Amazing Melanoma Mom
Tuesday, August 20, 2013
pain pain go away
So it has been awhile since I have blogged anything figure time about to give an update. Just realized its been 8 weeks of chemo. The doctors have seen a reduction in tumor. size which is awesome! However with the good is the bad,the side effects are brutal. Dr flarethy(sp) said expect to feel worse then better and he wasn't joking. On any given day my pain level is about a 15-20 on a scale of 10. It makes it hard to take care of my daughter which makes me feel like a bad mom but I have to get over it so I can heal myself. I just don't like waking up not knowing where I smjust so I can not be in pain. Its scary but is what I need right now. With the chemo some of the side effects are screwed up skin issues,leg pain,Wright loss,sour stomach.,dry skin,sunburn.,and blurred vision. I think the one that bothers me the most is lack of energy. That is exhausting just talking about it.all I know is the faster I am off the steroids the faster I can get back to functioning like a real person. So when people ask me how I feel they can refer to this blog.
Monday, July 22, 2013
Power of Prayer
So yesterday was a white flag yes I cancer I forgot about that my bad kind of day. Since I can't drive right now due to three seizures and the inability to tell if my brain is still swollen no driving for me. In stead I have to rely on people and my to do list is now a Driving Miss Daisy list. We completed as much as we could on Saturday then completed some on yesterday.
First off had to use the motorized cart at Meijer. Three were broke and two had to be charged so it took about 15 minutes to get one. Being dizzy and lightheaded a cart was needed. Anyhoo, I never realized how rude people are and the fact they are not teaching their kids manners. Never got cut off so much in my life that at the end I just started being rude and riding in the center and tried to be annoying as much as I could. Then the one girl was being rude so I stopped the cart right in front of her. She was like um what are you doing? I said being a witch like you! And when I was trying to put the cart back to be nice some jerk was standing right where the carts were and I had to yell at him to move your in the wrong hole idiot! The rudeness was slap worthy for the 90 minutes it took to shop.
So got home, took a nap and woke up in pain. Not just any pain but pain so bad I couldn't talk, teeth clinched, tears rolling down come to Jesus moment kind of pain. Thank goodness for technology was able to text my mom don't come in the bedroom I need a moment. My painkillers that I was given my body does not like them and is started to not respond to them. I just get loopy and can't function. Guess that's ok if you dont have a 5 month old and like feeling like an addict. I will pass. Instead put on Facebook healing prayers are needed. Drank some water and rocked my body back and forth on the bed for 30 minutes. After that was able to stand, what a glorious feeling.
Having been independent my whole life it takes a moment to realize hey wait I am sick. Yesterday was one of those days. So when people ask how I'm doing this is how a rough or bad day goes for me.
First off had to use the motorized cart at Meijer. Three were broke and two had to be charged so it took about 15 minutes to get one. Being dizzy and lightheaded a cart was needed. Anyhoo, I never realized how rude people are and the fact they are not teaching their kids manners. Never got cut off so much in my life that at the end I just started being rude and riding in the center and tried to be annoying as much as I could. Then the one girl was being rude so I stopped the cart right in front of her. She was like um what are you doing? I said being a witch like you! And when I was trying to put the cart back to be nice some jerk was standing right where the carts were and I had to yell at him to move your in the wrong hole idiot! The rudeness was slap worthy for the 90 minutes it took to shop.
So got home, took a nap and woke up in pain. Not just any pain but pain so bad I couldn't talk, teeth clinched, tears rolling down come to Jesus moment kind of pain. Thank goodness for technology was able to text my mom don't come in the bedroom I need a moment. My painkillers that I was given my body does not like them and is started to not respond to them. I just get loopy and can't function. Guess that's ok if you dont have a 5 month old and like feeling like an addict. I will pass. Instead put on Facebook healing prayers are needed. Drank some water and rocked my body back and forth on the bed for 30 minutes. After that was able to stand, what a glorious feeling.
Having been independent my whole life it takes a moment to realize hey wait I am sick. Yesterday was one of those days. So when people ask how I'm doing this is how a rough or bad day goes for me.
Saturday, July 20, 2013
How You Doing?
This is a question I get a lot and the answer really depends on that day. When people hear that you have stage 4 cancer they assume one your going to die the next day or two that the doctors gave you the wrong diagnosis and have no idea what they are talking about. I get a lot of the second one. How does someone get a diagnosis of stage 4 cancer at 33? Same way someone who is 6 months gets a diagnosis of neuroblastoma its the luck of the draw when it comes to your gene pool. I didn't get Melanoma by being a sunbather or tanning. With me it was about gene mutation and the fact that I had several sunburns as kid that resulted from water blisters. No one used sunscreen on us kids in the 80's it was all about baby oil or you'll be fine now go play.
