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.
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!
Cedar Hills Fun Run and Second Daily Herald Article
Here's the second article in the Daily Herald about Thursday night's Fun Run:
http://www.heraldextra.com/news/local/community-raises-money-for-woman-with-disease/article_300e0285-cab6-51f4-9e47-555ea1de1ced.html
Thursday evening was the Cedar Hills Fun Run, and all proceeds were for me. Most people wore purple too.
I think that Ronnie Proffit said they raised about $1200 that night. Wow! And it's all being matched by an anonymous corporation.
http://www.heraldextra.com/news/local/community-raises-money-for-woman-with-disease/article_300e0285-cab6-51f4-9e47-555ea1de1ced.html
Thursday evening was the Cedar Hills Fun Run, and all proceeds were for me. Most people wore purple too.
I think that Ronnie Proffit said they raised about $1200 that night. Wow! And it's all being matched by an anonymous corporation.
Thursday, June 6, 2013
The Perfect Storm - Continued
So after the whole debacle of technicians that can't even measure my height correctly (and the life-threatening mistake of not flushing my port), I decide I'm finished with St. Mark's Hospital.
I don't think there's anyway someone could convince me to have my aortic valve replaced at this hospital.
I'm supposed to have a transesophageal echocardiogram (TEE) performed tomorrow at St. Mark's, but while I'm still in the lobby of St. Mark's, after the PFTs, I call Sally and ask her to schedule all remaining tests at the UofU Hospital.
I'm finished with St. Mark's. I just cannot trust that my life is in good hands here.
I don't think there's anyway someone could convince me to have my aortic valve replaced at this hospital.
I'm supposed to have a transesophageal echocardiogram (TEE) performed tomorrow at St. Mark's, but while I'm still in the lobby of St. Mark's, after the PFTs, I call Sally and ask her to schedule all remaining tests at the UofU Hospital.
I'm finished with St. Mark's. I just cannot trust that my life is in good hands here.
Wednesday, June 5, 2013
The Perfect Storm
It's like God reached down his hand from heaven and said, "Thou shalt not go here." Yeah, it was that bad. I've never had such terrible customer service in my life, and this was from a hospital.
I'm not saying that St. Mark's is horrible all the way around. I'm saying that my brief encounter with them was a combination of terrible experiences.
Experience 1 - Switched Appointments
It kind of started when we weren't told before we arrived that we couldn't meet with Dr. Kawande and were switched to Dr. Schorlemmer instead. It was okay. I would have made the same choice not to wait an additional 3 weeks to see Dr. Kawande, but I would have liked to make that choice before driving the 45 minutes to get to the appointment. The office staff knew the day before when they made the switch; why didn't they inform me?
Experience 2 - Registration Fiascos
So I take my orders from Dr. Schorlemmer's office over to the registration desk at the hospital. I'm standing at the desk about 8 minutes while the twenty-something girl looks over my paperwork and keeps checking it against her computer. Finally, she involves the other woman sitting at the registration desk. She too examines the paperwork and checks the computer. After involving one more person from the back, they pronounce that all the paperwork seems to be in order.
"Please take all of this paperwork and proceed through the next door on your right."
Really? That's all it took to get registered. Cool. Now on to radiation, I guess. Whoops! Not so fast.
The next door is labeled "Registration." So what was that desk I was just standing at for 8 minutes? And why is it labeled Registration also?
I take a seat in a very full room. In fact, it's so full, there are no chairs left. So I sit at the only exposed desk in the room and wait. And wait. And wait.
There are about six desks that are sectioned off and numbered. The process involves waiting for someone at one of the desks to call your name so that you can then register. After waiting about 15 minutes and not seeing much turnover in the amount of people waiting, I start up a conversation with some of the people that are obviously frustrated from all of the waiting. "How long have you been here? How many people have been registered in that time?"
We eventually figure out that there are only two people or two desks that are available for registration. And they are both really slow at the process.
After waiting about 30 minutes, they open up another registration desk and I get called. Yahoo!
The lady who is helping me doesn't seem to know her job, however. After staring at my paperwork and her computer for a long time (about another 8 minutes), she suddenly gets up and leaves without saying anything to me.
Am I done? Am I just supposed to wait? Where did she go?
She's gone at least 4 minutes, when I notice another employee walking by and call out to her. "Ma'am, do you know you was helping me at this desk? She got up and left about five minutes ago, but I don't know where she went or what she's doing or if I'm finished or not."
She tells me her name was Jessica and she'll go look for her and figure out what's going on.
Another 1-2 minutes and Jessica comes back in huff. Apparently, that was her manager that I spoke to, and Jessica is not happy about being called out for just abadoning me at her registration station without any communication.
"Your paperwork isn't right. You're missing orders, so I'm going to have to fix it for you." She self-righteously proclaims.
"Interesting, because I stood at the front registration counter for 8 minutes while 3 different clerks reviewed my paperwork and finally pronounced it complete." I offer.
"Well. It's not. I have to call your doctor now and get it fixed."
Whatever! At this point, I've been at registration for about an hour, and my appointment is now overdue by at least 30 minutes.
"My paperwork says I'm supposed to have started a test about 45 minutes ago. Is there anything we can do to hurry this process along? At this rate, I'm going to be late for my second test, which is scheduled in another 15 minutes."
"Well, they should have told you to come early to register first."
" I did. I deliberately came 15 minutes early so that everything would go smoothly, but I've been waiting at registration now for an hour and am now late for my test. Is there any way you can call them and let them know that I was here on time and it's the registration department that's running behind?"
"No ma'am. But I just need to fix these orders and then print your stickers. You have another appointment today?"
"Yes. That's what those orders that you keep looking at say. You don't show in the computer that I have another test scheduled at 2:30?"
"Oh. Yes I do. You'll have to come back here after your first test to register for your second test."
"What? You can't register me for both if I'm sitting here now and they're scheduled one after the other?"
"No. And you'll have to have your ID and insurance information with you."
"Okay. Let's call over your supervisor again because surely there's something we could do differently to expedite this entire process."
At that, she begins to back down a little bit.
"Well, I suppose I could print your stickers for both procedures at the same time."
"Stickers? What stickers?"
"Each procedure needs stickers so they can label your results."
"Okay. So print me 10 stickers instead of 5 and please let me be on my way."
"It's not that simple, ma'am."
Actually, I'm sure it is. I've never been treated like this at any other hospital (and I've been to a bunch of different ones). Something is seriously broken here.
Finally, after another 5-10 minutes, she hands me some forms and tells me to wait just a moment while she prints off the stickers.
Another 2 minutes goes by while she prints off two entire sheets of about 30 stickers each. Really?
Then she announces, as if she's making the biggest sacrifice ever to assist me, "I'll personally bring the stickers for your second procedure down to radiology myself when they print off, so that you're not any later for your first procedure."
"How many stickers do they need? You've just handed me two entire sheets of about 60 stickers total." My bewilderment is written all over my face.
Again, in a big huff, she states, "And they'll need every single one of them for your first procedure."
If they were doing a bunch of biopsies, maybe. But they don't need 60 stickers for a CT. Whatever. I'm through trying to reason with Jessica. I'm sorry for the next patient who has to deal with her because she obviously doesn't know her job or have any idea what customer service is supposed to be like!
I'm directed down a long hallway into the radiation reception area. When I get there, I notice a desk. However, there's no signs at the desk and no one's sitting there, so I take a seat. After about five minutes of waiting and reading a magazine, I look up to find someone now sitting at the desk and people lined up in front of it. I watch them for a few moments, and then call out "Am I supposed to register with you also?" Like my registration nightmares could get any worse at this point!
It turns out that she needs me to register also, so I haul everything up to her desk as well, including my 60 stickers.
I'm so late for my first appointment that they're going to switch the two tests and do the ultrasound of my caratid arteries first and the CT second. Whatever. That's fine with me. Like I chose to wait in registration for an hour.
After a very short two minute wait, the ultrasound technician comes and calls my name.
Whew! Finally, we're getting somewhere.
The ultrasound goes very smoothly, and the technician is wonderful. She's even empathetic about my experience with registration and tells me that I should fill out a comment card. She knows that the hospital has been trying to fix things with registration for a while now, and needs to know about how I was treated.
Experience 3 - No Port Flush
Because I was so late for my CT scan, they're squeezing me in between two scheduled appointments. No problem. CTs take about 5 minutes. So they get someone to access my port, inject the contrast, and we're good to go.
Except. . .I realize at home the next morning that everyone was in such a rush to get those CT scans done, they never flushed my port afterwards. It's a life threatening mistake. Crud. Now I'm scared. Luckily, I have another test scheduled at St. Mark's today, so I'll go early and make sure they flush my port.
Experience 4 - Stubborn PFT Technicians That Can't Accurately Figure Out My Height
So it's another 45 minute drive back to St. Mark's. After registering for the pulmonary function tests (which took only 12 minutes total!), I go back to the radiology registration desk and ask if I can talk to Carla in CT.
"Is there a problem, ma'am?"
