Other than the post about my cancer and how things are. I plan to fill this blog with random bits of...well, anything that strikes me to write about. I've discovered loads of different things at Pintrest, journal prompts, challenges, and many other things. The only thing you're likely not to find in here are a ton of pictures. Anything like that my family will have and are of course personal. So, with that in mind don't be too surprised when you find a random post that has nothing at all to do with my current health, but I will make note of it if anything big happens.
What did you want to be as a child, and how does that compare to how you define yourself now?
As a child I spent a good deal of time in and out of hospitals for a condition I had. That I later was on a clinical study for at the National Institute of Health in Bethesda, Maryland. On top of that my aunt was also working to become a nurse. So naturally, I wanted to be a nurse. For a very long time that was the single driving force for what I wanted to be. Didn't matter what other jobs sounded appealing to me, it was nurse or nothing! Right out of high school, I attended a year long course to be come a medical assistant. To me, it was the first stepping stone to becoming a nurse.
Easy enough right, they roomed patients, did the vital signs, and just assisted the rest of the clinic staff where needed. No problem, all things I could easily do. Save for two, tiny little things, that I thought wouldn't bother me as a nurse since they had no effect on me as the patient. Drawing other peoples blood, and the worst timing of all gag reflexes. Sad isn't it, I was so worried about hurting the other person who's blood I was taking that I just couldn't manage it. In class, when we tried it, I had left the tourniquet on too long and made a mess. As for the gagging issue, well it doesn't look to good when you're trying to take someones throat culture and you are the one gagging before them.
Turns out, I am not nursing material. After that I did some odd jobs here and there, medical assembly, general assembly, and the dreaded world of retail. Even went back to school to try my hand at medical coding and billing. Surely I could handle working the office side of medicine. That also was a bust, and I landed myself back in retail. Five years of that, and then the cancer hit and I went through that whole mess. Tried again to go back to work when we thought everything was good and gone. This time at another assembly job that I was very happy to have. Well, as you know the cancer came back, and I am officially and permanently disabled.
If you could write a letter to your 15 year old self, what would you say?
First and foremost I would tell my younger self to reconsider other job options. I remember back then thinking that working with computers would be a good way to go. Perhaps a chef or cook book author since I enjoyed cooking, and had loved to look through all manner of cook books. I also would tell myself to practice Spanish more, and maybe when done with that learn another language that I wanted to know. That way I could travel around the world and experience many different things. Learn more about a countries history and culture. All things that I would have loved to do.
I also would have told myself, not to let myself get stuck in the 'nurse rut'. That there was more out there, I just had to look for it. Not to let my desire to escape from my father's house be the thing that pushed me to go to college right out of high school in the first place. I should have thought it over, considered a lot more things about my future before jumping on the first opportunity that looked like it would get me out that door. Should have thought of where I wanted to be five years down the road, or maybe even ten.
Keep better track of your health too. Hind sight and all that. Remember what I said about all those doctors as a kid? Yeah...as a teen, and an adult unless I was in pain so bad I couldn't stand it, guess who avoided them like the plague. Something I definitely regret now, always wondering if I could have caught the cancer sooner. Would it be gone for good now if I had? What sign did I miss? Or was it just gonna happen this way anyway, the ultimate challenge from God? Like I said before thought, challenge accepted, sir. I will fight! I will not give up! I am going to live and enjoy my life for as long as you are so inclined to let me enjoy it!
Wednesday, July 26, 2017
Saturday, July 22, 2017
Things You Need to Think About
There are more things you need to think about when you have cancer then you realize at first. Not just yourself, but the support team as well. Some of them are for your benefit, such as how you might be feeling on any given day. For example, normally on a day where I'm feeling somewhat energetic and the weather isn't too hot, I enjoy going out with my mom. Today however, was a day where I wanted to go, but the humidity was just killing me so I opted to stay home instead. It's just one of those things you need to do.
As a support team member, one thing that is important to think about is the new limitations your friend may have. It'd be nice to think that we can just pick up and go where we want to just like we always did. Our new normal however, doesn't always allow for that. A good example for me on this one is that I have what is called a B.A.D. infusion pump that is permanently attached to my port. What it does is give me a constant flow of Benedryl, Ativan, and Decadron, all of them to help keep my nausea in check. Unfortunately this means changes, such as no more driving as each of them can cause drowsiness. It also means I can't go swimming, or jump in a shower since the pump obviously would need to stay dry.
