I am dictating this blog as Mark types it so I wouldn't get too far behind. It has been 17 days since the transplant and they call these "positive days" because your body is creating all new cells. Despite a few small feverish temperatures, I have done well and have been able to sit up at times watching the Black Friday sales on my laptop.
Aubri and her fiance, Bryan, were able to drive down from BYU for Thanksgiving. The family ate at Judy's house and I was able to use Skype to be there with them. I can honestly say that a half a bowl of Cheerios did not make the day my best Thanksgiving ever, but being able to Skype with the family helped. I really didn't have much of an appetite for anything other than Cheerios anyway.
Aubri was able to go through the Temple with family in preparation for her wedding in December. Aubri also had her bridal shower yesterday (Saturday) and I was able to use Skype to be there with them. I was able to watch her open her grown-up cooking "toys" now. The shower was beautiful and took a lot of work from family and friends. Even though I didn't get to spend a lot of time with Aubri and Bryan personally, it was good to know that they were here.
My mother, sisters, and Ward friends spent the week making my house germ and dust free for my return. They spent many hours removing draperies and any dust catchers, and having the carpets and air ducts cleaned. It may not be too long until I get to enjoy it.
Sunday, November 28, 2010
Sunday, November 14, 2010
100 Days and Counting!
I am Judy, Karen's sister. She has asked that I post her blog this week as she has been a little "hooked" up. I say that in the most literal of terms! Friday, Nov. 5, Karen entered the City Of Hope Cancer Center. This has become her home away from home for the next month. She truly couldn't be in better hands for what she is going through. We spent all day Friday visiting with a steady stream of all the Dr.'s, nurses, therapists, and dieticians who would be involved with her care. We were both so amazed at the time each person took to get to know her. As she said, "I think I'm the only person in this hospital". It was a great beginning to a long journey.
The Dr.'s and nurses are very proactive with every treatment. The first chemo drug (given Friday, Saturday, and Sunday nights) could cause seizures and so Karen spent Thursday before going in, downing 8 pills to help prevent this. (And it did.) She was hooked up 12 hours before the chemo began to anti-nausea medication and Benedryl to calm her and prevent a rash. These have become an on-going part of the many medications she is taking to prevent some of worst side-effects. Monday and Wednesday she endured two of the strongest chemo drugs that are ever given. Each were 20 times stronger than any she had been given before. Nausea began immediately and also extreme back pain. Morphine was given to try to ease the pain but increased her nausea. Karen never complains or carries on. She is amazing in every way in how she endures treatment after treatment. Here is a statement I know I will never hear again and could only hear it from Karen. As I was holding her bed pan she said, "throwing up with chemo isn't as bad as being sick. It's just part of the process."
As Thursday came and we celebrated Veteran's Day, I told Karen that she is my greatest and bravest hero! She is going to win this battle, I have no doubt. Your faith, prayers, and fasting are literally holding her up through this. As I went in Monday I hadn't had much sleep the night before and was so worried whether or not I could hold up for her. Through the day I felt the strength and energy I needed and even when she was resting I stayed awake and read. As I got in my car 12 hours later to drive home I almost collapsed with exhaustion! I got home and pondered on this and realized that there is strength with her in that room that had sustained me as well as her. She is certainly not fighting this battle alone. I was able to share that thought with her as I returned the next day. She feels that strength also.
Friday was Day 0- day of the stem cell transplant. Her son Mark and I were both there for this exciting event! We learned a few more amazing blessings that Karen has received. Because she was so successful in her stem cell harvest, it only took one time and 3 bags to collect the needed 2 million stem cells to do the infusion. Each bag takes about 5-6 minutes total from thawing to infusing. With only 3 bags, Karen's went really smooth and quickly. We found out that some other patients have taken up to 16 bags to retrieve the needed cells and their infusion can takes a few hours. It was amazing to watch as each bag was taken from the freezer, to thawing water, through the hands of 2 nurses and hooked up and into Karen. With each infusion she would feel the cold blood in her veins- it burned a little and made her cough. Then as soon as the bag was empty, the symptoms stopped. They had told her that she would emit a smell like creamed corn (from the preservative in the stem cells). It was true! She smelled of it all day long. I will never be able to open a can of creamed corn again without thinking of that day.
