I had bloodwork done Sunday and Monday. All was well. Then today the oncologist found 11% leukemia blasts. That means I am going inpatient for high dose chemo again. They have to get me into remission before they can proceed with the lymphocyte infusion.
No one is immune to hardships, and Jesus heals. That was my take away from General Conference last weekend, from The Church of Jesus Christ of Latter-Day-Saints.
Wednesday, October 10, 2018
Saturday, September 22, 2018
I made a promise.
Back in June, when I wanted to die, and when even my husband was praying that God would relieve my suffering... I made a promise.
That terrible week my brother came and spent the night at the hospital. He texted my family and told them to come, because “with every breath I was struggling for life”. If you know my brother at all you know he is not at all dramatic. My siblings all came at great sacrifice... And that was a turning point for me... and for all of us. They fasted and we each committed to give our lives more fully to God.
In my heart and mind, I shifted gears. I was hoping to die.. and I thought, when I die, I will be with my grandma and aunts... helping my family in any way that I can. The shift was a realization that I can do the same thing on this side and still be my son’s mommy and my husband’s wifey. Once that clicked for me, and my family joined together in a fast... and my dad gave me the most amazing blessing... and my siblings made the same commitment in their own ways, I knew I was staying.
So now I’m here wondering how to fulfill that commitment... how to more fully do God’s will.
And then, yesterday I heard Immaculee’ Ilibigiza speak at the Doterra convention. (I streamed it from home) She is a catholic who survived the Rwanda genocide... she hid in a 3’x5’ bathroom with 8 other women for three months. She wrote a book called Left to Tell, that became a NY times best seller in it’s first week. Anyways, through her experience she read the Bible, and learned to forgive the people who slaughtered who family, and how to listen to God’s voice... and how to live a life of LOVE.
When she was in the refugee camp, sleeping under the stars with no posesions, and very little food, she would wander the camp looking for ways to help and give people love. At night, under the stars, she would pray, and report her offering of love and service for the day...and it was enough. She said she had nothing to give, and yet, she still could give the most important thing, love.
Listening to her I realized, I know how to keep my commitment. I can love. I can do that. It’s the great commandment... I can listen attentively when normally I wouldn’t. I can ask for opportunities to love... and I can pray at night and report that I did my best... sometimes I won’t follow through perfectly, but sometimes I will.
I read this verse tonight, and it brought me to tears... I think it is how I feel about my life right now. Beauty for ashes. I want to be that tree.
Isaiah 61:3 To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the Lord, that he might be glorified
That terrible week my brother came and spent the night at the hospital. He texted my family and told them to come, because “with every breath I was struggling for life”. If you know my brother at all you know he is not at all dramatic. My siblings all came at great sacrifice... And that was a turning point for me... and for all of us. They fasted and we each committed to give our lives more fully to God.
In my heart and mind, I shifted gears. I was hoping to die.. and I thought, when I die, I will be with my grandma and aunts... helping my family in any way that I can. The shift was a realization that I can do the same thing on this side and still be my son’s mommy and my husband’s wifey. Once that clicked for me, and my family joined together in a fast... and my dad gave me the most amazing blessing... and my siblings made the same commitment in their own ways, I knew I was staying.
So now I’m here wondering how to fulfill that commitment... how to more fully do God’s will.
And then, yesterday I heard Immaculee’ Ilibigiza speak at the Doterra convention. (I streamed it from home) She is a catholic who survived the Rwanda genocide... she hid in a 3’x5’ bathroom with 8 other women for three months. She wrote a book called Left to Tell, that became a NY times best seller in it’s first week. Anyways, through her experience she read the Bible, and learned to forgive the people who slaughtered who family, and how to listen to God’s voice... and how to live a life of LOVE.
When she was in the refugee camp, sleeping under the stars with no posesions, and very little food, she would wander the camp looking for ways to help and give people love. At night, under the stars, she would pray, and report her offering of love and service for the day...and it was enough. She said she had nothing to give, and yet, she still could give the most important thing, love.
