Dear brothers, sisters friends and family:
I want you to know that my lovely bride has won her fight! She is now free of all pain, suffering and Hodgekins!!! She has been in the hospital receiving a bone marrow transplant to keep the Hodgekins at bay. Through prayers and fasting we knew that this was the right thing to do. The transplant went well. Even on Saturday all of the markers that they use to determine the success of the Grafting in were great. It was a success. However, last week she was getting sick and they found that Trisha has a Yeast Infection in her blood. They needed to remove her Purple Power Port and the central line that they were using to administer the medications. They then needed to raise IV's to replace them. She has spent the last week or so fighting this new infection. Saturday night she wasn't able to sleep much at all because of fluid stating to collect around her heart and lungs. They moved her down to ICU for extra help. Shortly after moving to the ICU they knew that there wasn't anything that they could do except to prolong.
Trisha and I have had many talks throughout our life together about what we would do. Trisha and I talked again and we knew what we were going to do. She was able to spend some time with most of her family and our kids. Her last message to them was "No Regrets".
I don't have the words to give a portion of the appreciation that I have for each of you. Trisha was the writer and probably would have a couple of words for me to choose from. What I do know is that I am grateful to each and everyone of you. Your prayers, thoughts and numerous acts of charity will always be cherished. Trish would want me to tell you thanks also, and to remind you that she is happy, cancer free finally, and she is probably running. She was strong and still thinking of you and what she could do from her hospital room to be of service.
Trisha would want me to tell you that she is grateful for all of the experiences that she has had in her life. She cherishes each friendship that she has and how important you are to her. She received strength and encouragement from you and she feels better knowing she can call you friend. Her testimony of a Loving Heavenly Father and her Savior is stronger today than yesterday. She knows that Our Savior Lives and that we can return to live with our Father again with our families.
Her services will be on Saturday, March 22. at Cedar Hills West Stake Building at 11:00am with visitations before from 9:30 to 10:30 and also Friday evening from 6:00 to 8:00pm at Warenski Funeral Home in American Fork.
Thank you for your love, prayers, support and service that you have been to my bride and my family. I pray that you will also feel the Love of our Father in Heaven and in Our Savior Jesus Christ as you think of Trisha or when you see her favorite color Purple. I know that I will always remember and cherish my life with Trish, and I will strive to be the kind of person that she tells people that I am. Trisha I LOVE you, and I miss you.
SHMILY
Purple Everywhere
Daily Herald picture
Tuesday, March 18, 2014
Monday, February 10, 2014
Sweet Letter
I received this message from someone I used to teach in Sunday School in my last ward (over ten years ago). I think I taught the youth in Sunday School the entire time I was in that ward (about seven years).
Hello Trisha!
I've been meaning to write you for some time now, but for one reason or another I seem to have kept putting it off.
First of all, I would like to truly thank you for your wonderful example. We all go through trials in our lives. Some of us lose faith and ask, why me?. However, others face their challenges head on with courage, never losing faith in our Heavenly Father and Jesus Christ. You seem to me to be the latter. Two words come to my mind that describe how you seem to have faced the myriad of trials you have been called to bear: faithful and valiant.
Interestingly enough, those words also describe some of the key characteristics you instilled in me many years ago as my sunday school teacher. Although I have not been perfect, I have always remembered Trish Turner standing in front of a curious, querulous, know-it-all class and teaching us to look unto Christ in every thought, and to be faithful and valiant in all that we did. Teaching such a rowdy group of young boys may not have been your cup of tea, but I assure you that it meant the world to me. It is a lesson that I tried to teach as a missionary; it is also a lesson that my wife and I now hope to instill in our children. Thank you for that.
Also, it has been an almost daily inspiration to me as I have read some of your posts to see that you still continue to live what you taught us years ago. In my opinion, that is the definition of a true teacher. Again, thank you.
I want you to know that you are in our thoughts and prayers. Kourtney and I wish you the very best and hope that you and Bro. Howard are able to keep on keepin' on.
Warmest regards,
Matt
I'm so glad that I can help in spreading the message of the gospel somehow! It means the world to me that he remembers some of the things that I tried to live and instill. I can keep on keeping on if it helps or makes a difference to someone else.
Hello Trisha!
I've been meaning to write you for some time now, but for one reason or another I seem to have kept putting it off.