"Yes, I was here yesterday for a CT scan. They accessed my port, but they never flushed it afterwards. It's a life threatening mistake," I say, not realizing how loud I'm talking because the entire waiting room lets out a collective gasp at my last sentence.
Carla appologizes over and over again. It's okay, I guess. I forgot about it too in all the hustle and bustle of the previous day and after all the hassle I had with registration.
Now it's time for the PFTs. An older gentleman calls my name, and I follow him back to his area.
First, the scale for a weight and height. The weight he announces seems accurate, but there's a problem with the height. Even after insisting that I take off my flat shoes and socks, stand barefoot with my back against the back of the scale, and pressing down on my head to ensure it's level and I don't have anything height-altering things hiding on my bald head, he announces that I'm 5'2.5" tall.
Huh? I've never been taller than 5'0" my whole life. And Dale likes to kid me that I haven't reached even 5' yet, that I'm more like 4'11.75" instead.
I ask Duane to measure my height again because he surely didn't get the right number. He's annoyed with me though, because I'm messing up his organized routine.
"I'll do it again after the PFTs are over," he insists.
But I'm the patient and he's there to help me, so I insist stronger, "I'm standing here, barefoot, now. I'm not stepping off until it's right."
Reluctantly, he comes over and tries again. This time, he announces that I've now magically shrunk down to 5'.5", which is closer but still not right.
"Fine. Can we try one more time after the PFTs?" I ask. "Something is still not right. I'll just stay in my barefeet during the tests."
The PFTs are relatively uneventful, except he tries to insist that I use albuterol halfway through. I explain to him that I was told that I shouldn't ever use it because it made my heart race past 150 bpm during the last PFTs done at Timpanogos Regional Hospital, and they told me never to use it again, and that heart rate is actually dangerous.
When I explain all this to him, he's pretty insistent that I use it anyway, that those other technicians didn't know what they were doing, and that 150 bpm isn't really a problem.
I'm not convinced. If he can't even accurately get my height, how can I trust him with my lungs?
He's not happy, but he says he'll record that I'm a non-compliant, stubborn patient.
Whatever! Let me out of here please.
Before I go, he tries my height once more and gets 5'1.5" this time. He's very particular about how I stand each time, so how does he get three different readings that are all so far apart. I can't figure it out and, obviously, he can't either, so he decides he'll record that I'm 5'.5" tall. Whatever!
Monday, June 3, 2013
New Front Door
I got home from talking to Drs. Tandar and Patel about the possibility of open heart surgery to replace my aortic valve, which was VERY stressful, to a new front door.
I'm talking to Tangela on the phone as we pull into our cul-de-sac.
When we're almost in the driveway, I notice that our front door isn't white anymore. Instead, it's a beautiful shade of purple. Momentarily forgetting that I'm still on the phone, I start yelling, "Oh my! Our door is purple. It's beautiful."
Tangi, listening, says, "It is? Really?"
I don't know what I hear in her voice, because I'm immediately aware that she doesn't sound nearly as surprised as I am.
"You don't sound surprised, Tangi."
"Really?"
Suddenly, there's a loud noise at the passenger door of our car, where I'm sitting. It scares me so much that I jump (and scream again). Poor Tangi is really getting an earful during our conversation.
It's my sister, Tiffany. My sisters are sneaky and quick. While I was at the doctor's, they painted our front door.
Thanks, Tangi and Tippy :-)
And the door is beautiful! The paint color is named Bella. How appropriate and just in time for the Purple War fun run on Thursday and bake and craft sale on Saturday!
I'm talking to Tangela on the phone as we pull into our cul-de-sac.
When we're almost in the driveway, I notice that our front door isn't white anymore. Instead, it's a beautiful shade of purple. Momentarily forgetting that I'm still on the phone, I start yelling, "Oh my! Our door is purple. It's beautiful."
Tangi, listening, says, "It is? Really?"
I don't know what I hear in her voice, because I'm immediately aware that she doesn't sound nearly as surprised as I am.
"You don't sound surprised, Tangi."
"Really?"
Suddenly, there's a loud noise at the passenger door of our car, where I'm sitting. It scares me so much that I jump (and scream again). Poor Tangi is really getting an earful during our conversation.
It's my sister, Tiffany. My sisters are sneaky and quick. While I was at the doctor's, they painted our front door.
Thanks, Tangi and Tippy :-)
And the door is beautiful! The paint color is named Bella. How appropriate and just in time for the Purple War fun run on Thursday and bake and craft sale on Saturday!
Initial Heart Appointments
It's off to the UofU hospital to talk to Dr. Tandar about an aortic valve transplant. I'm not that excited that we even have to discuss the subject, but here we go.
Monday
We meet with Dr. Tandar and Dr. Amit Patel. They're pushing for a trans-apical approach either through the right groin or through my ribs on the left side because it's less recovery time than open heart surgery. Also, as they put it, these other techniques were developed for high-risk patients that might not make it off the table from open-heart surgery. Oh joy! They think that's me--high-risk, might not survive open-heart surgery. And, because I just got radiation to the right groin area, they're thinking that they probably have to go through my ribs (less desirable, more painful, and more recovery time than through the groin).
It's funny, but I think the very best part of meeting Drs. Tandar and Patel are their assistant, Sally. She's awesome. She's their transplant coordinator and is available by email or cell phone to answer any of my questions. "You're my Rachael," I say delightedly.
She probably thinks I've misheard her name and says, "No, it's Sally."
When I explain to her that Rachael Beers is my bone marrow transplant and how efficient and effective she is, and how much I love working with her, Sally is a little relieved, but I don't think she still likes my comparison.
A bunch of tests have to be done before the doctors are willing to say which procedure they'd do (through the ribs or through the groin), so we talk about scheduling those. We tell them that we're seeking a second opinion at St. Mark's Hospital, so maybe half the tests should be scheduled at St. Mark's and half at the UofU.
Wherever we feel the most comfortable is where we'll have the procedure done.
Wednesday
We're supposed to meet with Dr. Kawande at St. Mark's Hospital. However, when we get there (and not before), we're told that Dr. Kawande can't meet with us unless we want to wait three weeks, so they scheduled us with Dr. Schorlemmer instead. But first, we need to meet with another cardiac doctor first. That first doctor was an absolute waste of our time. He basically told us, "You have a lot to think about and a lot of information to sort through so that you can make a decision on which way will work better for you. I don't know what to tell you and don't have any recommendations for you."
Monday
We meet with Dr. Tandar and Dr. Amit Patel. They're pushing for a trans-apical approach either through the right groin or through my ribs on the left side because it's less recovery time than open heart surgery. Also, as they put it, these other techniques were developed for high-risk patients that might not make it off the table from open-heart surgery. Oh joy! They think that's me--high-risk, might not survive open-heart surgery. And, because I just got radiation to the right groin area, they're thinking that they probably have to go through my ribs (less desirable, more painful, and more recovery time than through the groin).
It's funny, but I think the very best part of meeting Drs. Tandar and Patel are their assistant, Sally. She's awesome. She's their transplant coordinator and is available by email or cell phone to answer any of my questions. "You're my Rachael," I say delightedly.
She probably thinks I've misheard her name and says, "No, it's Sally."
When I explain to her that Rachael Beers is my bone marrow transplant and how efficient and effective she is, and how much I love working with her, Sally is a little relieved, but I don't think she still likes my comparison.
A bunch of tests have to be done before the doctors are willing to say which procedure they'd do (through the ribs or through the groin), so we talk about scheduling those. We tell them that we're seeking a second opinion at St. Mark's Hospital, so maybe half the tests should be scheduled at St. Mark's and half at the UofU.
Wherever we feel the most comfortable is where we'll have the procedure done.
Wednesday
We're supposed to meet with Dr. Kawande at St. Mark's Hospital. However, when we get there (and not before), we're told that Dr. Kawande can't meet with us unless we want to wait three weeks, so they scheduled us with Dr. Schorlemmer instead. But first, we need to meet with another cardiac doctor first. That first doctor was an absolute waste of our time. He basically told us, "You have a lot to think about and a lot of information to sort through so that you can make a decision on which way will work better for you. I don't know what to tell you and don't have any recommendations for you."
Well, if that's what he, as an expert on the subject, thinks, how are Dale and I
supposed to figure it out? Not helpful!
Dr. Schorlemmer was much more helpful
and said, "Why don't we proceed with these five tests, which you'll have
to have prior to surgery anyway. The data from those tests will tell us what is
and isn't possible, rather than us trying to guess, based on your
history."
Hooray! A plan and someone that makes sense. So I stuck around
and Dad left me at the hospital so that he and Travis could go ATVing together.
I'll have more appointments on Thursday also. But the appointments at St. Mark's are all setting up for the perfect storm. For more details, see the post with that title!
Aortic Valve Referrals
In preparation for an allogeneic bone marrow transplant, I have an echocardiogram done to make sure my heart is cleared and can handle the stress of the transplant.
Uh oh! It seems that now my aortic valve in my heart needs to be replaced. I'm not sure why it chose now because we've been watching it for about five years now. Five years ago, I was told it would probably fail within 1-2 years, but it's been doing well and hanging in there. However, I knew if it got done to opening less than about 1", it would be time for surgery.