Listening to her I realized, I know how to keep my commitment. I can love. I can do that. It’s the great commandment... I can listen attentively when normally I wouldn’t. I can ask for opportunities to love... and I can pray at night and report that I did my best... sometimes I won’t follow through perfectly, but sometimes I will.
I read this verse tonight, and it brought me to tears... I think it is how I feel about my life right now. Beauty for ashes. I want to be that tree.
Isaiah 61:3 To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the Lord, that he might be glorified
Friday, September 14, 2018
Reality bites sometimes
Hey guys. I got the results from a bone marrow biopsy that I had last week. At first look, my marrow is clean... but deeper they found leukemia cells. A very small trace amount. That is WAY better than a relapse, but still a reality check. We are about to proceed with phase two of this fight.
The mold that caused my esophagus fistula is hopefully gone. We stopped the antifungal medication yesterday... because the anti fungal medication doesn't work well with the chemo agent... and it takes 24 days to get the antifungal med out of my system...
Also. My body isn't in a position to fight a full blown cancer relapse. Steroids can cause the mold to grow at super speed.... and often when fighting cancer steroids are nessesary when blood counts get super low...and by the way, I looked the mold up last night. People that get it have a 20% survival rate. That means that only 2 people out of 10 live to tell the tale. I'm a survivor ya'all... an anomaly.
So... the mold CANT make a comeback... and the leukemia can't make a comeback..(correction... they can, but either scenario could REALLY shake things up in a bad way) I can't fight both at the same time... and I'm still healing from surgery... and honestly, if I had another cancer relapse, we would be in a "tight spot". That's what my doc said yesterday.
In a few months I will probably need some consolidation chemo, and then they will give me more of Mandy's cells... to boost the transplant I had 5 years ago. I don't know what a couple of months means... it probably just means as soon as I can physically handle the procedure.
I'm slightly scared. I want to think this is over and that it will only be progress from this point forward. I need you guys again.
Will you fast for me again? Will you amp up your prayers again..
This is scene two of "I will survive".
Friday, August 24, 2018
a little bit of the horror story side of this miracle that is my life.
So much has happened since I last updated the blog. As you probably know, chemotherapy kills the immune system. In early May I was given a high dose chemo regimen called H.A.M. It effectively put the aggressive leukemia in remission. One common side effect of H.A.M. is mucositus, and I had a bad case of it. The combination of no white blood cells, lots of moisture, and an already weak throat, created the perfect storm for a rare fungal infection. This infection burned a hole in my esophagus and trachea the size of a silver dollar. The hole was just above my vocal cords.
I knew I could not eat even though my doctors and nurses were encouraging me to do so. A tiny bit of pudding sent me into a coughing fit. One night I chewed ice and spit it into another cup. As I did this I pretended I was at the SLC farmers market chewing on ice from homemade lemonade. I must have drank/ate some ice in a half way sleep state. The next morning was a nightmare. I was sedated, but still slightly aware of what was happening around me... My awareness bounced back and forth b/w reality and nightmare. I could not tell which was which. I didn't know what was happening... If you told me I had been abducted by aliens and they were performing experiments on me, I would have believed you. Something simple, like getting a catheter and a breathing tube are a lot less traumatic, if your conscious and subconscious knows what is happening, or if you are completely out. Sunday night they discovered that my lungs were filled with 40% fluid. Monday was the nightmare day. I actually prayed that day that I would transition to life on the other side. I was so scared and miserable. When I finally was aware enough to communicate, I sat up and crossed my arms in front of my body to tell the nurse, "NO MORE!" She was a "polite" jerk about it. I wrote a message to them, "I have been poked and prodded all day. Enough. Stop. No more." They left me alone the rest of Monday. Tuesday they convinced me to agree to a scope. Under sedation the doctor investigated through my mouth, and discovered the hole. I remember the look on his face when I came to. They transferred me to the ICU in Murray that day... the big hospital.