First of all, I would like to truly thank you for your wonderful example. We all go through trials in our lives. Some of us lose faith and ask, why me?. However, others face their challenges head on with courage, never losing faith in our Heavenly Father and Jesus Christ. You seem to me to be the latter. Two words come to my mind that describe how you seem to have faced the myriad of trials you have been called to bear: faithful and valiant.
Interestingly enough, those words also describe some of the key characteristics you instilled in me many years ago as my sunday school teacher. Although I have not been perfect, I have always remembered Trish Turner standing in front of a curious, querulous, know-it-all class and teaching us to look unto Christ in every thought, and to be faithful and valiant in all that we did. Teaching such a rowdy group of young boys may not have been your cup of tea, but I assure you that it meant the world to me. It is a lesson that I tried to teach as a missionary; it is also a lesson that my wife and I now hope to instill in our children. Thank you for that.
Also, it has been an almost daily inspiration to me as I have read some of your posts to see that you still continue to live what you taught us years ago. In my opinion, that is the definition of a true teacher. Again, thank you.
I want you to know that you are in our thoughts and prayers. Kourtney and I wish you the very best and hope that you and Bro. Howard are able to keep on keepin' on.
Warmest regards,
Matt
I'm so glad that I can help in spreading the message of the gospel somehow! It means the world to me that he remembers some of the things that I tried to live and instill. I can keep on keeping on if it helps or makes a difference to someone else.
Saturday, February 8, 2014
I Told You So
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!
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!
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
Wednesday, December 25, 2013
Kind Words From Friends at Christmas
I was cleaning out our master closet to give Dale some more room (sort of a early, service Christmas present) when I found a hand painted purple gift box that Miriam gave me a few years ago for Christmas. Inside were slips of red and green paper that friends had written on. Reading their comments again definitely brought the Christmas spirit and water-filled eyes into my morning.
Amy - I have a very special place in my heart for you Trish. I am so glad that I had the opportunity to teach Primary with you and to get to know what a special person you are. I have heard about your struggles as a child and I am so amazed how you have overcome them and have such a positive attitude and always a smile on your face. I remember when you told me you had cancer. I prayed for you that you would be OK. I watched you battle with such grace and dignity. I also watched you battle for children that weren't even yours. How you took them in and loved them just as you would your own flesh and blood. It takes a great person to do such a thing. You are a great example to me. I am blessed to know you.
Marilyn - I'm glad to come early each Sunday because you come early too and play and the organ and I'm so happy that you do that. Thanks for the beautiful music.
Stacy - I feel truly blessed to have you and your family as part of our ward family. As I have watched you go through and endure the trials of this life I have always noticed the smile on your face. Knowing these times have been tough I admire your resilience and your hope and faith. You are a special sister in my ward family to me and I look up to you. I have watched your family grow and change and you are to be commended for your love and patience with them. I wish you the best Christmas yet, and many more wonderful ones to come.
Guzzman - We all love you playing the organ for us. I ask for help for you for all of your endeavors. May you have a good year.
Cathy - Trish Howard is such an amazing woman! She is such a great example of strength and enduring trials with a positive attitude! Her countenance shines with a strong testimony! She is always willing to help others and magnifies her callings. She is so talented and willing to share her talents to benefit others. I truly admire her generous spirit and strength. She is a great example of what she believes which then strengthens all those around her.
Sonya - Knowing both the physical and emotional energy it takes to practice and perform the organ, I am both amazed and grateful each week that you come share your talents with us.
Martha - You are such an inspiration. Your example and endurance have amazed me. I love to see your smiling face--always, no matter what you are going through, you always have a cheerful word. You truly are a "master of many trades" and a special daughter of God. Thank you for being my hero!
Angie - I love you!
Jen - Thank you for being a wonderful visiting teacher. I've absolutely loved having you in the "circle of trust." You have an amazing way of putting me at ease so that I can be comfortable in sharing tough stuff with you. Thank you for being a listening ear and a smiling support. I know that you've dealt with your own slew of issues. Thank you for being a gracious example of how to deal with problems. Not only that, when you've been down, thank you for sharing that you're feeling that way. I think sometimes we don't want others to know that we're hurting and you have shown that you still hurt and need the love and support. Bravo to you, my friend, for being real. You're the best. I love you.