And that time is NOW. Crud! If we have to delay the second bone marrow transplant by more than four months, I'm predicting that the Hodgkins will be back, but there's no way my valve can continue. In fact, I'm being classified as being in heart failure until that valve is replaced.
Dr. Walker refers me to some colleagues of his at the University of Utah hospital and wants them to evaluate me to see if I'm a good candidate for an alternative procedure where the valve wouldn't need to be replaced through open heart surgery.
The idea of needing open heart surgery, of people inside my heart, terrifies me. After everything I've been through medically, you would think it would be just another checkmark on a list, but I'm very nervous about this process. So being able to repair my heart without opening my heart sounds very intriguing to me. (Although I still don't like the idea of someone messing around with my heart. It's more critical than lymph nodes, or a spleen, or an arm, or a leg, or even reproductive organs--which I've had operated on in the past.)
Dr. Wendy hears about the valve and calls me personally to tell me that she'd like me to consult with a friend of hers at St. Mark's Hospital. She then explains that open heart surgery is the preferred way to replace the aortic valve, and she's worried that UofU is just interested in the research aspects of performing the replacement in alternative methods for the numbers and data that they can gather.
I trust her and her professional opinion, so I call to make an appointment with Dr. Karwande at St. Mark's Hospital, in addition to the appointment I already have with Dr. Tandar at U of U Hospital.
Uh oh! It seems that now my aortic valve in my heart needs to be replaced. I'm not sure why it chose now because we've been watching it for about five years now. Five years ago, I was told it would probably fail within 1-2 years, but it's been doing well and hanging in there. However, I knew if it got done to opening less than about 1", it would be time for surgery.
And that time is NOW. Crud! If we have to delay the second bone marrow transplant by more than four months, I'm predicting that the Hodgkins will be back, but there's no way my valve can continue. In fact, I'm being classified as being in heart failure until that valve is replaced.
Dr. Walker refers me to some colleagues of his at the University of Utah hospital and wants them to evaluate me to see if I'm a good candidate for an alternative procedure where the valve wouldn't need to be replaced through open heart surgery.
The idea of needing open heart surgery, of people inside my heart, terrifies me. After everything I've been through medically, you would think it would be just another checkmark on a list, but I'm very nervous about this process. So being able to repair my heart without opening my heart sounds very intriguing to me. (Although I still don't like the idea of someone messing around with my heart. It's more critical than lymph nodes, or a spleen, or an arm, or a leg, or even reproductive organs--which I've had operated on in the past.)
Dr. Wendy hears about the valve and calls me personally to tell me that she'd like me to consult with a friend of hers at St. Mark's Hospital. She then explains that open heart surgery is the preferred way to replace the aortic valve, and she's worried that UofU is just interested in the research aspects of performing the replacement in alternative methods for the numbers and data that they can gather.
I trust her and her professional opinion, so I call to make an appointment with Dr. Karwande at St. Mark's Hospital, in addition to the appointment I already have with Dr. Tandar at U of U Hospital.
Sunday, May 26, 2013
Article in The Daily Herald newspaper in Provo
Check out this link: http://www.heraldextra.com/news/local/cedar-hills-residents-declare-purple-war-for-neighbor/article_ad23cfdf-26cb-5ee3-a724-f1e412ff7e82.html
It's absolutely amazing that I'd ever be in the local paper!
It's absolutely amazing that I'd ever be in the local paper!
Wednesday, May 15, 2013
How Many Medical Personnel Does Radiation Take
How many different medical personnel does it take to get radiation treatments?
1. Laurie - receptionist to answer phone calls and schedule appointments.
2. Debbie - nurse practitioner(?) to do scans, make molds, and assist the doctors.
3. Dr. McAllister - radiation oncologist to review records and plan the treatment.
4. unnamed physicist - to help the doctor figure out how to shape the radiation beams so that only the exact areas that need radiation get it and nothing else is damaged in the process.
5. Dr. Blair - radiation oncologist to review treatment plan and ensure nothing gets missed.
6. DeAnn - nurse to get vitals and current status in preparation for weekly follow up appointments with one of the radiation oncologists to ensure everything is going well with the treatments.
7. Chad - radiation technician to position me exactly for each treatment and run the radiation machine.
8. Janelle - radiation technician to position me exactly for each treatment and run the radiation machine.
9. Steve - nurse practitioner to see me for follow up appointments after radiation is completed.
How many different medical personnel does it take to get radiation treatments?
9! That's all :-)
1. Laurie - receptionist to answer phone calls and schedule appointments.
2. Debbie - nurse practitioner(?) to do scans, make molds, and assist the doctors.
3. Dr. McAllister - radiation oncologist to review records and plan the treatment.
4. unnamed physicist - to help the doctor figure out how to shape the radiation beams so that only the exact areas that need radiation get it and nothing else is damaged in the process.
5. Dr. Blair - radiation oncologist to review treatment plan and ensure nothing gets missed.
6. DeAnn - nurse to get vitals and current status in preparation for weekly follow up appointments with one of the radiation oncologists to ensure everything is going well with the treatments.
7. Chad - radiation technician to position me exactly for each treatment and run the radiation machine.
8. Janelle - radiation technician to position me exactly for each treatment and run the radiation machine.
9. Steve - nurse practitioner to see me for follow up appointments after radiation is completed.
How many different medical personnel does it take to get radiation treatments?
9! That's all :-)
Thursday, April 18, 2013
Radiation Begins
After taking a few scans, making a foam mold of my lower half so I can lay in it and position my body in the exact same way every time, adding tiny black stickers to my body (because I beg not to be permanently tattooed), and a few follow up appointments with more scans, we're finally ready to begin radiation on Thursday, April 18.
Hooray! Initially, I was told that it would take at least 2-3 weeks before we began, but it's been only a week and we're starting. Hooray!
It will take 20 sessions, so I'm scheduled to finish on May 15.
Every day I drive to Provo, walk in the side door, wait in a separate back waiting room (where I never see anyone else) until one of the technicians comes for me, walk into the leaded radiation room, drop my pants (while they hold a small cloth in front of me for modesty), get positioned on the narrow table, wait for the 2-3 technicians to finalize all the tiny alignments with those stickers, watch the technicians leave and close the heavy leaded door behind them, wait approximately 11 seconds while the machine hums over me, count off another 30 seconds or so while the machine spins around my body so that it's now positioned under me, and count off a final 8 seconds for the last part of the radiation is delivered preciously where it needs to go.
Then it's a quick hop off the table, get fully dressed again, and I'm free to go again until it's time to repeat the process.
Tomorrow, same time, same place, every weekday until 20 treatments are finished.
It's not hard, difficult, or even that time consuming. The side effects are very minimal--just some redness that feels like a minor sunburn. I start applying Radiaguard (a lotion) about the fourth or fifth day, 2-3 times a day, and its works great.
It's the drive between Cedar Hills and Provo every weekday that quickly gets old. Oh well. If it prevents the Hodgkins from coming back, it's definitely worth it!
Hooray! Initially, I was told that it would take at least 2-3 weeks before we began, but it's been only a week and we're starting. Hooray!
It will take 20 sessions, so I'm scheduled to finish on May 15.
Every day I drive to Provo, walk in the side door, wait in a separate back waiting room (where I never see anyone else) until one of the technicians comes for me, walk into the leaded radiation room, drop my pants (while they hold a small cloth in front of me for modesty), get positioned on the narrow table, wait for the 2-3 technicians to finalize all the tiny alignments with those stickers, watch the technicians leave and close the heavy leaded door behind them, wait approximately 11 seconds while the machine hums over me, count off another 30 seconds or so while the machine spins around my body so that it's now positioned under me, and count off a final 8 seconds for the last part of the radiation is delivered preciously where it needs to go.
Then it's a quick hop off the table, get fully dressed again, and I'm free to go again until it's time to repeat the process.
Tomorrow, same time, same place, every weekday until 20 treatments are finished.
It's not hard, difficult, or even that time consuming. The side effects are very minimal--just some redness that feels like a minor sunburn. I start applying Radiaguard (a lotion) about the fourth or fifth day, 2-3 times a day, and its works great.
It's the drive between Cedar Hills and Provo every weekday that quickly gets old. Oh well. If it prevents the Hodgkins from coming back, it's definitely worth it!
Thursday, April 11, 2013
Setting Up a Radiology Appointment
Now that the Hodgkins is gone--again--I need radiation--again--to try and prevent those lymph nodes from getting cancer in the future. It's a way to try and stop the Hodgkins from returning (because it tries to return in the last spot it was in).
After lots of phone calls to check with Dr. Jay's IHC office, our insurance company (Blue Cross/Blue Shield), and Central Utah Clinic in Provo, I'm finally able to determine that I have to drive down to Provo for radiation, so I call to make that appointment.
It's a good thing that I'm used to standing up for myself because Dr. McAllister's receptionist tries to tell me it will be at least a week before he can see me.
I'm not willing to wait an entire week unless I absolutely have to.