a few days later my new doctor, Dr. Griffin, a thoracic surgeon, inserted two tubes in my belly. One goes to my intestines so that I can receive food and medicine. The other is larger and goes to my stomach. Dr. G wanted to give himself a way to get to my esophagus going from underneath.... in case he wouldn’t be able access the esophagus through my mouth. The night after that surgery I was in so much pain. I was still intubated, and my entire belly HURT, especially at the sites where the tubes were placed. As soon as anesthesia wore off enough for me to scribble, I wrote on a paper, "PAIN!!" My aunt was with me. She's great, but that night she aspired to a new level of greatness. She sat next to me all night. I coughed at one point and the pain in my stomach was beyond anything... and after I asked she knelt beside my bed and prayed that I wouldn't cough again... and because of her prayer, I knew I wouldn't... and I didn't. Seriously. That was a hard night for me, there was no sleep.
After that, I waited in the hospital, receiving food through the tube in my stomach, gaining weight and strength, so I could be strong enough for major surgery. My whole family came to Utah to be with me. They thought I was going to die... and honestly, I felt that I might. In fact I wanted to, because I was so miserable...I thought, other's have died after much less than this... so I searched my mind for a woman to replace me, and I realized my son and husband need me. So, I made the choice to stay.
My family, and over a hundred people fasted for me that week. We begged God for a healing miracle... whether it be through miraculous healing, or skilled surgeons, and many small miracles along the way. My Grandpa Ellis had a similar experience 20-30 years ago. Long story short, he was hospitalized with a hole in his esophagus. All of his children traveled to Texas, fasted and gave him a priesthood blessing. The next day when he went in for surgery, the hole was gone. He was healed. He promised at that time to serve with all he had to give. I wanted a repeat of my Grandpa's miracle, so I have made that promise too. At first I thought it would be great to join my aunts and grandmother on the other side... that I would be an angle in constant service... then I realized I can do that work on this side. Im not sure how to achieve this sort of amazingness, but I have a few good examples.
The hole in my esophagus and trachea was so large that my two really amazing surgeons performed a "muscle flap surgery". They lifted my left breast and extracted muscle tissue from my pectoral muscle. That muscle remains attached, and it was folded and stuffed into my neck. The muscle was then wrapped around my trachea covering the large hole. They also placed a large tube from my nose to my stomach. They anticipated that scar tissue would form around the tube to fill in the gaps on the esophagus side. I was in the operating room for about eight hours.
After the big surgery, I was in rough shape. I was sedated, and Nate stayed with me. He thought he was watching me die that night. My body was septic from the fungal infection. My doctor told me today (2 months later) that cutting that fungal infection out of my throat opened pandoras box and shocked my entire body with the infection. He said that when people are septic like that, they can only give fluids and wait. Today he told me that I have proven myself a survivor.
My surgeons told Nate after the surgery that it could go either way... As I came out of sedation, Nate and I were talking for about an hour. The first and only thing my conscious remembers from that conversation was Nate telling me if I wanted to choose to die, that he would be ok. He was watching me suffer a lot... but that statement totally confused me... because I didn't remember the whole conversation we had already had. Why did Nate tell me it was ok if I died? He left and I kept asking my dad if the surgery worked. I had no idea that my body was so sick... I thought that if I didn't die in the operating room that I made it. Well... a day or so later my fever broke and the rest of my vitals normalized as well. They un-intubated me, and I started getting out of bed, with lots of assistance, to use the toilet.
Then... I waited. Healed and waited. I remember my dad saying, "Why can't it be me?" It is so hard for me to watch the people I love suffer when I am sick. Back then there was little relief... aside from the foot rubs friends and family gave me every day. No matter how many pillows I had, I still couldn't sleep well at night. I hated night, because it was long... I often just waited for sunrise.
Nate was so so so sad. He spent most of his time making sure our little guy was ok. Im glad he had family close by to help him through some of the hardest times. This week little N admitted that he prayed every night that I would not die. My little 5 year old shouldn't have to worry if his mama will ever come home again. I am so grateful I get to walk him to his first day of kindergarten next week.