So, she began what is known as the 100 day count down to living close to normal again. It will take that long for all her cells to regenerate and for her body to be able to once again fight infection. I have learned that fighting cancer is not for the faint of heart or spirit. It is fought and won by the most determined, strong souls ever to live. In a quote from Elder Maxwell in his biography he said, "Sometimes the Lord hastens His work in our spiritual development by a compression of experiences... Sometimes the best people... have the worst experiences... because they are the most ready to learn." That is Karen. I can just see her choosing this experience for what she could learn:).
I will end with a Karen funny. Mark had come for a few hours one day (he comes for a few hours everyday and is a wonderful son!) and so I decided to go out shopping. We were whispering because Karen seemed to be in a deep sleep and a nurse was adding new meds to her IV. I asked Mark if he knew where Last Chance was. Out of her chemo coma Karen pipes in with "I know the address, it's 20th and Camelback". Mark and I just looked at each other and laughed. She is more on top of things with her chemo brain than I am on any given day! She is amazing!
This is a bag of her stem cells on their way into her!
The Dr.'s and nurses are very proactive with every treatment. The first chemo drug (given Friday, Saturday, and Sunday nights) could cause seizures and so Karen spent Thursday before going in, downing 8 pills to help prevent this. (And it did.) She was hooked up 12 hours before the chemo began to anti-nausea medication and Benedryl to calm her and prevent a rash. These have become an on-going part of the many medications she is taking to prevent some of worst side-effects. Monday and Wednesday she endured two of the strongest chemo drugs that are ever given. Each were 20 times stronger than any she had been given before. Nausea began immediately and also extreme back pain. Morphine was given to try to ease the pain but increased her nausea. Karen never complains or carries on. She is amazing in every way in how she endures treatment after treatment. Here is a statement I know I will never hear again and could only hear it from Karen. As I was holding her bed pan she said, "throwing up with chemo isn't as bad as being sick. It's just part of the process."
As Thursday came and we celebrated Veteran's Day, I told Karen that she is my greatest and bravest hero! She is going to win this battle, I have no doubt. Your faith, prayers, and fasting are literally holding her up through this. As I went in Monday I hadn't had much sleep the night before and was so worried whether or not I could hold up for her. Through the day I felt the strength and energy I needed and even when she was resting I stayed awake and read. As I got in my car 12 hours later to drive home I almost collapsed with exhaustion! I got home and pondered on this and realized that there is strength with her in that room that had sustained me as well as her. She is certainly not fighting this battle alone. I was able to share that thought with her as I returned the next day. She feels that strength also.
Friday was Day 0- day of the stem cell transplant. Her son Mark and I were both there for this exciting event! We learned a few more amazing blessings that Karen has received. Because she was so successful in her stem cell harvest, it only took one time and 3 bags to collect the needed 2 million stem cells to do the infusion. Each bag takes about 5-6 minutes total from thawing to infusing. With only 3 bags, Karen's went really smooth and quickly. We found out that some other patients have taken up to 16 bags to retrieve the needed cells and their infusion can takes a few hours. It was amazing to watch as each bag was taken from the freezer, to thawing water, through the hands of 2 nurses and hooked up and into Karen. With each infusion she would feel the cold blood in her veins- it burned a little and made her cough. Then as soon as the bag was empty, the symptoms stopped. They had told her that she would emit a smell like creamed corn (from the preservative in the stem cells). It was true! She smelled of it all day long. I will never be able to open a can of creamed corn again without thinking of that day.
So, she began what is known as the 100 day count down to living close to normal again. It will take that long for all her cells to regenerate and for her body to be able to once again fight infection. I have learned that fighting cancer is not for the faint of heart or spirit. It is fought and won by the most determined, strong souls ever to live. In a quote from Elder Maxwell in his biography he said, "Sometimes the Lord hastens His work in our spiritual development by a compression of experiences... Sometimes the best people... have the worst experiences... because they are the most ready to learn." That is Karen. I can just see her choosing this experience for what she could learn:).
