Conversation between my donor and I....
Me: "I might get your stem cells in me and pick up all your crazy personality traits."
My Donor: "Crazy? You might experience some side effects of brief unimaginable awesomeness every so often if you get any of my traits."
So, for those of you who know my family.... which sibling is it? Not hard to guess huh? My brother Eric. Of all my siblings I though would match me, for some reason, I didn't think him. I guess I should've been a lot nicer to him growing up huh? Maybe I shouldn't have accidentally broken his arm. But, he was a fun play mate as a kid and I loved his Christmas gifts every year so I usually helped him play with them. The laser tag set was my favorite.
So, Eric will save my life. Later I'll joke about how having his immune system I can now blame him every time I get sick. I'm sure we'll find many other jokes too but for now, Just thank you. For your time, for your blood, for love, for being willing to do this for me. Thank you Eric. In case I don't tell you often enough, I love you.
I'm afraid. I don't know how to explain it and all the "you're strong" and "you have so much support," although I love hearing those, they don't really help. I'm scared. I'm afraid of being sick, of chemo, I'm afraid of being weak, or losing my hair, and I'm afraid that it will go wrong. And for some reason, I can't shake it. I know so many who have been through worse, who are sick for years and years, who have more chemo and I want to ask them, when did they stop being afraid?
John 14:27 Peace I leave with you, my peace I give unto you: not as the world giveth give I unto you. Let not your heart be troubled, neither let it be afraid.
Wednesday, July 29, 2015
Sunday, July 26, 2015
Poor Poor Pickles
My parents have a dog, named Pickles. She was limping around and since we love that stupid thing so much, they took her to the vet. Well, she came home all bandaged up, the top of her paw shaved off and hopefully whatever they think is stuck in there will come out. The thing is, the poor dog is bothered so much by that foot all she does is lick it, she's torn off every bandage they've put on and now she just licks the skin. I know what it's like, at least for me, to have something just never quite right. Even on my good days I never really feel good. I've forgotten what it feels like to feel normal. Unlike Pickles, however, no one yells at me when I lick my wounds.
I went shopping yesterday to buy more yoga pants, or pants I can wear in the hospital. I didn't think my 3 pair would do very well since laundry would be limited and I would rather not wear hospital clothes for 2 to 12 weeks. For the first time in a very long time, I fit into a Large.... Not and XL but a Large. I'm not sure I remember the last time I wore large anything. I've always been a bigger girl, even when I'm thin I'm big. According to my mom's scale I've lost 49 LBS since January. Which, probably means it's closer to 45 since her scale is off.
So, to change the subject a big let's talk about this bone marrow donor thing. Say you got a kidney transplant, when it doesn't "take" your immune system looks at that kidney and says hey, that is foreign, and your body attacks it. Well, in my case, I'm getting a whole new immune system. So what happens when that new immune system looks at my body and says, hey, that's foreign? It's called, Graft-Versus-Host Disease, or GVHD. This is what scares me, more than the hospital, more than the chemo, more than losing my hair.... These four little letters, GVHD. I don't want my body to reject itself. I don't want to be sick for a year while it gets use to something new. They will put me on immune suppressants which stops your immune system from fighting, so it doesn't fight your body, but that also means, it doesn't fight anything else either.
There are two for sure things I've learned in my life about trials though. 1. NEVER say it can't get worse than this. and 2. You never know what you can go through until you have to go through it. So, that's it, one day at a time, one infection at a time. I will take my good days that are never quite right until they are all good again! I think maybe Pickles will get better before I do, but for now, I'll worry about her. It's so annoying to have something not right with your body.
"There may be times when we have been hurt, when we are tired, when our lives seem dark and cold. There may be times that we cannot see any light on the horizon, and we may feel like giving up. If we are willing to believe, if we desire to believe, if we choose to believe than the Savior's teachings and example will show us the pathway forward."
~ L. Whitney Clayton
I went shopping yesterday to buy more yoga pants, or pants I can wear in the hospital. I didn't think my 3 pair would do very well since laundry would be limited and I would rather not wear hospital clothes for 2 to 12 weeks. For the first time in a very long time, I fit into a Large.... Not and XL but a Large. I'm not sure I remember the last time I wore large anything. I've always been a bigger girl, even when I'm thin I'm big. According to my mom's scale I've lost 49 LBS since January. Which, probably means it's closer to 45 since her scale is off.