Katie - I want to let you know how much your kindness means to me. You are the greatest example of sincere and unconditional love. When you came to teach Adam those math games, you not only blew us away with your creativity, you touched our hearts with your deep love. I will never forget the day your brought the wheat-free treat to Ellie around Christmas. You made her feel so special, and I was so amazed at your thoughtfulness. You have a very special place in our hearts. Not that I would want to wish extra work on you, but I always say to John, "I wonder when they will call Trisha Howard as Primary President." You are the perfect example of Christ-like love, and the kids are so lucky now to have you as the music leader. My kids just love you. So do I! With love and best wishes.
Cindy - Thank you for being my friend. I have come to love you and your family. You are such an example to me. I remember when you very first moved into our ward. I used to listen to your comments in Relief Society, and I knew that you had a solid testimony of the Gospel and the Savior. I remember thinking to myself how strong you were. I had no idea then that your example of strength later would just blow that one right out of the water. You have had quite a year. I've watched you deal with trial after trial with grace and optimism. It has been such a blessing to me to learn from you. I think that I am a better person for knowing you. . .in, fact, I know that I am. You also understand the wonderful and also difficult aspects of step-families situations, as do we at our house. I always tell Katie that Ted may not be her dad, but he is her parent. Stepparents do a lot of work in parenting, and I've been so impressed with your kind words about the kids in your home. I've also watched your amazing work not only with these kids, but with all of the children in our ward. You are an amazing music leader. Primary is so lucky to have you! Mostly, I've just enjoyed our friendship. I love you!!
Nora - You have a beautiful spirit and a very strong testimony of the Gospel.
Janice - I haven't had the opportunity to get to know you as I would have liked, but I have been so touched by your quiet spirit of strength and the warmth of your heart. I am grateful I had had the opportunity to be in your presence and witness such grace in the midst of such trials. You are a such a beautiful example.
Kamille - I will always remember and be grateful for the way you reached out to Matt and I when we moved in to the ward. You will never know how much it meant to us. We looked for a familiar face and found it in you. Thank you for your kindness, love, spirit, and example. I am grateful for your friendship and all you do for those around you. You are great!
Jennifer - It's so wonderful for me to be able to write a thought or two about you, Trish. (I think Miriam is wonderful to do this!) If there were one word to describe you, it would have to be "sunshine." I know that sounds juvenile, but if everyone could have the sunny attitude you have, there would be no gloom in the world. You truly epitomize Joseph B. Wirthlin's counsel, come what may and love it." You have a huge capacity for love and the personality of a true friend. Thank you for your example and Merry Christmas 2009!
Cami - The mountains you have been called to climb in the time that I have known you have been unthinkable for most. You have endured well. The gracefulness, faithfulness, and faith in which you have endured have been an example to us all. You have left a strong witness to many but especially for your family. The children have watched and have "learned wisdom in their youth" through your example. I have relished teaching Jordan in Sunday School. Your name and your example came up many times in our lessons. The hymns mean so much more to me when I think of the strength they give to you especially during your cancer treatments. Thank you, Trish, for your beauty.
Carolyn - I have really enjoyed getting to know you. You have been an amazing example to me of facing trials with faith and smiling through adversity.
Janet - You're an amazing lady! I have grown to love her more than she will ever know. She has touched my life in so many ways. She has played an important role in my son's life also. Trevor, who was born with many disabilities and challenges, was so blessed to have her for his Primary teacher. It was because of her class that he really liked going to church (and he hated it before she taught him). She made the lessons interesting and fun, and took a special interest in Trevor, which he really needed at that time. Trevor knew that she loved him. He never doubted that and that comforted him when there was so much chaos going on inside of his little head. Then she had the privilege of teaching Caleb, my other son. Caleb adored Trish. He was always so excited to see her, not only at church, but he loved to say "hello" to her on our back porch when he would see her come out of her house. Both of my sons have been blessed to have her teach them and love them. Now they have the privilege of being taught music by her in Primary, and they really listen to her. She makes her stories and lessons easy for them to follow and understand. I have grown to love Trish for the great example she has been in my life. She is upbeat, no matter how she feels, and carries a special spirit of "hope" around her when you are with her. There is no doubt in my mind she loves the Savior! She is fun, funny, and has the funniest laugh. She is sensitive to the spirit when she visit teaches, and always prays about how she can serve the sisters she teaches. She is one of my heroes, and I love her. It has been an awesome privilege to be her neighbor, visiting teaching companion, and friend. I love you, Trish!!!! You're the Best!!!!!!