However, back to the how you doing question. Everyday is a struggle. I try to not whine and complain thought some days as a patient the white flag goes up. Waking up at 3am with pain so bad in your shins you result to laying in the fetal position in the bathroom crying because you want your mother to hold you is not how I envision my Friday nights. Taking so many medicine is on my nerves. Not a fan of synthetic drugs in my system and every time I go back to Karmanos they want to give me 2 more. Quit taking the Prilosec because that was doing nothing. They screwed up the Zofran and decided it would be awesome to give me a sedating med in response. Apparently someone forgot that I have a 5 month old, being stoned off my behind does nothing. In response I decided to go back to my chiropractor. Best decision I made because he does muscle testing and found out that oils that I have been using my body is not a fan of. Awesome sauce nothing like wasting money. Anyhoo, going alternative this time along with the traditional method is proving to be challenging but I feel so much better.
As for how I feel today was a white flag kind of day as was yesterday. Got heartburn back, I was dizzy all day even had to use the motorized cart at Target which was embarrassing, but I am sick so guess you just got to go with it. Try to stay hydrated is becoming a chore. Mainly I think I do pretty good but I have my struggles. Just take things slowly, hug some walls, walk slower and breathe.
However, back to the how you doing question. Everyday is a struggle. I try to not whine and complain thought some days as a patient the white flag goes up. Waking up at 3am with pain so bad in your shins you result to laying in the fetal position in the bathroom crying because you want your mother to hold you is not how I envision my Friday nights. Taking so many medicine is on my nerves. Not a fan of synthetic drugs in my system and every time I go back to Karmanos they want to give me 2 more. Quit taking the Prilosec because that was doing nothing. They screwed up the Zofran and decided it would be awesome to give me a sedating med in response. Apparently someone forgot that I have a 5 month old, being stoned off my behind does nothing. In response I decided to go back to my chiropractor. Best decision I made because he does muscle testing and found out that oils that I have been using my body is not a fan of. Awesome sauce nothing like wasting money. Anyhoo, going alternative this time along with the traditional method is proving to be challenging but I feel so much better.
As for how I feel today was a white flag kind of day as was yesterday. Got heartburn back, I was dizzy all day even had to use the motorized cart at Target which was embarrassing, but I am sick so guess you just got to go with it. Try to stay hydrated is becoming a chore. Mainly I think I do pretty good but I have my struggles. Just take things slowly, hug some walls, walk slower and breathe.
Thursday, July 18, 2013
Newest Blog
I know I created a blog to keep everyone informed only thing is we are in limbo. See the doctor back next Friday but we are not expecting any changes. The appointment is pretty much to make sure I have the drugs regulated so more blood work ugh. September 9th are when the scans are going really show what has or has not worked. Praying the fireworks in my head I see and feel are the tumors breaking off. Main thing is to get this crazy steroids to go away. I eat so much and am bloated to where I feel like shrek.
Recently, went back to the chiropractor, started on some supplements for my liver and my adrenal glands. Also quit taking my pain drugs and my heartburn medicine and I feel like a new person. I function better which as a mom I feel less of loser to help take care of my daughter. We bond but some days it is an effort to get off the couch and those days I have to remind myself to rest and get better for her.
Well that's all the updates I got until I see the dr next Friday.
Good night
Stephanie
Recently, went back to the chiropractor, started on some supplements for my liver and my adrenal glands. Also quit taking my pain drugs and my heartburn medicine and I feel like a new person. I function better which as a mom I feel less of loser to help take care of my daughter. We bond but some days it is an effort to get off the couch and those days I have to remind myself to rest and get better for her.
Well that's all the updates I got until I see the dr next Friday.
Good night
Stephanie
Thursday, June 27, 2013
Pity Party of One Update
I update the Facebook daily but this blog is meant to update or keep informed more then a quick status. So these I'll just be doing weekly or if I have an update that is needed. Just wanted to use this blog to vent for a second but to update everyone on what Karmanos has told me.
Karmanos
So after dealing with Henry Ford my meds were cut back and I had a seizure as a result. The appointment at Karmanos I got sicker and sicker and eventually was put on iv meds for 4 different medicines. They pumped me full of fluids, Zolfran which is awesome! Along with some of my other drugs. After I had to recover for two days but left great still do. Since I was so sick we had to remeet the dr and I got see more then his shoes this time!
So chemo meds were started on Tuesday and I have tolerated them well thus far. As of right now I take more medicine then I ever have in my life but they help so we will go with it. I do my essential oils too, that will be a blog in itself. But with everything I just rely on the big man upstairs.