So, to change the subject a big let's talk about this bone marrow donor thing. Say you got a kidney transplant, when it doesn't "take" your immune system looks at that kidney and says hey, that is foreign, and your body attacks it. Well, in my case, I'm getting a whole new immune system. So what happens when that new immune system looks at my body and says, hey, that's foreign? It's called, Graft-Versus-Host Disease, or GVHD. This is what scares me, more than the hospital, more than the chemo, more than losing my hair.... These four little letters, GVHD. I don't want my body to reject itself. I don't want to be sick for a year while it gets use to something new. They will put me on immune suppressants which stops your immune system from fighting, so it doesn't fight your body, but that also means, it doesn't fight anything else either.
There are two for sure things I've learned in my life about trials though. 1. NEVER say it can't get worse than this. and 2. You never know what you can go through until you have to go through it. So, that's it, one day at a time, one infection at a time. I will take my good days that are never quite right until they are all good again! I think maybe Pickles will get better before I do, but for now, I'll worry about her. It's so annoying to have something not right with your body.
"There may be times when we have been hurt, when we are tired, when our lives seem dark and cold. There may be times that we cannot see any light on the horizon, and we may feel like giving up. If we are willing to believe, if we desire to believe, if we choose to believe than the Savior's teachings and example will show us the pathway forward."
~ L. Whitney Clayton
Wednesday, July 22, 2015
Preparing for my Transplant
As luck would have it, the 1st out of 2 tests they run to find me a match turned up 100% match from one of my siblings. She said, usually the 2nd test runs a 99% chance that it will be a 100% match too. I don't know which sibling it is, she wouldn't tell me. I do know all my siblings are willing. Everyone says, "of course they are." or "that's what family does." and if the tables were turned I would do it too, without a 2nd thought. I don't think anyone knows though, exactly what it means to me. For them it's 8 hours in a hospital bed having blood cycled out of their body taking stem cells before having it go back into their body, boring mostly. Unless of course they get dizzy or cold or some weird side effect one might get while having their blood messed with for 4 hours a day. To me, it's being able to eat and not get nauseous. To me it's walking up the stairs or showering without feeling winded. To me it's not getting sick all the time. To me, their blood is life, a new chance. So while most are saying this is no big deal.... to me, it's everything.
I went to the doctor yesterday and my dad, Who always wants the best for me, says, "she's a little depressed." I'm not entirely sure he's not right, I cry a lot and I'm sad. I'd do anything to not have this happen to me, and I know other people have it worse. I also know this is above any limit I think I could ever handle alone. So, now I'm on anti depressants. I'm not sure they've really changed me much. I still feel pretty much the same although maybe not quite so sleepy.
Tomorrow I have another appointment. Before I get chemo they run all kinds of tests. They make sure you're heart, lungs, teeth, bones and even OBGYN checkup is all done. So, besides your blood they make sure you are about as healthy as can be, before they go in and start killing you.
Now, I understand why they do this, if my heart is healthy it has less of a chance of just dying on me while I'm being giving drugs killing my body. They don't want me to get teeth infections or all the other things I COULD get with no immune system.
Alma 26:12
Yea, I know that i am nothing; as to my strength I am weak; therefore I will no boast of myself, but I will boast of my God, for in his strength I can do all things; yea, behold, many mighty miracles we have wrought in this land, for which we will praise his name forever.
I went to the doctor yesterday and my dad, Who always wants the best for me, says, "she's a little depressed." I'm not entirely sure he's not right, I cry a lot and I'm sad. I'd do anything to not have this happen to me, and I know other people have it worse. I also know this is above any limit I think I could ever handle alone. So, now I'm on anti depressants. I'm not sure they've really changed me much. I still feel pretty much the same although maybe not quite so sleepy.
Tomorrow I have another appointment. Before I get chemo they run all kinds of tests. They make sure you're heart, lungs, teeth, bones and even OBGYN checkup is all done. So, besides your blood they make sure you are about as healthy as can be, before they go in and start killing you.