What's the delay? He doesn't have a spare 30 minutes anywhere in his schedule within the next four working days?
Well, he likes to get and review all the information from previous scans, radiation treatments, and the referral from the oncologist before that first appointment. I can understand that, so what if I pick up all the information he needs and bring it to his office?
So I head to Salt Lake City and drive to the UofU hospital where the PET scan results from Huntsman are kept, find my summary statements from Mott's Children's Hospital at the UofMichigan from when I was 7, and stop by Dr. Jay's office for my radiation records from them.
Then I drive to Provo and hand deliver everything to Kathy.
I've been around the block a few times; I know how medical things work; and I know how to speed them up.
Amazingly, Dr. McAllister can now see me on Monday, April 15 at 1:00 pm.
Whew! It's like I have to beg for the treatments I know that I need.
After lots of phone calls to check with Dr. Jay's IHC office, our insurance company (Blue Cross/Blue Shield), and Central Utah Clinic in Provo, I'm finally able to determine that I have to drive down to Provo for radiation, so I call to make that appointment.
It's a good thing that I'm used to standing up for myself because Dr. McAllister's receptionist tries to tell me it will be at least a week before he can see me.
I'm not willing to wait an entire week unless I absolutely have to.
What's the delay? He doesn't have a spare 30 minutes anywhere in his schedule within the next four working days?
Well, he likes to get and review all the information from previous scans, radiation treatments, and the referral from the oncologist before that first appointment. I can understand that, so what if I pick up all the information he needs and bring it to his office?
So I head to Salt Lake City and drive to the UofU hospital where the PET scan results from Huntsman are kept, find my summary statements from Mott's Children's Hospital at the UofMichigan from when I was 7, and stop by Dr. Jay's office for my radiation records from them.
Then I drive to Provo and hand deliver everything to Kathy.
I've been around the block a few times; I know how medical things work; and I know how to speed them up.
Amazingly, Dr. McAllister can now see me on Monday, April 15 at 1:00 pm.
Whew! It's like I have to beg for the treatments I know that I need.
Tuesday, April 9, 2013
Insurance Nightmares
I once heard that the CEO/President of Intermountain Healthcare (IHC) and the IHC insurance company and plan (SelectHealth/SelectMed) and the CEO/President of the University of Utah medical systems have a personal grudge or disagreement with each other.
Because of their disagreement, one (or both) of them vowed that they'd make sure that IHC and the UofU medical systems always remained separated from each other so that IHC providers would never be covered by insurance companies that accepted UofU providers and vice versa.
I certainly hope that is not the truth!
If it's only a squabble on a personal level between two (so-called) professionals that's keeping me from
* being seen by the radiologist that helped me before (That familiarity and history definitely helps when dealing with cancer!)
* driving only 1.5 miles from my house
* and requiring me to pass a radiation oncologist's office while driving the 30 minutes it takes to drive to south Provo to another office
then
I HOPE SOMEHOW JUSTICE IS SERVED AND THEY HAVE TO COMPENSATE EVERY PERSON THAT THEY INCONVENIENCED!
Please, please tell me that my health care decisions are not affected by disputes of a personal nature!
Because of their disagreement, one (or both) of them vowed that they'd make sure that IHC and the UofU medical systems always remained separated from each other so that IHC providers would never be covered by insurance companies that accepted UofU providers and vice versa.
I certainly hope that is not the truth!
If it's only a squabble on a personal level between two (so-called) professionals that's keeping me from
* being seen by the radiologist that helped me before (That familiarity and history definitely helps when dealing with cancer!)
* driving only 1.5 miles from my house
* and requiring me to pass a radiation oncologist's office while driving the 30 minutes it takes to drive to south Provo to another office
then
I HOPE SOMEHOW JUSTICE IS SERVED AND THEY HAVE TO COMPENSATE EVERY PERSON THAT THEY INCONVENIENCED!
Please, please tell me that my health care decisions are not affected by disputes of a personal nature!
Monday, April 8, 2013
No Dr. Jay This Time
I decide to go into work on Monday morning, because I agreed to cover for my team. Cancer or not, I'm a person of my word.
While I'm at work, I'm trying to navigate how to set up radiation appointments.
So Corrine from Dr. Jay's office is back in the office and relays this unfortunate news: since we now have Blue Cross/Blue Shield insurance, Dr. Jay isn't a covered provider for them. He's only an IHC (SelectHealth/SelectMed) provider, so I need to contact the nearest radiation oncologist--in Provo!
I immediately put in a call to the Radiation Oncology department at Central Utah Clinic in Provo and leave a message.
About 11:00 am, I haven't heard back from Provo, so I call again. Finally I get through to the receptionist who tells me that the soonest that she can fit me in is Friday afternoon. Really? Are you kidding me? I know how scheduling goes and know that there is room in their schedule sometime before Friday.
The waiting game is the worst part for me. When you know you have a serious medical condition and you know what the next step is, why do you have to wait for it?
I decide I can't handle waiting, so I call the receptionist on her statement. "Really? There are no possible appointment times from Monday afternoon until Friday afternoon? With two doctors in the office? Are they on vacation? At a conference? Surely, we can take the next step without having to wait until Friday? I know how this goes. This will be my third time getting radiation and it's my fourth time dealing with Hodgkins lymphoma. Isn't there something we can do to move things along?"
She bristling a little, but then starts explaining that Dr. McAllister first needs a referral from Dr. Wendy. Then, he needs time to receive all of my records and time to review them, so Friday is probably the first chance he'll have to get everything he needs.
"It's okay; I understand what you're telling me. What can I do to speed up the process? I'll hang up now and make sure Dr. Wendy's office calls you immediately. What else? What records does Dr. McAllister need? I'll get them and hand deliver them to your office if it will help."
So finally acquiesces that if they get the referral call and if they get my medical records faxed over from Dr. Wendy, she can fit me in on Wednesday. Whew! One obstacle down.
While I'm at work, I'm trying to navigate how to set up radiation appointments.
So Corrine from Dr. Jay's office is back in the office and relays this unfortunate news: since we now have Blue Cross/Blue Shield insurance, Dr. Jay isn't a covered provider for them. He's only an IHC (SelectHealth/SelectMed) provider, so I need to contact the nearest radiation oncologist--in Provo!
I immediately put in a call to the Radiation Oncology department at Central Utah Clinic in Provo and leave a message.
About 11:00 am, I haven't heard back from Provo, so I call again. Finally I get through to the receptionist who tells me that the soonest that she can fit me in is Friday afternoon. Really? Are you kidding me? I know how scheduling goes and know that there is room in their schedule sometime before Friday.
The waiting game is the worst part for me. When you know you have a serious medical condition and you know what the next step is, why do you have to wait for it?
I decide I can't handle waiting, so I call the receptionist on her statement. "Really? There are no possible appointment times from Monday afternoon until Friday afternoon? With two doctors in the office? Are they on vacation? At a conference? Surely, we can take the next step without having to wait until Friday? I know how this goes. This will be my third time getting radiation and it's my fourth time dealing with Hodgkins lymphoma. Isn't there something we can do to move things along?"
She bristling a little, but then starts explaining that Dr. McAllister first needs a referral from Dr. Wendy. Then, he needs time to receive all of my records and time to review them, so Friday is probably the first chance he'll have to get everything he needs.
"It's okay; I understand what you're telling me. What can I do to speed up the process? I'll hang up now and make sure Dr. Wendy's office calls you immediately. What else? What records does Dr. McAllister need? I'll get them and hand deliver them to your office if it will help."
So finally acquiesces that if they get the referral call and if they get my medical records faxed over from Dr. Wendy, she can fit me in on Wednesday. Whew! One obstacle down.
Friday, April 5, 2013
Next, Next Step
Back to Dr. Wendy's office to find out the results of the recent PET scan.
I wonder what we'll find out, but I have absolutely no inspiration or feelings as to the results. It would be great if the cancer was totally gone, but either way it means radiation.
These are all the possibilities for this fourth occurrence of Hodgkins Lymphoma and their probable courses of action that I can come up with:
* It's gone, so we'll do follow up salvage radiation like we did before on my left inguinal lymph nodes.
* It's in one place only (right inguinal lymph node), so we'll do targeted radiation to remove it completed.
* It's in more than one place, so we'll continue chemo (for up to four more doses) as long as it's responding (shrinking) to the Adcetris.
Dr. Wendy reads part of the PET report to me. There's still lymphoma in my right inguinal lymph node. Originally, it measured over 19 on the activity level of the PET, now it's barely over 2. But there's no activity anywhere else.
Okay, no real surprises there. So all of the other eight spots that originally showed cancerous activity are gone. And the one remaining place is so, so close to being gone that chemo won't reach it anymore. So she's recommending me to Dr. Jay Clark for radiation treatments.
I don't know how those treatments will differ (if at all) from the salvage chemo I received last time, but that was easy with no side effects. Hopefully, it will be more of the same this time.
Oh wait. What about the possibility of a second bone marrow transplant, I ask. When should I follow up with the BMT team at LDS Hospital?