Ronnie - I just wanted to tell you how much I love and appreciate you. I am so grateful to you for your love and support. Your strength and examples helped me so much through my crazy unknown sickness. Thank you so much for going out of your way when you were not feeling fabulous to comfort me and come to the scary doctors. I just love you! Merry Christmas.
Amy - What a wonderful opportunity to tell you how you have touched my life. I have loved getting to know you over the past two years. You have been an example to me of faith and strength. I always love hearing your beautiful singing voice - it really is a gift to you from our Heavenly Father. I wish you a very Merry Christmas with a wish of the best New Year to come!
Jo - We have sure loved your energy and smile in Primary. My kids have come home several times saying how much fun they had in singing time. Thanks for all the energy you put in to make it a good experience for the kids. Thanks for all you do. You are great.
Forgive me if I've misplaced a few slips of paper over the years, but I'm very touched as I re-read and enter these kind words.
Amy - I have a very special place in my heart for you Trish. I am so glad that I had the opportunity to teach Primary with you and to get to know what a special person you are. I have heard about your struggles as a child and I am so amazed how you have overcome them and have such a positive attitude and always a smile on your face. I remember when you told me you had cancer. I prayed for you that you would be OK. I watched you battle with such grace and dignity. I also watched you battle for children that weren't even yours. How you took them in and loved them just as you would your own flesh and blood. It takes a great person to do such a thing. You are a great example to me. I am blessed to know you.
Marilyn - I'm glad to come early each Sunday because you come early too and play and the organ and I'm so happy that you do that. Thanks for the beautiful music.
Stacy - I feel truly blessed to have you and your family as part of our ward family. As I have watched you go through and endure the trials of this life I have always noticed the smile on your face. Knowing these times have been tough I admire your resilience and your hope and faith. You are a special sister in my ward family to me and I look up to you. I have watched your family grow and change and you are to be commended for your love and patience with them. I wish you the best Christmas yet, and many more wonderful ones to come.
Guzzman - We all love you playing the organ for us. I ask for help for you for all of your endeavors. May you have a good year.
Cathy - Trish Howard is such an amazing woman! She is such a great example of strength and enduring trials with a positive attitude! Her countenance shines with a strong testimony! She is always willing to help others and magnifies her callings. She is so talented and willing to share her talents to benefit others. I truly admire her generous spirit and strength. She is a great example of what she believes which then strengthens all those around her.
Sonya - Knowing both the physical and emotional energy it takes to practice and perform the organ, I am both amazed and grateful each week that you come share your talents with us.
Martha - You are such an inspiration. Your example and endurance have amazed me. I love to see your smiling face--always, no matter what you are going through, you always have a cheerful word. You truly are a "master of many trades" and a special daughter of God. Thank you for being my hero!
Angie - I love you!
Jen - Thank you for being a wonderful visiting teacher. I've absolutely loved having you in the "circle of trust." You have an amazing way of putting me at ease so that I can be comfortable in sharing tough stuff with you. Thank you for being a listening ear and a smiling support. I know that you've dealt with your own slew of issues. Thank you for being a gracious example of how to deal with problems. Not only that, when you've been down, thank you for sharing that you're feeling that way. I think sometimes we don't want others to know that we're hurting and you have shown that you still hurt and need the love and support. Bravo to you, my friend, for being real. You're the best. I love you.
Katie - I want to let you know how much your kindness means to me. You are the greatest example of sincere and unconditional love. When you came to teach Adam those math games, you not only blew us away with your creativity, you touched our hearts with your deep love. I will never forget the day your brought the wheat-free treat to Ellie around Christmas. You made her feel so special, and I was so amazed at your thoughtfulness. You have a very special place in our hearts. Not that I would want to wish extra work on you, but I always say to John, "I wonder when they will call Trisha Howard as Primary President." You are the perfect example of Christ-like love, and the kids are so lucky now to have you as the music leader. My kids just love you. So do I! With love and best wishes.