Now, I understand why they do this, if my heart is healthy it has less of a chance of just dying on me while I'm being giving drugs killing my body. They don't want me to get teeth infections or all the other things I COULD get with no immune system.
Alma 26:12
Yea, I know that i am nothing; as to my strength I am weak; therefore I will no boast of myself, but I will boast of my God, for in his strength I can do all things; yea, behold, many mighty miracles we have wrought in this land, for which we will praise his name forever.
Sunday, July 19, 2015
Let's Talk Chemo
Chemotherapy (often abbreviated to chemo and sometimes CTX or CTx) is a category of cancer treatment that uses chemical substances, especially one or more anti-cancer drugs (chemotherapy agents) that are given as part of standardized chemotherapy regimen.
So, that definition, sucks. Perhaps a better one (the one my doctor gave me) is: The ability of chemotherapy and/or radiation to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink.
Although in my case, there is no tumor, my blood is just broken. As you can imagine, chemotherapy also halts good cells from dividing. So, why did my blood just decide to malfunction? According to the doctor, you can be the best driver in the world and still get hit by another driver. So, I'm just lucky. To make myself more lucky, I got a disease that usually happens to men over the age of 50. I don't know how or why I got sick. I am constantly working through the 5 stages of grief, there is a lot of bargaining going on, as you can imagine. "Get down on your knees and pray. Say, 'I'll do whatever you want God just let me have my way.'" ~Jewel There's also a lot of tears, anger, denial. In fact, this morning I didn't take my usual handful of pills, hoping that it wouldn't cause the usual nausea and vomiting. No such luck though, my stomach is still angry with me.
So, the reason I say I have leukemia, even though technically I don't have enough blast cells, or cancer cells for it to be considered leukemia, is that I still get to have chemotherapy. They don't leave me out of that fun. Although, I don't have to go through as much as some. I also get a bone marrow transplant. So, my treatment will consist of two types of chemotherapy.
Busulfan (Myleran)
Busulfan will be administered four times a day. Busulfan will suppress your bone marrow and destroy cancer cells. It has been associated with seizures, although this is uncommon. In order to prevent this risk of seizures you will be given a drug called levetivacetam (Keppra) for the time you are taking busulfan.
Side effects from busulfan include: thinned or brittle hair, darkened and dry skin, loss of appetite or weight, diarrhea, mouth blistering and fatigue. A long term side effect of busulfan called, pulmonary fibrosis is rare. This medication has also be associated with increased risk of developing other cancers in the future.
Cyclophosphamide (Cytoxan)
The most common side effect of cyclophosphamide is a decrease in the number of blood cells, with associated risks of infection, bleeding and red blood cell count. While being treated with cyclophosphamide, drink plenty of fluids because this drug can irritate your kidneys and bladder and create a condition called hemorrhagic cystitis (bleeding in the bladder). You will be given another medication called Mesna to help protect your bladder from the harmful effects of the cyclophosphamide along with large volumes of fluid. You will notice the need to empty your bladder frequently during this time.
Cyclophosphamide can also cause changes in fingernails and toenails. You may notice discoloration or lines and ridges. Cyclophosphamide rarely causes damage to the heart muscle. This is an unpredictable problem that may range from irregular heart rhythm to death.
Common side effects from cyclophosphamide include: nausea, vomiting, thinned or brittle hair, darkened and thickened skin, blistering skin or acne, loss of appetite or weight, blistering mouth sores, and fatigue.
So there it is, six days, one day short of a week from hell. One week of my life I'd rather die than live. Just for the record, I don't plan on dying!!!! I not only plan on making it through this but I will be cured!!!! I might be bald and slightly thinner and look different but I WILL get through this! Thanks to Kim Brown (a great friend of mine) I even have a great hair cut until I lose all mine. She even came to the hospital to cut it! A kindness I can't repay!
After this week from hell they send in the "rescue" cells. The cells taken (hopefully) from one of my siblings to help my now near dead body. You'd think that after that, your body would say "OH THANK YOU!!!" and you'd get on with your life, right? Not quite. Next entry I'll tell you about recovery.