Another limitation it sets on me is that it needs to be changed out weekly. For the most part that isn't such a bad thing, but it does pretty much mean I can't take any long trips. Of course if I was having a hard time and had to give myself an extra dose or two, it might need to be changed sooner. Thankfully though the normal dose I get is enough to keep things in check, and I've only had to use a bump or two on very rare occasions.
Some of these new changes have caused a few new pet peeves to pop up for me. Like having to say 'No' to things that I once might have said 'Yes' to without any hesitation what so ever. Not all of it is due to the pump however. A good portion of it is just the limitations my body has. Like lack of strength and stamina for doing pretty much anything. As it is, I often need to use an electric cart when out shopping with my mother. Walking short distances, say from my bedroom out to the living room are no problem. Walking around a store, pretty sure I'd be flat on my back in seconds both from lack of strength and dizziness.
I've also learned a lot from my new limitations. Like not judging people like I used to when I'd see them using the above mentioned carts. Some people it was obvious they needed them, they'd be wearing a cast or one of those walking boots after a cast comes off. Or they'd be an elderly person with a cane resting in the basket. Simple things that told me these people needed that cart. Then you'd see the ones who, like I was recently accused of, just being overweight and too lazy to walk. Naturally I wanted to say something in my defense, but not wanting to start I fight I simply said that I was using the cart. I never considered, back before my cancer, that there could be something wrong with the other person an invisible disease if you will. Which is exactly what cancer is.
As a support team member, one thing that is important to think about is the new limitations your friend may have. It'd be nice to think that we can just pick up and go where we want to just like we always did. Our new normal however, doesn't always allow for that. A good example for me on this one is that I have what is called a B.A.D. infusion pump that is permanently attached to my port. What it does is give me a constant flow of Benedryl, Ativan, and Decadron, all of them to help keep my nausea in check. Unfortunately this means changes, such as no more driving as each of them can cause drowsiness. It also means I can't go swimming, or jump in a shower since the pump obviously would need to stay dry.
Another limitation it sets on me is that it needs to be changed out weekly. For the most part that isn't such a bad thing, but it does pretty much mean I can't take any long trips. Of course if I was having a hard time and had to give myself an extra dose or two, it might need to be changed sooner. Thankfully though the normal dose I get is enough to keep things in check, and I've only had to use a bump or two on very rare occasions.
Some of these new changes have caused a few new pet peeves to pop up for me. Like having to say 'No' to things that I once might have said 'Yes' to without any hesitation what so ever. Not all of it is due to the pump however. A good portion of it is just the limitations my body has. Like lack of strength and stamina for doing pretty much anything. As it is, I often need to use an electric cart when out shopping with my mother. Walking short distances, say from my bedroom out to the living room are no problem. Walking around a store, pretty sure I'd be flat on my back in seconds both from lack of strength and dizziness.
I've also learned a lot from my new limitations. Like not judging people like I used to when I'd see them using the above mentioned carts. Some people it was obvious they needed them, they'd be wearing a cast or one of those walking boots after a cast comes off. Or they'd be an elderly person with a cane resting in the basket. Simple things that told me these people needed that cart. Then you'd see the ones who, like I was recently accused of, just being overweight and too lazy to walk. Naturally I wanted to say something in my defense, but not wanting to start I fight I simply said that I was using the cart. I never considered, back before my cancer, that there could be something wrong with the other person an invisible disease if you will. Which is exactly what cancer is.
Tuesday, July 18, 2017
Hospice Life: The New Normal
When the doctors first brought up the idea of having me enroll in hospice care, there was a quick rejection of the idea forming on my tongue. At that time I had no idea exactly what 'hospice' was but thought it was something that was only for people who were way older than me. That is was a place similar to a nursing home where I'd be stuck in a room for the rest of my life. That was something I didn't want. I wanted to be back in my own home, with my mom and the rest of my family. I was very hesitant to do anything that didn't end in that one goal, to be home.
I soon learned that it was anything but what I had pictured in my head. First of all, I would be able to go home and receive the care that I need. I also had options of what type of help I could make use of while I was enrolled. Automatically you have a social worker and a nurse who will come out to see you two to three times a week depending on your needs. From there you can choose, to have a bath aid, a chaplain, and a massage therapist or even a music therapist. Most of all I learned that their main goal, was to just make sure I was comfortable and had the things I needed in my new Normal.
Getting used to some things was a lot easier than others. We were able to ask for a specific nurse, one that had been with me through a good portion of my chemotherapy treatments. Having her at my side has been a tremendous help in getting used to hospice in general. The two that were more difficult for me was of course having a bath aide, and then talking with the chaplain. We discovered quickly that my energy for showers, even sitting on a shower chair was very difficult for me.