With a slightly surprised look, Dr. Wendy responds that I should probably consult with them before doing any radiation treatments because she doesn't want the radiation treatments to conflict with anything the BMT team wants to do. So wait to hear from LDS Hospital before scheduling with Dr. Jay.
Whew! It's a good thing that patients advocate for themselves and keep their doctors on track.
I wait to hear from Rachel Beers at LDS Hospital. She feels like one of my best friends by now after being the point of contact throughout the entire autologous bone marrow transplant process. She got a very terse message from Dr. Wendy's office and calls me for clarification. I'm able to clarify that the lymphoma is very close to being gone but needs radiation and we don't want to proceed with that step if it will interfere with the possibility of an allogeneic (from a donor) bone marrow transplant.
After checking with Dr. Julie Asch (another friend by this point of my life), she assures me that I can proceed with radiation.
I call Dr. Jay's office, only to find out that Corinne left early and forwarded all calls to, what seems like, an older female friend. That person isn't in the office and doesn't have access to the appointment books so now I have to wait for Monday to call. Annoying because I'm supposed to be covering for my team at work while they attend a conference in San Diego. I don't know whether to go to work on Monday to cover for my team or try and work from home with the hope that Dr. Jay can fit me in his schedule on Monday.
Why do health professionals have to take off before 4:30 p.m. on Friday without any way to get answers to pressing medical questions?
I wonder what we'll find out, but I have absolutely no inspiration or feelings as to the results. It would be great if the cancer was totally gone, but either way it means radiation.
These are all the possibilities for this fourth occurrence of Hodgkins Lymphoma and their probable courses of action that I can come up with:
* It's gone, so we'll do follow up salvage radiation like we did before on my left inguinal lymph nodes.
* It's in one place only (right inguinal lymph node), so we'll do targeted radiation to remove it completed.
* It's in more than one place, so we'll continue chemo (for up to four more doses) as long as it's responding (shrinking) to the Adcetris.
Dr. Wendy reads part of the PET report to me. There's still lymphoma in my right inguinal lymph node. Originally, it measured over 19 on the activity level of the PET, now it's barely over 2. But there's no activity anywhere else.
Okay, no real surprises there. So all of the other eight spots that originally showed cancerous activity are gone. And the one remaining place is so, so close to being gone that chemo won't reach it anymore. So she's recommending me to Dr. Jay Clark for radiation treatments.
I don't know how those treatments will differ (if at all) from the salvage chemo I received last time, but that was easy with no side effects. Hopefully, it will be more of the same this time.
Oh wait. What about the possibility of a second bone marrow transplant, I ask. When should I follow up with the BMT team at LDS Hospital?
With a slightly surprised look, Dr. Wendy responds that I should probably consult with them before doing any radiation treatments because she doesn't want the radiation treatments to conflict with anything the BMT team wants to do. So wait to hear from LDS Hospital before scheduling with Dr. Jay.
Whew! It's a good thing that patients advocate for themselves and keep their doctors on track.
I wait to hear from Rachel Beers at LDS Hospital. She feels like one of my best friends by now after being the point of contact throughout the entire autologous bone marrow transplant process. She got a very terse message from Dr. Wendy's office and calls me for clarification. I'm able to clarify that the lymphoma is very close to being gone but needs radiation and we don't want to proceed with that step if it will interfere with the possibility of an allogeneic (from a donor) bone marrow transplant.
After checking with Dr. Julie Asch (another friend by this point of my life), she assures me that I can proceed with radiation.
I call Dr. Jay's office, only to find out that Corinne left early and forwarded all calls to, what seems like, an older female friend. That person isn't in the office and doesn't have access to the appointment books so now I have to wait for Monday to call. Annoying because I'm supposed to be covering for my team at work while they attend a conference in San Diego. I don't know whether to go to work on Monday to cover for my team or try and work from home with the hope that Dr. Jay can fit me in his schedule on Monday.
Why do health professionals have to take off before 4:30 p.m. on Friday without any way to get answers to pressing medical questions?
Wednesday, April 3, 2013
Broken Ankle Follow Up
Dr. Garrett asked me to return for follow up x-rays on my left ankle about two weeks out, and it's been two and a half weeks, so I head back to Urgent Care in Lindon.
Dr. Garrett is out on Spring Break, but a nurse practitioner is available to see me, so I head back to x-ray to get follow up images.
I never asked what part of my ankle I broke, so I ask the technician if I can see my earlier x-rays to see what I broke. She needs to know what x-rays to do, so she pulls them up and the formal report from the radiologist who read the x-rays after I left Dr. Garrett a few weeks ago.
She pulls up the x-rays and shows me where an earlier break of my malleolus occurred. (The malleolus is the rounded bony prominence on the outside of each ankle.) She can tell it was an earlier break because the edges are all rounded and smooth--evidence of a healed broken bone. And she points out the sharp jagged lines of what Dr. Garrett assumed was where I broke it this time. It's a smaller break, about a quarter of the size and behind the earlier break.
She pulls up the radiologist's report and we read together that he notes the earlier break but doesn't see evidence of any other breaks.
Wait a minute? I've been clunking around in that stupid boot when I didn't need to? Forget that! I'm ready to be done with the walking boot. Hooray!
The technician doesn't want to subject me to more radiation for a non-break, so back to the waiting room I go to wait for the nurse practitioner. She's fast and a few minutes later we're discussing my foot. She's looked at the old x-rays and the radiologist's report and is absolutely convinced I have broken my ankle and doesn't really know how to explain the report--except that radiologist's in her opinion can't be trusted.
She proceeds to tell me about a violent pain she had in her stomach for a while ago, insisted upon CT scans, and read the radiologist's report that all was normal. She insisted on seeing the pictures herself and noted lots of fluid accumulation right where she was feeling the pain. Turns out she needed surgery but felt immediately better after the surgery.
I recounted my own recent experience of having a CT scan to track the progress of chemo in shrinking the tumor in my right inguinal lymph node and not having the radiologist even mention the lump in his report. Then having to have them go back into the scans, measure the area, and add an addendum to the original report with the new measurements.
I can understand how they might miss a small break if they miss measuring a tumor that we've been tracking for several months now and were asked to compare the size to previous scans that were done at the same place (Central Utah Clinic in American Fork).
So back to x-ray we go to compare old films to new films to see if it's healing. The malleolus is supposed to be one bone. It looks like the new break is healing but it's not healing or attaching itself to the malleolus; instead, it's a separate little disk of bone that's just out there by itself.
She asks if it's causing pain. (No, because I can't feel my feet due to the neuropathy.) And then suggests that I come back in another two and half weeks to ensure that it continues to heal. If it was causing me pain or making it more difficult to walk, she recommend surgery. However, it's hard to tell if it needs surgical intervention because walking is difficult anyway, and I can't feel my feet.
The comedy of errors that is my life--it isn't broken, but wait it really is--continues!
Dr. Garrett is out on Spring Break, but a nurse practitioner is available to see me, so I head back to x-ray to get follow up images.
I never asked what part of my ankle I broke, so I ask the technician if I can see my earlier x-rays to see what I broke. She needs to know what x-rays to do, so she pulls them up and the formal report from the radiologist who read the x-rays after I left Dr. Garrett a few weeks ago.
She pulls up the x-rays and shows me where an earlier break of my malleolus occurred. (The malleolus is the rounded bony prominence on the outside of each ankle.) She can tell it was an earlier break because the edges are all rounded and smooth--evidence of a healed broken bone. And she points out the sharp jagged lines of what Dr. Garrett assumed was where I broke it this time. It's a smaller break, about a quarter of the size and behind the earlier break.
She pulls up the radiologist's report and we read together that he notes the earlier break but doesn't see evidence of any other breaks.
Wait a minute? I've been clunking around in that stupid boot when I didn't need to? Forget that! I'm ready to be done with the walking boot. Hooray!
The technician doesn't want to subject me to more radiation for a non-break, so back to the waiting room I go to wait for the nurse practitioner. She's fast and a few minutes later we're discussing my foot. She's looked at the old x-rays and the radiologist's report and is absolutely convinced I have broken my ankle and doesn't really know how to explain the report--except that radiologist's in her opinion can't be trusted.
She proceeds to tell me about a violent pain she had in her stomach for a while ago, insisted upon CT scans, and read the radiologist's report that all was normal. She insisted on seeing the pictures herself and noted lots of fluid accumulation right where she was feeling the pain. Turns out she needed surgery but felt immediately better after the surgery.
I recounted my own recent experience of having a CT scan to track the progress of chemo in shrinking the tumor in my right inguinal lymph node and not having the radiologist even mention the lump in his report. Then having to have them go back into the scans, measure the area, and add an addendum to the original report with the new measurements.
I can understand how they might miss a small break if they miss measuring a tumor that we've been tracking for several months now and were asked to compare the size to previous scans that were done at the same place (Central Utah Clinic in American Fork).
So back to x-ray we go to compare old films to new films to see if it's healing. The malleolus is supposed to be one bone. It looks like the new break is healing but it's not healing or attaching itself to the malleolus; instead, it's a separate little disk of bone that's just out there by itself.