Cindy - Thank you for being my friend. I have come to love you and your family. You are such an example to me. I remember when you very first moved into our ward. I used to listen to your comments in Relief Society, and I knew that you had a solid testimony of the Gospel and the Savior. I remember thinking to myself how strong you were. I had no idea then that your example of strength later would just blow that one right out of the water. You have had quite a year. I've watched you deal with trial after trial with grace and optimism. It has been such a blessing to me to learn from you. I think that I am a better person for knowing you. . .in, fact, I know that I am. You also understand the wonderful and also difficult aspects of step-families situations, as do we at our house. I always tell Katie that Ted may not be her dad, but he is her parent. Stepparents do a lot of work in parenting, and I've been so impressed with your kind words about the kids in your home. I've also watched your amazing work not only with these kids, but with all of the children in our ward. You are an amazing music leader. Primary is so lucky to have you! Mostly, I've just enjoyed our friendship. I love you!!
Nora - You have a beautiful spirit and a very strong testimony of the Gospel.
Janice - I haven't had the opportunity to get to know you as I would have liked, but I have been so touched by your quiet spirit of strength and the warmth of your heart. I am grateful I had had the opportunity to be in your presence and witness such grace in the midst of such trials. You are a such a beautiful example.
Kamille - I will always remember and be grateful for the way you reached out to Matt and I when we moved in to the ward. You will never know how much it meant to us. We looked for a familiar face and found it in you. Thank you for your kindness, love, spirit, and example. I am grateful for your friendship and all you do for those around you. You are great!
Jennifer - It's so wonderful for me to be able to write a thought or two about you, Trish. (I think Miriam is wonderful to do this!) If there were one word to describe you, it would have to be "sunshine." I know that sounds juvenile, but if everyone could have the sunny attitude you have, there would be no gloom in the world. You truly epitomize Joseph B. Wirthlin's counsel, come what may and love it." You have a huge capacity for love and the personality of a true friend. Thank you for your example and Merry Christmas 2009!
Cami - The mountains you have been called to climb in the time that I have known you have been unthinkable for most. You have endured well. The gracefulness, faithfulness, and faith in which you have endured have been an example to us all. You have left a strong witness to many but especially for your family. The children have watched and have "learned wisdom in their youth" through your example. I have relished teaching Jordan in Sunday School. Your name and your example came up many times in our lessons. The hymns mean so much more to me when I think of the strength they give to you especially during your cancer treatments. Thank you, Trish, for your beauty.
Carolyn - I have really enjoyed getting to know you. You have been an amazing example to me of facing trials with faith and smiling through adversity.
Janet - You're an amazing lady! I have grown to love her more than she will ever know. She has touched my life in so many ways. She has played an important role in my son's life also. Trevor, who was born with many disabilities and challenges, was so blessed to have her for his Primary teacher. It was because of her class that he really liked going to church (and he hated it before she taught him). She made the lessons interesting and fun, and took a special interest in Trevor, which he really needed at that time. Trevor knew that she loved him. He never doubted that and that comforted him when there was so much chaos going on inside of his little head. Then she had the privilege of teaching Caleb, my other son. Caleb adored Trish. He was always so excited to see her, not only at church, but he loved to say "hello" to her on our back porch when he would see her come out of her house. Both of my sons have been blessed to have her teach them and love them. Now they have the privilege of being taught music by her in Primary, and they really listen to her. She makes her stories and lessons easy for them to follow and understand. I have grown to love Trish for the great example she has been in my life. She is upbeat, no matter how she feels, and carries a special spirit of "hope" around her when you are with her. There is no doubt in my mind she loves the Savior! She is fun, funny, and has the funniest laugh. She is sensitive to the spirit when she visit teaches, and always prays about how she can serve the sisters she teaches. She is one of my heroes, and I love her. It has been an awesome privilege to be her neighbor, visiting teaching companion, and friend. I love you, Trish!!!! You're the Best!!!!!!
Ronnie - I just wanted to tell you how much I love and appreciate you. I am so grateful to you for your love and support. Your strength and examples helped me so much through my crazy unknown sickness. Thank you so much for going out of your way when you were not feeling fabulous to comfort me and come to the scary doctors. I just love you! Merry Christmas.
Amy - What a wonderful opportunity to tell you how you have touched my life. I have loved getting to know you over the past two years. You have been an example to me of faith and strength. I always love hearing your beautiful singing voice - it really is a gift to you from our Heavenly Father. I wish you a very Merry Christmas with a wish of the best New Year to come!
Jo - We have sure loved your energy and smile in Primary. My kids have come home several times saying how much fun they had in singing time. Thanks for all the energy you put in to make it a good experience for the kids. Thanks for all you do. You are great.