There is more to this story that I will write about in the future... This is an attempt to get this stuff down before I forget it all. I have already forgotten so much. Seriously... so much of May, June and July are a big haze. What I went through was a big deal. Today Dr. Diaz told me that what I went through, the complications, are about as bad as it gets. Its validating, and nice to think that the rest of this should be easy since I've already survived the hard stuff.
I knew I could not eat even though my doctors and nurses were encouraging me to do so. A tiny bit of pudding sent me into a coughing fit. One night I chewed ice and spit it into another cup. As I did this I pretended I was at the SLC farmers market chewing on ice from homemade lemonade. I must have drank/ate some ice in a half way sleep state. The next morning was a nightmare. I was sedated, but still slightly aware of what was happening around me... My awareness bounced back and forth b/w reality and nightmare. I could not tell which was which. I didn't know what was happening... If you told me I had been abducted by aliens and they were performing experiments on me, I would have believed you. Something simple, like getting a catheter and a breathing tube are a lot less traumatic, if your conscious and subconscious knows what is happening, or if you are completely out. Sunday night they discovered that my lungs were filled with 40% fluid. Monday was the nightmare day. I actually prayed that day that I would transition to life on the other side. I was so scared and miserable. When I finally was aware enough to communicate, I sat up and crossed my arms in front of my body to tell the nurse, "NO MORE!" She was a "polite" jerk about it. I wrote a message to them, "I have been poked and prodded all day. Enough. Stop. No more." They left me alone the rest of Monday. Tuesday they convinced me to agree to a scope. Under sedation the doctor investigated through my mouth, and discovered the hole. I remember the look on his face when I came to. They transferred me to the ICU in Murray that day... the big hospital.
a few days later my new doctor, Dr. Griffin, a thoracic surgeon, inserted two tubes in my belly. One goes to my intestines so that I can receive food and medicine. The other is larger and goes to my stomach. Dr. G wanted to give himself a way to get to my esophagus going from underneath.... in case he wouldn’t be able access the esophagus through my mouth. The night after that surgery I was in so much pain. I was still intubated, and my entire belly HURT, especially at the sites where the tubes were placed. As soon as anesthesia wore off enough for me to scribble, I wrote on a paper, "PAIN!!" My aunt was with me. She's great, but that night she aspired to a new level of greatness. She sat next to me all night. I coughed at one point and the pain in my stomach was beyond anything... and after I asked she knelt beside my bed and prayed that I wouldn't cough again... and because of her prayer, I knew I wouldn't... and I didn't. Seriously. That was a hard night for me, there was no sleep.
After that, I waited in the hospital, receiving food through the tube in my stomach, gaining weight and strength, so I could be strong enough for major surgery. My whole family came to Utah to be with me. They thought I was going to die... and honestly, I felt that I might. In fact I wanted to, because I was so miserable...I thought, other's have died after much less than this... so I searched my mind for a woman to replace me, and I realized my son and husband need me. So, I made the choice to stay.
My family, and over a hundred people fasted for me that week. We begged God for a healing miracle... whether it be through miraculous healing, or skilled surgeons, and many small miracles along the way. My Grandpa Ellis had a similar experience 20-30 years ago. Long story short, he was hospitalized with a hole in his esophagus. All of his children traveled to Texas, fasted and gave him a priesthood blessing. The next day when he went in for surgery, the hole was gone. He was healed. He promised at that time to serve with all he had to give. I wanted a repeat of my Grandpa's miracle, so I have made that promise too. At first I thought it would be great to join my aunts and grandmother on the other side... that I would be an angle in constant service... then I realized I can do that work on this side. Im not sure how to achieve this sort of amazingness, but I have a few good examples.
The hole in my esophagus and trachea was so large that my two really amazing surgeons performed a "muscle flap surgery". They lifted my left breast and extracted muscle tissue from my pectoral muscle. That muscle remains attached, and it was folded and stuffed into my neck. The muscle was then wrapped around my trachea covering the large hole. They also placed a large tube from my nose to my stomach. They anticipated that scar tissue would form around the tube to fill in the gaps on the esophagus side. I was in the operating room for about eight hours.