She asks if it's causing pain. (No, because I can't feel my feet due to the neuropathy.) And then suggests that I come back in another two and half weeks to ensure that it continues to heal. If it was causing me pain or making it more difficult to walk, she recommend surgery. However, it's hard to tell if it needs surgical intervention because walking is difficult anyway, and I can't feel my feet.
The comedy of errors that is my life--it isn't broken, but wait it really is--continues!
Monday, April 1, 2013
PET Scan
I was too sick with bronchitis last Thursday when the PET scan was originally scheduled, so it's rescheduled for today at 12:30 p.m. at Huntsman Cancer Institute.
It's a beautiful building with amazing materials and gorgeous stone that high on the mountainside behind Primary Childrens and the University of Utah hospitals. Just walking in seems like entering a place of authority that knows what it's doing and calm assurance.
I get to third floor radiology and am almost immediately taken back for the PET scan.
Whoops, but my port isn't accessed and the technicians haven't been trained how to access ports. Weird, because I swear that last time, they accessed it okay.
But they have to find someone else that can access ports, so I'm wheeled off to mammography or the breast health department (trying to balance a large oxygen tank and it's cart on top of the arm rests) that's just down the hallway.
I'm amazed to watch as the nurse in the lab has to use sterile technique to access the port and even comment about it. It's interesting to see the different protocols that different medical facilities use, because Dr. Wendy's clinic (which is part of Huntsman Cancer Institute) doesn't use sterile technique, just a fresh pair of gloves to access my port.
The port is successfully accessed, so I'm wheeled back to radiology where the radioactive isotope is injected and the long waiting period begins.
The lights are dimmed, I'm covered with two warm blankets, and I proceed to rest quietly (without moving) for 75 minutes. I'm getting pretty good at accounting for the passage of time because just about when I think it's been 75 minutes, the doors open and I'm whisked off to the CT/PET machine.
No oral or IV contrast, and the scans are complete in about 35 minutes.
I'm free for the rest of the day. Well, as free as I can be with a walking boot on my left foot and dragging a large oxygen tank and its cart behind me. I even manage to snag a fun size Twix bar from the valet attendants that's left over from Easter (because I've been fasting since 6 a.m. and it's now after 3:00 p.m.).
Now to drive back home.
It's a beautiful building with amazing materials and gorgeous stone that high on the mountainside behind Primary Childrens and the University of Utah hospitals. Just walking in seems like entering a place of authority that knows what it's doing and calm assurance.
I get to third floor radiology and am almost immediately taken back for the PET scan.
Whoops, but my port isn't accessed and the technicians haven't been trained how to access ports. Weird, because I swear that last time, they accessed it okay.
But they have to find someone else that can access ports, so I'm wheeled off to mammography or the breast health department (trying to balance a large oxygen tank and it's cart on top of the arm rests) that's just down the hallway.
I'm amazed to watch as the nurse in the lab has to use sterile technique to access the port and even comment about it. It's interesting to see the different protocols that different medical facilities use, because Dr. Wendy's clinic (which is part of Huntsman Cancer Institute) doesn't use sterile technique, just a fresh pair of gloves to access my port.
The port is successfully accessed, so I'm wheeled back to radiology where the radioactive isotope is injected and the long waiting period begins.
The lights are dimmed, I'm covered with two warm blankets, and I proceed to rest quietly (without moving) for 75 minutes. I'm getting pretty good at accounting for the passage of time because just about when I think it's been 75 minutes, the doors open and I'm whisked off to the CT/PET machine.
No oral or IV contrast, and the scans are complete in about 35 minutes.
I'm free for the rest of the day. Well, as free as I can be with a walking boot on my left foot and dragging a large oxygen tank and its cart behind me. I even manage to snag a fun size Twix bar from the valet attendants that's left over from Easter (because I've been fasting since 6 a.m. and it's now after 3:00 p.m.).
Now to drive back home.
Tuesday, March 26, 2013
Next Step
So where are we at now?
I meet with Dr. Wendy again to see what the recent CT scan showed.
And it doesn't seem like the one tumor we know about is changing much. It's probably too small for the chemo to accurately target it.
"So now get a PET scan and see what we're dealing with," I add.
And immediately, I'm harassed by Dr. Wendy. "Why do all of my patients today like to second guess me without listening to me."
"Well, it's not like any of this is a surprise to me. We've been down this road several times together," I remind her. That seems to mollify her.
Okay, so no chemo today. Instead, I'll wait for a PET scan to be scheduled at Huntsman Cancer Institute in Salt Lake City again.
I meet with Dr. Wendy again to see what the recent CT scan showed.
And it doesn't seem like the one tumor we know about is changing much. It's probably too small for the chemo to accurately target it.
"So now get a PET scan and see what we're dealing with," I add.
And immediately, I'm harassed by Dr. Wendy. "Why do all of my patients today like to second guess me without listening to me."
"Well, it's not like any of this is a surprise to me. We've been down this road several times together," I remind her. That seems to mollify her.
Okay, so no chemo today. Instead, I'll wait for a PET scan to be scheduled at Huntsman Cancer Institute in Salt Lake City again.
Wednesday, March 20, 2013
CT Scans and Contrast
It's the day before my CT scan is scheduled, so I have to pick up oral contrast to drink tonight and tomorrow morning before the scan.
On my drive over to Central Utah Clinic's (CUC) Imaging Department, I start thinking about all of the radiologic scans I've had for cancer over the years, lymphangiograms, CT scans, PET scans. I'll bet the numbers are starting to approach 100 (or at least it feels that way to me). That's a lot of contrast that my body has had to deal with.
Every time I have a scan, the technologists seem surprised that I'm not diabetic yet, like my body (pancreas, kidneys, and liver mostly) hasn't started refusing to work properly because of everything it's been subject to so far.
Actually, now that I'm thinking about it, it seems like I was told in the last month or so that my liver enzymes weren't quite normal in a recent blood count and I should start watching that.
Now, I'm a little paranoid about the amount of contrast that I've been pouring into my body; and I'm on the way to pick up two more bottles of the stuff? Not to mention the IV contrast they'll also shoot through my port?
And there's no accounting for body type or size in the contrast they hand you. "CT Scan of the abdomen? Here, drink these two bottles." It didn't matter if I had the scans done when I weighed 231 pounds or now that I'm down to 164 pounds. They want me to pour the same amount of junk into my body and let my kidneys and liver fight to filter it out. That just doesn't seem right.
I arrive at the Imaging Department a little ticked off at Central Utah Clinic's protocols. Huntsman Cancer Institute in Salt Lake City doesn't use any contrast--oral or IV--for PET scans, which are even more detailed than CT scans, because their radiologists have realized the contrast doesn't improve the quality of the pictures enough to justify the potential havoc it can wreak on already-weakened bodies.
So I ask to speak to the radiologist at CUC. Surely, they've got to give some on the amount of contrast they demand when considering my body and all it's been through.
I'm politely told that the radiologist is in a procedure with another patient and they don't usually talk to patients anyway. It's okay. I'm determined. I'll wait. Exasperated by my stubbornness to be heard, the receptionist goes to find a technician that will talk to me. I can hear part of their interchange as I wait at the desk.
"I'll go talk to her. The radiologist is busy."
"Yeah, good luck with that."
So I start telling the technologist that I'm worried about pouring more contrast into my body when it's obviously been through so much already, and that there's no consideration for body type or mass taken into account when handing out contrast.
"You're a male, professional defensive linebacker who's 6'5" and 350 pounds? Great. Drink these two bottles of contrast." "You're a female cancer patient who's 5'0" and 164 pounds? Great. Drink these two bottles of contrast."
Then, and only then am I offered a different style of contrast. One that doesn't take the body 4-5 days to break down, just a couple hours, and one that doesn't have any known side affects or possibility of damaging bodies. I just need to arrive tomorrow morning an hour earlier so I can drink it in the office.
Why aren't patients made aware of the choices they have unless they really push back--hard!--at what's being asked of them?
I arrive the next morning an hour earlier and am asked to drink about half of the volume of what those two bottles of contrast contained. I still leave about a swallowful of the new contrast in the bottom of the glass, just on principle! But I'm pleasantly surprised to find that this new contrast tastes much better. No chalky, milky stuff that I'm afraid my body is conditioned to gag on by now. Instead, it's almost a translucent tart substance.
So I didn't convince them not to give my any contrast, but at least we found a less dangerous and less volume (that still isn't based on my body type or size) compromise.
It pays to speak up and advocate for yourself!
On my drive over to Central Utah Clinic's (CUC) Imaging Department, I start thinking about all of the radiologic scans I've had for cancer over the years, lymphangiograms, CT scans, PET scans. I'll bet the numbers are starting to approach 100 (or at least it feels that way to me). That's a lot of contrast that my body has had to deal with.
Every time I have a scan, the technologists seem surprised that I'm not diabetic yet, like my body (pancreas, kidneys, and liver mostly) hasn't started refusing to work properly because of everything it's been subject to so far.