I will end with a Karen funny. Mark had come for a few hours one day (he comes for a few hours everyday and is a wonderful son!) and so I decided to go out shopping. We were whispering because Karen seemed to be in a deep sleep and a nurse was adding new meds to her IV. I asked Mark if he knew where Last Chance was. Out of her chemo coma Karen pipes in with "I know the address, it's 20th and Camelback". Mark and I just looked at each other and laughed. She is more on top of things with her chemo brain than I am on any given day! She is amazing!
This is a bag of her stem cells on their way into her!
Thursday, November 4, 2010
We're Off!
The news is all good from my Dr. visit Tuesday. I am in remission and cancer free and able to move forward. Following our short visit with the Dr., we spent 2 hours with the consent nurse signing paperwork describing the bad effects from the chemo and transplant. Mark asked the key question as to why we do this if I am in remission? She responded that the Dr. feels there is a likely chance that it will reoccur and this is the only way for a 60-70% cure. I realized today that I could stop all this and start living again, but it would be a life of fear living from petscan to petscan to see if the cancer had returned. I believe that’s why I have felt guided to make this complete journey.
Mark then asked how they know they got good stem cells and not cancerous ones again. They believe the stem cells they took are good ones, because the bad ones are too weak to make it through the process. They are going to totally wipe me out with their chemo so my body cannot make blood until they reinfuse the stem cells on Friday, the 12th. Then they watch me closely for the next 9-11 days when the wbc finally start to increase, followed by the red blood cells, and last the platelets. During this time they will be giving me transfusions of red cells and platelets, and shots to help the wbc, but I will be very prone to infection, so they will be watching that closely.
I will be visually impaired, confused, intoxicated, and experience amnesia much of the time, but hey, maybe that will help me endure the process. Beyond that . . . you don’t want to know. It will truly be a time when I will be living close to the veil and feeling of the Lord’s strength sustaining me.
Final word has been given to start the chemo tomorrow so I will receive 3 different chemicals until Fri., the 12th, when my stems cells will be reinfused. I have 3 bags of stem cells. It’s a big process involving many people, and everything has to be ready to infuse once the bag is thawed, because it only has 10 min. to go in before the cells start dying. Then they wait a little while and continue with the other 2 bags. It will be cold and because of the preservative they are in, I will smell like cream corn.
They anticipate that I will be in the hospital until the first part of Dec., then home with 24/7 care for 2 weeks, barring no bad infections.
During my last ‘free’ days this week, my sisters bought me lunch, both being meals that I had been craving and even envisioned during my petscan because I was so hungry, (fries and a chocolate shake from In and Out with chicken nuggets from Chick filet, and Sbarros spinach-mushroom pizza), walked around the lake at the Riparian Preserve, and sat under the trees at my favorite water spot there. Last night I watched the 1953 movie, The Robe, with my mother, since I had just finished the book, but felt like it was the Reader’s Digest condensed version, leaving out the best parts. I was glad I had read the book first because it was so much better and spiritually uplifting. I will end the day on a fun note by watching Toy Story 3 tonight.
I have mixed feelings today, with anticipation being the strongest. I am ready to start this final lap and calm about everything overall, but pacing, just the same. Once I start, I will turn my body and spirit over to the Lord and know that He will be close. I truly feel strength from the love, prayers, and support from all my family and friends.
Mark then asked how they know they got good stem cells and not cancerous ones again. They believe the stem cells they took are good ones, because the bad ones are too weak to make it through the process. They are going to totally wipe me out with their chemo so my body cannot make blood until they reinfuse the stem cells on Friday, the 12th. Then they watch me closely for the next 9-11 days when the wbc finally start to increase, followed by the red blood cells, and last the platelets. During this time they will be giving me transfusions of red cells and platelets, and shots to help the wbc, but I will be very prone to infection, so they will be watching that closely.