After the big surgery, I was in rough shape. I was sedated, and Nate stayed with me. He thought he was watching me die that night. My body was septic from the fungal infection. My doctor told me today (2 months later) that cutting that fungal infection out of my throat opened pandoras box and shocked my entire body with the infection. He said that when people are septic like that, they can only give fluids and wait. Today he told me that I have proven myself a survivor.
My surgeons told Nate after the surgery that it could go either way... As I came out of sedation, Nate and I were talking for about an hour. The first and only thing my conscious remembers from that conversation was Nate telling me if I wanted to choose to die, that he would be ok. He was watching me suffer a lot... but that statement totally confused me... because I didn't remember the whole conversation we had already had. Why did Nate tell me it was ok if I died? He left and I kept asking my dad if the surgery worked. I had no idea that my body was so sick... I thought that if I didn't die in the operating room that I made it. Well... a day or so later my fever broke and the rest of my vitals normalized as well. They un-intubated me, and I started getting out of bed, with lots of assistance, to use the toilet.
Then... I waited. Healed and waited. I remember my dad saying, "Why can't it be me?" It is so hard for me to watch the people I love suffer when I am sick. Back then there was little relief... aside from the foot rubs friends and family gave me every day. No matter how many pillows I had, I still couldn't sleep well at night. I hated night, because it was long... I often just waited for sunrise.
Nate was so so so sad. He spent most of his time making sure our little guy was ok. Im glad he had family close by to help him through some of the hardest times. This week little N admitted that he prayed every night that I would not die. My little 5 year old shouldn't have to worry if his mama will ever come home again. I am so grateful I get to walk him to his first day of kindergarten next week.
There is more to this story that I will write about in the future... This is an attempt to get this stuff down before I forget it all. I have already forgotten so much. Seriously... so much of May, June and July are a big haze. What I went through was a big deal. Today Dr. Diaz told me that what I went through, the complications, are about as bad as it gets. Its validating, and nice to think that the rest of this should be easy since I've already survived the hard stuff.
Saturday, May 12, 2018
Tumor blasts down, along with everything else
so... that’s good news. No cancer cells in my blood. It is still possible that there could be some in my bone marrow. We will wait until my other counts come up before doing another bone marrow biopsy. That could take a while. A few weeks at least.
Right now I’m feeling the effects of cytarabian. My feet are BURNING. They gave me some pain killers and the pain is now tolerable. I always hate the “rate your pain” scale.... but earlier today I said 12 out of 10.
One important way to get your counts up is by excersizing. Tricky with these feet.
My potty is right next to my bed because I can’t go any further than 1 step away.
I just pray that my numbers come up and I can be freed from this pain.
And when I say numbers I mean, white blood cells, neutrafils, red blood cells and platelets.
If you need something specific to payer for, it’s that my counts come up... which will help heal my foot pain... and still that my doctors will be inspired. There are a few important decisions down the road that are up in the air.
Thanks all.
Much love!
Right now I’m feeling the effects of cytarabian. My feet are BURNING. They gave me some pain killers and the pain is now tolerable. I always hate the “rate your pain” scale.... but earlier today I said 12 out of 10.
One important way to get your counts up is by excersizing. Tricky with these feet.
My potty is right next to my bed because I can’t go any further than 1 step away.
I just pray that my numbers come up and I can be freed from this pain.
And when I say numbers I mean, white blood cells, neutrafils, red blood cells and platelets.
If you need something specific to payer for, it’s that my counts come up... which will help heal my foot pain... and still that my doctors will be inspired. There are a few important decisions down the road that are up in the air.
Thanks all.
Much love!
Tuesday, May 8, 2018
A letter i sent today...asking for apostolic intervention...because they are the closest to Jesus on this earth.
I Managed to get the email address to office of Bro Christofersons’s secretaries (I think)... This is the letter I sent... Hoping it makes it into his hands. It’s my favorite Pres. Monson story, because it is my President Monsonsory.