Actually, now that I'm thinking about it, it seems like I was told in the last month or so that my liver enzymes weren't quite normal in a recent blood count and I should start watching that.
Now, I'm a little paranoid about the amount of contrast that I've been pouring into my body; and I'm on the way to pick up two more bottles of the stuff? Not to mention the IV contrast they'll also shoot through my port?
And there's no accounting for body type or size in the contrast they hand you. "CT Scan of the abdomen? Here, drink these two bottles." It didn't matter if I had the scans done when I weighed 231 pounds or now that I'm down to 164 pounds. They want me to pour the same amount of junk into my body and let my kidneys and liver fight to filter it out. That just doesn't seem right.
I arrive at the Imaging Department a little ticked off at Central Utah Clinic's protocols. Huntsman Cancer Institute in Salt Lake City doesn't use any contrast--oral or IV--for PET scans, which are even more detailed than CT scans, because their radiologists have realized the contrast doesn't improve the quality of the pictures enough to justify the potential havoc it can wreak on already-weakened bodies.
So I ask to speak to the radiologist at CUC. Surely, they've got to give some on the amount of contrast they demand when considering my body and all it's been through.
I'm politely told that the radiologist is in a procedure with another patient and they don't usually talk to patients anyway. It's okay. I'm determined. I'll wait. Exasperated by my stubbornness to be heard, the receptionist goes to find a technician that will talk to me. I can hear part of their interchange as I wait at the desk.
"I'll go talk to her. The radiologist is busy."
"Yeah, good luck with that."
So I start telling the technologist that I'm worried about pouring more contrast into my body when it's obviously been through so much already, and that there's no consideration for body type or mass taken into account when handing out contrast.
"You're a male, professional defensive linebacker who's 6'5" and 350 pounds? Great. Drink these two bottles of contrast." "You're a female cancer patient who's 5'0" and 164 pounds? Great. Drink these two bottles of contrast."
Then, and only then am I offered a different style of contrast. One that doesn't take the body 4-5 days to break down, just a couple hours, and one that doesn't have any known side affects or possibility of damaging bodies. I just need to arrive tomorrow morning an hour earlier so I can drink it in the office.
Why aren't patients made aware of the choices they have unless they really push back--hard!--at what's being asked of them?
I arrive the next morning an hour earlier and am asked to drink about half of the volume of what those two bottles of contrast contained. I still leave about a swallowful of the new contrast in the bottom of the glass, just on principle! But I'm pleasantly surprised to find that this new contrast tastes much better. No chalky, milky stuff that I'm afraid my body is conditioned to gag on by now. Instead, it's almost a translucent tart substance.
So I didn't convince them not to give my any contrast, but at least we found a less dangerous and less volume (that still isn't based on my body type or size) compromise.
It pays to speak up and advocate for yourself!
Monday, March 18, 2013
Another Hiccup
So maybe I don't make the best choices sometimes.
It's Sunday, St. Patrick's Day, and I want to wear a pair of green wedge platforms for the holiday. I took trial run with them Saturday night to the adult session of Stake Conference. They're not heels where I'm forced to try and balance on the soles of my feet only and they're only about a 2.5" platform, so I figure it's safe to proceed
We have about ten minutes before we have to leave Sunday morning. Everyone's ready or finishing their preparations, so I head back to the closet to grab my green platforms. Before I make it out of our bathroom, I've managed to roll my left ankle pretty severely and even cry out from the pain and the suddenness of being so off balance; but I'm determined to proceed.
I make it out to our living room where Dale, Miriam, Travis, my sister Tressie, her two daughters Karli and Kayla, and some other girls are waiting for us to leave. Before I've moved two steps from the edge of our couch, I roll my ankle twice more, with Dale having to reach out and catch me the last time.
Without missing a beat, he asks "What flats should I go get you?" and he kicks that pretty green platform right off my left foot.
Darn! I guess you shouldn't try to wear platform shoes when you can't feel your feet. If you can't walk or balance in regular shoes, any type of heel probably isn't the best decision.
We make it to Stake Conference and are ushered to the front so that Dale, Tressie, and I can sit together at the end of a row (while Miriam, Travis, and the rest of the girls get to sit in the back). Travis is carrying my bag, so it goes back with them without me realizing that I don't have it.
Almost as soon as I sit down, my foot starts throbbing. It's not so painful, but I can feel every heartbeat vibrating through it and there is a little pain associated with each beat.
"Dale, I think I need to go out and prop my foot up," I whisper to him. So a few minutes later, I'm hobbling on one good foot and dragging a large oxygen tank and its cart out the chapel doors to the nearest couch.
Tressie comes out a few seconds later and offers to drag a folding chair over as a place to prop up my foot and that's how we spend Stake Conference.
On Monday, my foot is a little swollen and a little bruised and I wonder how much damage I really did to it. Because I can't really feel it, is it possible I broke it and don't know?
Knowing my propensity for having multiple issues with my body, I head off to Urgent Care in Lindon.
"I need to have my left ankle x-rayed to ensure that I didn't break it," I inform the front desk staff and the attending nurse. I'm assured that I'm the next patient and that the doctor will be with me shortly.
After what seems like an hour and after I've had a chance to devour an entire magazine, I hobble out to find my sheet on the door and look at the time I was checked in. 11:08 a.m. It's now 12:06 p.m., so it has been an hour. I'm kind of surprised that my internal clock is so accurate.
When I ask the nurses how much longer, they agree it's been too long and they'll take me back for x-rays before the doctor sees me so he can look at them when he's finally finished with the other patient.
About ten minutes later, after x-rays, Dr. Garrett Smith comes in and says, "Yeah, well you did a good job. I'm pretty sure your ankle is broken. You'll need to be on crutches for at least two weeks."
Knowing what my body has been through and that chemo zaps calcium from bones, I automatically translate, "Okay for me, that means at least four weeks and probably more like six." Then I say, "Yeah, well as soon as you help me figure out how to hobble on crutches while dragging oxygen around, I'm all over your plan." Crutches are just not going to work.
During our conversation, I tell him that I can't really feel my feet due to the grade 3 or 4 peripheral neuropathy. Yet twice during our time together, he says "Just let pain be your guide. If it's hurts, don't walk on it" and "I can prescribe something for pain."
Pain? What pain? If I think about it hard, there might be some aching bone pain that might register about a 3 on the 1-10 usual pain scale. I'm certainly not taking anything (not even Ibuprofen) for a 3. And if I can walk on it as long as it doesn't hurt, I'm good to go now.
Nope, not without having to discuss whether we should cast it or put a walking boot on my left foot.
"What's the easiest to walk on?" I ask. Definitely the walking boot, so I'm fitted with a large, clunky, heavy black boot before managing to leave the office.
My life is a comedy of errors at this point. Hobbling around in a heavy walking boot and dragging oxygen is quite the balancing act, without bringing the numbness from the neuropathy into the equation. What else can I do at this point but just laugh? And laugh I do!
When one of my visiting teachers hears that I've broken my ankle, her first impression is to bring her family home from Disneyland so she can help me. Are you kidding? It's a great thought, but my ankle is just another silly part of my life right now. It's not like I need surgery or it's bad enough that I can't be mobile. It's just a laughable addition to my life at this point. The thought is comforting and amazing but definitely not needed!
It's Sunday, St. Patrick's Day, and I want to wear a pair of green wedge platforms for the holiday. I took trial run with them Saturday night to the adult session of Stake Conference. They're not heels where I'm forced to try and balance on the soles of my feet only and they're only about a 2.5" platform, so I figure it's safe to proceed
We have about ten minutes before we have to leave Sunday morning. Everyone's ready or finishing their preparations, so I head back to the closet to grab my green platforms. Before I make it out of our bathroom, I've managed to roll my left ankle pretty severely and even cry out from the pain and the suddenness of being so off balance; but I'm determined to proceed.
I make it out to our living room where Dale, Miriam, Travis, my sister Tressie, her two daughters Karli and Kayla, and some other girls are waiting for us to leave. Before I've moved two steps from the edge of our couch, I roll my ankle twice more, with Dale having to reach out and catch me the last time.
Without missing a beat, he asks "What flats should I go get you?" and he kicks that pretty green platform right off my left foot.
Darn! I guess you shouldn't try to wear platform shoes when you can't feel your feet. If you can't walk or balance in regular shoes, any type of heel probably isn't the best decision.
We make it to Stake Conference and are ushered to the front so that Dale, Tressie, and I can sit together at the end of a row (while Miriam, Travis, and the rest of the girls get to sit in the back). Travis is carrying my bag, so it goes back with them without me realizing that I don't have it.
Almost as soon as I sit down, my foot starts throbbing. It's not so painful, but I can feel every heartbeat vibrating through it and there is a little pain associated with each beat.
"Dale, I think I need to go out and prop my foot up," I whisper to him. So a few minutes later, I'm hobbling on one good foot and dragging a large oxygen tank and its cart out the chapel doors to the nearest couch.
Tressie comes out a few seconds later and offers to drag a folding chair over as a place to prop up my foot and that's how we spend Stake Conference.