I will be visually impaired, confused, intoxicated, and experience amnesia much of the time, but hey, maybe that will help me endure the process. Beyond that . . . you don’t want to know. It will truly be a time when I will be living close to the veil and feeling of the Lord’s strength sustaining me.
Final word has been given to start the chemo tomorrow so I will receive 3 different chemicals until Fri., the 12th, when my stems cells will be reinfused. I have 3 bags of stem cells. It’s a big process involving many people, and everything has to be ready to infuse once the bag is thawed, because it only has 10 min. to go in before the cells start dying. Then they wait a little while and continue with the other 2 bags. It will be cold and because of the preservative they are in, I will smell like cream corn.
They anticipate that I will be in the hospital until the first part of Dec., then home with 24/7 care for 2 weeks, barring no bad infections.
During my last ‘free’ days this week, my sisters bought me lunch, both being meals that I had been craving and even envisioned during my petscan because I was so hungry, (fries and a chocolate shake from In and Out with chicken nuggets from Chick filet, and Sbarros spinach-mushroom pizza), walked around the lake at the Riparian Preserve, and sat under the trees at my favorite water spot there. Last night I watched the 1953 movie, The Robe, with my mother, since I had just finished the book, but felt like it was the Reader’s Digest condensed version, leaving out the best parts. I was glad I had read the book first because it was so much better and spiritually uplifting. I will end the day on a fun note by watching Toy Story 3 tonight.
I have mixed feelings today, with anticipation being the strongest. I am ready to start this final lap and calm about everything overall, but pacing, just the same. Once I start, I will turn my body and spirit over to the Lord and know that He will be close. I truly feel strength from the love, prayers, and support from all my family and friends.
Monday, November 1, 2010
Did I Pass?
The week before Halloween was full of interesting tests for me. There were vampires lurking at every corner of that hospital. Luckily most of the blood they needed was acquired through my port lines. On Tuesday I had a CT scan where I had to drink that lovely, thick white goop. I think that is the main reason they ask you to fast before, so it becomes somewhat tolerable on an empty stomach. That test was followed by a heart scan to see how my heart has held up to the chemo so far.
Wednesday I fasted again for the whole-body Pet scan. This will determine what is left of the cancer, if any. The techs were really trying to make it a good experience for me even though they strapped me to the table and put tape across my forehead to hold it in place. I told them their drink tasted like a Dairy Queen treat compared to the day before. This was one test where I have practiced enough of the mind over matter ‘Yoda’ stuff that when I got itches during the 30 minutes, I told myself it really didn’t itch.
Thursday was my pulmonary lung test to see how my lungs will hold up to their chemo. I was in a small decompression chamber for an hour doing different kinds of breathing. At the end of these tests, all they do is thank you and smile and not give a hint of how you did. Only the Dr. can tell you about them.
So, tomorrow is the big Dr. meeting where she will go over the tests with me to see what the next plan is. Hopefully it is to move forward with their chemo and then the transplant. I can tell my body is stronger because I am able to walk on the treadmill longer each day, and I feel like starting the day in my shoes instead of my slippers. My appetite is good and I have gained weight rather than lose it.
I met an elevator angel on the first day I was there last week. We were in the patient elevator together, but she was being wheeled in a bed. She was older, but had a twinkle in her eyes. I knew because of her duck mask and cap that she was ‘one of us’, so I said I was going to give her a clap. The elevator man told me she was going home the next day. I told her that deserved two claps. She said, “Yes, it had been 24 days!”
The next day I met her again, waiting for the same elevator, only this time she was dressed and in a wheelchair pushed by her husband. I got excited for her again as we talked about her going home. In the elevator she turned to me and said, “It’s not as bad as you think, they take good care of you.” Then she looked at me and said, “keep up your spirits!” It was just what I needed to hear that day!