Dear Brethren,
I have crossed paths with a few of you, including Pres. Monson. I originally thought i would tell you about the time that ELDER Oaks held the door open from me at THE red IQUANA restaurant... and how i was so embarrassed that my co-worker wanted a picture with him, and he finally stood after his nice wife told him too …Or the time that I crossed paths with President Nelson as he left the temple arm in arm with his beautiful wife from the temple. They both radiated joy. As a 30 something single woman, at the time i wished for such a wonderful marriage.
I will tell this story about President Monson. In the 90s I was a rebellious teen, with a very unconventional Young Woman’s advisor. There was so much about her that didn’t measure up, but her testimony that she bore OFTEN did. She swore and had such a spunky “we can do anything” attitude.
She poured everything into our little young women’s group, and especially me. She was my best friend when I needed someone to help me though some yucky teen choices and their consequential whoas.
A regional conference was scheduled in HOUSTON in the mid 1990s. My sassy and unconventional YW advisor “just knew” if she could get us close enough, it would matter.
President Monson was the general authority speaking at the conference. It was being held at a basketball stadium near downtown. Sister Zogg picked 4 of us up at 5:00, so we would be first in line. And because it was her, we went along with the crazy idea. And with our French toast sticks and blankets we were...at 5:45, waiting for the gates to open.
When we arrived, there was a section roped off for the families of stake presidents. She and we walked past that barricade and took a seat. The whole time i was subconscious that “we didn’t belong there” and everyone knew it.
Then at the close of the meeting, as everyone was shuffling for an exit door, i watched Pre. Monson intently. He held my glance for a long long time... with such tenderness and love that i started to cry. The love of God literally shot through him to my heart.
He has a lifetime of amazing stories of “going to the rescue”, and that day it was my turn. I was the sheep that needed to be tended to, and he did it, and all it took was a loving gaze.
I didn’t change my experimental teenage ways for a while, but i had a testimony that God loved me, because i felt it through Pre. Monson. I sort of always hoped i could run into him again and tell him how much that mattered to me. I wished i could tell him that foundational love was a necessary prerequisite for the “badges of honor” I now ware.
I’m sealed to my sweet husband and son. They are staying with me (eternally)no matter what. Our son is now 5 year old, and always reminds us to love Heavenly Father and Jesus more (when we tell him we love him the most). He tells me about the angels he sees, and how they are here to help our whole family. He was 9 months old when we went through cancer treatment before.
I can't tell you how much i love my sweet life with them, and I’m not ready for it to end. I’m just not. If it did end now, i know i would go on and do the Lord’s will… I would join my grandmas in furthering the work of the lord on the other side…and I’m sure it would be exhilarating... i just hope i get about 50 more year of this mundane estate so i can be with them.
Anyways, can you all put my name on your temple prayer roll? My father-in-law Earl Maeser asked this of Elder Holland 5 years ago, and I know the added faith and prayers of God’s chosen prophets only helped me heal faster and better,
Thank you,
With gratitude and love,
Tanya Mae Maeser
And if anyone is ever in the neighbourhood, I’d love an apostolic blessing… and I realise you are all busy… but if I get a surprise one of these days my heart will be filled… and my family will remember it for generations,
THANKS AGAIN!
With so much gratitude and honor, and absolute loving devotion,
Tanya Maeser
And for the next 3 or so week - LDS Hospital on the 8th floor - room#E854
never say it cant happen to you
Nice Nate got me a Bluetooth keyboard for my iPad... and i feel like sitting up and not wishing to sleep through the yucky feeling... which the doctors and nurses are more than willing to help me with.
Last night my nurse was late coming to me and another nurse filled in her space for a moment. She had been changing another patients diaper. I promised that i would never make her change my diaper... never say never...
Yep, i was so sedated last night that after sitting on the toilet, i sat on another chair, in the bathroom and, ya, super gross. Luckily they kindly helped me shower... and ill probably trash those jemmies, even though they are my favorites. :(
Yep, i was so sedated last night that after sitting on the toilet, i sat on another chair, in the bathroom and, ya, super gross. Luckily they kindly helped me shower... and ill probably trash those jemmies, even though they are my favorites. :(
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