As always I'll leave you with a quote:
"There will always be things to complain about-things that don't seem to go quite right. You can spend your days feeling sad, alone, misunderstood or unwanted. But that isn't the journey you had hoped for, and it isn't the journey Heavenly Father sent you to take. Remember, you are truly a daughter of God!
"With this in mind, I invite you to walk confindently and joyfully. Yes, the road has bumps and detours and even some hazards. But don't focus on them. Look for happiness your Father in Heaven has prepared for you in every step of your journey. Happiness is the destination, but it's also the path. 'Peace in this world, and eternal life in the world to come' is what He promises. That is why he commands us to 'be of good cheer.'"
~Dieter F. Uchtdorf
So, that definition, sucks. Perhaps a better one (the one my doctor gave me) is: The ability of chemotherapy and/or radiation to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink.
Although in my case, there is no tumor, my blood is just broken. As you can imagine, chemotherapy also halts good cells from dividing. So, why did my blood just decide to malfunction? According to the doctor, you can be the best driver in the world and still get hit by another driver. So, I'm just lucky. To make myself more lucky, I got a disease that usually happens to men over the age of 50. I don't know how or why I got sick. I am constantly working through the 5 stages of grief, there is a lot of bargaining going on, as you can imagine. "Get down on your knees and pray. Say, 'I'll do whatever you want God just let me have my way.'" ~Jewel There's also a lot of tears, anger, denial. In fact, this morning I didn't take my usual handful of pills, hoping that it wouldn't cause the usual nausea and vomiting. No such luck though, my stomach is still angry with me.
So, the reason I say I have leukemia, even though technically I don't have enough blast cells, or cancer cells for it to be considered leukemia, is that I still get to have chemotherapy. They don't leave me out of that fun. Although, I don't have to go through as much as some. I also get a bone marrow transplant. So, my treatment will consist of two types of chemotherapy.
Busulfan (Myleran)
Busulfan will be administered four times a day. Busulfan will suppress your bone marrow and destroy cancer cells. It has been associated with seizures, although this is uncommon. In order to prevent this risk of seizures you will be given a drug called levetivacetam (Keppra) for the time you are taking busulfan.
Side effects from busulfan include: thinned or brittle hair, darkened and dry skin, loss of appetite or weight, diarrhea, mouth blistering and fatigue. A long term side effect of busulfan called, pulmonary fibrosis is rare. This medication has also be associated with increased risk of developing other cancers in the future.
Cyclophosphamide (Cytoxan)
The most common side effect of cyclophosphamide is a decrease in the number of blood cells, with associated risks of infection, bleeding and red blood cell count. While being treated with cyclophosphamide, drink plenty of fluids because this drug can irritate your kidneys and bladder and create a condition called hemorrhagic cystitis (bleeding in the bladder). You will be given another medication called Mesna to help protect your bladder from the harmful effects of the cyclophosphamide along with large volumes of fluid. You will notice the need to empty your bladder frequently during this time.
Cyclophosphamide can also cause changes in fingernails and toenails. You may notice discoloration or lines and ridges. Cyclophosphamide rarely causes damage to the heart muscle. This is an unpredictable problem that may range from irregular heart rhythm to death.
Common side effects from cyclophosphamide include: nausea, vomiting, thinned or brittle hair, darkened and thickened skin, blistering skin or acne, loss of appetite or weight, blistering mouth sores, and fatigue.
So there it is, six days, one day short of a week from hell. One week of my life I'd rather die than live. Just for the record, I don't plan on dying!!!! I not only plan on making it through this but I will be cured!!!! I might be bald and slightly thinner and look different but I WILL get through this! Thanks to Kim Brown (a great friend of mine) I even have a great hair cut until I lose all mine. She even came to the hospital to cut it! A kindness I can't repay!
After this week from hell they send in the "rescue" cells. The cells taken (hopefully) from one of my siblings to help my now near dead body. You'd think that after that, your body would say "OH THANK YOU!!!" and you'd get on with your life, right? Not quite. Next entry I'll tell you about recovery.