From there I went to the waiting room, where I saw a younger gal going into a room and saying hello to the receptionists, like she was familiar with the place. While she was making an appt. I noticed how good she looked with her long hair, make-up, and overall look. I asked her if she had been through all this? “Yes,” she said, “62 days!” Wow, I said, you look great. (They had told us it would probably take about 100 days from transplant to get back to life, and I was thinking, wow, if she can do it, I can, too.) She went to get ice and when she returned I asked her what kind of cancer? She told me leukemia and I asked if she used her own cells? “Oh,” she said, “it’s my husband and he’s in there having an IV. He has his good days and bad.” Well, that burst my bubble, but it was fun to laugh about later.
My son, Mark, sent me the following email after the caregiver class: “So Mom, I forgot to tell you that they told us in the caregiver class that once you are released you are not able to receive any more tattoos or body piercings. I know you had had your eye on a tattoo of Sully from Dr. Quinn for your right ankle, but now it will have to wait! Oh the things cancer makes you give up.....”
Oh, but the things I have gained, also: a closeness to my Heavenly Father and Savior that only comes at hard times like this, a greater love and bond with my family members, a greater love for my friends and everyone who is praying for me and giving me of their strength and help. It really is becoming a sacred time for me.
Wednesday I fasted again for the whole-body Pet scan. This will determine what is left of the cancer, if any. The techs were really trying to make it a good experience for me even though they strapped me to the table and put tape across my forehead to hold it in place. I told them their drink tasted like a Dairy Queen treat compared to the day before. This was one test where I have practiced enough of the mind over matter ‘Yoda’ stuff that when I got itches during the 30 minutes, I told myself it really didn’t itch.
Thursday was my pulmonary lung test to see how my lungs will hold up to their chemo. I was in a small decompression chamber for an hour doing different kinds of breathing. At the end of these tests, all they do is thank you and smile and not give a hint of how you did. Only the Dr. can tell you about them.
So, tomorrow is the big Dr. meeting where she will go over the tests with me to see what the next plan is. Hopefully it is to move forward with their chemo and then the transplant. I can tell my body is stronger because I am able to walk on the treadmill longer each day, and I feel like starting the day in my shoes instead of my slippers. My appetite is good and I have gained weight rather than lose it.
I met an elevator angel on the first day I was there last week. We were in the patient elevator together, but she was being wheeled in a bed. She was older, but had a twinkle in her eyes. I knew because of her duck mask and cap that she was ‘one of us’, so I said I was going to give her a clap. The elevator man told me she was going home the next day. I told her that deserved two claps. She said, “Yes, it had been 24 days!”
The next day I met her again, waiting for the same elevator, only this time she was dressed and in a wheelchair pushed by her husband. I got excited for her again as we talked about her going home. In the elevator she turned to me and said, “It’s not as bad as you think, they take good care of you.” Then she looked at me and said, “keep up your spirits!” It was just what I needed to hear that day!
From there I went to the waiting room, where I saw a younger gal going into a room and saying hello to the receptionists, like she was familiar with the place. While she was making an appt. I noticed how good she looked with her long hair, make-up, and overall look. I asked her if she had been through all this? “Yes,” she said, “62 days!” Wow, I said, you look great. (They had told us it would probably take about 100 days from transplant to get back to life, and I was thinking, wow, if she can do it, I can, too.) She went to get ice and when she returned I asked her what kind of cancer? She told me leukemia and I asked if she used her own cells? “Oh,” she said, “it’s my husband and he’s in there having an IV. He has his good days and bad.” Well, that burst my bubble, but it was fun to laugh about later.
My son, Mark, sent me the following email after the caregiver class: “So Mom, I forgot to tell you that they told us in the caregiver class that once you are released you are not able to receive any more tattoos or body piercings. I know you had had your eye on a tattoo of Sully from Dr. Quinn for your right ankle, but now it will have to wait! Oh the things cancer makes you give up.....”
Oh, but the things I have gained, also: a closeness to my Heavenly Father and Savior that only comes at hard times like this, a greater love and bond with my family members, a greater love for my friends and everyone who is praying for me and giving me of their strength and help. It really is becoming a sacred time for me.
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