-time favorite bands?
http://www.facebook.com/l/9AQF1X8kMAQGBRNCftS82iP5kxFZXLJJnybUut6eqUM0MZQ/www.youtube.com/watch?v=EGLHlPXCCAM
This morning was the Cedar Hills parade, so Dad, Travis, Braden, and I got to ride in a white, horse-drawn carriage that Shawn Warenski hired for us as part of the Purple War campaign and bake and craft sale.
It was fun.
We threw out two full bags of hard candy and small packages of Skittles, Nerds, Twizzlers, and other treats--over 13 pounds of candy, and it lasted only the first half of the parade. By the second half, we didn't have any more candy to throw out to the kids. Sad!
I'm exhausted from this entire week and sunburnt, and now get to teach the Relief Society lesson on temples tomorrow.
Time for a nap!
http://www.facebook.com/l/9AQF1X8kMAQGBRNCftS82iP5kxFZXLJJnybUut6eqUM0MZQ/www.youtube.com/watch?v=EGLHlPXCCAM
This morning was the Cedar Hills parade, so Dad, Travis, Braden, and I got to ride in a white, horse-drawn carriage that Shawn Warenski hired for us as part of the Purple War campaign and bake and craft sale.
It was fun.
We threw out two full bags of hard candy and small packages of Skittles, Nerds, Twizzlers, and other treats--over 13 pounds of candy, and it lasted only the first half of the parade. By the second half, we didn't have any more candy to throw out to the kids. Sad!
I'm exhausted from this entire week and sunburnt, and now get to teach the Relief Society lesson on temples tomorrow.
Time for a nap!
Friday, June 7, 2013
Escape to Kamas and Oak Crest
My brother's oldest daughter, Jessica, is staying with us on the weekends this summer.
She's a counselor at Oakcrest, an LDS Girl's Camp for Beehives in the Salt Lake valley. Caisa is one of her friends from BYU who's also a counselor at Oakcrest. Her family lives in Arizona, so Caisa is staying in Jordan's room, while Jessica gets the guest room.
Tonight Oakcrest is having Friends and Family Night, so we drove up to Kamas (about 55 minutes from Salt Lake) to visit the camp.
We got to visit the camp and also try out activities: obstacle course, zip line, and archery range.
I just sat in the lodge while Tangi, Dave, Braden, Bailey, and Travis tried the activities. (Who wants to haul oxygen around to all those places if I can't really participate?)
It was kind of fun, but you've got to ask Travis about how to "Scatter Sunshine all around you." It's a line from one of the skits the girl's performed for us that puts all of the camp rules into a little song number. The "scatter sunshine" line is the loudest and most obnoxious, so it's obviously Travis's favorite part of the entire night--NOT!
Hilarious!
She's a counselor at Oakcrest, an LDS Girl's Camp for Beehives in the Salt Lake valley. Caisa is one of her friends from BYU who's also a counselor at Oakcrest. Her family lives in Arizona, so Caisa is staying in Jordan's room, while Jessica gets the guest room.
Tonight Oakcrest is having Friends and Family Night, so we drove up to Kamas (about 55 minutes from Salt Lake) to visit the camp.
We got to visit the camp and also try out activities: obstacle course, zip line, and archery range.
I just sat in the lodge while Tangi, Dave, Braden, Bailey, and Travis tried the activities. (Who wants to haul oxygen around to all those places if I can't really participate?)
It was kind of fun, but you've got to ask Travis about how to "Scatter Sunshine all around you." It's a line from one of the skits the girl's performed for us that puts all of the camp rules into a little song number. The "scatter sunshine" line is the loudest and most obnoxious, so it's obviously Travis's favorite part of the entire night--NOT!
Hilarious!
Cedar Hills Fun Run and Second Daily Herald Article
Here's the second article in the Daily Herald about Thursday night's Fun Run:
http://www.heraldextra.com/news/local/community-raises-money-for-woman-with-disease/article_300e0285-cab6-51f4-9e47-555ea1de1ced.html
Thursday evening was the Cedar Hills Fun Run, and all proceeds were for me. Most people wore purple too.
I think that Ronnie Proffit said they raised about $1200 that night. Wow! And it's all being matched by an anonymous corporation.
http://www.heraldextra.com/news/local/community-raises-money-for-woman-with-disease/article_300e0285-cab6-51f4-9e47-555ea1de1ced.html
Thursday evening was the Cedar Hills Fun Run, and all proceeds were for me. Most people wore purple too.
I think that Ronnie Proffit said they raised about $1200 that night. Wow! And it's all being matched by an anonymous corporation.
Sunday, May 26, 2013
Article in The Daily Herald newspaper in Provo
Check out this link: http://www.heraldextra.com/news/local/cedar-hills-residents-declare-purple-war-for-neighbor/article_ad23cfdf-26cb-5ee3-a724-f1e412ff7e82.html
It's absolutely amazing that I'd ever be in the local paper!
It's absolutely amazing that I'd ever be in the local paper!