Talking with the chaplain the first time was not what I had expected. He did most of the talking the first time, letting me know how long he'd been doing the job. The types of people he's dealt with over the years, and how liked to approach each patient. I was able to relax and chat a bit with him, but I was still a little closed off to the idea. I have always been one to keep things to myself and bottle them until the pressure was too much. Last week, was very stressful for me and I reached out to speak with him.
He was happy to come by this morning and listened to everything I'd had to say. Didn't judge anything, just offered his thoughts on how I had managed to handle things so far, and was glad to learn that I had figured a few things out on my own. It was a very relaxing conversation for me, and nice to know that I wasn't wrong in the way I was trying to cope with the stress and other issues that had plagued me last week. Also nice to know that I haven't compleatly lost my marbles.
I soon learned that it was anything but what I had pictured in my head. First of all, I would be able to go home and receive the care that I need. I also had options of what type of help I could make use of while I was enrolled. Automatically you have a social worker and a nurse who will come out to see you two to three times a week depending on your needs. From there you can choose, to have a bath aid, a chaplain, and a massage therapist or even a music therapist. Most of all I learned that their main goal, was to just make sure I was comfortable and had the things I needed in my new Normal.
Getting used to some things was a lot easier than others. We were able to ask for a specific nurse, one that had been with me through a good portion of my chemotherapy treatments. Having her at my side has been a tremendous help in getting used to hospice in general. The two that were more difficult for me was of course having a bath aide, and then talking with the chaplain. We discovered quickly that my energy for showers, even sitting on a shower chair was very difficult for me.
Talking with the chaplain the first time was not what I had expected. He did most of the talking the first time, letting me know how long he'd been doing the job. The types of people he's dealt with over the years, and how liked to approach each patient. I was able to relax and chat a bit with him, but I was still a little closed off to the idea. I have always been one to keep things to myself and bottle them until the pressure was too much. Last week, was very stressful for me and I reached out to speak with him.
He was happy to come by this morning and listened to everything I'd had to say. Didn't judge anything, just offered his thoughts on how I had managed to handle things so far, and was glad to learn that I had figured a few things out on my own. It was a very relaxing conversation for me, and nice to know that I wasn't wrong in the way I was trying to cope with the stress and other issues that had plagued me last week. Also nice to know that I haven't compleatly lost my marbles.
Monday, July 10, 2017
Why I Wanted to Start Blogging Again
Cancer. Unless it's your astrological sign it's a very scary word to hear from your doctor. Yet it was the word spoken to me back in March 2012. I sat there in some odd state of disbelief as I listened to her over the phone. After we hung up, I immediately texted or called mom with the results. I was in a very hazy mood and couldn't really pay attention to what was going on around me. I remember her coming home from work earlier then she was supposed to, and after that it was just a blur of things I can't recall.
The things I can remember before that call was that I was clearly sick. Yet I woke up each morning and forced myself to go to work. No way was I gonna let something seemingly insignificant hold me back. I remember having a lot of back pain, similar to one I'd had before and wrote it off as just another episode. I was barely eating at one point, nothing would stay down. I can vividly recall my coworkers being upset by how pale I looked to them. My manager asking if she should call for an ambulance. I insisted that it was fine, I'd just have my mom come pick me up and leave the car over night.
Funny how you can convince yourself of these things, and yet on the inside you know you're wrong. After two visits to urgent care, and an official visit with my doctor. I was told a few different things. One thought it was just a bad UTI infection, the other that it was likely just the flu. I would have happily accepted either one of those. My doctor was the one who nailed it. Cancer, a word that I never expected to hear. At least not that I had it. To me that was not a word that a girl my age should hear. In fact, I've heard over and over from different doctors and nurse since that day that I was way to young to have it. That endometrial cancer, was not something a then 33 year old girl would get. How wrong they were. I had it, and by the time we found it I was already Stage IV and had moved on to my lungs.
Since then I have gone through several rounds of chemotherapy. Had a complete hysterectomy, followed up by more chemo just to make sure nothing was lurking. Then I was supposedly free and clear to go back to my life and enjoy it. It was almost six months after that before I felt well enough to work again. Started a new job that I loved. Life seemed to be looking up. Yet in the back of my mind my oncologists reminder that, if it came back we'd be looking at an uncureable cancer. Yeah, I didn't even want to think about it. Six months later, I was proven to be wrong. It was back, growing happily in my lungs without a care in the world.