Pity Party of One
So I have cancer for the second time. It sucks, makes me mad, makes me want to throw stuff but at the same time I have the attitude of bring it. Adversity in life happens, how you deal with it is everything. I honestly believe people handle things one of two ways. Either you deal with it headstrong or you fizzle off and die. So many times I have see people flat give up on things that I would consider trivial or I have seen seen people use their determination to rule the world and beat cancer. Myself I just chose to overcome this obstacle I am facing the same I always have, head on and with determination.
I know when people here I have stage 4 Melanoma that has spread through my body first thing they think is well she's on her deathbed. I am nowhere near my deathbed and I'm sure that makes my enemies upset but I don't care frankly. With the advancements of Melanoma research (new drug being approved next month for example) there is no need to boohoo as I will be here. The medical team seems to think this will work. The medicine they are giving me is approved by the FDA and the results from the study are huge. Who wants 70% reduction in tumors in 3 months? That would this lady over here. The research is promising so don't cry for me because I am too much of a broad to go anywhere.
People ask how do you stay positive? How do you stay so strong? How do you not curl up and want to die because I would? It's a combination of things. Yes curling up and dying could be a option but what does that serve? I have a 4 month old child that would just teach her mommy is weak. The goal is to raise this child for greatness how can I do that when I am crying and a hot mess in the corner of a room? So here is what I have chosen to do.
I have chosen to do is to live life to the fullest. My daughter needs me on a daily basis not just on holidays. She needs me to feed her,rock her, assure her I'm ok she's ok and everything else mothers do. When I am sick she knows it so I got to stay well so she knows that everything in the world is fine and she's safe. Biggest thing is relying on my faith. Not everyone is a believer but I have decided to bury myself in faith, prayer and believing in a higher purpose to all this. As the verse says "I can do things through Christ which strengthens me." Philippans 4:13). This verse and the Serenity prayer have been the two things I have been holding on to when I waver in faith.
So for me I don't see this diagnosis as in a death sentence it is merely a bump in the road. Either way I choosing to live life with grace and dignity for how ever long that maybe(we going for 50 years or something longer).
So how can I help
This one is another I get and frankly I don't have a cool or good enough answer. I just ask for prayers because everything will be provided in one way or another. As of right now I can do things for myself and daughter but as the chemo goes on who knows. Weak and tired are the two side effects but not on deathbed yet. If I can think of away I need help I'll mention it. But main thing prayers,motivation and salutations are the biggest things right now.
Thank you and God Bless
Stephanie and Emberley
Karmanos
So after dealing with Henry Ford my meds were cut back and I had a seizure as a result. The appointment at Karmanos I got sicker and sicker and eventually was put on iv meds for 4 different medicines. They pumped me full of fluids, Zolfran which is awesome! Along with some of my other drugs. After I had to recover for two days but left great still do. Since I was so sick we had to remeet the dr and I got see more then his shoes this time!
So chemo meds were started on Tuesday and I have tolerated them well thus far. As of right now I take more medicine then I ever have in my life but they help so we will go with it. I do my essential oils too, that will be a blog in itself. But with everything I just rely on the big man upstairs.
Pity Party of One
So I have cancer for the second time. It sucks, makes me mad, makes me want to throw stuff but at the same time I have the attitude of bring it. Adversity in life happens, how you deal with it is everything. I honestly believe people handle things one of two ways. Either you deal with it headstrong or you fizzle off and die. So many times I have see people flat give up on things that I would consider trivial or I have seen seen people use their determination to rule the world and beat cancer. Myself I just chose to overcome this obstacle I am facing the same I always have, head on and with determination.
I know when people here I have stage 4 Melanoma that has spread through my body first thing they think is well she's on her deathbed. I am nowhere near my deathbed and I'm sure that makes my enemies upset but I don't care frankly. With the advancements of Melanoma research (new drug being approved next month for example) there is no need to boohoo as I will be here. The medical team seems to think this will work. The medicine they are giving me is approved by the FDA and the results from the study are huge. Who wants 70% reduction in tumors in 3 months? That would this lady over here. The research is promising so don't cry for me because I am too much of a broad to go anywhere.
People ask how do you stay positive? How do you stay so strong? How do you not curl up and want to die because I would? It's a combination of things. Yes curling up and dying could be a option but what does that serve? I have a 4 month old child that would just teach her mommy is weak. The goal is to raise this child for greatness how can I do that when I am crying and a hot mess in the corner of a room? So here is what I have chosen to do.
I have chosen to do is to live life to the fullest. My daughter needs me on a daily basis not just on holidays. She needs me to feed her,rock her, assure her I'm ok she's ok and everything else mothers do. When I am sick she knows it so I got to stay well so she knows that everything in the world is fine and she's safe. Biggest thing is relying on my faith. Not everyone is a believer but I have decided to bury myself in faith, prayer and believing in a higher purpose to all this. As the verse says "I can do things through Christ which strengthens me." Philippans 4:13). This verse and the Serenity prayer have been the two things I have been holding on to when I waver in faith.
