Time to meet with Dr. Wendy for the results of the PET scan.
Dale has to work, so Miriam graciously agrees to accompany me.
I'm not sure what the results will show, so I prepare as if I need more chemo (darn that itchiness!) and pack my water bottle, two games we can play, and a book I can read if Miriam is tired of games.
Here we go!
After the preliminary check-in stuff (weight, review medications, BP, O2, heart rate, and temperature), I hear the familiar click-clacking of Dr. Wendy's heels leading to my exam room door.
And. . .
IT'S GREAT NEWS! No more cancer. For the fifth time in my life, I'm officially in remission.
A quick blood draw from my port and we're out of there.
I'm ecstatic! Time to party! When I tell Miriam that we need to celebrate, she suggests that we have a big party tomorrow night. No, wait, this is big enough (beating cancer five freaking times!) that we need to make it a country-wide thing. Miriam says, "No, a world-wide party."
So here goes. . .
THE WORLD is officially invited to celebrate that I, Trisha Mae (Turner) Howard am officially in remission from Hodgkins lymphoma for the fifth time in my life,
On Tuesday, December 31, 2013 in the evening hours,
By eating treats, playing games, and gathering with family and friends.
That doesn't seem big enough somehow. Heck!
Light off fireworks too. And gather in large groups if you're near metropolitan areas!
It's party time everyone :-)
There! That seems fitting now.
Purple Everywhere
Daily Herald picture
Monday, December 30, 2013
Sunday, December 29, 2013
Waiting Is the Hardest Part
PET scan was complete on Thursday (12/26).
Dr. Breyer called me personally with the results of the last PET scan on Friday night about 6:00 pm. So I waited, hoping to hear the results of this scan, but no phone call.
It's okay. The scan will either show less cancer than last time, or no cancer.
But dealing with the "What ifs" that go with each scenario are the hardest part!!!!
And, if I'm being honest, my back is almost incessantly itchy again, just like it has been for the previous three Hodgkins occurrences. (I don't remember it itching when I was 7.) The itchiness is what clued me in that the Hodgkins was back after the aortic valve replacement, so that's not a good sign. I guess it's possible that the scan could show more cancer than last time because it's spread or the Adcetris has stopped being effective,
I make it through to Sunday night okay and am able to sleep pretty well. However, Sunday I have to watch an entire movie before I'm finally able to sleep around midnight.
We'll know in the morning!
Dr. Breyer called me personally with the results of the last PET scan on Friday night about 6:00 pm. So I waited, hoping to hear the results of this scan, but no phone call.
It's okay. The scan will either show less cancer than last time, or no cancer.
But dealing with the "What ifs" that go with each scenario are the hardest part!!!!
And, if I'm being honest, my back is almost incessantly itchy again, just like it has been for the previous three Hodgkins occurrences. (I don't remember it itching when I was 7.) The itchiness is what clued me in that the Hodgkins was back after the aortic valve replacement, so that's not a good sign. I guess it's possible that the scan could show more cancer than last time because it's spread or the Adcetris has stopped being effective,
I make it through to Sunday night okay and am able to sleep pretty well. However, Sunday I have to watch an entire movie before I'm finally able to sleep around midnight.
We'll know in the morning!
Thursday, December 26, 2013
PET Scan Time
It's almost rude.
It's 8:15 am the day after Christmas; and, once again, I'm forced to focus in on Hodgkins lymphoma. This time it's because I need to be at UVRMC in Provo by 8:45 for a PET scan.
After four doses of Adcetris (brentuximab vedontin), it's time to see if that chemo has done it's job.
I hate how you have to register at a kiosk, by typing in your last name, first name, birth month and day, and the department you need. Then wait in a reception area to register.
So what was that registration at the kiosk? And what was that phone call I answered about three days ago to pre-register?
I have to answer questions over the phone to pre-register, register at a kiosk, and then wait to register again for the final time?
Someone needs to fix this system!
It's also interesting to me that IHC hospitals require a finger poke to check liver function before they'll let you absorb contrast into your body. (To whine for a moment, I hate the finger pokes. I'd rather you draw my blood than poke my finger; a needle stick hurts less than the puncture wound.)
Plus, lately, it's not just a simple poke. They really have to jab deep because they're filling three pipettes (or small tubes) with blood. I know they're also testing blood glucose levels, but diabetic meters are all boasting how little blood they require these days--less than a drop.