Forgive me if I've misplaced a few slips of paper over the years, but I'm very touched as I re-read and enter these kind words.
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.
Wednesday, June 26, 2013
Cardiac Rehab
A week after surgery, I'm feeling pretty well and am cleared to start cardiac rehabilitation (rehab).
What the heck?
It's exercising at low intensities, while being carefully monitored, in a hospital setting, so they can make sure my new heart valve is behaving.
So I start about 10 weeks of walking on a treadmill and riding a recumbent bike while having my BP, heart rate, and O2 levels checked regularly, and while being hooked up to a heart monitor.
Because our insurance is Blue Cross/Blue Shield, I get to drive to Timpanogos Regional Hospital and attend rehab there.
We start really slow at 7 minutes of walking and 7 minutes of biking at really low speeds.
The goal is to build up to about 30 minutes of each, with gradually increasing speeds and intensities.
Penny, the RN assigned to rehab, is great to work with--thankfully. Otherwise, I'm not sure how dedicated I'd be to this whole routine. And her schedule is pretty flexible--anytime between 9 a.m. and about 3:30 p.m. works.
But, when am I supposed to be able to work? All of these follow up appointments are killing my available hours.
With about three weeks left, our insurance changes, so I have to switch to doing cardiac rehab at UVRMC in Provo. Yeah, that's not much fun. Plus, their protocols are so different.
At Timp, there were at most three other patients. Usually, it was just one other patient besides me, using the 2 treadmills and 2 recumbent bicycles.
At UVRMC, there are about 30 other patients in a huge room, with about 15 treadmills, 5 recumbent bikes, and some different equipment I've never seen before. Plus, they have very specific protocols about the two-hour time window they run rehab, wearing name tags, signing in, doing warm ups, waiting for someone to help you before moving to the next part of your routine.
It's a giant pain--not to mention the even longer drive. Now I have to pass American Fork Hospital and Timpanogos Regional Hospital before getting to UVRMC.
They tell me that their protocol is to get people to tolerate 60 minutes of activity. I'm already there and at a higher intensity than any other patients, so they're advancing to Phase 3 of rehab.
If they think I'm good enough, I decide I'm good enough too. I don't show up for my scheduled Phase 3 appointment, and no one calls to follow up, so I drop out and don't go back.
What the heck?
It's exercising at low intensities, while being carefully monitored, in a hospital setting, so they can make sure my new heart valve is behaving.
So I start about 10 weeks of walking on a treadmill and riding a recumbent bike while having my BP, heart rate, and O2 levels checked regularly, and while being hooked up to a heart monitor.
Because our insurance is Blue Cross/Blue Shield, I get to drive to Timpanogos Regional Hospital and attend rehab there.
We start really slow at 7 minutes of walking and 7 minutes of biking at really low speeds.
The goal is to build up to about 30 minutes of each, with gradually increasing speeds and intensities.
Penny, the RN assigned to rehab, is great to work with--thankfully. Otherwise, I'm not sure how dedicated I'd be to this whole routine. And her schedule is pretty flexible--anytime between 9 a.m. and about 3:30 p.m. works.
But, when am I supposed to be able to work? All of these follow up appointments are killing my available hours.
With about three weeks left, our insurance changes, so I have to switch to doing cardiac rehab at UVRMC in Provo. Yeah, that's not much fun. Plus, their protocols are so different.
At Timp, there were at most three other patients. Usually, it was just one other patient besides me, using the 2 treadmills and 2 recumbent bicycles.
At UVRMC, there are about 30 other patients in a huge room, with about 15 treadmills, 5 recumbent bikes, and some different equipment I've never seen before. Plus, they have very specific protocols about the two-hour time window they run rehab, wearing name tags, signing in, doing warm ups, waiting for someone to help you before moving to the next part of your routine.
It's a giant pain--not to mention the even longer drive. Now I have to pass American Fork Hospital and Timpanogos Regional Hospital before getting to UVRMC.
They tell me that their protocol is to get people to tolerate 60 minutes of activity. I'm already there and at a higher intensity than any other patients, so they're advancing to Phase 3 of rehab.
If they think I'm good enough, I decide I'm good enough too. I don't show up for my scheduled Phase 3 appointment, and no one calls to follow up, so I drop out and don't go back.
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!
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