As always I'll leave you with a quote:
"There will always be things to complain about-things that don't seem to go quite right. You can spend your days feeling sad, alone, misunderstood or unwanted. But that isn't the journey you had hoped for, and it isn't the journey Heavenly Father sent you to take. Remember, you are truly a daughter of God!
"With this in mind, I invite you to walk confindently and joyfully. Yes, the road has bumps and detours and even some hazards. But don't focus on them. Look for happiness your Father in Heaven has prepared for you in every step of your journey. Happiness is the destination, but it's also the path. 'Peace in this world, and eternal life in the world to come' is what He promises. That is why he commands us to 'be of good cheer.'"
~Dieter F. Uchtdorf
Saturday, July 18, 2015
I'm grateful
In this blog I'm going to tell you a little about what it's been like being sick but mostly about the fact that I have, by far, the best friends and family anyone could ever have. I actually feel kinda sorry for everyone else. :)
My next entry I'll talk about what my treatment will be and tell you about recovery, maybe I can joke about it a little then.
Halfway through my hospital stay in Brampton I was laying in bed after 2 days without tests and still no idea what was wrong. I felt fine (of course I was getting drugs right to the vein.) So I asked the doctor if I could leave, any other tests I could come in for. Being a good caring doctor he set up a test for the next day then let me go. I was happy to be home for the night and to have my own bed. The next morning my friend Brooke came (way out of her way) to take me to get my test. When I got home, I threw up. Later that night my husband, who has never had to care for anyone in his life, and me who doesn't like to ask for help, sat home. He went up to get food and then he ate. He didn't get me anything. I was so weak and by the time I finished cooking I was too sick to eat. Within a day and a half I was back in the hospital, weak and unable to hold anything down. This time I had a doctor come and say I'm going to get some answers. So he took my bone marrow. We of course already know what that turned up. But that's not what entry is for.
You see, I have amazing people in my life. People who would never admit to doing anything great but always did. Betty Walling took me home with her when I left the hospital. She cooked for me did my laundry made sure I could get up, and started walking with me when I could and helped me in and out of bed when my spleen and shoulder hurt so bad I could barely move. She constantly drove me to and from the hospital and even after I left her house did more than I could ever repay.
Brooke became like a sister, she was there to talk to and she took me to church. I never felt alone with her around.
Karla, sat with me at the hospital. Just like my mom would've, didn't care if I wanted to sleep or if I wanted to talk. She would work on making her beautiful blankets and just be there. Between Betty, Brooke and Karla I was never alone at the hospital even when my in laws and husband were at work.
There was also Ekam, who always sent me uplifting thoughts, quotes and scriptures and forever kept a smile on my face.
Before any of this happened though I had sister missionaries who brought back my spirit and reminded me how great the LDS church is and reminded me of why I pray. Then of course my constant family member, who has never left my side and helps me every step of the way, my father in heaven. I'm so lucky I grew up in a family where faith and religion was important and I'm so happy for the examples of my family and friends. So for all those sister missionaries who gave up two years of their life ... thank you.
I'm forever grateful for my in laws. Who NEVER made me feel like I didn't belong. Who helped me when I got sick instead of making me feel like a burden. My mom who I miss so much was always so kind to me and helped me. My dad who gave me his pain pills when I ran out and who always made me laugh. My nan and pop and all my aunts and uncles even my very quiet brother in law, I love and miss very much.
Then I came home to my family and friends in Utah. My friends have all made me feel loved and supported. Jessica (is home on vacation too) so I got to see her when I needed her. KD who has been through so much herself told me even she use to cry and made me feel a little less studpid. Sometimes I can't help it. I'm so sick of being sick. I know there are people who have it worse, but this is sometimes more than I think I can take. I throw up too much and I'm so tired all the time. In fact, I'm getting blood right now cause I'm low again. My friends text me often to see how I am. Take me to lunch, and spend time listening to me complain.
Cathy made me soup and I honestly think she should stay in Utah and just be my nurse for the next few months instead of taking that amazing job in AZ.
My parents, what can I say? They don't complain about cooking for me or cleaning for me or doing my laundry. They've never complained about having to drive me to the hospital. The only thing they ever do is tell me they love me and they're glad I'm home.