On Monday, my foot is a little swollen and a little bruised and I wonder how much damage I really did to it. Because I can't really feel it, is it possible I broke it and don't know?
Knowing my propensity for having multiple issues with my body, I head off to Urgent Care in Lindon.
"I need to have my left ankle x-rayed to ensure that I didn't break it," I inform the front desk staff and the attending nurse. I'm assured that I'm the next patient and that the doctor will be with me shortly.
After what seems like an hour and after I've had a chance to devour an entire magazine, I hobble out to find my sheet on the door and look at the time I was checked in. 11:08 a.m. It's now 12:06 p.m., so it has been an hour. I'm kind of surprised that my internal clock is so accurate.
When I ask the nurses how much longer, they agree it's been too long and they'll take me back for x-rays before the doctor sees me so he can look at them when he's finally finished with the other patient.
About ten minutes later, after x-rays, Dr. Garrett Smith comes in and says, "Yeah, well you did a good job. I'm pretty sure your ankle is broken. You'll need to be on crutches for at least two weeks."
Knowing what my body has been through and that chemo zaps calcium from bones, I automatically translate, "Okay for me, that means at least four weeks and probably more like six." Then I say, "Yeah, well as soon as you help me figure out how to hobble on crutches while dragging oxygen around, I'm all over your plan." Crutches are just not going to work.
During our conversation, I tell him that I can't really feel my feet due to the grade 3 or 4 peripheral neuropathy. Yet twice during our time together, he says "Just let pain be your guide. If it's hurts, don't walk on it" and "I can prescribe something for pain."
Pain? What pain? If I think about it hard, there might be some aching bone pain that might register about a 3 on the 1-10 usual pain scale. I'm certainly not taking anything (not even Ibuprofen) for a 3. And if I can walk on it as long as it doesn't hurt, I'm good to go now.
Nope, not without having to discuss whether we should cast it or put a walking boot on my left foot.
"What's the easiest to walk on?" I ask. Definitely the walking boot, so I'm fitted with a large, clunky, heavy black boot before managing to leave the office.
My life is a comedy of errors at this point. Hobbling around in a heavy walking boot and dragging oxygen is quite the balancing act, without bringing the numbness from the neuropathy into the equation. What else can I do at this point but just laugh? And laugh I do!
When one of my visiting teachers hears that I've broken my ankle, her first impression is to bring her family home from Disneyland so she can help me. Are you kidding? It's a great thought, but my ankle is just another silly part of my life right now. It's not like I need surgery or it's bad enough that I can't be mobile. It's just a laughable addition to my life at this point. The thought is comforting and amazing but definitely not needed!
Tuesday, March 5, 2013
Tenth (and Last!) Adcetris Dose
You can tell that Dr. Wendy is consulting with others about my case in between my treatments. Today, she has an entirely new plan.
We'll go ahead with today's dose of Adcetris, then get a CT scan to see where the tumor is at. It seems chemo isn't as effective at reaching cancerous tumors once they're smaller than about a centimeter, so we might have to do radiation to get rid of it entirely.
No real changes with chemo. It's just business as usual, so we'll wait to see what the CT scan shows.
We'll go ahead with today's dose of Adcetris, then get a CT scan to see where the tumor is at. It seems chemo isn't as effective at reaching cancerous tumors once they're smaller than about a centimeter, so we might have to do radiation to get rid of it entirely.
No real changes with chemo. It's just business as usual, so we'll wait to see what the CT scan shows.
Wednesday, February 13, 2013
Ninth Adcetris Dose
There's not much to tell.
We keep doing chemo. The affects are pretty well managed now, but I'm starting to feel sick from some kind of sinus infection, so Dr. Wendy gives me a prescription for an antibiotic, one I've not heard of before--Keflex.
The peripheral neuropathy seems to be increasing, but maybe it's because I'm more aware of it in my arms and legs now. Like, my legs are numb about halfway up my thighs now and especially on the insides of the knees.
The plan is to do twelve doses of Adcetris total. That's just two more after today. The tumor keeps shrinking and is almost gone, so that should take care of it. We'll do a CT scan, then wait about a month and do a PET scan and see where we're at.
Life keeps marching on, and I'm definitely still kicking!
We keep doing chemo. The affects are pretty well managed now, but I'm starting to feel sick from some kind of sinus infection, so Dr. Wendy gives me a prescription for an antibiotic, one I've not heard of before--Keflex.
The peripheral neuropathy seems to be increasing, but maybe it's because I'm more aware of it in my arms and legs now. Like, my legs are numb about halfway up my thighs now and especially on the insides of the knees.
The plan is to do twelve doses of Adcetris total. That's just two more after today. The tumor keeps shrinking and is almost gone, so that should take care of it. We'll do a CT scan, then wait about a month and do a PET scan and see where we're at.
Life keeps marching on, and I'm definitely still kicking!
Wednesday, January 23, 2013
Eighth Adcetris Dose
At least halfway through chemo after today. 8/16 or halfway through the maximum amount of Adcetris doses allowed.
If it continues as well as it has been and the peripheral neuropathy eases up, the rest of the doses should be no problem.
Although, if I'm honest, ever since my last appointment and the fact that Dr. Wendy can no longer feel the largest tumor, my hope is that we'll schedule scans in the next three weeks (normal procedure after every two doses, so it's time again), and those scans will show no more cancer.
Not a lot to report today, although I do think the peripheral neuropathy in my hands is slightly better. It's a little easier to write longhand and to type. I can tell because I'm not watching my fingers or using the Backspace key as often. But my balance actually seems worse lately and I can't tell that there's any improvement in my feet and legs. Darn!
Dr. Wendy sounds disappointed that I haven't seen a bigger improvement, but she's grateful that it's not getting worse so we'll continue the reduced dosage.
Visit with Dr. Wendy, draw blood work, three anti-nausea medications, Adcetris, and two hours later I'm out of there.
A CT/CAT scan is scheduled for Monday, February 11. Hopefully, it's great news--no more cancer; and we can be done with Adcetris for at least 7-10 more years. That's what I'm hoping for and what would qualify for "this treatment exceeding all expectations."
If it continues as well as it has been and the peripheral neuropathy eases up, the rest of the doses should be no problem.
Although, if I'm honest, ever since my last appointment and the fact that Dr. Wendy can no longer feel the largest tumor, my hope is that we'll schedule scans in the next three weeks (normal procedure after every two doses, so it's time again), and those scans will show no more cancer.
Not a lot to report today, although I do think the peripheral neuropathy in my hands is slightly better. It's a little easier to write longhand and to type. I can tell because I'm not watching my fingers or using the Backspace key as often. But my balance actually seems worse lately and I can't tell that there's any improvement in my feet and legs. Darn!
Dr. Wendy sounds disappointed that I haven't seen a bigger improvement, but she's grateful that it's not getting worse so we'll continue the reduced dosage.
Visit with Dr. Wendy, draw blood work, three anti-nausea medications, Adcetris, and two hours later I'm out of there.
A CT/CAT scan is scheduled for Monday, February 11. Hopefully, it's great news--no more cancer; and we can be done with Adcetris for at least 7-10 more years. That's what I'm hoping for and what would qualify for "this treatment exceeding all expectations."
Sunday, January 6, 2013
Fast and Testimony Meeting
During the prelude music and start of Sacrament Meeting, I'm contemplating on how good I feel for going through my fifth regimen of chemo. And I realize that my rather foreign pessimistic outlook of late is gone. I no longer feel so dark inside, like I'm fighting a losing battle. Sure, the next instance might kill me, but I might have a long time before the lymphoma is back. I have hope again. These are truly amazing discoveries!
And, as usual, I start scanning the congregation and reflecting on how many individuals in our ward that I feel truly supported by. I love these people and there's way too many to list.
A few things definitely stand out though: purple flowers planted in our flower beds by the Mia Maids, a large container filled with purple flowers from Jana, purple flowers and a cuddly blanket from Sandy, a very touching note from John and an equally touching post/email from Jennifer, and a beautiful chest of notes from lots of people and delivered by Maddie on a night when everything seemed really black and hopeless.
Suddenly, I'm overwhelmed by all of the love and support that I feel. All of those prayers are why this regimen is treating me so well so far. I know it. It's a great tender and miraculous mercy from our ward members who are definitely acting as the Savior's hands here on the earth.
Thank you all. I'm truly touched and grateful!
And, as usual, I start scanning the congregation and reflecting on how many individuals in our ward that I feel truly supported by. I love these people and there's way too many to list.
A few things definitely stand out though: purple flowers planted in our flower beds by the Mia Maids, a large container filled with purple flowers from Jana, purple flowers and a cuddly blanket from Sandy, a very touching note from John and an equally touching post/email from Jennifer, and a beautiful chest of notes from lots of people and delivered by Maddie on a night when everything seemed really black and hopeless.
Suddenly, I'm overwhelmed by all of the love and support that I feel. All of those prayers are why this regimen is treating me so well so far. I know it. It's a great tender and miraculous mercy from our ward members who are definitely acting as the Savior's hands here on the earth.
Thank you all. I'm truly touched and grateful!
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