It was back to more chemotherapy. More fighting to get my life back under my control, not some stupid disease. Then of course as they say, the shit hit the fan. I started having a bad reaction to one of my drugs. Tried to desensitize me to it, and that worked for a bit. However, that didn't last long and we moved on to a similar drug in the same family that was tolerated a bit better. That lasted for a bit, and then problem child that I am, I became allergic to that drug as well. I can't even count how many ER trips and hospital stays I've had in the last five years, but it's more then I ever wanted to deal with.
After that there was more chemo drugs, a bit of radiation for a tumor that collapsed a part of my right lung. Pulmonary embolisms, which have brought me the eternal joy of being on a blood thinner for the rest of my life. A round of a new chemo drug, that did absolutely nothing at all. The next one though, that one was the one that woke my sorry self up. I was told before we started that it could drop my blood counts a bit. Oh no, this puppy damn near tried to kill me! It crashed every little thing it could, and I was back in the ER again. Followed by a lovely stay in the ICU where things went from bad to worse and I scared the living heck out of my family.
Prior to that, even though I was fully aware that I had a terminal cancer, that yes I would eventually die. The key word there being eventually, I still believed that somehow, some way I was going to get better. That I'd get lucky and go into remission and it would just stay that way. Wishful thinking at its finest. Nope, that hope died a very, very sad death. Somewhere in that ICU, I lost myself for a bit and couldn't even tell you what happened. It was like I had blacked out or was having some crazy drug induced dream. Which isn't surprising because they had me on so many different things trying to figure out what was wrong.
By the time I came out of that, my pretty little dream of remission was dead. Clarity smacked me in the face and I knew, actually knew that my days of thinking it's gonna get better were long gone. I was gonna die, and that was that. Not a pretty thing to wake up to. I didn't take it to well and I can't imagine many people could. Listening to the parade of doctors who were looking over me at that point was torture. There was no sugar coating at all, something I'm grateful for now, not so much then. Yes, I cried. I was 38 years old and dying. I was going to be leaving my mom and family behind and I just could not even begin to accept that. It wasn't fair at all!
That month I spent in the hospital, first the ICU and then up on the cancer ward made me do a lot of thinking. Was I even gonna get out of the hospital? Was I gonna die without ever getting to sleep in my own bed again? Who was going to take care of mom for me? So many questions ran through my head every moment of every day. Every single one of them made me mad. I was eventually deemed well enough to me moved to a Transitional Care Unit for rehab so I could be moved home. That was another month of torture. Physical therapy, occupational therapy, and more stupid questions running through my head.
The only upside to this was that, I was still here, still living. Did that mean there was still hope? Probably not, at least not the same hope of some divine intervention that I had been believing in before. This was different, this was me and all that anger that had built up because of those questions. There was no way I was giving up this fight! I was going to fight tooth and nail for every day I could get. I was not backing down, and I was not gonna be pulled off the stage until I was damn good and ready to leave.
Here I am, today...still fighting. I am not actively getting treatment any more for my cancer. No more visits to the oncologist. Currently I'm in the wonderful hands of the Hospice team. Fighting to gain back as much strength as I can to keep on fighting. Some days it's easy, and some not so much. I get frustrated with myself constantly for not being able to do the simple things that I know my body was once capable of. I'm still a stubborn brat and think I can soldier through things without asking for help. I learning though or at least trying to. For now, even though it's not easy for me I do my best to just take one day at a time. Each day I wake up and the first thing I do is thank God for letting me have another day.
The things I can remember before that call was that I was clearly sick. Yet I woke up each morning and forced myself to go to work. No way was I gonna let something seemingly insignificant hold me back. I remember having a lot of back pain, similar to one I'd had before and wrote it off as just another episode. I was barely eating at one point, nothing would stay down. I can vividly recall my coworkers being upset by how pale I looked to them. My manager asking if she should call for an ambulance. I insisted that it was fine, I'd just have my mom come pick me up and leave the car over night.
Funny how you can convince yourself of these things, and yet on the inside you know you're wrong. After two visits to urgent care, and an official visit with my doctor. I was told a few different things. One thought it was just a bad UTI infection, the other that it was likely just the flu. I would have happily accepted either one of those. My doctor was the one who nailed it. Cancer, a word that I never expected to hear. At least not that I had it. To me that was not a word that a girl my age should hear. In fact, I've heard over and over from different doctors and nurse since that day that I was way to young to have it. That endometrial cancer, was not something a then 33 year old girl would get. How wrong they were. I had it, and by the time we found it I was already Stage IV and had moved on to my lungs.