I have 4 siblings. One of them will quite possibly save my life. All of them are standing in line though. Not thinking about their work or their own stuff... they've all been tested to see if they're a match for my bone marrow. This is something I can't repay and thank you doesn't seem enough.
That leaves my husband. My best friend in the whole world, the one who when he says, "it'll be alright." I believe. He gets me water with lots of ice when he sees I don't have it. He never complains about being asked to do something. He's helped me off the bathroom floor when the shower took all my energy and he's been there with me through all of this. He's even moving to the states to be with me. He's taught me to ask for help because he's always been happy to help. He's even learned to be a better caregiver than I think I could be.
I love him. All the way to the moon, and back. I miss him so much right now. He is the reason I try. He's the best thing that's ever happened to me and he also why I feel so sorry for every other woman in the world because there is only 1 Matt.
Today I also found out that my medicaid has been approved. Even though that is good news and the doctors will be happy, I don't feel relief. I'm now afraid of how sick I will become when the treatment starts. I have to tell myself that people get through this, so can I. Being sick for a year isn't the worst thing that can happen to me (although it feels like it).
So, leaving you with a quote again:
"Happiness doesn't come from external circumstances. It comes from the inside -regardless of what is happening around us."
~Dieter F. Uchtdorf
My next entry I'll talk about what my treatment will be and tell you about recovery, maybe I can joke about it a little then.
Halfway through my hospital stay in Brampton I was laying in bed after 2 days without tests and still no idea what was wrong. I felt fine (of course I was getting drugs right to the vein.) So I asked the doctor if I could leave, any other tests I could come in for. Being a good caring doctor he set up a test for the next day then let me go. I was happy to be home for the night and to have my own bed. The next morning my friend Brooke came (way out of her way) to take me to get my test. When I got home, I threw up. Later that night my husband, who has never had to care for anyone in his life, and me who doesn't like to ask for help, sat home. He went up to get food and then he ate. He didn't get me anything. I was so weak and by the time I finished cooking I was too sick to eat. Within a day and a half I was back in the hospital, weak and unable to hold anything down. This time I had a doctor come and say I'm going to get some answers. So he took my bone marrow. We of course already know what that turned up. But that's not what entry is for.
You see, I have amazing people in my life. People who would never admit to doing anything great but always did. Betty Walling took me home with her when I left the hospital. She cooked for me did my laundry made sure I could get up, and started walking with me when I could and helped me in and out of bed when my spleen and shoulder hurt so bad I could barely move. She constantly drove me to and from the hospital and even after I left her house did more than I could ever repay.
Brooke became like a sister, she was there to talk to and she took me to church. I never felt alone with her around.
Karla, sat with me at the hospital. Just like my mom would've, didn't care if I wanted to sleep or if I wanted to talk. She would work on making her beautiful blankets and just be there. Between Betty, Brooke and Karla I was never alone at the hospital even when my in laws and husband were at work.
There was also Ekam, who always sent me uplifting thoughts, quotes and scriptures and forever kept a smile on my face.
Before any of this happened though I had sister missionaries who brought back my spirit and reminded me how great the LDS church is and reminded me of why I pray. Then of course my constant family member, who has never left my side and helps me every step of the way, my father in heaven. I'm so lucky I grew up in a family where faith and religion was important and I'm so happy for the examples of my family and friends. So for all those sister missionaries who gave up two years of their life ... thank you.
I'm forever grateful for my in laws. Who NEVER made me feel like I didn't belong. Who helped me when I got sick instead of making me feel like a burden. My mom who I miss so much was always so kind to me and helped me. My dad who gave me his pain pills when I ran out and who always made me laugh. My nan and pop and all my aunts and uncles even my very quiet brother in law, I love and miss very much.
Then I came home to my family and friends in Utah. My friends have all made me feel loved and supported. Jessica (is home on vacation too) so I got to see her when I needed her. KD who has been through so much herself told me even she use to cry and made me feel a little less studpid. Sometimes I can't help it. I'm so sick of being sick. I know there are people who have it worse, but this is sometimes more than I think I can take. I throw up too much and I'm so tired all the time. In fact, I'm getting blood right now cause I'm low again. My friends text me often to see how I am. Take me to lunch, and spend time listening to me complain.