Wednesday, May 15, 2013
How Many Medical Personnel Does Radiation Take
How many different medical personnel does it take to get radiation treatments?
1. Laurie - receptionist to answer phone calls and schedule appointments.
2. Debbie - nurse practitioner(?) to do scans, make molds, and assist the doctors.
3. Dr. McAllister - radiation oncologist to review records and plan the treatment.
4. unnamed physicist - to help the doctor figure out how to shape the radiation beams so that only the exact areas that need radiation get it and nothing else is damaged in the process.
5. Dr. Blair - radiation oncologist to review treatment plan and ensure nothing gets missed.
6. DeAnn - nurse to get vitals and current status in preparation for weekly follow up appointments with one of the radiation oncologists to ensure everything is going well with the treatments.
7. Chad - radiation technician to position me exactly for each treatment and run the radiation machine.
8. Janelle - radiation technician to position me exactly for each treatment and run the radiation machine.
9. Steve - nurse practitioner to see me for follow up appointments after radiation is completed.
How many different medical personnel does it take to get radiation treatments?
9! That's all :-)
1. Laurie - receptionist to answer phone calls and schedule appointments.
2. Debbie - nurse practitioner(?) to do scans, make molds, and assist the doctors.
3. Dr. McAllister - radiation oncologist to review records and plan the treatment.
4. unnamed physicist - to help the doctor figure out how to shape the radiation beams so that only the exact areas that need radiation get it and nothing else is damaged in the process.
5. Dr. Blair - radiation oncologist to review treatment plan and ensure nothing gets missed.
6. DeAnn - nurse to get vitals and current status in preparation for weekly follow up appointments with one of the radiation oncologists to ensure everything is going well with the treatments.
7. Chad - radiation technician to position me exactly for each treatment and run the radiation machine.
8. Janelle - radiation technician to position me exactly for each treatment and run the radiation machine.
9. Steve - nurse practitioner to see me for follow up appointments after radiation is completed.
How many different medical personnel does it take to get radiation treatments?
9! That's all :-)
Thursday, April 18, 2013
Radiation Begins
After taking a few scans, making a foam mold of my lower half so I can lay in it and position my body in the exact same way every time, adding tiny black stickers to my body (because I beg not to be permanently tattooed), and a few follow up appointments with more scans, we're finally ready to begin radiation on Thursday, April 18.
Hooray! Initially, I was told that it would take at least 2-3 weeks before we began, but it's been only a week and we're starting. Hooray!
It will take 20 sessions, so I'm scheduled to finish on May 15.
Every day I drive to Provo, walk in the side door, wait in a separate back waiting room (where I never see anyone else) until one of the technicians comes for me, walk into the leaded radiation room, drop my pants (while they hold a small cloth in front of me for modesty), get positioned on the narrow table, wait for the 2-3 technicians to finalize all the tiny alignments with those stickers, watch the technicians leave and close the heavy leaded door behind them, wait approximately 11 seconds while the machine hums over me, count off another 30 seconds or so while the machine spins around my body so that it's now positioned under me, and count off a final 8 seconds for the last part of the radiation is delivered preciously where it needs to go.
Then it's a quick hop off the table, get fully dressed again, and I'm free to go again until it's time to repeat the process.
Tomorrow, same time, same place, every weekday until 20 treatments are finished.
It's not hard, difficult, or even that time consuming. The side effects are very minimal--just some redness that feels like a minor sunburn. I start applying Radiaguard (a lotion) about the fourth or fifth day, 2-3 times a day, and its works great.
It's the drive between Cedar Hills and Provo every weekday that quickly gets old. Oh well. If it prevents the Hodgkins from coming back, it's definitely worth it!
Hooray! Initially, I was told that it would take at least 2-3 weeks before we began, but it's been only a week and we're starting. Hooray!
It will take 20 sessions, so I'm scheduled to finish on May 15.
Every day I drive to Provo, walk in the side door, wait in a separate back waiting room (where I never see anyone else) until one of the technicians comes for me, walk into the leaded radiation room, drop my pants (while they hold a small cloth in front of me for modesty), get positioned on the narrow table, wait for the 2-3 technicians to finalize all the tiny alignments with those stickers, watch the technicians leave and close the heavy leaded door behind them, wait approximately 11 seconds while the machine hums over me, count off another 30 seconds or so while the machine spins around my body so that it's now positioned under me, and count off a final 8 seconds for the last part of the radiation is delivered preciously where it needs to go.
Then it's a quick hop off the table, get fully dressed again, and I'm free to go again until it's time to repeat the process.
Tomorrow, same time, same place, every weekday until 20 treatments are finished.
It's not hard, difficult, or even that time consuming. The side effects are very minimal--just some redness that feels like a minor sunburn. I start applying Radiaguard (a lotion) about the fourth or fifth day, 2-3 times a day, and its works great.
It's the drive between Cedar Hills and Provo every weekday that quickly gets old. Oh well. If it prevents the Hodgkins from coming back, it's definitely worth it!
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