So why three pipettes? Why the deep stab? Why the 2-3 minute process to "milk" my finger and squeeze all the blood you possibly can from the end of my nerve-damaged finger?
Luckily, the first part of the process goes fairly smoothly: access the port, inject the radioactive sugar, dim the lights and have me recline in a chair and wait 70 minutes while occasionally drinking about 16 oz. of oral contrast.
As I'm resting, I'm trying to count how many PET scans I have thus far in my life: at least 4-5 in the portable trailer at American Fork Hospital, at least 2 at Huntsman, one at the hospital off 5300 South in Salt Lake, and now this one at UVRMC. At least 8 total, and I'm pretty sure I'm forgetting at least two. Whew!
From all of those PET scans, I'm getting really good at judging how much time has passed while I'm resting and waiting for any cancerous lymph nodes in my body to absorb the radioactive sugar. Try it. If you're forced to rest in a dim room and do absolutely nothing but sit and wait, can you judge when 60-70 minutes are up?
Time for the CT and PET scans. Nothing new there either. Lay down on my back on a narrow hard table with my head in a strange foam pillow, arms above my head, stay absolutely still as the machine does 2-3 quick passes for the CT scan without contrast, then continue as the machine starts at my knees and spins about five minute, then moves to the next position (for a total of five different positions) until about 30 minutes have passed, then inject the IV contrast (that makes your lower abdomen feel very warm--like you've wet yourself) and wait for another 1-2 quick passes of the CT scan with contrast.
Ta-duh! Unhook the contrast tubing, flush the port, de-access the port, and you're now free to leave the premises with no hint as to any results.
Isn't modern medicine fun? lol
It's 8:15 am the day after Christmas; and, once again, I'm forced to focus in on Hodgkins lymphoma. This time it's because I need to be at UVRMC in Provo by 8:45 for a PET scan.
After four doses of Adcetris (brentuximab vedontin), it's time to see if that chemo has done it's job.
I hate how you have to register at a kiosk, by typing in your last name, first name, birth month and day, and the department you need. Then wait in a reception area to register.
So what was that registration at the kiosk? And what was that phone call I answered about three days ago to pre-register?
I have to answer questions over the phone to pre-register, register at a kiosk, and then wait to register again for the final time?
Someone needs to fix this system!
It's also interesting to me that IHC hospitals require a finger poke to check liver function before they'll let you absorb contrast into your body. (To whine for a moment, I hate the finger pokes. I'd rather you draw my blood than poke my finger; a needle stick hurts less than the puncture wound.)
Plus, lately, it's not just a simple poke. They really have to jab deep because they're filling three pipettes (or small tubes) with blood. I know they're also testing blood glucose levels, but diabetic meters are all boasting how little blood they require these days--less than a drop.
So why three pipettes? Why the deep stab? Why the 2-3 minute process to "milk" my finger and squeeze all the blood you possibly can from the end of my nerve-damaged finger?
Luckily, the first part of the process goes fairly smoothly: access the port, inject the radioactive sugar, dim the lights and have me recline in a chair and wait 70 minutes while occasionally drinking about 16 oz. of oral contrast.
As I'm resting, I'm trying to count how many PET scans I have thus far in my life: at least 4-5 in the portable trailer at American Fork Hospital, at least 2 at Huntsman, one at the hospital off 5300 South in Salt Lake, and now this one at UVRMC. At least 8 total, and I'm pretty sure I'm forgetting at least two. Whew!
From all of those PET scans, I'm getting really good at judging how much time has passed while I'm resting and waiting for any cancerous lymph nodes in my body to absorb the radioactive sugar. Try it. If you're forced to rest in a dim room and do absolutely nothing but sit and wait, can you judge when 60-70 minutes are up?
Time for the CT and PET scans. Nothing new there either. Lay down on my back on a narrow hard table with my head in a strange foam pillow, arms above my head, stay absolutely still as the machine does 2-3 quick passes for the CT scan without contrast, then continue as the machine starts at my knees and spins about five minute, then moves to the next position (for a total of five different positions) until about 30 minutes have passed, then inject the IV contrast (that makes your lower abdomen feel very warm--like you've wet yourself) and wait for another 1-2 quick passes of the CT scan with contrast.
Ta-duh! Unhook the contrast tubing, flush the port, de-access the port, and you're now free to leave the premises with no hint as to any results.
Isn't modern medicine fun? lol
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.
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