Cathy made me soup and I honestly think she should stay in Utah and just be my nurse for the next few months instead of taking that amazing job in AZ.
My parents, what can I say? They don't complain about cooking for me or cleaning for me or doing my laundry. They've never complained about having to drive me to the hospital. The only thing they ever do is tell me they love me and they're glad I'm home.
I have 4 siblings. One of them will quite possibly save my life. All of them are standing in line though. Not thinking about their work or their own stuff... they've all been tested to see if they're a match for my bone marrow. This is something I can't repay and thank you doesn't seem enough.
That leaves my husband. My best friend in the whole world, the one who when he says, "it'll be alright." I believe. He gets me water with lots of ice when he sees I don't have it. He never complains about being asked to do something. He's helped me off the bathroom floor when the shower took all my energy and he's been there with me through all of this. He's even moving to the states to be with me. He's taught me to ask for help because he's always been happy to help. He's even learned to be a better caregiver than I think I could be.
I love him. All the way to the moon, and back. I miss him so much right now. He is the reason I try. He's the best thing that's ever happened to me and he also why I feel so sorry for every other woman in the world because there is only 1 Matt.
Today I also found out that my medicaid has been approved. Even though that is good news and the doctors will be happy, I don't feel relief. I'm now afraid of how sick I will become when the treatment starts. I have to tell myself that people get through this, so can I. Being sick for a year isn't the worst thing that can happen to me (although it feels like it).
So, leaving you with a quote again:
"Happiness doesn't come from external circumstances. It comes from the inside -regardless of what is happening around us."
~Dieter F. Uchtdorf
Friday, July 17, 2015
Meeting Leuk
My name is Ruth. As you can tell from my title I have Leukemia. Actually, I have MDS, but if anyone tries to tell me it's NOT leukemia, I will kick their ass until they can't sit anymore.
I don't know why I decided to write this. Probably something to do to fill my days and not become depressed. Although I sometimes think I am depressed. I've never really written in my life and this may turn out to be a big boring mistake.
It is now mid July of 2015. This adventure started while I was living in Brampton, ON in January. I told my husband I had stomach pains and needed to see a doctor. 12 hours in the ER told us that I had an enlarged spleen and infarts (places on the spleen that were dying.) The doctor said I would need extensive tests to find out why but all he did was send me home with pain pills. I, of course, didn't have a doctor up there, so as I started to feel better I figured it was just a thing. Nothing big. Although, while at the hospital I got a blessing and in the blessing they said as I put my faith and trust in the Lord I will be cured from this. (If you'd like to know what "blessing" means check out WWW.LDS.ORG) This was my first clue that something might not be right.
In April I was up all night throwing up and now the right side of my abdomen was hurting, so back to the hospital and this time I was admitted where they ran EVERY kind of test they could and finally ended with a bone marrow biopsy. Since everyone wonders, YES it does hurt. The drilling is annoying but it's when they suck out the marrow that sends shocks down your leg that makes you want to jump off the table. I can say however the Doctor at LDS hospital did it SOOOO much better and it hardly hurt at all.
Well, results came back I have MDS or "pre-cancer." They referred me to a cancer hospital in Toronto. I waited and waited for a call and still after 2 months they never called me. I returned to the hospital twice and both time heard "you NEED to get treated, this will get worse." So, I came to Utah where I have received more care, attention and love in 2 weeks than I did in 5 months in Canada. I don't like Canada's health system.
So, my next entry I'll write about what's going on, how I'll be treated, what I've learned and of course.... how much I've cried.
You know those people who are going through cancer and just seem happy all the time? So far, that's not me. I'm still looking for that hope to pop up. I'm waiting to feel my heavenly father's love so strong that no matter what happens, I know I will be ok.
So I will leave you with a quote:
"Don't be gloomy. Do not dwell on unkind things. Stop seeking out the storms and enjoy more fully the sunlight. Even if you are not happy, put a smile on your face. 'Accentuate the positive.' Look a little deeper for the good. Go forward in life with a twinkle in your eye and a smile on your face, with great and strong purpose in your heart. Love life."
~Gordon B Hinckley
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