Since then I have gone through several rounds of chemotherapy. Had a complete hysterectomy, followed up by more chemo just to make sure nothing was lurking. Then I was supposedly free and clear to go back to my life and enjoy it. It was almost six months after that before I felt well enough to work again. Started a new job that I loved. Life seemed to be looking up. Yet in the back of my mind my oncologists reminder that, if it came back we'd be looking at an uncureable cancer. Yeah, I didn't even want to think about it. Six months later, I was proven to be wrong. It was back, growing happily in my lungs without a care in the world.
It was back to more chemotherapy. More fighting to get my life back under my control, not some stupid disease. Then of course as they say, the shit hit the fan. I started having a bad reaction to one of my drugs. Tried to desensitize me to it, and that worked for a bit. However, that didn't last long and we moved on to a similar drug in the same family that was tolerated a bit better. That lasted for a bit, and then problem child that I am, I became allergic to that drug as well. I can't even count how many ER trips and hospital stays I've had in the last five years, but it's more then I ever wanted to deal with.
After that there was more chemo drugs, a bit of radiation for a tumor that collapsed a part of my right lung. Pulmonary embolisms, which have brought me the eternal joy of being on a blood thinner for the rest of my life. A round of a new chemo drug, that did absolutely nothing at all. The next one though, that one was the one that woke my sorry self up. I was told before we started that it could drop my blood counts a bit. Oh no, this puppy damn near tried to kill me! It crashed every little thing it could, and I was back in the ER again. Followed by a lovely stay in the ICU where things went from bad to worse and I scared the living heck out of my family.
Prior to that, even though I was fully aware that I had a terminal cancer, that yes I would eventually die. The key word there being eventually, I still believed that somehow, some way I was going to get better. That I'd get lucky and go into remission and it would just stay that way. Wishful thinking at its finest. Nope, that hope died a very, very sad death. Somewhere in that ICU, I lost myself for a bit and couldn't even tell you what happened. It was like I had blacked out or was having some crazy drug induced dream. Which isn't surprising because they had me on so many different things trying to figure out what was wrong.
By the time I came out of that, my pretty little dream of remission was dead. Clarity smacked me in the face and I knew, actually knew that my days of thinking it's gonna get better were long gone. I was gonna die, and that was that. Not a pretty thing to wake up to. I didn't take it to well and I can't imagine many people could. Listening to the parade of doctors who were looking over me at that point was torture. There was no sugar coating at all, something I'm grateful for now, not so much then. Yes, I cried. I was 38 years old and dying. I was going to be leaving my mom and family behind and I just could not even begin to accept that. It wasn't fair at all!
That month I spent in the hospital, first the ICU and then up on the cancer ward made me do a lot of thinking. Was I even gonna get out of the hospital? Was I gonna die without ever getting to sleep in my own bed again? Who was going to take care of mom for me? So many questions ran through my head every moment of every day. Every single one of them made me mad. I was eventually deemed well enough to me moved to a Transitional Care Unit for rehab so I could be moved home. That was another month of torture. Physical therapy, occupational therapy, and more stupid questions running through my head.
The only upside to this was that, I was still here, still living. Did that mean there was still hope? Probably not, at least not the same hope of some divine intervention that I had been believing in before. This was different, this was me and all that anger that had built up because of those questions. There was no way I was giving up this fight! I was going to fight tooth and nail for every day I could get. I was not backing down, and I was not gonna be pulled off the stage until I was damn good and ready to leave.
Here I am, today...still fighting. I am not actively getting treatment any more for my cancer. No more visits to the oncologist. Currently I'm in the wonderful hands of the Hospice team. Fighting to gain back as much strength as I can to keep on fighting. Some days it's easy, and some not so much. I get frustrated with myself constantly for not being able to do the simple things that I know my body was once capable of. I'm still a stubborn brat and think I can soldier through things without asking for help. I learning though or at least trying to. For now, even though it's not easy for me I do my best to just take one day at a time. Each day I wake up and the first thing I do is thank God for letting me have another day.
Tuesday, July 4, 2017
Just A Simple Introduction
It's been quite some time since I've had the pleasure of blogging. Life has threw me a few curves and I had to take a break. My plans for this blog are to simply have a place to put things down for my friends and family, or anyone else who'd like to hear my story. There will also be a few other things along the way, monthly challenges, memes, or other things that catch my interest. This is a personal blog for fun, not profit. Hopefully I'll get things sorted soon so this will look a bit cleaner, and have a proper introduction and all that.
Subscribe to:
Comments (Atom)