So for me I don't see this diagnosis as in a death sentence it is merely a bump in the road. Either way I choosing to live life with grace and dignity for how ever long that maybe(we going for 50 years or something longer).
So how can I help
This one is another I get and frankly I don't have a cool or good enough answer. I just ask for prayers because everything will be provided in one way or another. As of right now I can do things for myself and daughter but as the chemo goes on who knows. Weak and tired are the two side effects but not on deathbed yet. If I can think of away I need help I'll mention it. But main thing prayers,motivation and salutations are the biggest things right now.
Thank you and God Bless
Stephanie and Emberley
Wednesday, June 5, 2013
Hello World Backstory
So I thought a Facebook Fan Page would be all that I needed, eh wrong. With a news feed that is pages and pages deep a lot of people had no clue and still don't of what's going on. So here's the back story.
In 2009 I had stage 2 Melanoma that was successfully removed, completed chemo for six months, had the surgery that was needed and was sent on my merry way. Fast forward to 2013. I had my daughter in February and was going about life. Then May 20th happened.
I was sitting in my living room chair watching tv, holding my daughter when I started staring at the fan like hello Mr. Fan. Anyways I end up having a catatonic seizure and things got weird from there. Tried to talking but everything was jumbled and all I could say was no and yes. So I wrote on a piece of paper Stroke or Seizure? We went to the hospital where my senses were coming back slowly. After having a CT scan all of a sudden I had a Grand Mal seizure and my heart stopped. Yikes!
They revived me obviously but I had no idea the extent of what was going on. Turns out the Melanoma is back. Like really really back and not good. After I was stabilized they rushed me to Henry Ford Main downtown into ICU for 24 then put me on the Oncology wing after that. I was in the hospital for five days and so out of it that I didn't understand the severity of the situation until about a week into the ordeal. So here's what is going on:
I have stage 4 Melanoma that has metastasized to my brain, lungs, chest wall and a tiny speck on my liver. In my brain I have 40+ inoperable tumors, 4 in my chest, 1 in my chest wall and one on my liver. There is no stage 5 people. Things just got real.
Everyone keeps asking about life expectancy, my oncologist had the best answer. "I'm not God!" Truthfully that is the best answer because well he kind of isn't. So at this point it is all about enjoying life to the fullest and go from there. Decided any stressors at this point in life are not worth it. Sweating the small stuff does not matter.
Radiation will be complete tomorrow and then on to chemo once I can get an appointment at Karmanos or Henry Ford. Not sure what form it will be in once I know I will tell everyone.
In 2009 I had stage 2 Melanoma that was successfully removed, completed chemo for six months, had the surgery that was needed and was sent on my merry way. Fast forward to 2013. I had my daughter in February and was going about life. Then May 20th happened.
I was sitting in my living room chair watching tv, holding my daughter when I started staring at the fan like hello Mr. Fan. Anyways I end up having a catatonic seizure and things got weird from there. Tried to talking but everything was jumbled and all I could say was no and yes. So I wrote on a piece of paper Stroke or Seizure? We went to the hospital where my senses were coming back slowly. After having a CT scan all of a sudden I had a Grand Mal seizure and my heart stopped. Yikes!
They revived me obviously but I had no idea the extent of what was going on. Turns out the Melanoma is back. Like really really back and not good. After I was stabilized they rushed me to Henry Ford Main downtown into ICU for 24 then put me on the Oncology wing after that. I was in the hospital for five days and so out of it that I didn't understand the severity of the situation until about a week into the ordeal. So here's what is going on:
I have stage 4 Melanoma that has metastasized to my brain, lungs, chest wall and a tiny speck on my liver. In my brain I have 40+ inoperable tumors, 4 in my chest, 1 in my chest wall and one on my liver. There is no stage 5 people. Things just got real.
Everyone keeps asking about life expectancy, my oncologist had the best answer. "I'm not God!" Truthfully that is the best answer because well he kind of isn't. So at this point it is all about enjoying life to the fullest and go from there. Decided any stressors at this point in life are not worth it. Sweating the small stuff does not matter.
So now what?
Radiation will be complete tomorrow and then on to chemo once I can get an appointment at Karmanos or Henry Ford. Not sure what form it will be in once I know I will tell everyone.
How you can help?
Everyone keeps asking how they can help. At this point I just request healing prayers nothing more. It's a difficult painful journey so anything uplifting via prayer is highly needed. Send me inspirational quotes on Facebook or something like that.
In due time
Everything happens for a reason and in due time this diagnosis will make sense, hopefully. However, with that being said I am going to finish this first installment of my blog.
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